He confirmed my worst fears. There is no way to link all of my illnesses together as far as is known at this date by ALL doctors I have seen so far haha. I have a lot of problems and just have to learn a LOT of coping mechanisms.
So much for attempting to put it all back together!
(...and Bipolar Disorder, Gastroparesis, ME/CFS, and Asthma amidst the many...)
Blargh.
Coping school city...here I come!!
Anyone want to tell me any of their favorite coping skills??
xoxo,
Annie
13 comments:
music, music, music, and art. And some not so good things. Oh, and good friends... even if they only exist inside the inter-webs.
But what if there was a connection and it's just that the endocrine doctor doesn't know any better?
I had been reading somewhere (now I wish I had kept the reference) that low stomach acid can cause the gastroparesis and that low stomach acid can occur in CFS patients. Has anyone tested you for low stomach acid? Since CFS folk tend to have all sorts of stomach problems the docs tend to put us on acid blockers which can potentially lead to low stomach acid. Just a thought. I'm not a doc either; I just read a lot.
You are doing so well all you can do is keep trying various docs as you feel the need. You are coping admirably. One positive side for me with me/cfs is because I can't exercise I no longer suffer from exercise induced urticaria (basically itchy hive like feeling on well umm jiggly bits) . Silver lining I will find you! Keep up the great blogging :)
Find the place the calms you. A place where nothing gets to you and doctors are a world away. Keep that place close to you and escape there when things get tough.
Hugs!
I'm with @Kati! It's not you, it's the doctors!!! Keep on keepin on darlin. Continue sharing your story, and you'll keep hearing from others with similarities. I can promise you that. Unfortunately we have to double as our own medical detectives, but the picture is starting to unfold for us Lyme/mecfs/POTS/Fibro catch all's! We will get there! Together! Xoxo
I agree with what everyone is saying -- that that you need to keep on investigating and be your own detective. But at the same time, I would also work on accepting what you have each day. I use the little paragraph from Ajahn Chah in my book all the time to help me calm down and accept how I feel each day:
"If you let go a little, you'll know a little peace.
If you let go a lot, you'll know a lot of peace." (etc.)
I like it because it's calming and also makes me feel good even if I can only take a baby step -- just a small step toward accepting where my body is each day is so helpful.
I also love Ajahn Jumnians approach to each day which basically comes down to: do what you can and let that be okay!
Hugs to you.
It is difficult to deal with people who don't understand. Best to keep up with your bloggin' and hope someday soon doctors can link it all together. All it takes is one doctor to make a difference. I cope with Twitter and word search plus sudoku puzzles. And reality tv. Sending best wishes and always hope.
I like your "warning"!!!
Heheheh ...
{{{hugs}}} hope you will feel better soon !!
I cope by spending as much time as I can handle knitting and spending time with the hubby.... Can I borrow that pic for my next blog post it's priceless xoxo
take care
How do I cope? Lately, not too well quite honestly.... I read my favourite books over and over....take a hot bath, talk to a friend with M.E. who "gets it".
Coping methods, coping methods... Music. Writing (whether it's a story or a blog post). Videos (I am now a YouTube junkie, vlogging all of my worries). Creative, hands-on things (card making, painting, putting outfits together). Getting dressed, doing my hair and makeup -- EVERY day, no matter how I feel, because it really improves my mood and outlook. Talking (to anyone, even if it's the cat). Journal (which I guess goes in the "writing" category, but hey.) Um... Video games! I love my DS, the Wii, and Mike's Xbox. (Peggle on the Xbox is SO addictive!) Reading (I am such a bookworm and comic junkie). Comfort food. Exercise.
Basically, I use everything I enjoy as a coping method! It helps a lot.
*hugs*
An article you might be interested in:
http://www.nxtbook.com/nxtbooks/fma/fibromyalgiaaware_23/#/62
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