And from the 'life isn't fair' department...

[mtlieb]

So...

I was getting a ride to my latest doctor's appointment last week when my young driver started telling me all about how physically active he is and all the sports he likes to engage in. The guy is definitely in great shape to be sure. Dang! He kayaks twice a week, plays hoops with his buddies, jogs, works out at the gym every day, lifts weights, etc.

When I asked him how he finds the time and money to do all this, his response was: "Oh... I'm on SSI Disability. I have a back problem that prevents me from sitting for long periods of time, so I can't even get a desk job."

This would be the same guy who was sitting next to me in the vehicle driving me to my doctor's appointment, which he does under the table and admits to putting 300 or more miles a day on his car. And unless I'm mistaken, kayaking involves a bit of sitting as well, for long periods of time, in a tiny little boat while paddling through rapids.

I was livid folks, and not for myself, because I've been fortunate enough to be granted a bit of reprieve from my HCM symptoms and am finally finishing this degree i started 4 years ago. No, I'm livid because I have friends on this board who have been struggling with SSI for years, and several have died waiting to get on it. One died in a hospice unable to bathe or feed himself but was told by SSI right up till the end that he could 'get a desk job'.

To add insult to injury I asked this joker (and I'm sorry I did) if it was difficult getting on SSI. His response was: "No it was the easiest thing in the world. Social Security loves 'back' problems. You can see it on an x-ray and the physical exam was a piece of cake. I filled out my application, it was approved immediately, and I got my first check six months later." No hearing, no nothing.

So much for HCM. You can't see it on an x-ray and you can't fake your way through an exam. If they don't 'see' it... they don't 'believe' it. Nevermind that you sometimes can't even get out of bed in the morning. SSI is for those with the disabilities that you can see and feel.

Jim

[Rainey]

WOW! That is absolutely infuriating. I'm sure that there are a ton of stories out there just like this. Sad. Very sad.

[kayjaykjt]

Welcome to the world of our society; unfortunately.

[Lisa Salberg]

We have serious problems in this country - those in need cant get it, those who know how to play the system are rewarded and many of us try our hardest to work and be productive,even on days when we would rather not.
One other item here - there are people who would like the kind of work this man is doing "under the table" and actually pay taxes and contribute to society.
Mean while this joker is collecting OUR money - earning "free" money and not contributing to the system at all.

VENTING now complete...
Lisa

[Midge Rollins]

Exactly where the saying comes from is from that type of person.

[mbcube]

I have to chime in on this subject. My bro-in-law is a Vietnam Vet, has MS and a bad back. He's been denied over the past 5 years! It make me livid to know that some folks get away with this crime - and please know - it it a crime!

Second story - Another bro-in-law (wifey's side - He's ex bro-in-law #12) was on SSI. He did have a bad back but it healed. His now ex-wife sent video's of him to SS hangliding, dancing, mechanical bull riding and oh yeah, a rather active in-bed movie with his new girlfriend (now you know why he is ex #12). They cancelled his SSI and made him pay back several years worth. Drawback was in florida, my sister-in-law was force to help pay this back!

So much for karma!

[Patricia M]

I just signed up and was diagnosed with HCM august 2007 and went into arrest during stress test Sept 2007 and implanted 2 days later. I can't figure out how to correspond with members on this site. I have lots of questions and would LOVE to talk to other members. HGow do I do that? I just picked your "Thread" because I liked what you said. Found it amusing and interesting. Does anyone else have one glass of wine and have their heart freak out two hours later? I take Metropol 50 mgs day. Patricia M.

[Reenie]

Hi Patricia. I'm sorry you've had such a rotten run of luck lately. To answer your first question, at the top left of each forum is a button labeled "New Thread" which is what you need to choose in order to start your own topic. You should do that and introduce yourself. :) Secondly, you aren't the only one with an intolerance to alcohol. Some, but certainly not all, with HCM seem to be hypersensitive to the effects of alcohol on their systems. Have you called the HCMA office yet or seen a specialist?

[gfox42]

Hi Patricia,
Regarding alcohol, we had an exchange about this a few months ago -- see http://www.4hcm.org/forums/showthread.php?t=13356&highlight=alcohol (http://www.4hcm.org/forums/showthread.php?t=13356&highlight=alcohol) -- and as Reenie says, it seems clear that some people are quite sensitive and others less so.

Now that you know how to start a thread, I hope you're able to use this board to get more info and support. And I'll second Reenie's other comment -- it's a good idea to start with a thread on the "Hello! My name is" forum.

Gordon

[MissyH]

Can't even vent about this one anymore....had to take a deep breath years ago and just let it go.

[caroline]

I have to say that I have been on SSD for 21 years and at times I have been rather active and people looking at me would have wondered if my disability would really be warranted. But, in fact I have insulin dependent diabetes, a tethered spinal cord and multiple birth defects, an ostomy bag, and now it turns out long-term severe sleep apnea, which is why I can only look reasonably peppy for 5 hours at a time. Also, I have a pretty bad case of HCM and have bad shoulder impingement plus bone spurs. My misplaced jaw creates very severe apnea and also creates hearing problems, ringing that drives me mad and bouts of hideous TMJ.

I think a lot of people think I am probably a disability cheat---because the reasons I am disabled are not obvious and not easy to explain and I make a halfway decent impression. And when I am having a few good months, I don't appear disabled. When I'm doing badly I am at home and out of sight. People envy me my leisure time, but I don't think anyone would actually trade with me and have to endure the 59 major surgeries I have gone through.

So, no I don't know that we can have a disability system that could serve someone like me without also allowing some bona fide cheats to sneak through. This is just a fact of life. The system really can't figure us all out to that extent, and many people are out there dragging around with conditions such as mine that have not been diagnosed. I waited 3 years for my benefits to come through in the 1980's and had a hearing. The reasons for my problems were not clear and at that time I was a mystery case, but I did get my benfits then and have collected them for 2 decades since.

For those of us with disabilities that can't be seen, we have to count on a certain amount of give in the bureacratic system to get by. I'm not saying that it is fair that jerks run around bragging about how they take advantage of a problematical system---------- But I do think it is in the nature of things.