My husband is in so much pain and suffers from great fatigue that he can hardly make it through an 8 hour day at work. Has anyone needed to leave work due to Sarcoid? If so, tell me about your experience.
My husband is in so much pain and suffers from great fatigue that he can hardly make it through an 8 hour day at work. Has anyone needed to leave work due to Sarcoid? If so, tell me about your experience.
Stop Sarcoid,
Yes, I am in the same situation as we speak.
I went on FMLA leave, have used up all my sick leave, vacation time, and personal days. I have been out for the last (5) months. The doctor will not release me to go back to the line of work I was in so I guess I will be going back into investments (financial planner) or back in to the medical field. Are you considering the SSI or SSD route?
Tell us a little more about your situation. Where is the Sarcoid affecting your husband at this time? Is he on meds?
It sounds like to me that your husband is very fortunate to have you for a wife. I say that because of you taking the time to research and to join a support community for him. There are many out there that do not have support from their spouse.
Look foreward to hearing back from you soon :)
Have a great night.....Please excuse any typ- O's as I am making many tomight. The brain is not participating very well.
~Tonya
Hi There
My husband has Sarcoidosis of the lungs and in the central nervous system. July 2007 he no longer was working he would be sofatigued ,achy joints, short of breath, dizziness , eyes feel like they were burning . he would go to work some times not even for an 1 hour and be back home from not feeling well. it has been real rough road for him. when one works all there life and than gets a disease like this it stinks. he had to apply for disability and was denied we are in the appeal process.
Your in my prayers.
Tasha
Hello,
Yes, my husband as well has Sarcoid (lungs, thyroid, skin, etc.) and he hasn't been able to work since 2004. We have tried to get SSD and have been denied every time. We finally got a SSD attorney and now they are telling us it will take up to 18 months to get to the judge. Sigh... I don't know when they will understand that this isn't a "nothing" disease and that it is debilitating! My husband just got out of ICU a couple weeks ago and was in respiratory failure -- but I guess that isn't bad enough on their scale to receive SSD benefits.
Tasha,
Can I ask you a few questions about the Sarcoid being in the CNS?
How were they able to dx it in the CNS?
Not trying to sound ignorant, but I am in process of dx of either neurosarcoid w/ CNS involvement???
Are they the same thing?
I was originally dx w/ Sarcoid in lymphnodes and now having neuro and CNS problems.
Thank you in advance for the info. And again welcome to the community
~Tonya
It's been such a rocky road full of bumps and uphill battles. We are hopeful for a smooth downhill glide. He has had sarcoid for three years with one six-month remission period. He can no longer take steriods and has just begun Remicade last week combined with Methotrexate. When I read the discussion threads, I hear people saying they have specific sarcoid (ie neuro-, lymph-, cardio-), but we haven't gotten any specific diagnosis. His symptoms are many: fatigue, tingling in hands, feet, cough, shortness of breath, incredible joint pain, headaches, burning eyes. And then there is the occasional bizarre symptom that comes and goes like numbness in his hands.
He has no more sick days or vacation days. He has applied for FMLA, but of course, that is only for 12 weeks a year. He has already used 6 weeks.
This is my first foray into Disability Leave so I don't know the difference between SSI or SSD.
What type of work were you in?
Thanks for your kind words. They are especially helpful right now.
Stop Sarcoid
stop sarcoid,
I am so sorry that you all are going through so much.
True that FMLA is only 12 weeks....But, he may be able to get an extension above that. It would have to be documented of course by the doctor, but then he could just go straight into extended medical leave. That is where I am at now. Of course it does me no good because I have no money coming in :( as I have tapped out all my funds.
I am not sure what state you are in but here in Florida, it can happen that way. ...........You know what.......maybe that is only because I work for the state of Florida..........Oh my! I hope I'm not confusing you (i'm confusing myself). Anyhow, I do know too that here in Florida because I work for the state, I can apply for "Early Retirement" for high risk job before being vested.
I am an Officer for the state of Florida working in a maximum security prison with my post being in confinement. Not a post for me to be at now with the cognitive problems I have been having. Anyhow, sometimes I think that the chemical agents we have to administer on the inmates, irritates my symptoms.
That along with the stress of the job.
What type of work is your husband in?
I certainly hope that you get some answers soon. Please keep us updated or just pop in to talk......or vent!
Have a great night,
~Tonya
Hi all,
I was working in pathology when my health started throwing up little surprises. Blood in urine, then thyroid stopped working. Earlier in my working life I had had ovarian and pituitary problems which I now believe to be sarcoid related too. When I moved to a new lab, I tested myself for lupus, but it came up negative. One day a patient's broken blood phials came in. On the outside of the bag was a red notice stating the patient was hep B and HIV positive. I knew the lab I worked at was in a process of merging with another, and that there would be job cuts. I made up my mind there and then, that if I had an autoimmune illness, like lupus (as I thought it was at the time) working with biologically infectious materials like blood, urine and feces was not a good idea, because usually you end up on immunosuppressant drug treatments. I was never so ill as when I was working in path labs. I always had some severe sore throat or vomiting bug, and was suffering severe migraines which were affecting my work and concentration. Luckily I was retrenched. I ended up getting a job at a high school as a science lab attendant, but it was only temporary. I was beginning to have trouble climbing the three flights of stairs to the science staffroom, where I was based. As the school wasn't air conditioned, that was getting to me too. I decided to go to uni and do a BA while I figured out what to do with the rest of my life. It was during my honours year at uni that I figured out I had sarcoid (I knew that pathology training would come in handy) and was gobsmacked that it turned out to be correct. My health deteriorated even further during my second year at uni and got worse each year until my final year. Although I was ill, I managed to win a scholarship to do a PhD at a uni closer to home. For the first two years, after switching immunos, I went into remission with pulse prednisone and Plaquenil. A 3 month research trip to the UK was a bridge too far, and unravelled the remission. I have been ill ever since despite treatment. ACE is now double what it was, kidneys are packing up, last year I had neuro sarc. I have never had such severe fatigue. I cannot be upright for more than about twenty minutes at a time. Standing up is a huge effort, sitting is more like falling onto a couch, toilet or bed, as it is too painful to take my weight on my legs while trying to sit. Stairs are like Mount Everest. I cannot get up or down stairs one foot on one stair at a time anymore. I have to go up and down stairs putting both feet on each stair. Going down is painful, going up, I barely have the strength to push myself up onto the stair. I could work maybe an hour a day at a computer, or on the phone, if such a job existed. That is about all I can manage. Sometimes the pain is so bad, I need oxycodone. Lungs are OK at present so far as I know. I have sarc in the bone, muscles and tendons. I live in Australia and it is much easier to get disability here, thank goodness. I know in my heart I couldn't manage a day's work, even with the best will in the world and even with a need to do it. (We don't get much money wise on benefit) University study is much more flexible than paid work. If I go into remission, perhaps I can use my studies to get me a job then. Now, I am grateful for the welfare. All I can do is suggest you don't beat yourself up about needing help. The disease is no fault of your own. I know several people with sarcoid and all of them at some time during their working lives, have had to give it up. Giving up work may not be permanent. You may find yourself well enough to go back to employment someday.
Pris
I was a Special Education Teacher for 26 years. I wasn't diagnosed with until I had renal failure. I spent 18 days in the hospital and went on dialysis 3 days a week within the first week of my stay. I had to stop work instantly. Kidney failure automatically qualifies you for SSD, however the process is still not quick. It took from Feb., when I filled out the paperwork and had an interview until to Aug. to get my first check.
Luckily, I had Teacher Retirement and disability insurance. It pays to have your eggs in more than one basket!
Good luck.
Sabrina
stopsarcoid,
I have had this disease for over 8 years. Until my gallbladder removal May 1st I had been working. School was out for the summer so I expected to be ready to go back in the fall. But by mid July I was still not better and it wasn't the surgery that was the problem. Fatigue, nausea,dizziness, blurred vision, abdominal discomfort/pain and brain fog are my everyday symptoms. When I talked to the Dr. about work I guess I expected he would have a pill for that. He had given me pills for the fatigue, and nausea and they had improved my QOL(quality of life). He has given me a note for work through the first of the year but I know that was for me, he doesn't think I'll be back this school year. I have spent the past 4-5 weeks learning what I needed to about this disease. Just be careful, it can be overwhelming at times. Focus on how the disease affects your husband and not all of the possible affects. My symptoms are basicly the same now as 8 years ago only increased. Also, there is no cure, the steroids are our best control but they are nasty as you will read and not for long term control. It does depend on how active the disease is, so it may not take as long for you. Accepting the effects of this disease can be difficult, give yourself some time and support from family. However, there are so many,much more vial diseases, this one stinks but if I have to sit on my back end and let the med.s do their work, in a year I could have my life back. I don't drink (if you saw my liver you would think I had) but when I'm off all these drugs and healthy again I think I'm going to celebrate! Everyone on this site will celebrate with me I know. God Bless you in this journey and if you want to chat with any member privately, ask specific questions, invite them to be a friend and then you can send messages from your friends list. Pat-y
I'm heading into my 5th month on disability leave from my work; no vacation left for me, either. I haven't yet applied for SSDI; I've still got until November before my short term disability runs out, and then it's on to long term disability if things don't improve. I'm hoping to avoid that! My doctor has told the disability folks that I could do some work, (extremely part time) but the Human Resources department of our company doesn't want me back until I have no restrictions. I'm a bookseller, and there's no sitting jobs for me; it's on your feet all day, so there's no position to retrain me to. Of course I'm making squat off this disability; after all the deductions I make about $30 every 2 weeks. The upside is that this keeps my medical insurance going, without which I'd really be hurting. My wife works for the Post Office, so we've got enough to live on. Barely. My mother-in-law thinks I'm lazy because I don't get another job; after all, there's all these great jobs on the internet, and I could work from home! Yup, great idea. Anyone know of some high-rolling net job with benefits I can stay home and do? *grin* I also think my current work and the insurance people might think that's not too cool; paying my medical bills while I do something else. That wouldn't fly, and I can't afford to be without that insurance right now. It's a plus that I don't give a rip what she thinks, I guess. *grin*
I hate not being able to work, since I love my job; but it's hard to be on the go all day when my heart's pounding and I'm out of breath just using the stairs in my house. I just yet and keep up the daily walks with my wife, and hope things will improve. Good luck to you!
From the time my neurosarc hit me in April, 2000, I was only able to put in a few days of actual work (at the peak of my early prednisone treatment). I have been in various degrees of disability and pain since that time. People look at me now and think I should be returning to work. However, I look at my current job as balancing my med levels to control my pain, to limit side-effects, and to assuage the fear of returning sarc. When I do leave the house, it is usually to go to the pool or gym, to get my weekly exercises that keep me mobile. If disability retirement is an option, I recommend it for those with intense, chronic, sarc pain.
YES, I HAD TO LEAVE WORK WHEN I FOUND OUT I HAD IT, AT FIRST I THOUGHT YEAH I'LL TAKE TWO WEEKS LIKE A GOOD VACTION. AFTER STARTING SUCH LARGE DOSES OF PREDNISONE 80MG A DAY. I COULD NOT REMEBER WHERE I WAS OR WHERE I WAS GOING. I WOULD GET TO WORK AND COULD NOT REMEBER ANYTHING. I WAS THE GO TO PERSON AT WORK AND ME ANSWERING A HUNDRED QUESTIONS ADAY WAS NOTHING. ME AND MY ROLODEX. BUT SOMEBODY ASKED ME A QUESTION AND MY MIND COULD NOT COMPREHEND IT AND I COULD NOT REMEMBER.
AS FOR DISABILITY, I GOT IT BECAUSE I HAD DIABETES AND HIGH BLOOD PRESSURE, AND ANXIETY FROM TAKING THE PREDNISONE. AND THE LAST THING LISTED WAS SARCOID.
GOOD LUCK AND GOD BLESS
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