Our Health Care System Sucks

AKA I no longer have a primary care physician.

Today, I drove to my doctor appointment in WV.  It’s a two hour drive for me, but I asked her last time I visited (just before my move) if she’d still be my PCP after I moved to Ohio.  I really, really like her, and that’s hard to come by in a doctor and I really didn’t want to look for someone new.  Not to mention the one day I tried to call for someone in this area it was a total disaster.  I figured I could deal with the drive once every few months.

Well, I got there today and they asked if I now have Ohio medicaid.  I said yes, and the registration woman kindly told me that they couldn’ t see me.  I said I would pay for my visit if they wouldn’t accept my medicaid, because I’d rather pay $75 for an office visit after driving 2 hours than come home without having seen her and without my meds for however long it takes me to find a replacement.  The girl said, “You don’t understand, we can’t see you.  I’m not allowed to take money from you, it’s illegal as a medicaid recipient.  You have to go where your card is accepted, and that’s not here.  Someone should have told you when you made the appointment.”

I of course melted into a panic attack because I will be out of meds in about 10 days and now apparently have no PCP.  However, my doc (or former doc I guess) is frikking awesome, as they left her a message with my predicament and she wrote me 3 months’ worth of scripts so at least I have a little time to doctor shop now.

Still, how much does it suck that I can’t go where I want to go, even if I’m willing to pay for services.  The doctor who is listed on my insurance card as my PCP is not taking new patients, which cracks me up.

Ah well, I go tomorrow to Ohio State for new pulmonary function testing.  I don’t expect it to be good since I don’t feel fully recovered from my brush with H1N1.  I stopped in the lab today and my oxygen levels were 93%.  Not that bad, but not that great either.

We’ll see what tomorrow brings, maybe he can recommend a PCP for me.  If not I guess I’ll hit the yellow pages.  Sucks that I have to switch though, and doesn’t make for great continuity of care.

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Health Care Rant

This post probably has to come in two parts, because if you don’t have the back story then it won’t make a bit of sense.  So, the backstory is that I belong to a forum of mamas who like to eat bacon and bitch about the injustices of the world, and yesterday morning I was having a particularly bad day and wrote this:

Warning, rant ahead. 

I really hope that Obama can do something to fix this situation because this really sucks. If anyone doesn’t know, I carry a terminal dx right now of idiopathic pulmonary fibrosis. It isn’t very well known although it is what killed evil kneival! At any rate, I see a doc at Ohio State every 6 months or so, and I’m on a whole plethora of meds including chemo meds and steroids and pain killers which allow me to go about my day with my five kids. In January my dx might be changed to bronchoalveolar adenocarcinoma, a rare lung cancer if I agree to allow the OSU doctor to repeat the open lung biopsy. So I may or may not have cancer.

I am on disability despite having an MA and being one quarter short of my RN because I can’t breathe and therefore I can’t work. So I am on state insurance, medicaid, which has been a blessing because without it I’d probably be dead by now. I just moved from OH to WV, and I am in the process of trying to switch everything and my WV medicaid kicked in Nov. 1. My OH family doc decided he thinks I’m a druggie and will no longer write my pain meds script, and I am searching for a new family doc as well as a local pulmonologist in case I need tending to locally (in case of sickness, pneumonia, exacerbation, etc.) Ohio State is about 3 hours from me and it takes MONTHS to get an appointment there, not exactly helpful if you’re down with something ya know?

So, I’m calling around and there are NO FUCKING DOCTORS around me that take medicaid if you are a new patient. Seriously, the only option I have is the walk-in clinic at the WIC office. What are the odds that anyone at the WIC office clinic knows anything about my disease? Slim to none, that’s what. And furthermore, there is a big ole sign as soon as you walk in that states that they are prohibited by contract from prescribing narcotic pain medication, so they wouldn’t/couldn’t give me that anyway. 

So, let me recap. I have 5 children, the youngest of which is just getting ready to turn 2. My life expectancy is less than 5 years with my current dx, and less than that if they decide it is cancer. I have pain with every.single.breath and I cannot have a script for pain meds because someone somewhere thinks I am addicted… why this is a problem, even if I am, is beyond me. Why I have to live in pain is beyond my scope of understanding. I cannot get a local doctor who is knowledgeable in my disease because apparently state insurance does not pay enough to make it worth a doctor’s time to see me. So here I sit where I will suffer in silence until in the end I wind up in the ER from lack of meds/chemo/steroids or when/if the pain becomes too much to bear.

I am not abusing your fucking narcotics, I am simply trying to enjoy what precious time I have left with my children. I am trying desperately (and unsuccessfully) to maintain a quality of life that allows me to be an active participant in the lives of my family rather than a vegetable lying in bed watching them from the window because I’m tethered to my oxygen machine and in too much pain to make it outside.

FUCK YOU AMERICA’S FUCKED UP HEALTH CARE SYSTEM AND FUCK YOU TO THE DOCTORS WHO CANNOT BEGIN TO UNDERSTAND WHAT I LIVE WITH EVERY FUCKING DAY.

The end.

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