Sept. 27, 2019
A group of blind men heard that a strange animal, called an elephant, had been brought to the town, but none of them were aware of its shape and form. Out of curiosity, they said: “We must inspect and know it by touch, of which we are capable”. So, they sought it out, and when they found it they groped about it. In the case of the first person, whose hand landed on the trunk, said “This being is like a thick snake”. For another one whose hand reached its ear, it seemed like a kind of fan. As for another person, whose hand was upon its leg, said, the elephant is a pillar like a tree-trunk. The blind man who placed his hand upon its side said the elephant, “is a wall”. Another who felt its tail, described it as a rope. The last felt its tusk, stating the elephant is that which is hard, smooth and like a spear.
The earliest versions of the parable of blind men and elephant is found in Buddhist, Hindu and Jain texts, as they discuss the limits of perception and the importance of complete context.
On Weds. I went to a doctor at Sinai to get a referral to go to their Rehab Mobility Center. The doctor looked up my chart and wrote the following diagnosis:
Cerebrovascular accident (CVA) due to embolism of left middle cerebral artery.
Crohn’s disease of colon with complications
CIDP (chronic inflammatory demyelinating polyneurapthy)
CIDP – that is a mouthful – and the first time I heard it put that way.
You see, the GI guy was like one of the gentleman who worked on my colon, and the PT worked on one set of muscles, and the OT is working on making life easier to live with these disabilities, and every few months I have a visit to a neurology ward where I haven’t seen the same doctor twice.
And so, I looked up the symptoms of CIDP and found that I had almost all of them. Some were treated by the OT person, but there was no neurologist at the top of the heap who could see the entire elephant.
SO WHAT IS CIDP
Healthy nerves are wrapped in a sheath called myelin, much like electric wires wrapped in rubber insulation. CIDP is an autoimmune disease (I already have one – Crohn’s) where anti-bodies go awry and attacks the myelin.
I’m obviously not a doctor, but I was tested for this when two doctors stuck needles up and down my left left and measure how much electricity was being passed through the nerves, and how long it took to get from my foot (for example) to my thigh.
I knew what they were testing for, but nobody ever told me.
So I felt short-changed by the entire system when I got back to the castle, because nobody was treating the CIDP and most of the literature said that it was progressive and that it was fixable if caught early.
There were various treatments, besides e-stim (electrical stimulation) which I have been doing, but in a haphazard way. And of course prednisone is recommended as the first choice (but that is dangerous stuff).
So I didn’t write for two days because I was moping. Then I picked myself up, and started acting. I texted this info to my PCP asking for a referral to a Neurologist who specializes in this stuff. And I made an appointment with the wheelchair/scooter Rehab at Sinai for this Weds (very fast).
This morning I used my microwave to make scrambled egg sandwich (and yesterday I had bananas in my yogurt.)
May not sound like much, but I haven’t had a real egg, or a banana since I got here.
My mood began to improve, as it always does when I can do something about my situation. Now I’m about to go onto Amazon and order bed risers, which the OT (the greatest) recommended since the bed is too low for me to get out of easily.
BTW most of this small stuff I’ve been picking up (jar opener, nail clipper for disabled, risers, microwave egg makers etc) is from the cash you’ve donated. So thank you all. I have actually received $900 in my Castle account. But still no debit card or checking account to use the money.
So I remain very grateful for the help. By next week I should be able to stand on my own two feet. (An ironic turn of phrase if ever there was one!)