Sjogren's Awareness Day

Today is Sjogren's Syndrome awareness day. Unlike other disease you will not see a lot of facebook profile pictures with a ribbon overlay or products in the grocery story with ribbons on their labels to announce a percentage of proceeds going to research. The majority of people diagnosed with the disease will probably stay silent. I however refuse to be one of them.

Sjogren's is one of the most common autoimmune disease, effecting an estimated 4 million Americans, yet most people have never heard of it and most of the people who have do not truly grasp the effects of the disease. I was one of these people until recently. All I knew was Sjogren's is an autoimmune disease that cause dry eyes and mouths and possible some minor joint pain. I did not know that is could cause enough joint damage to result in surgeries, I did not know if could cause autonomic neuropathy to the point of needing a feeding tube and central line.

When I was diagnosed with Sjogren's 6 weeks ago I was shocked because I did not know it could cause the type of destruction my body has been through. And that was just the problem, no one else seem to realize it either, especially at such a young age, after all Sjogren's is supposed to effect women in their 40s and beyond, my body missed the memo. Since its so rare no one ordered the one test that could tell us exactly what was wrong and why my body had been self destructing. 

Turns out dry eyes and dry mouth are not always the first symptoms of Sjogren's, sometimes they are proceeded by joint pain and/or neurological manifestations. Turns out Sjogren's can and does effect children. After I was diagnosed I discovered it turn's out Sjogren's can be a very serious disease.  

Maybe my story can help others, create awareness.

A New Diagnosis Means a New Treatment Plan

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 population is deficient which can lead to bone marrow failure).

After 10 years of symptoms I was so ready to start actually treating the thing that has been making me so sick that waiting a couple more weeks seemed like agony. Thankfully the blood test came back positive and I was able to start azathioprine almost a week ago. We also upped my prednisone dose. While that was the last thing I wanted to do and have also really been struggling with POTS thanks to the heat and if the root of the problem was Sjogren's prednisone could help and it really has.
If getting better means spending a few nights on the bathroom floor I can handle that

All the medication has been a struggle to adjust to but I am getting there. I have dealt with some side effects from the azathrioprine which have just reminded me of the really bad days of gastroparesis prefeeding tube. I am hoping they will get better as time goes on but I an increasing my dose Friday so that should be interesting. The increased prednisone dose has helped with POTS symptoms and gastroparesis symptoms when the azathrioprine isn't making me too sick to eat much. However I have been a bit wired and irritable from it but both those things seem to be getting a bit better as I adjust. Now I just have to wait a few weeks and hopefully the autonomic neuropathy will start to improve.

Not Fitting in to my Disease Community

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 to live with all the challenges and complications my health has caused I wanted a name as to why. I wanted support groups and walks. I want to participate awareness campaigns and to read about the latest research. If I was going to continue to fight with everything I had how could I fight against an unknown villain?

As I mentioned in my last post I had confronted the fact I might not get that overarching diagnosis. I guess I could have live my entire life that way but there was a part of me that would always yearn for a disease community to relate to a fit in to.
Look! Such a Pretty Awareness Ribbon!

When I was finally diagnosed with Sjogren's I thought I would finally have my community, my support groups, the research, and the walks, all of it. However when going on Facebook groups and forums, even looking through research studies I did not have the sense of belonging I had expected. I had read that Sjogren's generally effects woman in their 40s and 50s, I guess I just did not understand quite how few people my age had it. I knew my ANS manifestations being so severe that I have a feeding tube and central line where not common but I did not realize I would only be able to find one other person with a feeding tube in support groups of thousands of Sjogren's suffers, and no one else seems to have a central line. One person even told me I was too sick for it to be caused by Sjogren's, it must be a misdiagnosis because my level of severity was not possible. Part of me thinks she was upset to think that a disease we share can be so damaging.

Once again I cannot seem to relate to anyone else in the community. I am so much younger and so much more severely affect it seems. It is odd because I have never thought of my self as too young to be sick or even sick really. I am me and my health is just not ideal. Unlike before I feel a little more empowered. I can become an advocate and show people all the ways Sjogren's can affect your life and that it can in fact be a life threatening disease. I think there must be other Sjogren's suffers who are like me and I plan on going out to create a space for them.