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!
P.S.
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.
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| This sock yarn will become fingerless mitts. |
*Abbreviations
GP: General Practitioner
MCTD: mixed connective tissue disease
WIP: Work-in-progress
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
Scleroderma: http://lupeyloops.blogspot.com.au/p/blog-page_6.html
Sjögren's syndrome: http://lupeyloops.blogspot.com.au/p/sj.html
So glad to hear the meds are doing their job. I wish you respite from your tiredness. If have a good attitude about this all - focus on that (and your wips of course! ) ;)
ReplyDeleteThanks, Mary-Anne. I am still tired but able to plod along slowly with basic tasks and get back to crocheting. You know you are tired when you can't even contemplate crochet! I look forward to actually finishing a couple of projects shortly!
DeleteI hope that getting your head around it will not be too exhausting. xx
ReplyDeleteHa ha! You made me laugh, Amy! :-)
DeleteIn weeks like these EVERYTHING feels exhausting! I'm slowly coming good, resting a lot, taking extra naps, and nurturing the soul a bit more.
Keep looking after yourself, Jodie. I'm glad you're slowly coming good and that the lupus meds and infusions are working. xoxo
ReplyDeleteI will (keep looking after myself) and I am. Thanks for your encouragement Rachel. I know what I need to do but having someone else say it, and externally reinforce it, really does help! :-) When your words echo my internal mantras, it's like having an extra player on my team or another soldier in my army against the daily battles of MCTD etc. Your comment here is most appreciated. Grateful hugs xxxx
DeleteI love the term waiting room wip! I will have one tomorrow too as I have my annual mri and my doctor's appointment afterwards. I am sure it will take hours!
ReplyDeleteGlad you are feeling a tad bid better! Wrapping ones head around around sickness is so hard! My dad's cancer is back and I just can't get my head around it...
Take care
Anne
Crochet Between Worlds
I would be lost without a "Waiting-Room-WIP". In fact, I need to organise a new one because I have just finished the mitts today and, just like you, Anne, I have a long medical appointment tomorrow and need something to work on. I will be thinking of you and trying to calculate whether the time zones might coincide in any way - wouldn't that be funny if we were both waiting with our WIPs at precisely the same moment?
DeleteI will also be saying a prayer for you and your dad. I am sorry for you both that the cancer has returned. Wishing you and your family strength and love. Hugs xxx
I am so glad that your lupus meds and the infusion worked well. Tiredness is a hateful thing, I know it so well. My last ten years were filled with it. But now I feel much better, I undergo a mercury detoxication and it works wonderfully. I hope that you are able to cope with your tiredness, as well. Don't put too much pressure on yourself. Take care, Viola
ReplyDeleteI'm sorry to hear that you have had your own battles against tiredness for so long. What does a mercury detox involve? I thought that once mercury is in the system, it is there forever because the body doesn't excrete it. Did you have a build up of mercury in your body? If so, what was the source for you? Was that the only factor causing your tiredness or a combination of things? Sorry for so many questions - I am interested in your experience.
DeleteThat's fantastic that you have found something that worked for you so you can enjoy feeling better again. That is something to celebrate! :-) Thanks for the good news, Viola. xx
I have just discovered that this blog post has been copied and published on someone else's website without my permission and then they have had the gall to add their own copyright to it at the bottom of the page! See for yourself here:
ReplyDeletehttp://www.geneticdisorders.info/article/9885203635/getting-my-head-around-results-/
Fortunately, my words have not been twisted or edited so they still have the same meaning as the original. Also a link has been added back to this page but the writing is very small and no byline etc. has been added to the words to make the author of the words known or obvious.
The inclusion of a link back to this page as the source is not adequate or legal because this page has stolen my intellectual property without my permission. There is a big difference between citing a reference and copying and pasting, word for word, someone else's work (this page even included my photograph!).
Whenever I mention someone else in my blog, I will get their permission. When the post is published I also send a link so people can see what is being written about them. If there are any issues then we can work through that. If someone is cited or mentioned I do my very best to contact them out of courtesy and respect.
Some websites use a function called a 'trackback'. A 'trackback' is a message that gets sent to a website anytime it is cited or linked. I don't really understand the technical intricacies of that or whether blogger will accept one. It is possible that the lack of contact either by online messaging, email or a trackback could indicate that the owner of the website did not want me to detect that they have stolen my work.
Stealing is stealing. There is no grey area. It is a compliment that someone thinks that my words are worth republishing but I am disappointed about the disregard for the copyright of others while adding a copyright notice of their own! I will endeavour to make contact with the web site owner and see what they have to say.