Re: Where can I find some stories?

[Guest guest]

Hi,

A great new website is _www.mitoaction.org_ (http://www.mitoaction.org) The

website was started by the Mitochondrial Disease Action Committee (MDAC) in

Boston. There are a few glitches with the website currently, so if you have

trouble getting into it, click on " Public Awareness " and then all the options

should pull up on the lefthand side. There is a great definition of mito and

my story is on there under " Living with Mito " . Hope this is

helpful...remember, everyone with mito is different, but there are some

underlying similarities

which you may be able to identify with. Hope the website is helpful.

Malisa

In a message dated 2/5/2006 7:16:01 P.M. Eastern Standard Time,

semandyred@... writes:

I have been looking for awhile now for stories from adults with

mitochondrial disease. I cannot read for very long before everything

fatigues and becomes double so stories would be the best way for me to

learn more about this condition.

I have so many questions about things I experience like whether others

have cold hands all the time and feel their worst in the morning.

Maybe there are things that I am doing that contribute to this or

things I can do to make them better. Those are just two of many

questions.

Like I said, reading stories, histories, etc. might be the best way for

me to answer some of these questions as searching is tough for my

eyes. I was hoping to find some stories under the stories section of

this site but there are none there. Does anyone know of any other

sites with some I could read? Thank you in advance.

[Guest guest]

I believe the UMDF website has an area of stories. They are probably

mostly stories of children with mito.

Cold hands is not unusual, but this can be caused by other things as

well as dysautonomia. Have you had a fasting blood glucose level

drawn. That could be a reason for feeling worse in the morning. Again,

there can be many causes. I'm not a doctor, so this is just my

understanding.

laurie

> I have been looking for awhile now for stories from adults with

> mitochondrial disease. I cannot read for very long before everything

> fatigues and becomes double so stories would be the best way for me to

> learn more about this condition.

>

> I have so many questions about things I experience like whether others

> have cold hands all the time and feel their worst in the morning.

> Maybe there are things that I am doing that contribute to this or

> things I can do to make them better. Those are just two of many

> questions.

>

> Like I said, reading stories, histories, etc. might be the best way for

> me to answer some of these questions as searching is tough for my

> eyes. I was hoping to find some stories under the stories section of

> this site but there are none there. Does anyone know of any other

> sites with some I could read? Thank you in advance.

>

>

>

>

>

>

>

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>

>

>

>

>

>

[Guest guest]

I've toyed with writing my story, in fact at one point I even thought I'd do my

own little community-access public TV show. I thought people might like to know

a few things, facts that especially come out with something mysterious like

mito. For instance:

1) Just how sick one can be and yet look " OK " or close to it. And still have no

diagnosis and no real medical help.

2) Just how broken the health care delivery system is, in the USA.

3) Just how screwed up is the approval system for social security in the area of

disability.

But then I look at the piles on a table next to my computer. One pile for each

category. There's a pile for test results, another for doctors (two piles

really, depending on whether I expect to see that doc again), another for SSDI,

another for health insurance, another for disability-related tax issues, you get

the idea. Then I look at my medical log, a 7-page Word file that's a

chronological summary of everything that's happened to me medically, just a

brief description for important events, appointments, medications, and test

results, in columns for date, doctor, symptom, result. Then I look at my summary

of symptoms and " positive " test results, two pages of line items. Finally, I

glance over at my library, a bookshelf containing a few medical text books and

many folders with printouts and copies of medical journal articles.

I'm doing all this just to " tread water " so to speak. Problem is, it's

exhausting, and I don't have much energy in one day, and I'm never really caught

up. So as I said, I look at all my piles and documents, and the thought of

writing any more just sort of passes..... :-)

Steve D.

From: semandyred

To:

Sent: Sunday, February 05, 2006 6:03 PM

Subject: Where can I find some stories?

I have been looking for awhile now for stories from adults with

mitochondrial disease. I cannot read for very long before everything

fatigues and becomes double so stories would be the best way for me to

learn more about this condition.

I have so many questions about things I experience like whether others

have cold hands all the time and feel their worst in the morning.

Maybe there are things that I am doing that contribute to this or

things I can do to make them better. Those are just two of many

questions.

Like I said, reading stories, histories, etc. might be the best way for

me to answer some of these questions as searching is tough for my

eyes. I was hoping to find some stories under the stories section of

this site but there are none there. Does anyone know of any other

sites with some I could read? Thank you in advance.