It's been a while! Autoimmune diseases and more
Sunday, July 01, 2018
I wrote back to an old Sparkfriend a few minutes ago, and figured that most of what I was filling her in on I should put on my page, thus this blog post.
Well there have been a lot of ups and downs since I was last on regularly, but I finally got some answers about my pain, fatigue and other issues that I've had for years, some as long as I can remember. I am seeing a rheumatologist now for a type of spondylitis (which she thinks I've had since I was a kid) and fibromyalgia, and possibly sjogren's syndrome as well. I found out in October.
At first it was a HUGE relief - that I wasn't crazy, that somebody had answers. My Dr. knew exactly where to touch, she knew where all of my sensitive trigger points were, etc. But then after the relief, came a bit of depression, that I would have to deal with this for the rest of my life. That I might get a lot worse. Part of that was exacerbated by about 3 months of the worst back pain I've ever had. I could hardly walk. Pain at that level with no break for so long, really wears on you physically, mentally and emotionally. I went to physical therapy for 2 months which helped a lot, especially since nothing else was helping.
I've been on a variety of anti-inflammatories since, I'm trying my 3rd one now. I'm trying not to start on biologics like Humira yet. I don't want to start too soon and get to a point where nothing works anymore, but I don't want to start too late, because they can actually prevent some joint damage. I was under a lot of stress for a while too, but that has recently dissipated. (We had an exchange student, I'm so thankful for the experience and he is truly family now, but it was a bad time to be going through all of this and suddenly juggling a teenager)
Now that my stress is reduced, I feel more prepared to start to try to lower my inflammation in other ways and wanting to offset some med side effects. I need to stop being distracted and in survival mode and relax and get in good habits again. I've got to deal with this for the rest of my life, I need to accept it and do what I can. And I want my life to be a long one :)
So, that's where I'm at. I hope to see some of my friends here, please comment so I know you are here, I'd love to catch up. I would love to help support you, and build a community again which as a perk helps me too, helps me get back on here regularly. Hope you all are well!