Laurie--Ignorance of mito around us...

September 27, 2004

Hi Laurie,

After awhile we do fall back on not responding to people asking us how we are

feeling. At different points I attempted to better explain to people what

was happening with me. It really surprised me that even my closest friends and

my own siblings didn't take the time to learn more about it. They accepted

that I was sick, which I am grateful for. That in itself was a big thing.

I have been sick for 25 years. I didn't know about mito. The first six

years, I went without a diagnosis, and doctors suggesting maybe my fatigue was

from

depression. I was diagnosed with CFS/FM after the first 6 years.

It wasn't until 2002 that I stumbled upon an article about fatty acid

disorders written by Dr Ampola the Director of the Metabolic Clinic at the NEMC

in

Boston. I called her and told her the symptoms sounded familiar. She answered

her own phone and had me come in the next week. She ran all the blood work

and questioned me about my symptoms and family background etc. and then said

she thought I sounded more like a mito disorder.

But whether I thought I had mito or CFS, still there was no effort made by

anyone in my family or friends to actually find out more about the condition.

No one ever did research. My spouse was the only one who really got involved

in really wanting to know what was going on with me and made the effort to try

to understand it.

I do have to emphasize though, that even without understanding it, I had

support. My mother and siblings and children and spouse and one friend didn't

doubt that I was sick. Actually when I think about it, the problems I have had

have all come from the medical community and not my family and friends.

But I meant I think it is confusing because of the nature of mito. You are

disabled, but you are not. You can walk, but it is limited. You can go past

your limits if you decide to and pay for it later. You can look as normal as

the next person. You can have doctor visit after doctor visit and have normal

test results. At least in the early stages. Maybe even in the later stages.

I would wager that even to most of us, mito doesn't make sense. I think it

is hard to describe Mito suscinctly.

Adam

In a message dated 9/27/2004 7:32:59 PM Eastern Standard Time,

writes:

> Adam

>

> I think that we are often part of the problem when dealing with those around

> us. We give off the message that we are doing fine, because that is what we

> would like to feel. Also, for us, we might not be feeling any worse, so we

> say fine. We push ourselves to have a life, and others see us as " normal " . We

> also know that others don't want to hear our woos every time they so us, so we

> say fine. I think this list allows us to vent when needed, so we are more

> able to deal and then also appear " fine " .

>

> Just a thought. What experience have some of the rest of you had in this

> respect?

>

> laurie

>

September 27, 2004

I agree with you , Adam. Other than my father before he passed away in March, I

am the only one in my family that has taken the time and effort to know as much

as possible about the disease that has afflicted so many in my family. However,

2 mos ago when we moved into our new home, our neighbors across the street

introduced themselves to me and we eventually ended up in a discussion about

MELAS. A couple of days later the husband came over while I was working in the

yard to express his sympathy, concern and support to me and my family. He and

his wife had looked up MELAS on the internet and read about it! Also, my church

is very supportive of us. If only I could get my family in this mind-set!

Sometimes, blood relation doesn't always mean family...

Caroline