28 replies to this topic

[TomL]

Well, the Social Security Admin denied my disability claim. It was based on my two oncologists statements that I can walk. One has not seen me since the date I first became, in my opinion, unable to work effectively except from home or with a VERY understanding employer (fewer of those around -- my last one fired me soon after I started Gleevec -- pretty expensive, you know). The onclologist I have now is the VA doctor, and they have a vested interest in me not being "disabled" as I have a claim in with VA, too. Before I started the fatique, I travelled about 95% of the time. Good money, hard life. I took a cut in pay about 65% to take a job with no travel. Fired soon after.

[TomL]

This unexpected error stuff makes this website all but unusable. This is really, really pathetic. If it was not free, I would cancel.

[TomL]

What do I do? I have been very honest with all prospective employers about my condition and how it "may" affect me work-wise. This is not a very good way to get a job, but I cannot imagine getting past the 90 probation period if I hid the fact. For a 64 year old who can count on one hand the total number of days missed from work due to illness or injury in almost 5 decades of work, this is a totally new world to me. My poor wife suffers through all this, and I feel like a horrible provider.

[TomL]

Isn't it funny how the "Unexpected Errors" will not post, but they count as a post every in counting "every thirty seconds"? This is insane. Maybe we could get a real programmer to volunteer their services to this site.

[TomL]

Heck, I am not a provider at all any more. The latest side illness, pneumonia apparently, has REALLY put me on the sidelines. Twice now while my poor wife was next to me, I had coughing attacks and passed out (cough syncope) and freaked her out. The last one was in the waiting room of the lab when we were waiting for HER blood test. I turn red, face and hands swell up, eyes roll to side until pupils not visible -- Freaked out the ten people in the waiting room.

[TomL]

I have just never seen a website as incapable as this one is. This is such a necessary site and to have this level of un-usability is really sad.

[lkbanks]

I feel your pain.Every time I try to post I get error

[lkbanks]

I get mad because I know people that are on disability that I know can work.Good luck with your fight.

[TomL]

How did you guys get a post?

[TomL]

Does someone or some organization pay for this site? They need a refund and a new site.

[Goldfinger]

There's all kinds of people in this country that can work but get a disability check.  It's all part of a big racket involving the "patients",   lawyers,doctors,etc. In this country a lot of people feel as though they  are entitled to a gov check for the rest of their lives,for doing nothing. Of course we -  the taxpayers get stuck with all the billions being paid out yearly for  this fraud.

[TomL]

I do not tell her about the episodes I have when she is not around, she would really freak. Waiting for appointment next week with pulmonologist and results of Valley Fever blood test. This has to be more than just what most describe as fatigue, shortness of breath side effects of Gleevec.

[TomL]

But no being able to start my full social security two years early and probably being denied by VA is really getting me down. I actually hope no one reads this, I sound like such a wimp.

[TomL]

The frustration is just getting extreme. There are so many Vets I have located with CML who have all been denied disability; and so many children of Vietnam Vets who have developed CML at younger than normal ages; and so many Widows of Vets who died with CML/AML who have been denied.

[TomL]

And you compound that with the fact that VA recently added Type II Diabetes and IHD (Ischemic Heart Disease) to the list of Agent Orange presumptive diseases -- meaning any Vietnam Vet who has either Type II Diabetes or IHD automatically get disability. Those are THE two MOST common LIFESTYLE deseases in men IN THE WORLD! If I gained a lot of weight or smoked, I would probably qualify for VA Disability. But merely having CML is not worthy. (I have not been denied yet, but to my knowledge no Vet with CML has ever been approved except Gulf War vets. Their chemical exposure qualifies, but Vietnam Vets does not. Hmmm, it pays to fight in a popular war.

[TomL]

Now I am sounding both pathetic and bitter. I am honestly not normally a pessimist nor one who feels sorry for himself, but getting that Social Security denial yesterday made it impossible to get any meaningful sleep last nite. Oh woe is me (he throws the back of his hand to his forhead and closes his eyes).

[TomL]

Sorry, you guys. You deserve better of me, but I just had to get it off my chest. I apologize sincerely. Tom

[CallMeLucky]

Hey Tom,

I don't have much to offer in the way of advice on this issue, I fear everyday that I will be in a situation at some point where I won't be able to work or I will lose my job and not be able to find another one.  I am the sole provider for my family, I have a wife and two little boys.  Full mortgage and everything that comes with it.  I just try to put it out of my head and deal with it if/when it comes.  I realize that for you it is your current reality and I can appreciate how tough that is.  I wish we lived in a better world, a fairer world.  So much just isn't right, from getting sick in the first place, to losing everything you worked so hard for because you got sick.  No one really gets it until it happens to them.  I'm sorry you are having such a tough go at it.

With regard to the job, there are a couple of things.  First note, that I am not a lawsuit happy kind of person, I believe the system is riddled with abuse, but when you talk about an employer who fired you because your medication is too expensive, that deserves a consultation with a labor attorney.  Businesses are not allowed to fire people because of their health or because they cause their insurance premium to go up too much.  So you may want to pursue some recourse there.  You are not being petty, so one did something illegal to you, you have rights.  As far as perspective employers, you should absolutely 100% not discuss your situation with them.  Let's be realistic, there are plenty of candidates out there, and as much as we would like to think that people are decent and would not factor in something they are not supposed to, there is no way someone is bring you on board if you disclose upfront your situation, or at least it is highly unlikely.  I say you put on your game face you interview hard get the job and do your best.  Once you are hired you can have a talk with HR about your special needs.  If they fire you, you have recourse.  I will suggest that you are probably better off with large organizations than small businesses.  I do not know what kind of work you do, but I know that working for a very large company has been better.  My immediate manager is willing to work with me and my hit to the company insurance plan is not really noticeable given we have so many employees.  So I would look at larger companies.  Larger companies also have policies in place and are better prepared to deal with individuals with special needs.  They understand the law better and just deal with it better.  When you are dealing with a small business owner, they are watching every penny and if you are a big cost to them, they are going to look for way to get you out of there.

With regard to the website, it is unfortunate - a lot of people rely on it.  I feel bad for the new people who are just diagnosed and come here looking for help and don't get it.  The site was working fine before the "upgrade".  If nothing else I hope LLS learns from this experience.  You don't upgrade to a new version you haven't tested, especially if there are big changes that have not had the bugs worked out, and you always have a roll back plan for situations like this.  They should have rolled back to previous state the first day when things looked as bad as they did.

P.S. you are obviously no wimp.  There's a certain kind of courage you can't describe that men like you who served their country in battle have.  I appreciate it, and I know many others do as well.  Never feel like a wimp.

[katherinef]

Hi Tom -- sorry for all you are going through.

Most people are denied the first time around with SSDI.   It's a terrible system.   I was 60 when I applied -- was denied -- but was approved the 2nd time around.   You need to have your oncologist advocate for you -- and I hope he/she will.   SS will deny you claiming you are in remission -- but you need to stress that you're disabled due to the side effects.    I wrote to my Senator for help -- told him/his staff how outraged I was and they fought for me, too.  I advise you to do so.   I hired an attorney but soon fired him as he was doing nothing -- he would get a percentage of the retroactive pay settlement, so it benefitted him to stall.

So -- get fired up -- contact your Senator, Congressman, whomever.     Get your doctor fired up for you -- usually these oncologists have social workers on staff -- get him/her involved.    I called my doctor's office regularly to make sure that my paperwork got done.    

And have faith -- you will get approved -- it just isn't easy.

good luck

Kathy

[Tedsey]

Sorry Tom.  I have nothing to add.  I hope things get better for you.

Teds