Uncertainty

H.,

I gave your post a title, but feel free to change it of course.

I am sorry that you are feeling uncertain about your health status and frustrated with doctors and getting a definitive dx. It is good to vent those feelings, while trying to find the right medical professional who is able to help you.

I hope you find the answers you need soon...and that your upcoming appointment brings some clarity as well.

Keep working your anxiety management regimen to feel your best possible.

S.C.

Thanks it helps. Your therapist seems bang on.
I do listen to my inner voice. It is why I have gotten this far. My original diagnosis is some thirty years old. It is also how I ended up here.
I am afraid there is only so long one can fight especially when you are sick.
Not that I am giving up entirely, just giving myself at this point to stop fighting for what I know
should be far better care. I’m just to darn tired....and I bet there are a pile of doctors out there
that are pretty darn tired too. I am from Canada, I hope that’s okay....and while our health care is “paid”, one would have to understand is just what is paid and what are your expectations of care.
It seems to me there allot of CEO’s and Administrators that are making a whole lot of money not doing a good job. Unless it is to “prove” to our government that they are not getting enough money to run their hospitals. Being paid a 500 to 750 million dollars not to make ends meet seems a little off to me....
I guess I am trying to give myself permission to do much less than I once did.
That is causing me some peace but allot anxiety too. I have never been a shrinking violet when it comes to speaking up.
But equally there is allot of anxiety when I try to keep going when I also my body really can’t, it needs home in a warm bed, sleeping. Is that so bad?
I have always lived by the old “use it or lose it”.
I”m a living contradiction. .....or it could be that it has been over four months since we’ve had anything but snow and cold and virtually no sun....LOL!
Good to talk to someone my friend. Thanks
Tuffymason

So, my rheumatologist meeting yesterday went very well. I am blessed to have her. She has been my rock since 2006. It is very hard for a doctor to meet with me and not think I’m a hypochondriac. There is so much going on, and whether or not they want only to hear the problems “they” specialize in a good doctor just cannot ignore that the knee bone is connected to the thigh bone....
Yesterday, I explained my theory about how bad my Gut and GI issues are related to a flare beginning in my spine, thoracic and cervical mostly. It has taken me a year and a half of reading and feeling what I am feeling to understand it. My theory ends up very simple to understand. When Lupus flares, the inflammation sometimes attacks my spine. The spine has lots of nerves that run through it and from it. Those nerves RUN the body. Sometimes if the nerves are attacked by my own body, MY crazy auto-immune system, the can also stop working. To me I feel it is my Vagus nerve. It runs from the neck, (thus the neck pain and headaches) and run of the autonomic system which runs things that are automatic. Things you don’t control yourself so much. Your breathing, stomach and GI tract. It is why I get so out of breath and so fatigued and why I can’t seem to eat, occasional vomiting, or my digestive system just seems to stop. Just all around misery.
That is my simplified theory. It also gives me secondary issues, bad reflux, bacterial overgrowth in my GI tract, a kind of sluggish bowel, and is why my gallbladder isn’t functioning anymore. In fact I am scheduled to have it out in May.
Anyway, my rheumy listened with great care, totally heard me whether I am perfectly correct or not, she knows and I know I am not a doctor but we also know only I can know my body and how it works or doesn’t work as the case may be.
I am feeling much less pressure and anxiety now. It is scary, as this is a pretty big problem but for me understanding the physical, dealing with and treating it and treating it with that knowledge frees my soul and spirit, thus relieving allot of anxiety and uncertainty.
Wow, what a mouthful! Seems my knee bone is actually connected to my soul bone!😊
Thanks so much for your support and kind words, sometimes like with my rheumy, it’s all a body needs.😘 Tuffymason