Yeah, I understand all of what you said. I have a good friend who has MS and is no longer able to stand, walk, do her favorite hobbyof jewelry-making due to not being able to use her hands, etc. When I think of her I feel fortunate that I am able to do all of those things but when I am in the throes of acute pain in my feet (not all of the time, only when it really flares up) I lose track of her and suffer inside myself. So it's all relative and each of us suffers in his/hers own way. Thanks Dave, for your insight, I treasure it! Carole
Dave Noel S said:
I think it's clear that everyone who survives GBS experiences very different symptoms. Those sympoms direct our reactions. Most of us are affected by fear. Now that I'm facing cancer-and my wife divorced me too, a common symptom- I compare chemo therapy with a flu shot and my fear tends to choose the road less taken.
You need to do what's right for you. MDolich chooses to avoid flu shots and that brings him peace. After two rounds of flu, brochitus and now cancer, I feel safer with immunizations. Don't ask about the end result: ask us to share experiences. They're all different. And I speak of what we endure starting 24 months AFTER completing treatment. None of us are wrong. Neither are you. But do you rise from bed every day? Can you microwave food on your own? Can you bathe yourself? Are you able to wash? Change your sheets? Keep track of your meds? Remember nouns? Can you read for more than 15 minutes? Have you the energy to relieve yourself in a urinal? When a cat sits on your lap can you tolerate the pain? Have you the energt to get the mail? Bring in groceries? Respond to mail?
We're all different and there is no wrong way to cope. Yes, I get immunized, particularly given what chemo does to the immune system. "Weempy" is a brilliany word and credit to you for coinage. Most of us weep alone for many reasons. We already know how GBS harmed and scared our children, friends, family. Inoculations are part of that. Guilt. It's there.So we don't weep in front of them though at times we want to-we NEED to.
Cancer could be a gift. Stay with me. A get out of jail free card to put an end to the dateless, lonely, painful lives we have. But my mother's still alive. I have two 20-something daughters, a 3 year old granddaughter and though my daughters are painfully leaving it up to mr, my mother is insistent that it's my duty to fight the cancer. She's 80 and wise. Guilt. And fear.And chemo-therapy.
So tomorrow I'll drive 130 miles round trip and sit in a naugahyde chair with three others for four hours, court TV above&, books, and conversations. Pot brownies from Cliff's wife. A flu shot? Maybe it's easier for me. Maybe I've had good luck. There.
In 1980 there was a 26% increase in GBS. The CDC and other agencies did research to find a similarity and they stopped at discovering they'd all had a flu shot. the FDA wasn't conducting research but was, by law, given these results. If one is testing a new medication and has 1,000 subjects and even ONE subject reports a headache, by law it must be listed as a potential side effect. But if there are two areas of medicine that requires more understanding it is the brain and the nervous system. Until 2007, it was believed that we used only 10% of our brains. Does it make more sense that we've no idea what the other 90% does? Think: the world was once flat. The universe revolves around the earth. Preserve bodies in Pyramids for their return. Blood carries evil spirits. People with behavioral dissorders were withes; then possessed by demons. Are you prepared to say we understand it all? That GBS-the cause of which is STILL unknown-is to be left in the hands of only doctors and social media support groups? No. Trust yourself.
I had hoped that this would be a forum for sharing experiences; for finding camaraderie; to weep openly. Instead, because of our individual isolation this is more "Should I", "Have you?", and "Am I?" A much needed forum, but patients from 1980 are here with patients still overcoming paralysis in a high tech rehab.
Read all of us. Read Joseph Heller, FDR. talk to neurologists, immunologists, infectious disease specialists, psychologists-8everyone. Educate yourself and then trust your own judgement first. No one knows your body as you do.
My first flu shot scared thre hell out of me, but I looked at the recurrence of GBS, the triggers in CIDP and with terror, signed 14 pages of release forms. I was more fatigued for a few days after inoculation. Not since. Am I lucky? No. Because relapse of GBS is far more rare than GBS. I'
Was a musician and composer but now I use left brain statistics and common sense and what is right for me.
How many people who've told you they will never have a flu shot had even ONE thereby being able to give you real feedback as to what happened? Discount them because within your sample group they do not meet the standards by which you need to measure.
Take control of your body, your health care, your LIFE.
If I can do more: dnseaman62@gmail