Re: New Doctor visit today-Triggers and Coping

[Guest guest]

Hi :

For us, learning that low BP after standing for 2-3 min. was causing a

great many difficulties for my daughter helped immensely in teaching her

ways of compensating and feeling that she can contribute.

Example: Standing at the sink for longer periods and standing at the

stove are two problems. Therefore, with my guidance she has learned

that she can peel vegetables sitting at the table and feels really good

about contributing to meal preparation. If frying bacon at the stove,

or boiling something on the element, she will sit for periods as she

needs to. Standing in the iles at the grocery store is very difficult

so she takes the cart and list for common purchases like milk, eggs,

butter, bread, items where she can keep moving and then return the cart

to me. Then she will find a box to sit on or go to the front of the

store where there is a bench and wait for me. For her it is standing to

read labels or in line that is the problem. Also, in her bedroom she

can fold her clothes while sitting and place them on open shelves and

also dress while sitting. For her, reducing the standing time reduces

the lightheadedness and the exhaustion, fatigue that follows.

Previously, she would become extremely irritable and argumentative just

due to fatigue. Now, I almost always recognize her fatigue and

sometimes at home I have requested that she lie down on the floor

wherever we are and put her feet up on a chair or whatever. She will

feel better within 2-7 minutes and her whole demeanor changes. We have

often used this in the mornings, her worst times. It is amazing how

much smoother things are when she is given permission to compensate when

she needs to. Otherwise, she would just keep trucking and get more and

more exhausted and then quit and things would not get done. Everything

does not always go smoothly by a long shot, but being understood, and

her problems acknowledged has has been most encouraging to her. She is

no longer trying to cope alone and without support.

For her, it seems the low B.P causes the greater immediate problem, and

particularly so when medication for it has not yet been taken.

Hope this helps, Bernie

Re: New Doctor visit today

Bernie - I think one of the many things I need to do is become more

aware of my body and what is actually going on - and also to teach my

kids that. Today as I was walking I started to feel pain in my

leg/hip area - I know it is muscle pain - however, it happens most

everytime I go out and walk with longish strides. So today, after

reading your other post, I started thinking what exactly was causing

the muscle pain - and knowing what I do know about my body, I think

that the femur is subluxing a bit. I know that my femur has subluxed

a lot in the past, and am just now realizing that it might be

happening a lot more frequently. Now the question is what do I do

about it and how exactly do I help the girls who also have had femur

subluxations in the past. They haven't had much pain with all these

crazy subluxations yet - but I know the pain is coming. Somedays I

feel overwhelmed and others I'm ready to take on the world - guess

that's life.

Anyway - that was a long way to say - keep educating everyone!!

Every bit helps!

[Guest guest]

Hi :

For us, learning that low BP after standing for 2-3 min. was causing a

great many difficulties for my daughter helped immensely in teaching her

ways of compensating and feeling that she can contribute.

Example: Standing at the sink for longer periods and standing at the

stove are two problems. Therefore, with my guidance she has learned

that she can peel vegetables sitting at the table and feels really good

about contributing to meal preparation. If frying bacon at the stove,

or boiling something on the element, she will sit for periods as she

needs to. Standing in the iles at the grocery store is very difficult

so she takes the cart and list for common purchases like milk, eggs,

butter, bread, items where she can keep moving and then return the cart

to me. Then she will find a box to sit on or go to the front of the

store where there is a bench and wait for me. For her it is standing to

read labels or in line that is the problem. Also, in her bedroom she

can fold her clothes while sitting and place them on open shelves and

also dress while sitting. For her, reducing the standing time reduces

the lightheadedness and the exhaustion, fatigue that follows.

Previously, she would become extremely irritable and argumentative just

due to fatigue. Now, I almost always recognize her fatigue and

sometimes at home I have requested that she lie down on the floor

wherever we are and put her feet up on a chair or whatever. She will

feel better within 2-7 minutes and her whole demeanor changes. We have

often used this in the mornings, her worst times. It is amazing how

much smoother things are when she is given permission to compensate when

she needs to. Otherwise, she would just keep trucking and get more and

more exhausted and then quit and things would not get done. Everything

does not always go smoothly by a long shot, but being understood, and

her problems acknowledged has has been most encouraging to her. She is

no longer trying to cope alone and without support.

For her, it seems the low B.P causes the greater immediate problem, and

particularly so when medication for it has not yet been taken.

Hope this helps, Bernie

Re: New Doctor visit today

Bernie - I think one of the many things I need to do is become more

aware of my body and what is actually going on - and also to teach my

kids that. Today as I was walking I started to feel pain in my

leg/hip area - I know it is muscle pain - however, it happens most

everytime I go out and walk with longish strides. So today, after

reading your other post, I started thinking what exactly was causing

the muscle pain - and knowing what I do know about my body, I think

that the femur is subluxing a bit. I know that my femur has subluxed

a lot in the past, and am just now realizing that it might be

happening a lot more frequently. Now the question is what do I do

about it and how exactly do I help the girls who also have had femur

subluxations in the past. They haven't had much pain with all these

crazy subluxations yet - but I know the pain is coming. Somedays I

feel overwhelmed and others I'm ready to take on the world - guess

that's life.

Anyway - that was a long way to say - keep educating everyone!!

Every bit helps!

[Guest guest]

Hi :

For us, learning that low BP after standing for 2-3 min. was causing a

great many difficulties for my daughter helped immensely in teaching her

ways of compensating and feeling that she can contribute.

Example: Standing at the sink for longer periods and standing at the

stove are two problems. Therefore, with my guidance she has learned

that she can peel vegetables sitting at the table and feels really good

about contributing to meal preparation. If frying bacon at the stove,

or boiling something on the element, she will sit for periods as she

needs to. Standing in the iles at the grocery store is very difficult

so she takes the cart and list for common purchases like milk, eggs,

butter, bread, items where she can keep moving and then return the cart

to me. Then she will find a box to sit on or go to the front of the

store where there is a bench and wait for me. For her it is standing to

read labels or in line that is the problem. Also, in her bedroom she

can fold her clothes while sitting and place them on open shelves and

also dress while sitting. For her, reducing the standing time reduces

the lightheadedness and the exhaustion, fatigue that follows.

Previously, she would become extremely irritable and argumentative just

due to fatigue. Now, I almost always recognize her fatigue and

sometimes at home I have requested that she lie down on the floor

wherever we are and put her feet up on a chair or whatever. She will

feel better within 2-7 minutes and her whole demeanor changes. We have

often used this in the mornings, her worst times. It is amazing how

much smoother things are when she is given permission to compensate when

she needs to. Otherwise, she would just keep trucking and get more and

more exhausted and then quit and things would not get done. Everything

does not always go smoothly by a long shot, but being understood, and

her problems acknowledged has has been most encouraging to her. She is

no longer trying to cope alone and without support.

For her, it seems the low B.P causes the greater immediate problem, and

particularly so when medication for it has not yet been taken.

Hope this helps, Bernie

Re: New Doctor visit today

Bernie - I think one of the many things I need to do is become more

aware of my body and what is actually going on - and also to teach my

kids that. Today as I was walking I started to feel pain in my

leg/hip area - I know it is muscle pain - however, it happens most

everytime I go out and walk with longish strides. So today, after

reading your other post, I started thinking what exactly was causing

the muscle pain - and knowing what I do know about my body, I think

that the femur is subluxing a bit. I know that my femur has subluxed

a lot in the past, and am just now realizing that it might be

happening a lot more frequently. Now the question is what do I do

about it and how exactly do I help the girls who also have had femur

subluxations in the past. They haven't had much pain with all these

crazy subluxations yet - but I know the pain is coming. Somedays I

feel overwhelmed and others I'm ready to take on the world - guess

that's life.

Anyway - that was a long way to say - keep educating everyone!!

Every bit helps!

[Guest guest]

Yep, Bernie, it does help. It explains a lot of my family's behavior

over the years, too. Mom and Grandma always sat to peel veggies, cut

up fruit, etc. Mom always sat whenever possible when teaching and

folding clothes and ironing, etc. Mom always sits with her feet up.

Funny how they just knew what to do.

Hannah my number three seems to be most affected by low bp - she is

always lieing down at stores at times when she 'should' be standing.

Actually drives me crazy to have her lie down on the floor at the

grocery store. We've worked on her not lieing in the middle of an

isle - we've found that squatting will work in a pinch - or she can

sit on the bottom shelf of the cart, etc. I've also noticed that the

girls tend to go sit at the bench by the door while I'm checking out.

We homeschool and have always been rather relaxed so it's been easy

to lie on the bed and read or do math or whatever - and she can take

mornings at her own pace. Even though I didn't know what was going

on I've always been pretty in tune with what worked best for them. I

know I'm going to have to speak with her choir director so she knows

Hannah has trouble standing for long periods - I doubt it will be a

problem since she's almost passed out at the last two dress

rehearsals. The violin instructor is also very understanding and has

caught 'about ready to faint' episodes in two of the girls before

they really knew what was going on - he noticed that their color and

expression just wasn't right. Of course we had no idea why it was

happening - but he has fibromyalsia so he understands undiagnosed

symptoms.

I'm going to watch the mood thing and see if outbursts are connected

to low bp times. Thanks for that tip.

Naomi has low bp, too, but I think she mostly combats it by never,

never being still. She, too, has done some instinctive compensating -

like sitting while practicing her violin instead of standing like

she is 'suppose to'. She's found that it is harder to concentrate

when she stands up.

Being understood hasn't been a problem for them - they are such good

kids that the few teachers that have noticed never believe they are

faking. Another homeschool blessing. I do absolutely agree that

acknowledgement is one of the keys in coping with chronic diseases

such as this one.

So ya'll do anything nutritionally that helps? Any and all

tips,nutritionally and otherwise, welcome.

[Guest guest]

:

Looking back I clearly see that my at very early age and throughout

childhood my dtr was the most restless when she was the most exhausted,

first thing in am and immediately after school when she could let down

and be herself. They are engaging the skeletal muscle pump to reduce

pooling in the limbs, am certain. Mine was always wiggling in one

fashion or another when standing, and essentially never stood around

with others.....would be moving in a circle, wiggling or would sit.

Even when sitting, she would be moving one or other of her extremities,

or even moving in a circle.

I have never had any success with the nutritional thing, other than to

notice that salty foods were favoured by far. I now know that when I

give her salty foods she will automatically drink more which she needs

to do. I find it more fruitful to give salty foods rather than bug her

to drink more. Fresh O.J. is supposed to have lots of potassium so that

should be a better food, or bananas. My dtr. much prefers salt to sweet

like candy bars which I now understand well. She had so little appetite

her whole life and always so thin that I was just grateful that she

would eat. If I had to do it again I would give her salt on apple

slice, or on whatever fruit or vegetable she would eat. The Dexedrine is

hugely destructive of appetite.

Bernie

Re: New Doctor visit today-Triggers and Coping

Yep, Bernie, it does help. It explains a lot of my family's behavior

over the years, too. Mom and Grandma always sat to peel veggies, cut

up fruit, etc. Mom always sat whenever possible when teaching and

folding clothes and ironing, etc. Mom always sits with her feet up.

Funny how they just knew what to do.

Hannah my number three seems to be most affected by low bp - she is

always lieing down at stores at times when she 'should' be standing.

Actually drives me crazy to have her lie down on the floor at the

grocery store. We've worked on her not lieing in the middle of an

isle - we've found that squatting will work in a pinch - or she can

sit on the bottom shelf of the cart, etc. I've also noticed that the

girls tend to go sit at the bench by the door while I'm checking out.

We homeschool and have always been rather relaxed so it's been easy

to lie on the bed and read or do math or whatever - and she can take

mornings at her own pace. Even though I didn't know what was going

on I've always been pretty in tune with what worked best for them. I

know I'm going to have to speak with her choir director so she knows

Hannah has trouble standing for long periods - I doubt it will be a

problem since she's almost passed out at the last two dress

rehearsals. The violin instructor is also very understanding and has

caught 'about ready to faint' episodes in two of the girls before

they really knew what was going on - he noticed that their color and

expression just wasn't right. Of course we had no idea why it was

happening - but he has fibromyalsia so he understands undiagnosed

symptoms.

I'm going to watch the mood thing and see if outbursts are connected

to low bp times. Thanks for that tip.

Naomi has low bp, too, but I think she mostly combats it by never,

never being still. She, too, has done some instinctive compensating -

like sitting while practicing her violin instead of standing like

she is 'suppose to'. She's found that it is harder to concentrate

when she stands up.

Being understood hasn't been a problem for them - they are such good

kids that the few teachers that have noticed never believe they are

faking. Another homeschool blessing. I do absolutely agree that

acknowledgement is one of the keys in coping with chronic diseases

such as this one.

So ya'll do anything nutritionally that helps? Any and all

tips,nutritionally and otherwise, welcome.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca