Professionals interested in or active in supporting the education of children and adolescents with medical and mental health needs. Active members receive all membership benefits, and may vote and hold elected office.
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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.
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.
I filed last April and have been denied twice... they say, according to them, I should be able to work....
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.
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
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.
I had ringing in the ears. It went away over time while taking antibiotics. It's still there a tiny bit sometimes but it doesn't bother me anymore, most people can hear something in their ears if it's quiet enough.
I never did prior to lyme and now that I've been treating - the pulsatile tinnitus is gone in one ear and about 95% better in the other.
I've had some minor neurological symptoms and the ringing in my ears comes and goes. It seems worse when I'm tired. It was mostly gone when I felt about 95% better, then I had a flare. I'm back to about 90%, but I noticed the ringing again just the other night.
I get ringing in my ears ! that was my first and notifiable symptom. As I improve and my brain inflammation goes down the mental stuff does as well. I am actually clear headed today! I almost cried because for the firs time in two years I felt like my old self. I understand it can change but I thing it gives me hope that I still have a working brain and when I as I gain ground over this bug it can go back to what it was.
Did you try Curcumin for nerve pain? Its going to be frustrating at times but just keep on reaseaching and finding out what combo works for you. I can honestly tell you that my body works well with Pau d arco, Garlic, tumeric (Curcumin), eulthero, Sida, JK, HOUT, and supportive vitamins.
Another key thing I did is eliminated Gluten. I been two months 100% free and it made a lot of difference in head pressure. Keep emotional stress at bay. I know sounds easier than said. My fiance thinks sometimes I am unmotivated at times. I try not to care about certain thinks because right now I got to heal. SLEEP, SLEEP, SLEEP. Those neurons need to heal!! Meditate. Even when you think it inst possible to meditate try. eventually those neurons will learn to reconnect.
I used Darsi Axford to support me through challenges with an extremely stressful job which was causing anxiety and depression for me, for my transition into retirement, and for other challenges that came up for me. I had tried several other providers over time, but she was by far the most...Read More
Licensed audiologist Nicholas Stuart holds a master's degree in audiology and a certificate of clinical competence in audiology from the American Speech Language Hearing Association. He has been helping patients hear better for over a decade. His specialties include fitting high quality digital hearing aids and treating patients with tinnitus. Prior to joining the Total Hearing Care team, Nick owned his own successful hearing care practice.
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