New here-need some help

iVillage Member
Registered: 08-14-2005
New here-need some help
15
Mon, 08-15-2005 - 10:01am

Hi,

I was originally diagnosed with JRA 9 years ago, treated and in remission for 7 years. A few months ago it flared up in my knee again. Thank God it has stayed in my knee, as I'm a violinist and it has never affected my hands or arms. Anyway, I don't have health insurance until I start doctoral school in a couple weeks. I did see a doctor in the town we just moved from, and am still unable to pay the bills. That visit, which included a cortizone shot, draining the fluid, and analyzing it (not infected), made things better for a couple of weeks. I didn't have the rheumatologist prescribe anything because I lacked insurance to pay for medicine. Just took ibuprofen, and iced it. For the past two months, my knee has been swollen and I'm hobbling around. I take 3 ibuprofen 4 times a day, which helps with the pain, but I still limp all the time. Just wondering if trying to walk on it will make it worse, and how much damage may have been done to the joint since I haven't been able to see a doctor? Anyone have any other suggestions on what I can do?

Also, I recently got married-and this should be one of the best times of my life. The RA has made me feel so confined-what kinds of exercises, or activities can I do?? I dont' have access to a pool for another couple of weeks...We just moved to a new area and don't know many people yet.

My husband has been wonderful, and I do have an uncle who has RA, and my MOm has lupus. So some people in my life can understand. But they have insurance, and are being treated.

I'm sorry I have to meet all of you in such a frustrated state of mind-I just want to go back to being who I am when RA doesn't suck the life out of me. I'm 25, and I feel like I'm 80! Any suggestions for how to lift my spirits and how to cope would help greatly. Thanks so much. -Eileen

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iVillage Member
Registered: 03-25-2003
Mon, 08-15-2005 - 1:07pm

Welcome!
I am so sorry about your pain and your lack of insurance. Can't you be covered by a plan through your husband's job? If not, talk to your dr. My mom was able to get medications donated to her. Most (maybe all) of the pharmaceutical companies have programs like that. It's very important to treat this disease. Stick around here, great bunch of ladies!

Michele in NJ

iVillage Member
Registered: 11-03-2003
Mon, 08-15-2005 - 1:33pm

Hi

Molly

iVillage Member
Registered: 05-01-2005
Mon, 08-15-2005 - 3:11pm

Hi Eileen, welcome to the RA board. I am sorry your RA is becoming active again. You really need to be seen by a Rheumatologist. I would try calling one and see if they know of any services that will help you with payment. Is there a local chapter of an arthritis organization in your area? I agree with Molly, you do need treatment. Maybe a low dose of prednisone (which is fairly inexpensive) would hold you for a few weeks till you can get insurance. This is only a suggestion, as I am not a doctor.

I hope to learn more about you. What are you studying?

Sending you gentle hugs, healing vibes, and positive energy,
Vicki

iVillage Member
Registered: 04-08-2004
Mon, 08-15-2005 - 3:19pm

Hi, Eileen. Glad you joined us. When RA first struck me, it decided to attack my knees very aggressively. Let me tell you--I feel for you. No one realizes how much we use our knees until they hurt. You'll probably hate the idea, but I found that a cane helped ever so much. Even if you don't use it where anyone can see you--just around the house--it takes a lot of pressure off the knee. Hold it in the hand on the opposite side of your body from the bad knee and put the cane forward when you step forward with your bad leg. As for treatment, follow Molly's advice and see a doctor as soon as you can. Early treatment is so important for preventing joint destruction. RA does not have to be the terribly disabling disease it was even 9 years ago. There's no cure, but there are effective treatments.

If you do not obtain insurance soon, look around for some options. Does the school you are going to have a medical school? Most pharmaceutical companies have programs to provide drugs to those who cannot afford them. Your doctor can help you with that, or you can try the company's website for information on its program.

Psychologically, dealing with any chronic disease is difficult. RA is no different--it changes your life, and some of the changes are not those we would choose to make. Do listen to your body. If something makes you hurt badly or feel worse, you probably should not do it. You will develop things you can do--no hike in the mountains today; try a movie instead--the mountains will be there next week.

And, if those pesky knees don't behave themselves down the line sometime, get some new ones like I did. It's amazing how far they have come with joint replacement surgery.

Yes, RA is a nasty disease, but all is not lost. I've said it before, and I'll say it again--I have RA; it does not have me.

Rosemary

iVillage Member
Registered: 08-14-2005
Mon, 08-15-2005 - 4:29pm

Hi Vicki, Thanks for your response. It's nice to hear from someone who understands. There probably is an arthritis chapter somewhere near here. I'll look into that soon.

I'll be doing a Doctorate of Musical Arts in violin.

I was prescribed a low dose of prednisone in the beginning of the summer, for about a month before we moved. It didn't do much at all for me. My knee didn't get any more swollen, but otherwise it didn't help. Is it possible for pills to make the swelling go down, or do I always have to have it drained by a needle? I have a dire fear of needles-had a bad reaction last time at the DR, probably just due to psychological things. It's not possible for me to get prescriptions until I have a doctor here. Most likely I'll have to go to a GP and get a referal to a rheumatologist. Even more waiting. I will definitely have insurance when school starts in two weeks, as I'm viewed as being faculty/staff. I haven't been insured for three years. My husband is between jobs, so I can't obtain insurance through him yet.

Thanks again!
Eileen

iVillage Member
Registered: 08-14-2005
Mon, 08-15-2005 - 4:37pm

Thanks, Rosemary. Yeah, you're right, I do hate the idea of a cane, but thanks for the tips on how to use one. Is it really bad to walk on the knee if it doesn't hurt? I'm lucky that I don't feel a lot of pain, it just feels awkward, and unstable. I was on crutches a while ago, but it hasn't been that bad lately. Just haven't been going out a lot. I will definitely have insurance soon, and plan on going to a DR as soon as I can. Do most plans cover all of the drugs and treatments you have needed? How do you keep active during a flare up? All I feel like I can do is sit around the house, or just a short walk around a store when necessary.

:) Eileen

iVillage Member
Registered: 03-25-2003
Mon, 08-15-2005 - 8:09pm
A little of topic, but I really am interested to know how you health system works, and the cost of insurance, and how you health insurance companies work. Lell
iVillage Member
Registered: 04-08-2004
Tue, 08-16-2005 - 11:06am

NO, Lell, you don't want to know how our insurance system works. In fact, it doesn't work much of the time. The premiums if you and/or your spouse are not employed and you have to buy an individual health insurance policy, unless you are very wealthy, you probably cannot afford it. And, if you have any pre-existing conditions, forget obtaining individual private insurance. Some states have an insurance "pool" for otherwise uninsurable people, but, again, the cost is outrageous. I looked into insuring my healthy 60 yr old husband, and the monthly premiums for a fairly high deductible policy were about $700 a month. For those who are "poor" (which might as well read destitute--as you must be to be eligible), there is "Medicaid." Each state has its own program, and medical care will be provided free of charge if you are eligible. Then, we have "Medicare" for those over 65 (a part of our Social Security system). Everyone 65 or over or who is eligible for Social Security disability is covered, but the plan doesn't come close to covering normal medical costs, so everyone must buy a "supplemental" plan or be covered by an "HMO"--Health Maintenance Organization. The majority of people who have health insurance are covered by group insurance through their employers. The employer arranges for a policy to cover the group so the risk is spread over a number of people. That brings the premiums down. Most employers pay a portion of the premium as a "fringe benefit." How much they pay depends on the individual employer. Also, the quality of the coverage differs greatly from employer to employer. Some small employers simply cannot obtain coverage or afford the premiums so, even if people work, they often cannot obtain insurance through their employer or, if they can, they cannot afford their share of the premiums. And, since they work, they have some income and are not eligible for Medicaid. Vicious circle, huh?

So, are you confused yet? In short, our insurance and health care system are a mess. Doctors spend a great deal of time and have to have special employees within their offices just to deal with the insurance companies--each of which has different rules and regulations. Of course, the cost of the doctor's services goes up to cover that. Insurance companies enter into contracts with doctors and hospitals and agree to pay them "$X" for a specific service. This amount is usually much less than a person without insurance has to pay. For instance, my hospital bill for my last knee replacement was almost $40,000. If I had not had insurance, that is what I would have had to pay. Guess how much my insurance company paid to settle the bill? $6,500. Fair that a poor person who could not afford insurance would have to pay $33,500 more than my rich insurance company? No way. Of course, the $6,500 probably barely covered (if that) the hospital's costs, so they have to charge more for other services to make up the difference--hence the $1,000 emergency room charges for three stitches in a finger.

OK--I'd better get off my soap box and try to reduce my blood pressure.

Personally, my husband and I are insured through my employer. I am very lucky because my employer has a great health insurance plan. The company is "self-insured" meaning that it pays all the medical bills up to a certain point and then an insurance company takes over if the company reaches that point. I pay nothing for my coverage, but I have to pay $350 a month to cover my husband (half of what an individual policy would cost and better coverage). I pay $15.00 to see a general practice doctor (or a OBGYN or pediatrician), $25.00 for a specialist, $5.00 for a monthly supply of each generic drug, $20.00 for a name brand drug if it is on a list of approved drugs (meaning that it is impossible to buy a generic version), and $50.00 for a drug for which there is a generic version but I choose the brand name. If I end up in the hospital, I have to pay a $350.00 deductible. After that, the insurance covers everything. There are all kinds of if, ands, and buts in the coverage, but it is much better than lots of plans. My husband has identical coverage.

I am quite sure that I have forgotten something--but you get the general idea. Someday the whole "system" will collapse from its own weight and we will have to get off our duffs and do something to fix it. Unfortunately, so many special interest groups, businesses, etc. have a vested interest in the current system and the money to influence our politicians to keep the status quo.

Sorry for the book, but you really hit one of my sore spots. OK, time to take a tranquilizer and get to work.

Rosemary

iVillage Member
Registered: 11-03-2003
Tue, 08-16-2005 - 1:47pm

Rosemary, everything you wrote about our healthcare system is right on!

Molly

iVillage Member
Registered: 05-01-2005
Tue, 08-16-2005 - 3:49pm

My insurance horror story.

My dh changed jobs and left us without group health insurance. This was in 1996, prior to RA, FM, OA. I had been treated for bursitis in my right shoulder and I was denied coverage. I was shocked, I felt perfectly fine. I stopped my Relafen and did not see a doctor for a year about my shoulder. Blue Cross then accepted me, but on a level 2, meaning they pay 70% of the allowed amount on everything. I do have a $500 deductible and a $250 deductible on name brand prescriptions. $10 for generic and of course they have to be on the list of their "formulary" drugs or you have to jump through hoops to get them to pay. Prevacid is not on their list, so I stopped it, because I was sick of the "jumping" every darn year!! My monthly health insurance payment is $530! Now, my husband was approved right away and is on Blue Shield, which in Calif. are separate companies. He has a $2000 deductible, with a $45 co-pay, rxs are $10 for generic and he pays 20% on brand names. We pay $1000.00 a month on health insurance. We are having a tough time paying all the medical/insurance bills. Every year the insurance companies bump the bill up and the coverage down with more restrictions. I agree with the others, something needs to change. We have tried to find another way to get coverage, like add Jim to mine, but it doesn't make since $$$ wise. AAACCCKKK!!!

Vicki

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