I had to see my GI specialist yesterday - just for my four-monthly review. I've got a pretty close relationship with him because he's been with me through life-threatening illness. He really made me smile yesterday and I wanted to share with you all because it's a reminder of what a wonderful doctor really is.
I'm looking awful at the moment because of pain and exhaustion, but in terms of my weight I'm doing well. I've lost a little bit, but not enough that we have to worry. I spent time in hospital in late '09 on a feeding tube because my weight dropped to just 60lb, and I happened to mention to him that I found a photo we took of me early last year, a few months after I'd come out of hospital. I said that I had taken one look at it and cried because looking back I couldn't believe how bad I'd been, especially as this was after months of enteral nutrition and having put a fair amount of weight on (this
is the photo)
He got a bit emotional himself, and told me that even he hadn't expected me to survive, that he'd never had a patient so critically ill pull through before. Then he told me how proud he was of me and how proud I should be of myself - of my courage, my strength and determination. He told me how inspiring it was that I'd fought my way back from the brink, been through so much (he used an expletive) and could still have a reasonably good outlook about
everything. And I thought - WOW. Firstly that he cares that much and isn't afraid to show it, but how nice to think that others - and especially a doctor - feel that way about
I've had some other -possible- good news too. My PM doctor has been talking with a doctor in the UK about
IVIG for my CRPS (a fairly new treatment idea with respect to CRPS), and feels that with the material he's been given we have a good case for talking to the blood bank here and attempting to get some for me to try.
Other news isn't so good . I had to have a pulmonary angiogram on Tuesday because I was getting a lot of extra chest pain and my GP wanted to rule out PE. No clot, but the CT showed up another six vertebral fractures that weren't apparent on the x-rays :( Getting a heap of severe nerve pain through my back, chest and legs with it too, and I suspect that the injury is encouraging the CRPS to creep further. Sigh
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.
On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.