Sunday, January 30, 2011

Quick Update

So one of the muscle relaxers I was taking made me have the pass-out spells in Lupe's. Stopped that.

Started new meds. Don't really like the new stuff. The hip is back to "August Pain" as I call it.

Went to see the rheum. She said the catscan showed the same thing as the MRI. Let me break that down.
MRI Results- "submarrow edema please consult with ct scan"
CTScan Results- "Submarrow edema please consult with MRI findings"
Yep, you read that right. So all of my films, impressions, etc are now in the hands of a, get this, "team of radiologists". They are going to caucus about it and get back with me in a few weeks. Hilarious. I'm not being sarcastic, I really think that is funny. At this point, you have to.

As of Jan. 28th, 2011 I have not been able to walk for 6 months. The pain in the hip feels like it's going to break. And I've had every doctor I've seen- over 20 confirm this is real, no psychosematic business happening.

So the radiologists' summit is one of the ways we're hoping to have a diagnosis.
Number 2, I go see a pain mgmt doc. I'm still leary of this and it will be a new guy, blah, blah, blah.
Number 3, I get my genetics testing done this Friday- BUT WAIT DIDN'T YOU ALREADY GET THAT DONE? Yes. I did at Mayo Clinic in MN. However, they didn't test me for Ehler's Danlos Syndrome. I do have a connective tissue disorder the rheum says, but which one. And has it been named, or better yet, discovered?

Something about my body being "deconditioned" has come up and I have to go have more physical therapy. But I need to have a diagnosis before I can do that? Not really, I can just go PT Lite.

That's what's happening here. Along with all the other life stuff thrown in there, which makes this hop-along stuff bearable.

I feel the prayers every day, all day. Thank you for those. It's pretty cool. Not the hitch in my giddy up, but the prayers-feeling.

4 comments:

carolyn said...

The search continues.... what an incredible story of leaning on Jesus and your Christian friends and family. I hurt because you are hurting and everytime I see you on FB or the blog or just think of you I pray for relief. Your sweet Christian self is a witness to all those docs, nurses and techs you see. Give the pain management a shot-- said from a retired RN. Love you Gillie, Carolyn Mercer

The Nichols Fam said...

Thank you so much for these words and prayers Carolyn. They mean the world! Love to you!

Leigh said...

"Deconditioned" what in the world? hmm... praying along with you to receive a clear Dx and help with pain and... for you to be able to walk again! Hang in there Gillian. Thanks for the update. :)

Lesly said...

Oh Gili! You are such an encouragement to so many!!!