I have had a lot of changes since the last blog post. I am sorry it has been such a long time coming on the updates, you can all line up to spank me at a later date. Here is a rundown of the goings on in the loony life of mine.
I got into school officially again at Minnesota State University - Moorhead. School is one thing I lost from being ill, and one thing I strive to finish. I still am in the process of the financial aid appeal process (I lost my financial aid because of low and failing grades), so good thoughts and wishes that comes through okay. I start May 22nd, taking an online class about contemporary moral issues. ANYONE who knows me knows I will love a class like this, arguing about moral points and issues. I am pretty outspoken, and I look forward to annoying people with my loudmouth viewpoints, and possibly being proven wrong and someone actually changing my thinking. (Hey I am open minded enough to change based on new evidence...nothing is black and white) My next class will be in July-August, Personality. That is for my Psychology major, and will be an interesting look into the personality of the human being. Honestly, I just can't wait until I get to the good stuff, abnormal psych. I am good at that stuff. (I can't decide whether to be proud or ashamed of that!)
I have had a recent bout with a few frightening occurrences I will tackle them one by one, and let you know what was said, and how it is now. As many of you know, I have Microscopic Polyangiitis (MPA), which is a rare, auto-immune, ANCA positive, systemic vasculitis, that can lead to fatal organ damage if not treated. Because of this I was taking Methotrexate, and Prednisone. Because of the side effects of these medications, I also had to be on Sulfa/TMP DS (to stop infections), and Folic Acid (to prevent hair loss, mouth sores, and more). This in addition to the drugs for my lungs, and my medications for anxiety and depression.
Being on these medications can take quite the toll on a person's body, and one day I woke up shooting out of bed, because my throat was burning. It felt like someone had poured gasoline and lit it on fire in my throat. I could not breathe, my eyes were watering and I was sick to my stomach. I ran to the bathroom because I felt like I was going to pee myself, and as I sat there I vomited pinkish bubbly vomit. It really had no consistency it was completely pink and bubbly, like bubble bath or the bubbles in beer or soda. Instantly the burning ceased in my throat, and I could breathe again. I was too scared to go to the ER, because I have been treated so terrible by doctors before I was diagnosed. I was labeled a liar, hypochondriac, frequent flyer, drug seeker, doctor shopper, etc. So I waited and called the doctor later when they opened.
My doctor, never one to not be careful immediately got me checked over, and I was put on Omeprazole (for acid reflux...they wanted me on Protonix but the insurance is being douchey and won't cover it until I try this stuff), and, because of nausea making me unable to eat properly when I take the meds (which causes havoc on the tummy), they put me on Promethazine to control the nausea from the meds. I must say one week on those and I was feeling great again, although I was chewed out for not going in, as both the MPA and the MTX can cause fatal gastrointestinal problems. Point taken, next time I vomit something up I will go in.
Fast forward to 3 weeks later, and I am feeling groovy. I even got out to go bowling with some friends, and hang out with my nieces. Then, as soon as the wonderful freedom starts...I start developing disabling pain. FIrst in my wrists, to where holding things was hard for me. Then my knee. Then came the neck pain, and back pain. That pain was so severe that I was sobbing uncontrollably. I suffered like this for a week because of fear of looking like a drug seeker (because I know for a fact NSAIDS are a no go with my illness and meds, and Darvocet and Tramadol don't work for me), so a week into the pain I became desperate. I took NSAIDS and regretted it. I puffed up, my lungs got wheezy, and the peeing all but went to a standstill. In desperation I called my doctor again. She got me in the next day for an emergency appointment, and we decided on a few things. But first the pain. They ordered a DEXA Scan, to measure my bone density, and ordered some labs. They believe the Prednisone is causing bone loss, and possible Osteoporosis, or Osteopenia.
They seen my body is ready to cave in on itself, I am walking like a penguin, and I am hurting badly. Taper the Pred down to 15mg (I have been on it high doses for over a year, so it is amazing to be at 15mg now). She also prescribed me Vicodin for the pain, and Lidoderm Patches to numb the pain nearer the skin. These things are making it tolerable. Of course, now my arches have dropped on my right foot, making me unable to walk properly, so an orthopedic or podiatrist is in order soon. If it is not one thing it is another! Now, at the same appointment, they determined I was again flaring up, and discussed Rituxan Infusions. They actually wanted me to start those, but I am terrified of shots, and I hate hospitals, and I am terrified of an infusion reaction. Methotrexate was working well, but it did not last the whole week, it would wear off too fast in me, so as a compromise, they decided on Imuran instead. It is taken daily instead of weekly, and they said maybe, it will work better. If I do not show improvement I promised I'd do the Rituxan Infusions.
So, there is my update. I took my first doses of Imuran today, and, two doses in now, I am feeling okay. I became very tired and had to nap, but after the nap I was fine. I notice some of the water is going down too. (I went up to 481 lbs, 40 due to water weight alone, the rest from being sick, unable to do anything, and being on prednisone off and on for almost five years, and one year consecutively twice). I am seeing a medical weight loss team to help me get back to my old pre illness weight. So before you judge fat people realise maybe they have an illness, and it is meds, not being a food stuffer, that causes it.
Anyway, there is the update. I will post a full list of all my medications and tests I have had (and diagnosis I have had over the years) soon. Just so people can see how long this has gone on. So again I am sorry for the delay, today is day 1.5 for Imuran, and I honestly feel okay. I hope I can get past this little turd in the road, and come up okay from all of this. I appreciate your support!
<3 Tamz
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