A lot of people have disclaimers on their blogs about their positive attitudes and no whining zones and etc. You might notice that there are none on this blog. This is not one of those blogs. I allow myself a lot of foul attitude leeway.
However, recently, my attitude has been so foul even I had to stop posting for awhile.
My POTS has gotten worse in hurry in just a matter of weeks. Just sitting here at my desk is giving me the sweats. GI woes that I thought I had seen the last of have resurfaced. I'm mildly nauseated constantly, worse after meals, with cramping and bloating.
And it's been getting slowly and steadily worse. I'm especially angry about it, because I told my rheumatologist way back in April that my legs were tingling and that this, combined with a speckled ANA (mine are typically normal) was a sign that my body was likely chewing on its autonomic nerves again, and that he ought to do something.
Instead he said that lots of people have speckled ANAs and are perfectly fine and sent me home. And there's nothing I can do about it except sit and wait to get sick enough to go to the hospital. It is the worse. kind. of. waiting.
While I'm stewing in my own helplessness, my joints haven't been playing nice either. I did see a new rheumatologist who was kind and knowledgeable and joked with me as I told her my history.
And then she asked, "What can I do for you?"
And for a second I couldn't answer because I'm more used to being told I can't be helped, and there's no treatment and etc. etc. I thought about it while she went to copy my records.
When she came back, I said I wanted her to believe me. And to do what she could for me and to not be dismissive and to take information from me when I gave it.
It seemed to satisfy her, but it made me reflect on just how little there was to be done in the first place and whether my expectations are too high.
Are they?
Managing my expectations has never been my strong suit. I claim to be a realist, but I'm really an optimist. I never expect that my doctors will be cruel and dismissive, even though it's happened before. I never expect to get worse.
But then, what kind of life what I have going around wrapped in negative possibilities all the time?
2 comments:
you really need to do an elimination diet. it will get rid of the gi symptoms, i promise. get tested for fructose intolerance. i have eds as well. my whole family has it actually and they all tested positive for fructose intolerance. the safest thing for you to eat is chicken and potaotes cooked in olive oil. you can also use my pots drink recipe. i gal of water, the juice of 2 lemons and 2 limes, 10 to 12 tbsps of dextrose, 5 scoops of pure white stevia, and 1/2 tsp of salt. tastes like gatorade. full of vit c, potassium, and salt. the dextrose is the only sugar/carb that is tolerable to people on a fructose or sucrose restricted diet. it will help give you more energy. soft hugs!
I've kind-a thought about it. But it seems laborious and I'm uncertain of the pay off.
Eating my usual off the wall diet of foreign foods, fermented things, raw things and other questionable items is one of the few pleasures I have left to me.
That said, fructose intolerance does seem a possibility and I have a good GI doctor I'll talk to about it...even though I really love fruit and honey and about billion other no-nos.
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