A few days ago, I posted this story about a healthcare crisis that’s giving me a couple options: 1) move to a country with universal healthcare and a Center for Excellence for a specific type of pituitary tumor (it’s in conjunction with something called empty sella syndrome); 2) ask for help in staying in the United States and somehow paying for the medical care and medications I need to hang in; 3) listen to those whiny voices in my head telling me it’s too hard to fight.
So here we go: I’m asking for help. Again.
In the short term, I need insulin copay aid, diabetes supplies, and assistance with doc-appointment copays to keep up with twice-weekly monitoring. I also gotta get to a dentist and a diabetes-specializing eye doc soon. I get my groceries from a foodbank but have to return all the pasta, bread, rice, potatoes, and other carb-rich foods distributed at foodbanks; I need more fresh vegetables and healthful proteins to lower/maintain blood sugars.
How do we know it’ll help? Well, a week ago when my pituitary tumor (I call her Anastasia) kicked my serum glucose up to levels consistently running above 500 and even 600, I was hospitalized and started on some kick-ass treatment to get those levels down. Fortunately for me, the primary cause of this was Anastasia and not a wonky pancreas; this likely saved me from ketoacidosis, a life-threatening condition that can cause coma, blindness, even death.
And it all responded to treatment within less than a week, and as of this morning, I am back at home. If you know about diabetes, you are keenly aware that serum glucose levels in the 400s is still no bueno. However, getting from daily averages of 600+ to a whisker below 400 within a week makes things optimistic in a very pragmatic sense.
I’m now out of hospital (as of this morning) after a full day with glucose levels under 400, with a month’s worse of two types of insulin, syringes that a fellow Kossack brilliantly suggested I buy from horses.com, some supplementary diabetes meds (metformin and glimeperide), a free set of monitoring supplies (including a promise of otherwise formidably expensive test strips) from One Drop, and the belief that I can stay in the United States for now and get myself healthy enough to one day get this tumor removed.
I live on an adventurously meager SSDI income, yet don’t qualify for many assistance programs. Medicaid says I need to accumulate more than $2,300 of out-of-pocket medical bills EACH AND EVERY MONTH in order for Medicaid to supplement my Medicare. Pharmaceutical patient-assistance programs now generally require at $1,000 out-of-pocket “ spenddown” before their funds kick in. I’ve written out so many applications that I’ve got writer’s cramp in addition to the tumor, some chronic leukemia, and autoimmune deficiency. The list of applications I’ve completed just goes on and on. I’m not kidding when I say it’s a full-time job to be poor and need healthcare.
But I’ll put in that work!! We’ve got a lot to do this year in keeping our #BlueWave waving, and I want to be part of that. I’ve got voters to register and candidates to phonebank for and postcards to new voters to be written. I’ve got meets-and-greets to host and broadcast. I’ve got spreadsheets-ful of candidates to ask about supporting common-sense gun legislation and preventing gun violence. As a gun-violence survivor, I’ve got rallies and protests to speak at and march in.
Can you pitch in? That would be awesome! If you can’t, can you pitch this URL to someone or send me some healing vibes?
As tempting as a vacay in France sounds, it sounds NOTHING like being a vol on the #BlueWave team so that no one in the U.S. has to become a medical refugee or face everyday gun violence or be told they’re not white enough to use a Starbucks bathroom.
You can’t imagine how embarrassed I am to ask for help again. I think you might understand, though, that this wasn’t my first option (or even my second). But I’m just not ready to give up yet. We got battles to win!