Need a little help and/or advice

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Veteran Member

Date Joined Dec 2006
Total Posts : 708
   Posted 1/25/2008 9:24 PM (GMT -6)   
Hi everyone.  Been a while since I've been on.  Been very busy and constantly dealing with pain.
My job has changed.  For the last 1 1/2 years I have worked from home as a medical transcriptionist for a hospital and been able to deal with the pain and fatigue caused by both the lupus and PBC.  Doing the transcription job involved sitting all day and typing.  Well, long story short, my transcription job is being eliminated and the hospital where I work has had me coming to work in house and I've gone from sitting all day and resting when I needed to at home and now am on my feet for almost 8 hours straight every day for the past few weeks.
My whole body is in a flare from all the extra energy it is taking to be on my feet all day and walking constantly.  Sitting at home and typing was gentle on my body and although I had pain it was nowhere near what it is now.
I have to keep the job I am presently doing as I have bills to pay and no other means of support except for me.  I'm just starting to look for other work but that could take quite a while.  Plus I absolutely have to keep the health insurance and prescription benefits for the PBC medicines and stuff.
Any ideas on how to deal with all this?  It's not like I can tell my boss "no I can't do this or that".  I have to do what I'm told or will be let go.  I'm just feeling at a complete loss as to what to do.  I don't know how long I can continue at this pace and pain level.  I come straight home from work and am in severe pain by then and just literally collapse on the couch and stay there until going to bed and not sleeping well at night and get up and have to do it all over again.
How would I go about maybe collecting SSDI?  Do I have to be a certain age in order to collect it?  Are there legalities for people like us that I could look into as far as my work environment is concerned - like they legally have to let me sit for part of each day, etc.?  It's gonna take a lot of time for me to find another job that will work for me as far as the diseases and symptoms are concerned so am wondering if there are other options.
Sorry so long and drawn out.  Guess I needed to vent a little as well.
Lupus 2008; Primary Biliary Cirrhosis 2007;IBS 2004; Chronic Hives 2002.
Medications:  Allegra, Zantac, Ultram PRN, Xanax, Darvocet, Ursodiol.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 1/25/2008 10:18 PM (GMT -6)   
To get SSDI you would need to quit your job and apply immediately. You would need heavy support from your doctor(s) too. It could take years to win your case and they will only start benifits 6mo after you officially cannot work due to your disease. You should be able to say you can't do something so long as you have a doctor's written detailed report of what you can and cannot do- they cannot discriminate based on disability/physical inability to do something and have to make reasonable accomodations. I suggest looking for a position that at minimum allows you to sit. I would also ask your doctor about prednisone or some other medication to manage the lupus better. Seriously, none of the meds you have listed look like any of the lupus management meds I am familiar with- Pred, Plaquenil, Imuran, Methotrexate, Cytotoxin.

Remember you are protected by the Americans with Disabilities Act. also call your state vocational rehab because they can often help you find a job that better suits your needs or even give your employer an incentive to make your current job work for you.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia

Regular Member

Date Joined Oct 2007
Total Posts : 185
   Posted 1/25/2008 10:31 PM (GMT -6)   
I filed last April and have been denied twice... they say, according to them, I should be able to work....

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 1/25/2008 10:44 PM (GMT -6)   
Hi Diane:

I just wanted to say I'm sorry you're having such a hard time. Redrose gave you good information on your SSDI. You have to have paid enough quarters into Social Security to collect SSDI. You may qualify however for SSI which is a supplemental disability. However, again you need your doctors backing you. Sometimes you need to hire an attorney to help you win your SSDI case. I was turned down 2 times and had to have a hearing to approve my SSDI case. I applied for Disability in 2004 and I've yet to receive any money from them.

I'd talk with your doctor and try to get on some medications to help treat your lupus and maybe you can get some pain killers from your rheumy too. I'm very sorry you're in this position and I'll keep you in my prayer. I wish you will and pleases let us know how things turn out.

Weleetka, welcome to the forum, it's normal to be denied sometimes several times before getting approved.

Take care,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

lifesworth living
Regular Member

Date Joined Jan 2008
Total Posts : 28
   Posted 1/26/2008 3:16 PM (GMT -6)   
hi, i am sheshe i just joined and am not yet very good with a computer so please be patient with me my story is in 2004 i was told a biospy of a spot on my forehead was lupus my blood test have all been normal, even though i have had alot of pain and tiredness. im not sure what is wrong with me i have good days and bad days i have realy gotten upset with going to my doc. it seems like one visit im told i have corpultunnel the next time he thinks its a nerve in my neck causing my pain in my arms i have really gotten confused     sheshe                                                       

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/26/2008 3:36 PM (GMT -6)   
Hey Diane,
I know your dilemma.  I faced the same frustrating decision when I was diagnosed.  I ended up quitting my job and focussing 100% on the application process for disability.  The gov't (Canadian), got me processed and receiving money almost immediately.  Through our disability pension plans.  Then through the province, I had an opportunity to receive further assistance with another program.  That one took over a year and 2 denials to get.
I don't know the US system at all.  I wish I could help you more.  But this is sort of a catch 22 isn't it.  You need to work to be able to pay for meds, but you can't work because you're too sick and worn out...... I hope you can figure this out soon. 
All the best,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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