How the heck do you guys work?

[ppk]

Hey everyone,

Recently I lost my job due to the amount of work I missed, and am in a very difficult position financially. I am currently on unemployment, but that only lasts so long, and I don't think it's possible for me to work full time right now, with the severity of my sjogren's and ankylosing spondylitis being what it is.

How do you guys make this work?

[eye2dry]

  hello.

Not all of us can work. I was diagnosed with sjogrens and RA in 2010 and I had to retire
from my job as an LPN in March 2015. I just up and gave notice one day.....one bad
and hard and difficult day I just shriveled. I knew it was coming though. I asked to be
made a receptionist....asked to be assigned phone work (pharmacy, insurance, test results)
but no go.

I filed for disability (SSDI) in March 2015 ad was approved August 2015. I have a husband who
has a good job so that helps.

Those who still work have jobs/employers who are understanding and will make allowances
for their disability. Some have SJS that is manageable to work with. Some have a good
support system at home so they can focus all their energy on maintaining their job.
Some work part-time. Some take a lot of meds in order to put one foot in front of the
other in order to make it out the door every day.

Have you filed for disability? How old are you? close to retirement? Do you take prescription
meds for your diseases? Do you have help at home? What type of work did you do?


shelly

[ppk]

Hi eye2dry,

Thank you for your response! It's very helpful to get someone else's perspective.

Sorry to hear about you having to retire due to Sjogren's and RA - that's too bad! Nobody wants to be stuck at home, unable to do anything due to extreme fatigue.

I just filed for disability last week. I started an application this last Winter, but never finished it because I had second thoughts and wanted to push through and keep working. However, my autoimmunity continued to get worse, to the point to where I was almost falling asleep at work, and would need to go to bed immediately after work.

Believe it or not I'm a 29 year old male with Sjogren's. Additionally, I have gluten sensitivity, post-infectious IBS, and ankylosing spondylitis - which is an autoimmune disease that attacks the spine. There have been countless nights where i don't sleep a wink because my back hurts so badly that I can't move, and my eyes are so dry my eyelids stick to my eyes.

I'm not anywhere close to retirement so I want to cure my autoimmune conditions while I still have my whole life ahead of me. I'm single, but I want to be in a relationship and start a family. While I still have systemic autoimmunity and no job, I don't see how those goals are achievable.

Recently I started taking hydroxychloroquine, which has been very helpful for the fatigue side of things. However, it was too little too late as my employer still let me go, citing my frequent absences (which I took in order to see my multiple PCPs, gastroenterologists, rheumatologists, opthalmologists, therapists, etc etc).

I live alone in an apt., and both of my parents live together 3 hours away and are dealing with their own problems. So, in terms of day to day chores, I'm on my own, and I have no emotional support. I'm also running out of money, and am not sure how I'm going to afford rent in October. Furthermore, with the cognitive effects Sjogren's is having on me, every day I feel like I'm losing a bit of myself. I always prided myself on being a smart and curious person, and I'm not sure if that's going to be possible in the future.

[Joe S.]

I did for several years. Then I went part time. Stress and sun got to me and I had to quit. Several years later I got disability from the VA. I did not have enough medical support to get SSDI.

[ppk]

I did for several years. Then I went part time. Stress and sun got to me and I had to quit. Several years later I got disability from the VA. I did not have enough medical support to get SSDI.

What kind of medical support do you need to get SSDI?

If I work part time, which I really want to do, I don't see how I'll be able to afford my apartment, food, and car (and I live extremely frugally).

[eye2dry]

I think maybe Joe means enough medical documentation from
all his doctors.


I submitted every dr.s name that I saw.
My eye dr. ,  family dr ,  rheumy , dermatologist , dentist
All these records from them documented all my health conditions
and limitations. I also when filling out all my paperwork for SSDI
was very specific on why I could not do my job.

SSDI also had me see a dr. of their choosing for a physical exam
and had me see a psychologist they use before making their decision.




eye2dry

[warmwaters]

Some do, some don't.

I had a sudden onset, and went from short term disability to long term disability. I then also applied for Social Security and was approved for that. I was about 50 at the time, so a very different scenario from your situation, though I loved working, and had to deal with the emotional fallout of becoming disabled. I'd been a pretty hard core "Type A" so it was a difficult transition.


From a practical perspective - go to the Social Security Disability website https://www.ssa.gov/disabilityssi/ and read about what you need to qualify for Social Security Disability. It's a combination of your work history, and whether you might qualify under one or more of the health issues you have. The real trick to getting SSDI is documentation - you've seen doctors who've diagnosed you with diseases that are disabling, and they can document how disabling they are. If you have cognitive issues, try to get them documented. Frankly, being young makes it harder - the Social Security administration is far more likely approve a 60 year old with a disability (because it will be hard for them to retrain and get employment) than a 29 year old.  This isn't necessary fair, but the stats trend that way.

In essence, you need to show how you can't work a 40 hour a week job, and what stops you from doing that. It may be that you take pain meds that make it impossible for you to be clear headed, or you need a 2 hour nap in the afternoon, or you can't sit for more than 2 hours or....

Second, search on this site for information about disability, SSDI, etc. to get advice about how others have gone about applying. There's a lot of info here.

Third, if you do all of this, and get denied, understand that many get denied, and file an appeal.

The other side of this is if you think you might be able to work, think about how that would be possible. Do you need specific accommodations from an employer, like flexible work hours, the ability to work from home, or special seating, lighting, or computer input devices? Or do you want to go freelance, and work at your own pace?  Do you have some skills that let you try a different type of job, if your current job isn't suitable?


None of this is easy, so ask us a lot of questions, and have some fun considering the answers.

[SjoGirl]

I cannot do the type of work that I used to which involved significant amounts of travel, many hours when I was not on the road, and a lot of stress.

Last fall my FT job was cut to half time and I took on another half time job + started consulting. I was exhausted all of the time and finally quit one of the half time jobs. I am fortunate to have a husband to help with insurance and the bills. I don't know what I would do if I were single or had to earn the same level of income that I used to.

[Joe S.]

Some of the doctors refused to give me their notes. They only hold them for 3 years so get copies of everything. Any doctor reports after you file are not looked at by SSDI. Those are my experiences.

[Nomad]

We went through this for a relative.
I think its actually a plus that you had to stop working due to your health...it shows the situation you are in.
How your health has negatively affected you.
From what I understand, if you have two illnesses, you are much more likely to get approved.
Sj. Syndrome might not be considered significant....so if you have three illnesses, even better.
If you have gone to the doctor regularly and have at least one doctor who is willing to write you a letter or at the very least has something in his notes indicating lots of trouble...pain, fatigue, difficulty working and so forth...this too will help.
Make sure at your next visit to the doctor, tell him or her about all your difficulties. Make sure they are known.
I would def. apply.
If you get turned down, do not worry about it one bit.
This is extremely common.
You might need to hire a SS Disability attorney. Yes, they will get some of your money at firist/from the top. But, that is a small part esp. when you consider  this is likely for many many years.
Remember, it often takes a long time and is a pain in the rear. And remember most people are turned down at first and a great many people use an attorney. Sometimes attorney's will suggest you apply and get turned down 2x before they take the case.
This is all very normal.
If you have two or three illnesses and are sincerely unable to work, visiting the doctor regularly, you will likely be fine.
Wishing you well.

[SabbraCadabra]

Coffee helps a lot, or I'll take a nap during break, but the exercise usually helps me stay energized, and then after eating lunch I feel a lot better.

...and then I get home and I don't want to go to bed because I know that I will feel terrible tomorrow =)

So the real question is how am I supposed to get anything done outside of work when I'm just completely dead all the time?? By the time the weekend comes, I've got so much built-up stress that I'm just a zombie.

[ppk]

Thank you very much, guys. I really value your experience and advice.

I will submit my application for disability, and fingers crossed, my Sjogren's, ankylosing spondylitis, and post-infectious IBS will be enough to recieve it.

However, I don't want to be in disability for the rest of my life. I believe I can enter remission if I get an umbilical cord derived mesenchymal stem cell transplant, so I am fighting to get that performed somehow. We need more people advocating for us out there - the current state of Sjogren's syndrome treatments is really quite disappointing.

[adamkingdm]

Hi ppk,
I'm truly sorry to read about everything you're dealing with, especially at that age. I am a 32 y/o male dealing with a very similar array of issues including IBS, AS and Sjogrens. For me, a definitive diagnosis has been difficult as I am ANA negative, SSA/SSB negative and HLA-B27 negative. My lip biopsy came back inconclusive (showed inflammation, but not enough glands were extracted) and my sacroiliac MRI showed inflammation but not enough (yet) to definitively diagnose AS. I'm currently only positive for Anti-SP1 Antibodies (IGA) on the novel Early Sjogren's Panel.

Just out of curiosity, what was your path to diagnosis? Have you tested positive for the traditional Sjogren's antibodies (ANA, SSA/SSB, RF)? Are you HLA-B27 positive? I'm asking because I've been told by multiple rheumys that Sjogren's tends to manifiest itself very differently in young males making a definitive diagnosis much more difficult.

[WhatYouSjo]

adamkingdm,

You sound a lot like me. Young male, seronegative, negative HLA-B27, abnormal but not positive lip biopsy. Some abnormal but non-specific blood work. I've met several young men in similar situations. It certainly makes one wonder if it is a trend for us. Unfortunately, we are uncommon enough that most rheumatologists don't have enough data to see a trend. My first rheumatologist basically told me to get lost because young men don't get Sjogren's Syndrome. Luckily I have a much better rheumatologist now that is willing to treat based on my symptoms. Not that there are many prescription treatment options available for us.

ppk,

I'd love to hear back on your MSC treatment if you can manage it. It's rare to find legitimate stem cell treatments for SS, but I agree that it is one of the more hopeful treatment options. Best of luck to you.