Anybody who is broke and has this condition?

Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

Anybody who is broke and has this condition?

Postby RobinC » Fri Jan 12, 2007 6:25 am

I was recently diagnosed but have known "something is wrong" for 5 years, and have seen provider upon provider with no results. It was finally an OT I was seeing for another problem who sent me for a diagnosis - bilateral lower extremity LE. According to the docs "it isn't that bad" and "it's confined to the ankles" and "it's a result of weight gain" on and on ad nauseum. The therapist says beginning stage two.

I recently lost my job because my boss has a kid who dropped out of school that he wanted to put in my position. Being the owner, he did that. I then qualified for state aid (medical) and my therapist dumped me because reimbursement is inadequate.

I know my condition is bad, getting worse. I have seen a few of the faces of ignorance of this problem. No one knows "what caused" mine, so the therapist referred to it as primary LE and the CV doc thought it worth six treatments.

Anybody else start out broke with this disease? Because it appears if you are broke, you are dead (meaning you can't get treatment, or can't get adequate treatment). I don't have compression supplies, other than what I picked up in the drugstore before my diagnosis because I had to do something to make walking possible.

I find it a conundrum and not worth getting out of bed in the morning. This is a statement of practicality more than an indicator of depression! If I can't locate treatment I will be looking for the proverbial corner to crawl into and die. With my luck, that won't work either! (that is a joke, albeit a poor one)

My question is: anybody else start out broke with a diagnosis? From the level of expense to treat this, I am sure many are closer to being broke now than when they started. But, did anybody start out with a diagnosis and an empty pocketbook? What did you do?

I have one advantage - a motorhome and freedom. So if there is some panacea somewhere, I can go.

Wow - what a post. Input appreciated.
RobinC
 
Posts: 3
Joined: Wed Oct 18, 2006 2:49 am

Postby patoco » Fri Jan 12, 2007 9:24 am

Hey Robin

Super welcome to our family, although not happy to hear of your situation.

Yes, there are plenty of us out there who are broke and have LE.

Even for those of us with jobs and insurance, it is still so bloody expensive, most can not afford what they really need.

That therapist who dumped you was a jerk for doing so and I would look for another therapist. Discuss your situation with them.....I know many therapist who are more then willing to help.

Also, some of the garment manufacturers have special programs to help too, so you may want to contact them.

I just posted some illustrated pages on lymphnode stimulation, self manual decongestive therapy and leg bandaging/wrapping on my blog

Lymphedemaville

http://journals.aol.com/patoco2/Lymphedemaville/

You may want to take a look at those...might have some helpful ideas.

Look forward to getting to know you and if there are any questions, please don't hesitate to ask.

Pat O
User avatar
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Postby RobinC » Sat Jan 13, 2007 11:15 am

patoco wrote:Hey Robin

Super welcome to our family, although not happy to hear of your situation.

Yes, there are plenty of us out there who are broke and have LE.

....
Look forward to getting to know you and if there are any questions, please don't hesitate to ask.

Pat O


Thank you for the reply and the welcome, Pat. I did write to and get a reply from the NLN and have placed a pc to the local support group here. I started contacting garment manufacturers and continue to pursue the insurance.

I do have a question. Seems I am "missing" something, as I hear much talk about the "choice to treat" LE. My understanding is, this is chronic and progressive, and even if it isn't that bad now, it can only get worse and be more difficult to treat later. If you get toxic enough, you die - right?

I don't understand how you can "choose" to not treat LE. :?:
RobinC
 
Posts: 3
Joined: Wed Oct 18, 2006 2:49 am


Return to Welcome Family

Who is online

Users browsing this forum: No registered users and 4 guests


cron