Life with a Flare

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...

About a year ago I was at a rheumatologist appointment and we were discussing a new symptom, I don't even remember which one it was, my rheumatologist said Lupus could cause it but for what ever other reason I did not have Lupus. She said "Usually not having Lupus is a good thing, but at this point I am sure you just want a name." In that moment I finally felt like someone finally hit the nail on the head. I never wanted to have a lifelong possibly life threatening autoimmune disease. Yet that was not a choice I had. As my symptoms progress and have had more and more of an impact on my life and caused me to grow up in a way that has made it hard to relate to people my own age sometime I earned for a group where I fit in. As the picture of what I had planned for my future changed I felt a need to talk to someone going through the same. Every time someone asks about my feeding tube, central line, and any other parts of my health I just wanted a simple answer. If I had t...

When I started this blog back in high school I was a teenager with chronic pain that I wanted a diagnosis for. I want someone to know what was happening to my body so we could fix it. I did not realize the journey I had in front of me and did not understand that not everything could be fixed. I spent a lot of time going from one doctor to the next though and it started to consume my life. At some point it clicked in my head I was not actually helping myself by being so focused on answers, especially as more issues developed. I finally shift my focus to making the most out of life while living with my symptoms, I started to look at treatments from a quality of life perspective with the realization that my quality of life was more important than pin pointing exactly what was causing my body to fail so spectacularly. For a few years that has been my focus. I have actually had a few doctors comment on how impressed they are by the fact I am not super focused on answers, although I have a...

I just realized that 3 months have pasted since I last posted on here. They have been a crazy 3 months at that. In my last post I had mentioned uncertainties and hanging on by a thread as I was not tolerating my feeds. I ended up spending a good portion of January inpatient due to ever worsening GI motility. I had some pretty extensive testing that did not give us any answers, which was frustrating. I was finally discharged not tolerating any better but forcing myself to push on with feeds because I wanted to get out of the hospital. I also had to increase my IV fluid to 1-2 liters a day. I now run fluids and/or feeds 20 hours a day, but thankfully I am back up to a healthy weight. I was at such a slow rate at one point in the hospital they used a med pump instead of a feeding one. A few theories were brought up by a GI motility specialist I am now seeing in addition to my normal GI, one being there is an autoimmune issue and the others are all genetic issues which can be contrib...

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...

Yesterday the Rheumatologist called my mom. My blood-work showed no markers for RA, but it did have signs of Lyme Disease. The problem is Lyme doesn't fit with most of my symptoms. So the current theory is I have Lyme and something else. I feel like I am back in the middle of a house episode, maybe I changed the name of this blog prematurely. Looks like I am going to be sent for more blood test to further investigate Lyme, and who knows what else. Of course I can not get these done until after I get a script for them at my Rheumy appointment on Thursday, and since I need to have a blood test to check my liver function since I will be reaching the two week mark on the prescription anti-inflammatories before the appointment, it looks as if I get to have my blood taken twice this week. How did I get so lucky. I feel like the test results have created more questions then they answered...frustrating. I would really like to curl up in a ball under my covers and hi...

What real is driving my crazy right now is this limbo I am in. While I almost defiantly have RA or some form of auto-immune arthritis it has been officially diagnosed yet, and is still probably a week away from being diagnosed. As someone who has (or had pre auto-immune disease) the next six years of her life carefully planned out, and a rough outline for the rest of it I am having the most issues with the uncertainty. I will probably be looking at medical treatments on a daily basis for the rest of my life, I have no idea what type or haw it will affect my life. Re-planning my life seems like giving up, but if I act like nothing is going to have to change is that denial? I feel like I am walking a fine line here, and a dotted one at that. On one hand I feel like it is silly to freak out about something that is not even official yet on the other hand if I ignore it that would be like I am in denial. Neither option is currently helping me,...

I think I finally have the emotional strength to write a longer post today. The past few days have been an emotional roller-coaster. Before I went to the Rheumy I had googled what to expect from the appointment and been led to lots of stuff on RA, so I knew a bit about it and was sure I did not have it. I blew the pain in my shoulder off as sleeping on it wrong, and I had probably just injured my fingers and not realized it. Going into the eye doctor appointment on Friday I was not worried, because I was sure I was fine, and even most people with auto-immune arthritis do not even have eye inflammation. There was really no reason to worry myself. As soon as the doctor saw me he asked if I had JRA, I said it was a possibility, and the exam was just a precaution. Sitting there my bubble was burst, inflammation was found in my left eye, I had some form of auto-immune arthritis. By the time I got home from school Friday the eye doctor had already faxed my Rheumy his...

You may have noticed I changed the blogs name from "House OS" to "Living Life with a Flare." It seems as if the mystery has been solved. I have all but officially been diagnosed with Juvenile Rheumatoid Arthritis. Instead of the game being to figure out what is wrong it will now be to figure out how to control this disease. From here on out is going to be a long hard journey, but I can do. I have no appointments this week but the following week I have OS then Rheumy, and the week after that I see an eye doctor who specializes in auto-Immunol diseases.

Today was my eye doctor appointment. The eye doctor found inflammation in my left eye, something that is a sign of auto-immune arthritis. As the doctor put it, it is another piece in the puzzle of the diagnosis. Since I haven't gotten my blood test results yet, I do not have all the pieces. Yet as I look at the puzzle I realize there are enough pieces to know what the picture will look like. I don't like what I see. I really do not have the emotional energy to write a lot today so I will write about what is next later.