After reading post after post on this board, I have come to a conclusion.
We are too sick to be insured....by anyone..no one will touch us with a ten
foot pole...if there is anything out there that says you have RA, watch out,
your financial security is out the window. But then you go and try to get
basic medical help...and disability...they say....you don't look sick, go
home. When will this devastating disease get the recognition it deserves?
I don't understand. I'm new to RA and I don't have it nearly as bad as
some of you. Mine is considered mild to moderate right now but I am
seropositive so Rheumy doesn't know where it will go. Neither do I. I still
work but have cut down considerably on hours. I'm a pediatric nurse so it
is a bit easier on me but the fact remains, I do not know what tomorrow
brings and I know that all of you can relate to that. I have severe regrets
about going to the doctor and getting a diagnoses placed on my records.
It has basically ruined my future. I am no longer able to get insurance of
any kind. That really sucks. If I would have known this a year ago before
I went to the doctor, I would have told him that I was going to Africa and I
needed Plaquinil to ward off malaria, lol. Just venting tonight. I hope you
are all well and feeling good tonight.
Yup. I'm with ya, Hon.
My first officially diagnosed bout of an autoimmune was Graves disease about 18 years ago, when my kids were very small. Missed a LOT of work during emergency treatment and after, finally ended up going to part time, both to spend more time with my kids AND because I just plain didn't feel well, even after we irradiated my thyroid gland and started me on daily thyroid pills. Then, about 8 years ago, I developed Meniere's disease, which is a disorder of the hearing and balance system. Had to give up doing the medical transcription I'd only recently started doing, after spending a fortune on 2 years worth of training.
At that time, although I'd started my first job at age 13 and had worked either full or part time almost non-stop since (other than 2 maternity leaves, the Graves, and a medically necessary hysterectomy... course, that's another story), I checked my SS statement and found that I was exactly 1/2 a work credit short of qualifying for collecting on all the money I'd paid into the system for the past 30+ years. Yup, 1/2 a credit.
Now, as of last August, I added the diagnosis of RA. AND, it seems that "seb derm" I've had on my scalp my entire life is actually psoriasis, and I also have psoriatic arthritis in addition to the confirmed RA. Yeehaw!
Now I spend my days trying to make quilts and dolls to sell online in between my pain. I can't apply for a job, yet I don't qualify to collect Disability.
I should count my blessings, though. At least my hubby has been employed by the county for the past 16 years, and we do have good insurance. My thyroid, methotrexate, folic acid, Humira injections, Clobex shampoo (for the psoriasis), plus the Zetia for my cholesterol and the depression med., etc. ONLY cost me about 0 a month. Whoopee. Oh, and I am fortunate enough that I did get a handicapped parking permit.
Fall through the cracks? Yep, Honey, I think many of us live down there. Permanently.
When I was shopping for insurance, it was pretty disgusting. The insurance agents are required to pull out this list of illnesses. If you weigh too much, have RA, diabetes....it is a very long list. You cannot get health insurance. Some states have "medically needy" policies that help you get health insurance. I think about a third of them do. That helps some. But you have to show that you've been turned down repeatedly. I'm sure the rules differ, but you get the drift.
So, it isn't just RA, it's any medically expensive disease.
Jodi F, please double-check on your credits. I know people with a lot less years that have enough work credits. Also, if that is the case, how many hours would you have to work to make up that credit? I think this would be worth you checking with a disability lawyer. I've only worked 25 years. That just can't be right. I believe if you go their website at www.ssa.gov it states something different.
Fiona, that's utterly ridiculous. How can you ever pay that? I suppose you'll qualify for some of the patient assistance programs. But it still isn't right. This is what Bush fixed? Hmm.
I agree with Roxy, my heart breaks for everyone. That's what really gets me mad. Because what is happening to me is not a singular event, it is repeated over and over again. It is the status quo.
But what we have to do is keep saying that this isn't right. This is not what we want. We do not lose our voices just because we are sick. You still deserve better than this no matter what they try and make you believe.
We were not meant to live in the cracks. But it will take a lot of people saying that.
isnt an insurnace company denying us for having a pre-existing condition discrimination? I dont get how they can legally do that.As long as medicine is a business (you know make a profit) it has to be this way. I'm in favor of free enterprise mostly but I think it is wrong to buy and sell babies, slavery is wrong too, and I don't think we should be making profits from human misery - that is what the business of medicine does.
We need a non-profit org with mandated contribution by all to take care of us all.
I think American families need this as much if not more than any other program including public schools, military, roads, etc. We can not do without healthcare, food, and shelter.
How do you have freedom from fear without the basic needs safety net?
Still almost all the people I work with think the status quo is the right way because they are well and employed. I guess we are lacking in both compassion and imagination. Three months without a job and something as simple as a broken leg would bankrupt 9 out of 10 of my co-workers. None of these people seem to realise how close to the cliffs edge they are standing. It is a crumbling cliff with the best paying of my companies jobs being shifted to India.
Will we wake up in time to save our way of life? I doubt it. It depresses me."Give
me your tired, your poor, your huddled masses yearning to breathe
free, the wretched refuse of your teeming shore. Send these, the homeless,
tempest-tossed to me. I lift my lamp beside the golden door."
BS! We are the land of opportunity no more!
Our COBRA insurance runs out in June. After that we are going to be without insurance unless a miracle occurs. No insurance company will allow us to buy insurance, notice I said BUY, not GIVE, because they don't want the risk involved with insuring overweight, older (50ish) folks with any health concerns. Nope sorry, we don't have to insure you, so we won't. High risk carriers would cover us, but we would have to take out a third mortgage to pay for that. The COBRA cost is sending us to the land of bill collectors and late payments.
No one will hire my husband for a permanent position which will provide benefits. Believe me, I know, we've been trying since 2002. We got close twice, but the first time the company decided that they were putting a hiring moratorium on for that division of the company, and the second well he made it to being one of the top five potential candidates out of 160, but they hired a younger man. That's twice in 4 years that we even got close.
Fortunately he can work as a self-employed consultant to keep money coming in, but insurance is just not available to us at a price we can afford. Our future is dim too, because we had to use the money in our 401K to support ourselves in 2002, when his permanent job was shipped overseas.
I work part-time and don't qualify for benefits. I've been trying to find a full-time job that I could physically handle, but my options are pretty limited.
I read all of this and it just saddens me. I used to worry about what would happen to those working for the HMOs, insurance and drug companies. But that is like worry about feeding the vultures that are picking at your body. They’ve been feeding off of us. And, the people within these organizations are daily making arbitrary decisions about the health and well-being of people that they will never have to look in the face.
I put this on the RAsushi board. I think it applies here though.
“My Children”
by Deanna Lenard
This is my people I hear crying.
Their sobs bang against my heart
Filling the stillness of the night,
Drowning the day.
So much pain
Hovers everywhere.
My people cry
And comfort lies elsewhere.
It is an empty land
With cold hearts
That turn not to listen,
Sick, old, young, broken.
These are my children,
My neighbor, friend,
The stranger lost in the streets,
The man in the chair.
Who will hear them?
Who will call out their needs?
And turn to comfort?
Who will aid my children?
A step away from nothing,
Left homeless in despair
Because no one heard their pleas,
Instead turned their backs.
This is the land upon which
I was born, raised,
Cultivated and groomed
And now left in disgrace.
Welcome home the soldier
So brave to have lost so much.
And then dump in him in the pile
Of the uncared, undesired.
Turn your back on my old,
Those who built our future.
Every step of every day
Listen to them starve.
Hear the child born
Unwanted because she’s not whole.
God’s bright light
You’d extinguish in the womb.
Crying woman torn way from life.
So vibrant before,
Torn by unrelenting disease,
Abandoned to the tearing winds.
Can’t you hear them any more?
These are my people,
On my land, my soil.
Crying for help.
RKGAL said she could see this as the Statue of Liberty. I wasn't even thinking of it that way when I wrote it. I was thinking on all the people I have met.
Deanna, That really touched my soul.
Your heart is so full and has so much to say.
Hugs and Peace,
Nini
[QUOTE=Fiona] I have insurance, but I still think I pay too much forLorster,
I have always wondered about the problem you are mentioning, re: doctors. I love Marians ideas about Universal Care. Where a fixed amount is taken out of all our paychecks to provide coverage for all (as long as it does not pay for illegal immigrant adults, I think all children should be covered). But as you mentioned will we still have all the specialists we need? I have a friend who is an opthamologist, she has been practising for 15 years and is still paying off student loans. She is by no means getting rich and would probably be better off if she worked for a hospital. But like us, she has health problems and would not be able to handle the kind of schedule a hospital would insist on.
Maybe the answer would be to provide free or really low cost med school to most of the students, but once again, I don't know how much more I can have taken out of my check to pay for things.
I am fortunate enough to have a long-term disability plan. My sister has lupus and when I saw her have to become totally disabled nine years ago at 43 it really scared me. I told my new boss (I was changing jobs at the time, I was 45 yrs old and was not diagnosed until I was 49) that he would have to provide me with a long term disability plan in order for me to take the job. Now as of 1 year ago, I am using my Long Term plan for permanent part-time disablility (at least for now). There is no way I can work more than about 17 to 20 hrs a week and sometimes that is a struggle.
I really hope we can come up with some way to provide better access to health care, it is such a complicated issue, but as someone mentioned, there are enough examples to study, both good and bad, and I think we will be able to come up with something that works, I just hope its soon.
Nina, thanks.
Hillhoney, I have an idea that just might work for you and your husband. You might have already tried this, but if not it is worth a shot. A lot of states now have Group insurance available for companies for 1-2 employees. What you usually have to do is get this through some national association the field in which your husband works. Then you become his employee for both of you to become insured. I think you have to work at least 20-30 hours, but that could be filing, phone calls, whatever you need it to be.
I looked into this possiblity for myself but could not do it with my kids because they just don't have the reliability. But you and your husband might be able to work something out.
Also, once again, check out the "medically needy" programs in your state. The high cost of your medications, tests and doctors might qualify you for a state program especially since you don't work now. These programs sometimes have really low premiums. Even AZ has a program like that. It's called AHCCCS Freedom to Work.
And, if you are self-employed, the state has program for that as well.
See if there is something out there for you.
I can relate to the problem with student loans with the doctors. TheyThen maybe we should revamp the way student loans are done for medical students. I certainly think we should change the malpractice problem.
Think about it if every one did have medical care across the board. Part of many lawsuits is the cost of medical care over a lifetime. That leaves pain and suffering. I think that there should caps on the amount of pain and suffering. Plus, think of this. If lawyers for malpractice were capped at what they got out of a case just as they are for SS, then riduculous claims would not be submitted. The worst thing though is that many of the people who are forced to file malpractice suits get very little of the actual money. It goes to the lawyers. Cap it at 00 for the lawyers and suddenly you'd see a whole different light on the subject.
There are doctors out there that are determined to change the system too. It's become a no win situation for them as well as the patients.
What makes me mad is that there are doctors out there that are truely
I agree that there seems to be no way we can know about the quality of our doctors. Look how different Rheumys treat all of us. There does need to be some way of solving this problem.
Maybe that one of the fears we have in universal healthcare. If the doctors can get away with this now, what happens then. But if Police Departments and Armed Services can have review boards, why not doctors?
I also believe that doctors need to have the same kind of re-certification requirements like we enforce on our teachers.
All three of these areas are among the lowest paid members of our society. Yet lawyers and doctors seem quite protected from this kind of review. Yes, hospitals have review boards, but is there any other kind? I'm not sure.
Oh Deanna, don't get me started on the teacher thing. It's just as bad as the doctor situation, I promise. My mother teaches, and I hear about it every day. LoL
It would seem that our big social services, health care, schools, social security, etc etc NEED to be looked over. None of it works right. I don't know who should pay for the changes though. Lord knows I can't afford any more coming out of my paycheck....
I don't think we need to add more taxes. We need to rethink how we are spending that money. That's the problem. They just add another tax to bandaid some problem. That isn't the answer.
There's a lot of waste in the current processes. It's going to take some courage for someone to stand up and lead in this process.
Hey, it's like when I do my bills. I never have enough to stretch far enough. But if I struggle with it, think about, reprioritize, sacrifice here to achieve something there -- well, it's all a process. In the corporate world, they have something called best practices that huge companies use to save money across the whole company.
You can take the same concept and apply it to social reform. There are some very smart people out there who have come up with some amazing things that are working well in their areas. What we need is leaders who can pull these best ideas out and get them working across the country.
It isn't more taxes that we need, it's more brains working together. For example, some states have good support systems and others don't. Why don't we strive for the best?
But the answer is not more taxes. If you could eliminate all the paperwork that comes with pre-authorizations, how much money would just that one thing eliminate? If we didn't have to pay to support COBRA, then where else could we spend that money. We wouldn't need COBRA because everyone would be covered.
And if we started providing good healthcare across the board, we are going to have healthier citizens. Spend the money up front to keep people well before they might need disability.
People have a great gift for helping themselves if you don't drown them first. That's what has been happening. Your taxed every which way. But really good solutions are not being worked through.
I'd like to see leadership that would work for this. I know, I know it's asking for the impossible. But that's what I want, the impossible.
It is sad. It teachers, firemen and police that do the most serve our country on a daily basis. Teachers hold our biggest national treasure, our children's minds, in their hands.
My mom, grandfather and great-grandfather were all teachers. What we pay them, expect of them is ridculous. This is part of the upside down priorities we seem to have.
Maybe we do need one more tax on two things quite specific, a sport and enterntainment tax on those making over a certain amount a year. Then, throw that into the educational funds and not for sports activities.
We are making a big mistake by not investing in our children (and thus in the teachers) because other countries are.
Truly, I don't understand why they are paid so low. In Phoenix, not the metro, but Phoenix itself, they have a cop/teacher housing program to help compensate for their low wages. They get a discount on their mortgages. That's nice, but it's like a blaring statement of how low their incomes are.
Deanna, thank you for your previous reply about insurance for self-employed. While it is a way to get insurance, as with the high risk insurers we will have to go through the underwriting process to be covered. And since we are considered a risk, the policy they give us will be rated, and be very expensive. I spoke with a representative of the Insurance Department for Connecticut and that is what she told me. While she sympathized with our circumstances, she had nothing else available to help us.The only way I found to deal with this was to get one of those "not really insurance" cards. I used Care Entree. They give you a discount, not much but better than nothing. But the card gets you into doctors, hospitals and pharmacies. That's it's big benefit.
There's a lot of these programs out there and you use them, check them out for the best deal. I did end up with a lot of medical debt. But then I took 7% of it off my taxes when I filed. So, you can recover some of it if the debts are high enough.
It's not a good deal at all. It's survival mode. Costco and some of the other major chains have cheaper meds if you belong. AAA will give 25% discount on prescriptions if you are a member. I think AARP has something as well.
Then, you start applying for all the Patient Assistant programs through your Rheumy. There's also some lists on the web for these programs. Let your docs know that you need the lower cost meds. For instance, I didn't know I could get a generic form of med for my blood pressure med until Mercy Care forced it on me. Well, I would have tried it myself to save the copay with my insurance. So watch for those kinds of things.
Some universities and county health departments can help you get meds at lower costs. You probably are going to have to go down there in person.
This doesn't really help solve the problem at all. It's just ways to cope with it until someday it changes.
Hillhoney, your situation really is impossible. I don't know what to do except to keep speaking out that it isn't right.