Work or SSDI?

I was diagnosed over 20 years ago with FM. I have been working full time since I was 18, I am now 59. about six years ago, I began to work from home because of what you describe your days to be and I couldn't handle it any longer. For the past two years, I'm having problems even working at home...just too much pain to sit for any length of time, or stand, or lie down, for that matter. I finally accepted the fact that I should apply for SSDI, which I did about six months ago. My doctor filled out a questionnaire that my attorney sent to me for her to fill out, the rheumy that I've been seeing for well over ten years. She wrote that I cannot work. There were three pages of questions and she completed the entire thing. I submitted that along with 10- years of medical records, underwent a psychiatric exam by a doctor that I was told to see and filled out the application. I just received a letter yesterday that I have been declined. They said that they do not consider me to fall under their definition of disabled because I do still have an income, even though it's not enough to pay for a week's worth of groceries, let alone put a roof over my head (thank God for my husband who still works and is 65 years old).
I have already contacted an attorney. I do NOT plan to take this lying down. If I get declined again, I will apply again.
Like you, I spent years and years shoving pills down my throat to feel well enough to hold down a full time job and take care of children and my home, not to mention dogs and cats. I fought off depression with pills, fought off pain with pills, took pills to sleep, a laundry list of pills. I finally woke up about two months ago and began seeing a psychotherapist who is helping me more than any doctor I have seen in 20 years. With her help and my doctor, I have completely weaned off Ambien and I am SLEEPING. I am also weaned off SSRIs. I know medication is right for some, and maybe it was right for me back then, but I cannot tell you how much better I am feeling now without all those pills in me. I still take pain pills, but my head is clearer, I rarely have the severe "fibro fog" although I still have some fog, nothing like before.
I wish you well
Miriam

I am 50 years old and have had Fibro for well over 20 years. I pushed and pushed through the pain and worked only to come home, go straight to bed so I could get up in the morning to do it all over again. Weekends, in bed sleeping just to be able to get up on Monday and start again. I was on large doses of pills for the pain and it didn't touch it. Doctors would not prescribe more and I had some tell me that I just needed to learn to live with it. After back surgery and knee replacement, that pain is better but the fibro pain remains and I am in the fog most of the time. In May my rheumy said , no more work. I had the knee surgery in Jan. and had been on STD since that time so now I have not been working for almost 9 months. I filed for SSDI in June as well as LTD and am still waiting for a decision on both. LIke you... I have major medical documentation and IF they deny, I will not take it lying down either. We have been forced to move because my husbands income will not support us. I'm moving in with my daughter and son in law at least until one or both benefits are won. I don't understand how they can turn someone down with the issues you are having nor do I understand why doctors and insurance companies that have no knowledge of your health issues can make those decisions. I have not hired an attorney yet, but If something doesn't happen soon I will fight for the benefits I have worked hard the last 30 years and paid into for illnesses such as this.

Don't give up. We have to fight and if even one of us gives up the strength of the chain get's weaker. We have to stand up for us. This is not welfare for someone that does not deserve or someone that can go out and work. Our illness is what these programs are set up for in the 1st place. I'm done feeling guilty for being sick. I've lost a good job, good salary and great benefits, who would give that up for what SSDI pays... IF I could work I would and so would most of us.

Stay strong...and keep fighting.

Thanks you for everyone who wrote in!!!  I feel so guilty even thinking about quitting my job.  I am just so tired of the struggle every day.

I see a pain specialist at a Pain Clinic next Thursday and hopefully he might have some answers or suggestions.  My problem is not being short of pain killers.  My GP takes care of me in this regard.  My problem is the poor quality of life I have even with the pain killers.

Thanks for your reply, Sheila! I have heard (and maybe someone on this forum can correct me) that you must be unemployed for 6 months before you are eligible for SSDI. Even though my doctor said he thinks I could apply (his idea that came out of nowhere at my last office visit), I think I would have to quit my job and wait for 6 months. I can't make it financially for 6 months without pay.

I do know someone who was so stressed out from work that she quit her job, filed for unemployment and got it for 6 months, then went right on SSDI. Her employer, a hospital, made her life a living hell. When she told them she had Fibromyalgia, they gave her tasks which required heavy lifting and frequent standing. They expected her to do 10 hours of work in an 8 hour day. When she quit and filed for unemployment, the hospital appealed and lost, so my friend got the unemployment followed by SSDI.

I was on ssdi for several years but hubby made too much money for me to get any checks after a little while. Due to a court ruling that was being appealed, I got to keep my tncare (our state's medicaid) for several more years after that. I was finally of f the tncare which was hard because it pd for any medical expenses that blue cross blue shield did not pay. SSDI sd that because I was not getting a ck they took my off of it. So if I ever get where I can not work again, i have to go through the whole process again.

I went through vocational rehab and got a medical billing and coding certif at the local college. I now work 6 hrs a day m-f for a medical billing center. They let me work 6 hrs because my pcp sd best. I miss a lot of work but they are great. I broke my back and got on fmla. I had surgery on shoulders and let me off for awhile. The scheduler even gave me a set schedule 2 pm -8 pm cause i sd i was not a morning person. I sit and take calls. sometimes the typing gets to me but i make do. I need the money. hubby says if they ever fire me or i can not work it will be applying for ssdi again.

Good luck,

 

Northwoods,

 

Hello!

 

I work a full time 40 job as an admin. Every day I wake up, I am so sore and hurt so bad. Everything hurts. I slowly make my way down to let my dog out and take my medication. I'm currently on a 75 patch of fentanyl. I also have oxy for break thru pain. just started this other pill that I can't remember the name, as I started swelling up again will taking neurontin.

Anyway (sorry that fast I got off track) I ask myself every morning in the shower...how much longer can  do this?? Then I get to work, spend periods of the day when I am either is so much pain, or I'm trying my best to keep from falling asleep. They are letting people go here right and left. The writting is on the wall, severence pkgs galore, I'm trying my best to ride the tide out, I've been here for 13 years, but prior I've always worked since I was 16. I get home only to go straight to bed. Then I try to get up about an hr or so later to cook. Sometimes I can cook, sometimes I can't. So pretty much laying down for the rest of the night. Then comes the weekend when everyone else is talking about what they will do for the weekend, I already know my plan...rest, nap and spend a lot of time in bed re-couping for the previous week and trying to get myself together for the next week. It's really not an exciting and wonderful time, but I know that there are people out there terminally ill that would fight me for a chance to still keep on keeping. But it's hard and for me...I get very depressed thinking all the time "Will this be the day I can't take it anymore?".. I get 4 weeks vacation and a week of "flex" time. It's June and I have exactly 1 week of any of my time left. That's for my shore vacation that I try to keep visuals on at all time.

 

I say all of this to say...you are not alone. I think all the time about applying. Financially right now we can't loose my income. It's very hard. No one understands why I am not more social on the weekends...I actually caught my boss sort of making fun or poking at my by saying...are you going to lay in bed all weekend?? It hurt especially because I don't do that because I want to.

Hang in there and know that each morning you go thru your "mind" game to get to work, you are not alone, many of us are doing the same thing. Keep your head up friend...work as long as you can, I guess they say you will know when enough is enoug.

If they are willing to accomodate you, that would be great!

My option is either STD or leave

 

I have intermittent FMLA, but I have used up all extra vacation time for that. So the next time I am sick until October 1st, when we get more time, I don't get paid to be at home.

 

If I could reduce my hours to 20-30 it would be so much better, but this company as big as it is...and getting bigger all the time (hint, hint) NBC...Universal Studio's....lol they will not let you work any other thing that what you were hired for.

Hi... I have joined here a while back.. I read the posts alot and I  "think"

this is the first time I am posting.

I read your stories and felt I had to respond.

I am going to be 58 years old, and I am on disability.  I worked all my life and when I was 54 years old my husband who passed away suddenly 5 months after I left my job as administrator for 15 years.  I had to go on unemployment

sick pay at the beginning and then apply for disabilty from my private insurance at work 3 months later.  The month my husband passed away I was 54 1/2 I got a call from disability to see one of their doctors - 3 weeks after he passed away..  and I had no choice but to go.. even if I didn't know what world I was in with my grief of loosing my beloved husband.  2 weeks after that I was accepted for long term disability and have been on it ever since.

The last two years at my job, I would go to work one day and take off the next day.. or I would go in for 3 days and then could not go in for 2 days and this went on and on... luckily I had a good boss.  well when my husband and I made the decision that I leave work as each morning I would cry and feel so sick.. it was a hard decision because I loved my job. 

I had days at work where my pain was intolerable or I had vertigo of which I have chronic vertigo, menieres, arthritis in my neck and disc probs in my neck that also cause me alot of weakness and vertigo..  so I told my boss and our exec director and they helped me with the disability... and over the years before I left work...I kept each piece of paper that my doctors had on me.  I always asked for copies of everything.   I also kept a log of all I was going thru...  and god bless my husband for putting together my huge disability file for me as I could not even think straight to do it.  I also have a generalized anxiety disorder plus many other things.

My primary doctor wrote letters, my rheumy wrote letters, my hypertension doctor wrote letters and my ear nose and throat doctor wrote letters to go with the forms they all filled out that disability needed.  and my boss wrote letters to disability to tell them how I was.   My husband also wrote a letter as did my close friend.

so that is my story..   it has been 3 years without my beloved husband and I have gone down hill with the anxiety, fibro, neck pain .. became anemic and low in b12....  

I have my little dog and she kept me going with my husband gone as believe me I didnt want to go on without him.  He was my rock.. he never complained and he always said to sweetheart it is not your fault you are sick.    Like I said if not for my little dog who was also my husbands little love I dont know how I would have survived the last three years.

could I ever work again.. no.. 

each day is a trial for me... I never know how I will feel till I wake up in the morning.

some people understand .. some people do not..  for those that dont.. I have stopped caring if they do or dont....  the people who do are the ones I kept in my life.

I am isolated yes, and I miss my husband as if it were yesterday. 

I cannot even take my little dog for a walk and the weather is nice.

I am super sensitive to all the drugs out there for pain and fibro and anything that might make me dizzy is not going to work for me...

so I am caught tween a rock and a hardplace....

one thing I could tell you .  all my doctors put anxiety disorder first and then fibro....     they all really helped me..... and as I said above I was lucky I got disability right away. .. no waiting no problems..   I think also

cause I had the help of my doctors and my boss and the fact that my beloved husband died was a factor in me getting it so fast..

that is my story.....sad but true....  

starry-eyes

Post Edited (STARRY-EYES) : 6/18/2011 5:18:34 PM (GMT-6)

Hi there, I just moved from Minnesota to Central California. The weather is lovely here. I finally just left my job a few days ago. I was on a medical leave before that, so I've been off work for about a month. I was denied SS when I applied back in October, so I appealed. I'm still waiting to hear back. I have to admit that I'm getting bored, but I'm just so sick that I don't know what else to do. However, it does allow me to take better care of myself. I started painting, and I really like it. I do miss being with people, so I'm going to try to socialize more to see if that helps. We will see, as I've been too sick to socialize in the last month. Blah...as you know, there aren't any easy answers. Do what feels right to you.

As far as financially, we've now down-graded our cable package, down-graded our smart phones, and cut other expenses. I'm going to sell my car in the next couple weeks as well. I'm just doing what I have to to get well. I've been in a terrible flare-up the last 9 out of 11 weeks. I can't stand it anymore.

Good luck to you and stay warm up there in MN!!!

Wow, this thread is really powerful.

I work as a teacher, and there are many days I come home and collapse. I rest for a while, then am up for a few more hours getting only essential things done, then back to bed to spend tossing/turning time trying to sleep. I live for school vacations and summers. I love my job but not the toll it is taking on me. I am mid50's.

I just re-read my old post on here. I finished a temp job as of Dec 19th. I worked for 16 months. Out of those months, not one went by when I wasn't out sick due to Fibro related issues. Since I was a temp and was the only person that could do the admin job, the dealt with it. I was so exhausted, came home everyday to lay in bed to struggle thru the week. Weekends were just rest days to gather up rest from the previous week, only to start the cycle again on Monday. Sunday nights were the worst. Well actually every night is the worst, you all know the drill....you I ever know how you are going to feel in the am.

Fast forward to know. I'm on unemployment because I need an income. My husband works and he makes more than me, but we been both incomes to make it.

I'm actually waiting as I type from a call back from a friend that has Fibro. She got approved for SS with a lawyer. I didn't want to have a lawyer take $$ away, but then again....if they can win a case, make that is the way to go. I'm either filing myself within the next 24 hours, or going to see a lawyer. I can't keep up with a job anymore.[\b][\purple]

Post Edited (Hopegirl) : 2/16/2015 1:01:46 PM (GMT-7)

Txcola,
That's absolutely right, putting yourself first. IT's taking me a lot of practice. I notice people are so often disappointed, as if well, golly, they can't push me around (at work, etc. except for some friends who understand). I wish I had done this a lot sooner in life and spared myself so much misery--that is being walked all over by not so very nice people.

I also live in an area where I find the culture rude, Central PA. I'm moving in June out of the area. I just can't take these people any more. It really dawned on me, after shopping in a crowded Wegman's in another more culturally diverse, and an educated area, it was the day before Super Bowl. Rather than getting mowed down by the carts of the rude people and being ignored or given dirty looks, I was hearing "excuse me's", "sorry's", hellos and eye contact included. Living here, a stranger among these unfriendly folk, an outsider for all these years (and yes, I've made many efforts to make friends--they usually move away), I'm ready for change.

Fibromites thrive on kindness.

Jen