How do you people that work do it???

[bettypat]

I havent worked in about 2 yrs and then it was at a little church and I was a church secretary, a job I obtained before I found out I had P. What I cant figure out is how you people that work can do it while having a flare,I havent been able to straighten out my pinkie on my left hand for 5 days now because the skin is so broken and the p.a. there is so severe, I am so limited but there are those of you out there that have to work thru it, how do you do it? \
Do you have to take time off work during the flare? And I am wondering what kind of work I am going to be able to do after my kids are in school...will I be hired as a secretary again, will I be hired to work with people? What is out there for a P sufferer?

[web63]

Are you talking about PA (Psoriatic Arthritis)? Or just P (Psorisis)?
I have PA, and I have to force myself to go to work. I am miserable everyday, but I have to pay the bills.
It is very tough to get up every morning and get ready for work.
I do not think I could get SSDI. I will be 40 in February.
I have often thought about trying to get SSDI, but then I have this fear of being labled as disable.
As for me it is very difficult to work, I have not really taken any time off of work, I just sit at my desk (I have a computer job) and cry most of the day.
I am a guy, and yes I can cry :-) (hahaha)
Alot of my co-workers know what I am going through, so they have some sympathy for me. None the less it is alot harder to convince the BOSS person about my problem.
Thanks,
Scott in Atlanta, GA

[iansmommy]

Thankfully Ian doesn't have to worry about this yet. :) I am a stay at home mom. It is great because then I don't have to explain to others how to care for Ian when he has a flare.

Carrie

[heps]

Scott, you mentioned that it's very difficult for you to work & are afraid to apply for SSDI for fear of being labeled as "disable".
(Have you ever heard of the saying, "sticks & stones will break my bones, but names will never hurt me"?). Well if you could get SSDI, I suggest you try for it. Scott, the heck with titles, it's better than suffering to the point of tears. I've been on SSDI for some time now for reasons other than my P.
Sure I missed working but it's a heck of a lot better than suffering. It's bad enough to suffer at home let alone at work! Think about it Scott, this is my opinion of course.
Good luck with whatever you decide. HEPS

[mrwood]

Scott you really should think about applying for Disability. I did and I got it. It is a Godsend!! When I have really bad flares I do not know how I could work. At the time that I started getting p I was self employeed. My husband and I worked together and it didn't work out. He had to get a job and I was stuck. I have no college, no special training. All the jobs that I could get were hands on laboring. I have pustular psoriasis on my hands and feet. I have went a week or more doing nothing but sitting around with ointments on my hands so that I could get them clear for a day or two and feel a little bit normal.
I have had people think that because I am on disability I now have money but I don't care, they don't realize that money goes for me to get better. Without it I would still be sitting around all the time hoping I could have a day or two of relief.
Think about it Scott, life is short and you may be worse because of the stress you are under from making yourself go to work. If you can't work you can't work....bottom line.
Melanie

[Stormrider]

Does anyone ever stop to think the disability you collect now is what you worked for all those years? I fought it to until my caseworker told me it was what I had worked for. No one understands about this disease unless they have had personal contact with it. My advice to you Scott is stop worrying and DO WHATS BEST FOR YOU.
Disable Lorretta

[Rnbirkman]

Apply for dissability. I made the mistake of applying at one time and was denied.They told me nothing was wrong with my hands eventhough they were completely covered with psoriasis along with a little arthritis. I even had a letter from my doctor expressing the severity of psoriasis on my hands.It was hard for me to get my hands into my pocket to reach for change. I gave up without fighting for what I have paid into for all these years.Later on I determined I could have won this case just by holding up my hands in court. Now my children are suffering because I have to concentrate on paying the bills.Eventhough I continued to work or seek work I could do, there were times I could not and that is where I got behind in bills.

Don't let this happen to you. There is nothing wrong with applying for dissability because like it or not,if you have psoriasis, you have psoriasis. Don't let other peoples opinions destroy your rights.

[winter]

I FELT THAT I DID NOT HAVE ANY CHOICE IN THE MATTER SO I WORKED AND FLAKED AWAY.I EVEN WORE THIN COTTON GLOVES TO PROTECT MY FINGERS WHEN I USED THE COMPUTER, THE CALCULATOR, THE TELEPHONE AND THE TYPEWRITER. PART OF THE PROBLEM MAY BE THE DEPRESSION FROM HAVING PSORIASIS. I HAD THAT TOO BUT IT WAS IMPORTANT FOR ME TO KEEP FUNCTIONING. I AM GLAD THAT I DID BECAUSE REAL ESTATE VALUES SKYROCKETED AND HELPED TO PROVIDE FOR MY RETIREMENT. I COULD NOT HAVE PAID THE HOUSE BILLS ON DISABILITY. I GUESS THAT IT DEPENDS ON MOTIVATION. GOOD LUCK WITH WHATEVER YOU DECIDE TO DO.

[shawgirl]

I applied for SSD the first part of this year and was denied. Not only do I have psoriasis covering my hands/arms/feet/legs, I have pa in many joints of my hands and feet. I am using a cane now to walk (per my Rheumy). Plus, I have other medical problems (immune disorder, etc) and take 15 different medications also. I did not give up when I was denied, and hired a lawyer and had all my doctors (5 in all) write letters. Also, I have been in contact with my state representative, who was recently elected as Senator Graham of South Carolina. They have been in touch with SS and the Senator is in the process of writing a letter to the director. Who knows, maybe this will help to speed the process?? Anyway, I will not give up even if this next part is denied, for I will go before a court and show the judge in person, what kind of shape I am in. I am fortunate to have a husband that is in good health and can support me not working. I have worked for the past 20 years and if I am not able to work, I feel as though I should be returned what I have already paid into SS to help with my medical expenses (for they are many!). Everyone must decide about applying or not for their own certain circumstances. If I were the sole provider of my family, I would probably work until they made me leave, for SSD doesn't pay as much as my salary would have been.

[BTVSLAYER78]

Even if you are denied foe S.S., you can still appeal it. (I'm going through this now)
The only reason I even applied was because i have a existing condition-no insurance. I have leasions from top to bottom, and Pustular p on hands and feet. It is extremly hard to do Anything that does not require using your hands. I do have a supporting spouse like others, but the S.S. or medical whichever they choose to give, if anything will help with the outragous cost of medicine these days. Don't think of yourself as disabled, even though thats what it is labeled. Think of it as help.

[bettypat]

So at what point are we disabled? This is somthing I have wondered about a lot, I flare then I clear then I flare then I clear, you know the old routine, My P.A. is so bad in my hands when I flare that I cannot close my fingers...but then it clears, I wonder how they determine who is bad enough for ssd?

[gaymurphy]

I applied for SSD after four years of attempting to teach, each year found me either out sick alot or not completing the year. A cousin had known of a person with psoriasis who did qualify, she advised me to try. It was not a long or hard process, that was in 1971. I understand now there are more denials, and the need to appeal. I have been a housewife since, raising two boys, sometimes flared sometimes good. The drugstore seems to get larger and larger shares of my check. Disability is nothing to be ashamed of when you have a chronic disease. That is why we pay taxes. We live on a cattle ranch and like most in this line of work need a second income, I have been able to contribute that because of disability. I wish I could have been teaching all these years. Good luck to anyone who applies. Spend those feel good times, volunteering, helping others.

[PJ Leary]

Hello to you all,

If we were to view the condition from the outside in, there would be no question, as many of us have pointed out. So where is the issue? With the label, and the struggle for the earned benefit.

I applied for disability in my 30's. I was denied because I had not paid in for enough time to qualify. That was due to a variety of reasons. Part was due to the inability to work because of the disability. Part of the time I was a stay at home mother, part of the time I was a single mother who worked under the table, part of the time I worked above boards and paid in. I became discouraged. I understand that this issue can be very compilicated.

I have sorted out a way to earn a good living even with my handicap. I am among the more fortnate of us. I encourage those who are less fortunate to apply aggresively for those benefits to which you are entitled.

It is not possible to live with any moderate to severe psoriasis and have a normal life. End of discussion. Personally, I need at least one hour dedicated in the morning to treatment just to walk and talk and function. Most days, I need periodic breaks to re-apply topicals during the day and into the evening. Are any of you different??

Regards,
PJ Leary

[Stormrider]

I found out from previous experience whether you receive disability or not depends on how your doctor recomends you for it. If they feel you haven't exhausted all means & no meds are working they don't question it.
If your doctor doesn't make it sound serious enough they ignore you. Good system we have huh? If they can't see it or touch it ,it doesn't exists. This is another reason we have to help get Psoriasis out in the public. Knowledge is POWER!