What do I do when...

[FeyShadow]

I was diagnosed with a Chiari Malformation, with a 1.2 cm herniation on Jan. 15.  I'd gone to the emergency room (2nd time in a week.  The first time, they kept looking for heart problems) with a severe migraine, muscle weakness (I keep falling over, especially if I stand for a while), severe pain in neck, back, shoulders and chest, and the doctor did a CT Scan, then an MRI both without and then with contrast.  I don't have health insurance like so very many people in this country, and now I can't get a doctor's office to give me an appointment.  I've been told, "it's really too bad, but without insurance we can't do much.  Besides, Chiari Malformations are out of our range.  You have to see a Neuro Surgeon for that."  I can't afford to continue going to the emergency room (at 3,500 per visit!), but I can't live with this pain.  At this point, I don't know what to do.  I don't qualify for Medicaid, but I can't work, so I no longer have an income.  I'm sure this is NOT the best post for a first time post, but I'm totally and completely at my wit's end.  I just want my life back.  Has anyone else had these kind of problems, and if so, what did you do?

[*Stormy*]

We were just talking about the appetitie thing on a different thread just the other day!! Maybe Selma can bump it up....many of us seem to have the apetite problem!!

[selmaS]

I just thought of a way around the pre existing  condition...from teh time I was dx and treated a yr went by....u need to be on a general insurance for a yr with a  pre existing b4 they will pay for treatment....so if u wait a yr ...it took that long to get in to the right drs for me and to have everything scheduled.And many places will allow

Plus, Partners are now being allowed to be on each others insurance if u can show a few things like u share living expenses...and I am sure u did until now...not sure what TX would want as prof  but at least look into it.

[FeyShadow]

I live in SE Texas, and apparently (and this is from the Health and Human Services Commission directly), I don't qualify because I'm 42, with no minor children and am not pregnant.  My son is 18 and away at college, I'm single, and now have no income coming in.  Thankfully, I live with someone who has a decent job, but I can't get on HIS insurance because we're not married and I now have a "pre-existing condition".  Our health care system here *****.  We have Indigent Care, but our county is one of the hardest to get on.  UTMB, in Galveston, usually takes care of folks without insurance.  It's a world-class teaching hospital, but since Hurricane Ike did all the damage over a year ago, they're not taking new patients.  Apparently, they're implementing a new system in which each department will review each potential candidate and accept/deny them themselves, but it's not been implemented as of yet.  It's in the planning stages.  So, yes, I'm a bit frustrated.  I've been shuttled from one place to another to another during the past three weeks, and still not gotten any answers, let alone help!  But enough complaining, lol.  I've gotten a lot of support from the man I live with.  I wake him up all night long when I'm hurting and he doesn't complain.  I've offered to go into the living room on those nights (which are more often than not), but he says no, because this way he knows I'm still okay, even if I am in pain.  How sweet is that?  

I don't dance, but I had been getting ready to start an exercise program/dvd series that I'd bought not long before I was diagnosed.  That's now out of the question, lol.  It was a low-, med-, then high-impact workout.  Quick question:  Did anyone else lose their appetite?  I am finding that I'm just not hungry anymore, and have to force myself to eat anything.  Mind you, I'm WAYYYYY overweight so I can definitely stand to lose some weight, but it's getting ridiculous when about 2 TBSP of food more than fills me up!  I was craving something sweet the other day, but there was nothing in the house.  I decided to bake some brownies, so I did.  When they were done, they "needed" something, so I frosted them with chocolate cream cheese frosting.  After that, I just looked at them (Oh, how pretty!  lol) and realized that I was no longer craving anything sweet.  I ended up giving them to my neighbor.  Goofy, eh?

Scottie

[Spaceystac]

Don't pay your ER bills, It sounds bad but they cant take your life away for not paying for the care they provide. Med bills almost never effect your credit, and If expenses get that accumulated, that is what bankruptcy is for. You cant neglect your self to pay them either, feeding yourself and having a home is WAY more important.  Welcome to the forum FeyShadow, I am fairly new here as well.

[*Stormy*]

I'm sorry you are having such a rough time with insurance...I guess I should be very thankful that in Canada we have MSP. It upsets me to hear that someone in your situation would be denied the care you need, it is just unethical!!!

The realization of the limitations of this condition is upsetting at first, I LOVE to dance and enjoy the girls night out. Everytime I hear music I want to just get up there and boogie but my body doesn't cooperate. However, I think part of getting through this is to find those things we love that we can still do and expand on them. (Even if it means dancing in my head lol), I still love tunes so I just crank them and get a kick out of my kids dancing instead!!

Anyhow, welcome to the forum, this is a great place for information and support. Let us know how it works out for you!

[denverluv]

I am in the same boat except I lost my medicaid a week after a got my diagnosis. My NS appt is not untill next month so I am scrambling to try to get it back. Do you not quailfy because of your SO income? Are you married? If so, you can get insurance through your spouses work, and you can apply for a medicaid supplement - where they will help pay some thinngs. I am not too completely sure on the details but I think it's available. I was working a part time job and dropped it because of the insurance thing. 7.28 an hour for twenty hours a week bumped me over the line. And btw - I don't have an iphone, a prada bag, maddens, or a Cadillac escalde - like everyone else at the food stamp building. Go figure.

[selmaS]

I am tight there with u as another Roller coaster lover : )

I love those shows on TV where they film it so it almost feels like u r on it......aw t just get one more ride...sigh.....oh well, I know that won't happen and it pains me as well...and more so if I were to go on it so, we move forward and learn how to compensate and deal with what we do have : )

Glad to be able to welcome u aboard Scottie : )

[FeyShadow]

Thanks for the welcome.  I really appreciate it!  I probably sounded whiny in my original question which I honestly didn't mean to do.  It's just the frustration with the total lack of compassion one finds when they don't have insurance.  I am not saying that I was expecting free services from the medical profession, either.  I offered to pay for the office visit up front, but was told I was "beyond their area of expertise".  I did apply for SSI, which would then qualify me for Medicaid.  It just takes 3 - 5 months to get an answer.  I am just learning to live with my diagnosis, and so I know I should be more patient, but I just want my life back!  Only thing is, I realize it's never going to be the life I lived before... I'm going to have to make adjustments to the way I live it.  I hate that.  

One of the things that struck me the hardest is the fact that I can never ride a roller coaster again.  Mind you, I haven't ridden one in years, but that option was always there, and I LOVE roller coasters!    How funny is that?  I'm trying to laugh at myself and my fears, to keep a positive outlook.  Today was just a "bad" day.  Thanks again for your welcome to the list.  I honestly DO appreciate it.

Scottie

[selmaS]

Hi and welcome to the Chiari forum.

I totally understand the insurance issues as I just lost my cobra and am trying to figure out how to get coverage I can afford.

Since u do not qualify for Medicaid, did u try SSID?

U asked for what to do and that is the best I can tell u...... knowing ur age I am not sure if u would qualify for nething other than SSID.

We are always happy to welcome another  chiarian into our little family here, but we r not happy for the reason u are able to join.

"selma"