Struggle

A Friend in Need

I have a friend, bluefenox, a.k.a. Bella (not her real name), with Crohn's disease. For some people, the disease is mild. For her, it's been quite severe. I've known Bella for quite some time and it's heartbreaking to see her trying to get out and socialize. She's in constant pain and often can't move because of it. Of course, that's what 15 surgeries will do to you. Her abdomen is pretty much a mass of scar tissue.

Naturally, she's on some pretty heavy pain medication, can't work, and is in and out of hospitals. However, she doesn't have medical insurance. You know how it is in the US. If you don't have medical insurance, they really don't care. One of her "favorite" hospital incidents involved not being able to take the pain and the hospital reassuring her that it was only a small cyst on her ovary.

Bella doesn't have ovaries any more. Those were removed a long time ago.

This happens to her all the time. Doctors casually misdiagnose her. Why should they bother to really find out what's wrong? She can't pay for the medical tests. Now when she gets another surgery, doctors are having trouble working around all of the scar tissue. The state of Oregon, however, has ruled that she is not disabled. She can't work. Her boyfriend can barely afford the bills and they're living on food stamps. It goes without saying that Bella can't pay her medical bills.

There's a MySpace group set up to collect donations for her. If you are willing to help, please do so. Otherwise, even offering her words of support would be nice. You can also read her side of the story, if you like.

  • Current Mood: worried worried
It's a crying shame, especially how we define 'disability'. I'm part of a group of people with what we call 'hidden diseases' or 'hidden disabilities'. People reject that you need any special considerations because you aren't bed-ridden, wheelchair bound, missing a limb, etc. If it is on the inside, it doesn't seem to count.

I have a good friend who has battled Crohn's as long as I've known him, and it is also pretty severe. He just had another surgery last month to remove yet another section of his bowels. He made the decision that he doesn't want to go on through things like this much longer, put together a DNR and also said he will not agree to a C-bag. I read your friend's story and my heart breaks that she gets treated like that.

Has she considered, even though it would be a stretch financially, about moving to a place with a better charity insurance system and hospital?
And which country would that be?

For most countries she would need a work-permit or proof of a waiting job before being granted residence, and thereby also access to non-emergency care.

Dropped off a few $ on PayPal, and will try to remember donating every now and then when I have a bit to spare.
Here in the United States. For example, in New Orleans, we had Charity Hospital. Here in Dallas, TX, we have Parkland.

Someone we know that is here illegally from Mexico gets her care there, even through the birth of two children.

My father-in-law was displaced by Katrina, but the Veteran's Adminitration was jerking him around on a surgery he needed for cancer. I called Parkland and asked if he could get free coverage there if he was staying with us. They have a program where he could and would get his surgery immediately.
my upstairs neighbor has crohn's and he is the same way he has had so many treatments for it it took years for them jsut to diagnose it....he has had chemo and radiation and so many experimental drug treatments....he was forced to quit his job and now works a lower paying job that more forgiving of his illness but it makes it impossible to pay for his medications...sighs this is a awful disease
</i>The state of Oregon, however, has ruled that she is not disabled.</i>

This bugs the crap out of me. The whole disability benefits system is IMO set up to make it extra-hard for someone who's truly disabled to get the benefits they need. What is this business with "if you've worked within the past year (or however long it is), you are therefore not disabled, even if you *lost your job* due to your disability." (And yes, this is almost a direct quote of what the caseworker told my ex.) :P It's like they expect you to be independently wealthy enough to just not work for a period of time to prove that you can't. Gah!!!
Thanks you!;)
As far as the disability thing goes there is a lot behind that now to make sure you never get it.. I had a friend that worked just getting the claims started. She quit fast. She had to hear the people crying over the phone that had ONE LIMB and still was not considered disabled. She had to file away claims for people who died homeless on and the streets before they even could to go court to fight them.

The way the system goes now most die before getting it. Not all of us have family to lean on. They just die, that is part of the set up. I have fought for years (since I was 17 to get disability now I am 33) I will have been fighting for 4yrs (this time around) by the time it goes to court.

I now have had 15 major surgeries. I have no large bowel and am missing 4ft of my small, no ovaries no uterus. I have Endo, Corhn's and they think now..FIBRO AND LUPUS. The state insurance has refused to cover me to see my specialists. I have been in massive pain for going on three years now this time around. I have a large abscess in my left lower quadrant; it's not large enough to be "fatal" so they refuse to cover the surgery. It has how ever caused a complete kidney obstruction and they moved my uritor around the abscess rather then removing it. I now have a 50/50 chance of even waking up from surgeries. I was told I need a specialist from OHSU to do this one. My doctors and surgeons wrote the state personally begging them to do something and not leave me like this. It's inhume, it's unethical. They told them all they will not budge until it's life threatening.

They also have refused to let me get a second opinion on the firbo and Lupus, they won't let me go to a pain clinic to try to find ways of dealing with the pain with out narcotics.
My doctor's nurse told me last week," I don't know why you bother coming in. You stress Doctor out because he can't help you, you know he can't do any thing so why do you keep coming?"
I hadn't been there in two months; he gives me antibiotics for every thing and sends me home, while trying to make me take three doses of methadone each day. The first thing he asked when he put me on these was "are you hallucinating yet? I panicked he said it's common for people to hallucinate on this stuff. It's almost impossible to get off of because of physical addiction. If I do I will just be left in pain. As it is now I am covered in a red spotty rash (my naturopathic doc took one look and said," ohh god they have you on methadone..don't they?") The pain meds are poisoning me. My liver is hardly working at all, my memory is gone I was getting to where I couldn't remember words and would break down in tears because I couldn't remember them at all. I was getting to where I couldn't tell what I had really done or what I had dreamed. I asked him to get me off them and try something else. He won't do it. He said my liver is failing and I can't take any other meds. I have started tapering my self off of them. I know I will be right back in massive pain but better to have that then my memory erased.

It is now the same with dental. I had two fillings fall out a two years ago. I haven't worked in that time. It used to be that they would fill your teeth if they were hurting you now they just pull them out. It's not just my vanity that won't allow them to take the two teeth. I am of course high risk for extractions due to the roots being clear into my sinuses. One tooth shattered finally a couple weeks ago. They did a "step one root canal" basicly drilled for hours then put what feels like plaster cast material on the tooth . I then have to come up with $1,000 to have it finished. They won't even look at the other one that is that bad. I am someone who has taken care of my teeth for years… since I was a kid. I wanted to have my own teeth when I got old. Don’t disabled people deserve to have their teeth too? Can you imagine a crohn's patient who can hardly chew the food they all ready can hardly digest? It's bad. I will go back to my little corner now that I have written a book lol ;)
I read your postings on myspace (linked from the OP). My ex-husband went through a small fraction of what you're dealing with and it was hell on earth. I can't even imagine what it's like for you. I'm sorry you're in so much pain.