The Joys of Having Autoimmune Disease

| January 6, 2015

Although I’ve written a lot over the last few years about some issues I’ve had with my Lupus, I should have been happier that things weren’t worse.  Recently I started with some pain in my right and especially my fingers.  I wasn’t sure what was actually happening ad kid of blew it off until it got really bad.  I started to see a new Primary care physician who happens to be a good friend of mine.  She suspected it was vasculitis and got me in to see my Rheumatologist Dr. Susan Manzi at the Lupus Center of Excellence.

She is running more tests and suspects it vasculitis as well.  I had to get a shot of steroids, the highest dose I’ve ever received and I’m now starting another prednisone taper.  As I’ve mentioned in the past, I hate being on the prednisone, but at this point, I don’t have a choice.  My pinky finger is purple with no circulation going to it.  I’m hoping the steroids and other medications I’m now on will clear this up quickly.

It’s crazy, as soon as my training starts to go well, I seem to flare up.  Other than when I was first diagnosed with Lupus, this is the worst flare up I’ve had.  It seems I just keep adding issues to my list of ailments.  I’m frustrated and angry.  I eat well, workout and take care of myself but for some reason, I’m so sick.  How is that fair?  I’m sure there are a lot of you out there who feel the same way.  You do everything right, but somehow you can’t stay healthy.  It’s just the hand we’re dealt with.

I’m sure there are some other things I can do to stay healthy.  I am revisiting my diet to see if I can still make changes that will keep me healthy.  That’s all I know to change at this point.  My goal is to get off the medicine if I can.  I have no idea if I will be able to do this, but that’s my goal.  If anyone has any tips on what they’ve done to get off medication for an autoimmune, I would love to hear it.

Thanks for reading everyone.  I hope next week to have an update on how I’m doing on the prednisone and if my finger is any better.   I will also update you on my training.

Just remember, as I’m still thinking about the 101 reasons to deal with your autoimmune disease, expect the unexpected.  You never know when you’ll get hit with something new.  It’s easy to feel sorry for yourself through all of this, but it’s important to keep going and not let the bad times change your life too much.  Keep moving and stay strong.  It makes all the difference.

Joella

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Category: Autoimmune, Blog, Joella's Corner

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