Re: Re: Family Support - Or Lack Thereof - Judi

[Guest guest]

Hi Judi,

You always crack me up! I am going to the store to lay in a supply of 2 x 4's.

Thanks for your

insight. I have never thought about showing my prescriptions to my family to

explain what they are

for and what the side effects are. That is now at the top of my list to do. Big,

big hugs to you.

Iris

--- nonny46 <nonny46@...> wrote:

> Hi Kim,

>

> I sure do understand where you're coming from! My family consists of

> my husband (who has Parkinson's) and a married daughter who has a 4-

> year old son and 17-month old triplets. When we found out Ron had

> Parkinson's 2 years ago, our daughter was pregnant with the triplets

> and her comment was " I don't need another downer right now. " (she

> has since changed her attitude.) During that time I still didn't

> know what was wrong with me, but later found out that I had Dercum's

> Disease, which is a rare autoimmune disease similar to fibro but with

> the addition of hundreds of painful lipomas all over my body.

>

> I finally had to sit my daughter and her husband (who seemed to be

> WAY more understanding) down and explain to them just what the limits

> of my capabilities are--that I don't look as sick as I actually am,

> that just because I smile and laugh and still have a pretty " up "

> attitude doesn't mean I can do everything I used to do. I can't

> always watch the kids at the last minute,unless it's an emergency,

> and most likely not in the evening because I'm a total vegetable by

> then. I showed them my prescriptions and what they alone do to me

> physically and financially. I think I got the message across,

> because they are now volunteering to do things for us!

>

> I wrote a letter to friends explaining my disease as most had never

> heard of it, and why I now use a cane, why I can't volunteer at

> church as much as I used to (I do different things now that don't

> involve as much running around) and only get a few weird suggestions

> of how I should treat this disease. I just smile and thank them.

>

> You know best what's best for you, and sometimes it's just a good

> scream or cry or laugh, but sometimes you just have to tell people

> straight out and not mince words. If they're too dumb to understand,

> hit them with a 2x4!

>

> Judi

>

>

>

>

>

>

>