To file or not file...

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To file or not file...

Postby Stacy » Thu Jun 07, 2007 10:19 pm

Hello everyone-

I'm new here so let me give you a brief account of my story and then I'll get to my problem.

I have bilateral lower limb lymphedema that was diagnosed when I was 5. My LE wasn't bad until after the birth of my children (19 and 17 now). I've dealt with doctors that didn't know anything and didn't care to learn, with docs telling me I knew as much or more about LE than they did and one who told me I had to learn to live with it (I was in my 30s at the time and had been living with it for 25 years. He's lucky I didn't punch him). I wore a compression garment every day from 1st grade to 6th grade until I completely balked after one too many questions in gym class. I've used some type of compression off and on over the years. I've had MLD before and am undergoing treatment currently. I just recently spent three weeks in the hospital with my worst bout of cellulitis ever in April. I spent almost a week in ICU as I was septic and came close to dying. The silver lining from that infection was that I lost the top layer of skin from the toe to the knee on both legs and in the process lost over 90% of the hard, gray dry skin that had plagued me for years. To add insult to injury, my youngest daughter has LE as well that started in her left leg about 6 years ago and just recently spread to her right.

I have often thought of filing for disability but have been reluctant to do so.
I am as active as my LE allows me. I can do my own bandaging and massage. I can drive and walk my dog (on hold while I'm in bandages. It's 90 degrees and climbing here in Texas. I sweat enough in the AC.) I can bathe and do normal self care. I teach CPR for Girl Scouts and Red Cross, go grocery shopping and go to church every Sunday. I'm not currently working, but it's by choice. In short, I don't feel disabled. I suppose that while I have indeed learned to live with my LE and know what kind of accomodations I have to make to be active, I'm not willing to take this step. I've grieved for the things I can't wear or do. I'm trying to support my daughter and help her adjust. I'm just not sure I'm ready to admit that I am disabled.

My therapist thinks I should file, the folks at the hospital think I should. I'm sure my primary would agree as well. My husband thinks I should, but I've fought insurance companies and uniformed doctors often enough that I cringe at the thought of taking on the government.

Any thoughts out there?

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Joined: Wed May 30, 2007 1:25 pm
Location: Texas

Postby patoco » Thu Jun 07, 2007 11:04 pm

hi ya Stacy :)

Well to our family here :!: :!:

I can totally relate to what you are going through. Despite bilateral LE, I had an incredibly active life and learned too the acommodation necessary for the lymphedema. Never ever had to depend on anyone for anything.

That has changed in the last several years as my health has declined due to the addition of a couple lymphomas. Last year the bottom really fell out and I'm facing major changes....resisting them all the way.

Usually, when a doc sees me, they ask (1) what did you use to do for a living and (2) you mean you can actually walk on those legs?

Getting a disabled parking permit was like a major concession for me.

I'm still working at this point - almost 50 hours a week at a job that is almost 100% stress.

I hate thinking of myself in terms of being disabled. For me, it almost seems like a surrender to LE. yet, in reality it isn't. Acceptance doesn't mean you have to surrender. Acceptance means "ok, I am disabled and how do I go from here?" Tough, tough thing for this old lympher to learn and even tougher to accept how limited I have become in terms of being able to do things.

On the disability, I would say, yes. Go ahead and file, though you're right, it is going to be a long and frustrating battle. There may come a time when you need the resources (like those hosopitalizations etc) and it may mean a real difference in helping you to have a quality of life.

Feel like I'm rambling as I have such mixed reactions and I feel like :roll: I'm talking to myself too. I've got a get off my duff and do the same thing. LOL...a there is a Social Security building right next to our office building.

Talk to your doctors, see what you need to put together and go for it.

Hope this helps :?: :?: :?:


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Postby truckdriverwife » Thu Jun 07, 2007 11:21 pm

Hi Stacy

Hun with todays economy money is money and if your child needs help extra income helps i dont know what the guide lines are there in texas but here in california if youve suffered with the same medical condition for 3 plus yrs you can get SSI which i get because im unable to work it make me feel worth something that im at least able to contribute to the family finanially my ssi covers our rent and some groceries and my s/o gets everything else dont think of social security as youre disabled think of it as helping the family with the extras if you can get apply which also means you should be able to get medicare also i get both medical and medicare what one wont pay for the other will apply itll the family not make you disabled your desease has already done that no mattter how active you are im sooooooooooo jealous at how active you are im partially bed ridden i use a walker and a wheel chair and when taken to the drs im transported my gurny ambulance
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