If I had to pick one word to describe today, it would be…uncomfortable.
It’s been dark skies and gloom since I woke up this morning. We had a little bit of rain, but not enough to justify these overwhelming aches and pains or the sinus pressure currently building up inside my head.
Then I spent a couple of hours today filling out long-term disability forms for private insurance that I purchased through my most recent employer. It provides about a third of our income (the other two-thirds coming from SSDI) right now. But it doesn’t last forever. In fact, today’s lengthy forms reminded me that this benefit runs out in May.
They also forced me to list my current disabilities and recount my laundry list of symptoms. Clearly a necessary part of the process, but it is physically and emotionally painful to do. It brings all those scary, sad, PTSD feelings bubbling to the surface of my consciousness, and it usually takes a few days to get the anxiety back to a manageable simmer.
Anyway, being jobless with a head full of cancer means living in a perpetual state of financial stress, but today’s reminder was sort of like turning an already super tight screw a quarter-turn to the right. So, even though the loss of income is several months away, I panicked and set up a profile on a freelance jobs website. I took a spelling test there as part of the process and scored “below average.”
This former Spelling Bee Runner up was gutted.
And speaking of gutted. After spending an inordinate amount of time on the porcelain throne this afternoon, I tried to recall what could have caused me to be so sick.
“What did I eat?” I asked Dan, because my go-to is still to blame myself and my food choices for everything that goes wrong in life. (Thank you for your part in that, food-phobic society and fat-shaming doctors.)
So we went through a list of possible causes. “Maybe the cheesecake I made was too rich.”(Even though I have scientific proof that I have no dairy sensitivity, intolerance, or allergy.) “Or maybe those chicken breasts we bought at Meijer were iffy.”
After telling Dan, “but you ate that too” half a dozen times, it finally occurred to me that it’s not my fault. In my case, stress shitting is just secondary to having a brain tumor. I had a rough day and my gut was like, “Woman! Look what I can make!”
While checking in to my hometown clinic for standard chemotherapy blood work last Monday (with my month-old Illinois Blue Cross Blue Shield ACA marketplace insurance), I learned that medical services at Carle are not covered by my plan.
That includes visiting my primary care physician—whom I really need to fill in on my progress—and getting the physical and occupational therapy my oncologist prescribed.
My Washington University/Barnes-Jewish Hospital doctors (in freaking Missouri!) are on the plan, and that’s not insignificant—but what the hell? How does that make any sense?
Up
On Saturday, I received this little letter in the mail notifying me that the government agrees that I am, in fact, disabled and qualify for disability benefits. This is a relief, because unlike the LTD benefits I wrote about earlier, I can get SSDI for longer than 12 months.
Down
The official-ness of being on SSDI makes me a little sad too, though. I don’t imagine I really have to explain why.
Unfortunately, disability benefits don’t even come close to covering living expenses for the two of us, let alone make it possible to pay off mounting medical bills. (I was billed more than $14,000 for my ER visits on June 7 and 8. I can’t even.)
But whatever. Blood and turnips, bitches.
Up
However, now that I’m officially qualified for SSDI, it might be easier to find additional financial assistance on the hospital bills. I’ll start making those phone calls as soon as I’ve got the spoons.
The dentist mailed us an estimate for Dan’s dental work. While it needs to be handled sooner rather than later, it is thankfully not the catastrophic emergency I was worrying about. The work needs to be done in three phases:
Phase I: $584 Phase II: $584 Phase III: $105
That’s a grand total of $1,273. Once we have raised enough to start Phase I, he’ll get it on the books. If you’d like to help us cover expenses, please consider sharing a link to our fundraiser campaign: Help Emily Suess Pay Medical Expenses for a Brain Tumor. (The site tells me every share can help raise another $37.)
Next Steps for My SSI and SSDI Applications
A wonderfully helpful woman at the Social Security Administration office in Effingham, Illinois called me earlier this week, because the Champaign office is backlogged and Effingham staff are helping out.
My initial application—which I completed online—was to see whether or not I qualify for SSI (income-based assistance, as in “we have none”) and SSDI (disability insurance). Do all the applying in one shot, you know.
“Can you tell me the approximate balances of any checking and savings accounts you have?” she asked.
I gave her the estimates, and she let me know that I have too much money in my savings account for the income-based assistance. (I won’t after paying September’s property tax installment, so I can ask them to fire off my application at that time, if I’m still waiting on an SSDI ruling.)
Before telling me that my application was being sent off to Springfield, IL for review and denial/approval, she helped me clarify my answers. (Seriously, some of the application questions are ambiguous and could be interpreted at least six different ways.)
My Current Mood
I’m doing very well, all things considered. While I struggle to complete activities I took for granted 10 years ago, I am content with the dynamic nature of my abilities and disabilities. I wake up in the morning thinking to myself, Even if this is all I am capable of accomplishing for the next 20 years. I can do that. And be happy.
I know not every day can be like that. And that’s okay too.
