It didn't stop me from working.
It was benign.
The Doctors said they wouldn't do anything unless it got big enough to interfere with my digestion. And, being post-menopausal, that wasn't likely.
Last fall, I started having problems with simple long term standing on my feet. They'd go numb. Pain in my back had me into the MRI, where they found a large mass was pressing up against my spine, causing a disc(L2) to bulge.
By Spring, I started having pain in my right side, and pressure sitting forward.
By summer, I was losing control over bathroom habits.
Time to go in.
Living with Ehlers-Danlos Syndrome means a lot of strange things, most of which I take in stride with no comment.
Waiting upon medical opinion has resulted in some changes.
I have insisted on three procedures, something never heard of, but as all are minimally invasive, I believed I'd keep on my feet, and avoid long recovery times.
Embolization, usually an option that requires no followup, had the physicians only cutting a part of the blood supply, as EDS hypervascularity made a one hour surgery into 5 hours. That was last week.
Acknowledgement is first. 1) I acknowledge now that this is serious. EDS women are prone to a different and more virulent battle with Fibroid tumors. 2) Reliance on history. When this occurred with my elder sister, the SOP was hysterectomy-EDS caused her to suffer complete pelvic collapse, increased fibroid and keloid growth, more surgeries, and loss of the full use of her legs. 3) Developing new treatment strategies. My case is being followed by doctors at three(3) teaching hospitals-UCSF, Stanford, and Saint Mary's.
At this point in time, though I have accrued plenty of sick leave from work, it isn't helping take care of the bills. Having a rare tissue disorder also means limited insurance assistance as well. I need help.
Applications to Medi-Cal have been made, and it takes them months to review. I cannot wait.
Medical bills are one of the primary reasons people become homeless. Sound crazy? In the present political arena, it isn't.
I will be waiting two months for enough shrinkage to occur on this beast before removal. I have been told to limit lifting (less than 20 lbs) and excessive(?!?) physical activity.
I need assistance with bills right away, especially since all the extra medical appointments have me unable to even pay rent(stunning. I thought Healthy SF would cover most).
It is projected that the next procedure will be in November/December.
I will likely need more than what I am originally asking for, but wish to maintain a positive and conservative outlook.
There are housework and deskwork needs as well, but I think I can get some help for those from the non-profits I work with.
- Mark Garber
- Mark Garber
- andrew chen
- Mark Garber
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