Saw my rheumy last week for a follow and left both feeling unheard and confused. He sent a thoughtful and very helpful follow up message to post which I sent to him this week sharing my disappointment and questions. In short, he believes I have both sero-negative RA and we know for sure I have OA (which includes significant degenerative disc disease in my neck).
I've dealt with this for 10 years so you'd think by now I'd be copacetic with it all, but I get truly disappointed with having chronic illnesses. I feel that I am slowly getting worse, I even bought walking sticks because some days I am too tired to get up a step or my back is so bad I need to hold onto something to walk. These events don't happen often, but never happened prior to this year.
Don't get me wrong, I am grateful that I am not worse, grateful that we have insurance, grateful for a good doc, just disappointed that I am the hot mess that I am at times or for just never being well for long.
Thanks for listening.
Chronic illness sucks!!! we all can relate with your situation as many of us are in similar situations. The best we can do is get enough rest, try to pace our days, and take a break when things suck and do something that makes you happy. I look at puppy videos on instagram when my back pain gets unbearable. It still hurts like heck, but the distraction helps a ton and helps get rid of the black cloud hanging over me from being in so much pain and bringing my mood down.
I hope you get a big break from your symptoms and start feeling better :-)
In the meantime, go slow and look for the positive around you as it really does help.
Kris
Kristian, Thanks. I agree and I do try to think positively because despite it all I have a great life, just not the one that I imagined.
Dear SjoGirl,
I know all too well the burden of chronic illness. The drag on my life just increases, but fairly slowly most of the time.
Our forum gives me great relief. "A burden shared is a burden halved."
One thing I know is that medical professionals don't have the time, or the inclination, to share our burdens.
For me, the biggest 'relief' came when I got the diagnosis of Primary Immune Deficiency Disorder, and the explanation that my Disordered Immune System was also mounting the attacks that have damaged my organ/systems so extensively.
SjoGirl, I really pooh poohed the need for objective diagnosis, because for years and years I never had a single test that confirmed my misery. Treat the symptoms was my mantra. And then out of the blue I had a test that diagnosed my Immune Deficiency (a condition I didn't really 'know' existed). And I was blown away.
As I type this I'm waiting for the nurse to come and give me my infusion of IVIG.
Osteoarthritis is diagnosed with simple X-rays.....and mine show the same horrid DDD that you are experiencing, as well as knee and shoulder deterioration. I already have problems walking, and my knees add to the difficulty. I wake up EVERY morning with pain from my neck DDD.
I have surgical orthopedists lined up to carry out surgery, whenever I am ready. But I just cannot contemplate surgery at this point.
The main attack of my Immune System is neurological. With new damage now to my gastrointestinal system.
I wake up every day feeling terrible. In fact, the worst I feel is mornings. But every movement is painful and a big effort. I try not to feel sorry for myself..........but it's nice to have a place to share.
Regards, Elaine
SjoGirl- I am 100% in the same boat. I am 38 now and my life came crashing down suddenly 5 1/2 years ago when I was still 32. I was making phenomenal money, had a career where everyone knew who I was based on a great reputation, had a beautiful girlfriend and we planned on marrying...then I woke up one morning in excruciating pain and could not walk. Things have changed very drastically since then and I try to find more pleasure in family or watching a good movie nowadays versus some grand adventure traveling with friends.
Very much like Elaine, I now wake up every morning in excruciating pain with my back and legs essentially locked up. I take my spit meds (exovac), my prednisone, my long and short acting pain meds, my nerve pain meds and then I lay in bed for an hour until everything kicks in and I am able to move around. I am ecstatic I am not wheelchair bound and can move on my own, albeit very slowly, My day generally gets better after I wake up.
It is not at all where I planned on being, I now try to find comfort and joy in helping the lives of people around me in anyway I can. Kind of the spread happiness gradually idea, or little acts of kindness spur others to do more and greater acts.
I know none of us would have chosen our current positions, but truly happy we have a wonderful board to find each other and converse on. I think they will find a lot better treatments for us in the future and our quality of life will improve dramatically. In them meantime we can all cheer each other on for the little victories and support each other when needed.
I hope you find as much happiness as possible and that the current malaise from dealing with a sh*$%y disease soon passes.
Kris