GrumpyCat, sorry you had to go through all that! I can’t even imagine how hard it would be! How are you doing now? It sounds like you have good support at home. But, from what I remember, you are in the age range of my children and you worked as a nurse, as two of my daughters do. When I hear of young people like you having so much pain you have to quit working I just feel so sad for you, and know how sad it would be to see any of my own kids or grandkids fight through something like that. And it very likely could happen. So now I’m thinking I’ve been very lucky my PsA isn’t severe and I don’t have a physical job and am able to keep working. I hope there is a med or something that will help with your struggle! It just seems so unfair! Good luck to those of you who are having a hard time finding the meds that can make your life better.
I was struggling with the same decision recently. I work for the U.S. Federal Government and could probably retire on federal employee disability. Then, I started a new med Cimzia .The Cimzia is helping a lot !
However, today I met with a financial advisor to plan for an early retirement - I don't know what the future will bring or rather what PsA will bring ! :-) I do know that either way, I will be fine. If nothing else, PsA has taught me to adapt and adjust my perspective to be happy and I am and I will continue to be happy damn it !
If you do decide to retire, perhaps you could do volunteer work that will give you a whole new wonderful identity - there are so many options for volunteer positions. You could work at home, periodically, part time etc.... There are several great websites that post volunteer jobs.
I wish you the best as you struggle with this decision. I hope my comments have been helpful.
Frances
At Psoriasis.org you can get info on the United States disability process and how to plan for it. Here's the link and I posted the content below, however you need to go to the site to see all the links in this article.
https://www.psoriasis.org/access-care/disability
I hope it helps.
Applying for Disability
Applying for and being approved for disability benefits (SSDI) from the Social Security Administration (SSA) can be a time-consuming and challenging process. The National Psoriasis Foundation offers the following resources to help you prepare your case.
Learn more about disability benefits and eligibility requirements
Disability planner: Explains Social Security Disability Insurance and Supplemental Security Income program benefits, who can receive benefits and how to qualify.
Description of Social Security disability benefits and how to apply.
Social Security Blue Book: A listing of impairments for adults. People with psoriasis may qualify under section 8.05 (skin disorders). People with psoriatic arthritis may qualify under section 1.02 (major dysfunction of a joint) and/or section 14.09 (inflammatory arthritis).
National Organization of Social Security Claimants' Representatives:
This resource site includes a useful list of frequently asked questions along with access to a lawyer referral service if needed.
Find a local Social Security field office »
Beginning your application
Tips for presenting a successful disability case
Tips for filling out the application
Social Security Administration Disability Starter Kit
Interview Checklist
What You Should Know Before You Apply
Medical and Job Worksheet
Materials to submit with your application
Letter of support from the National Psoriasis Foundation
Facts about Psoriasis
Facts about Psoriatic Arthritis
It's important to involve your doctor by requesting a letter that supports your disability claim. Your doctor can present your specific medical history and explain how psoriasis and/or psoriatic arthritis has affected your ability to work.
Template letter for physician supporting a disability claim
Legal Assistance
If legal assistance is needed, resources to help find a lawyer or disability representative in your area include:
National Association of Disability Representatives
LawHelp.org: Helps find free legal aid programs in local communities for those on low to moderate income.
Request an information packet
To request an information packet on applying for disability by mail from the National Psoriasis Foundation, email ■■■■■■■■■■■■■■■■■■■■■■■. The packet includes the materials listed above.
Here's the LUPUS site link to info on Social Security Disability:
Why would you be wrong? The subject of this discussion means that those who have stopped work when that was the best thing to do are the most likely to reply. There are plenty whose disease doesn't get to that stage. If you are feeling like you have time on your hands - well, that sounds like a very good omen! Go for it, go with your gut feeling and I hope it works out just fine!
Rebel mom said:
All of this is scaring me. I am looking to go back to work Part-time so I can feel productive. All of my children are in school and I am finding I have lots of time on my hands. Wonder if I am wrong?
I still work part time…I do get exhausted at the weekend especially with MTX on top of the exhaustion. At the moment I’m keeping my head above water but found out during my last flare that because my son lives with me presently and brings in a wage, I am not entitled to any help what so ever (I’m in the UK). It was a bit of a blow to say the least but as I’ve never been given anything I shrugged my shoulders and had to suck it up and find away to work, without killing myself. Most weekends I sleep, on the sofa, in the garden, even had to pull the car over and sleep lol. I do love my job and most of our patients and I find it so rewarding. Luckily my boys pull their weight at home, and my partner has bought a house near me which he’s doing up, with the hope I will move in with him and in his words “only work when and how long I want to” bless him!
It is possible to work, but everyone is so different in how they are affected and how their work managers treat them. Luckily I work in the NHS and mostly, as my conditions are so well documented and my union rep stands firmly at my side, I’m working 27 hours a week of 3, 9 hour days with a rest day in between. If I didn’t have these adjustments I don’t know where I would be…just need to hang in there and work if you can, want to, are able to.
Well I can understand the dilemma. I have only been "retired" for a few months. I might as well still be working. First of all I loved my job(s) but NOW, I have new jobs that are just as consuming as the old. Ones mindset is more important than anything. For me self imposed deadlines are inviolate.
But last night sort of presented a new dilemma. We had do admit my granddaughter to the hospital (PsA related issues) for pain management hydration etc. and didn't get home until after midnight by the time we got her settled. I poured myself a nice 18 year-old single malt. decided to enjoy the quiet - something VERY rare at our house. I pulled back the lever on my recliner and once again as leaned back, I kept goining until both feet were in the air I'm on my back both feet in the air, loudly using unbefore heard word combinations, which is then followed by a loud crack. My beloved recliner is in several pieces.
A word to the wise DO NOT CALL the furniture store owner at 2:00 AM for an emergency house call.......................... They have NO sense of urgency or understanding
I’m trying to imagine it, tntlamb … no, I’m trying not to imagine it!
Hope your granddaughter is recovering, and I hope the chair is still under warranty.
I genuinely think that's a very sad story. I just hope the single malt wasn't in your hand at the time.
tntlamb said:
Well I can understand the dilemma. I have only been "retired" for a few months. I might as well still be working. First of all I loved my job(s) but NOW, I have new jobs that are just as consuming as the old. Ones mindset is more important than anything. For me self imposed deadlines are inviolate.
But last night sort of presented a new dilemma. We had do admit my granddaughter to the hospital (PsA related issues) for pain management hydration etc. and didn't get home until after midnight by the time we got her settled. I poured myself a nice 18 year-old single malt. decided to enjoy the quiet - something VERY rare at our house. I pulled back the lever on my recliner and once again as leaned back, I kept goining until both feet were in the air I'm on my back both feet in the air, loudly using unbefore heard word combinations, which is then followed by a loud crack. My beloved recliner is in several pieces.
A word to the wise DO NOT CALL the furniture store owner at 2:00 AM for an emergency house call.......................... They have NO sense of urgency or understanding