There's a lot of stuff backing up on me at the moment, and I'm beginning to wonder how much longer it'll be before I end up wearing a laundry basket on my head and barking Jingle Bells. (That really happened once.) (Don't ask.) This whole thing is a train wreck, but an amazingly boring, drama-free train wreck, so continue reading at your own risk.
If you know anything about me, or even bothered to read the subtitle of this blog, you know that I have Crohn's disease and Fibromyalgia. It's not fun. I haven't been able to work since August of 2008. First I was on short term disability, and when that ran out I shifted over to long term disability. At that point I should have started applying for Social Security disability (from here on referred to as SSDI), but the denial- I haz it. I started the SSDI application process in November 2009, I think. I've been denied twice so far. A couple weeks ago I filled out the paperwork for my second appeal, and sometime soon (hopefully) I should be getting an appointment to go before a judge. In the meantime, I still get my LTD (long term disability) check, and that covers the bills. Sort of. If I'm very careful.
The only reason this works for me financially at all is that I am still covered by COBRA, and my medical insurance is very, very good. The one medication that has done more to control my Crohn's than anything else, and it still can't completely control it, is Remicade. That's an IV drug that I get every 6 weeks. (The typical interval is every 8 weeks, but I need it more frequently than that.) Without my insurance, those infusions would cost me over $9,000 a pop. $9,000 every six weeks. That's over $80,000 a year. That's more than twice my entire salary when I was working, and LTD pays 60%. So clearly, there's no way I can afford this medication without insurance or significant help from the drug company.
Now here's where the scary part comes in: COBRA runs out for me on August 28th. In less than 2 months I will no longer have this fantastic medical insurance. And there's no way on God's green earth that any other insurance company is going to cover me with my medical history.
I thought I had it covered, though. Texas has a high risk insurance pool, specifically designed for people in my situation. And now because of recent legislation there is a federal high risk pool, too. Hooray! Right? Uh, maybe not so much. With my insurance expiring in only 8 weeks, I decided to do a little more research into these plans and find out what I needed to do to apply. It turns out that you have to go without insurance for 6 months before you're eligible for the federal pool. That's more than $36,000 worth of Remicade. The Texas pool is even worse- they won't cover pre-existing conditions (you know, the whole reason I need the pool in the first place) for the first twelve months you're on the plan.
This is not good, folks. I'm just going to lay it out now, pride be damned. I was only just limping along financially as it was, with regular assistance at the end of every month from my credit cards. I can't afford to pay for one month of medication and doctor visits without insurance, let alone 6 or 12 months. (The numbers I've laid out for you so far are just for Remicade. Without prescription drug coverage I'll have at least $1,000 worth of pills to pay for every month, too.) I was already planning to move in with my parents in November when my current lease runs out, because I'm sinking just a little bit deeper every month. ($4,000 worth of credit card debt and counting.) 35 and living in my parents' basement. This is so not the life I signed up for.
Now I'm seriously questioning if I can even make it to November. Without at least the Crohn's medications I could die. (Without the Fibro meds life would be miserably painful and not worth living, but it wouldn't actually kill me.) I came close to death three years ago, and without Remicade and methotrexate the Crohn's will rage out of control again. Just the interruption in those meds caused by infections and surgery earlier this year has caused a flare. I'm terrified to think what might happen if I totally lose access to my meds and doctors.
At this point there is only one thing that could save me: SSDI. If I'm approved two things will happen. COBRA can be extended for another 11 months, and I'll become eligible for Medicare. Medicare probably won't kick in right away. They don't give you that until 2 years after your disability date (and they have some flexibility in deciding what that date will be), but COBRA should cover me until that time. But only if the SSDI is approved between now and August 28th, while I'm still covered. If I'm approved on August 29th, I'm shit out of luck. So anyone who's reading this, do whatever you do. Pray, cast a circle, think good thoughts, send mojo, vibes or whatever you call it. Put it out to the Universe that I need SSDI, and I need it now.
It won't solve all my problems. In a few months I'm still going to end up 35 and living in my parents' basement. But at least I won't be 35 and dying in my parents' basement.