ZombieKitten said:

I really wish it weren't true, it must seem absolutely barbaric. But I'm another victim of this broken system--we all are, some way or the other. The things I could tell you about my own health issues in the past would have you biting down on your fist but thankfully, this thread isn't about me (and I don't want to re-live the past, as my own nightmare's far from over).

On the upside, I'm so glad that your beautiful boys can get medical and dental care when they need it. No kids should have to be victims of their ancestors' mistakes such as these.

not to sound like an idiot, but would pot help?

at any rate, I will pray for you PM

IAintTheOne said:

That's what I'm talking about!

Thanks, Finess.

No, I'm not kidding. I'll start at the beginning.

I was born with Ehlers Danlos Syndrome, an extremely rare genetic disorder that causes my body to produce the wrong type of collagen. Collagen, of course, is in your skin, your ligaments, tendons, eyes - it makes up 30% of the human body. In practical terms this means that wounds don't heal properly, and that my joints are prone to dislocation and premature wear and tear. This means I am in pain all day, every day. My knees, shoulders, hips, wrists and fingers hurt constantly. When untreated, the pain makes it impossible for me to focus on work, relationships, my family, and everything else I love and am responsible for.

Because my disorder is so rare, doctors are unfamiliar with treating it. Even though I show up with medical records, evidence that I have taken pain medicines for extended periods without ever abusing them, and guides written by medical doctors for medical doctors explaining how, why and which pain medications are effective for this disorder, it is extremely difficult for me to find a doctor who is willing to help me. I am treated like a drug-seeking junkie time and time again. I guess doctors are so used to people coming in and seeking these drugs for recreational use, they just have a knee-jerk reaction - especially when a patient is coming in with something they've never heard of.

About a year and a half ago I finally found a wonderful doctor who listens, was willing to learn about EDS, and will prescribe the medicines that help me get through the day. Yay! So what's the problem? My insurance company refused to pay for some of my physicals, leaving me responsible for bills we can't afford. This resulted in my being "financially discharged" from my doctor's office. Meaning he cannot see me or prescribe my medications unless I come up with the money. As this is impossible, I have been trying to find a new doctor, with the above mentioned soul-crushing results.

Today I tried again, at another doctor's office. He had come highly recommended by a friend, and I went in with high hopes. I left in tears. He of course refused to prescribe my medicines, instead speaking in hushed tones about addiction and how he can help. I wanted to smash his fucking face in.

I feel utterly useless. I feel defective and defeated. I fear that I will end up unable to work, unable to bring in the money that is needed to take care of my six-member family. This makes me feel worthless. I WANT to work. I WANT to finish school and get my nursing degree. I want to cook dinner for my family, clean the kitchen and walk the dog. What if I can't? Then what the hell am I?

Chris is of course incredibly wonderful. He is my strength and my comfort. But he worries, and he is only human. He stresses about the effects of the medicines, about the increasing deterioration of my condition, and of course about his wife saying shit like "I want to die." When I let everything get to me like this, I know it upsets him. Which makes me feel more isolated, more like a piece of shit.

I don't even know why I'm posting this, and I'm sure I'll regret it. I just want someone to tell me to snap out of it. Tell me to see the light at the end of the tunnel, even if I have to scratch and dig the goddamn tunnel myself. Tell me there are people who have it worse than I do and they still find a way. Tell me something good, Chaka.
[Edited 8/10/09 16:50pm]

You all have no idea how much each post in this thread means to me, as well as each Orgnote I've received.

I'm reading each one and you all are uplifting me, humbling me and encouraging me to press on. That is priceless. I will report back later, after I've spoken to someone at EDNF.

I'm on my way to work, but all day I'll be thankful for your prayers, your encouragement, for reading this whole thing in the first place.

God Erin, I don't know what to say I wish I could reach through the computer and give you a big, pervy hug right now. My cousin is going through a similar situation with his healthcare provider to get treatment for his Crohn's disease.
Have you thought about switching to a new insurance provider?

contacting the organization that was listed in this thread would be a great start. have you googled to see if there are any online support groups or bulletin boards? you might be able to find some very useful support that way.

i hope you get some relief AND some useful results soon.

your health system sucks so bad. I'd suggest coming to live here, but until you have permanent residency you're no better off financially

So sorry to see this Erin.
You always seem like the picture of pure health, everytime I have seen you post a picture. You are a very strong person indeed to be going through this. My brother in law needs some medical attention for an enlarged prostate, and he has no insurance, and does not qualify for medi-cal since he owns his own home. Life can be a fuck. My heart and thoughts are coming out to you.

abigail05 said:

It does help. It relieves some of the pain, it takes care of the nausea that the pain pills sometimes cause, and it helps with depression too.

BUT, many doctors around here will give you a drug test before prescribing any pain meds. If you test positive for anything illegal you're shit out of luck. So I can get drunk off my ass every night if I want to, but I'd better not smoke any harmless plants if I want them to give me some liver-killing drugs.

Happy update:

Thanks to some help from my sainted mother, I paid the doctor bill last week. After some struggling and wrangling, I am now my doctor's patient again and picked my meds up today. I feel so, so much better. Going to work all week without pain medicine sucked. I work with severely disabled people and my job is very physical. Plus we were very short-staffed this week, so my co-workers weren't there to pick up the slack.

Anyway, I'm not cured and never will be, but my pain is managed for now - YAY! I feel human again.. I can take care of my husband and kids instead of them having to take care of me.

Thanks again to everyone for your support when I was feeling so low.

Happy update:

Thanks to some help from my sainted mother, I paid the doctor bill last week. After some struggling and wrangling, I am now my doctor's patient again and picked my meds up today. I feel so, so much better. Going to work all week without pain medicine sucked. I work with severely disabled people and my job is very physical. Plus we were very short-staffed this week, so my co-workers weren't there to pick up the slack.

Anyway, I'm not cured and never will be, but my pain is managed for now - YAY! I feel human again.. I can take care of my husband and kids instead of them having to take care of me.

Thanks again to everyone for your support when I was feeling so low.