Re: having a setback...late night posts are never good..[g]

[Guest guest]

Hi, Adam

I read almost all the posts, and write occasionally only, when I think

I might have something to add. Mostly, though, I am just amazed at the

knowledge and patience and kindness that I find at this site, and feel

that I can't contribute much. So many people have so much more

knowledge and wisdom that I do.

I do want to tell you, write here as much as you are able. People are

always accepting. Do not worry about that.

I do want to tell you that low blood pressure can be a huge problem

that you need to investigate. I do not suffer from it personally, but

have a close friend (probably mito) who does. It can go by several

different names. This is from her experience. There is not much

medical treatment for it, as far as prescription drugs, and some meds

make the problem worse. There is one med that she takes sometimes. Many

docs dismiss it. A tilt table test can identify it, It can be part of

mito, they think, because blood pressure regulation is part of the

autonomic nervous system, which can also show as problems with

temeprature regulation and dysmotility, among others. Be sure you do

not take any meds that have a lowering of BP as a side affect. That can

also go for herbs, etc.

My friend has seen an expert in this area, in Toledo. She feels that

understanding/knowing what the problem is, and knowing how to minimize

it has helped her a lot. My friend has tachychardia along with her

dizzy spells and drop in BP. Do you get that too? She can usually feel

the spells coming on, and and avoids falling down by sitting/lying

down. She feels that if she contracts her big muscles isometrically

that this sometimes helps. (Isometric muscle exercise generally raised

BP for anyone, and should therefore be avoided by people with

hypertension - my problem) She feels that keeping hydrated, especially

with salt/sugar (like gatoraide) helps. She takes licorish (sp??) in

some form (can raise BP), and watches that she eats/drinks regularly.

She feels that mixing cabs with protein % fat is the best for her. She

also feels that keeping active when she can do it has helped her, and

even lifts some mild weights to keep her muscle tone when she can.

There is one med, and only one med, that they say helps. I did forget

it, because I did not need to use it. But, the specialist would need

to do that of course. I can try to find the name of the med if

you/anyone would like to know.

Getting this evaluated by a doctor who knows about this is most

important. The more you can tell him when you go the better. What is

your usual BP? Do you know how to take your own pressure? Try to take

it at various times of day, etc. Try to see when it drops. Keep a log

over time.

Nutrition in general, especially fluids with the electrolytes is also

very important. I do not have experience with needing IV's or other

nutritional helps, but maybe that can be a short term boost for you.

Now a thought from me. This is only MY personal experience, and my not

apply to many other people with mito. In thinking back over the last

20 years, I am TOTALLY convinced that I need movement and exercise to

get better. After two major surgeries I had a terrible time

recovering. Res, rest, rest they told me. True, I needed to rest, but

I am convinced that i rested too much. I now believe that I also

benefit from being active (including my much touted weight lifting - i

know some are tired of hearing about it). Finding that magic balance

between rest and pushing myself is the key for me. Instead of napping

during the day, I take constant short rests (many times at the

computer). I wash 2 windows, sit and rest. I do the dishes, sit and

rest. Cut some vegetables, rest........Up and down. All day long. I am

convinced that pushing myself then resting has helped me.

Adam, keep in mind that your surgery took a lot out of you, and your

nutritional limitation further challenges your body. For you right

now, Adam, it might mean only one minute standing brushing your teeth,

then sitting/lying down again. One minute up, then resting. My

thought is to try it that way, being active briefly as frequently as

you can. Medicine in general has now discovered that. They get people

up from really MAJOR surgeries, if possilbe, as soon as they can.

Movement does the body so much good, IF we can tolerate it. Only you

know what you can tolerate.

Fiinally, Adam, try to look at this as another challenge that you can

overcome. Try to be patient with your condition right now, and do all

the things that make sense to you, all the ideas that speak to how

your body is feeling. Have hope that your body can heal, adapt. Give

it the nutrition, rest, and movement that you are able. Get the best

medical advice that you can. the belief that the body has a tremendous

ability to adapt and heal has kept me going through some really rough

times. The believe that I must adapt my activity to what feels right

for me has been a further key.

Warm wishes that you will stay hopeful and see improvement over time.

Hugs, Adam

Sunny

> Adam don't feel bad about venting. There isn't one of us who hasn't

> taken their turn at it.  And it is nice to have a place where people

> do understand. Remember the proverbial glass of water which is

> either half full or half empty depending on your point of view. A

> wise friend once told me that it is OK to have a half-empty day once

> in a while. Even though most of the time you can focus on the

> blessings in your life, somedays the empty space in your glass looms

> large. Hang in there. You do have a cheering section :0)!!!

> Joanne

>

>

>

> 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]

Sunny

I agree with you so much. I too, do a little and rest. I sit to load my

washer and dryer, but this way I can do many loads in one day. I also need

to move every so often or I get really stiff and the cramps get worse. It is

something that needs to be done as your body tells you what to do, since no

two hours are alike.

Thanks for sharing your means of doing what is best for your body. I also

believe that staying positive in spite of things helps my body in the end.

laurie

> From: z39z@...

> Reply-To:

> Date: Wed, 22 Sep 2004 15:30:08 -0400

> To:

> Subject: Re: having a setback...late night posts are never good..[g]

>

> Hi, Adam

>

> I read almost all the posts, and write occasionally only, when I think

> I might have something to add. Mostly, though, I am just amazed at the

> knowledge and patience and kindness that I find at this site, and feel

> that I can't contribute much. So many people have so much more

> knowledge and wisdom that I do.

>

> I do want to tell you, write here as much as you are able. People are

> always accepting. Do not worry about that.

>

> I do want to tell you that low blood pressure can be a huge problem

> that you need to investigate. I do not suffer from it personally, but

> have a close friend (probably mito) who does. It can go by several

> different names. This is from her experience. There is not much

> medical treatment for it, as far as prescription drugs, and some meds

> make the problem worse. There is one med that she takes sometimes. Many

> docs dismiss it. A tilt table test can identify it, It can be part of

> mito, they think, because blood pressure regulation is part of the

> autonomic nervous system, which can also show as problems with

> temeprature regulation and dysmotility, among others. Be sure you do

> not take any meds that have a lowering of BP as a side affect. That can

> also go for herbs, etc.

>

> My friend has seen an expert in this area, in Toledo. She feels that

> understanding/knowing what the problem is, and knowing how to minimize

> it has helped her a lot. My friend has tachychardia along with her

> dizzy spells and drop in BP. Do you get that too? She can usually feel

> the spells coming on, and and avoids falling down by sitting/lying

> down. She feels that if she contracts her big muscles isometrically

> that this sometimes helps. (Isometric muscle exercise generally raised

> BP for anyone, and should therefore be avoided by people with

> hypertension - my problem) She feels that keeping hydrated, especially

> with salt/sugar (like gatoraide) helps. She takes licorish (sp??) in

> some form (can raise BP), and watches that she eats/drinks regularly.

> She feels that mixing cabs with protein % fat is the best for her. She

> also feels that keeping active when she can do it has helped her, and

> even lifts some mild weights to keep her muscle tone when she can.

> There is one med, and only one med, that they say helps. I did forget

> it, because I did not need to use it. But, the specialist would need

> to do that of course. I can try to find the name of the med if

> you/anyone would like to know.

>

> Getting this evaluated by a doctor who knows about this is most

> important. The more you can tell him when you go the better. What is

> your usual BP? Do you know how to take your own pressure? Try to take

> it at various times of day, etc. Try to see when it drops. Keep a log

> over time.

>

> Nutrition in general, especially fluids with the electrolytes is also

> very important. I do not have experience with needing IV's or other

> nutritional helps, but maybe that can be a short term boost for you.

>

> Now a thought from me. This is only MY personal experience, and my not

> apply to many other people with mito. In thinking back over the last

> 20 years, I am TOTALLY convinced that I need movement and exercise to

> get better. After two major surgeries I had a terrible time

> recovering. Res, rest, rest they told me. True, I needed to rest, but

> I am convinced that i rested too much. I now believe that I also

> benefit from being active (including my much touted weight lifting - i

> know some are tired of hearing about it). Finding that magic balance

> between rest and pushing myself is the key for me. Instead of napping

> during the day, I take constant short rests (many times at the

> computer). I wash 2 windows, sit and rest. I do the dishes, sit and

> rest. Cut some vegetables, rest........Up and down. All day long. I am

> convinced that pushing myself then resting has helped me.

>

> Adam, keep in mind that your surgery took a lot out of you, and your

> nutritional limitation further challenges your body. For you right

> now, Adam, it might mean only one minute standing brushing your teeth,

> then sitting/lying down again. One minute up, then resting. My

> thought is to try it that way, being active briefly as frequently as

> you can. Medicine in general has now discovered that. They get people

> up from really MAJOR surgeries, if possilbe, as soon as they can.

> Movement does the body so much good, IF we can tolerate it. Only you

> know what you can tolerate.

>

> Fiinally, Adam, try to look at this as another challenge that you can

> overcome. Try to be patient with your condition right now, and do all

> the things that make sense to you, all the ideas that speak to how

> your body is feeling. Have hope that your body can heal, adapt. Give

> it the nutrition, rest, and movement that you are able. Get the best

> medical advice that you can. the belief that the body has a tremendous

> ability to adapt and heal has kept me going through some really rough

> times. The believe that I must adapt my activity to what feels right

> for me has been a further key.

>

> Warm wishes that you will stay hopeful and see improvement over time.

> Hugs, Adam

>

> Sunny

>

>

>

>

>

>> Adam don't feel bad about venting. There isn't one of us who hasn't

>> taken their turn at it.  And it is nice to have a place where people

>> do understand. Remember the proverbial glass of water which is

>> either half full or half empty depending on your point of view. A

>> wise friend once told me that it is OK to have a half-empty day once

>> in a while. Even though most of the time you can focus on the

>> blessings in your life, somedays the empty space in your glass looms

>> large. Hang in there. You do have a cheering section :0)!!!

>> Joanne

>>

>>

>>

>> 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.

>>

>>

>>

>>

>>

>>