Re: They don't get it....a

[Guest guest]

Hi a,

You're right that trying to explain a rare disease is difficult--

there is nothing anyone can compare it to, and some people tend to

think it is just made up. Now that the swelling has moved to the

point of being visible, then I get comments like " oh, my uncle had

some lumps like that and he lived to 100! " Of course, it just HAS to

affect places that fat likes to accumulate--waist, abdomen, butt,

thighs--making it appear even more that I'm just fat.

Our group may be coming up with a t-shirt that reads " I'm not fat, I

have Dercum's Disease! "

Taking care of 4 little ones can be a challenge, but I am the only

grandma they ever see regularly, and I want them to have a positive

memory. was 6 when both her grandmas died within a few weeks

of each other.

Just as an update, I just started yet another " experiment " --Procardia

to see if it will affect the bloodflow to the tumors. He says if

that doesn't work, he wants me to try Viagra---LOLOL!

Thanks for the hugs!

Judi

[Guest guest]

Hi a,

You're right that trying to explain a rare disease is difficult--

there is nothing anyone can compare it to, and some people tend to

think it is just made up. Now that the swelling has moved to the

point of being visible, then I get comments like " oh, my uncle had

some lumps like that and he lived to 100! " Of course, it just HAS to

affect places that fat likes to accumulate--waist, abdomen, butt,

thighs--making it appear even more that I'm just fat.

Our group may be coming up with a t-shirt that reads " I'm not fat, I

have Dercum's Disease! "

Taking care of 4 little ones can be a challenge, but I am the only

grandma they ever see regularly, and I want them to have a positive

memory. was 6 when both her grandmas died within a few weeks

of each other.

Just as an update, I just started yet another " experiment " --Procardia

to see if it will affect the bloodflow to the tumors. He says if

that doesn't work, he wants me to try Viagra---LOLOL!

Thanks for the hugs!

Judi