I just wanted to add my story to the mix. When I was in mid teens I started having intermittent joint pain in my hips and knees and developed a rash across my nose and cheeks. My GP did some blood tests thinking I may have Lupus but everything came back normal. Then in my mid twenties I had a stroke caused by cerebral vasculitis. It took 3 more years to finally get a rheumatologist to diagnose me with SLE. Besides my blood vessels my joints and skin have also been affected. Two years ago I had to have a hip replacement (one less joint to ache right?!), and I have a very low tolerance to the sun. I've been pretty lucky, I've only had long lasting flares a few times. I was feeling well enough that last year I got a new job working full time again for the first I'm in 7 years. Unfortunately my body had different ideas and I'm back to part time. I have had bad luck with rheumatologists so now I have a great GP and pain management specialist working with me to manage my symptoms. I am on a lovely cocktail of med but I am determined to stay off narcos as much as I can. Sure there are more bad days than good days right now but every morning I get up and get my game face on. As the years go by and this disease progresses I realize that I will never be the same person I was again and that's OK, I just have to adjust my mindset as to what it means to be successful. I appreciate any comments!
That’s something I’m working toward, knowing Im not the same person any more and I won’t be. But it’s ok, time changes people any way, right? We just do it for a different reason. Glad to hear you found a good dr. and meds that work. I’m still working on both.
It was my first stroke in my early thirties that led me down the path to diagnosis. I guess I was 34 when it happened. I had a second approximately a month later. Until that point, doctors hadn’t even bothered with testing. They all wanted to label me as “depressed” no matter how many times I told them I wasn’t… Anyway, many health issues, and my own drug cocktail later, I am in your position. What I’m trying to tell you in a not so eloquent way is, I understand. None of us are who we used to be. Therefore, we must all focus on being the best “me” our bodies and minds allow.
Blessings,
Heidi
WOw, that comment resonated with me. I am not the same person that I was when I was younger for so many reasons but lupus has changed me in ways I couldn't have guessed. In some ways, I daresay for the better. In some ways,I mourn the person I once was. Hugs. Beck said:
That's something I'm working toward, knowing Im not the same person any more and I won't be. But it's ok, time changes people any way, right? We just do it for a different reason. Glad to hear you found a good dr. and meds that work. I'm still working on both. :)
