36. Just a Nightcap of Sorts.
Та же пе́сня, да на но́вый лад.
Same meat, different gravy.
Literal: The same song, but with a new melody.
This is a traditional rite of passage in HSCT, and I will do my part to try to make this part more 'usual', it's reluctantly. This is only the first VISIBLE thing for those who do not have autoimmune diseases wreaking havoc within, and so therefore is the one that the public in general can identify with - so here it is.
Yes, HSCT is chemo, and yes, your hair falls out and stays out for months. And no, no man nor woman relishes being made bald by chemo (though I will admit I'm liking the cooler temp, the feel of the buzzed stubble under my hand as I rub it - that will be gone soon, too). But it is the part that YOU who are not troubled by a life altering autoimmune disease (yet) will be most struck by when you see it.
We do not have cancer (though autoimmune cancers are in the pipeline if not stopped, i.e. leukemia and lymphoma being two that often tag on later to CIDP patient's Dx list). We have autoimmune systems that are actively attacking various systems within a normal looking body. If helping you to see that it takes going bald to get this moving forward will help you understand the seriousness of these illnesses, or the lengths to which those 'normal looking' people will go to regain their health - those you see and wonder if they are malingering or just trying to get a handicapped parking placard by defrauding you of something essential - please look again.
Nothing we know of at this time stops autoimmune ravages within except HSCT
please read this again:
NOTHING WE KNOW OF AT THIS TIME STOPS AUTOIMMUNE RAVAGES WITHIN EXCEPT HSCT
And we need your help - YOU need your help, to get this available sooner rather than later for people you already know have MS, CIDP, Lupus, SPS, Sjogren's, Rheumatoid Arhritis, Crohn's, Celiac, and a long list of others. So look at my bald head, and know that it's not painful. My legs, arms, hands, feet, eye, tongue, are painful all the time. But if the head helps you understand we need your support in getting past Big Pharma's money grab so we and others can be healed and get back to active normal lives, - Hell! To stop being a drag on the USA economy, if you have to look at it that way, then here you go. This isn't a partisan issue - it's your health!
PLEASE LEARN ABOUT HSCT FOR THE PEOPLE YOU KNOW WHO NEED IT, and FOR YOURSELF IN YOUR OWN FUTURE. 2020 is too late for too many, and it's cruel.
I do not like this look. I don't have great hair, but I liked having it just the same. I am smiling because people who love me made hats for me and are supporting me in my own HSCT.
But today I leave my hair in Moscow, and tomorrow, I get my stem cells back and I'm leaving CIDP in Moscow, too. I only wish I could have gone through this easily and safely in the hospital that's within 2 miles of my home and family.
MAKE IT HAPPEN for the next ones coming along, please.
I'm healing, but I'm not letting go of my grudge about the way things are in USA Healthcare, where profit counts more than your health, or yours or my children's and grandchildren's access to curative and reasonable, not horrible procedures that can cure. Maintenance drugs are killing them slowly and making an oligarchy of our Nation at the same time.