Rockin’ the Free World

28 12 2007

I’ve been thinking… the reason i started this blog was to share my experiences so that another person would never feel as totally lonely and isolated as I did when I was discovering that I have Rheumatoid Arthritis. Now that it is becoming more clear that it is actually lupus I am becoming less frightened. I know that it doesn’t make any sense. I should be more frightened technically. I’m going to get everything confirmed once I see my new doctor on January 10th.

lights1

I’m with part of my family for the holiday. I feel so separated from everything right now. Even though I’m with people I love including Jax… but they all walk much faster than I can walk and feel better than I can feel. My pop talks to me like he’s so frustrated I can’t feel like they do. We are not the type of family that sits around and watches television. It’s a mixed blessing. I’d love to veg out. We’re the annoying ones that go to museums, galleries, openings, concerts, restaurants, and of course – work. (It’s midnight and Jax is on the phone with work right now since they’re having a crisis…such a drag!). Now, we’re going to miss our “night”. I brought goodies for us to enjoy each other. This is major drats! (Not that I feel too good anyhow but I certainly would’ve forced myself out of feeling bad in order to enjoy myself with Jax).

Back to my real point… I guess I’m trying to explain that it’s hard to feel “a part of” when you’re going very slow and hobbling and limping, and wearing the arm compress, and having everyone that loves you worry about you. Plus, I’ve got so much work to accomplish while I’m here – I’m trying to do it when everyone else is asleep which is really a tremendouslyt vicious cycle.

Closing 2007 out – There are many zillions of things I’m grateful for right now. Truly- I’m not being snotty about that. One in particular is that I’m down to 2.5 mg of prednisone. I’ve only dreamed this day would come. It’s been one week now. I was on 5mg for one week before that. My cheeks are already going down! I can start to see my old self. It’s freaky! I miss the real me so much.

This is a good New Year’s Gift! No more prednisone by next week. (I’ll pretend that the swelling is also gone). Have a great one yourself and tell me about you (the reader). – Love, Sasha.

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4 responses

17 01 2008
typeawithra

Great to see your site. What a journey/ I’ve heard many good things about Enbrel and not much bad. Have you thought about taking that step?

17 01 2008
WendyUsuallyWanders

The avatar is Zeke, my service dog 😉 You can see the whole pic on my web site. If you scroll down to picture links, there are two pages of Zeke pics.

http://peaceandcarrots.homestead.com/

Here’s hoping we both have lots of pain free days in our future! 🙂

14 01 2008
typeawithra

First off Wendy – I love the dog picture you have as your avatar! I love dogs. Second – Your story is heartbreaking..sorry you’ve been through so much. I laughed hard at your prednisone story. I can relate to you. I’m keeping my fingers crossed that my new doc has better bedside manners. (But I’m not counting on it). Take care! Thanks! – Sashsa

9 01 2008
WendyUsuallyWanders

I was diagnosed with RA at 18 years old, then lupus at about 30. My docs changed that to mixed connective tissue disease some time in the next 10 years. I found out I had myasthenia gravis in 2000. Autoimmune diseases are tricky to diagnose and they seem to multiply.

Congrats on getting off the pred! I’ve been off and on it for about 30 years. I took 100 mgs a day for almost a year once. I didn’t need to walk anymore…I was so round I could roll ;-p

Pred saves our butts while adding to them. Can’t live with it, can’t live without it!

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