Who knows what Dercums is and who believes it - its invisible

[Guest guest]

So, I was at my docs, we were almost done, and I had mentioned to the

doc that I had some wax in one of my ears that I needed some help

getting out, as my husband and I were looking into hearing aides.

So the doc had his nurse flush it out -ICK. But now its gone. Thats

the good news.

A couple minutes later i mentioned that I was hearing a lot more - hmm

what to call it - chattering in my ear. The doc and my hubby both

lookedup and said what are you talking about. So I explained out the

lovely lil noise that lives in my ears, now made even clearer by them

being cleaned out.

My husband continued to look at me like I was from mars, or is it venus?

I have provided both of these men with all of the information on DD

that is available to us on the internet.

Then I mentioned that playing on my son's Wii game, I had injured my

arm playing baseball. I threw a killer fast ball, but boy did I mess

up my arm. The doctor felt it and said, yes, it feels like the muscle

is swollen. In truth, there are lumps and bumps there that were not

5here before. Why can't they feel them? I can feel it.

So then I asked the doc for a referral to a pyschiatrist. I was quite

clear that I was not looking for a pain management person, but someone

who could help me accept the direction my life is going in. And will

continue goinin in until there is a cure.

Hubby says why you need that?? In truth, dealing with the fact that I

have a progressive damaging illness that will last until I die, is very

hard for me. I need some help. Most of my friends and family don't

believe it because they don't want too, or because I don't LOOK SICK.

Im sorry to ramble but I really got hurt today. So after 3 grueling

hours at the doctors office, and another 2 hours to get there and back,

when I got home I was exhausted. I was supposed to babysit my

grandbabies from 7 PM until whenever my son and daughter in law got

done with their party. I called, said can I cancell, I am exhausted.

She said let me call you back, my son wasnt feeling well either.

They called back and said could I come at 8 PM instead, they would have

the kids in bed. I agreed, its so hard for me to say no to them.

I got there, the kids weren't in bed, but gave me minimal trouble,

really. All is quiet. There I sit.

So - this is the good news. I decided to go Wii bowling. it is really

close to the real thing, only i can do it sitting down, and the " ball "

only weights as much as a remote.

I bowled a 245!! That was so awseome. My highest ever. Seven strikes

in a row. Wow.

I left it on the screen for my son and daughter in law to see when they

got home. I was soooooooooooooo proud of myself.

Well I waited and waited and waited, I had kinda figured my son and his

wife would return early, knowing how exhausted I was. They returned

around midnight. They oohed and ahhed over my game, and I got in the

car to come home.

We only live 4 miles away. I am exhausted. I will pay a big big price

for tonite. No one will believe that except you on this board.

Maybe I am being a baby. I guess i would just like to be appreciated.

And Believed. And Supported. Hubby hates it when I talk about lumps

or bumps or other aspects of the disease.

Ok My rant is over. I don't feel better but maybe I will.

Hugs/spooons/kisses//best wishes//fairy dust

Calle//Carin//AZ