I am creating this GoFundMe in support of my dear friend Sharon who has been facing some medical challenges. My hope is that we, her community, can help cover her monthly insurance premiums and offset her cost of living to allow her to stay close to UCSF where she has been working with several specialists. Sharon will be directly receiving all of the funds donated here, minus the fees charged by the website. While we've placed a "goal" of $8,000, the real goal is to support Sharon as long as she needs, and the realist goal of all is for her to get better. - Jess
A (updated 7-8-17) note from Sharon:
I am sorry it has been so long since I updated.
It has been a long 2 years of testing and continued medical care. This spring my doctors completed enough testing to mostly know what is going on (we'll get to the 'why' further down). It's taken me some time to adjust, cope with, and accept the news... and what it means for my future.
I have been emphatically saying thank you as best as I can in each update because it's been hard for me to get back to each of you personally yet. But I really truly cannot possibly ever thank each of you enough for the donations you made. It's important to me that you all know how incredibly vital this account has been, and exactly what you all achieved with it and the fundraiser.
I'd like you to know exactly what you helped do for me.
Because of your incredible generosity here, and with the fundraiser, I have been able to bridge my health insurance coverage over the waiting period between becoming disabled (on SSDI) and becoming eligible for Medicare.
Because MediCal (not the same as Medicare) is so restrictive in it's options, care, and diagnostic testing, I would likely not have been properly diagnosed if I'd lost my private coverage. Nor would I have been able receive the life saving care UCSF, Stanford and One Medical have provided. My daily IV infusion without insurance (or with very poor coverage) is ~ $350/day.
Although I will have a life-time of medical debt to contend with, durning this scary uncertain, and sad time in my life of being so ill, and loosing so much *I did NOT have to lose my health insurance in addition to everything else*.
And that is because of all of you.
SO * If there is any way at all that I can impress upon each of you that you helped save my life, this is me trying.*
My (brief) Diagnosis is : Autonomic Neuropathy (failure of the Autonomic Nervous System to function properly) Anthem's way of phrasing it was: “It appears you have something wrong with the nerves in your body.” << It's almost absurdly simplified, but I found it actually sums things up real fast.
But (for those interested) here is the NOT fast version:
Your autonomic nervous system [ANS] is split into two sections. Your Sympathetic Nervous System and your Parasympathetic Nervous System. The two work hand in hand to regulate control of your body's autonomic functions such as (but not limited to): Heart Rate, Blood Pressure, Body Temperature, Sweating, and Digestion.
The nerve signals that control all of those functions, how, if, and when hey work, have failed to function correctly in me.
As most of you are aware my GI system has been the most heavily affected. Because of the GI system failing to function correctly, I am still unable to process and absorb enough nutrients from eating orally on my own, so I will need to remain on TPN (12hr/day infusions of IV nutrition) indefinitely, which means the central line in my chest will also have to also remain indefinitely. I have to to eat and drink a little each day despite the difficulty it brings so that the digestive organs do not develop secondary problems from nonuse.
Some of you may remember that shortly before I had to leave my position at Kumara, I had started wearing a bag of ice wrapped in a sheet on the back of my neck (especially outside). It looked like I had a neck brace on or had tied a travel pillow around my neck. At the time I was beginning to have a difficult time in the heat.
My ice packs were my feeble attempt at staying cool. I did not know why this was happening at the time, but it turns out that was just another symptom of AN.
My Doctors at UCSF, CPMC, Stanford and One Medical have all been OUTSTANDING. It's incredibly lucky for me that it turns out that THE leading Autonomic Neurology center in the country is located here at Stanford.
Because of your donations I have been able to keep the insurance that covers a part of the cost of Stanford's Autonomic Neurology Specialists. I am continuing working with my current team of doctors to help with supportive care (TPN/medications), palliative care, PT, and life adjustments.
The WHY: AN can be caused by quite a long list of things, or remain idiopathic (unknown). Right now the front runners seem to be genetics, and/or my previous surgery which directly involved (and severed) a group of central nerves of the ANS.
It's been... 'a process'... adjusting to a diagnosis that cannot be cured. For most people AN issues take a progressive path (as it's been with me thus far).
The hardest part of all of this has been facing that I cannot go back to teaching in an ECE classroom.
There is nothing in the universe that I loved or cared about more than my career and my students (many of you, know just how true this is). The only thing I loved second to teaching, was backpacking/ camping/ hiking, ...which I've also had to let go of.
Please forgive the long delay in posting and the absence of a more personal thank you to each of you (yet). I have attempted to write this update several times and to individually fill out thank you notes, and each time it has lead to tears. I miss my old life and your kids so very much. I am working on trying to shift my heart over to coping with a different life expectancy and a remaining life of disability. I am beyond fortunate that my parents, my Dad and (step) Mom have been a source of unwavering love and support.
Part of finding new ways to adjust my life to my situation and illness so that I can gain back some life quality is creating a way for me to work on art even when fairly ill. (I've had a difficult time with this thus far.)
So a few weeks my ago father came down for a visit and helped build a custom set up for me to work on art even when stuck in bed. I am hopeful this will make it more possible. Although nothing can replace teaching and hiking,... I will be able to work on art again. :)
Thank you so very much (again and again) for helping me.
You all really did something very incredible.
[the previous updates chalk full of detailed personal medical tests and results have been moved to an archive for privacy reasons.]
- Bethe & Jim
- Bethe & Jim
- leslie barker
- Jessica Hollinger
- Maxine Spitalewitz