Life with a Flare

Disclaimer: This post focuses on the difficulties I had with my insurance company recently to get treatment. And while it is easy to blame only the insurance companies for denial of coverage the drug companies are also at fault here for charging exuberant price and charging different amounts in different countries. Many of my close friends know how frustrating this summer has been. As you can see from my last post I have been flaring since student teaching in the spring. In the past it was hard to control flares because we didn't know the underlying cause/disease and therefor the appropriate treatment. This is no longer the case. I have a diagnosis (plus) and awesome team of doctors who come up with aggressive treatment plans. Theoretically when one treatment starts working and my doctors change the treatment plan I should be able to start the new treatment and hopefully be on my way to feeling better. However when that treatment cost $10,000 or $20,000 and off label it is not th...

So while it has only been 3 months since I last wrote instead of 6 months, a lot of things have happened with my health. After student teaching I refuse to be on prednisone for a little while. That didn't go so well and there was a month full of ulcers. I couldn't talk, I couldn't eat, I couldn't sleep much. I was not a happy or pleasant human being, which is all the things I hate about being on it. At this point they were running down my throat and I could not swallow. So after a month of this it was time for camp and that meant I needed to be able to talk without wanting to cry and I gave in to the steroids and have been on the highest daily dose yet ever since. Also Behcet's now seems to be the responsible disease for at least this mess. Meanwhile my ability to swallow liquids has also struggled. Most of the time it was pretty solid but more times than I would like I cannot seem to get the coordination down and it seems to go down the wrong pipe and cause ...

A little over a week after Sjogren's was confirmed I had an appointment with my rheumatologist. My head was filled with questions and possibly a little too much online reading (however I have graduated from google and now use my college's online database to read medical textbooks). I had a list of questions on my phone I wanted to ask and did get to most of them. However the ones I missed was due to me already feeling overwhelmed and wanting to focus on specific things, not because the doctor rushed me which is a nice change. The most important part of the appointment was figuring out a treatment plan. My rheumy asked what the most pressing symptom is and obviously it is the autonomic nervous system issues (autonomic neuropathy). He thought the best treatment option was a medication call azathioprine (Imuran), which is an immunosuppressant drug. However before I could start I need a blood test to see if I had the enzyme needed to properly metabolize the medication (10% of the...

Two years ago I was doing my research before my first rheumatology appointment and I discovered most people with autoimmune arthritis are on self injectable medication. 90% of kids with Juvenile Arthritis take a medication call Methotrexate, which can be taken orally but is mostly done by injection. Although I was also pretty positive we were not going to find anything at my rheumy appointment so I didn't think much about it. Once we discovered Uveitis in my eye though I thought my fate was sealed. Just under two years ago I was trying to prepare myself for the idea of sticking a needle in my leg. Within a few months of my then rheumy not doing anything I realized as long as I was under her care, for better or worse, I was not in danger of having to self inject. Under the care of my current rheumy the thought of possible self injections was on a very far back burner in my mind for a while but since my joints have done so well in the recent months it has totally disappeared. So to...

Two blog post in one week, what is this craziness? I thought since my joints are why I started this blog I should give an update. It's funny how this past month I have been sicker than I have ever been. I even spent a week in the hospital and added the possibility of a new diagnosis. I can not tell you the last time I ran but I am pretty sure it was the week I got home from school, like two months ago. I had actually been running about tree times a week for a while (thats something I certainly never thought I would say). Between not getting even half my caloric needs and increasing dizzy spells I am pretty sure running and any form of cardio would only lead to me fainting. I am getting side track but I will circle back around I promise! So where I last left off I believe was off Sulfasalazine to see if that would help my stomach, but it didn't. I was off is for about a month. Shortly after starting it again my joints flared (including my neck to add in a new one). I called ...

Celiac Update I started meting with the dietitian on my campus and she is really great (I actually babysit for her kids now). She had me keep a food journal, and we saw I was not eating enough. I added in snacks, I try my best to get two in a day but some days just go better than on that front. I can't seem to break 125 lb, which is okay if I maintain it but not id I lose anymore weight. I also met with Disability Services on my campus and was able to get my meal plan down graded so I am mostly cooking for myself. I was also able to get disability housing for next year so I am getting an apartment with  full kitchen. Last week I saw my GI. She prescribed Periactin to help my nausea (which is why I have so much trouble getting enough food). I am only taking one pill a day right now but we may up it this week. The reason I started with such a low dose is because it causes severe drowsiness. I was actually falling asleep in class the day after my first dose as I was drinking cof...