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CML-disability


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#1 Teresabourgeois

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Posted 09 July 2011 - 04:02 PM

Question?

I applied for SSDI in May.  I received a phone call from the state saying that he did not have enough documentation to make a decision so they wanted me to see their Dr.  I assumed that he meant a oncologist but was told a phycologist.  Lord knows I'm nutts!  Has this happened to anyone else.  I've researched it and it seems that this could actually help my case.  Especially with the side effects of the sprycel and fatique, memory, etc.  I just hope I remember to go to this appointment...:)  Wonder what I should wear?    



#2 Susan61

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Posted 09 July 2011 - 09:34 PM

Hi Teresa:  I have no idea why they are sending you to a Psychologist.  They do some weird things no matter what state you live in.  They do not make it easy for you to get approved, and if that happens do not get discouraged because it happens to about 80% of people.  When I applied, they made me go get a check-up with their doctor who was not a Oncologist.   I had a history of back trouble, and that is all he talked about.  He even made me get a back x-ray right then and there.  If I had thought it through I would have said something.  It was so new to me, and had no idea what  the whole process was.  He only touched on my CML slightly in our conversation.  This could help you.Just give him a ear full of everything your feeling to show why you feel you cannot work.

I hope all goes well.  Let us know how you make out with your appointment.

Susan



#3 SunNsand

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Posted 09 July 2011 - 11:29 PM

Yes I had to have a psychological and physical exam. I have a diagnosis of depression so that's probably why I also had a psych exam. Just be honest and answer their questions. What I found difficult was that they would ask a question and then they wouldn't let me finish my sentence. They seemed to only want yes/no answers which wasn't always appropriate in some instances, so I feel like they didn't get the real picture. Your experience will probably be different. Just be yourself and try to express the problems you have.



#4 Teresabourgeois

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Posted 10 July 2011 - 11:19 AM

Thanks !

I am quite nervous about this appointment.  I'm worried that since the State is paying him that we is working on their behalh (not mine)  I too have a history of autoimmune disease so maybe they just want to see how fried I am.  I'm considering looking my very worst on that day.  Seems like I've had alot of health care people make comments like "your to pretty to be sick"  What the heck does that have to do with CML.  Do they think that only unattractive people get sick.  It amazes me when someone says that.  But not to worry because I wake up looking pretty bad everyday.  The trick is smoke and mirrors.  So on this appt. day....no mirros or makeup or hair pieces.  I'm gonna WIN this for the rest of you and myself.  If folks with fibromyalgia can win a disability case with NO supporting dx or labs, we shouldn't even have to fight.  Wish me luck and I will update.

Question:  Did you both get denied the 1st time?



#5 SunNsand

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Posted 10 July 2011 - 12:20 PM

I applied on my own the first time and they determined I could work part-time. I applied for an reconsideration on my own, and they determined I could work part-time but not do the same type of work I had done in the past, which is mostly office work. I have an appt. with an atty tomorrow for a final push. I did have other medical problems before CML so we will see how it goes!



#6 hannibellemo

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Posted 10 July 2011 - 07:15 PM

Hi, all,

I have a question about disability and insurance, etc. If you go on disability and no longer have a job or insurance how do you afford your medication (#1) and other medical expenses (#2)?  Does your spouse have insurance? I just can't see how that would work otherwise. I seem to be having a "duh" moment, what am I not understanding here?

Thanks!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#7 Susan61

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Posted 10 July 2011 - 11:17 PM

Hi Pat:  I can only explain how it worked for me.  I was working when I got diagnosed with the CML.  I was doing the old fashioned  Interferon shots everyday with the Ara-C shots 2 weeks a month along with the Interferon.  I could not function anymore, and I was put on temporary disability.  Then they were pushing me for the BMT, therefore, I ended up on Permanent Disability.  Then I was in the clinical trial for the Gleevec, and then everything else just piled up with my health issues.  When I got the Permanent Disability I could have picked-up Medicare for insurance, but I was under my husbands insurance.  So I got my Disability, but my husbands insurance pays for all my medical needs.  Now when he retires, I will have to pick up the Medicare.  I dread that when I see that they do not pay much of anything. I never had insurance with my job.  I was always on my husbands plan, and still am.

The other thing is that when you go on Temporary Disability, you also fill out all the forms for the Permanent in case it goes to Permanent.  This way it just moves right into the Permanent.  I never thought I would go on Permanent Disability, and never filled out the other forms.  I had a waiting period after I was approved for my Permanent Disability because of not doing the forms.  I had no income from me for months, and we were just struggling along with my  husbands income until it all got resolved.

     Everybody has a different situation.  If  you have a job with benefits, then you are covered well your on the Temporary Disability which I think was 16 weeks.  Its been so long I do not remember.

    Someone else may have more information that is up to date. Hope I did not confuse you even more.

Susan



#8 hannibellemo

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Posted 11 July 2011 - 05:39 AM

Hi, Susan,

I can definitely understand how someone would need to be on temporary or permanent disability. I just didn't/don't understand how anyone could afford it with our disease without someone else holding the insurance. Thanks for sharing how it works for you.

Medicare is scary, isn't it?

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#9 Teresabourgeois

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Posted 11 July 2011 - 09:22 AM

Hey Pat,

The disability I have applied for is Social Security Disability.  I stopped working due to CML.  I did not have insurance with my job either.  I have always been covered on my husbands. But you are so right about this is not going to be easy.  Especially when I've been told it can take up to a year for SSDI to make a decision.  It's a tough decision to make to even fight this process.  Somedays I wake up and think, I am fine and should get my butt up and go find a job.  Then other days it the complete flip flop.  I'm sure you know what I mean.  Good luck!  



#10 Susan61

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Posted 11 July 2011 - 10:32 AM

Hi Teresa:  I hope this gets resolved for you quicker than a year.  It all depends on how that first visit goes, and what they document in their findings.

My job was tedious and on my feet a lot.  A lot to remember.  I was doing the job of 3 girls in a medical office, and when I went out on Disability I found out they hired 2 girls to replace me.  I was a fool to do all I did.  I should have insisted on more help.  It really depends on how much demand is put on you in whatever job you have.  Some people have been able to maintain their positions and continue to work, but so many have said the fatigue etc. was just wiping them out.

Sometimes your better off just getting the disability, then to risk losing your job all together due to not being able to function in your position.

Its up to the individual.  With me I will be 64 years old pretty soon, and I have developed other problems that I am constantly addressing.  I know I could not work anymore.

Susan






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