The Gimp Chronicles: Shade-Stealing Crips: HATE. HEAT

Tuesday, July 05, 2011

HATE. HEAT

Here in crAZy, the so-called "monsoons" are arriving, and so it's not 118 anymore, but 105 with ridiculous humidity. My legs are tweaking a bit, as the heat affects my MS pretty badly. Hopefully, being I'm in the b-cell monitoring phase of the clinical trial, I will make it thru the end of summer without a collapse. That's right, not a relapse, but a COLlapse.

My last appt was very good though-- dropped from a 2 to a 0 on the EDSS. I love how that makes my neuro both happy and proud-- of me, him, and the drug. I have to say, so far it's been rocking. I'm looking forward to feeling decent, even if I'm still fatigued.

Hope all are doing well and had a good fourth (Americans). Now back to your regularly scheduled program of gimptasticness!

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Your humble gimptastic blogger:

Dx with RRMS on January 13, 2009-- interestingly, also one of my brothers' birthday. I'm in (*was in) a clinical trial for Ocrelizumab at present, and have had the first two infusions (August 2009). Before that, I spent 6 months poking myself with an Avonex needle and learning to cope with side effects the first two months. I probably have had MS for about four years, and was diagnosed at first with RA in 2007 , summer. Luckily, in Nov 2008 I hit Vertigo City after asking for a pain management referral, got a neurologist who dared to give me valium and meclizine for vertigo and got me a MRI. I so remember he called me soon after the MRIs were taken, asked me to come in, and explained that the radiologist reading the MRI had panicked and called him, saying 'You have to get her back in!'. He was pretty sanguine, but also told me, "If you were my daughter, I would tell you to take this [MRI] disk and go to the emergency room at Barrow or go to San Diego." I looked at him and basically asked, "Really?" His contention, and I believe him, was that my little podunkia county could not get the team he thought it would take together in less than several months' time, whereas Barrow had everything in one place. He let me know he didn't think it was cancer, that maybe it could be MS, but oh, "you also have a disk protruding right... there." Joy.

Long story short, I went the next day with bear and proceeded to have every bit as exciting and frustrating a diagnosis process as the TV show "House" presents. I believe I had seven doctors in several specialties trying to dx me-- a neuroimmunologist, a neuroncologist, an infectious disease guy, a neurosurgeon, a rheumatologist, and at least two other neuros. Two wanted to biopsy my brain (AHHHH!!), and luckily my hero-MS-doc held them off while I was tested for every conceivable disease. I swear. In the end, after eight days I had one diskectomy in my neck, had given lots of blood, but went home for Xmas. I had to see them four weeks later, and two things happened-- my neurosurgeon said the neck was looking good, and my hero-MS-doc gave me my official diagnosis. Sis, hubby, and myself were there. Thus began the real drama in life.

In regular life I profess English (figure it out), have a large family of four-legged ones, and fiddle on computers. Texas is my home, though I presently am in Arizona exile and really am not fond of the place*. I am grateful in the extreme for Barrow and the docs and staff there, and I don't even mind the 350 mile round trip drive up there. I will not reveal names, but lemme say that my MS doc and his trial coordinator rock the box!

And there you have me.
*Note: this loathing of Arizona is just getting worse (May 2012). **Better note-- I don't live in AZ anymore!