Re: For Kira, for Adrienne, for Dawn, for Mr. Mohan ---for All of Us

[Guest guest]

Dear ,

Thank you very much. I agree that posting Kira's picture was the most

wise thing to do. As the old saying goes, one picture is worth a

thousand words.

It seems to me that Dr. Boles is your only ace in the hole, so to speak.

What each and every mito patient needs is a proactive doctor on their

team. A person who is willing to stick his or her neck out; who is

willing to buck the entrenched medical establishment. I do pity many

wonderful doctors, because they are so afraid of being sued. A close

family friend, a surgeon, left his practice to teach anatomy at his ivy

league med school because of that factor. He has nine children. One suit

could have taken even his rather humble house. And I know that he

charged very little, and even donated his time on a regular basis in

Haiti.

I think the time for tort reform has arrived.

Please assure Kira that she is held in many hearts this evening. And I

hope that you, Enrique, and Krisalynn will all be doing

better--very soon.

Love,

S.

[Guest guest]

Dear ,

Thank you very much. I agree that posting Kira's picture was the most

wise thing to do. As the old saying goes, one picture is worth a

thousand words.

It seems to me that Dr. Boles is your only ace in the hole, so to speak.

What each and every mito patient needs is a proactive doctor on their

team. A person who is willing to stick his or her neck out; who is

willing to buck the entrenched medical establishment. I do pity many

wonderful doctors, because they are so afraid of being sued. A close

family friend, a surgeon, left his practice to teach anatomy at his ivy

league med school because of that factor. He has nine children. One suit

could have taken even his rather humble house. And I know that he

charged very little, and even donated his time on a regular basis in

Haiti.

I think the time for tort reform has arrived.

Please assure Kira that she is held in many hearts this evening. And I

hope that you, Enrique, and Krisalynn will all be doing

better--very soon.

Love,

S.

[Guest guest]

I believe that the reason the UMDF is set up primarily for research is due to

their bylaws which were submitted to get approval for tax exemption. It is my

understanding that they are limited to research thus this has to be their

emphasis. I'm not sure what it would involve for them to change this.

Alice

[Guest guest]

I believe that the reason the UMDF is set up primarily for research is due to

their bylaws which were submitted to get approval for tax exemption. It is my

understanding that they are limited to research thus this has to be their

emphasis. I'm not sure what it would involve for them to change this.

Alice

[Guest guest]

Dear Alice,

To the best of my legal knowledge, a non-profit organization can easily

amend its stated purpose, often called its mission statement, just by

resubmitting an IRS form.

For instance, we have seen non-profit hospitals change their designation

from " hospital " to " medical center " so that they could broaden the kind

of work they do.

Think of the MDA: so much of their income goes for non-research

endeavors like summer camps and their clinics.

I'll try to remember to have my mito brain check on this with those who

know.....

Thanks.

[Guest guest]

Hello all,

Referring to what said below, I think as I have read some of

the personal stories on the list in the last few days, I can identify

with most of the situations others are finding themselves in to one

degree or another. I would be surprised if anyone here has not

experienced first hand the ignorance of mito around them from

everyone; family, friends, bosses, and doctors. I think it is a key

to whether we are able to receive help when we need it or not. It is

crucial actually. How could we expect others to understand how

seriously mito effects us, when our presentation to the world is

often very confusing.

I wonder if a better focus of our attention might not be to make the

public aware of mito and what it involves. I think if it were known

by the general public how difficult the situation is, then the

doctors and funds would follow. I wonder why it might not be an idea

to raise funds to hire a public relations company to do that?

:-)

Adam

> Dear ---and Mr. Mohan,

>

> It is so dreadful that some medical people, like the nurse who came

to

> your house, lose their compassion over time and become quite

hardened.> The biggest problem in all of this is the awful ignorance

about mito.> Because of this, family members turn away, friends

miscontrue events> (like Adrienne's post), doctors put nasty labels

on us (esp. if we are> female, I think), and the suffering patients

get lost in a medical> swamp...... >

> I send you all the warmest of thoughts, and prayers for your health

and

> happiness.

> Sincerely,

> D. Shanley

> Pennsylvania

[Guest guest]

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

>

> Reply-To:

> Date: Mon, 27 Sep 2004 10:51:25 -0000

> To:

> Subject: Re: For Kira, for Adrienne, for Dawn, for Mr. Mohan ---for

> All of Us

>

> Hello all,

>

> Referring to what said below, I think as I have read some of

> the personal stories on the list in the last few days, I can identify

> with most of the situations others are finding themselves in to one

> degree or another. I would be surprised if anyone here has not

> experienced first hand the ignorance of mito around them from

> everyone; family, friends, bosses, and doctors. I think it is a key

> to whether we are able to receive help when we need it or not. It is

> crucial actually. How could we expect others to understand how

> seriously mito effects us, when our presentation to the world is

> often very confusing.

>

> I wonder if a better focus of our attention might not be to make the

> public aware of mito and what it involves. I think if it were known

> by the general public how difficult the situation is, then the

> doctors and funds would follow. I wonder why it might not be an idea

> to raise funds to hire a public relations company to do that?

>

> :-)

> Adam

>

>

>

>> Dear ---and Mr. Mohan,

>>

>> It is so dreadful that some medical people, like the nurse who came

> to

>> your house, lose their compassion over time and become quite

> hardened.> The biggest problem in all of this is the awful ignorance

> about mito.> Because of this, family members turn away, friends

> miscontrue events> (like Adrienne's post), doctors put nasty labels

> on us (esp. if we are> female, I think), and the suffering patients

> get lost in a medical> swamp...... >

>> I send you all the warmest of thoughts, and prayers for your health

> and

>> happiness.

>> Sincerely,

>> D. Shanley

>> Pennsylvania

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Laurie,

Boy, you seem to hit the nail on the head. How many times does

somebody ask how are you and you say fine. Just because you don't

want to complain. I know when I was at the conference, it was the

first time ever, I felt at ease. Like I knew someone else knew just

how I felt. I din't have to pretend to feel good, or act like I

wasn't tired when i was exhausted. It was like I breath of fresh

air. We all probalby do it and not even know because no on likes to

complain all of the time. But a lot of us feel bad alot of the time,

right?

Dawn

[Guest guest]

I have emailed the info department at the UMDF to see if anyone

there can help me with this court issue. Maybe there is an

uninvolved physician who can talk to the court worker about the

importance of treatment, following protocols, avoiding stressors and

looking for crisis situations-all of which Jeff can not do. I hope

somone can help me. thanks for all of the advice and well wishes. I

have also sent a letter to her new mito doc asking for some help

there too. Can you imagine how embarrassing this all is for me to

air my dirty laundry like this? I spent 3 yrs. of marriage covering

up his abuse which is one of the reasons I am in this mess in the

first place. It is horrible. thanks for giving me a place to feel

supported.

Dawn

[Guest guest]

Tks for this insightful post, Laurie. I mull over this issue every

so often and still have very mixed feelings about how all this works

out practically. On one hand, I always wanted to appear " normal, "

especially in the early years, so that people would still treat me

as a whole person like everyone else and not automatically

see " disease " or " disabled " stamped on my forehead. But the better I

was at projecting life as normal, the more people expected of me and

the less people understood. I wanted both: to be understood AND to

be treated as " normal. " My family can do it and a few close friends,

but I think it takes living very close to the situation to

understand just how deceptive appearances can be. Nowadays my

illness has become quite visible and anyone who glances at me can

tell I am sick, so the issue is not passing for normal. It's finding

subtle ways to direct people to view me as a whole person and not

just a sick person. It's letting them know my life does not revolve

around being sick and that I have lots of interests just as healthy

people do. As for the " fine " reply, I used to do that a lot too just

so the conversation could get past the issue of health and get on to

something more interesting. Sometimes, in an effort to be honest, I

would say, " I'm fine, but my body is lagging behind. " Or " I'm fine

but my body isn't doing so hot today. " I understood what that meant,

that such a split was possible, that I could be fine even when my

body wasn't, but healthy people didn't. They haven't had to learn

how to live at a little distance from their bodies.

Barbara

> >> Dear ---and Mr. Mohan,

> >>

> >> It is so dreadful that some medical people, like the nurse who

came

> > to

> >> your house, lose their compassion over time and become quite

> > hardened.> The biggest problem in all of this is the awful

ignorance

> > about mito.> Because of this, family members turn away, friends

> > miscontrue events> (like Adrienne's post), doctors put nasty

labels

> > on us (esp. if we are> female, I think), and the suffering

patients

> > get lost in a medical> swamp...... >

> >> I send you all the warmest of thoughts, and prayers for your

health

> > and

> >> happiness.

> >> Sincerely,

> >> D. Shanley

> >> Pennsylvania

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained herein

> > are not necessarily those of the list moderators. The author of

this e mail is

> > entirely responsible for its content. List members are reminded

of their

> > responsibility to evaluate the content of the postings and

consult with their

> > physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends one is

> > automatically moderated or removed depending on the severity of

the attack.

> >

> >

> >

> >

[Guest guest]

Barbara

I agree completely. My current response is " hanging in there " to those who

don't pick up on the settle stuff.

laurie

>

> Reply-To:

> Date: Mon, 27 Sep 2004 18:01:18 -0000

> To:

> Subject: Re: For Kira, for Adrienne, for Dawn, for Mr. Mohan ---for

> All of Us

>

> Tks for this insightful post, Laurie. I mull over this issue every

> so often and still have very mixed feelings about how all this works

> out practically. On one hand, I always wanted to appear " normal, "

> especially in the early years, so that people would still treat me

> as a whole person like everyone else and not automatically

> see " disease " or " disabled " stamped on my forehead. But the better I

> was at projecting life as normal, the more people expected of me and

> the less people understood. I wanted both: to be understood AND to

> be treated as " normal. " My family can do it and a few close friends,

> but I think it takes living very close to the situation to

> understand just how deceptive appearances can be. Nowadays my

> illness has become quite visible and anyone who glances at me can

> tell I am sick, so the issue is not passing for normal. It's finding

> subtle ways to direct people to view me as a whole person and not

> just a sick person. It's letting them know my life does not revolve

> around being sick and that I have lots of interests just as healthy

> people do. As for the " fine " reply, I used to do that a lot too just

> so the conversation could get past the issue of health and get on to

> something more interesting. Sometimes, in an effort to be honest, I

> would say, " I'm fine, but my body is lagging behind. " Or " I'm fine

> but my body isn't doing so hot today. " I understood what that meant,

> that such a split was possible, that I could be fine even when my

> body wasn't, but healthy people didn't. They haven't had to learn

> how to live at a little distance from their bodies.

>

> Barbara

>

>

>

>

>>>> Dear ---and Mr. Mohan,

>>>>

>>>> It is so dreadful that some medical people, like the nurse who

> came

>>> to

>>>> your house, lose their compassion over time and become quite

>>> hardened.> The biggest problem in all of this is the awful

> ignorance

>>> about mito.> Because of this, family members turn away, friends

>>> miscontrue events> (like Adrienne's post), doctors put nasty

> labels

>>> on us (esp. if we are> female, I think), and the suffering

> patients

>>> get lost in a medical> swamp...... >

>>>> I send you all the warmest of thoughts, and prayers for your

> health

>>> and

>>>> happiness.

>>>> Sincerely,

>>>> D. Shanley

>>>> Pennsylvania

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements

> contained herein

>>> are not necessarily those of the list moderators. The author of

> this e mail is

>>> entirely responsible for its content. List members are reminded

> of their

>>> responsibility to evaluate the content of the postings and

> consult with their

>>> physicians regarding changes in their own treatment.

>>>

>>> Personal attacks are not permitted on the list and anyone who

> sends one is

>>> automatically moderated or removed depending on the severity of

> the attack.

>>>

>>>

>>>

>>>

[Guest guest]

Dawn

The UMDF has a booklet " Think Mitochondria " for $3.00 each. You many have

gotten one at the conference. I have found that doctors, etc. tend to view

the articles as more " gospel " since it is in a booklet form and not articles

printed off the web. You can get most of the articles on line, but this

booklet seems to carry more weight. I give one to each new doctor or

therapist I see. I had one doctor return it, but most like to have it.

I thought this might help a little.

laurie

>

> Reply-To:

> Date: Mon, 27 Sep 2004 16:51:00 -0000

> To:

> Subject: Re: For Kira, for Adrienne, for Dawn, for Mr. Mohan ---for

> All of Us

>

> I have emailed the info department at the UMDF to see if anyone

> there can help me with this court issue. Maybe there is an

> uninvolved physician who can talk to the court worker about the

> importance of treatment, following protocols, avoiding stressors and

> looking for crisis situations-all of which Jeff can not do. I hope

> somone can help me. thanks for all of the advice and well wishes. I

> have also sent a letter to her new mito doc asking for some help

> there too. Can you imagine how embarrassing this all is for me to

> air my dirty laundry like this? I spent 3 yrs. of marriage covering

> up his abuse which is one of the reasons I am in this mess in the

> first place. It is horrible. thanks for giving me a place to feel

> supported.

>

> Dawn

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Dawn

Very much " right " . It is strange that we can be understood as sick when we

have a cold, but not when we don't feel we can take another foot.

laurie

>

> Reply-To:

> Date: Mon, 27 Sep 2004 14:25:07 -0000

> To:

> Subject: Re: For Kira, for Adrienne, for Dawn, for Mr. Mohan ---for

> All of Us

>

> Laurie,

>

> Boy, you seem to hit the nail on the head. How many times does

> somebody ask how are you and you say fine. Just because you don't

> want to complain. I know when I was at the conference, it was the

> first time ever, I felt at ease. Like I knew someone else knew just

> how I felt. I din't have to pretend to feel good, or act like I

> wasn't tired when i was exhausted. It was like I breath of fresh

> air. We all probalby do it and not even know because no on likes to

> complain all of the time. But a lot of us feel bad alot of the time,

> right?

> Dawn

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

I went through that " How are you doing? " about 20 times yesterday, I

think I was ready to hit the last person - I smiled sarcastically and

said " Well enough. "

Woe to the person who asks for more details...

I talked to someone the other day and said that I have trouble

holding my son because I have a neuromuscular disease, and she

said " Me too! I have MS! " like it was a great thing. But like me,

you couldn't tell from looking at her that she is ill at all.

I think " Can't complain. " is a good answer, because it means " I can't

complain because you would be really bored with the details of how

miserable I feel right now... " lol

Take care,

RH

> Laurie,

>

> Boy, you seem to hit the nail on the head. How many times does

> somebody ask how are you and you say fine. Just because you don't

> want to complain. I know when I was at the conference, it was the

> first time ever, I felt at ease. Like I knew someone else knew just

> how I felt. I din't have to pretend to feel good, or act like I

> wasn't tired when i was exhausted. It was like I breath of fresh

> air. We all probalby do it and not even know because no on likes to

> complain all of the time. But a lot of us feel bad alot of the

time,

> right?

> Dawn

[Guest guest]

-How about 'surviving' as a reply..my Dad had MS and that was always

what he said.

Gillian-

- In , " ohgminion " wrote:

> I went through that " How are you doing? " about 20 times yesterday,

I

> think I was ready to hit the last person - I smiled sarcastically

and

> said " Well enough. "

>

> Woe to the person who asks for more details...

>

> I talked to someone the other day and said that I have trouble

> holding my son because I have a neuromuscular disease, and she

> said " Me too! I have MS! " like it was a great thing. But like

me,

> you couldn't tell from looking at her that she is ill at all.

>

> I think " Can't complain. " is a good answer, because it means " I

can't

> complain because you would be really bored with the details of how

> miserable I feel right now... " lol

>

> Take care,

> RH

>

>

>

>

> > Laurie,

> >

> > Boy, you seem to hit the nail on the head. How many times does

> > somebody ask how are you and you say fine. Just because you

don't

> > want to complain. I know when I was at the conference, it was

the

> > first time ever, I felt at ease. Like I knew someone else knew

just

> > how I felt. I din't have to pretend to feel good, or act like I

> > wasn't tired when i was exhausted. It was like I breath of fresh

> > air. We all probalby do it and not even know because no on likes

to

> > complain all of the time. But a lot of us feel bad alot of the

> time,

> > right?

> > Dawn