Originally Posted by Needananswer
If one more person tells me that if only I'd do more yoga or mediation or think more positively... Or juice, fast, eliminate entire food groups, add in entire food groups, or spin around 10 times in a blue polka dot dress.....
Sometimes I want to jump out of my half closed eyes and rant + rave slurred speech and all. If I only had the energy to get into downward dog. Honestly, most of my friends have a hard time accepting that their high achieving, athletic friend suddenly has a hard time walking around the block or opening her eyes. Those that "get it" have taken the time to research MG and for them I'm grateful.
Though I am new to MG, I am not new to chronic illness. I explain that it is better if they can simply offer support rather than suggestions.
I sounded very much like you about 5 years ago. I was diagnosed with MG about 10-12 years ago.. I tried a lot of things and nothing seemed to help. The adjective thin was never used to describe me, but after coming down with MG which caused a reduction in activities I really got heavier. It was a vicious cycle. Now I did try dieting with Atkins and lost some weight, I also tried some supplements also and again overll I was a bit better, but by and large it was negligible. Then after a while, I gave up dieting and gained my weight and I was worse... Then about 2 years ago I had a bad accident. I was cleaning my gutters and the ladder I was on slipped on the deck and it slid away from house. It was kind of like those bugs bunny cartoons where the ladder fell away and then I started to fall right into the ladder. I broke my face (lower jaw, upper jaw, pallette, cheek, eye socket, 5" fracture of skull, destroyed a sinus cavity, had blood leaking into my skull and spinal fluid leaking out.. Then I fell off the ladder onto the deck and did a dbl compound fracture of my right arm.. I was in ICU for a week and in a regular hostpital room for a couple more days, then a rehab hospital for a week. When I was in my hospital room they wanted me to get out of bed I walked to the chair and thought I wouldn't make it. i then got up from chair and walked to bathroom. Then I walked back to chair. These short walks took everything out of me. I realized at that moment i've got to do something. Well, I have a sister who is very very healthy and into eating proper nutrition. Well, I ignored her in the past, but thank god, she was there to help me recover. When I was in rehab hospital, she brought a juicer and fed me juices. (The rehab hospital idea was to serve me stuff like mac and cheese and blend it up since my jaw was wired shut). I couldn't even eat apple sauce with it getting caught in my teeth.
Anyways, after 6 weeks and finally being able to eat solid food, I decided to stay eating healthier. I am on a low carb diet. I eat hardly anything processed, if any. I eat nuts, vegetables (low carb) and some fruits (mostly berries and other low carb fruit). I do eat lots of protein such as in nuts and meats. I also eat lots of fiber (flax meal, hemp protein etc). As far as supplements, I take a ton of them, name a letter, I'm taking that vitamin. I take fish oil, borage oil, flax oil. Also lots of other supplements to reduce inflammation. I used to do IVIG to stregthen me, but I haven't had an IVIG in almost 2 years the last one I had was while still recovering at home after my accident. Since then, I haven't had the need of it.
In short I'm trying to say, I get it and not wanting advice. i tried a lot of things and they didn't work. Then, I tried more of what I did before, more supplements, more vitamins, more exercise, better eating. (Real low carbs) etc. Finally it worked.
So, I realize I may be just like the people you are frustrated with. But I also hope you take this and know maybe you'll be lucky like me and changes to our diet etc can help you.
If you folks want, I'll post the supplements I take daily...
One last thing in full disclosure. .I had been taking cellcept for at least 8 years. And, I still am taking cellcept. However, on the last visit to the dr (about 3 months ago). I asked if I could decrease the amount I take and hopefully not take it anymore. He wasn't crazy about the idea. But, he did say if I continue to stay in my current health, he will lower my medication after my next visit (July next year).
Good luck all