Advice for Better Living Archives

I love y'all's website - it's been helpful *and* comforting.
This may have already been covered - I'm trying to read the archives but I'm not caught up yet.
I have a job I love, but it is becoming more and more difficult for me to get out of bed and go do it.
I've been not paying my bills..... I have the money, it's just that between work, home, and snuggles with Tiki my bird , I have NO energy
left.
I do have a housekeeper twice a week.
I have a large supportive family.
I have dear friends.
I have been going through this crap since I was 26 & I'm 44
My Rheumatologist has already told me that I could go to full disability.
What are the pros and cons of this? I'd have to file bankruptcy, to eliminate my credit card debt at one point I was paying $1200/mo. (cash) for Enbrel
I do sort of own a home - I figure I actually *own* the front porch-
but- it's a 15 year mortgage with a 6.5% fixed rate. I have seven years
to go.
I also own my car free and clear, a sweet running 94 Honda Civic. :)
I'm so fatigued right now, even with all the new drugs including
Remicade that I just want to crawl under the bed covers and hide.
I REALLY don't want to be a burden on my family and friends.
So - what's the deal? Am I depressed? Should I tell my Rheum.?
I really don't want to take another pill.
OTOH - should I go on full disability at the age of 44?????
Any help is welcome,
Smooches,
Laura - who was quite mentally chipper till a few days ago when she had to have her 14 year old central heat and air unit replaced..... with
taxes, 3K.
The next day, my 17 year old Maytag dryer broke. That was fixable, but
the repairman was so proud of what he'd done he wanted me to look.
I stood on a chair, bent forward, then twisted to the left to get a
better view and snapped a rib. It was so loud that the poor repair guy
stayed almost an hour after he had finished and tried to get me to let
him take me to an ER. He certainly was nice, but I declined.

Any advice from those that have been there?

For Laura: You may have disability insurance on your loans; check that
out. You may have disability insurance on your retirement plan. I had
all my credit union loans forgiven when I disability retired, plus I got
my retirement money, and I wrote to all the people owed and explained
the situation. I paid minimum payments until I got Social Security
(which is a lump big payment first), then paid them off with that.
Please consider keeping your home. Repairs are cheaper than
replacement most times. I wish I'd kept my house.
We did not lack for anything for the 5 months waiting for Social
Security to start. They will tell you pretty quickly one way or the
other if you got it. When filling out the forms, give details
graphically. If you cut your hair because you can't reach your head to
style, for example, tell it all.
I now work part time and am allowed to make $780 a month extra which
helps a lot. They will confuse you about working along with a
disability.
Hope this helps! {{{{HUGS}}}} Nanasu

I think this has to be a very personal decision. All of us have different views about disability. If YOU think it will improve YOUR health and well being, go for it. 

If it is going to depress you and drive you crazy, work as long as you possibly can. 

Only you know what is right for you. -DM

Ya, know I hear these stories, and I have to just say, if you need it, it is there for you. At leastyou can get it. I am 28, I have two children, ages 5 and 7, and i have had arthritis since I was 9 years old. It's diagnosis at\ age 9- POLYARTICULAR JUVENILE RHEUMATOID ARTHRITIS. Now, 4 years ago, my arthritis moved to my lung, forcing me this past year to have major lun surgery, spent a month in the hospital, no fun. Doctors won't let me work, and I can't receive disability because I have not been able to work long enough in my lifetime to receive it. SSI is based on my husbands income. He usually makes about $10 more than allowable a month, so I usually do not get it. I can't take the new RA drugs because they could affect my lung. I just have to pray that my enlarged liver doesn't start failing. I would feel blessed if I could receive anything from disability. Even enough to cover all the co-pays on my meds would be fabulous. this is MIDGET, signing off 

And from the original poster:

Thank you all for your input. :)

After much thought - I've decided to keep working until they carry me out in a body bag.

I think the emotional "high" I get from taking care of patients outweighs the physical stuff I have to endure.

Plus, it feels *really* good to know that I'm helping people. Also, I'm more empathetic than most MRI techs, because I already hurt.... Thus, I feel like I can do more good for my patients than a 'normal' tech.

This has been validated by two interesting things.... The VP suit over my dept. sent me a written note complimenting me on my excellent patient care - he named the patient - I had no memory of this person, since I treat all patients at the same level.

Then, my COO, a man whose face I couldn't ID in a lineup <g>, sent me a hand written note through snail mail praising me for my treatment of another patient.

Even my "real" boss <i.e., the chick who approves my vacation time, etc.> was surprised by that one - and the VP above her knew nothing as well.

So - I must be doing something right, and I am paid really well.... I guess I'll work some more. :)

Thanks for all y'all's help,
Laura Rayfield 

 This may be off topic a little. I have arthritis in both hips. I have been on disability from work since 01/29/01. My disability cheque was $413.00 per week for 26 weeks. I now get $2500.00 per month. When I was working I was making $4300.00 per month. I would also get about $10,000.00 in stock every year and a christmas bonus of $4300 every year. I would earn $66000.00 per year. Now I get $30000 a year. I have asked my company to put me in a position I could do until I have my hip replaced. They won't help. I have used up my savings and retirement funds to survive. I have no avenues left. I am behind on all my bills and my credit is suffering. I have talked to everyone i know to see what I can do about this. I didn't think I would have to give up my hoouse and make my family suffer because I have arthritis. I am looking for anyone that may have advice for me.

Funny how the numbers don't make a difference ... when you have to live significantly below what you've been used to, but still have to pay previous bills, it's tough.  My income was around $25000 annually and I'm a single mom to 4 kids, receiving no child support from my ex.  I've been on long term disability since October 2000 and my reduced annual income is only $16000.  I know exactly how you feel and can only say that it helps to let people know you need help; humble pie tastes better now than it used to!  My biggest fear, quite honestly, is that I can expect an end to having 80% of my medication costs covered if I have to stay on disability beyond the 2-year mark.  Managing the 20% cost is within my means; finding an insurer who will offer as good a plan when I have a pre-existing condition isn't going to be easy.  Anyway, as I said, don't be afraid to admit to people that you can't do things you used to, whether it's lunch with friends, letting your kids participate in expensive extra-curricular activities (there are other options), and letting creditors know you're reduced income requires modification to monthly payments.  Above all, don't let people's negative attitudes beat you down ... stick up for yourself; don't let them walk all over you.  After all, the one luxury you do have right now is TIME to write letters, make calls, etc.!-PK

Wow, that's tough. Who can help?

Has anyone become pregnant successfully with severe RA? And how to dr.'s deal with it? And what medications do they put you on?

I don't believe my RA can be termed as severe. I was in remission prior to my pregnancy so I was on no meds for RA. I do have severe fibromyalgia and was treating that. I noticed no RA symptoms at all during my pregnancy but an increase in fibro symptoms. After labor (approx 4 weeks) I began to flare horribly and am still trying to get it under control. I do know that should I decide to become pregnant again, I will ask to do the pred treatment during pregnancy and will ask for a steriod push while in the hospital. -Wayney

hey, I became pregnant twice with RA--and I have had RA since I was 9. I am 28 now, with a 5 and 7 year old. I was put on steroids when I was pregnant with the first--there is a less than 1 percent chance that the baby could get harelip and cleft pallet in the first trimester with steroids. How did I avoid that? Good Question. I suffered through the first 3 months, then took the steroids when I knew it was safe for my baby.my boy is healthy and happy. He was also very strong when he was born, which was to my benefit-he could hold his head up at birth, and there was no floppiness about him. That helped me in being able to handle him. My second child, my husbands family was too nervous and insisted I use no meds. BIG MISTAKE. I hurt so bad through me entire pregnancy, and 6 weeks after delivery WHAM! I woke one day and couldn't move, let alone take care of a baby. I would definitely recommend the prednisone for a severe rheumatic mom!  -TC

I'm not sure if this will help, but I will give some of the information that was given to me by my doctor when I was trying to get pregnant, and once I became pregnant. I started trying to concieve when I was about 24 years old. I had been diagnosed with RA when I was 26, and had been on Plaquenil with great success, but felt I had to stop trying to get pregnant while taking it because of possible effects it could have on the baby if I did get pregnant. So I stopped the Plaquenil and basically was being treated with NSAID's (Motrin,etc.)and was on Prednisone as needed for really bad flares. I did manage to become pregnant in early 1994, and during my pregnancy was on a very low dose of Prednisone(5 mg. per day) throughout the entire pregnancy. My daughter was born 5 weeks premature but was 6lbs and 1 oz. and did very well. She is now 7 years old and thriving. I had a miscarriage in 1995 and then concieved again in 1996, this time carrying my son to term, also on the same low dose of Prednisone. He was 6lbs 11 oz at birth. He is now 5 and also very healthy. Both pregnancies were difficult because of the pain from my arthritis(I'm not sure if the low dose of Pred. may have just taken the "edge" off of my inflammation)and not being able to take anything stronger than Tylenol-to me I may as well drink a glass of WATER, Tylenol was always worthless and still is! I was told by my OB-GYN's both pregnancies that most women(I was told about 70%) get relief from their arthritis during their pregnancy, but I was one that had no relief whatsoever. Also, within a few days after delivery(both times)I had a rather bad flare-up of my disease, and the doctors tried to head it off by giving me I.V. steroids while I was still in the hospital. This did not do much for me, and I wanted to attempt to breastfeed, so I basically just took alot of HOT baths and showers postpartum. After about 4 weeks of breastfeeding, I felt I could not continue, because I felt that my pain level was interfering with my ability to take care of my child, so I stopped the breastfeeding and went back on steroids for about a week(tapering dose) and then I could get back into anti-arthritic medications, and be able to get pain medication if necessary. I am now 42 years old and even though I would love to have another child, I am not, simply because I feel that I cannot physically handle another pregnancy because of my arthritis. Now I am seeing a Rheumatologist and have begun taking Azulfidine to see if it will help. I am currently on Depo injections for birth control. If I can answer any questions or go into any more details, please contact me. Don't get me wrong, even though the pregnancies were difficult, they were both worth every single second!! If I had to do it over again, I definitely would! Thank you, -Marty Smith

I'm not sure how much help this will be for you. I have had severe RA for 2 years now, along with lupus. My daughter was born in January this year, the induced her because of health problems. I was listed as a high risk pregnancy, more from the lupus then the RA. My arthritis seemed to go in a remission period during the pregnancy. My dr told me though that RA will get better in pregnancy. I was still sore, etc in the mornings, but it was alot better. Three days after my daughter was born however, it came back full force and worsens daily.

During the pregnancy they wanted me to be on steroids, I didn't do that though. Talk to your OB and let them know about RA or other conditions.. they might feel better if you are with a high risk dr. I was told my daughter had a chance of being born with congenitive heart failure and would need a surgery very young. I was very relieved that she was born healthy even though early. If any other mom's out there have advice on baby care please let me know. My daughter and I make a camp on the floor and go from there. Hope this helps some. -- Dawn 

Moms? Can you help?

I read the articles last week by a "newbie" who hasn't found a diagnosis yet and by Kiki who explained her diagnosis of seronegative rheumatism.
Two different rheumatologists have diagnoses me as having seronegative rheumatism (in addition to my severe fibromyalgia), but neither one suggested treating me for it. Is this normal?
Can't this kind of rheumatism be treated before it becomes seropositive?
I'm really confused and would appreciate any information from others who are seronegative.
Thanks so much - Joanie

I was diagnosed with sero-negative RA i June of '01.  My rheumatologist started me on Celebrex, then plaquinel, and now 6 methorexate pills a week.  Things aren't perfect, but they are better! -Ron C

Complained for 2+ years to GP of foot pain and swelling, hand, finger
and wrist pain and swelling, but because all blood work and x-rays were
negative, she was telling me it was probably Fibromyalgia. Finally,
after not being able to walk without horrible pain, was referred to
rheumatologist. She was a little stumped for a few visits and only
after a nuclear bone scan in Oct of 1998 did it reveal I had sero
negative RA. I have been on Piroxicam (Feldene), Prednisone, and since 1998 on Methotrexate (injectable and pills). I was able to kick the Piroxicam to only when needed, and only did short stints on the Prednisone. I am only on Methotrexate and so far it has been working. I hope it continues to do so. I certainly am not like I was before the RA, but I definitely am not like I was in the beginning. I do have erosions that probably came on in the years I was not treated. Early treatment with DMARDs is the key. The defining test for me was the Nuclear Bone Scan, since all my other tests were negative. If anyone finds themselves in this situation, suggest a nuclear bone scan to your Doc.-- Julia A.

I have had seronegative arthritis for about 10 years and right now I'm taken Plaquenil twice a day and gold injections (myochrysine) every second week. I feel pretty good, all in all. This concoction seems to be the best so far. The main problem here in Manitoba is a shortage of rheumatologists. Mine left the country a few months ago and 4 or 5 others have left in the last couple of years, leaving a waiting list to see someone over 1 year long. I'm not too worried, because I am well controlled, but I am concerned about people who are suffering without any treatment and those who are diagnosed but need to see someone ASAP. -LF

Ok...Sero Negative People-How are you being treated?

I think it would be cool to talk about how do we overcome our self body image problems maybe because of arthritis issues. I think we tend to think we look more deformed then we really are. I myself go through moment's of it.

Good idea! Let's Talk!

Self-image is a huge battle for me. I know it stems from my problems as a kid with others believing I was faking to get attention and then finally seeing what was there to see physically. I limped but not badly...but I think I put more emphasis on it in my mind than anyone did. Now, I just struggle with feeling attractive to my hubby because of the funky fingers and toes. And strange ways I do things. I tend to look awkward. He's the reason though I don't feel horribly hideous. H constantly tells me how he feels about my look and how my hands and awkwardness do not matter to him and if it doesn't matter to him, I shouldn't care. Then he points out things like other men looking at me in that 'guy' way. -Wayney