Apr 23, 2018 | Brain Tumor, Breaking News
Chances are if you’re friends with me on Facebook, you saw some drama go down on my page this weekend.
It started with me posting a few updates about my husband being denied the meds he needs. That post led to a woman telling me to “shut it.”
It was her opinion that because I wasn’t working, I had no justification for lamenting our situation (which is that I have brain cancer and my caregiver has a chronic illness that is going untreated, not because the condition is untreatable, but because our insurance–Medicaid–claims there is “insufficient medical necessity” for the medicine prescribed by his doctor).
That he doesn’t need the Humira for his psoriatic arthritis is an outright lie, however. Just look at this. Look. At. It.
Anyway, in discussing that we have been on Medicaid and SSDI openly online, countless trolls and bots have suggested, like this woman, that patients like me don’t deserve the health care we do get and have no right to complain about the health care we don’t get.
‘Mer’ka. Yeah!
This weekend was the first time, though, that someone I knew had told me that I specifically am unworthy of care or of demanding a certain standard of coverage for my husband.
***
At first I was seething with rage. Today that rage has given way to hurt and a complete disillusionment in all of humanity.
I spent two hours at the hospital getting IV fluids this afternoon. Alone with my thoughts for all of that time, I just kept wondering how many other people thought I shouldn’t be allowed to have the infusion. It was a depressing couple of hours for sure, and I haven’t yet completely pulled myself out of the funk. (I will in my own time, don’t worry.)
I used to think that people who cried “freeloader!” just couldn’t empathize with a nameless, faceless group of people they’d been told to hate. That if they knew someone who was sick, they would change their tune. Step up and demand humanity from their family, friends, neighbors, and political representatives.
Good night was I ever wrong.
***
When a friend of mine suggested I come up with something nice to say about this woman to help me shake off the dust and dirt, all I could think of was this:
“Well, if you’re looking for a friend who doesn’t coddle you with positivity just because you have brain cancer, Brenda’s* definitely your gal.”
I just want to say that everyone deserves good, affordable health care. Even Brenda. And words can’t express how begrudgingly I say that.
* Not her real name.
Jun 17, 2017 | Brain Tumor
On Wednesday, a new recliner arrived at our home via UPS. Believe it or not, I have not had a recliner in my home since something like 2003. That was three cities and a whole state ago. Sheesh.
For weeks, I’d been spending too many waking hours in bed or trying to get comfortable and see the TV from the living room couch. My neck and shoulder pain was only increasing, and I was depressed. Spending hours upon hours in bed made me feel sad and incapable.
So, I used some money from my YouCaring campaign to purchase this power recliner from one of those online stores always being advertised on HGTV.
I didn’t have to leave the house to shop for it. (Going out in public is hard—harder than it was when I was getting daily radiation treatments, but I’m also a little skittish about the possibility of getting “normal” sick because the dexamethasone “may lower my body’s ability to fight of infection.” So I stay home except for the odd trip to the ER.)
The chair basically just snapped together. And it’s comfortable. And my cat Izzy likes to join me for afternoon naps.
Now I can sit by the picture window in the living room and watch the birds and squirrels at the feeder and bath. When I lie back, I can look up and watch clouds float by. And when we’re binge watching Orange is the New Black, I can watch relatively pain free.
It’s nice.
***
Speaking of the dexamethasone, I’ve been back on it for about a week now. I generally feel better, but I’m not thrilled about regrowing unnatural facial hair. (If I’m honest, probably another reason I stay home these days.) They might be wispy and blond chin hairs, but they light up like the sun glistening on Lake Michigan when exposed to daylight.
The more important thing, though, is that I am eating and drinking again like a normal person. Everything tastes delicious on dexamethasone. Everything.
***
Thursday night I signed us up for health insurance through the ACA exchange. We still don’t officially have health insurance. They have my money, but BCBS of Illinois has things “under review.” It really, really sucks losing your job because you’re sick with brain cancer and losing your health insurance at the same time.
I know that, at least for now, I’m not supposed to be declined insurance for a pre-existing condition, but I don’t trust insurance companies. They’ve got ways of wriggling out of their responsibilities. And I am quite aware that should something not go in my favor, I have next to no resources to fight them.
What bearing should a person’s employment have on their ability to access healthcare? Why should someone with so much health-related stress be forced to navigate a ridiculous bureaucracy in addition to fretting about paying the mortgage without stable income?
I have to stop thinking about it or I stress too much for my own good.
***
While there’s plenty for me to worry about, I do want you to know that I’m more optimistic than this post lets on. I can’t stand the thought of people worrying about me too much.
Thanks to all who have donated and promoted my fundraiser, sent cheerful gifts, messaged me with words of encouragement, and who check in on me when I get a little quiet.
Enjoy your weekend!
