SSD and CF and working

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Regular Member

Date Joined Jun 2004
Total Posts : 42
   Posted 3/27/2009 8:32 PM (GMT -7)   
Hi    Haven't been on for awhile. 29 in 38 days with CF that in the past 8 months has progressed a LOT. Lung functions down from 90% to 60% and oxygen at night with some during the day. 3 times I had to stop at the firestation for a little O2 boost. I owe them cookies. 4 major stays in the hospital, 2 being over a month long. Multiple times on home iv's and oral meds, And psuedomonis(sp) that is resistant to everything......and THEN!!!!!! I got a cold.
So, how are you all doing? :)
My question is SSD or Social Security Disability. Obviously with the above I don't need to tell you how hard it has been to work. I have a job, but I have been given notice "due to the economy"....and with my track record so far with my cf.......finding a new full time job, will be a BLAST!!!! Sure, I will show up to work EVERY DAY!!!! I can't guarentee that anymore. And a week ago I had my first episode of hemoptysis, followed by a severe panic attack. Yes, I am a wimp. I have no defense, I am a wimp. It happened twice in a 12 hour period and it was about 200ml of blood. Fun!
Are any of you on SSD? Are you able to work part time or temp jobs on SSD? Do you have issues with medicaid covering your meds or doc appointments ?  Have any of you with CF been denied for SSD? Where is a good place to go to get answers to questions on how it works and such without paying a lawyer $$$$$$?
Thank you for your time in answering my questions.
Diagnosed: Cystic Fibrosis, Diabeties, Osteoporosis, Marcus-Gunn, Hasimotos, Webber's Syndrome, Raynaud's, Reactive airway disease, Aspergillus, 2 strands of pseudomonas, scupluariopsis, ashthma, fibromyalgia, achromobacter xylosoxidans, scedosporium prolificans fungus, basliar migraines, frontal lobe seizures(in two doc's different opinions on this one), Depression
Medications: Too many
Allergies: Everything under the sun
Motto: It will be OKAY

Regular Member

Date Joined Mar 2007
Total Posts : 35
   Posted 3/30/2009 5:33 PM (GMT -7)   
hello. funny to read your question right now, as i'm on hold waiting to talk to a human regarding my SSI. I am 20 (21 next month!! woohoo!!) and receiving SSI - for the last two months. The website you should probably go to for your questions is There is a ton of information on that site. Reading the pamphlets I received about my SSI, I can tell you that there are programs where you can work while still receiving benefits. Obviously, you should get this information on the website. I'm still on my parents' insurance plan and don't know about medicaid. Anyway... I hope that helps. Even though SSI and SSD may not be exactly the same thing.

Sorry to hear you're not doing well. That's terrible about the hemoptysis. I know how shocking that is. I wish you well! See y'around!

we are all lying in the gutter, but some of us are looking at the stars.

New Member

Date Joined Aug 2009
Total Posts : 6
   Posted 8/10/2009 10:00 AM (GMT -7)   
Sorry to hear about all the troubles, but I hear you been there done that.  I just got on SSD in April and have been getting my check like clock work.  I was lucky because it only took me 3 months to be approved!!  Usually it takes many times 2-3 before someone can even be approved for disability.  I had all the qualifications though my hospitalizations and PFT's the whole works.  Believe it or not you might not even qualify due to your PFT numbers because they might still be too high.  Possibly you could maybe get SSI which is based on your income.  SSD is based on your physical being and the amount is the time you've put into work through the years.  Let me know what is happening I just signed up for this last night.  By the way I'm 29 and will be the big 30 next month so hang in there!

New Member

Date Joined Sep 2009
Total Posts : 3
   Posted 9/12/2009 2:01 PM (GMT -7)   
Hi.  I live in Michigan.  Here we have a program called "Childrens Special Health"  formaly know as "Crippled Childrens Coverage".  Even though the title says "Children", under this program, someone with CF is covered for life.  You may check out if your state has such a program.  Good luck to you.
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