This has been a crazy roller coaster of a week.
Fresh from my pain management victory on Tuesday, I called our local Social Security office Wednesday morning to talk to Ms F, my case worker there. Unlike so many others I know, I was approved for Disability status immediately, but not for actual monetary benefits. I couldn’t get SSD because my last job was with the City, paying for 9 years into OPERS rather than Social Security. I thought the 16 years prior that I’d worked retail would count for something, but no. Apparently not. All I can get from SSD is eligibility for Medicare in July 2015. Which is not great, because it costs $120 per month and a lot of things aren’t covered and there are still copays. So anyway, my only benefits were going to come from SSI, and even when J got his job, I was counting on some money since his salary is impossibly low and we have two kids and very few assets. I turned in all of J’s self-employment info, a loan document and credit card bills showing support from my parents, and all kinds of other minutiae. It was taking forever for them to process. They’d say they had everything they needed, and then 3 more weeks would go by and they’d need something else. Our canceled life insurance policy. Proof of what we still owe on our newer car. I ended up contacting some local politicians for help, because I just couldn’t understand what was taking so long; that did speed things up a bit.
Finally, yesterday I got some answers. But they weren’t good answers. Ms F (I have no idea why she uses her last name only, so odd) pulled up my file and told me the processing was finally complete. She said I would receive a letter with details, but there would be a direct deposit of $2100; then a second direct deposit of $721. And… nothing else. “Because of your husband’s wages.” Shock rushed through me and I felt like someone had punched me in the stomach. I doubled over from the force of it, hugging myself with my free arm as though to deflect another blow. No. No, this just couldn’t be.
“Um… that-that’s it then?” I stammered. I hadn’t educated myself well enough. I’d known what some other people were receiving monthly and based my expectations on those numbers. I had been thinking around $700 per month. Things would be very tight, but at least we would be able to pay the mortgages and most bills every month. Just living on J’s salary… wouldn’t be living. Our monthly outgoings NOT INCLUDING food, gasoline, girls’ activities, entertainment (obviously) and incidentals are slightly higher than J’s monthly take home amount.
In a daze, I accepted Ms F’s casual shattering of all my hopes and expectations for our financial future and hung up. Tears burned in my eyes. I lay down on my bed in the fetal position and sent a text to J, who felt sure it had to be a mistake. I thought so too at first, but a Facebook friend posted a link with some estimations of how the SSI amount is calculated and it did seem likely that Ms F was correct. Still, when the letter comes I will take it into the office and demand a thorough explanation.
This was horrible, earth shatteringly bad news to receive. Options now are either ridiculous and extreme, or paltry and not enough. A fake divorce. Foreclosing on the house and finding a shitty rent-controlled apartment. Me going back to work. J taking on more clients and working 12 hours per day.
WHEN are things finally going to get better on this front? Our family needs a fucking financial break, it’s just time. We always struggle. There’s never enough. I am forty years old and totally broke, destitute, relying on social services and parents. Money stress like this on top of chronic illness… and J too, with his PTSD… bad. Bad bad bad. J was upset but kept it together at first, reassuring me that it could be done, we’d manage without divorce, foreclosure, or bankruptcy. Mom said they could still help out some. We will refinance the house, J will work on his couple money-making websites, we will apply for food stamps. Always keep eyes and ears out for ways to make money. J asked me to post on Facebook that he is available to privately tutor or counsel local kids on a sliding scale, and already someone has expressed interest. There are too many problems with the idea of me going back to work unfortunately, but J will get his administrator license and move up either at his current agency or another. The $2800 buys us a bit of time, but not THAT much time.
Later that night, J freaked out a bit. Then this morning he was horribly depressed, which is hard to watch. I had woken with a fairly bad headache, which was not a surprise. Whenever there is a big emotional shock to my system my head pays for it big time. “Thank goodness I got that prescription,” I thought to myself. J left for work, despondent, and I took a couple Percocet and a Zofran. If my pain clinic appointment had gone badly as well… I don’t even want to imagine.
However, the Percocet didn’t work. I am out of Sumatriptan tablets until Monday at the soonest; the prescription was out of refills. I was also out of injections, but had called it in, however those are ALWAYS on backorder. I don’t know why they can’t just get a whole case of them instead of one cartridge (of two injections) at a time. So I began to feel some serious panic as I helped the girls get breakfast and clothes and shoes for their Safety Town and Wilderness Explorers camps; brush teeth let the dog out do hair and I began to feel nauseous. It felt like screws were digging in to both temples. Totally desperate, I swallowed 4 200 mg Ibuprofen soft gels which I hadn’t taken in two years because I have an NSAID ulcer (kept them in the house for J). Wait, had I had one or two Percocet first thing in the morning? One right? I can take as many as three. Two more. We got in the car with the dog, and when dropping X off at the Nature Preserve Asia was dragging me all over the place because I’d forgotten the Gentle Leader leash that makes our big, impossibly energetic dog easier to control. My head in a vise, face flushed, and skin prickling, my arm being ripped out of its socket by my straining crazy dog. Isobel to Safety Town, okay. Home. Bed. What to take? Use the one remaining DHE shot? Could totally backfire, make me worse. What choice did I have? Oh nooooo maybe I had already taken two Percocet, four total means too much acetominophen and I had that horrible sick sweaty feeling oh god. Fucking acetominophen, I hate that shit!
Asia in her crate. Okay I have two hours before picking up Isobel. I get the DHE and a basin in case I puke, my soda, and head upstairs. Strip to underwear, turn on R2O2 (my oxygen machine, which only goes up to 10 LPM), collapse on the bed, put the mask on, force myself to be calm. The mask makes me feel oddly claustrophobic. Pain ratchets up and up and before I know it I’m at an 8. I warm up a heatie in the microwave I have upstairs for that purpose. I can’t get comfortable, can’t get into my “zone,” am nauseous enough that I know not to take more pills, like the Zanaflex that would knock me out, or Benadryl. Twist and writhe, back arching, whimpering. Oh noooooo.
THIS is why I can’t “not treat” a migraine. This is why C’s directive of only injections, only two days a week simply DOES NOT WORK. My pain never ends on its own. It never hangs out at a six for a while and then disappears like magic. My pain explodes and expands, it consumes. If it catapults above a 4 before I catch it, yes, narcotics are useless.
I call my pharmacy to ask about the injections. After 3, they say. It is 10:50. I feel dizzy, weak and sweaty and yep, I’m going to puke. I stagger down to the bathroom because the basin method is not ideal and hug the toilet bowl as I retch and heave. Empty and drained I know I am in for a very, very long five hours… if the injection will even work after the migraine rages unchecked for that long. It is very rare for me to vomit and not end up at the hospital. I really really don’t want to go. And of course, I’d made Independence Day plans with friends as our fireworks are on the 3rd this year. I almost never make plans for fear of having to cancel… I’d been looking forward to it and had bought a pretty new dress before the bottom fell out of our financial situation.
There is no way I’ll be able to pick up Zo from Safety Town. I stagger back upstairs with a phenergan suppository and text J. “Can you ask my parents to pick up Zo and can you pick up my injections after 3 and I just puked should I use this last DHE?”
“Yes. Yes I can get them at around 4. No DHE, it will make you worse since there’s only one left.” I knew he was right. But to wait until 4 o’clock… 4 more hours at a 9 or 10. Oh god.
And in fact those hours were hellish. I didn’t vomit again thanks to the phenergan, but stayed uncomfortably nauseous. Oxygen didn’t even help me relax, the damn mask made me feel trapped. Twisted in my tangled sheet, rotating heat and ice on my forehead which was flaming on the inside, swollen and twisted veins shrieking out their agony. THIS is why I have to treat every headache. If I’d had a sumatriptan tablet when I’d first gotten up I’d have been okay. Or an injection. Whimper. Moan. Twist. Arch. Dig into pillow. A few lines of “Fixer Upper” from the Frozen soundtrack were stuck on repeat in my brain, which is a thing that happens. (“Although we know he washes well/ He always ends up sort of smelly/ But you’ll never meet a fellow who’s as/ Sensitive and sweet!”) My fist pounding, ice dripping its condensation into my tangled hair. My skin feeling sunburned – allodynia. I could not lie still.
Touched base with J again, warned him we might have to hit the ER. Said, I can’t pick up X either. Toss and twitch, toes curled, legs cramped, frustrated and scared. Screaming.
Finally I started to drift in and out of consciousness. I heard J’s solid tread on the stairs and opened my burning eyes to see him enter the room with the broken open cartridge, syringe and Q-tip which we have to DIY as a plunger because auto injectors are not being made at the moment. The clock reads 4:06. He sits and says, “Leg? Do you want me to do it?” I nod, I’m not capable of anything. A prick and sting, and I feel the medicine immediately. Wow wow wow… it is going to work. I can already tell. At least to take a significant edge off. Even a 6 would be awesome, tolerable. I’d sleep.
J goes to do some things and I am finally able to relax a little. Breaths are deeper, easier. The warm Imitrex feeling spreads through my stomach and chest. Sometimes it is not a good feeling, but it is today. My legs get heavy. My neck loosens up. The twisting in my temples slows to a stop as the pain recedes like the tide going out. My stomach feels hollow. I’m hungry. Oh, thank god. Thank god. There’s my 6… and 5… 4… 3. J returns and I smile. A grin breaks out on his worried face. “Yes!” He exclaims with relief.
“Hi,” I say. I am back.
I ask him to powder a couple Percocet into applesauce, easy on the tummy and quicker acting. The pills take my 3 to a 0. It’s over. J makes me a sandwich, and I rest gratefully, floating on a no-pain cloud.
I can’t go to my friends’ gathering, but I might be able to make the fireworks. And I do.
As for our financial situation… the $2100 has now been deposited. We will take everything one day at a time, just as I do with my migraine treatment. It is the best we can do, and that has to be good enough.