Re: Mutant update!

[Guest guest]

Jo, you are always in my thoughts and prayers, and I DO so HOPE and

PRAY that while you are in the hospital, the doctors will be guided

to offer you many improvements and lots of hope for your future! You

are so young to be battling the way you are, and you do a wonderful

job at it. I can certainly see why it's taking an emotional tole on

you, as most people in your position would have caved in by now, and

been placed in a looney bin rather than a hospital! LOL! ME

INCLUDED! You are a very strong woman, and I know that strength

will serve you well in your future, as well as your great faith! You

have to hang in there, cuz we're all hanging with you....if you

fall, we fall, OK?

Love Lana

> Saw Mac this morning and the poor man is just horrified at the

state

> of me and at a loss as to know what to do next. He desperately

wants

> me to have a full hospital assessment and stated that if Prof

can't

> get me in soon he will take me in and do the assessments here! I

> have spoken with the hospital down in Leeds though and it looks

like

> I will be getting admitted in around 2 weeks times, so that has

> given Mac some reassurance. He has taken me out of my ankle cast

as

> he feels it is putting far too much strain on my knees, but I am

in

> splints to support my legs and have to continue using the walking

> frames and the wheelchair until my admission in order to reduce

the

> risk of further falls and damage.

>

> I could have cried for Mac today as we had a good talk about

things

> and admitted our frustration, fears and desperation to each other -

> Mac even having a private word with my Mom while I got my plaster

> removed highlighting his concerns for me. He's incredibly worried

> about my physical condition but also my emotional well being too,

> realising that this whole situation is starting to take it's toll

on

> me mentally too. Not many OS's would care enough to notice let

alone

> broach such fears, but then that's Mac all over - he's always

cared

> enough about me to hurt for me - and I care enough for him to be

> upset when he does! he really is a very special person to me now

and

> I realised today just how special our relationship is with his

> extreme worry for me and the way he behaved so differently around

me

> to everyone else. At one point he even snook up behind me in the

> packed waiting room, slipped his arms around me and whispered

> something incredibly funny (and unprofessional!) in my ear that

had

> us both howling with laughter - much to the bemusement and

prickling

> of the other patients! LOL Typical of my wonderful Mac though and

I

> just pray ever so hard that I never lose him as my OS or my

friend :-

> )

>

> I have to confess that it scared me a little realising how

urgently

> he wants me in hospital though and how desperately frustrated he

is

> too. I just hope that Prof and the team down there can offer us

both

> some help and hope in coping with this darned condition and the

> effects it is having on both our lives. Mac told me something

today

> that had tears pricking in my eyes, he said that although he

wishes

> that he could fix me, regardless of anything else he will always

me

> there for me, and all I ever had to do was call him. I found that

an

> incredibly generous and touching act form a big, tough Ortho

surgeon

> who could very easily wash his hands of me.

>

> So anyway, as I mentioned before I am currently splinted up to

the

> eyeballs, struggling around with my walkers and wheelchair and

also

> on strict orders form Mac to stay sat in front of the TV watching

> the Olympics until my admission date in order to minimise my

injury

> risks! I'm following orders so far, I even watched the

synchronised

> diving from Athens tonight - it was actually really good too!! I

> will keep you posted on how I am getting on with my Olympic

viewing

> marathon and of course my admission dates etc. Thanks for all your

> support, advice and thoughts during this rather tough times - I

> couldn't get through it without you all.

>

> Thinking of you all and sending lots of warm thoughts and hopes

for

> good days your way.

>

> Love and hugs....Jo

> xxx

[Guest guest]

Hi Jo:

I have been following your saga with batted breath. You certainly have

been having a rough time of it. I certainly agree with others....please

stay in that chair until you get your cardiology assessment done. I

suspect that assessment may shed some light on all the falls and could

well be very helpful. My daughter had a great number of fainting

episodes and some severe tachycardia before I got it figured out. At

the time, I belonged to a yahoo site called neurocardiogenic syncope and

there were a couple of members from England who saw a Professor Bird who

was exceptionally competent and they found him extremely

helpful.....here's hoping.

I have not been replying to posts as I managed to get a virus that

wrecked our computer so my husband worked hours and hours to reformat

it. I was only able to read the posts on the yahoo site using my dtr's

computer but not reply. I now have my own computer as my husband

refuses to let me near his. I really have to ask all you computer gurus

what simple strategies you use to avoid viruses as if I wreck this one,

I doubt I will get another. I do think I picked up the virus in visiting

web sites rather than the list messages that come through my outlook.

How does one avoid web site viruses? I need to learn some basic

defensive strategies to avoid them. It absolutely confounds me that I

can grasp complex medical terminology and implications but computer

terminology, vocabulary and functions seem so foreign to my brain and a

vocabulary that I fail to grasp....the ultimate computer klutz.

Take heart Jo, you will weather this storm just as you have others. We

know the Olympian effort you are making!

Bernie

Mutant update!

Saw Mac this morning and the poor man is just horrified at the state

of me and at a loss as to know what to do next. He desperately wants

me to have a full hospital assessment and stated that if Prof can't

get me in soon he will take me in and do the assessments here! I

have spoken with the hospital down in Leeds though and it looks like

I will be getting admitted in around 2 weeks times, so that has

given Mac some reassurance. He has taken me out of my ankle cast as

he feels it is putting far too much strain on my knees, but I am in

splints to support my legs and have to continue using the walking

frames and the wheelchair until my admission in order to reduce the

risk of further falls and damage.

I could have cried for Mac today as we had a good talk about things

and admitted our frustration, fears and desperation to each other -

Mac even having a private word with my Mom while I got my plaster

removed highlighting his concerns for me. He's incredibly worried

about my physical condition but also my emotional well being too,

realising that this whole situation is starting to take it's toll on

me mentally too. Not many OS's would care enough to notice let alone

broach such fears, but then that's Mac all over - he's always cared

enough about me to hurt for me - and I care enough for him to be

upset when he does! he really is a very special person to me now and

I realised today just how special our relationship is with his

extreme worry for me and the way he behaved so differently around me

to everyone else. At one point he even snook up behind me in the

packed waiting room, slipped his arms around me and whispered

something incredibly funny (and unprofessional!) in my ear that had

us both howling with laughter - much to the bemusement and prickling

of the other patients! LOL Typical of my wonderful Mac though and I

just pray ever so hard that I never lose him as my OS or my friend :-

)

I have to confess that it scared me a little realising how urgently

he wants me in hospital though and how desperately frustrated he is

too. I just hope that Prof and the team down there can offer us both

some help and hope in coping with this darned condition and the

effects it is having on both our lives. Mac told me something today

that had tears pricking in my eyes, he said that although he wishes

that he could fix me, regardless of anything else he will always me

there for me, and all I ever had to do was call him. I found that an

incredibly generous and touching act form a big, tough Ortho surgeon

who could very easily wash his hands of me.

So anyway, as I mentioned before I am currently splinted up to the

eyeballs, struggling around with my walkers and wheelchair and also

on strict orders form Mac to stay sat in front of the TV watching

the Olympics until my admission date in order to minimise my injury

risks! I'm following orders so far, I even watched the synchronised

diving from Athens tonight - it was actually really good too!! I

will keep you posted on how I am getting on with my Olympic viewing

marathon and of course my admission dates etc. Thanks for all your

support, advice and thoughts during this rather tough times - I

couldn't get through it without you all.

Thinking of you all and sending lots of warm thoughts and hopes for

good days your way.

Love and hugs....Jo

xxx

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

[Guest guest]

Hi Jo:

I have been following your saga with batted breath. You certainly have

been having a rough time of it. I certainly agree with others....please

stay in that chair until you get your cardiology assessment done. I

suspect that assessment may shed some light on all the falls and could

well be very helpful. My daughter had a great number of fainting

episodes and some severe tachycardia before I got it figured out. At

the time, I belonged to a yahoo site called neurocardiogenic syncope and

there were a couple of members from England who saw a Professor Bird who

was exceptionally competent and they found him extremely

helpful.....here's hoping.

I have not been replying to posts as I managed to get a virus that

wrecked our computer so my husband worked hours and hours to reformat

it. I was only able to read the posts on the yahoo site using my dtr's

computer but not reply. I now have my own computer as my husband

refuses to let me near his. I really have to ask all you computer gurus

what simple strategies you use to avoid viruses as if I wreck this one,

I doubt I will get another. I do think I picked up the virus in visiting

web sites rather than the list messages that come through my outlook.

How does one avoid web site viruses? I need to learn some basic

defensive strategies to avoid them. It absolutely confounds me that I

can grasp complex medical terminology and implications but computer

terminology, vocabulary and functions seem so foreign to my brain and a

vocabulary that I fail to grasp....the ultimate computer klutz.

Take heart Jo, you will weather this storm just as you have others. We

know the Olympian effort you are making!

Bernie

Mutant update!

Saw Mac this morning and the poor man is just horrified at the state

of me and at a loss as to know what to do next. He desperately wants

me to have a full hospital assessment and stated that if Prof can't

get me in soon he will take me in and do the assessments here! I

have spoken with the hospital down in Leeds though and it looks like

I will be getting admitted in around 2 weeks times, so that has

given Mac some reassurance. He has taken me out of my ankle cast as

he feels it is putting far too much strain on my knees, but I am in

splints to support my legs and have to continue using the walking

frames and the wheelchair until my admission in order to reduce the

risk of further falls and damage.

I could have cried for Mac today as we had a good talk about things

and admitted our frustration, fears and desperation to each other -

Mac even having a private word with my Mom while I got my plaster

removed highlighting his concerns for me. He's incredibly worried

about my physical condition but also my emotional well being too,

realising that this whole situation is starting to take it's toll on

me mentally too. Not many OS's would care enough to notice let alone

broach such fears, but then that's Mac all over - he's always cared

enough about me to hurt for me - and I care enough for him to be

upset when he does! he really is a very special person to me now and

I realised today just how special our relationship is with his

extreme worry for me and the way he behaved so differently around me

to everyone else. At one point he even snook up behind me in the

packed waiting room, slipped his arms around me and whispered

something incredibly funny (and unprofessional!) in my ear that had

us both howling with laughter - much to the bemusement and prickling

of the other patients! LOL Typical of my wonderful Mac though and I

just pray ever so hard that I never lose him as my OS or my friend :-

)

I have to confess that it scared me a little realising how urgently

he wants me in hospital though and how desperately frustrated he is

too. I just hope that Prof and the team down there can offer us both

some help and hope in coping with this darned condition and the

effects it is having on both our lives. Mac told me something today

that had tears pricking in my eyes, he said that although he wishes

that he could fix me, regardless of anything else he will always me

there for me, and all I ever had to do was call him. I found that an

incredibly generous and touching act form a big, tough Ortho surgeon

who could very easily wash his hands of me.

So anyway, as I mentioned before I am currently splinted up to the

eyeballs, struggling around with my walkers and wheelchair and also

on strict orders form Mac to stay sat in front of the TV watching

the Olympics until my admission date in order to minimise my injury

risks! I'm following orders so far, I even watched the synchronised

diving from Athens tonight - it was actually really good too!! I

will keep you posted on how I am getting on with my Olympic viewing

marathon and of course my admission dates etc. Thanks for all your

support, advice and thoughts during this rather tough times - I

couldn't get through it without you all.

Thinking of you all and sending lots of warm thoughts and hopes for

good days your way.

Love and hugs....Jo

xxx

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

[Guest guest]

Thanks for your kind thoughts and support Bernie, my surgeon is very

keen for me to get my cardiology assessment too and has actually

written to my cardiologists expressing his concerns. I have injured

myself in a few falls caused by my blacking out and altered BP/HR so

it's definitely an issue that needs sorting out. I'm really hoping

that getting to the bottom of that will help avoid some of my falls

and injuries, but sadly most of my recent falls have been more joint

failure induced than a case of blacking so we are fighting two

causes of falling! My leg joints have a habit of just letting go and

dislocating at the slightest things, leaving me in a heap and

nursing more bruises, tears or breaks - that's why I'm splinted up

to look like an Egyptian Mummy right now and having to use the

walkers and wheelchair.

I really am hoping that the combination of my stay with Prof and

liaison with my other local consultants will provide me with some

answers to certain problems and some options to help us at least

manage my instability problems a bit better. Ideally I need both of

my legs rebuilding, but so far nobody has the skills or courage to

try! Fingers crossed I find a hero soon - even if having a surgeon

wearing a cape and his underpants over his trousers may be a little

disturbing! lol

How are things going for you and your daughter? I hope that you are

both having better times now and that you know you're in my thoughts

and prayers. Sorry to hear about your computer probs, urgh they can

be evil at times can't they? Thanks again for your thoughts Darl,

take care and I hope to catch up with you again soon.

Love and hugs.....Jo

xxx

[Guest guest]

Jo, have you ever considered calling Mayo clinic, NIH or Hopkins

in the US?? It's just a thought. Also, what about looking here?

http://www.hphdhelp.org/finding.htm This stuff may not help at all -

I'm just brainstorming. Sometimes something comes out of that, so if

any others can do the same, maybe we can help Jo find some answers!!!

Love Lana

Ideally I need both of

> my legs rebuilding, but so far nobody has the skills or courage to

> try! Fingers crossed I find a hero soon - even if having a surgeon

> wearing a cape and his underpants over his trousers may be a little

> disturbing! lol

[Guest guest]

Jo, have you ever considered calling Mayo clinic, NIH or Hopkins

in the US?? It's just a thought. Also, what about looking here?

http://www.hphdhelp.org/finding.htm This stuff may not help at all -

I'm just brainstorming. Sometimes something comes out of that, so if

any others can do the same, maybe we can help Jo find some answers!!!

Love Lana

Ideally I need both of

> my legs rebuilding, but so far nobody has the skills or courage to

> try! Fingers crossed I find a hero soon - even if having a surgeon

> wearing a cape and his underpants over his trousers may be a little

> disturbing! lol

[Guest guest]

I managed to " cure " my drops (which may not have been as extensive as

others problems) by either getting up very slowly or very quickly and

energetically - it seemed to be the in-between efforts to get up that

were the problem. It's probably been years now since these have been a

bother to me.

Somehow the muscular effort of getting up quickly, with muscles

squeezing the blood vessels in the arms and legs, kept enough blood in

my noggin - even at a time when I was given medication that

dramatically lowered my blood pressure. Needless to say, if someone

wants to try even quicker elevations as a coping mechanism, they

should try it out for a while with someone else there to catch them,

or at least over a soft bed for a while to be sure.

> Jo:

> I was just deleting e-mails and have a question re your falls. Have a

> high number of them occurred after getting up from a meal, during, or

> with extra exertion or when you have gotten up and performed an action

> with arms above your head....or when you became too hot in the sun.

>

> At ages 4-10 Meaghan would have drop episodes, where she would get up

> quickly from dinner, always at end of meal and fall when at the same

> distance from the table (not every day) and it would seem as though her

> foot appeared to slip. She would then smash down to her knees and

> experience horrible knee pain....would be down in a flash. We even

> wondered if she was having some sort of petit mal seizure because of the

> suddenness. We now understand that this was post prandial hypotension or

> fainting and a very sudden drop in Blood Pressure after eating. When you

> eat, blood rushes to the stomach for digestion and you have less going

> to the brain and extremities. At that age she also always sat on her

> haunches( feet under her butt, knees bent)so that when she stood up she

> would get a rush of blood to her lower extremities. It confounded us

> for years.

>

> At 17 she can precipitate a very quick low blood

> pressure(fainting)episode by rapid change in temperature, say going from

> cool air conditioning to the hot exterior temperature of a July day

> (very quick), and she can go down. Barbecuing can do it too. Just the

> blast of heat from opening a hot barbecue can very quickly precipitate

> it. She has had to put her hand out to steady herself and has even

> burned herself so it is very quick, no warning.

> Getting up from sitting and reaching to the top cupboard and she can go

> down. She describes it as her knees suddenly failing to support and she

> is down, but she does not pass out, just foggy. Perhaps, with your very

> loose joints, the dislocation happens as a result of quickly meeting the

> floor.

>

> With using crutches your arms and hands are hanging down and encouraging

> pooling in those extremities. Perhaps the crutches are contributing

> somehow. Meaghan gets amazing colour changes in extremeties if hands

> hang down at her sides for a time (get blue) and then she raises them

> above her head( go white), very noticeable, particularly in hot weather

> as heat causes blood vessels to dilate more with quicker and greater

> pooling of blood in vessels. It was much worse when she had a borderline

> low hemaglobin. Bringing up her hemaglobin even a bit helped and she

> dislikes meat. Perhaps using the crutches contributes in some way and a

> walker where your hands are at waist level would be just enough to help.

> Would it give support tho?

>

> Just my thoughts, as it is only this very day that I am realising it was

> sitting on her haunches that must have been the factor that tipped the

> balance.

>

> Roll it over in your mind and see what you think. There are a huge

> number of strategies to cope with the effects of this syndrome and we

> have had to use every one. Do you jiggle your legs LOTS before getting

> out of bed in the morning. Difficult to remember when sleepy!

> I do hope examining the events surrounding falls and looking for these

> triggers I mentioned might give you clues to possible prevention.

>

> Bernie

>

> Re: Mutant update!

>

> Thanks for your kind thoughts and support Bernie, my surgeon is very

> keen for me to get my cardiology assessment too and has actually

> written to my cardiologists expressing his concerns. I have injured

> myself in a few falls caused by my blacking out and altered BP/HR so

> it's definitely an issue that needs sorting out. I'm really hoping

> that getting to the bottom of that will help avoid some of my falls

> and injuries, but sadly most of my recent falls have been more joint

> failure induced than a case of blacking so we are fighting two

> causes of falling! My leg joints have a habit of just letting go and

> dislocating at the slightest things, leaving me in a heap and

> nursing more bruises, tears or breaks - that's why I'm splinted up

> to look like an Egyptian Mummy right now and having to use the

> walkers and wheelchair.