no answers, just dealing with coping

April 30, 2011 at 12:38 pm

I guess I must have overdid it when I tried to run; I ran almost half a block in total inside the house barefoot, then tried to leap up to touch the ceiling, but my feet wouldn’t leave the floor. Felt sore next day, but could still leap out of bed again and scurry-walk one more time this week.
But it’s this edema that is really wracking my body for the past few weeks. I’m so swollen and in pain now that I can hardly sleep at night because of the throbbing in my hands and feet. Can only wear slippers indoors now, and 1 pair of big loose runners to do essential errands downtown.

Don’t know what’s wrong; I wasn’t swelling before. Today my face is so swollen my eyelids are drooping down. Still can’t bend my fingers shut, though I’ve been trying for 5 hours this morning.
No help from the doc yesterday.
Seeing docs always defeats me, so frustrating and vexing to deal with them.

Last night in the wee hours of the am, I remembered one trick to deal with edema. Eat plain boiled white or brown rice. The digestive system transfers fluids from swollen tissues to the digestive tract; as the rice swells and draws more fluid, the swollen tissues shrink. Safer solution than meds too.

It’s always something with this GBS/CIDP. One step forward, then another relapse or medical problem. I’m getting used to it, and most of the time I can cope pretty well. It’s only when something else happens that I don’t know how to cope with, that this whole condition really gets to me. And dealing with those docs and getting nowhere, just a waste of time and money and effort. I wouldn’t have wasted my time to see the doc yesterday, but the pharmacist convinced me to go when I showed him my swelling, and he said they sell diuretics, but the doc would give me a prescription, so it was better to see him.
Those docs are sure put up on a pedestal for everybody to worship. I just wish they’d listen and help me already, and not go back to square one, it’s maddening. This last one suggested I didn’t even have GBS, he stated that he thought I was using a medical walker because of weight-gain, which I must have got from my years of asthma meds.
But I was a trim and strong athlete when this happened; then lost 25 lbs with the GBS; then gained it back and more due to being crippled, though I still walk everywhere with my walker. Dear God, it is such a farce to deal with doctors.