Discussion in 'Fibromyalgia Main Forum' started by Didoe, Nov 20, 2009.

  1. Didoe

    Didoe New Member

    It's been so long since I've posted thank you if you've stopped by to read.

    I've been treated since '06 by a rhuematologist, she has focused primarily on rhuematoid arthritis, sent me for neuro tests to determine fibro status and it was diagnosed as severe.

    with all the meds, trying one after another, I just get weaker and more exhausted. Employer allowed a half arsed job accomodation which I said after 12 months, thanks but no thanks because the isolation and nastiness was more than I could handle. My own landlord today told me I look exhausted, whats up--my employer could care less if we, not just me, if any of us drop dead from long hours that include evenings and weekends.

    I'll be 58 this year-I want to hang in and try to retire with maximum soscial security. But I found out this year that if I get disability now, it would actually be more MORE than if I retired at age 62. Unless a miracle in medicine occurs between now and minimum retirement age, I will never make it to 67 to collect full benefits-I cant make it thru a five day week without extra pain meds and complete lockdown in my apt on weekend. I actually schedule everything for work and home to get done in 5 days because I need to rest up for the next 5 days!
    I used to get up at 5am on Sat to make it to laudromat by 7am so I could get in first and only spend 2 hours instead of 3 or more waiting for machines.-I've been washing at home by hand as means of avoiding dragging bags of laundry and trying to rest-its like putting a finger in another hole in the dam as the water continues to find another hole to pour from.

    Its like being pulled in 2 directions, stay, retire...
  2. quanked

    quanked Member

    I remember seeing your name on the board. Welcome back.

    Sorry to hear of your worsening medical issues. I cannot imagine having to go out to do the laundry. It is too bad the system we live in does not create a way to support individuals who need extra help to continue working. It seems to me that it could be a win/win arrangement.

    I have heard that if someone ends up on disability before becoming eligible for social security that the monthly payments are more. Do you know why that is?

    My husband had a flare up of his infectious cellulitis today. It is his third bout in less than 18 months. I think he may file for disability.

    It seems too strange to me that he and I both now have infectious diseases that will never go away. I remember when I read on CFIDS years ago. The literature said that it was not curable and not progressive but at the same time there were a few people who claimed to have recovered. The info back then said that it was not terminal either. It seems like the information was wrong--except the curable part.

    Your bio stuff said that you are writer--have you thought of leaving work now (apply for disability) and maybe work some on your own with your writing skills? I see all kinds of needs for books to be written about CFIDS--ones that can be understood by those who have mind fog.

    I wish you the best outcome.
  3. Debra49659

    Debra49659 New Member

    It has been a while but I'm glad to see you back. My employers were so terrible to me when I became ill (wasn't even dx yet), they fired me after my 12 weeks of FMLA were up. You deserve a medal for the schedule you keep...I can't even imagine.

    One day at a time though, you will make the right decision when you are ready.

    Gentle Hugs (((((Didoe)))))!
  4. FibroFay

    FibroFay New Member

    I remember you also. Good to see you again, but sorry to hear how you are struggling so. I retired at 62 yrs. It was a relief to give up the fight. I now cannot believe all I was doing in a day's time before I gave up and rested. You know what you need to do. We are all on your side and pulling for you. God bless you, Dear One.

  5. Didoe

    Didoe New Member

    thank you for the kind words and warm greetings, I've been moaning and groaning for at least the past year on the depression board, so my guilt is worsened with your welcome back;-( Not gone but distracted!
    On November 20 the NYTimes ran a great article on RA, The Different Faces of RA. I know there are times my doc must get really frustrated because she treats me for RA with a severe flip side of FM always in the background.

    I want to share something ridiculous but goes to show that doctors only half listen to us. I mentioned in almost every viist the unremitting pain in hips and back-this being so common, I guess she just chalked it up to the symptoms I deal with. I said a couple of times I knew I was draggin one leg, it felt as if one leg was longer, I know my gait is lopsided (I sound gorgeous dont I LOL) becuase every doc who's asked me to walk 6 ft mention it immediately.

    It became so bad that in the last few months I can barely make it up a flight of steps, and that is not good in NYC with crowds behind you wants to catch a train, you move or get moved. Even those horrid ortho shoes I have to wear began to fail me.

    The thought suddenly was very elementary, if one leg is or seems shorter, than the only choice is the lengthen the other leg. I began adding 1/2 " inserts, old shoe inserts from pairs I didnt use, hard foam and cork until I found I could stand up straight, my gait was less side to side-this was in a matter of days. The pressure off the longer leg was immiedate and my back pain greatly relieved. After a week or so with these mostly thin shoe liners, they were not created for the purpose I'm using them for, the symptoms are returning. I need something built for this purpose than wont flatten under body weight and daily walking.

    and even with lengthening my leg, I would prefer to retire LOL
  6. mbofov

    mbofov Active Member

    Your post about one leg being longer than the other rang a bell. I've been seeing a chiropractor who specializes in upper cervical work (the top vertebrae, the atlas on which the brain sits). He adjusted my atlas vertebrae about 2 months ago. He did a lot of measurements and x-rays before doing it, and one of my legs was longer, all sorts of things were out of alignment (one shoulder lower than the other, everything misaligned)

    He recently remeasured things and everything is moving back into place. I really wouldn't count on your regular doctor to do anything about your shorter leg, and I think it would be a good idea for you to see a good chiropractor for this. I've seen regularl chiropractors in the past who helped with low back pain, but the upper cervical work is different. If the top vertebrae is out of alignment, it affects everything, posture, just everything. YOur body will get all out of alignment if it starts at the top. A good website to learn more is upcspine.com, or google upper cervical. Also, if the atlas is out of alignment, it will impinge on nerves which run throughout the body, potentially contrbuting to all sorts of health problems.

    Also, sounds like you maybe really should seriously consider retiring. It's hard to get well if you keep pushing yourself. Actually, I think it's impossible. If financially you're better off to retire now with disability, I think it's a no-brainer.

    Take care,

  7. TigerLilea

    TigerLilea Active Member

    Hi Didoe - I have a friend with one leg 1/2" longer than the other. She had an orthotic insert custom made to fit inside her shoe. Your doctor should be able to refer you to someone to have one made. They cost a few hundred dollars, however, it sounds like in your case it would be money well spent.
  8. quanked

    quanked Member

    you might want to consider trying to get a measurement of how much longer one leg is than the other and get yourself an insert that makes up the difference first.

    Many years ago and chiro gave me a 1/4 inch insert for the same issue. It worked fine and it cost next to nothing. If time and effort is an issue for you then trying something simple migh be worth it--especially if it works out. I have an special orthotics made for me and it takes a lot of time, effort and money.

    There are catalogs I recieve in the mail that sell a wide variety of items for people who have feet problems from shoes to little toe things. I imagine one can find this stuff online.

    Oh, and don't feel guilty please--you have not done anything wrong. Your just trying to make it through just like the rest of us.
  9. Didoe

    Didoe New Member

    2 decades ago a work accident earned me 2 bulging discs, a chiro 'fixed' my lower back, I think-standing straight was possible again so I returned to work. But after decades of being told my chronic pain was just stress, my bones have lost alot of calcium and I now have osteoporosis while the Fibro and RA are percolating. I can tell you this combination makes exercising as well as errands etc very difficult.

    I'd like to say this just once, its pretty much a useless statement, but a needed dump.

    I only found out my feet were flat a year ago. Can you imagine? A physio therapist pointed it out as a reason I should not be doing certain exercises.
    I felt like a 3 yr old moron for not even knowing this and I try to stay on top of my medical issues.

    What ticked me off is, I understood in hindsight they've always been flat! the problems I've had with shoes, walking, pain started in childhood. This relatively minor issue effected going to gym class, taking forced ballet classes (oh, dont assskkkk) but ignored by parent. I guess one's learns or doesnt learn parenting from the way a person is raised...or maybe some women are just not meant to mother.

    I've been considering disability for 2 years, at least, and giving folks here an all around headache with my fears. My employer once again changed LTD provider, we're self insured. I can see it would be better for my department if I was alllowed to retire-there are events they actually dont want to attend, I need a cane and cannot stand for long periods. Last year my boss decided to just pretend I was fine at an evening event without seating. No air conditioning late May, no seating, I'm leaning against a wall with my cane and a guest, a man in his late 70s came to offer me a glass of water and to find me a seat. Not my boss. What joy is there for them or me to have someone like that? They must see my medical bills because they have to pay thousands for what I take, so they know I'm not scamming them...

    I'm going to see if there is someone else at work on LTD who can tell me how difficult the process was-I know my docs are all for me retiring so the only thing holding me back is whether there is a long period of no income, I couldnt survive that. I can live on canned beans but the rent has to be paid.
  10. therealmadscientist

    therealmadscientist New Member

    I was just looking around to see where you were, and boo and bootwo, and found your post here. Glad you are still around:)

    A few months ago, I started to have some left hip/leg pain. Getting better now after seeing a therapist for a couple of visits, and looking at my old shoes (all bought at thrift stores).....both heels were worn on the right side. Anyway, an arch support, and walking "normally" so that heel wear is even, seems to be working. Small things, like changing shoes every day also.

    At a thrift store, I bought a Dr Scholl's foot fibrator for $5......most thrift stores seem to have them. Applied occasionally to the hip/leg seems loosen everything up and make feel better. Electric blanket heat helps also. Cheers, your mr bill.
    [This Message was Edited on 11/27/2009]
  11. therealmadscientist

    therealmadscientist New Member

    That realized that i spent a lot of time propped up on my left elbow on a hard sofa, and that could be related to pain. Anyway, I have cut way down on cigarettes (Chantix). ..... I would always prop myself up when smoking so would fall if I feel alseep.

    Also, I ordered, at discount, a memory foam pad for sofa, and bed, and this seems to help.
    Anyway, I'm hoping that pain (much better now) will eventually go away completely. cheers, your mr Bill
  12. Didoe

    Didoe New Member


    land sakes-i know cigarettes keep us sane and pulled together, but the price isnt worth it dear sir. never ever thought i could quit...but the price for quitting in my case was a loss of emotional anesthetic. the anxiety is so intense it also needed treatment. in fact, treating anxiety cut alot of the depression.
    verymadsmokinscientistmr.bill, i have to deal with humans daily so i fully appreciate that having to interact with bunsen burners and specimens in living colour could drive anyone to smoke...

    i'm discussing bariatric surgery; i was cleared by one dr. after my recent surgery records were reviewed, i'll talk to RA doc this month. i've let horrible parents and childhood keep me imprisoned in a fat suit and make choices a woman with a sense of Self and worth would never have made. i dont know if this additive(cigs, food) thinking can change at my age, its definately in the family but maybe it can be re-channeled into another obsession:)

    losing weight might also alleviate RA symptoms and joint stress. i've run out of excuses

    mr.bill, i have a 3" foam mattress-it sits on my "pillow top" mattress (a misnomer that is!) and it makes sleep better, but those things are pretty heavy to move around. mr. boo comes on tghe bed around 5am and patiently lays there until i realize he's there waiting for breakfast. once fed and i make up the bed, he jumps on the coverlet and rolls around...ahhh, he seems to say as he goes from side to side, the cow is off to the pasture and i have the bed to myself...if i ever get to a size 6, i'll kick his furry butt once and for all.

    there were tv ads about chantix in lawsuits, be careful or think about checking it out. i was on buproprion/wellbutrin which was for depression, it completely knocked out even thinking of cigs.

    someone is sure to notice you posted and i answered...i'll see u back in the lab, i'll be the double wide wearing a red carnation.

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