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.

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!
[Edited 8/27/09 14:25pm]

Snap the fuck out of it Erin..... Chris loves you we all love you if there is anything you need you know how to find me dont you?

Have you tried contacting the Ehlers Danlos National Foundation? www.ednj.org

Maybe they can help you find another doctor...or a way to appeal to your insurance company?

IAintTheOne said:

That's what I'm talking about!

Thanks, Finess.

Genesia said:

I've used their resources, but I haven't reached out to them for help.

Seems like a no-brainer now that you mention it!

Thank you.

I'll email them right now, and call them in the morning.

I should have made it clear that

I AM NOT A SUICIDE RISK.

Just extremely frustrated and feeling like I'm at the end of my rope.
[Edited 8/10/09 16:49pm]

PunkMistress said:

I hope they're able to help.

PunkMistress said:

you know I love you dont you?

Do contact the EDNF.

In the meantime, have you attempted to appeal your insurance company's decision? Seem a well-prepared appeal, complete with corroborative statements by your physician of the treatments' necessity, could go a long way.

Oh jaysus,

I have no advice. No words of true comfort.
Just that I'm thinking of you, and will do one of my Buddhist ceremony thing for you tonight

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

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?

PunkMistress said:

This is the best idea so far. Here's hoping someone there can help, have some ideas, some precedent, someone else who's had to fight with their insurance company.

I'm so, so sorry you have to go through all this.

Man, this is the main thing that sucks about our country. We don't value the health and well being of our people enough to declare healthcare a right and not a privilege for those who can afford it.

Lamma & Genesia's advice is gold. I'll be praying for ya. Hang in there.

Awww man!!!

You're good people, you will be fine, so like threadbare said, hang in there! We'll pray for you at the spirit house.

I got nothing to say that hasn't already been said.

What I will add is all my love to you Erin.

Stay strong! Kick their asses!

hope you get the help you need

http://www.ednf.org/

hang in there!
[Edited 8/10/09 21:52pm]

I don't have any good advice, but I just wanted to add my thoughts and tell you how kick-ass you are. You'll tackle this too. Here's to hoping you can soon look back at this as just a minor bump in the road...

I'll pray for you and put you on the prayer list at our church.

That sounds like a really rotten disorder. You're way tougher than I am.

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.

Holy fuck, I had no idea.

You're in my thoughts Erin, thank you for sharing, I now think worlds of you...

All my prayers to you.

I believe that many things happen in succession. I don't how your previous relationships went but it seemed like you have finally found the right one.

You have a wonderful guy. You have a great bunch of kids and an instant bigger family. Maybe now is the time that you're going to get a break and find some relief from this painful disorder.

I'm sure all this was pretty obvious to you. But sometimes it's nice to hear from someone else.

Thank you for bringing this to light. I had never heard of this before.

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

at any rate, I will pray for you PM

Illness is a real motherfucker!
If it's not one thing, it's the other. And our system is worse. It's downright de-humanizing,, to this part of your struggle I can relate.
Fight, honey. I'm sure you have it in you.
Why did you post this, you ask? We all need to voice our despair from time to time, that's why.

I wish I had some real and practical advice.

Don't you dare worry about money. That will work out--believe it. Just keep your beautiful family close and revel in the love and support they (blood-related and otherwise) provide.

When it comes to the decisions you make regarding getting in a better place health-wise, whether it's filing appeals, getting more information and support and/or seeking help, take your next steps one at a time and don't allow yourself to get overwhelmed. It might take a little time to feel like the ball is rolling, but don't dwell on the waiting aspect of it. Just keep a basic list of what you'd like to get done and when, and like the money, it will work itself out and you will feel the progress, which will lift your spirits immensely.

You've got a killer family and spirit: this bullshit can't even come close to stopping you.

INSATIABLE said:

seriously, having to work so hard to even GET CARE is craziness, considering that people who have to do that are ILL

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.