These autoimmune diseases are difficult to fathom for my doctors too.
Last week, I was 'trying to get my head around' advice from my family doctor (GP*) about coming to terms with my illness. I thought I had indeed come to terms with it. I know I have certainly told it in no uncertain terms where to go! I wish it would listen. If it needs terms I know a few strong ones I could use!
(Sigh!) Unfortunately, words are not enough so it was off to visit the rheumatology specialist! I am lucky to have a rheumatologist who takes a special interest in connective tissue diseases like scleroderma, lupus and Sjögren's syndrome by continually researching and staying up-to-date with latest findings.
This visit was to review previous test results and make any necessary adjustments to the management plan. It was also the first visit to any doctor since the post-infusion blood tests (also mentioned last week). I was keen to find out my iron levels after suffering the exhaustion of recent stressful events.
Good news! The lupus tests came back negative which means the medication is doing its job well. The other good news is that my iron levels are also excellent–hooray!–the infusion continues to provide benefits; such a relief.
So why am I still suffering tiredness etc.? Some of the other test results were not the best but my doctors and I are working to fix them.
My rheumatologist is so lovely (a knitter too!), taking time to carefully explain the technicalities of biology and binding antibodies and other factors, patiently allowing me time to process the information. It's all very interesting and fascinating but I wish it wasn't happening to me!
When I thanked her for being patient 'while I got my head around it', she replied, "I still haven't got my head around it!" meaning she's an expert and there is so much still to learn about autoimmune and connective tissue disorders. They are complex and, for example in my case, there are so many things going on, it is often hard to really know how much is caused by or connected to the MCTD* and how much is separate and coincidental to it.
So if my specialist can't always 'get her head around it'
then I think I can be excused for
not always getting my head around it!
My "Waiting-room-WIP" (in case you were wondering) was a pair of
fingerless mitts. This project had been prepared especially for hospital visits back in December and is my current easy take-along project.
|This sock yarn |
GP: General Practitioner
MCTD: mixed connective tissue disease
Related Posts on Lupey Loops
"Getting My Head Around It", 13 August 2015: http://lupeyloops.blogspot.com.au/2015/08/getting-my-head-around-it.html
"Hooks, Needles & Nurses", 23 July 2015: http://lupeyloops.blogspot.com.au/2015/07/hooks-needles-nurses.html
"Home from Hospital", 19 December 2014: http://lupeyloops.blogspot.com.au/2014/12/home-from-hospital.html
Lupus (SLE): http://lupeyloops.blogspot.com.au/p/lupus-information-resources.html
Resources on Lupey Loops
Mixed connective tissue disease (MCTD): http://lupeyloops.blogspot.com.au/p/blog-page.html
Sjögren's syndrome: http://lupeyloops.blogspot.com.au/p/sj.html