~Butterfly Kisses~

Flare ups and have mercy....... a ROOT CANAL

2012-02-27T10:05:00.000-07:00

Things are going not so bad. I am having weird symptoms going on and I believe they just may be this new medication. Not positive but I have an appointment next Monday so we shall see what he says. My blood pressure keeps dropping extremely low. 87/40 Most of the time. This is ok if I am not moving, (LOL) but try and do something and well that another story. I am starting to believe this is why I can not sleep at night. Our bodies are very fascinating and so smart. My pressure drops too low and doesn’t allow my body to go to sleep, incase I wouldn’t wake up. Very smart our bodies are. I can almost bet that is what is happening. I tried to look and see if this was a side effect and couldn’t find much, but this started around the time I started the new med and is only getting worse. I take this pill mid-morning. My pressure is at its lowest at bedtime and then back to normal or close to normal by morning. 111/70 I then take the pill again and it starts all over, slowly decreasing by the hour. I don’t know, I could be totally wrong but that is what I am thinking anyway. I am for sure having some flare ups as well too. Hives was a HUGE problem for me for 10 years and since we have started chemo for treatment, I have had none. This is a miracle in its self. Unfortunately the last week, week and a half I am starting to have some. Also the foot that had the toes turning black is killing me, very painful like last year. There is no discoloration on them though. It is weird the whole foot is bothersome but they look great. So I am starting to think this medication may not work. We will get his opinion on things next week. I am not going to worry about it until I have something to worry about. I was finally able to get some dental work done this past week. When you are on chemo they usually won’t do any dental work. I have not been able to get my doctor to sign the release form for me to have work done. It had been almost 2 years since I have seen a dentist. Now in my 37 years of life I have NEVER even had a cavity. Nothing, I have only had to get cleanings done. I have been blessed with great teeth. Well thanks to steroids and chemo I need a root canal and I have 3 cavities. HAHAHA! OMG, have I told you how much I despise the dentist? I rather give birth again, with no epidural! So, last Friday I went in for my root canal. They had to give me valium the night before and then I also take it an hour before the procedure. I have to say it did nothing and I mean nothing for me. I felt no different. These types of medications for some reason have no effect on me. So we used gas during the procedure as well. Thank the Lord, because I don’t think I could have ever gotten through that with out it. She was unable to finish it on Friday, after 2 hours of working on it I have to go back this Friday for another 2 and half hours just to get done with the root canal!!! Oh God help me. After that I go back in the following Friday so they can place the cap on it and then get my teeth cleaned. Then the last appointment I will get the other cavities filled. She was explaining things to me and comparing certain things to having cavities filled, like I should know. She thought it was crazy I have never in my life had anything done. Some of you probably think I am crazy, but I hate the dentist. All the medical things I have wrong and the surgeries I have had to endure, no big deal. The dentist is another story! Anyway, I bucked up, pulled up my big girl panties and got in done. Well some of it, only about 4 more weeks to go!! Yippie, for me!!

The kids’ football season came to an end. Sad to see it end, they really enjoyed it and I really enjoyed watching them on the same team this year. Unfortunately next year Jacob will be too old to play. He wants to play basketball now, so I will be signing him up shortly for that. I believe that season starts in the spring. McKenna is taking a break with the sports. She is having a really rough time lately. We have even decided that she needed to back out of her chorus and honor chorus classes after school. I am having a hard time just getting her through the school day. All of her blood work came back looking great except for her factor VIII levels were high. Basically that is a clotting disorder. Her levels being high she is susceptible to clotting. This really doesn’t make sense if you look at the symptoms she is having. Her doctor agreed but also said that it is not for us to understand. Hematology is very hard to understand. So her file is now being sent to Phoenix Children’s Hospital and she needs to be seen by a Hematologist. So frustrating that I can’t fix her or help her. I tried to research why her Factor VIII levels would be elevated and what causes that and it is like reading Chinese, I can not and will not figure it out. I even asked my regular PCP (which is McKenna’s as well) and she said the same thing. So hard to figure that stuff out, she doesn’t know either. So we just have to wait until she sees them. (Don’t even have the appointment scheduled yet) My patience is constantly being worked on. Yes Lord, I know I need help in this area….you can stop reminding me. Please. I will post if anything changes or is new. Thanks for continual prayer. I pray you and your families are blessed.

Busy, Busy

2012-02-08T09:40:00.000-07:00

I feel like I have not stopped in about 2 weeks. It has been a little busy to say the least. McKenna has been having some issues that she would probably die if she knew I was writing about. She doesn’t read this blog. I do post it to Facebook and I “block” her, Jacob and friends from seeing it, so I think I am safe. She is having some female issues that are out of control. It has been going on for 8 months. It is only getting worse. Now I know when a girl first starts it is a little screwy. This is anything but. We have definitely waited to see if things would work themselves out and they have only gotten worse. She has had to start hormonal pills to try and rectify the situation, they have changed the pill to higher dosages and still nothing is working. (we are going on week 6 of not stopping) She is very anemic at this point and as a mom I feel so bad. I can’t stop it or fix it. We have lived in the doctor with her for the past few weeks. She has had an ultra sound and from what they see it looks normal. For months we have been trying to find a gynecologist that would see her. No one wants to treat a 10 year old. She is a patient at Phoenix Children’s hospital and has been for years because of gastro issues. So I called there an explained what was happening and they would not see her for that either. Now explain to me, they treat “children” (0-18) so almost all (I would assume) these girls there have started menstruation, why the heck would you not have somebody on staff to deal with such issues? Anyway, it has been a nightmare trying to find someone to help. I should include that along with this issue she is having extremely painful migraines to go along with this. As of yesterday I got her into a pediatric endocrinologist who will see her and see if he can help. He is at least willing to see her for this so that is good news. About 10 minutes after finding this doctor to see her, her pediatrician called and finally found a gynecologist to see her. They are Ahwatukee so we are going for a drive when we go, but that is fine. They gynecologist appointment is Feb. 14 and the endocrinologist is Feb 28. I have decided to keep both appointments and see what they both have to say. I figured the endocrinologist wasn’t a bad idea being that I have so many auto immune issues. They also scheduled a scan of her brain, just to make sure nothing else is going on there that would cause the migraines. We have to wait for insurance to ok that and then we will go get it done. I am sure it will all work out but it is frustrating to see her go through it. She is too young to have to deal with this. Through all this she is still playing football and doing the things she loves. She has her moments of being overly sensitive but who can blame her. I would be too.

I had an appointment Monday with Dr J. It wasn’t supposed to be till the end of the month but they rescheduled it. We are still transitioning from one med to the next. We are hoping all goes well. At this point everyday can be different. I am actually feeling half way decent. I am finally loosing weight from all those high dosages of steroids. For the longest time we were thinking that my body was in starvation mode. Which is not good, but I eat like a bird and wasn’t loosing anything. But the last couple months it is finally coming off. So hopefully we can keep things in check and I will not have to higher the dose of the steroid again. I am still having bladder issues; we are hoping the cytoxan hasn’t damaged it. He doesn’t seem too concerned with it at the moment so I guess I won’t be. I have been having horrible restless leg syndrome at night. He says it is more than likely the vasculitis. It can also be caused by low iron levels as well. (Which I do have) But I am taking iron and have been for awhile and it keeps getting worse so he has been trying to treat it. It gets so bad; I swear it could make a person go crazy. A couple weeks ago he put me on something and said this will work and it will knock you out. You will sleep for sure. Well, I took it and the restless leg went away but I could NOT fall asleep! It gave me insomnia so bad. I did this for 4 nights in a row. By the fourth night I couldn’t fall asleep until 4 in the morning. It was insane, so I had to stop this med. When I went back to see him this week, he informed me that in rare instances it can cause insomnia. There’s that word “rare” again!! I mean seriously, can I get a break here?!?! So this time he gave me another med. I guess it is used for anxiety and panic attacks, now usually I would have said, ummm no, I don’t have anxiety or panic attacks so I am not taking this but he basically told me that it WILL knock me out and I can finally get some sleep. I know this sounds bad but I so need to sleep so I was willing to try anything. Well, guess what? I probably slept about 40 minutes that entire night after taking it! I am not sure what the heck my body is doing. It is almost like I have the adverse effect. I have been told (in hospital) that they don’t think my body metabolizes certain meds. I have taken Percocet for pain (after surgeries) and it’s as if I haven’t taken anything. I feel no effects at all. I am not sure if this is what is happening but it has to be doing something because it makes my insomnia even worse. Last night I decided to try the natural way of doing things like I normally would and I think it helped a bit. I took the melatonin and magnesium. I know with both these things sometimes it takes a while to build up in your system but it seem to help. I still had a hard time falling asleep but not as bad as usual or maybe it was from pure exhaustion.

I can almost braid my hair!! Ok, kidding but it is growing in nicely. I just wish it didn’t have to have so much gray to it. Still have to wear a hat because there isn’t enough to style it, it just kinda sticks up straight still. I am also over shaving my legs again. Really, I didn’t miss it. Does it really have to come back?

One last thing, hopefully you all don’t think I am crazy. I have an app on my phone that is just notes, so basically you can open a “note” and type whatever you want to remember it. I usually put grocery list or reminders ect. So I am looking through it and I have 2 “notes” that I have no idea how they got there. I am really racking my brain, and I really have no idea. They are both on the same date and time. They are from Nov. Now I know this chemo has fried my brain at times. I swear it has affected my memory, but I truly don’t remember these “notes.” These notes are all bible verses. Good ones at that. I think I would remember putting these in. Most things on this phone I am unable to copy and paste to a note and these are very long notes. Each has about 6 verses on it. I am positive I would have remembered putting them there. I am going to leave you with one; these are all truly fitting for anyone who is struggling with anything……

Peter1:6-7

“So be truly glad. There is a wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith if genuine. It is being tested as fire tests and purifies gold-though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day the Jesus Christ is revealed to the whole world.”

A little bit of an update

2012-01-20T13:21:00.000-07:00

Oh where to begin……Well first off I think this last antibiotic has worked. The cough is gone, still congested but I think it is getting better. I am done with the antibiotic so fingers crossed it will continue to get better. At least it didn’t end me in the hospital this time, so that’s worth being excited! Wednesday’s appointment with Dr. J was good. Good meaning he was attentive, in a good mood and answered some questions. Now when it came to me and how the vasculitis is doing, not so much. I have had a flare up of the vasculitis. Vasculitis can cause these little red and purple lesions on the body. (which was NOT a symptom I had in the past) Mostly it occurs on the legs, which is where mine is at but it is also on my face. Yes, my face! Isn’t that just lovely? Ridiculous is what I say it is. So when he saw me yesterday he was a bit frustrated, not with me but with what to do. His goal was to switch me to the new med by now. Cytoxan is the strongest med they can give me to try and control it so the quicker I can get off of it the better chance I have to use it again if needed. They both (cytoxan and this new one) fall under the “chemo” category. Chemotherapy is a drug treatment that uses powerful chemicals to kill fast- growing cells in your body. So what he decided to do was to start the new med while I am on the full dose of the cytoxan. For two weeks I will be on half the dosage of the new and the full dosage of the old. After two weeks I will decrease the old by 75 mg and continue on that till I see him again in 5 weeks. He is hoping with the two together that my body might react to it and get this flare up under control. Plus it does take awhile for the new one to build up in your body. I guess we are just praying for the best because I am not sure what else there is to do. My lungs seem to being doing great, so this flare up hasn’t affected them, which is great news! I really don’t understand this disease, I start doing better and then wham, watch out. I just wish there was someone out there that understood this better. Yes I have done my fair share of researching and it just seems that not a whole lot of people understand it. I guess like with anything else, either you respond well to meds or you don’t. So what it comes down to is with the strongest medicine (chemo) to try and get this under control I am still having some pretty good flare ups, which is concerning. We will just continue to pray that I will see some results again with this new med. I can’t say it is all bad, I have had some symptoms from the past never resurface at all, so it is doing something. (we think) Just very frustrating to see results with one thing (lungs) and then new symptoms start occurring. I am at exactly one year into this treatment and some days I wonder if I am any better off. I have to say I really feel like I am. It might not sound like it and I wonder myself sometimes but at least we are moving in the right direction. I am certain that the Lord is watching over and taking care of things. It may not be what I had planned for my life but it has been a life made perfect by him. I tell myself this is just temporary, I can do this for however long he allows me to. I will write more over the next few days. There were a few other things to tell you about but with the new meds and the chemo it is making me a bit sick. So I will cut it short and finish another time. Thank you for all the prayers,

Christmas, News Years and bronchitis.....

2012-01-05T18:12:00.000-07:00

I hope everyone had a very Merry Christmas and a Happy New Year! Our Christmas was great. I Love spending time with family and enjoying the magic and love of the season. Here are just a handful of pics.....

My favorite......oh how I love my heated blanket!

The day after Christmas McKenna got sick with bronchitis. She was put on an antibiotic quickly so I was praying it would skip right over me and I would not get it. No such luck, I caught it and we still both have it! It will not go away. It is kicking both of our butts! We have spent a lot of time at the doctors, hospital, couch and bed. Not a very fun way to spend Christmas vacation but at least we are miserable together. Needless to say New Years eve we were all in bed by 9, Jimmy included and he wasn’t even sick. Not the young party goers we once were, are we? I think I have cracked a few ribs from coughing, and this dang fever keeps coming and going. When I went to the ER Monday night he left it up to me as to whether or not I should be admitted. The dr wasn’t the brightest of the bunch. The vasculitis already compromises my lungs and to see that you have to do a ct scan with dye, well all he did was an x-ray and proceeded to say it looked ok. Wonderful. As far as the blood work, I am on chemo and I am sick so when I catch something (cold, flu) my WBC count drops even lower. He tried to explain to me that I couldn’t be fighting an infection because my counts are too low?!??! HA, ok. Well I really didn’t want to stay so I looked over at Jimmy and we played dumb and said ok, great. I figured I pretty much know when I am in trouble and need immediate help so I was comfortable allowing him to believe what he had just said to me so I could go home. It is scary to think he doesn’t know what he should about certain blood counts, sicknesses and medicines. I feel sorry for the next person who doesn’t know any better. Anyway my WBC count at hospital was at a 3 that night. 6 days earlier I decided to stop the chemo because I felt so bad. Thank the Lord I did because I am sure I would have had no WBC count and I would have been forced to stay in the hospital. (well maybe, he may have thought differently) I think McKenna and I are slowly doing better. My antibiotic is gone so hopefully I will not need a new one. We went to Target yesterday because we needed a few things and we both were probably in the store for 10 minutes and we looked at each other and said, “ok, need to go home.” We went back today and spent another 10 minutes and finished with what we started yesterday. McKenna has not been able to join in on football practice either and she is not so happy about that. Tonight they are having a scrimmage and unfortunately we will be watching from the sidelines. Hopefully by game time Saturday she will be ready to go. So far Jacob and Jimmy have been able to avoid this. I am praying neither of them get this, you didn’t hear it from me but they are the biggest babies when they are sick and this has been no walk in the park. McKenna even said, “oh I hope dad doesn’t get this, I don’t think he can handle it.”

My last posting I had told you that Dr J was going to be calling so we can start changing over my meds and how nervous this had made me. Well I finally received a call yesterday to tell me that he has decided not to change them yet. I need to continue the cytoxan and he will be sending me out some blood work to do. My next appointment is on Jan. 18 with him and at that time he will discuss things further with me. So I am not sure if he found something out or just wants to take more time before doing it. I guess I will have to wait and see but for now I am still on the cytoxan. On the 26 of this month it will be a year since I was first hospitalized with all of this and 11 months since we have started the chemo. My hair is growing back really well at the moment.

Just about ready for a bow! LOl Kidding....I am thinking as it grows I am going to keep it short for awhile and see what happens. This new med he is going to be switching me too also causes hair loss so my luck it just might all come out again. Unfortunately the hair on my legs decided to grow back too! I really could have gone without that. I didn’t miss it and as far as I am concerned it NEVER had to grow back. I hate shaving, it has been a nice break but I guess everything has to come to an end eventually. To bad that couldn’t have been a permanent side effect. Oh, wishful thinking. One other complaint about this hair growing back on my head….they say when your hair grows back from being on chemo a lot of times it grows back differently. Different texture, if once curly maybe now straight and vice versa, I really am not all that happy that I have A LOT of gray hair growing in. I mean, come on, seriously can a girl get a break? Grey? I’m not that old, I should not have gray hair! I didn’t have any before it fell out so what the heck! Alright, alright I will stop complaining.

My nephew turned one on New Years Eve, he is so stinking cute! He puts a smile on my face and warms my heart, just love him!

To leave you with something, I read this the other day and loved it. It has reminded me of all of you who have reached out with love and prayers. “Family isn’t always blood. It’s the people in your life who want you in theirs; the ones who accept you for who you are. The ones who would do anything to see you smile and who love you know matter what.” ~unknown~

Scared of changes

2011-12-22T11:40:00.002-07:00

My appointment yesterday went well, I think…..I am very apprehensive to change so to be “excited” is hard. I will explain things first and then go into how I feel. We (Dr J& I) have discussed for awhile switching from the cytoxan to something else as soon as we could. He feels like we should start that now. I have been on cytoxan for about 10 months now; the average length that one is usually on it is 6 months and then they are switched to something they are able to be on more long term, if it works. So I have gone well over the 6 month mark. I am waiting for a phone call from him as to how we are going to switch over to the new meds. He needs to do some research as to how to do this. The new medication takes about 3 weeks to get into you system and work so I will still be on the cytoxan for about 3 to 4 weeks while we make the switch. He is just not positive on the dosages of each medication together. I can’t just stop one and have the other take 3 weeks to work and then everything goes haywire. I am SO nervous to do this. I should be very excited to move forward and see what happens. I know how cytoxan makes me feel and I know that the cytoxan has worked, so switching things and not knowing what my body will do is nerve racking. When reading up on this new medication I have found that it does the same thing as the cytoxan. The side effects are pretty similar as well. I think I have handled cytoxan well so I hope I handle this one well too. From what I can gather nausea and vomiting are the two biggest side effects. Hair loss is on the list as well. (just when my hair is growing back in) You wonder if they are similar and side effects similar, why the change? I’m not positive, my doctor has been concerned with bladder cancer from the day I started cytoxan and also how toxic it is. Ironically, when picking up the new medication the first warning is: LONG TERM USE OF THIS MEDICATION INCREASES THE RISK OF DEVELOPING CERTAIN TYPES OF CANCER (leukemia, lymphoma, skin cancer and a very rare cancer called HSTCL) I must say there are more warnings on this medicine than the cytoxan and that darn word rare, good grief, if it says rare well you might as well put my name next to it. I will still need blood work every two weeks, this medication also causes low white blood cell count and anemia as well. (a long list but the two I struggle with)So I could very well still have all the same issues. I am trying to stay positive, really I am. Jimmy got in the car and was so excited that I will be off the cytoxan soon. I think I am just more nervous, nervous that this won’t work, that I will be back to square one or that I will not handle this med well. Just worries me that I might have more issues on this new med than the one I was on. Especially since side effects and what it does are the very similar. I know I shouldn’t worry about things I can’t change but it is hard not to.

*Friday I had my surgery to fix or replace the port. They ended up not replacing the port (because it is functioning) instead they went in through my groin and cleaned off the end of the tubing. Basically what happens is your body fights off the foreign object (port and tubing) in your body and ends up forming a sheath over the outside of the tubing not allowing fluid to be pushed through or blood to be drawn out. So they go in and remove the sheath covering. Problem is it will probably happen again, so if it does I will have surgery to take the port out and have a chest catheter put in. Difference is with a chest catheter it is on the outside of the body but you are able to flush it daily to keep the line open. The port is under the skin and is only flushed once a month or when used. So for me it would be more beneficial to flush it everyday, downside can’t get it wet and everybody will be able to see it. Hopefully I can get a little more time out of this port.

Thank you for all your continued love, support and prayers! I wish each of you a very Merry CHRISTmas and a Happy New Year!

Rare......my new middle name

2011-12-13T14:57:00.002-07:00

uncommon, unfrequent, unheard of, unimaginable, unique, unlikely, unthinkable, unusual, unwanted, few and far between....original. Just a few words that describe the word "rare." A word that I am beginning to despise.
I am finding that when you are rare doctors seem to be afraid of you. They are not sure what to do and how to do it. Of all the testing that the Mayo clinic did he found no reason as to why I have this disease. (less than 1% of people who have this disease find no cause, I am that less than 1%) I guess I will never figure out why or how. For most people afflicted with vasculitis there is a culprit. (a protein, an antibody, cancer) Absolutely nothing was found. I did ask since I have been on Chemo for almost a year, could that be masking certain results and it could. So really what he is saying is that there was nothing found in the testing he did and it is not worth the risk to stop all treatment to see if anything shows up. He did say with 100% certainty that I have had this for at least 10 years, maybe longer. In getting ALL my records from the various doctors over the past 10 years for the Mayo doctor there was a biopsy that was done (I had several biopsies done 10 years ago) that had come back with vasculitis. (yes 10 yrs ago, it is written in blk and white what I have, go figure) I did not have a copy of this particular biopsy. When my symptoms first started I never got copies of anything. I had never really been sick so I thought nothing of it. I figured doctors were competent and could read results and know the severity of it. Over the years that has not been the case and I have learned to get copies of EVERYTHING! If I could teach anybody anything with all I have been through it is just that, get copies of blood work results, biopsies, anything and everything. After every appointment your doctor will write something up. (a report or supplement) Ask for a copy of that as well. I understand that doctors are human. They make mistakes but mistakes should consist of the wrong date, misspelled name ect. Not looking over a diagnosis that could take your life if not treated. Something else I have learned is that you and only you are your advocate in that doctor’s appointment. You don’t understand something or if you have questions you have to ask. No one is going to ask them for you. Your doctor is not a mind reader. He does not know what you are thinking. He is the doctor, he has the expertise in his area so for him he is using “medical” terms and you have to stop him and ask him to please speak in terms that you will understand. Never feel stupid, it would be stupid not to ask questions. We have learned this lesson. I no longer go to any appointments without Jimmy. It is an extra set of eyes and ears. It is just nice for him to hear the exact same thing I am hearing, we learn together what I am dealing with. It then no longer becomes “I” it is “we.” “We” are now dealing with this together. I also have a notebook with questions that I have written in it and that comes along so I know for a fact I am asking every question I have and I write down the answers as he answers them. It is so helpful, especially when you are taking in a lot of information. You will never remember it all and it is nice to read back through it. Ok, sorry I kinda rambled off the subject of my appointment. Didn’t know you were going to get schooled in going to the doctor, did ya? My appointment……as I had said prior I got the “you are rare” statement. Like “1% of people rare.” Well thank you sir, I really did not ask for that title nor do I like it. So with that being said he tried to explain a few things but really what it comes down to is that there is really no cut and dry answer or regiment that they follow. Basically with cases like mine nothing really suppresses the immune system to stop this except that they have seen success with the chemo/steroids. With many people they have been able to suppress it enough to switch them from chemo to something else long term. Those people they usually know what has caused this so they are better equipped to treat it. He told us that I have been on the chemo long enough that I should be able to switch to something else by now, but with just recently stopping the chemo for a week while in the hospital and the vasculitis flaring up, that we are more than likely not going to be able to come off the chemo for awhile or maybe never. I may have to find the lowest doses possible of the steroid/chemo combination that holds everything at bay for long term. This may be for the rest of my life or maybe not. I am really just a guinea pig, they really have no clue what my body will do or not do. I guess that is with anybody who has a life threatening illness; you never know what your body will do or how it will respond. So with all this being said I will remain with my immediate doctors. They are doing all that is necessary to insure that I am getting adequate treatment. There is nothing new or different that the Mayo Clinic would do. At least I have my second opinion; I have to have comfort knowing that they would have done nothing differently. That the diagnosis is correct and chemo is the treatment. It really isn’t all that comforting to be honest.

This Friday I have my appointment to fix/replace the port. I am assuming it will have to be replaced. Hopefully the third time it will work longer than a few months. I am praying I will be able to get all my Christmas shopping done for the kids on Thursday. I know, talk about last minute. With everything else going, appointments, hospitals and tests there has really been no time. When there has been time, there has been no money. My car had to be repaired last paycheck, you know the sad story, if it isn’t one thing it is another. I know I am not the only one, and I know it could be a lot worse. I have a roof over my head, health insurance (thank you Jesus) food to eat; my kids have their health, I have my dad here, my husband ROCKS and I could go on and on. So my shopping WILL get done Thursday. My very, very, very good friend Elaine is going with me. I get a little anxious going by myself these days. (if I have a lot to do) One minute I am fine, the next not so much. So Thank You Elaine! I appreciate all that you have done for me and the kids! You are not only “taxi driver” for your own kids but mine as well. I cannot thank you enough; I have been blessed to call you my friend.

So Friday, port surgery and then my next appointment is December 21 with Dr J. I will update at that point. Be blessed and keep the prayers coming! Much Love,

2011-12-09T10:47:00.000-07:00

I hope this finds everyone well. My Mayo clinic appointment that was scheduled for today was cancelled. All week I had been complaining to Jimmy, that I didn’t feel the appointment for Friday was worth the drive out there. It was a consultation with an allergist. I know that this doctor had something in mind when he wanted me to have this consult but I just didn’t see the point. I have been to 3 different allergist in the past and I am not sure what would be different this time. We knew I needed to go to make sure this doctor knew we were doing all we could to figure this out. We had just been discussing it when my phone rang and due to a family emergency my appointment had to be cancelled. I believe that was God telling me I was correct and it was an unnecessary appointment. That’s how I see it anyway, Jimmy laughed! So my next appointment is Monday Dec. 12. This is the appointment that I should find out if he found anything else wrong or if he was able to figure out a cause as to why I have this. I am thinking that nothing has been found and they were unable to find a cause. I would like to think if anything had been found I would have received a phone call to let me know. I guess I could be wrong, but I am not sure I will like the fact that they have waited months to inform me of any findings. I guess I will wait to see what happens before I think about any of that. I will be sure to update after Mondays appointment. As far as I am, I think I am doing fairly well. I am definitely still fighting the vasculitis, but hoping it is because I had to stop the chemo for awhile and also because we lowered the dose when I started it back up. I am currently waiting for a phone call from Banner Estrella to get my port fixed. Yes, again! Ever since this one was put in it has never worked right. I am hoping and praying the third time is a charm! I have been fighting a cold since after Thanksgiving and I think it is finally starting to ease up. I can’t take anything for it so I was hoping it wasn’t going to turn into anything else and it hasn’t! God is good. I didn’t even have to use any of the inhalers that are prescribed for the vasculitis in the lungs, so yes I have handled this cold very well! Oh, the little things in life! My fear was pneumonia, since I am so susceptible to it now. I am sure most of you have heard of the neti pot? And if you haven’t well listen up….. I am here to tell you it has been a life saver. I want to say last year or maybe the year before my doctor at the time suggested I use it. (best doctor ever) I was thinking…are you crazy?!?! I am gonna do what, with what?! HA, I have to tell you though, it works wonders! I forgot I had it and about day three of this cold it dawned on me, and I pulled it out and started using it. I am telling you, if done correctly it is wonderful and I swear it helped tremendously.

The kids are……....well kids. Lol McKenna has many things going on. Last week she won I believe what is called a “cape ticket.” So this means she was able to leave school for a special field trip with the principle to have lunch. She enjoyed that. She is in chorus and so Saturday they have a performance and then has a field trip next week as well for singing at the State Capitol and then at an adult center. Those are just a few things they have going in chorus. I believe they are singing at the college at some point and then she has a performance at her school as well. She enjoys this time of year because she has so many things going on. On top of that football is starting! Practice starts next week and they are excited. Jacob has decided to play as well this year. It started out that he wanted to play because a friend at school was and this friend’s dad was going to coach. Well as it turned out his friend’s dad was unable to coach and thank the Lord they all ended up on McKenna’s team. So, Jake gets to play with his friend still and it is SO much easier on me to have to take them to practices and games. I am doing no more than I would if only McKenna would have played. So that is great news for me! They took it very well too. I really thought they might not like the idea of playing together but they didn’t seem to mind. We’ll see how that turns out once they start playing. Hope everyone has a fabulous weekend!

Happy Thanksgiving

2011-11-24T09:14:00.001-07:00

I started thinking I need to update this blog and then I felt bad. I had put on facebook that I am home and it never dawned on me that there are a lot of you that I am not “facebook friends” with or are just not on facebook. If you are on facebook send me a friend request. (Melissa Scott Rodriguez) Ok, so……I am home!! I got home Saturday evening. I had to kinda beg and plead. He sent me home with blood work for Monday and Wednesday which I had done. I also had appointments on Monday and Wednesday. I will start with the blood work, I left the hospital with a WBC count of a 3 which is SO much better, my last blood work still is reading at a 3. I was a bit surprised that it hasn’t increased at all since we did stop the chemo, but I’ll take it. At least it hasn’t dropped back down. RBC count was still low, but it was now at the higher end of low. SO hopefully it will continue to rise or stay the same. The doctor said when looking at the RBC count they also look at something else to determine things like, needing a blood transfusion. Not sure what he said that was, but he said that was a little low. They like to see that around a 5 and mine was at a 2.2. So we will be watching that closely. Monday I saw my regular PCP, just to give him a heads up and to go over things. I was having some issues with my port in the hospital and we can’t figure out what is going on. First off, there is no blood return and for me that is an issue, that is half the reason I have it. You should see my arms from there frivolous attempts to try and get a blood draw. The doctor had asked that radiology department come in and see and that man was a jerk. He took one look at me from across the room and asked why he was here. (he saw me hooked up to an IV thru the port) I told him there was no blood return and he then stated that well it halved work and that is all he cares about. He isn’t touching it. Now let me explain this is very common, but in some cases it can be a very easy fix and he was not going to do it. He just swore it would not work. When a port is placed the body automatically goes into defense mode because there is a foreign object in the body. Then it forms what is called a sheath on the tip of it. So when you push things thru (IV) it goes thru smoothly because that sheathe opens freely but if you try and pull back to get blood it closes the sheathe up and it will not allow anything thru. The sheathe is basically blood, blood clot almost like a scab. There is something called cathflo, they put it in the port line and let it sit for about two hours. After two hours the cathflo has dissolved the sheathe and you are able to get blood. So it is a very easy fix, if it works. Now why wouldn’t this man want to try this?!?! What does he care, he isn’t paying for it. He wouldn’t even have to do the work, the nurse does. Very frustrating that I was in the hospital that long and they don’t want to try and fix the issue. So back to my PCP, we were discussing this issue and he wasn’t’ very happy. I was under the impression that I would just have to live with it this way. He stated that he did not want it half working, that is what it is there for and it should work 100%. He wrote a script for the cathflo and my home nurse will come out after the holiday and try to fix it. Say a prayer that it works. So now my insurance will probably be paying double what they would have in the hospital. Other than that everything else went pretty smoothly. The blood transfusion freaked me out a bit. Especially when they brought it in to get started, just the thought of someone else’s blood going thru my veins is a little creepy. You’re going to laugh and maybe too much info but yesterday I was in the car with Jimmy and I have three little scabs on my hand from attempted blood draws and when I got into the car one of them started bleeding. When I bleed I REALLY bleed, it takes a while to get it to stop. So, I am in the car looking for a napkin, tissue anything and I can’t find one. I know we have all done this at some point when you have nothing to use, you end up whipping it with your finger and licking it or just lick the place where it is bleeding from. Jimmy says just lick it before it goes everywhere. I looked at it and thought, there is NO way I can do that, it is not my blood! OMG, he laughed so hard and then said you are right I didn’t think about that. You all probably think I am silly; it is in my body so it should be my blood. I know, but I just don’t see it that way. I have someone else’s blood in me for three months. I looked it up, because I wanted to understand it better. So I have someone else’s DNA in me?!? HA! These are things I think about. You can laugh, I am laughing too! Well from what I read, I do!! I will have this person’s blood (it does not became identical to mine or mine) for three months. Your blood cells last three months and then die off and new cells (which are mine) will grow and replace them. That is how people become anemic. Some people become anemic because they are bleeding somewhere in the body. I have become that way because blood cells only last three months and they die off and regenerate new ones, well mine were dying off and not regenerating new ones so I was slowly becoming worse and worse. I love that I understand all this better. So now that you have all had your medical lesson for the day……..LOL All because I started talking about fixing my port. Now onto Dr J, I saw him Wednesday and he checked me out and it was decided to start the chemo back up and get blood counts next week and just keep a close eye on them. I have been off the chemo for a week and yes the Vasculitis has flared up, that quick. Sitting in his office my foot was dark purple, and my body a lovely shade of purple also. He did state something like it was not fixed yet. (purple coloring) Meaning when he pressed on it, it wasn’t fixed so that was good. (Whatever that means) Obviously good, so I will take it. So I will start chemo today. Hopefully I won’t get sick considering I haven’t taken it in a week. I am hoping to enjoy some good turkey. I go back to the Mayo Clinic December 9 and 12. SO we will see what their findings are if any. I will say I am feeling much better since the transfusion, I think a lot of the shortness of breath issues and being extremely fatigue were a result of the anemia. (not vasculitis, yay!) Classic symptoms and yet know one, even with blood work being drawn didn’t figure that out. Hopefully I didn’t ramble on too much and it was all understandable. I am just taking it easy and hoping and praying I don’t end up back there. I don’t sleep, food is blah and well it isn’t cheap! Gas back and forth for Jimmy and then the eating out for the family because they can’t cook, It adds up quick. I read a daily devotions book and I posted the devotion on facebook yesterday. I think it is one that we can all benefit from. I know I can, and will be reading this one daily……..
"Jesus calling"

"Leave outcomes to Me. Follow Me wherever I lead, without worrying about how it will turn out. Think of your life as an adventure, with Me as your Guide and Companion. Live in the now, concentrating on staying in step with Me. When our path leads to a cliff, be willing to climb it with My help. When we come to a resting place, take time to be refreshed in My Presence. Enjoy the rhythm of life lived close to Me.

You already know the ultimate destination of your journey: your entrance into heaven. So keep your focus on the path just before you, leaving outcomes up to Me."

I read this and knew that it was God talking straight to me. Love it when that happens!

On this Thanksgiving I want each and every one of you to know that I am so very thankful for all of you who take the time and care enough to read this blog. I appreciate the love and prayers more than you know. It is when I get that unexpected message or text to check in with me or to just tell me they are thinking of me that mean the most. It may sound stupid to some, but it makes my heart smile. Please don’t ever think you will be bothering me or that others are doing it and your message will seem insignificant. It will not. It is those moments that I cherish and no one will ever know how much it means to me. I have so many things to be thankful for on this Thanksgiving Day, first and foremost my Savior, Jesus Christ, for without him I am nothing. I am SO thankful for my wonderful kids, Jacob and McKenna, without you I would not truly understand the depths of how deeply without judgment you can love someone. Now to my wonderful husband Jimmy, oh where do I start?! You have made me so proud to call you my husband. I never thought you could love so body SOO much more than I did on our wedding day 16 years ago. Not saying I didn’t love you, but it has multiplied and has become something so much more. You are my strength, my rock and my bestest friend ever! Through all of this you have not only taken care of me and the kids you have also succeeded in your job as well. I look at what you/we have accomplished this year with all the hits against us and I am so proud of you! So proud of your accomplishments, so proud to say that yes, this is my husband. Lieutenant Rodriguez, has a good ring to it! Your Mom would be so proud of you! She always looked at you in awe and loved you so much. I know she is looking down bursting with pride that her son has accomplished all that you have. I am pretty sure she can’t contain her happiness for you. Know that she has witnessed all of this and is one proud mama! I love you bunches Jimmy! Not sure what I would do without you by my side! XoXo

Happy Thanksgiving!!!

This past week

2011-11-18T10:07:00.001-07:00

Wrote this last night………I will back up a bit and repeat a little from my last post. On Friday when I was at the Mayo Clinic I received a call from Dr. J’s office to let me know that they had finally found my urinalysis and blood labs that the lab had supposedly lost/misplaced. (by this point we are at about week 3 since I had given them a sample)My urinalysis had a high white blood cell count so they were going to send me a new script for a new test and redo it to see what was happening. I wasn’t feeling like I could have a UTI so I wasn’t too concerned. On Monday I started feeling cruddy. Nothing to bad just not myself. I had said to Jimmy that I think something might be going on. Maybe I did have a UTI. I have had them in the past (long ago) and I have to say I really didn’t feel like that was it. On Tuesday I started feeling worse. I knew something wasn’t right but I went on with my day. That day consisted of relaxing on the couch so it wasn’t much. By that night Jimmy had to go into work for a bit and I went upstairs to bed. Just going up the stairs kicked my butt. I laid down and tried to relax but just couldn’t get comfortable. My heart felt like it was beating out of my chest. I took my blood pressure and it was 95/55. For me that is low. Heart rate was at 125. Very odd, I kept an I eye on it for awhile. After a couple of hours it dropped down to 84/50 and heart rate 125 and started running a slight fever. I called the doctor and of course…..go to the hospital. So off we went. They did blood work and urinalysis. Also EKG and monitoring machine of the heart and Good Lord, hope you are never tired and get hooked up to one of those when things aren’t right with your heart. Alarms the whole time and it wouldn’t stop. Poor Jimmy was about to rip the thing off the wall. After a couple hours another doctor came in to check me out. They came to the conclusion that I would be admitted. My white blood cell count was at a 3.6, which she wasn’t too concerned with. I also had a high white blood cell count in urine which usually means infection. This along with the fever, chills and my electrolytes were off they were keeping me. I will try and explain the Addison’s disease I have, and how this really throws a wrench in things when I get sick. Which in this case I think it made things a lot worse than it was. When a “normal” person gets sick they have adrenal glands that sit above your kidneys and produce cortisol in times of stress. Stress meaning, physical (getting sick) and or mental. (Death in family, stressful day at work ect.) So your cortisol kicks in and helps your body heal, and sustain yourself through hard times. You produce a daily amount just to get through your day and extra when you have times of stress. It also regulates electrolyte system. (When you have been scared and you feel that burst of something almost like a warm feeling go through your body, well that is cortisol) So it really is critical that you have these functioning. Mine do not at all. They have failed, so I have to physically put cortisol in everyday. Which medication wise is a steroid. (hydrocortisone) So, on top of the prednisone for the vasculitis, I also take the hydrocortisone for the Addison’s. When the normal person gets sick your adrenals actually know that you are going to be sick before you and at that point start to release extra cortisol to help you fight this infection/sickness. I don’t get that benefit because I don’t know I am getting sick yet. Now that I am sick, my whole system is stressed and can’t function correctly. Everything becomes messed up. I end up going into adrenal crisis and my body starts “dumping”. (dumping basically means I start urinating more and my body is “dumping” potassium, magnesium and ect.) So I am now sicker than I would have been if I had my adrenals. As you can see, it makes an already bad situation worse. When they did blood work my potassium was already too low and magnesium as well. (Electrolytes basically) I needed to be hooked up to some fluids, especially potassium. I was definitely staying. Her thought was to get me some fluids; some IV antibiotics and I should be good to go by morning and probably could go home. Unfortunately that is not how it happened. My white blood cells have continued to drop lower. Tuesday they were 3.6, Wednesday 2.8 and now today at 1. So needless to say I am not going anywhere. I am basically being held hostage. Ok, not really but that is how it feels. Do you know when you are like this (I think they call it neutropenic) that you can’t have fresh fruit or fresh flowers?!?!? I can’t have flowers in my room…really? Who would have thought? Not me.

When the doctor came in today, he said that oncology was going to come in and give me neutropenia shots to help raise the white cells. He also stated that he had called Dr. J. and spoke with him. I guess when they drew my blood and took urine they do a culture on it to see if anything grows. Now they let it grow for 90 something hours but he had said almost always they are able to tell at the 24 hour mark if I have an infection in the urine or blood. Mine has grown nothing, which is very confusing for the amount of white cells in the urine. So, they are thinking one of two things, either the vasculitis is now affecting the bladder or the chemo is harming the bladder. Either way, they don’t want to change anything. I need to up my intake of fluids incase it is the chemo hurting the bladder. If it is the vasculitis, well I am already on treatment so not much more they can do. There of course is still the possibility that something could grow but unlikely at this point. This is where Dr. J calls me personally, and where am I at???? Yes going to the bathroom! I go every 30 seconds with all this fluid pumping into me. When I got out I listened to the message and he said he would like me to return his call so he is able to speak with me. I was thinking, yeah right, I will get one of his secretarys. I called back and they said, “oh, hold on he is waiting to hear from you. I have to get him from a patient room.” Holy Moly!!!! Are pigs flying somewhere?!?!?! Sure enough he came to the phone and told me he was recommending that Oncology definitely comes to see/evaluate me before doing any neutropenic shot to raise the white cells and also lower the dose of chemo in hopes of it helping with the WBC. I was just shocked I was speaking to him on the phone. It is a damned if you do damned if you don’t situation, lower it and the vasculitis could act up more and keep it the same and the risk of me catching something that could really be bad is very high. We are only lowering it by 25mg right now. I know it sounds like nothing but it is. If we have to we can always go lower. Just don’t want to drop it too low if not necessary. As of now oncology has not been in yet to see me. 8pm.

I felt really good this morning and by 11:00 I started feeling poorly again. I am staying pretty positive. I will say though at night when I can’t sleep it is horrible. I feel like I won’t make it till morning. I know so dramatic, I am. (laughing) I really can’t stand the nights in this place. I have such a hard time sleeping in my own bed let alone somewhere else. So, yes the nights are not so good. By the way, if and when I finally do fall asleep, watch out!! The lights get flipped on and they are yelling MELISSA, MELISSA I am coming in to check……….blah, blah, blah. LOL Well, I hope I covered everything for now. It is now hurry up and wait and hopefully my counts rise. So start praying people!! (laughing again) I know you are all praying and it is greatly appreciated! I rarely ask for much from anyone but I think I would like some help with dinners for the family. Having my dad or Jimmy go through a drive trough is not only getting expensive but it is not healthy.

******I just had the oncologist come in to see me. (still last night) Instead of rereading and rewriting things I am letting you know he just came in to evaluate me and let me know what he was doing, not recommending. He will call my Doctor tomorrow and let him know. I am SO glad that Dr J demanded that an oncologist see me before doing anything. The oncologist said that with the type of vasculitis I have that if they gave me the neutropenic shot that my body would over compensate. Basically go into overdrive and my WBC count would go way too high therefore the vasculitis would really go haywire. There is less of a risk of the vasculitis going haywire by simply stopping the chemo. Hopefully my body will naturally raise them up by stopping it. Yes I run the risk of things flaring up but not near as much as using the shot. Also my red blood cell count has now gone into danger zone. So I will be receiving a blood transfusion. AHHH! I don’t know why, you may think I am silly but that makes me nervous! It looks as if I might be here awhile.Thanks for allowing me to vent and share my feeling and experiences. Thanks for continued prayers and love!

Appointments for last week

2011-11-17T16:13:00.000-07:00

I am probably going to write two posts today, one for appointments last week and then one for what is going on this week. The first appointment of the week was on Monday with my favorite doctor. (The one that does most of my treatment and the chemo) I think I am going to start calling him Dr. J. Everyone got that…Dr. J. So if you remember from my previous post this is the office that tried to cancel my appointment and reschedule in January. He did not like the fact that his office tried to do that either. I guess I have learned that when something happens like that I just need to stick my ground and do just what I did. He told me to have them talk to him and he would make sure they knew it was inappropriate if it happened again. Anyways back to the appointment. We discussed how I was feeling and I told him my biggest concern was I was turning purple. He then informed me that this was in fact vasculitis causing that. So he discussed upping the chemo. Yes upping. Blah! He tried to look at my recent blood work and urine that I had done about 2 weeks prior to appointment and he couldn’t find it. It had looked like the blood lab lost my labs and urinalysis. He was unable at the time to see my white blood cell count so he left everything the same and gave me new labs to have re done. I was to go back to see him in 4 weeks and we would re evaluate things from there. So I will fast forward to Friday, while at the Mayo clinic someone in his office called and said that there was a very high count of white blood cells in the urine. They were going to send me out a new urinalysis and I need to go get that done when I recieved it. That is how we left it…………. Onto Wednesday’s appointment, it was with the Dr that did the ablation. No big deal there. It seems to have worked for now. Now to Friday’s appointments, it was at Mayo Clinic. I had some pulmonary testing done and then saw a pulmonologist. Can I just say, wow what a difference between testing from my pulmonologist and theirs. Needless to say I got a good lung test done. When I had my appointment we went over the findings and from what they had in front of them things looked fairly well. I had the chest x—ray done a month ago, so that wasn’t as up to date as it could have been but that one looked good. He went on to spend about an hour or longer with me discussing all my medical issues that I have had. Such a nice man and seemed so genuinely concerned. I have to say it was such a wonderful feeling to see this man who had just met me to have such emotion over what was happening to me. I started crying like a baby. Partly because of how nice he was and partly because I think I saw the reality of my situation in his eyes. I couldn’t stop. Kinda felt stupid for a minute, but he put me at ease. Now back to his pulmonary findings, they were not really different from my other pulmanologist so I found that to be a good thing. Now about the testing, he has nothing to compare this test to, so if last year I was much better, he wouldn’t know. We now have something to compare things to for the future. As far as results of the test, nothing was very alarming. There were a few things that read pretty low. (for instance, something read a 60 and should have been at 80) But he said you could see these finding with someone who was anemic. So he feels that is what is causing my symptoms at this moment. Now he also explained with vasculitis in the lungs, I could be just fine in the morning and by night time I could be having lung issues due to the vasculitis. He went on to say, that regardless my treatment is exactly how it should be. So really not very different from what I had known. I feel like I better understand what is going on. I just feel better all around for going to the Mayo Clinic. Even if I am unable to continue care there at least I know I am receiving the correct treatment, maybe not the best bedside manner but I am much better educated with what is happening that I think I will be able to tell them how I feel and why. Which I did do Monday with Dr. J. All of you that have heard me complain about him and his office, just wait for the next posting you will be floored. I was very shocked today to receive a call from him. Yes Dr. J picked up the phone and called me himself! For those who are reading this and don’t know I was hospitalized Tuesday for a possible infection and I am still here do to my white blood cell count being way too low. I will get into details in the next posting that I will work on after this. In between Doctors and nurses and everyone else that comes in here. Actually my “visitors” (dr/nurses/helpers) have just about ceased except for very necessary because of the WBC. My “visitors” yesterday consisted of a janitor who thought I just might need my toilet seat tightened. Another was someone who was checking on the status of my bed. (my bed has a status?) She was curious as to if I liked it and if it was right for me. Well, no. It sucks. By chance do you have a temper-pedic? She laughed. Just thought I would ask. I figured she wanted feedback since she was asking. So these are just a few people who came in yesterday, so hopefully no-one was carrying anything I could catch. My morning started out feeling really good and since then I have really gone downhill. I am really feeling bad again with chills, headache, short of breath and just blah. Anyways I will start on my next posting…….

Appointment didn't happen

2011-11-03T14:24:00.001-07:00

SO, the appointment that I was supposed to have on Nov. 2 (wed) did not happen, so there is no update. (this would be with the doctor that has been treating me all along) They called Tuesday morning to confirm my appointment for Wed. (thank you) I Then received yet another call that afternoon to inform me that……
My conversation with the doctor’s office……….

Her; Unfortunately we will have to cancel your appointment for tomorrow morning and reschedule it. Something came up and he will not make it into the office in the morning. Let’s see……how will January 14 be?

Me; Ummmmm, well that will be unacceptable! (Don’t get me wrong, I totally get how doctors are human and things come up. I understand that these things happen and they have to reschedule, but really?????? Two months away?)

Me; How is it you can put someone on chemo and then just not see them for four months and no blood work ordered either?!?!?

Her; Well we have so many patients that this is what happens. Our appointments are about 2 months out.

Me; Ok, so I am a patient and what happens if I get sick and need to be seen?

Her; Well we would try and figure something out.

Me; ok, well I think something needs to be figured out then. I find it very unacceptable that YOU are cancelling my appointment and you find it completely ok that you are rescheduling it two months away. Added in the fact that I am on chemo (prescribed by your office) and you still find this acceptable. I find it very disturbing. Oh, and by the way I tested my urine today (Tues) and there was blood in it. (I test it at home regularly because this chemo can cause bladder damage and I was told if I had it test positive for blood to call his office asap and let them know.)

Her; Well why didn’t you call us?

Me; Well because I HAD an appointment in the morning and figured I would let him know then. I didn’t see the big deal for a difference of ten hours.

Her; Well that changes things, how about Monday at 11?

Me; I laughed…..(amazing how things change, how fast they can now get you in) (and really why would calling you have made a difference??? You still wouldn’t have been able to see me)

Her; Just so your aware you will have to wait for awhile because we are “fitting” you in.

Me; Ok, well so you are aware…you are not doing me a favor by “fitting” me in on Monday. It is actually an inconvenience that I have to rearrange my schedule to accommodate yours. I understand that things happen but please don’t act as if you are helping me out by squeezing me in Monday. I have had my appointment scheduled for two months now, so do me a favor and stop acting as if I am the problem.

Her; I wasn’t trying to make you feel that way.

Me; I believe you were, it doesn’t really matter at this point. There is nothing I can do with you all cancelling appointments. I will see you Monday. Thanks

Her; Oh, thank you Melissa

I really felt like singing to her…..La, la, la, whatever…La, la, la, doesn’t matter…la, la, la ,oh well…la, la, la, ……….Maybe she would have gotten me in sooner, because she thought I was losing my mind. I really try to not be rude but I am tired of this doctor acting as if he has me on baby aspirin. I will no longer put up with it. When he started me on chemo he told both Jimmy and I….This isn’t good. This is not good, he probably repeated that 5 times and proceeded to tell us all these precautionary things and if I ever had concerns or got sick or something happen to contact them immediately. Blah…blah…blah… Is what he should have said because he really doesn’t act as if he is concerned or cares in the least. When I had the pneumonia in April I called his office 7 times in a week and NEVER got a return phone call. I ended up in ER and then hospitalized. So, forgive me for venting and but I want to make it clear why I am tired of him and his office. I can only hope and pray that the Mayo Clinic keeps me. So hopefully I can give you a report/update on Monday. I am thinking because of the blood in my urine that I will have to stop the chemo for a time. I do know that it can cause severe bladder damage and cause the bladder to start bleeding. We will see what he says. Part of me hopes to stop it for a while, it has taken a toll on me and I think my body needs a break. The other part of me is concerned that if we stop the chemo everything will go haywire again. I will trust that the Lord has his plan, and I will follow it….(with a few questions, of course…lol)

“Blessed are the peacemakers, for they shall be called sons of God." Matthew 5:9

2011-10-29T16:21:00.001-07:00

I would like to start by saying my thoughts and prayers are with the Glendale Police Dept. and Officer Jones family and friends. Most importantly his wife and children. My husband started his career at Glendale PD and well, it hit very close to home. He did not know this Officer, but that does not matter. When an officer is involved in this type of incident whether we know them personally or not it hits home and and hits hard. It effects every agency as if they have lost one of their own. The last few days have been filled with violence and disregard toward our police officers. It is senseless and simply from a wives point of view, not worth the pay check that you all bring home. In honor of Officer Jones, let us never forget the daily sacrifices our law enforcement officers make in order to protect our families and neighborhoods. May you Rest in Peace........"Greater love has no one than this, that he lay down his life for his friends." (John 15:13)

With that being said I haven’t been on here in awhile so I figured I had better give you something. For everyone that I was able to meet and speak with last weekend at the Gain event (you know who you are, if we spoke) It was a pleasure to meet you all and thank you for your kind words and encouraging thoughts. I was nice to get out of the house for awhile and enjoy the evening. I am hanging in there. I have not had any appointments since I last wrote. I have one next wed. So I will update after that too. This one on Wed. is with my original doctor who has been doing the treatment all along. If you remember I was advised from Mayo clinic to continue treatment as if I have never been to the Mayo. So that is what I will be doing. I have some new questions for him so this should be fun. This is the man that had some very smart ass comments back to me last appointment when I had questions. So we will see what kind of responses he has this time. I know I shouldn’t be negative about it, but it really gets old. I think that all of this is taking a toll on me, emotionally and physically. For one I think ten months of daily chemo has taken its toll. Not to mention what the Mayo doctor had said to me about the fact that I am on the highest daily dose of chemo that he has seen and would never take it any higher. It has caused to me reconsider some things. I was always with the mindset that if I needed to be on this than let’s do it. I can handle it for as long as needed. But I am starting to wonder if I am already on the highest dose, what the heck are we gonna do if I have a flare up of some sorts. Then what? If you remember back my doctor wanted me to wean completely off the steroid before changing the chemo to a less invasive medicine. (that was the goal) So at our last appointment he wanted me to go from 20 mg to 10 mg of steroid before my next appointment. (nov. 2) He had always decreased me by 5 mg every two months and I had handled that well. When I went from 20 to 15 mg, I started to feel like my lungs were really flaring up again. So I decided I was not going to decrease the dose again. So I have been on the 15 mg for the last 2 months and did not decrease it again until 2 weeks ago. I was starting to wonder, if my lungs are already affected by the vasculitis then they are weakened. So my thought is that this chemo is really kicking my butt lately. So, is my lungs taking the brunt of it? They are weak and damaged already so I am really feeling it in my lungs. They are acting up just because I am tired and my immune system in nonexistent, not because the vasculitis is acting up. I am not going to know this for sure unless I continue to wean off the steroid and get off this chemo and then see what happens. At that point we will have decided what to do if it all acts back up again. So, I did decrease the steroid to 10mg two weeks ago. I have not noticed too much of a difference with my lungs, so that is good news! One thing that I have noticed though, is that I am turning purple very often. Yes my skin is turning purple, probably not a great thing. I still have to look at this as encouraging progress. In January when I was hospitalized I was on 1000mg (yes 1000!!!) of daily steroid so I am now at 10mg!!! That is huge; really for me it is extraordinary!! I have been known to be on a daily dose of 80mg for months and months so this is good. I have to see this as progress and I guess we will figure out why I am turning a beautiful shade of purple.

Jimmy and I happened to watch the show “Mystery Diagnoses” over the weekend and the woman they had on there was having very similar things happening that I have had. Jimmy and I both kept saying OMG, it is vasculitis. Well long story short they called what she had something else. We were both like no way, it has to be vasculitis. So I looked up the diagnosis that they gave her and well, basically it is vasculitisvasculitis. Not that it tells me anything and it certainly doesn’t change my treatment at all, there is still no way to fix it. They just were able to figure out that a protein in her blood has caused this. SO this is one question I will be asking. Have I been tested for this protein? More than likely I probably have, but one thing I have learned over this past year…….you never know…..don’t ever just assume something has been done. I really, really want to know why I have this, what caused it. It almost always secondary to something else, something………….what?!?!?! It drives me nuts. I will leave you with something I just read that Maria Shriver wrote the other day that I happened to read……..”One thing I’ve learned deeply: if you ever want to feel better open your circle, be vulnerable, ask for help, say you need it, allow it in.” For me those were powerful words. I do not do this, and well……I need to.

Mayo Clinic

2011-10-12T15:52:00.000-07:00

Well, the Mayo Clinic was a nice experience. It was nice to have a doctor sit and listen and really communicate with you. We spent about a hour and a half with him. He asked all sorts of questions and went through a lot of my old medical copies from the past 10 years. So glad I decided to bring it all with me. Basically just going over what I had and all the recent medical reports from the past 10 months, he is pretty certain that I am on the correct medicine. (cytoxan (chemo) and steroid) His one concern is that since lowering the steroid dose my lungs have acted up again. He said that I am on the highest daily chemo dose that he has seen/put someone on. He has had very few people on that high of a dose and wouldn’t go any higher. The goal for him as well would be to wean me off the steroid and then switch the Cytoxan to something less harsh. So, if my lungs are acting up already and we have 15mg to go before I can get off the Cytoxan then we have a problem. His recommendation at this point is to run a few test and make sure nothing else is going on that we haven’t found yet. Rule out me having anything else before we decide on what is next. I had a large amount of blood work done yesterday and a chest x-ray. So in November I will go back and have some lung testing done and then see their Pulmonary doctor. I will then return to see him on December 12 and we will discuss his findings, if any. If he feels as if my care/treatment needs to change then I will be switching all my care to the Mayo Clinic. If he feels like I am getting the best care already and nothing needs to change and they haven’t found anything else wrong then I will continue my care with my doctors I have now. Reason being is, that I got myself in, so they evaluate me and see if my care is not how it should be. If they feel it needs to change or something is not right then I will be able to be seen by them. If I am already receiving adequate care and nothing needs to change then they consider that I am just fine on the “outside.” Basically if they allowed anyone and everyone to be seen there then it would be completely over run and not as quality care as they aim to give each patient. Which is fine, I wanted that second opinion and I am getting it. He is also running test and making sure nothing else is going on so I am happy and content with that. So, with that being said I will continue treatment with my normal doctor and pretend like I never went to the Mayo until I go back and see him. At which point he will decide if I will be staying at the Mayo clinic or staying with my other doctors. My next appointment with my “outside” doctors is on November 2. So as of now I will just take care of me and take notes as to how I feel and what is going on. He did say to me that if I have had Vasculitis for 10 years, like it looks like I have, and just recently started being treated for it in January, I look darn good for it. My body has dealt with it very well if that is the case. Thank you Jesus…I guess??? LOL He said he is shocked I am not FAR worse off than I am. We also discussed the possibility that the lungs acting up (wheezing/shortness of breath) could possibly be a side effect of being on chemo for such a long period. We are not ruling that out, thinking about it, it is such a strain/poison on your body. It could very well being causing the lungs to have a harder time functioning especially since the vasculitis is in my lungs. Makes sense, it would make weak areas weaker. I am very comfortable with my appointment and what is to come even if that means my treatment remains the same. I am mentally feeling better just knowing that from our appointment yesterday that his treatment would more than likely be the same. Hopefully nothing changes to dramatically in the next few months. I am definitely feeling blah lately. I go from doing well one day to watch out the next. More than anything just stomach issues; I am sure from the chemo. I have appointment here and there the next month with different doctors so if there is anything else to report I will.

The kids are on fall break this week and both have friends over today, lord help me. No really, their friends are sweethearts and very well behaved. McKenna is doing/feeling better. I haven’t looked into any counseling yet, haven’t had time. She seems to be doing well, but yes she has been home with me so…….They both got excellent grades, Jacob made High Honor roll!!!! All A’s and 2 B’s!!! McKenna as well with A’s and B’s too!!! I can’t complain they are doing better than ever in school so that is great!! McKenna is looking forward to signing up for Flag football soon. She can’t wait for it to start and to have her favorite coach Mr. Shawn Bradford!!! Can’t wait!! (yes we realize we have 2 months before it starts) Hope everyone has a fabulous rest of your week!!! Much love!

Yesterdays procedure

2011-10-05T17:37:00.000-07:00

My procedure/surgery for the ablation went ok yesterday. I actually felt very comfortable when I met the Anesthesiologist, very smart woman who was questioning everything. She knew very well that I was a high risk and took every precaution necessary. I have Addison’s disease as well as the Vasculitis so my risk during surgery or simple procedures are a little higher. She immediately gave me an extra dose of steroids and reassured me many times she would not leave my side. With the Vasculitis being in my lungs she also gave me a breathing treatment prior to as well. They also took the extra precaution of incubating me during the procedure as well. She really had me at ease when usually I am not. I am so glad she took these precautions because come to find out I would have definitely needed them. Once they got me to recovery room my pulse ox kept dropping to the 60’s and 70’s. My blood pressure would then sky rocket to 180/100. Basically the stress of the surgery on my body was taking a toll. Had she not took the precautions that she did it probably would have been a lot worse. So needless to say recovery for an hour turned into about 3 hours. It was a little nerve racking to see what my body was doing. I can’t imagine what it would do in a very serious surgery. Let’s hope I don’t need to have anything else done for awhile. Obviously my body is a little fragile. I am just glad it turned out all well. I did however have some nerve damage done to my lower lip. I guess when they incubate you (tube down throat) they can do some nerve damage and cause your lower lip to be numb. Well my lower lip is numb, and still is. We will see how long it takes to go away. I know I already have nerve issues because of the Vasculitis so this may be why it has happened as well. All in all, I am feeling ok today. My throat is on fire. I think it is more uncomfortable than anything else. I have been running a fever today as well, which is very normal for me because of the stress to my body. The vasculitis is what causes this as well. It really kicks my butt. What is no big deal to a healthy person can be life threatening to me and my system. I cannot stress to you enough how happy I am that I got into the Mayo Clinic. It cannot get here soon enough. Next Tuesday October 11!!! Just when I think things are going well and I am feeling better everything kind of takes a turn in the other direction. I just need that opinion of someone else. I would give anything to start feeling decent again. Although I have forgotten what decent feels like, it has been so long. I have also had Miss McKenna home again. She swears she doesn’t stress over me but every single time I have something going on something happens with her. I think it might be time to get her into a counselor. I could be jumping the gun but I just don’t want her bottling things up and not talking about them, if she needs to. The school called as I was leaving to go to the hospital yesterday. She had a temperature, so someone needed to pick her up. Thanks Elaine!!! Jimmy took her into the doctor today and she ended up having a UTI which she has had issues with, in the past. I think with her, she stresses her body out with worry and causes these things to happen. I don’t know, can you stress yourself out and cause a UTI? Anyway, she is my talker and we talk about EVERYTHING, but I think she is holding some things in. So I will look into something for her. She has two half days left of school this week and then she is off for a week for fall break so that will give her some time to feel better. Jacob seems to be doing great. School is going great and his grades are supposedly awesome……..We will find out for sure this week. Jimmy is Jimmy, busy and but ALWAYS there for me. Love him more than ever!! Thanks for all the prayers and love!! I will keep you updated.

Short update

2011-09-26T16:25:00.001-07:00

Haven’t been on here in awhile so I figured I had better write something soon! I did end up at the hospital over the weekend. I was having severe stomach pain. Like I have never experienced, I figured it’s better to be safe than sorry. I never know what is really going on. Although with this RARE disease either do the doctors, I am finding out. (I was told again, “wow, do you know how rare this is?”)My pain tolerance is very high. (VERY HIGH) With that being said, good Lord I was in pain. I was given 2 Percocet that did NOT faze me in the least bit. (I think they were fake…LOL) They finally shot me up with some good old morphine and something else (I didn’t even care at this point), and relief! They ended up doing an ultra sound and an internal ultra sound as well. So basically he was not sure what was causing the pain. He said one of two things could be a possibility, One…..the birth control pill they put me on to stop other issues is causing the pain or two……the vasculitis is effecting the uterus and causing the pain. He can’t be for sure. I am going to make a well educated guess and say that it is the birth control pill. I have not been on one in years (atleast 5) and this was newly introduced last month. It is also a higher than normal hormonal pill used for people like myself not so much just for “birth control.” So I am thinking that it is definitely the pill. I could be wrong but I am going with that. I am having surgery on October 4 so hopefully I can stop the pill immediately after this. So I guess we will see if it is for sure the pill or not. I guess if it continues on then we will look into it being vasculitis related. October 11 cannot come soon enough. (Mayo clinic appt) While at the ER my white blood cell count is back down to a 3. Not good no, but I think that’s kinda where we want it. But how low is too low???? I have so many questions. And who wants to walk into the ER with a white blood cell count of 3?!?!?! Crazy! Talk about asking to catch everything. I had my pretty mask on!!! And they are very good there. I don’t even fill out the little form on the front desk, they immediately take me back. Although, I did make some women very upset, she was not happy that they whisked be back there. Who the heck is she and why doesn’t she have to wait?!?! LOL Sorry, lady….really I am, but I would gladly trade you my health issues for yours. That is what I should have said. Maybe it would have shut her up, do people realize how dumb they look when being so mean? I think that the vasculitis has definitely been flared up a lot lately. The doctor wanted me to wean myself down to 10mg of prednisone by our next appointment. Well that is not going to happen. I went from 20 to 15 and everything went haywire. So I have left it alone. I will NOT be decreasing it anymore than the 15. It is a little discouraging because he wants me completely off the steroid and then we will look at decreasing the chemo. I can’t wait to get into the Mayo clinic to see what other options (if any) I have. I will be ok, if they say there is nothing else to do or try but I just want that second opinion so I know that I am definitely doing all I can do. I am hoping for someone to better answer my questions as well. I understand how “RARE” this is…I get it, but someone has got to know something more than what they are telling me. You would think anyways…..sometimes you start to lose faith in the medical system. I will keep you posted J

A few updates to some previous postings…..

2011-09-16T17:30:00.001-07:00

I had mentioned in a previous post that I was waiting for Cigna to return my call concerning some type of medical advocate/case manager. Well they are just that, a case manager. Wow, what an in lighting conversation that was….I swear, they are dumber than a box of rocks over there. When returning MY phone call they asked to speak with Jimmy. I told them he wasn’t here and if I could take a message. She informed me it was Cigna, and if he could please return their call. I asked what this was regarding because I was waiting for a phone call back. She proceeded to say, “No, you can’t.” Well all righty then…..I then told her this was his spouse and I was waiting for a return phone call from them. She then said to me, “well, why didn’t you say who you were?” Well, I wasn’t given the opportunity!?!?! She then told me she was returning HIS phone call regarding questions about a case manager. I advised her again that I was the one calling to inquire about this not my husband. She again tried to correct me and tell me that it was not me…..seriously are you arguing with a customer about who called your company to ask a question…. Who really cares who called just please answer my questions. I finally said to her that it really doesn’t matter who called I just needed information about getting a case manager and what they did for you. (if it was something that would benefit me) She asked me, “well what do you want us to do?” Um…I don’t know. What is it that you do? And how do you help your patients? She proceeded to tell me that you had to meet certain “qualifications” to have a case manager. If I had met these “qualifications” someone would have already contacted me. SO I asked her, “exactly what are these qualifications?”, because short of being dead I am pretty sure I “qualify.” Her “qualifications” included…. (I am listing the ones that would have something to do with me) She did not list many more and you only had to have one or two in common with yourself.

1. having/needing home health care

2. Being on certain medications (steroids, chemo) (and others these are just a few she named)

3. Having multiple doctors caring for you

4. Needing help coordinating these doctors.

So, I was like “well I definitely qualify for these services.” I have had a home health care nurse for a year and a half and I am on some of the medications that you have mentioned and I definitely need help coordinating these doctors and just someone to bounce questions off of. She then really had to back pedal and stumble over the choosing of her words. She basically told me at this point that a case manager really didn’t do anything and it would not benefit me. They just manage certain aspects of your care. She could not see how anyone could help me with anything. So I informed her if they were anything like her she was probably right. So basically I am gathering that a case manager does nothing. Absolutely nothing….She never did really tell me what they do for you. As we ended our conversation she told me if I had any more questions she could answer or anything else she could help me with to take down her number and make sure to call her back. Well ok then, I will definitely make sure I do that. She was such a HUGE help to begin with I am not sure how I made it through all this medical crap without her. (did she ever answer any of my questions to begin with?) I just have to laugh and make fun of the situation, I just don’t understand how they can tell you they offer a service for their patients and then really can’t tell you what that service does for you. I qualify, but somehow I don’t??? Oh, well I am not any worse off than I was. Just more frustrated maybe.
I did make it in to see the gynecologist this past week. Very much liked this man. He was very informative and has seen many patients that have been on chemo and having some of the same issues I am having. (premenopausal/hemorrhaging) He agreed with me that this was going to have to be long term treatment for me (the chemo) could even be life time or on and off for the rest of my life. He gave us some options that included surgery to stop this permanently. At this point a hysterectomy is NOT an option way too many risk factors with that. He suggested ablation, which is what my other doctor had said. We discussed the risks that it would have for me. He was very much over protecting of what and how he would do things. He told us that it is usually an outpatient procedure but with me he would probably keep me in the hospital for a 24 hour period just for observation. He then also said that he normally just sedates people but with me he thinks he will totally knock me out (incubate me, tube down throat) He said he does not foresee any issues but also does not want to be unprepared in case something does happen. I actually applaud his concern and need to be over careful. Most doctors always seem so unconcerned. I was pleased that he is going to such length to make sure I am well taken care of in case something goes wrong. One would wonder why take any risk at all, why even do this procedure. Well for me and my disease this will most likely be something I have issue with for the rest of my life or until menopause happens. He informed us that unfortunately he cannot determine what my body will or won’t do. I could hemorrhage like this for some time before it ceases for good. It is becoming a medical issue for me as I am losing way to much blood. If it continues on much longer I would need a blood transfusion. So it has been decided that this is what we will do to stop it. I have an appointment Monday with my regular pcp to get the ball rolling on testing he wants done before the surgery. Everything from ekg to chest x-ray and some others. Once those are done and everything comes back fine we will proceed with scheduling the surgery/procedure. I am thinking this will take a few weeks to get set up and take care of. I am thinking I will probably be seen at the Mayo Clinic before this (Oct. 11) so that will make me feel even better, just another opinion as to yes go ahead and get this done or no, not a good idea. Not that I am questioning it, I am just so nervous with anything I do lately. Fear……I am starting to hate that word! I fear things not going good, I fear not being here next week, I fear not being here next year. I fear and question pretty much all I do anymore. I let it get the best of me at times, I think anybody would. I know your suppose to be strong and put your trust in God and know that his will is being done. I know he is with me, I know he is carrying me through this but I also am not gonna lie and tell you that it doesn’t scare the crud out of me sometimes. Thanks for the shoulder again……

A Bit of Validation for what I knew all along

2011-09-08T13:16:00.000-07:00

(started writing this on September 6, took a break and finished today)

I don’t know if I should be happy, mad, sad or what. I feel like screaming at the top of my lungs. You remember in my last few posts talking about my pulmonologist and the way he was acting. Like something was really wrong and he really just acted like he was SO concerned all the sudden and I was wondering why. He never seemed concerned in the past and everything was no big deal. I was ALWAYS asking if this was Vasculitis in my lungs and he kept saying he couldn’t be sure without an open lung biopsy. I always found it odd that they were just so nonchalant about things. Well, as you all know I went for a CT with contrast last week and got the news today. I walk into the office and he is all excited to give me the news that the vasculitis is clearing up in my lungs. WHAT?! What did you say I have in my lungs???? OMG, are you kidding me?! I immediately said to him that he needed to send a report over to the other DR. because he is under the impression from YOU that it is NOT vasculitis in my lungs. He just read that to me last week. So, now I sit here and you’re telling me it IS vasculitis in the lungs.( Let me be clear, I knew all along this WAS vasuculitis in my lungs. You know that gut feeling you have. I knew what it was, that is why I was so adamant about getting him to say yes it was or no it wasn’t.) On the up side to this, I KNOW for a fact that the chemo IS working!!! No more second guessing if it is working or not. It is, and this proves it!!! With the higher dosage of the chemo, this is when we saw a huge change on the ct scans which is how we can definitely say without a doubt that this is vasculitis in the lungs and that the chemo is working. The Dr. said to me, “I thought you would be so happy?” I am happy that FINALLY, FINALLY I got you to tell me what I thought all along. I am happy that this is starting to clear up, but with that being said I have had a hard time this past week with wheezing and out of breathe again. The Dr. last week lowered the prednisone so I am thinking that maybe I am having a bit of a flair up with him lowering the steroid dosage. I don’t know, but I am keeping track of it all. I am writing everything down and keeping good notes. With the definite knowledge of this being in my lungs comes a new diagnosis of sorts. Depending on what exactly the vasculitis effects (what organs) there will be different names. So I am not sure it will be the same thing. It is also very scary to know it is involving the lungs, this can be deadly. From what I know left untreated your life expectancy is 5 months, with treatment 88% of people live to the 5 year mark. So what after that? Oh, do I have a lot of questions. What is my long term treatment and what exactly is this is going to involve for long term. What is my long term prognosis? What frustrates me more than anything about this pulmonologist is, what if I wasn’t being treated with the chemo, what if I had no other symptoms and only had my lung symptoms? It took him 6 months to say to me, it is most definitely Vasculitis in your lungs. According to statistics I would be dead. I know I should not think about the “what ifs” but it is hard not to. It has taken me a few days to let this really sink in. Last night I had a sleepless night of sorts, such an uneasy feeling I had and could not shake it. I don’t really think of death often but I am really acknowledging that this is a deadly disease and one that could take me quickly if I don’t get the proper treatment. I can’t help but wonder if I am doing all I can as a patient. I am my only advocate when it comes to my health and well being. If I don’t help myself no one else is going to do it for me. I am VERY proactive in researching and trying to figure out exactly what this involves and what type of medication is used for treatment. I am on a very strong combination of medication to help maintain/stop this disease from progressing. I feel as though I am doing all I can, but with that being said I have spent the remainder of the week on the phone with doctors and insurance company to see if there was anything else I could do. The only suggestion that I came up with was the insurance company telling me to look into the Mayo Clinic out in Scottsdale. She than advised me that they couldn’t get me in (appointment) a doctor would have to. You have to be referred there by another physician and then they either accept you or not. Well, I got off the phone with her and called the Mayo Clinic. I was on and off the phone a few times with the gal who helped me. She was VERY helpful did some poking around for me and got me in with a doctor that actually wants to see people with vasculitis. He is very much involved in different research for vasculitis as well. She informed me that they have over 350 doctors on staff. Different specialist for different needs of the patient, what is great about this is that all these doctors who are involved with your case (disease treatment) actually meet and discuss you. Trade notes and treatment and decide what is best for you. Can you imagine?!?! Doctors who communicate?!?!? LOVE IT!!! So, with that being said I have an appointment on October 11. Which I heard was getting me in fairly quickly. So Thankful!! I will just be glad to get a second opinion and just see if my doctors have been doing this correctly or not. I just want another opinion to make sure I am doing what I should. It will be comforting. At that point I will decide if I will continue treatment with my current doctors or if I will switch to the Mayo Clinic. We shall see what happens. I do know that I need to start putting more faith in to the Lord. It is very easy to stray from him and get lost, I kind of feel like I have done that these past few weeks. I need to put my eyes back on him and trust that I will be ok. When faced with such tremendous stress and unknowing circumstances it is easy to become scared and lose sight of what is really important. I need to get back to letting him carry me thru this. Please continue to pray!!! Love you all!!

It can only get better, right?

2011-09-03T10:44:00.000-07:00

I had a follow up Wednesday with the Rheumatologist; I left feeling very unsettled and upset. I am just a little sensitive at the moment I guess. We came to the conclusion that the Chemo is definitely working at this higher dose. I/we have seen more results in the last 2 months since upping it than we have the entire time. So that is good news. I feel like crap because of the chemo, but it is really working with trying to get the vasculitis in check. My biggest question for him this appointment was, will my veins get better? I have had such a hard time with blood draws and my veins blowing all the time. The reason for the port being there, especially lately, I am having to use the port for ALL blood draws and testing ect. They don’t seem to be getting better. His answer was, the veins have nothing to do with it!?!?!? What?!?!? When I was hospitalized in January I had a vascular surgeon assigned to me and I then had many appointments with him there after as well. It was told to me at that point that my veins are no good. They are so inflamed and irritated from the vasculitis that this is the reason they are blowing and people are having a hard time drawling blood. At that point it was decided between many doctors that I would have a port placed because I needed a lot of intravenous medication and it could not be administered without it. On top of that all the blood work that was going to be going on, it was a fact that this was going to go on for awhile and that my veins were not just going to get better over night. Also taking into consideration if something were to happen to me (car accident, or medical emergency) no one would be able to get vein assess in an emergency, so it was decided that it was definitely needed. So when asking the doctor yesterday if the veins were going to get better, and him answering me with, this has nothing to do with your veins, I got frustrated. I would just love it if all these doctors could be on the same page and all agree on certain things. I did try to ask why he felt that way. He told me that people are just lazy and they are not trying hard enough to find a good vein. OMG, are you serious? You can see my frustration. Yay buddy, the surgeon at the hospital was being so lazy and she didn’t want to find a “good” vein. So instead she prepped me for surgery and had to cut into my neck and jugular vein while I was awake to get vein access just to be able to do the port surgery. All because she was lazy and didn’t want to find a “good” vein! Yep, that makes sense now, thanks for clarifying that jackhole! He also asked Jimmy if I used recreational drugs that could be causing my veins to do this!!!! Why yes I am you idiot....Yes, ask my "officer" husband that! No one in the medical field can find a vein that is usable, but I sure can when I am shooting up! Jimmy took this as he was just joking around. I am sorry you don't joke around like this with a patient. Seriously I am not laughing. URG……

I am also very anemic at the moment. My blood counts are low in that area. He showed no concern with this at all. I am having some female issues that are not helping with that situation either. (issues that have lasted 3 weeks)He told me to go see my gynecologist. Now don’t get me wrong, that is fine I will go see another doctor, but my thought is the chemo is what is causing all these other issues wouldn’t you help fix these issues? Apparently not, so I got in with her Thursday. She was very concerned with how low my blood count levels were. She immediately sent me over to get an internal ultrasound done to make very sure that it was indeed the chemo that was causing these new issues. Which it was, It did show that I had some fibroids but she didn’t think that was causing any issues at the moment. So as much as she didn’t want to start a birth control pill, we did. Her reasoning for starting it was to hopefully stop the bleeding fast because I can’t afford for it to get any worse. She also wants to discuss a more permanent thing such as ablation or something along those lines. Really didn’t want to throw in a birth control pill at the moment because it is only going to add to all the hormonal issues that the chemo is already causing. For now it was our only choice. Sorry if that was too much information for some. We also discussed my appointment the day prior with my doctor and some of the things he had said. A lot of it didn’t make sense to her either. She wasn’t sure why he would say that this has nothing to do with the veins. It has everything to do with them. She told me to get a second opinion. Which is not a bad idea anyway, Jimmy and I had discussed this a while ago. So I am going to attempt to get in with someone else. Just not sure how long that will take. Also trying to get records from the other doctor, shouldn’t be too difficult because I do ask for copies on everything. After the week that I had and the frustration that went along with it, I called the insurance company to see if they had some sort of medical advocate that I could use. She told me that if I qualified for one it would have alerted them and one would have called by now. She looked up our account and informed me that because the kids have asthma they qualify. HAHAHA!!! OMG< seriously?!?! I am on chemo and have a very serious disease; you would think I would qualify without having to ask. She said they would review my medical stuff and get back with me. Well ok then, I will be waiting but I am not holding my breath on that one. So, I am trying to just relax, I just feel like I have no control and it is so frustrating. I am tired of it all. I am sure I am just going thru a funk, but I really understand why people throw their hands in the air and just give up. It gets really, really old and really not many people understand what you are going thru unless they have been there. Thanks for all the prayers, keep them coming!

Thank You

2011-08-30T19:16:00.000-07:00

I forgot in my earlier post to say thank you to two very kind people. Connie and Joe, from the bottom of my heart and the bottom of Jimmy and the kid’s stomach, thank you so, so much for the dinner last night!! You don’t know what it means to me. As a mom, and one that stays home at that, I feel so bad that sometimes I just don’t have it in me to cook a good meal for them. I am really dragging lately and it was very much needed. It is not the first time you have done this so I really did want to thank both of you for going out of your way to help. You are both so awesome!!! Have a safe trip and I will keep you and your family in my prayers as well.

Completely lost it today :(

2011-08-30T16:26:00.000-07:00

So, I totally need to vent here, so forgive me. I am so frustrated and irritated and upset. I had to leave the hospital today cry my eyes out then go back to complain. I know I can be sensitive at times and I know I will have my days when I feel like everything is crashing down but really if people could/would do their job. I had appointment yes an appointment today at the hospital to do the CT with contrast and blood work. Now I have to have it done through the port. No ifs ands or buts about it. So I am there 20 minutes early for my appointment. I get called back to radiology to do CT and the guy looks at me dumb founded that it has to be done through the port. Well it is written all over the script and that is why I have an APPOINTMENT. So, he informs me that he will have to find somebody to access it because he can’t. Which is fine and I understand only certain people can access it. Now I am so upset at myself, I am laying on the table when he comes in and he tells me to look that way (away from him) and hold my breath. (he is getting ready to access it) He then proceeds to access it and doesn’t get it the first time, pulls out the needle and tries again with the same needle. Now I look over to see what he is doing and he has no gloves on!!!! And he didn’t clean the area before he accessed it!!!! OMG, really?? I am about to lose it at this point. He gets done and we do the CT, and we left it accessed so I could go do blood work next. I go sit in the waiting area for blood work. I get called back and she also looks at me dumb founded that I have a port and that is what we have to do blood work through. She again says, she can’t do it and has to call for someone else to do it. He comes in (he puts gloves on) does the blood work and tells the lab girl that he will need saline to flush the port. I then ask, don’t you need heparin too? (all ports need to be flushed with heparin to keep the line open, so it doesn’t clot) He says, no. It is now their policy that they do not flush ports with heparin unless ordered by the DR who is ordering the blood work. Are you serious? If this is a new policy don’t you think you should tell doctors that when they call orders in. Ok, and what am I supposed to do now?!?! I am sitting here with a needle in my chest? I also had to argue with him to take it out of my chest too. He wanted to leave it in. I am like are you serious? I am done It needs to come out I am not leaving with it in my chest. He finally took it out, but I did not get it flushed with heparin. I have to call out my home nurse to come fix their problem!! I just had this port replaced two weeks ago because it did not work, I am so frustrated with people who don’t know what they are doing and don’t care. I am also so mad at myself for not paying attention better when he was accessing it the first time. You would think at a hospital I wouldn’t need to be so attentive to what they were doing, especially when only certain people are able to access the port. They are supposedly trained for such things. Apparently not…..Now mind you my appointment was at 10 am. I did not leave till after 12:30 because they were so stumped as to using the port. I left in tears, cried my eyes out. Took McKenna to her Dr appointment and then went back to the hospital to put in a complaint. I had to compose myself before I could go give them hell. The man I talked to was of course very nice and appalled at what took place. I should be receiving a phone call back as to what will happen with my complaint and what I need to do in the future. Seeing as I will have to have this done periodically. I am still a little dumb founded as to what happen and just really upset with myself as well. I guess you live and learn, but you would think with everything I have been through I would now better. I am one of those that ask way too many questions, and question everything anyone ever does. The one time I really needed to do that I didn’t. Well, you can bet next time I will! I will now be relentless. Hopefully my nurse will be able to make it out today so this doesn’t sit to long with no heparin in the line. AHAH! Thanks for listening, I really needed to vent today and just get that out. I go in for a Dr. appointment tomorrow so I will try an update soon on that. :)

Tired of being tired

2011-08-28T14:09:00.000-07:00

Well little Miss McKenna ended up missing 3 and half days of school already. I ended up taking her to the Dr. on Monday and she has a double ear infection. She hasn’t had an ear infection since she had her tonsils removed years ago. It was a little surprising to hear that. She is feeling much better now and hopefully that will be it for awhile. Although when I picked her up from school Friday she informed me that a student in her class threw up all over the place that morning. Lovely, just what I wanted to hear. Have I told you how much I hate school?!? I am worse than the kids. I didn’t like it when I went and I don’t like that my kids have to go. I know I am crazy, but it is true. I would rather keep them home forever. I also realize that it is not wise to do that to them either. They NEED to go and learn how to deal with the real world. For some people home schooling works but in my opinion I would be doing them no favors by not allowing them to experience life and how to deal with and in certain circumstances. But I am allowed to complain at timesJ

Jimmy and I also celebrated 16 years of marriage on August 19. I am truly blessed. Jimmy,I love what you are, what you do and how hard you try. I've seen your kindness and your strength. I've seen the best and the worst of you. And I understand with perfect clarity exactly what and who you are and I couldn't be more proud to call you my husband and best friend. I love you to pieces Sweet Cheeks!!

As far as I am concerned, I am doing fairly well. I ended up having to call my nurse out to the house last Friday. (2 days after port replaced) I had a feeling that it was becoming infected. It was very red and a little warm to the touch. She agreed and I started taking an antibiotic. It seemed to have cleared up pretty quickly after starting the antibiotic. You would think seeing that I am on chemo and steroids both of which make you more prone to infection they would have just put me on one. But, no. That would be too easy now wouldn’t it? I even ask, but no, let’s just see what happens. It's not their body so what do they care. I get frustrated, I know what is going to happen before it even does, you would think these doctors would act like they care a little more than they do …..even if they don’t. I postponed all my testing and blood work for this week. I wanted to be sure that it is all healed or well on its way to being healed before anybody touched it. I go to the hospital Tuesday for CT with contrast on the lungs and blood work after that. I have an appointment on Wednesday with Dr. Starr (Main guy, who is doing all treatment) we will see how things look to him and compare notes and go from there. I postponed the pulmonary Dr. until September 6. Couldn’t get CT done in time so had to reschedule him then. He is all the sudden being very interested and very cautious as to what he is doing and how he is comparing different scans. Which is great, don’t get me wrong, he has just never seemed too concerned. Now all the sudden he is. I am glad he is finally waking up to the fact that this is a little serious, or is it something else? Makes me wonder…… just a little uncomfortable about that. I will be asking a lot more questions this appointment that’s for sure. He thought I asked a lot before, just wait. I am more curious as to why he is finally acting concerned. What has changed? I guess we will find out. As far as anything else, I feel like I feel a little worse than normal. Very, very tired and just cranky. Poor Jimmy, I am not the easiest person to get along with lately. I really think his patience with me has been tested. I feel bad. I try to just deal with things but some days are hard. I pray that I can get better with dealing with certain things. Some days are just fine and others not so much. It is frustrating to not be able to the things you have always done. Some days I am ok with that and others (more often than not) I am not. Then there are those days that I just do it anyways and I really regret it. I end up worse than I was. I know it will all work out the way it is suppose to. I am trying to let go and let God….I have a control problem J

Port is fixed!

2011-08-19T09:28:00.002-07:00

Wednesday I had an appointment at the hospital to fix my port. What was supposed to be just a quick procedure to fix my flipped port ended up being a 2 hour surgery. The plan was to go in to surgery and I would stay awake. She would numb the area and just flip the port back and stitch back up. Well once in there she found that the original port did not work. Also the site that the port was at was not going to work. The original port had moved around so much it had caused a big area where she would be unable to stitch the next port into place. The original port was never stitched into place so it was able to just move around. So she had to remove the old one and place a new one into a new location. Which meant, I got knocked out and everything fixed. Hopefully this will work out and not cause any issues. I am doing well. Just sore, the first time my port was placed I was in the hospital and hooked up to morphine so it was no big deal. Not that it is killing me, but it is very sore. And do you realize how many neck muscles you use to sit up??? Good grief, I feel them all! They also have to cut into the neck (jugular vein) when placing and taking out the port. So I have 4 locations that have been cut into. I was supposed to get blood work and a CT with contrast all done thru the port this week, but I am rescheduling it for the end of next week. I am way to sore for anyone to be poking anything into that area. So, I will have to postpone my pulmonary appointment till the following week too. I am not too worried about it. It’s not like the pulmonary doctor is full of too much information anyway. Hopefully all heals well and there are no infections. I am very susceptible to infections because of all the prednisone and chemo I am on. Say a little prayer that it all heals well, the last thing I need is an infection.

The kids are doing well back at school. Unfortunately, with school come germs!!!! Yep, that’s right, first week back and Jacob already has a cold. As of yesterday I had to pick up McKenna early from school because she was sick. AH! Hopefully that is it for awhile. They got it out of the way and all will be good! Positive thinking! Thanks for all the prayers, keep them coming!

My port

2011-08-14T10:27:00.001-07:00

Well the first week of school went great! The kids are very happy with their teachers, so far so good. I on the other hand was not so excited they have started back. I can't believe they are in seventh and fifth grade! Where does the time go?Sniff, sniff…… I think this year it is more of an adjustment for me than them. I got my butt kicked this week. The getting up early and just everything that comes with them being back in school. So needless to say I have been going to bed very early. Hopefully we can keep the germs at a minimum. That is the one thing that makes me very nervous with them back in school. What they can bring home to me.

Speaking of me, this past week has been trying on my nerves and patience with people. I get so frustrated with people who can’t do their job correctly. So, where do I start….I will start with telling you the last time my nurse came out to the house to do blood work (through the port) she advised me that the port was flipping over. She was able to turn it enough to access it, but it was definitely flipping. Those of you who don’t know a port is surgically inserted in the chest, when they place it there they stitch it to the muscle wall on the chest so it won’t move. On occasion those stitches can break or tear and the port then can flip. Which mine has done. So, I really need to get this fixed. Unlike most people who use the people who use their port for chemo treatments I not only do that but it is used for all blood work and testing (ct/with contrast). I have no other veins anyone can access. So for me it is a little more important that it gets fixed asap. If something happens to me (car accident, ect.) and they need to start medication quickly, it will not happen. That port is very important. So, needless to say I went in to see the doctor and he was on top of it. (his words) I called the doctor’s office Friday afternoon because I had not heard anything. She informed that it had been called into the hospital and they should be calling me to set up an appointment to get it taken care of. I then asked her what hospital. She says to me she doesn’t know?!?!?!? Are you serious??? So, I gave it about another hour or so and called back and told her she NEEDED to find out what hospital so I could call and this going. I called the hospital and what do you know, they are gone for the weekend and the lady on the phone doesn’t believe they received any order from my doctor because it would be right here and it’s not!!! Oh my Lord!! Do you see my frustration? Not their problem, so what do they care. I get so tired of dealing with people who can’t do their job. Seriously they just don’t get it. What ever happen to people having to answer for the things they didn’t do or didn’t do the right way. If people actually had to answer for their actions these days maybe, just maybe things would be done right. So I start out this week in the same position I started out last week in. Hopefully I can get this fixed this time. I have no patience left so I apologize now to anyone that I go off on next week. I was supposed to have blood work and a CT with contrast done last week. It all had to be postponed. (both needing a port to do it) I really need to get these things done this week because my follow up appointments are the following week. I really don’t want to postpone those. As far as how I feel. I am doing alright. I have definitely noticed the higher dose of the chemo. I am nauseated A LOT more. I handle it, what other choice do I have. I am not sure what my white blood cell count was last time we drew it. I will have to find out next appointment. Hopefully not to low but low enough for my body to do what it needs. It is a very fine line. I think that is all for an update for now. Say a little prayer that it all gets taken care of this week, otherwise someone might need to bail me out of jail J

Back to reality

2011-08-02T16:56:00.000-07:00

It has been awhile since I have been on here. The last two weeks have been a little crazy. Let’s start with the vacation to Big Bear. Amazing and wonderful! The weather was fabulous. 70’s and 80’s during the day and at night in the 40’s. The kids were able to do so much and never once were we told that they were bored. The first day we were there we went to an area that had things they could climb on and slide on in the lake. Very cool, McKenna loved the slide. She was up and down that thing a lot.

They rented a pontoon boat one day and spent the day on it. Tubing was a huge hit. Everyone loved it.

Then there was zip lining. They take you to the top of the mountain (9000 ft) and you have nine zip lines to get down. Jacob wanted no part of it, but of course the little dare devil McKenna was all over it. She was nervous at first but after the first one she was good to go.

I found out very quickly I was going to be limited as to what I could do and for how long. With sunscreen and an umbrella I was getting burned very fast. I guess being so close to the sun. I knew I had to be careful because of all the meds, but it really was an issue. I really couldn’t do much of anything but I stilled enjoyed myself very much. It was really one of the best vacations we have ever had.

Now getting back to reality…….do we have to go there??? This past week since returning home has been one of the worst. We were home about three days just getting back into the swing of things and our refrigerator dies. Really??? I don’t have the money for this!! Urg! Got that replaced after living out of coolers for a day. McKenna thought that was funny, and Jacob just couldn’t understand it. Just go to the store and buy more groceries when we get a new one. Sure Jacob, I have no money worries at all! Kids, they just don’t get it. Although I do remember that age and being like that as well, so I will forgive him. Last but not least we had to put our dog Taz down. That was one of the hardest things we have had to do. It was killing us. Taz was a member of the family. We have had him since he was three. He was twelve, and having a really hard time lately. The last few months he was having a very hard time with his back legs. He was in a lot of pain and having a hard time getting up once he was lying down. He also had a very hard time seeing, his glaucoma was pretty bad. The last few months we had noticed him doing weird things, I guess just getting old. About a week or two before we left on vacation he started pacing and panting at night. Not every night just every once in awhile. Once we got back this was happening very night. It was bad and very sad to watch. He was literally having panic attacks kind of and we would try and talk to him and he acted like he didn’t even know us. He would listen to no commands at all. Those of you, who knew Taz, you know that isn’t him at all. He listens to everything. When he would start pacing and panting it was like he couldn’t even hear you. I had never seen anything like it. It was a little scary. We basically sat on the bed all night and watched him because there was no stopping him and he wouldn’t allow us to sleep. He would go from Jimmy to me to Jacob and then to my dad. Almost like he was scared too and didn’t know what to do with himself. Very, very sad to watch. It was breaking my heart. It was Alzheimer's. Not a lot we could do. We tried giving him anti-anxiety meds and that didn’t touch him at all. We gave him the max dose and he still freaked out all night and then once morning hit he would pass out and we couldn’t move him at all. It was sad to watch and we knew it was time to put him down. It was a very sad day; the kids were very upset but handled it very well. Before we took him we spent some time making paw prints with him and the kids enjoyed that. Plus, they have a little keepsake that we all made together. I can’t believe how different it is around here without him. It is very quiet and very strange. He was always following me everywhere. I couldn’t even go to the restroom without him right there, so it will take awhile to readjust. I know it was for the best but it didn’t make it any easier. We will all miss him terribly.

So that has been the last couple weeks, so I apologize for not writing sooner. It has just been a little crazy. It is now time to get the kids ready to go back to school. L I am so not looking forward to that. Surprisingly they are though, so that is good! I will post again soon! And I am going to try and get some sort of picture player on here so I can post pics from Big Bear. Hopefully I can figure that one out.

Big Bear Lake

2011-07-15T17:20:00.000-07:00

Not going to lie, this past week has been a little rough. This raised dose is kicking my butt. I feel a little green. Nausea has been taken to a whole new level. I feel as though I am pregnant. As time goes on I am hoping my body adjusts to it. Surprisingly I am not missing the hair too much. I must say it is nice not having it come out the way it was and the missing condiment on the dinner table is an added bonus!

I am so ready to get out of this heat! We are outa here for a good week. It would not be possible without my sister Kim and her fabulous sidekick Mary, so thank you !!!!!! Can’t wait to spend the week with your family and just hang out in the cooler weather. I looked up the temps last night and big high of 80 during the day and 40s at night. Thank you Jesus! I may not come back. Honestly I am a little anxious about leaving. I guess I am a little apprehensive about being so far away. Trying not to be, but I just can’t help it. I am sure everything will be fine. Just my mind playing the “what if” game with me. The kids are beside themselves with excitement. They have been bored out of their minds so I don’t think they will be able to sleep tonight. Jacob was looking on the internet for details and activities that will be going on when we get there. He says he is looking forward to the “wine walk.” Ha!! Nice try kid. That’s my kid for sure! LOL McKenna is looking forward to parasailing. We will see if she actually does it or not. She is my dare devil, so I am thinking she will. I just can’t wait to relax and enjoy my family!! My husband especially!! Hopefully minus the blackberry!! I am praying there is no service but somehow I doubt it.

A BIG day

2011-07-07T10:09:00.000-07:00

Yesterday was a BIG and long day for me so I didn’t get a chance to update about the Dr. Appointment. I am going to say it was one of the best (meaning informative) appointments I have had to this point. Probably because he understands better what my body is or isn’t doing. He was able to answer a lot more questions this time without giving us the “ummm, I am not sure” answer. Jimmy walked out and said that he thought it was the best appointment ever. I have come to appreciate when a Dr. gives you more than 5 minutes of their time. He actually acted like I was the only person he had to see all day! It was great. Anyways back to the discussion, he upped the chemo. I am on the maxed dose now. Like I had said before it is working but at this point maintaining. So we needed to take it up a notch. I asked what the game plan was….what is the goal we are trying to reach with this and how long will I be doing chemo. The game plan is basically, go with the punches. What my body decides to do is what the game plan will turn into. Not want I really wanted to hear. For now we are upping the chemo and seeing what happens. Short term goals are to say at this dosage of chemo and slowing wean off the steroids. Once off the steroids, we will see how my body reacts just being on chemo and then go from there. If everything seems to be going well at that point then he will more than likely put me on a less invasive form of chemo for long term. Now if this higher dose for some reason stops working then we still have a few options. Not a lot but a few. Basically adding in other things on top of what I am already doing. Hopefully that doesn’t have to be an option. Anyways, it looks as if I will be on chemo for awhile. In the beginning we were a little optimistic in saying chemo for 6 months. When I questioned the 6 months he chuckled, were looking at, at least a year on this dose, maybe more. It is all a wait and see what happens type thing. He also said that is not unusual in these cases to be on the chemo for the rest of your life. It is a very strong possibility and one that I will not know for awhile. I am good with all of this information, basically because it is just that….information!! It is good to have a “game plan” even though that “game plan” will change considering what my body does or doesn’t do. I will follow up with him in 8 weeks and do blood work every two weeks to keep an eye on my white and red blood cell counts. Speaking of which, the white blood cell count was at a 7!!!!! Whoo Hoo!!! Prayers indeed work!! SO I went from a 2 at the end of April to a 7 at the end of June! That is pretty awesome!! So hopefully it can stay in a descent range!! I also follow up with the pulmonary doctor at the end of August as well.

Yesterday was also very nerve racking for me. I worked myself up in a tizzy. All over this thing we call hair! I know many of you wrote, texted or called to tell me it is just hair. Which I appreciate all of YOU!!!! I will say you were all right! Once we did it, I was fine. It was like a HUGE weight has lifted off by shoulders. It was that anticipation of it. I came to the realization that it needed to be done. It was coming out in handfuls and I was starting to cry every time I got in the shower. It was inevitable, so I told myself, Jimmy and the kids if he upped the dose of the chemo I was going to shave it off. Jimmy had been trying to get me to do it for the last week. I kept putting him off saying I wanted to wait. (Really coming up with excuses) I really think he wanted a matching bald head in the house, if you ask me! LOL I also think he was getting tired of eating it (my hair) with every meal. I don’t think we had a meal in the past week that I didn’t pull my hair out of. And that was with me pulling it back to try and avoid that. I had such anxiety over this and I think it made it worse because McKenna did. She kept telling us that she is having no part in shaving it. She was not even going to watch. It was just not right in her eyes. I was trying to make jokes about it to make it ok with her but she was having no part of it. So I think that was making it harder on me as well. I have to take her feeling into consideration. We ended up watching a couple shows together and then we all went upstairs to shave it off. McKenna did come up and I told her to grab the scissors and she could give me her own hair cut first. Oh good Lord! She totally jumped on that and got to work. She was laughing so hard she had tears running down her face. Which in turn we were all laughing and enjoying ourselves. Needless to say McKenna should be picking a profession other than cosmetology for her future! At least it totally broke the ice for her and she really got into it. Once it was done they all looked at me and said, “wow it is not bad, it looks good!” I think they were all surprised on how it really wasn’t all that bad. Me included! I couldn’t keep McKenna from rubbing my head either. She just kept following me around rubbing my head and telling me how much she likes the way it feels. Crazy girl! She went from so mad that we were doing it, to loving it! LOL I am just glad she is ok with it and ended up enjoying the process of it. It made it much easier to digest. So that is the story from yesterday. All in all it turned out to be not so bad. I would like to say to all of you just how much I appreciate all the love and support. I LOVE our friends and family!!! I can’t express that enough. You all rock!!

Apprehensive

2011-07-02T16:55:00.000-07:00

As, some of you could see I did write a post earlier and then took it down. Sometimes things are better left unsaid. You know the old saying; if you don’t have something nice to say, don’t say anything at all. I know, that has never stopped me before. I think that what I had written would have been taken out of context and that someone else would have taken the fall for MY feelings. Which would not be fair to that person. Although it was not written to or toward anybody directly, I am pretty sure that everyone would have figured out pretty quickly what it was concerning and why. With that being said, this is my blog, my feelings and my opinions, No one else’s. So if a time presents itself in the future that I write in regards to things happening in my life other than my health, everyone knows that these are MY thoughts and opinions and NO ONE else’s. So with that out of the way……

I am feeling a little apprehensive lately. I have been a chemo now for about 4 months. Wow, I can’t believe it has been four months already. Anyway, when I started out four months ago I had all these expectations of what was going to happen to me. How I was going to feel, if I was going to get really sick and when I would lose my hair. Well as time went on, many of those things didn’t happen the way that I thought they would or when they would. For instance my hair, I totally expected that it would go and go quickly. Obviously it did not and I finally got use to the fact that yeah!!!, I am not going to lose it. I know that is a weird way to write it. “Get use to the fact that I am NOT going to lose it.” But the reality is that, that is one of the first things I think I had to make myself ok about. I think for a woman you really have to get use to the fact that you are going to lose your hair. I know it shouldn’t be that important but really let’s be honest; we spend most of our lives concerned with how long, how short, what style or color our hair is. So, yeah when faced with the fact that you are going to lose it well it is a little unnerving. It’s not like you can put it back on once it’s gone if you don’t like the “new” you. Anyways, after a while I wasn’t losing my hair. So I had to get use to the fact that I won’t be losing my hair after all. Great right? Well yes, that is what you would think. Well then all the sudden a couple weeks ago I noticed more and more hair falling out in the shower. Really nowhere else, just mainly when I washed it. So, I started washing it less frequently. I guess the point that I am trying to make is that I believe the time has finally come. This is today's shower.......What I was able to catch anyways....

It is finally falling out. I went from getting prepared to lose it, to thinking I am not going to lose it, to holy shi* it is falling out! I am beginning to think you can’t be ready for this. I am so apprehensive about how people will perceive me and what my husband and kids will think. I know I shouldn’t care less what people think. Jimmy wants me to shave it off now. I say I am waiting to see the Doctor on Wednesday. I want to see if he is going to up the chemo, keep it the same or lower it. I know, I am just putting off the inevitable. I am pretty sure it will be upped. Even if it is kept the same the hair is still coming out. I guess I am just coming up with excuses not to shave it off yet. I must say though it is weird, I have places where it has fallen out and bald and then I places where it has started to grow back. So it is very confusing as to what the heck is happening to my hair! Is it falling out??? Is it growing back??? I was under the impression that it was just suppose to fall out. I do know that I am pretty sure everyone is sick of my hair being everywhere. I baked cookies for the kids the other day and well, let’s just say I don’t think my hair was in the recipe but it definitely got added in! Although it was my hair, it was still pretty gross to bite into a cookie and not be able to actually take a bite because there was so much hair in it, it wouldn’t come apart. I know, gross. The brownies turned out great! Not any hair that we could tell! LOL Ok, so enough about my hair. Or what’s left of it….for now. Anybody want some cookies????

Is summer almost over???

2011-06-24T17:38:00.001-07:00

Oh my goodness, it is HOT!!! I can’t wait till I can afford to be a “snowbird!” Crazy hot!! I Haven’t written in awhile, there really isn’t anything to report on. Don’t see the Dr. till July so I just wait to see what happens next.

Our summer is going good. Although I think the kids are bored out of their mind. Jacob actually said he was ready for school to start. I immediately checked his temperature, this is my kid who I had to drag kicking and screaming to school everyday form preschool through 5th grade. When he hit middle school that all changed, but still I never thought I would ever hear that he is ready for school. I’ll take it though! He is a little ticked off at me at the moment as well. I guess I am a little over protective. He wanted to go to a friends house today and I had to tell him no. I have no idea who this child's parents are. The one time that this child has come over to our house I picked him up and dropped him off back at home. There was never any parents home to meet me either time. Which I find crazy, I would want to know who my child was coming and going with. Apparently most people don’t??? Who would have thought. Anyways, for this I am not nice. I tried to have the conversation that there ARE people in the world that do no good. For all I know this child doesn’t have parents that even live at the home because I have never seen them nor talked to them. Apparently they don’t have the same values as I do because if they had, I would have spoken to them already because I have had there child in my home. Well needless to say, we have hit the age where I am now mean and I do not understand ANYTHING. I have no clue because I have never been his age. I have never wanted to go to a friends house and was told no. HA! If he only knew. I kind of feel like I could talk till I am blue in the face and he is not going to get it. I am telling you, karma……oh karma. It does come back full force. I was no angel, you name it or even think It and I did it….twice! Oh, and by the way, once you have a child say…middle school age… you know longer need to “Google” anything. He knows EVERYTHING! Just FYI, you have a question you can’t get the answer to, give us a call. He apparently has all the time in the world cuz I won’t let him do anything! Ok, enough venting about my poor miserable child that I don’t love anymore. While he is in his air conditioned room upset at me while playing his xbox 360, with his laptop open on facebook, while texting to his hearts content on his droid phone…….hmmmm, yeah, poor kid. He has it bad. LOL McKenna on the other hand, we haven’t hit that stage yet, but I am sure it is coming. For now, she is still my right hand girl. One at a time is fine with me.

Chemo & Menopause (consider yourself warned)

2011-06-15T15:16:00.001-07:00

So, I must say I have been kind of blah lately. I know, me Blah? Who would have thought. I am kidding. Yes, I still have humor, even on the worst of days. It is all I have sometimes; I do a lot of laughing to and at myself out of nowhere sometimes. Thanks to two very kind and loving people (they will know who they are when reading this) I now have a cute little yellow friend that will laugh with me! I love it! It made me laugh just to hear him laugh, just what I needed today! Made my heart smile so thank you!

I have been feeling a little blah again. I think the vasculitis has really flared up. Which sucks, because it has confirmed what I was thinking….. that the chemo is just keeping everything at bay. I think it has definitely helped, but at some point it started to just keep things where they were. Almost like it was maintaining things. We need to kick it in the a** not maintain it. So, I definitely think the chemo will be upped at the next appointment. Unfortunately that next appointment isn’t until July. So hopefully things don’t go to out of control before that. He is out of town so I really can’t even call him on it. Yes, there are other doctors to speak with in case of emergencies but they don’t want to step on the toes of another doctor and really don’t want to change a chemo dose without talking with him first. So it looks like I will have to wait until next appointment. I have figured out that the chemo has thrown me into early menopause!!! WOOT !! WOOT!!!! LOL All that sweating I was talking about last time, well holy crud!!!! It has gotten even worse. I mean this is crazy! I thought I knew what sweating was because of the steroids over the years. I had no idea! I mean really??? Come on, is this a cruel joke of some sort? Not only have we had to deal with this lovely monthly cycle most of our lives, we then get blessed (cursed) with this at the end? Like we haven’t dealt with enough, so here you go……way to go out in the end!! I am thinking whoo hoo, it will be over and I didn’t need surgery to end it but wait before that happens here is a couple years of living hell before you can celebrate. I mean seriously it is already 108 outside. I really don’t need to feel that way inside while sitting in front of my industrial size fan trying to cool off, cuz the AC being turned down to 68 isn’t helping much! Ladies who have gone through it, I feel for you! For the ladies that it is yet to happen to…….OMG! So Sorry, I am hoping I go through this fast and then I am done. According to the doctor, well she is not so sure. She said everyone is so different. I could go through this and when the chemo is done everything could potentially come back. Whoopty freakin doo !!!! Nothing I can do so I am just going with it. Oh, and let me just add something to this. Just when you think it can’t get much better…..We all know I am losing the hair on my head, slowly but surely it is getting thinner and thinner. Which, whatever maybe it will keep me cooler. (as in temperature, ok maybe cooler looking too) LOL No really, the hair on my head is slowly disappearing but I am blessed with hair growth on my face! Yes! You know your jealous….Ok, not so much. Seriousley??? How does this happen? I thought you were supposed to lose all your hair? Only me would this happen too. I guess this is another lovely side effect of menopause. It is not horrible bad, but it is happening which I find very ironic. Can I catch a break here? I know, I know be thankful that it is all I am dealing with. Believe me, I am. I am just venting. It feels good to get it out. Reading it back, it is a little humorous I must say. Maybe a little bit too much information for some people, but hey you asked for it, so you’re getting it. You all wanted to know what was happening and how I am doing so you got it. All of it J Enjoy your day!

Changed Settings

2011-06-07T13:51:00.001-07:00

Just FYI...A lot of people have said thay have tried to leave a comment and weren't able to. I changed the settings so anyone can leave comments and you shouldn't have to have a google account or any other type of account to do so. (I think) LOL Hopefully It will work if not someone let me know please :)

Our Garden

2011-06-07T09:58:00.000-07:00

We have a WATERMELON!!

I know such excitement over a melon! We were excited or at least I was! I had wanted to plant a garden for awhile and kind of put it on the back burner because of everything that was going on health wise. My sweet little hubby had other plans though. He decided he was going to start this garden a couple of months ago and if he had to take care of it he would. We weren’t sure what to plant or how to plant it, so we winged it. It is small. We didn’t want to start too big because we had no idea what we were doing. Really we still don’t know what we’re doing, but it has been fun. For starters we planted strawberries, yellow and green peppers, tomatoes, lettuce and watermelon. What we have learned….way too much for our little garden. That is ok, we are learning. Funny thing is my husband decided to dump the whole packet of seeds in the soil when planting the watermelon. So needless to say it has taken over the garden! It took over the lettuce so unfortunately it never had a chance. Everything is delicious I must say. We definitely need a bigger garden to plant what we would like, now that we kind of have the hang of what we are doing. I would definitely recommend leaving a lot more space per plant than what is recommended on the package. I would say double the space it says. That is one thing we are finding out, everything is starting to grow into each other. The other thing is make sure you write on the calendar what day you planted certain things. For instance the watermelon is usually ready at the 80 day mark. Well that would be great if I knew when that was. I don’t have a clue. It has been fun and totally worth it. Can’t wait to add on to it or I should say, can’t wait till Jimmy adds on to it……

As far as I am concerned, I am doing alright. I have good days and I have bad days. It seems like the good days turn into having a couple bad days after them. I feel good, so therefore I try and do too much. So I pay for it after. I will say I LOVE being able to sleep in now that the kids are out of school. I am guessing I really needed the extra sleep. Saturday morning I slept till almost 10. I haven’t slept that late since before I had kids. I will tell you that the side effects of chemo and prednisone suck!! I have been on prednisone for about ten years now so you would think I would tolerate them a little better than I do. I think in combination with the chemo it kicks my butt. My mood swings are crazy. I get irritated at the stupidest things. I can feel myself getting worked up so you think I would be able to calm myself down or talk myself out of it. Well….no. It doesn’t really work that way. L Also, this “not knowing where I put anything” is enough to drive someone batty!! I cannot afford to buy everything I keep misplacing. I keep holding off thinking it is bound to show up at some point but it never does!! And last but not least, this constant sweating, I feel as though I should have lost 100 lbs by now with all the sweating I do. This is insane!!! OMG!! I can be having a conversation one minute and the next I am literally dripping sweat. I look as if I have jumped in a pool and got out. Not only is this embarrassing it is gross. The doctor told me that chemo can cause menopause or menopause symptoms, so yeah for me! Love it! (not so much) That along with the prednisone that causes night sweats, don’t come to close! LOL And I wonder why I have a wide range of emotions?!?!? My nurse is coming out to the house tomorrow to do blood work so hopefully the white cell count has increased again. I love that I don’t have to leave the house for that and she can draw it through the port!! Extra bonus! It’s the little things that make me happy!

Smile! It makes your heart happy!

Happy Birthday to me!

2011-06-03T12:50:00.000-07:00

I have always said on my birthday, “It is just another day, no big deal.” As much as you want to believe that, I will say it is nice to feel so loved by others. That so many people took time out of their day to wish me a Happy Birthday yesterday. It means a lot. For those wondering, I have turned 29 again. LOL I like to stay in the 20’s. I really don’t buy into Oprah’s belief of, “40 is the new 20!” Whatever!!! If I was a billionaire holy heck, 80 could be the new 20!! Unfortunately we live on a cops salary so 37 is getting up there. Don’t roll your eyes at me, 37 is getting up there to me! Every year on my birthday I am reminded of when Jacob was about 3 or 4 and I was giving him a bath. It was the night before my birthday and he asked, “How old are you going to be tomorrow?” I said, “ugh 30.” Thirty was a tuff one for me to swallow and what he was about to say didn’t make it any better. After I tell him I am turning 30 he looks over at me with his big eyes and says, “Oh my god!!! Your half way to see God!!!” Although it was hilarious, it was not very nice. LOL I will never forget it. Anyways, I had a wonderful day. I got roses from my wonderful husband. I got flowers and a plant from a friend that made my day as well. We did go to dinner at Village Inn. Don’t laugh; the restaurant was completely empty, so perfect because I really don’t want to be around a lot of people. (germs)

I have been feeling pretty decent lately. The nausea has started to get a little worse this week. I thought I was going to lose it in the car today. McKenna went with me to run a few errands and we were driving home and it hit out of now where. I had a bag in the car and told her to get it. She said, “oh god, you’re not going to gross me out are you?” Like I can help it….She then said to me very serious, “just pull over and I will drive. It is not that far from home.” Oh, well ok then. I should have pulled over and told her to jump on over to the driver’s seat and see what she would have done. I never did lose it. I made it home and it passed. I went to see my primary care doctor this week. I needed a lot of my meds refilled and had no refills, so I needed them rewritten. The last 3 years I have been seeing a naturopathic doctor, who is awesome and I love, but with everything that has been going on I have had to put him on the back burner. He has written most all of my scripts that I have ever needed. So going in to a new primary care doctor whom I have seen once before with my 3 page list of meds I needed refilled was funny. Well not so much funny, but I was trying to see the humor in it. Good Lord, have you ever tried to go over 10 years of medical history in 10 minutes? Very funny! It went rather well. I got everything rewritten that I needed. With minimal questions, which is great for me. What is frustrating and I really don’t get is, the extreme medical issues that I have, you would think that just one doctor would keep tabs on everything. The doctor who is doing the chemo for instance told me last appointment that he only wanted to deal with the chemo and the steroids. Which I kinda understand but I have SO MANY doctors involved now, it is overwhelming. Now they tell me I should get an endocrinologist as well. Seriously??? Come on, how can all these people be on the same page? They can’t and they aren’t. For instance, the primary care doctor is supposed to get updates from everyone about what is happening and what I am on. When I saw her this week I ask her what she knew. She informs me, not much. She didn’t even know I started chemo? Don’t you think that is just a little important? I would think so, but apparently not. So I asked her, what exactly do I need to see you for? She says, “Everything besides what is going on with the vasculitis.” Well let’s see……..the vasculitis is the cause of everything. I see a cardiologist for blood pressure issues that are being caused by the vasculitis. I see a vascular doctor for the vascular issues being caused by the vasculitis. I see a pulmonary doctor for asthma and lung issues being caused by the vasculitis. Now you want me to throw in the endocrinologist for the Addison’s disease that we believe was caused by the vasculits and then of course my chemo doctor. Oh, I almost forgot, they are talking about a neurologist as well. (Hey why not, what is one more) Forgive me, but really what do I see you for….oh for the meds I need refilled that you don’t even know the reason I am on them. Don’t get me wrong, she was a very nice doctor. I just really don’t get what I need her for. She herself told me that I am so out of her league….well that is comforting. Should she even be writing me these prescriptions then? Urggggg……sorry for the venting. Just had to express my frustration. It just doesn’t make a whole lot of sense, but then again what does these days?

I am extremely happy that school is out for summer break!!! It has been wonderful to sleep in! We have some plans for a little vacation as well!! Thanks to my wonderful, awesome sister Kim we are going to Big Bear Lake in July! She has rented a cabin for all of us. It couldn’t be more perfect. The kids and everyone else will be able to enjoy all there is to do there without having to worry about me. If I am up to it I can join in and if not, well I can hang out at the cabin. It will be so nice to get away and enjoy my family! Can’t wait!!!!! Enjoy your weekend!!!

Blessings

2011-05-28T20:34:00.000-07:00

May is Vasculitis awareness month. With that being said at least I have been able to get a little more info on things. Although some of its information I could have done without. (it’s not uplifting, to say the least) I am at least learning, or trying to. All of the vasculitides are classified as RARE diseases. Vasculitis is the inflammation of the body’s blood vessels, and Wegener's granulomatosis is one manifestation of the disease.

Some facts on wg:
In one year, 1,500 patients are hospitalized

11% die during hospitalization
31% become totally disabled
20% become partially disabled 5 years from the disease’s onset.

Some statistics of different types of vasculitides:

Wegener’s Granulomatosis: 3/100,000 in the United States (The exact number of patients is not known, but a very rough estimate is two new cases per million Americans per year, or about 500 new cases diagnosed each year.)
Giant cell arteritis: 20/100,000

Hypersensitivity angiitis: 6/100,000
Polyarteritis nodosa: 3/100,000
Takayasu’s arteritis: 1/100,000

So I think what I have learned is that I need to be playing the lottery! For those that are close friends of mine, you all know that the word “rare” in the dictionary is followed by my name. If it is a “rare” side effect you can bet your bottom that I will get it! That little print that you can barely read at the bottom of the side effect pamphlet, well, I read that first because I am the, “less than 1%” who it will effect.

So needless to say I went “there.” Have you ever done that? Gone “there?” To that place where you allow fear and uncertainty to rule your thoughts, rather than to try and focus on the positives. It can be pretty easy to do. I sometimes sit and take inventory of my life the last few months. I always try and see my glass as half full never half empty. Don’t get me wrong that glass has been knocked over countless times. I choose to focus not on how it was knocked over but how I am going to fill it back up. Here’s a list of just a few things that have brought me to tears these last few months.

1.    Hospitalized twice
2.   Started chemo
3.   Unknown about health and what the future holds for it
4.   Financial worries
5.   Household things breaking needing costly repairs
When I look at it in a list, it can begin to seem a little overwhelming, especially the “not knowing what the future holds” part. The challenge can seem too great to battle through sometimes. It is then that I need to refocus on the Lord, and have him carry me through. I am blessed that I have the Lord in my life, A wonderful relationship that I can count on like no other. I also like to look at these challenges in my life as my stairway to heaven. God gave his only son to die on the cross for me!?!?! So I can have eternal life. Can you imagine? I can’t. I can’t comprehend anything like it. So if this is my road to heaven, I’ll gladly take it. He never said that it would be easy but that it would be worth it. The song that plays on here is my new favorite. It sums up how I try to see things. Blessings…..by Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Love, love, love it! The first time I heard it I was in tears by the end of the song. Just one of those songs that really speaks to me.

I had a pulmonary appointment this past week. My white blood cell count is on the rise!!! Great news!!! Hopefully it will continue to go in that direction. We will check it again in 2 weeks to make sure. It is still way too LOW but better than it was. The only thing I am nervous about is Jacob is sick and running a fever. The last time he ran a fever I ended up in the hospital with pneumonia. Thinking positive….thinking positive….. Anyway, when I started this blog I didn’t think I was going to be able to write much, now I can’t stop! LOL I hope everyone has a wonderful holiday weekend! Be blessed!!

Still got my hair :)

2011-05-24T12:03:00.000-07:00

The last couple weeks my hair is finally starting to thin out. This is about the amount that comes out every shower.

I guess it may not seem like much, but that is just at shower time. I am surprised it has lasted as long as it has. I am thinking that the way we do the chemo is the reason. I get approximately the same amount of chemo a cancer patient gets. The difference is a cancer patient goes in usually every two to three weeks for their dose. I on the other hand get a daily dose of chemo that is equal to the amount a cancer patient would get every 2 weeks. So same amount of chemo, just stretched out in daily doses. According to the doctor it is worse to do it this way. With a cancer patient you get that very strong dose and then your body has a while to bounce back from it. With the way I need it; I need those daily doses to continually kill the immune system. In return my white blood cell count never has a chance to really rise back up. Speaking of which, I have an appointment with the pulmonary doctor on Thursday morning so I will be able to find out where the white blood cell count is. Hopefully it is at a better number than the last time. A lot of people have told me there is a shot you can get to raise the white blood cells. I had never heard of this and will be asking my doctor about it. Not sure why we haven’t used it. He must have good reasoning for it. Even when I was hospitalized a few weeks ago with pneumonia and the white blood cell count was at a 2.5, the Oncology department agreed to keep the chemo as is and never did mention this shot. Anyway I will be sure to ask him of this. Back to the hair, I must say that I LOVE being able to go as long as I do with not needing to shave. That is a total bonus that I am enjoying. Whoo Hoo!! Can you tell I am excited? I hate shaving so this side effect is one that I will embrace! I am able to go about two weeks. I am one of those people who would have to shave every other day if not every day. So two weeks is a long time. Sorry some of you may be thinking, way too much information. If I can’t get excited over the little things, then what is there??? The great thing about the hair on my head is that you can’t really tell it is thinning out much. It really has gotten curlier, so I spray some spray gel in it and scrunch it up. It actually looks thicker than it has in a while. Now if I don’t put anything in it and just let it air dry. Well, then it looks as thin as it is. I will be interested to see what it does.

LAST WEEK OF SCHOOL!!! I am so glad the end of the school year is here. Although I must admit it is a little sad that I will now have a seventh grader and a fifth grader. Where does the time go? It seems like just yesterday I was sending them off to kindergarten.

Oh my babies, puts tears in my eyes seeing these pictures from so long ago. Sniff…..Sniff…..

Anyways, I am looking forward to being able to sleep in and just enjoying them being home. We really don’t have any summer plans as of now. To me at this point it doesn’t even matter. I just love it when my kids are at home. So I am going to soak up as much as I can of them! I hope they realize how happy they make my heart! I also hope they realize that they are enough, just the way they are!! I am truly blessed. Not only blessed by them but by all of you as well. ❤

The Reason

2011-05-18T07:10:00.000-07:00

I am one that truly believes everything happens for a reason. There are no accidents in life. I believe there is a reason God has chosen the path that we are on. It is up to us to choose what we do with it. With that being said, I don’t believe for one minute that God wants bad things to happen us. God wants us to be able to seek him and lean on him through these rough times in our lives. Not only the rough times, but continue our relationship with him through the really great times as well. It is natural to call out to him when life is extremely difficult but kind of easy to forget to give thanks to him when things couldn’t be better. I hear so many people try and quote the scripture and tell me that God never gives you more then you can handle, you’ll be fine. The reality is he absolutely does give me more than I/we can handle. Nowhere in the Bible does it say that God will never give you more than you can handle. It does discuss being tempted, and it discusses trials.( 1 Corinthians 10:13 . . ¨But God is faithful, and he will not let YOU be tempted beyond what YOU can bear, but along with the temptation he will also make the way out in order for YOU to be able to endure it.¨ )

If God didn't give you more than you can handle, then you would never have the need to go to Him with your burdens.
"Come to me, all you who are weary and burdened and I will give you rest." (Matthew 11:28)
God allows us to go through trials so that we will come to Him with our problems. God doesn't expect us to go through the trials alone. He wants us to come to Him and have Him carry us through these times.

Sometimes I sit here and try to figure out the reason for all this. (My sickness) I reflect and try and figure out what the Lord wants me to get out of this. I am not sick because he wants me to be. I get that much. I guess I just feel like there is such a REASON for everything and everyone and I am just trying to absorb all that I should from the people and things that are placed in my life. I look at some people and in my head I am thinking to myself….”Ok, what am I suppose to take from this person, what am I suppose to be learning.” I must tell you I believe I learn something each day from someone or something. It is usually from the people you least expect. Now whether I use it and apply it to my life is up to me. What good is it, if I don’t apply it?

I feel like lately I am struggling with some things that I see in myself that I don’t like and have a hard time trying to change. Some of my biggest issues with myself are that I have NO patience what so ever and I can be very judgmental of people’s actions before I really know them. I also have a hard time “loving” everyone. I look at some things in black and white. You steal, well you’re a thief. You don’t tell the truth, well you’re a liar. You did me wrong, well screw you. Not ever wanting to know why they did these things. They just shouldn’t have done them so I am writing them off. Who the hell am I? It is so easy to just be done with people. It isn’t easy to sit and listen to someone who has done wrong in your eyes and really hear what they have to say. Now, every situation is different. If someone just injured my child on purpose, well all bets are off. I will turn into a mad woman. For that I Thank the Lord we have a forgiving God. Thank God he doesn’t just write us off without any forgiveness and patience. He does sit and listen. It is very easy to point out how others “need” to act and what they “should” have done. Not so easy to look at yourself in the mirror and know that you’re not so different from the people who you criticize. It is not much different than these kids at school being bullies. Where do kids these days learn to act like this and where do they get it from? They have learned from US! I am constantly telling my kids, “You never truly understand and know someone until you know who and where they came from.” With that knowledge, you can understand someone so much better. McKenna is forever coming home telling me how critical and mean some of the girls at school are. I am continually telling her, to have patience with them. Kill them with kindness. They may not have anybody at home treating them with love and respect. They may not know how to treat others the right way. The entire time I am talking I am thinking in the back of my head that I can be so hypocritical at times. I really need to start taking my own advice. I tell her these things, then in the next conversation someone cuts me off in the car and I am calling them every name in the book. It is so easy to talk the talk; I really need to start walking the walk. When it comes down to it, we all need and all want someone to love us and accept us for who we are. I am not sure where I was going with all of this. I just really felt the need to write out what was going through my head today. We all have things about ourselves that we want to improve on and I think this one is a big one for me. (PATIENCE) I get very irritated with people very quickly. I am very fast to call someone out for what I think is stupid or stupid behavior. What it comes down to is, it doesn’t matter what I think. They don’t need to answer to me. They could feel the same way about me. What I think is right, is not necessarily what you think is right. It may not be right at all. But that is the great thing about my Lord. I will be forgiven. I know I will struggle with these things forever. Sorry for the sermon today. LOL I tend to start writing one thing and totally get off the subject and on to something else. Oh well, I guess that is what this blog is for, a way for me to release things that are going through my head. Hopefully someone out there takes something useful from it. If not, well I feel better for writing it. LOL Today I am going to thank the Lord for my illnesses. I know that if nothing else has come from these trials in my life that I have grown closer to God because of them. For that I am extremely grateful. Maybe all of this is to just make me realize the things that I do need to improve on in my life, to make me a better person. How cool is that? God is applying that much time and attention to little old me, to bring me closer to him. Love it….. ❤

A little bit of this and that...

2011-05-12T07:48:00.000-07:00

Another week closer to summer break!!! The kids are so excited and I have to admit, I am too!! I hope everyone had an awesome Mother’s Day! I did, I LOVE my family! It is always a little sad around this time of year though. May fifth was my mother’s ninth anniversary of her passing. It always falls so close to Mother’s day. Not really a horrible thing, just reflect a lot on her. Our health issues were so similar, it would be nice some days to be able to ask her questions. With that being said, it is also a reminder that she is not here and I have one of the same diseases she did. (Addison’s Disease) On top of that I have the Vasculitis. It is hard not to think of that sometimes. I think that is why it is so scary for me at times. I have witnessed what at least one of these diseases did to my own Mother. With me having both diseases, it is just a little unnerving at times. The same year we lost my Mother a couple weeks later we lost Jimmy’s Mother. So as you can imagine this is a time of year that we both think of our Mother’s a lot.

I had an appointment this week and everything seems to be going according to plan. (Knock on wood) I feel like the chemo is working, but I also feel like I am teetering back and forth. Like it is just holding everything at bay. We are going to give it about another month and during that time check the white blood cell count. We are hoping it goes up. As long as it is at a descent number when I go back to see him we will probably be raising the chemo dosage. I definitely feel like things are working but I also definitely feel like I still have HUGE inflammation issues going on. Now that I know what all this is, I am learning to recognize all these symptoms I have always had and never knew what or why. The last few mornings I have woken up and I am so swollen. I almost can’t make a fist my hand is so swollen. After being up for awhile it will get better. I also get Iritis in my eyes. (Inflammation, very painful) I can tell that it has been flared up too. So these are a few of the things we look at in determining whether or not things are really improving or not. On a side note, I still have hair!! It is just now really starting to thin out. So we will see what happens. When I cut it short a few weeks ago it really curled up on me. So it actually looks a lot thicker than it really is. When I wash it you can see a lot of scalp. The upside to that is I rarely have to shave! Now that is a bonus that I will take and enjoy! I am finding that I have lost my brain somewhere. If someone comes across it could you send it my way please!! I lose EVERYTHING!! I cannot remember crap! Seriously it is really bad. I write a list of things I need or have to do and I even forget where I put the list! I can’t tell you the things I have misplaced and lost. It has been so frustrating. So I now really know the true meaning of “chemo brain.” I spent 2 hours yesterday cleaning out cabinets in our kitchen area to see if I could find some of the things that are missing. Well, I had no luck. Did this stuff just grow feet and walk off or something? My favorite is when I am in the middle of a conversation and then……..nothing….it is gone…..I can’t even tell you what we were talking about. Urg…Oh well. I will start using that to my advantage somehowJ. Maybe I can “forget” who some people are…..hehe I am totally kidding!! Ok, well maybe.

McKenna gets inducted into The National Elementary Honor Society tonight! Whoo hoo! That’s my girl! She also just informed me she will be singing a solo today at school. She is in Choir and Honor Choir. Go McKenna! She really wants to start taking piano classes too. If anyone knows anyone who does private lessons let me know. She is really interested so hopefully we will be able to find someone for her. She loves her music. I can’t get Jacob interested in anything that does not involve the xbox! He is a good kid so I can’t complain. Well, until next time….❤

Just going to vent a little.....

2011-05-02T08:51:00.000-07:00

Well, like the rest of the world we were all watching last night as they confirmed that Obama…..oh sorry I mean, Osama Bin Laden has been killed. Although I was glad he has been found. It really wasn’t all that comforting. There are so many just like him still out there. I must remind myself of a few scriptures in light of this news…

"Do not rejoice when your enemy falls..." Proverbs 24:17

"I have no pleasure in the death of the wicked, but that the wicked turn from his way and live." Ezekiel 33:11

It is hard not to rejoice when such an evil man has been killed.

My heart goes out to the Buckeye Police Department. My God be with you all in your time of hardship, grief and loss. For me this is what hits closer to home. This is where I find it hard not to rejoice that at least one of the bastards is dead and hopefully the others will have the same fate. I am pretty sure we all struggle with these types of things. Thank God we have a forgiving and loving God. It makes me look at my husband’s shoes in the living room and I am thankful they are there. When really most of the time I am pissed that he left them there and didn’t put them away. It makes you realize, that at any time he might not walk back through that door. The stupid arguments are not worth it. Who really cares where he throws his stuff when he walks through the door. At least he is walking through the door. It puts things in perspective.

I had the pleasure of talking with an old friend this weekend that I haven’t spoken to in years. I must say it was a wonderful conversation. I have been reluctant to talk lately. I think I am just going through a little bit of a funk. You know that depression that kicks in and you really don’t feel like talking with anyone. Well I must say it felt good to talk to someone and they just listen. I talk with some people and I actually wonder….why the heck did you call?????? Do you REALLY want to know how I am doing??? I have really found out who our true friends really are. In a way it is a little disheartening. The people you think for sure will be there, are nowhere to be found. (Including some family) Don’t get me wrong I am so thankful for everything everyone has said or done. I am really not trying to be rude. It’s just, I guess when the chips are down you really find out who will be there for you and who can’t be bothered. It is a sad discovery. Wow, I am not writing very nice today am I? Sometimes I just need to get a few things off my chest. So, I guess that’s what I am doing today. If you don’t like it……well, stop reading….LOL I really hope to get out of this funk soon. I am not doing myself any favors by being like this. I am thinking that anyone who has an illness such as this and to this degree must go through some of the same feelings. I have been trying to find support groups or something similar online for support. I really am unable to find much. All I ever get is how rare it is, so I guess that is why I am finding it hard. I Found 2 different sites but not much is on them. Hopefully I will find something soon. The month of May is Vasculitis awareness month so hopefully some other things will pop up. The UK seems to have a lot of different support meeting for vasculitis. Unfortunately, I am not in the UK. Oh well I am sure I will find something. I know this is going to sound really bad and I mean no disrespect to anyone that this has affected, but sometime I wish I had cancer. At least I and the doctors would know what I am up against. It is scary when no one can tell me what I can expect to happen or what my life has in store for me. No one really knows. So many things can happen at any time. It can literally affect any organ in your body at any time. I could have a stroke; I could go blind, some many things that could happen. It is just a scary realization that I am not sure anyone could understand unless faced with it. The meds that I am on have really messed with my body as well. You start to worry about what the long term effects of the meds will be too. I have gained so much weight from all the steroids. It has been very difficult to deal with that as well. At one point in the hospital I was on 1000mg of steroids. That is crazy! I was overweight to begin with so this is insane. What’s more frustrating is when you know you are eating well and it doesn’t matter. I need to not worry about such things, but I do. It has really been bothering me. I will get there. I will get to where I am dealing with things better. I need to remember that I have many people who support and love me; maybe I need to start crying on their shoulder. LOL…… Seriously though, the people who continually reach out to me, call me and message me…THANK you so much. I need it and I appreciate it. I may not answer the phone lately but I do APPRECIATE the call. I will hopefully pull myself out of this funk soon. Love you all!! ❤

Looking up

2011-04-28T12:11:00.000-07:00

I figured I had better give an update, it has been awhile. I went to pulmonary specialist Tuesday for a follow up, the pneumonia seems to be cleared up. Yeah! I specifically asked if this was vasculitis caused or if I have vasculitis in the lungs. More than likely because the pneumonia cleared up, I caught it because my immune system is crap. Now whether or not I have vasculitis in the lungs, he cannot answer that. The only way to know for sure is to do an open lung biopsy. This is dangerous, and could have the chance of killing me. No, I don’t want this done and I won’t be getting it done. I will have to live with not knowing for sure. I want answers badly, but not that bad. Treatment is the same either way, so I am good with it. Now if the pneumonia is recurrent he will look in to doing some other test, some type of bronchial study that would determine if the pneumonia is a bacteria or not which would help answer if it is vasculitis or not. If you are confused, sorry I am too. I have been trying to find some vasculitis support groups and I must say it is hard to find anything. I found one today online, I haven’t had a chance to really read a lot on it. A lot of what I read is how rare this is. Hopefully I am able to find more information on things. These doctors don’t seem to know a whole lot and just tell me to research. I guess this is going to be a lot of learning as we go. I must say I have been a little depressed lately. Trying to take it all in and understanding it all. I am sick of being sick. It sucks! I totally know it could be so much worse so I try and take it all in stride. There are a lot of days that this is very hard. My next appointment is May ninth. Everything has been improving. Slowly I see some differences, so I know the chemo is working. It just kicks my ass on a daily basis.

I am eagerly awaiting the end of the school year. Can’t wait to have my babies home with me, and well yes, sleeping in is always an added bonus. There is also the added bonus of not so many germs being brought home too. I have to tell you, I am so proud of Miss McKenna, she has made it into The National Honor Society! Whose kid is this anyways?!?!?! Ha! She is doing great and I couldn’t be a more proud mama! Jacob has done amazing this year as well. They really are great kids, couldn’t be more proud of them both. Again, I thank you all for the kind words and love you have given me. ♥

Home from the Hospital

2011-04-19T10:00:00.000-07:00

I made it home from the hospital. Feeling better than when I got there but far from great. Hopefully this will clear up and not give me anymore problems. I left the hospital with a white blood cell count of a 2. So that is not good at all. I have to be much more diligent about wearing my mask. I am not sure if I gave an update from my appointment last week with the pulmonary specialist or not. He informed us that the wheezing and shortness of breath could be asthma related. I have never had any type of asthma at all. I asked about this being vasculitis that is causing the symptoms. He agreed that it could be but it is very hard to say for sure. The treatment wouldn’t change either or. I am taking the chemo to try and keep the vasculitis in control and breathing treatments for the wheezing. So I figured I am not going to get a definite answer as to whether or not this is vasculitis in the lungs. While in the hospital I was able to speak and be seen by their pulmonary specialist. He informed me of the same thing; it is very hard to figure out for sure. More than likely this is what is affecting my lungs. After leaving the hospital I had an appointment with the chemo doctor yesterday who is treating most everything. He wanted to cut the chemo significantly. He said my white blood cell count was way too low. I had to argue the point that IF this is vasculitis in my lungs and no one can determine this for sure, the vasculitis is NOT being controlled and therefore I am very nervous lowering the chemo. I understand I am taking a risk with the blood cell count being so low, but I am scared to death that we are going to lower the chemo and the vasculitis will still be able to go haywire when I don’t even think we have it in control right now. I am kinda at risk either way and not sure what to do. If I lower the chemo I have to risk the disease not being as controlled and If I don’t then I risk getting very sick from the white blood cells being low. He ultimately met me half way, instead of lowering the chemo by 50mg we only lowered it by 25mg. So I have to be extremely careful. Now with all that being said a very high percentage of the time when people have vasculitis in the lungs it is missed diagnosed as pneumonia. Go figure. I am pretty much convinced that this is what it is. It is a scary realization. I spent most of yesterday in tears. I don’t do that very often but some days I just need to. I guess I am starting to think about what my future really has in store for me. I am scared and to look to your doctors to try and get answers and they don’t have any is even scarier. I am just putting my faith in god. I am stressing over my husband as well. He is STRESSED out. I think he is holding everything in. He is afraid to share with me how he feels because I don’t think he wants me to know he is scared as well. He so concerned with how I am doing and feeling. I am just worried about him too. So if you see Jimmy around, give him a big hug, I think he needs it. Thanks! Monday of next week I go back in to do another ct scan of the lungs to see how everything looks. I then go back in to see the pulmonary doctor the day after that. I go back in to see chemo doctor in three weeks. I am sure I have blood work in there as well to keep up with the white blood cell count. I will keep you posted as things happen and change.

I have to share with you something that happened Saturday night at the hospital. The Goodyear police department was having a DUI task force that night. Now typically Jimmy is in charge of the entire thing because it was in their city. Meaning all agencies from the west valley come out to Goodyear for the task force. Well, since I was in the hospital Jimmy could not to this detail so his commander took over and did it for him. At about 8 o’clock we get a phone call to come to the window and look out. Out in the parking lot at the hospital were all the officers at the task force with their police lights on! It was so neat! It really put a smile on our faces, to know that they were showing their support like that. Plus it was neat to see the entire parking lot light up with police lights. Thank you all for doing that, it really meant a lot and was really neat to see. Again I want to thank everyone for their love, support and prayers! Keep them coming! Love you all and God bless! ❤

Pneumonia

2011-04-15T15:39:00.000-07:00

sorry i am writing this from my phone. really bad week. being admitted to hospital with pneumonia. hopefully just for a night but we will see. ill update when i can.

Losing It

2011-04-08T09:30:00.000-07:00

I am losing my mind!! AHHH! I can handle a lot and I am pretty good about just dealing with things but some days I feel like screaming. This is what I am dealing with……

All over! The doctor has told me to stop taking the antibiotic that I was on. He says I could be having an allergic reaction to it. It could take awhile to clear up, so we have to give it time to see if that is what was causing it. Well, sure I can wait a week or so to see. I am not on fire or anything….. I know, I need to be patience to see if that is it, but I tell ya that is easier said than done. I have already lost it a few times. Not only is it extremely uncomfortable but it isn’t the prettiest looking either. I have tried everything to try and minimize the discomfort. Nothing works. I am using this to vent today…sorry. Sometimes it just feels good to complain. So needless to say, I have been better. I just hope to god that it was the antibiotic that caused it; otherwise trying to figure out what is happening is not fun. I look like this and I am on high doses of steroids. I can’t imagine how bad it would be if I wasn’t on any. For those that don’t know, steroids are used as an anti inflammatory. People that come in with severe skin rashes/hives they would put you on steroids to help clear it up. So, for me already being on high doses and still having this reaction is crazy. I will keep you posted on what happens. Please pray for my sanity. LOL ♥

Not much new

2011-04-05T10:45:00.000-07:00

Haven’t been on here in awhile…..According to Ricky I need to give daily updates. I am thinking a lot of people would get sick of me. Nothing has really changed since last update. I did go in and see the doctor last week and show him my skin. (rash) He wanted to leave well enough alone. So we did. Unfortunately it has gotten worse. I am about to come unglued. I can no longer handle it. I called the office this morning and informed him the rash is still there and getting worse. He has to do something for me before I mentally lose it. (I think I may have already) So I am waiting for a phone call back. I think I scared her because she told me before we hung up, “please don’t do anything.” LOL So hopefully it won’t take too long to call me back. I did go last week and have the ct of my lungs done. I see the pulmonologist on April 12^th. According to how I understand it, I don’t think it is great but I am going to wait and see what the Dr. says and then let you know. I really hate waiting. I am not good with my patience at all.

I would like to thank my dear friend Amy for doing a Gold Canyon fund raiser for me and the family. You are an amazing friend and I am not sure where I would be without you!!! So thank you and Love you!!!! I would also like to thank Christina from the PD for taking care of the fund raiser at the city. I appreciate all the efforts you made to make this successful. I would also like to thank everyone who donated money and bought candles. THANK YOU< THANK YOU< THANK YOU!!!! It is already being put to good use. I have a few things that insurance has not covered so I am using these funds to get things I need that are not covered. Just yesterday I had to purchase hemastixs that are not covered. (These are little strips to test for blood in the urine) My doctor wrote me a script for them so I wouldn’t have to go to the lab every week. Well Walgreens can no longer get them. Go figure, so the doctor informed me that I would have to go to the lab once a week. There is no way I am sitting in the lab once a week. Talk about at risk for catching something. He agreed but couldn’t figure out where to get them. Well it is amazing what google can find. Low and behold I found them on the internet and they should be here shortly. Yeah me!! I was more than thrilled. I can’t risk going to the lab once a week. It is amazing what the insurance company believes is “necessary,” and what isn’t. If it was their mother, sister or daughter it would all be necessary. I won’t get into the insurance part of it, just makes me mad. I am sure many of you know this or have experienced it for yourselves. I will try an update more often. Thanks for the love, support and prayers! ❤

Rough week

2011-03-27T13:23:00.000-07:00

I had a pretty rough week. It was to say the least not fun, but I do know it could be much worse. So I am thankful for what it is. Tuesday I started having “flushing,” which lasted about 12 hours. It has occurred every day since and has lasted for about 12 to 15 hours a day. So not fun. Not only is it extremely uncomfortable but I look like a freak to. A lobster, to be exact. On top of this, I woke up Wednesday with a rash that covered my trunk area. It has since spread to the entire body J Yeah me! We are not positive as to what is causing this. We believe it could be the antibiotic I am taking. With that being said I have been on this antibiotic for a month now, so it would be odd that this is starting now. So the doctor would like me to suffer through it and see what happens with it. Hopefully it will just go away. Flushing can be a side effect of chemo, but not so much the rash. I guess we will see what happens with this. On top of these lovely side effects I have just felt pretty crappy this week. A lot more nauseated than I ever have been and so, so wiped out. Did I mention I am wiped out?? LOL…Seriously, I feel like I can’t do anything, which for me this is so frustrating. I am so use to go, go, going. So, physically being stopped in my tracks from doing anything is very, very aggravating to me. My home nurse came over Friday to do blood work. Which I love, I don’t have to go to the stinking lab anymore. Whoo hoo!! Plus the nurse is able to draw it from my port, even better!! Anyway, while she was here she talked to me about a living will. Which I guess everyone needs to have one. She also started talking to me about how I should really try getting out and doing fun things with the family and spending as much time together as possible. I asked her if she was trying to prepare me for my death??? She insisted that she wasn’t. That she didn’t mean it that way. I know she totally meant well, but it was in a way bothering me and still is. I know this diagnoses isn’t good and anything could happen at any time, but when you have someone telling you these things it is a little freaky. I choose to trust in the Lord that whatever happens, happens. It is his will and he is leading the way. I am going to as gracefully as I can follow him. There are definitely times that he will need to carry me and I trust that he will and has done just that. He has blessed me with the bestest husband and friend I could have ever asked for. I can’t express enough how grateful I am to him for his patience. Dealing with my health issues is one thing but dealing with my emotional side is another. Such understanding and love he has shown me. I am so grateful for you Jimmy. I am also extremely grateful for the rest of my family as well. My dad has been a god sent. Without him I am not sure the house would go as smoothly as it does. My sisters (you know who you are) I owe you so much. You have bent over backwards to try and make my life easier. The family dinners we have started once a month is the best! I love laughing with you all. McKenna and I were talking just last night about how we were laughing so hard we were crying and couldn’t stop. She thought that was just hilarious. A day doesn’t go by that you don’t call and check in. I love you and thank you!!! As far as friends go well the list is long. Just know that you all hold a special place in my heart. There are some of you that really have stepped in and forced me to accept help. Never has that been easy for me, but I am starting to accept it. Elaine, Thank you so much for always being there for my kids. I can always count on you to get them from school when needed. That is something that really means more to me than anything. My kids are most important to me and to know that you treat them as if they were your own means the world to me. I will never know how to thank you enough. I know Jacob isn’t the easiest to deal with. He likes to give you trouble but you graciously continue to pick his little butt up, when most days I would leave him behind…LOL

I finally had to suck it up and hire someone to clean the house. My poor dad has been trying to keep up with it. He insisted that we didn’t need to hire someone. That he could do it. I just felt so bad. I have someone coming in once a month; just too really give it a good cleaning. (Thank you, Becky!! You are the best!!)The kids, Jimmy and dad should be able to keep up with it during the rest of the month. The kids have been awesome with how they are helping. They dust the entire house and McKenna vacuums as well. As much as I can complain about them sometimes, I have some pretty awesome kids. They really do a lot around here.

I haven’t gotten the ct of my lungs as of yet. As soon as I do I will then have an appointment with the pulmonary Doctor. I will definitely keep you all posted as to what happens with that. For now that is what I am waiting for. I don’t go back into my doctor for follow up until the 18^th of April. Although

I do have to call tomorrow in regards to this rash and let them know how it is. So, with that being said they may want to see me sooner so we can try and figure this out what it is or what is causing it. I will write at you all later...Thanks for the prayers! ♥

Follow up Appointment

2011-03-21T17:13:00.001-07:00

Went to a follow up appointment today, we are definitely seeing improvement. Yeah! With that being said not enough. He is upping the dose of the cytoxan (chemo). I say any improvement is better than none. I have been experiencing wheezing at times when breathing, so he has ordered a ct scan of the lungs and is sending me to a pulmonary specialist. We are hoping that the vasculitits is not in the lungs. This would obviously not be good. So we need to rule this out. My white blood cell count is good, but the red blood cell count is a little on the low side. Which is normal I guess with chemo. So I will take some extra iron to combat that. As far as side effects go, I am assuming it will get worse now that we are upping it. They have not been horrible bad. Nausea comes and goes. Some days not to bad and others I wish I would just throw up because it might make me feel better. I am extremely tired most days and I get wiped out VERY quickly. My hair is thinning and breaking. Now that we just upped the dose it will probably not last to much longer, so he says. I have said once it starts balding I will just shave it. I think I am going to stick with that. I’ll let you know. That could change J

Spring break with the kids was good. I was glad to be able to sleep in and not have to get up early. With that being said I really didn’t get any good naps in though. Their birthdays were last week as well. Thanks to Monica Holladay for the spring training tickets, both kids were able to go to a game on different days for their birthday. My dad, their papa, took them. They both had a blast! It was a special day for them and a good time with papa as well. So, Thank You Monica!! It was appreciated! On Saturday 2 of my sisters cooked an awesome dinner and brought it over so we could have a little party for the kids’ birthdays. They enjoyed that as well. All in all it was a good week and the kids enjoyed the time off. They are now counting down the days till summer vacation. 9 weeks and counting!!!! To be honest I am looking forward to it to. I just enjoy having them home. Plus there is less germs to contend with!!!

Again, I want to thank everyone for the love and prayers. I APPRECIATE everything. Big Hugs and Thank You ♥

LOVE

2011-03-12T10:53:00.000-07:00

1 Corinthians 13

³ If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

⁴ Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵ It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶ Love does not delight in evil but rejoices with the truth. ⁷ It always protects, always trusts, always hopes, always perseveres. ⁸ Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. ⁹ For we know in part and we prophesy in part, ¹⁰ but when completeness comes, what is in part disappears. ¹¹ When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. ¹² For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

¹³ And now these three remain: faith, hope and love. But the greatest of these is love.

I just wanted to share these verses with you all. This past week you all have given me a whole new meaning to “LOVE.” It is in times such as these that you really start to realize just what is important and why. Each and every one of you are an important piece of my puzzle. I have learned that it is people’s human nature to want to help. A lot of people do care and want to be there for me. I am much better being a “helper,” than receiving the help. That one is a hard one for me to swallow, but I am learning. I have never wanted to feel like I was a burden to anyone. Not one of you has made me feel like that. Everyone has been so extraordinary caring and willing to help at a moment’s notice. It is truly appreciated. There are truly good people in this world! I know there are people who have it much worse than I do so that is where I get uncomfortable with all the attention.

This week has been a pretty good week. I got VERY emotional with Jimmy last night. I guess I am allowed that. I get that way with him and I feel bad, he has been put through ten years of this. I feel like he has got to be so sick of me being sick. It has to get old for him. I know he is stressed out over everything and feeling overwhelmed himself, but he continues to be this pillar of strength for me. Continually assuring me that he is just fine and that everything will be ok. As far as getting emotional last night, ugh….I am not sure I want to share that. I am having some side effects that are not so easy to deal with. So, needless to say I lost it last night. Let’s just say Jimmy is dealing with a lot….I LOVE YOU honey!! We will look back at this and laugh I am sure of that.

I got my hair cut short this week. It was not falling out so much, but It was breaking and driving me nuts! So, I had it cut short. It is starting to grow on me. At first it was a bit of a shocker. I really don’t like my hair short but I have a kick ass hair stylist that did an awesome job so it is not so bad. Thanks Sue!!! Love ya! I am off to take the kids to my sister in laws house today. She is going to take pictures of them for me. I will post them soon. They have not had their pictures taken together in like 5 years! That is so sad. Life just gets away from you. They both are on spring break and they both have birthdays this week. So they are excited. Jacob will be 12 on the 16th and McKenna is turning 10 on the 19^th. They love the fact that their birthdays always fall on spring break. I told them that was excellent planning on my part and my birthday gift to them every year. LOL I hope you all have a wonderful weekend and If I need a little more therapy I will be back on here to write some more. ♥

New To Me

2011-03-09T10:20:00.000-07:00

So I must say that this is a little uncomfortable to me. Writing on this blog that is. I am a talker yes, but not so much sitting here writing on this blog and telling the world my health problems. So forgive me if I'm not that great at it. Oh, and I can't spell worth a darn either. I am overwhelmed and blessed with the outpouring of love and support you all are giving and I want to say, Thank You! My family and I are truly BLESSED to have such wonderful people in our lives. Speaking of family, I would like to write something to my husband....

Jimmy,
You truly are an amazing man. I love you with all my heart and soul. The last few months have been very hard and I know very draining emotionally on us. Not only have you held it together for me, you have given me such a sense of comfort and peace when everything seems to be going wrong. I know that with you by my side I can get through anything. That includes high doses of steroids that give me high doses of attitude.LOL... I thank you for giving me 15 crazy good years of marriage and I can't wait to see what the next 15 bring us. I couldn't ask for a better role model for our son. If he turns out to be half the man you are, I will be more than pleased. As for McKenna, you have set the standards pretty high as to what type of man she will choose. That is when you decide she can start dating. I believe you said when she is 40??? Poor girl....You amaze me daily with your kind heart and patience toward people. We all know I have NO patience what so ever, so to see you treat people the way you do makes me want to become a better person. I just need you to know how much you are appreciated, loved and needed!!! I know you can't stand Bruno Mars, but you truly are amazing just the way you are! I thank the Lord above for choosing you for me; he must like me a whole lot. I love you bunches and thank you for being you!
Mel

Ok, enough of all the mushy talk. I will try not to let it happen often. As for me, I am feeling pretty descent. Tuesday was the 2 week mark for the start of the chemo. I was told by my home nurse that it takes about 3 to 4 weeks to build up in your system. So around the 3rd and 4th week is when I will really start feeling the effects. As of now nausea comes in waves and really doesn't last all that long, so that is good. I am mainly dealing with having no energy, being extremely tired and headaches. I must say the anticipation of whats to come is uneasy to say the least. I guess it would be the fear of the unknown. Like, going to bed each night wondering if tomorrow is the day that I wake up and I have hair on my pillow. Part of me thinks, if it is gonna happen I wish it would just happen already. Is that crazy? The other part of me would like to enjoy my hair as long as I can. Then again there is a chance I won't loose my hair at all. Although, I am looking forward to not having to shave. If I end up loosing the hair on my head and still have to shave I am going to be irritated. LOL Regardless of what the side effects are I know I need to do this. I know it will all be worth it in the end. Listen to me, I am just babbling on and on, aren't I? Talk about contradicting myself, thinking I would have a hard time writing on here. It is kinda therapeutic. Who needs therapy, just start a blog! HA! Thanks for all the support.....❤

My story

2011-03-07T20:27:00.000-07:00

My journey started about 10 years ago, with a lot of unexplained health issues .Approximately 2 years ago I was finally diagnosed with Addison’s disease. I thought maybe some of my issues would fix themselves once we started the appropriate meds. Well that did not happen. Things continually got worse. I kept telling friends, family and even my doctor, “something is wrong and no one has found it.” I just knew in my heart something was really wrong. Finally I was hospitalized for a week at the end of January this year, where I was able to get answers for 10 years worth of questions. It was in a way validation for everything but the reality was a scary one for me, my husband and family. I have been diagnosed with Leuocytoclastic Vasculitis, Which is an auto immune disorder. It is an inflammation of the blood, vessels and veins. My body has basically turned against its own blood supply. The symptoms that this is causing are what have finally made them be able to diagnose this properly. I have areas on my foot that are turning black and dying off. What has happened is that my blood and veins are so inflamed that it is not allowing correct circulation/blood flow. Therefore it is killing off tissue. Unfortunately this can happen anywhere in the body. (Brain, hands, organs, etc.) We need to try and stop this before I start losing body parts or it starts attacking organs. (this could be the cause of the Addison’s Disease) The only way to do so is to try and shut down the immune system. I had a port placed while I was in the hospital so we would have vein access when needed. While in the hospital they started a low dose chemo treatment to try and stop my immune response. Since leaving the hospital things continually got worse, so they have now started me on Cytoxan chemotherapy. Which I guess is one of the worst. As of this letter I am just starting week 3 of treatment. The doctors have told us that what I have and the combination of diseases I have is so rare that they cannot be positive on how to treat this or try and stop it. They assume chemo will be our best bet and fasted way to kill off the immune reaction. And my hair!! The plan for now is to be on chemo for about 6 months. If it is successful I will then be able to get on a less invasive form of chemo for long term. This has been a very trying time for me and my family. I know I have an uphill battle ahead of me and probably a lot more hospital stays in my future, but with the love and support we have had from family and many friends we will be just fine. I thank God everyday for putting such wonderful people in our lives.