Skip to main content

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.

Comments

Popular posts from this blog

Feeding Tube Awareness Week Day 1

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think.


Day 1: Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.
I am tube fed because I have gastroparesis and dysautonomia.
Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestines instead…

Left Hip Scope Surgery and Day 1 Post Op

I am home from the hospital from hip surgery number two! I probably wouldn't of stayed over night except my surgery wasn't till 3:30 pm.

The big discussion pre-op was what kind of anesthesia I should get because I got a spinal headache from the spinal block last time. My OS was still adamant that he thought I should avoid the general. I was also really scared about the general because I had been told it meant I would need to be intubated which I did not want.

When I talked to the anesthesiologist he had a very different take on the situation, he said I had a very high risk of getting a spinal headache again because I am above normal height, I am a teenage girl, and I had a spinal headache four months ago. He said if I had a general I may have of miserable night, but that would be compared to three or four miserable days if I got a spinal headache. He also used an IV only version of the anesthesia instead of gas which reduces nausea, plus the fact I do not get nausea from pain…

The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment.

I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal.

I was left with the advise to call me rheumy Monda…