I think the chance that I just stumbled upon this page may very well save my life.
At a time where I could not be any more desperate for help, I have found hope, and I feel like I want to cry.
I just turned 20 last month and have been struggling with my health for almost 8 years now. I am so exhausted from the suffering and emotional impact of feeling so entirely alone and helpless I can barely pull myself out of bed to do the simplest things anymore. I have been trying to stay in school partly because I am determined and party because I need to stay in school full time to keep my health insurance, but with one thing after the next coming up, the unexpected hospital visits, and on top of it the chronic consistant pain, I am on the verge of giving up on my life all together and can't help but feel that I am being completely robbed of all opportunity. I have not had the support from my doctors, family, friends, or professors that I need, and despite my greatest efforts am coming to the point where I may just end up being a failure all around. Instead of acknowledging that the symptoms are real and very well related to the autoimmune illness I am treated like I am either making it up or just have to live with it because thats the way it is and they dont have a solution for me. They do not even have a proper diagnosis, just a skin biopsy positive for collagen vascular disease, positive ANA, anti-ro, anti-la, elevated sed-rate and rheumatoid factor, a rheumatoid arthritis diagnosis that was taken back, family history of lupus MS and thyroid disorder, and a whole lot of symptom attribution to fibromayalsia (which from my basic understanding is their complex way of saying they dont have a fricken clue!). Well guess what, I have not been make\ing this stuff up, NOBODY WOULD EVER CHOOSE TO FEEL THIS WAY, I am not being weak and I need help, soon. I am very smart and I do my own research and found something called CIDP which can manifest in people who have sjogrens, which the doctors speculate is going on, and furthermore, this CIDP can also lead to something that causes muscle weakness, burning, and acute pain in the left shoulder, which has been my chief complaint lately. But, will any doctor ever listen to me? Will any doctor ever consider that I am suffering much more than dry eye? I am overwhelmed with joy thinking of the possibility that there is a doctor out there who gets it and how many people who are going through similar things. I do not feel so alone and I have new hope for my future knowing that all the effort into advocating for myself may finally pay off. I am sorry I sound so crazy, I have clearly been loosing my mind.