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I’m sending you a big hug.
This autoimmune stuff is so hard, especially when you’re young. I’ve had Lupus for 30 years, finally diagnosed in my 30’s after Dr. dismissed me as a “ too busy Mom”, a hypochondriac. Now I have GCA/PMR, new autoimmune disease for me that is presenting more serious & intense. Spent 2 weeks at Mayo Hospital in AZ recently where I got excellent care & the answers to what was going on with me.
I just want to offer this advice if you don’t mind.
Find yourself a GOOD Rheumatologist even if you have to fire a few ! Educate yourself as much as possible so you can ask the right questions & keep advocating for yourself.
This Mayo connect site is so helpful. But maybe consider therapy with a counselor that understands chronic illness. The loss of so much of your life, fear & frustration can really mess with you emotionally.
Know you are not alone & keep hope alive. When I was at my worst, bedridden, depressed, so sick I couldn’t be a Mom to my kids, couldn’t go to work so financially, we were in trouble & I felt so helpless & worthless, all I wanted to do was disappear in that black hole. The fear of how much worse is this going to get? Will I die before they figure out what is wrong with me? Was so scary.
But luckily for me that is when I finally found a good Dr. who diagnosed me with Lupus & treatment started.
So now when I have flares or other issues I keep telling myself it won’t always be like this. I can get through this one, too.
Please be kind to yourself, keep hope alive & do what you can to get help from good Doctors.
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@momac59
Just got a call from my daughter in Chicago (I’m in AZ). She is 36 & has had some weird health issues that , of course, are a mystery to many doctors. We are all medical mysteries in my autoimmune family!!
She got some blood work back & a positive ANA. We are waiting for other results & she is trying to find a good Rheumatologist to see what’s up. She lives on the far north side of Chicago & University of Chicago where they are doing these promising clinical trials is on the south side. I used to be a patient there. I hope she can eventually get in but it’s out of network for her.
Sorry for the long story but I’m processing this information; I feel like it’s bad enough to live with Lupus, diabetes for 30 years & now this more serious intense GCA/PMR is bad enough. But my kid having to face all this is even worse for me. Both my sisters have Lupus, one has Sjogrens too. My niece & nephew both have Crohns. It feels so unfair at times that my lovely family has been through so much. Thanksgiving is always interesting; it’s like a medical convention!
But I do realize it always could be worse. There are folks out there so much sicker & don’t have the good medical care I’m getting at Mayo. My daughter hopefully will find that on Chicago and she has lots of guides & support for her autoimmune journey.
She also has the advantage of time; a lot more is known now & through these clinical trials & research better treatment. 30 years ago it took an average of 8-10 years to get a Lupus diagnosis. Biologics weren’t available, support was minimal except for Lupus Foundation & it was a lot scarier.
Once again, thanks for allowing me to process this in words to folks who understand. I feel less dread & more hopeful for my daughter. Hang in there , especially all the younger ones suffering, werzie1946.