Re: Pain, anger and recklessness

[Guest guest]

Hi Cindy, thanks for your thoughts and kindness Darl. I'm afraid

that the left leg amputation isn't just a pain driven thought in the

dead of night sadly, it is actually a considered option from my

surgeons because

of the rare bone deformities I have in my leg. Every bone from my

pelvis down is twisted of malformed, which makes my dislocations

worse. All in all I have mechanical scoliosis, pelvic tilting, hip

dysplasia, femoral ante version, knee dysplasia,missing aspects of

the knee joint, tilted patella, valgus and varus deformity of the

tibia and ankle/foot deformities in both legs, worse on the left

though.

So the AK amp would be done for functional reasons rather than pain

relief. Phantom pain would be an issue, but there is a better chance

I could walk with a prosthetic than there is of me keeping walking

on my real leg.

thanks again for your kind words and thoughts Darl. Hope you are

well and sending lots of love to you and your family.

Love and hugs....Jo

xx

P.S. Apologies if this posted twice, I posted it without spell

checks first off.

[Guest guest]

Hi Cindy, thanks for your thoughts and kindness Darl. I'm afraid

that the left leg amputation isn't just a pain driven thought in the

dead of night sadly, it is actually a considered option from my

surgeons because

of the rare bone deformities I have in my leg. Every bone from my

pelvis down is twisted of malformed, which makes my dislocations

worse. All in all I have mechanical scoliosis, pelvic tilting, hip

dysplasia, femoral ante version, knee dysplasia,missing aspects of

the knee joint, tilted patella, valgus and varus deformity of the

tibia and ankle/foot deformities in both legs, worse on the left

though.

So the AK amp would be done for functional reasons rather than pain

relief. Phantom pain would be an issue, but there is a better chance

I could walk with a prosthetic than there is of me keeping walking

on my real leg.

thanks again for your kind words and thoughts Darl. Hope you are

well and sending lots of love to you and your family.

Love and hugs....Jo

xx

P.S. Apologies if this posted twice, I posted it without spell

checks first off.

[Guest guest]

Hi Cindy, thanks for your thoughts and kindness Darl. I'm afraid

that the left leg amputation isn't just a pain driven thought in the

dead of night sadly, it is actually a considered option from my

surgeons because

of the rare bone deformities I have in my leg. Every bone from my

pelvis down is twisted of malformed, which makes my dislocations

worse. All in all I have mechanical scoliosis, pelvic tilting, hip

dysplasia, femoral ante version, knee dysplasia,missing aspects of

the knee joint, tilted patella, valgus and varus deformity of the

tibia and ankle/foot deformities in both legs, worse on the left

though.

So the AK amp would be done for functional reasons rather than pain

relief. Phantom pain would be an issue, but there is a better chance

I could walk with a prosthetic than there is of me keeping walking

on my real leg.

thanks again for your kind words and thoughts Darl. Hope you are

well and sending lots of love to you and your family.

Love and hugs....Jo

xx

P.S. Apologies if this posted twice, I posted it without spell

checks first off.

[Guest guest]

From: Jo

Thanks Cindy, I am so sorry that your pain drives you to

the amputation thoughts too.

***********

It is my son's pain. It has crossed my mind a time or two.

***********

Anyway, thanks again for letting me get this off my chest and for

your time and support Cindy, I really appreciate it. Take care.Love and

hugs.....Jo

************

Any time Jo, We can say things here, no one else wants to hear or think about.

Cindylouwho

[Guest guest]

From: Jo

Thanks Cindy, I am so sorry that your pain drives you to

the amputation thoughts too.

***********

It is my son's pain. It has crossed my mind a time or two.

***********

Anyway, thanks again for letting me get this off my chest and for

your time and support Cindy, I really appreciate it. Take care.Love and

hugs.....Jo

************

Any time Jo, We can say things here, no one else wants to hear or think about.

Cindylouwho

[Guest guest]

Jo,

I am so sorry that your legs are having problems, worsening of

late. i know that is the most difficult thing for me to have

problems with. if my shoulder or wrist is not behaving then i just

don't use it, but not to be able to use my legs is very difficult.

i do have a wheelchair that i use when i need it, i am not in it

perminently but when my legs are giving out on me it helps me get

around. you are right that it is a big step but it is not that

bad. it just takes some adjusting. but having the chair makes me

feel a little bit more freedom, since now i can go shopping. there

are days where i feel like i can not take the pain and dislocations

anymore as well, i think we have all been there. it is just hanging

onto those hopes and dreams that get us through the tough times.

i also get upset when i see " healthy " people abusing their bodies.

my husband is a runner and ever time he goes running i wish i could

go with. but i know that i would not make it past the neighboors

driveway. people don't realize how good they have it until it is

taken away from them.

keep reaching for the stars. hopefully, one day someone will find a

way to help us.

hugs

jen

EDS III

Phoenix, AZ

>but I feel so very angry

> that I would give anything to have working legs, yet constantly

see

> fit, healthy people abusing the incredible privilege they have.

> Perfectly normal people using disabled parking slots, driving a

few

> yards rather than walk it and pumping their bodies full of junk

and

> chemicals. Apologies for the vent, I get so bloody cross at the

way

> people take for granted something I would give almost anything for

> though.

>

> Oh well, here's to dreams and reaching for the stars, you never

know

> I may yet just reach the moon instead! Thank you for listening.

>

> Love and hugs.....Jo

> xxx

[Guest guest]

Jo,

I am so sorry that your legs are having problems, worsening of

late. i know that is the most difficult thing for me to have

problems with. if my shoulder or wrist is not behaving then i just

don't use it, but not to be able to use my legs is very difficult.

i do have a wheelchair that i use when i need it, i am not in it

perminently but when my legs are giving out on me it helps me get

around. you are right that it is a big step but it is not that

bad. it just takes some adjusting. but having the chair makes me

feel a little bit more freedom, since now i can go shopping. there

are days where i feel like i can not take the pain and dislocations

anymore as well, i think we have all been there. it is just hanging

onto those hopes and dreams that get us through the tough times.

i also get upset when i see " healthy " people abusing their bodies.

my husband is a runner and ever time he goes running i wish i could

go with. but i know that i would not make it past the neighboors

driveway. people don't realize how good they have it until it is

taken away from them.

keep reaching for the stars. hopefully, one day someone will find a

way to help us.

hugs

jen

EDS III

Phoenix, AZ

>but I feel so very angry

> that I would give anything to have working legs, yet constantly

see

> fit, healthy people abusing the incredible privilege they have.

> Perfectly normal people using disabled parking slots, driving a

few

> yards rather than walk it and pumping their bodies full of junk

and

> chemicals. Apologies for the vent, I get so bloody cross at the

way

> people take for granted something I would give almost anything for

> though.

>

> Oh well, here's to dreams and reaching for the stars, you never

know

> I may yet just reach the moon instead! Thank you for listening.

>

> Love and hugs.....Jo

> xxx

[Guest guest]

Hi again Jo,

Just one more thing... Having dreams is never ridiculous!!! Dreams

are very important and we all need them!!! Never let anyone crush

your dreams!!! Even if you maybe can't do just that climbing,

dreaming of doing it can help you achieve lots of other things. And

as time passes, we often end up having dreams that we can do, if we

stretch a bit...

PS! An EDS friend of mine did climb a really steep mountain here. Not

that high, but quite difficult to climb. She achieved her climbing

dream by having good help and assistance from her PT, an orthopedic

engineer, climbing enthusiasts as well as friends/family. Both her

shoulders, collar bones, hands, fingers etc. were taped very, very

well, and she also had several braces on. She was very well secured,

and a climber was beside her all the time to make sure it was done in

a safe way, and ready to assist if anything should happen. Then there

was also people filming, from all angles, and the whole thing was

professionally edited afterwards, and is being used for... guess....

a motivation piece about following your dreams... It is being used by

a Christian organization she is a member of...

hugs,

Aase Marit

>It's a ridiculous dream and I know full well that it's very unlikely

>I would be allowed to do so.... but it still doesn't stop me hoping

>and dreaming!

[Guest guest]

Hi again Jo,

Just one more thing... Having dreams is never ridiculous!!! Dreams

are very important and we all need them!!! Never let anyone crush

your dreams!!! Even if you maybe can't do just that climbing,

dreaming of doing it can help you achieve lots of other things. And

as time passes, we often end up having dreams that we can do, if we

stretch a bit...

PS! An EDS friend of mine did climb a really steep mountain here. Not

that high, but quite difficult to climb. She achieved her climbing

dream by having good help and assistance from her PT, an orthopedic

engineer, climbing enthusiasts as well as friends/family. Both her

shoulders, collar bones, hands, fingers etc. were taped very, very

well, and she also had several braces on. She was very well secured,

and a climber was beside her all the time to make sure it was done in

a safe way, and ready to assist if anything should happen. Then there

was also people filming, from all angles, and the whole thing was

professionally edited afterwards, and is being used for... guess....

a motivation piece about following your dreams... It is being used by

a Christian organization she is a member of...

hugs,

Aase Marit

>It's a ridiculous dream and I know full well that it's very unlikely

>I would be allowed to do so.... but it still doesn't stop me hoping

>and dreaming!

[Guest guest]

From: Jo

Gosh, I really hate my legs!! Yep, yet again my troublesome left knee has caused

me to get a closer look at my carpet.

~~~

Dear Jo,

I'm sending up prayers for you. It sure sounds painful!!

But thankfully your post-op shoulder didn't get the brunt of if. {whew}

Sure hope you can get out of telling Mac about it.

I went through something like it last fall when post -op with the basilar thumb

surgery. My knee buckled. And caused my thumb to dislocate when it hit the bed

rail. Ending in part to cause the middle thumb joint fusion.

The other MCP is being done in Aug. because the hypermobility increased and

ability to use it effectively is decreased since then. {and pain increased}

Jo, you have cute legs. :D I forgot to find the pictures of Jeni's legs (my

daughter with EDS)...She too has tibial torsion. And says her legs are her best

feature....

It's good to vent! We all need that.

Matter of fact, I need a good one right now. grrrrrrrrr Frustration to the

hilt....it's like I have no control over what my joints will end up doing

next....

All the stupid doctors who have ever said to us, " you'll get better as you get

old, can stuff it!!!! "

Keep us posted on how you're doing.

Love and hugs~

CindyH

Wisc.

[Guest guest]

Jo,

I am so sorry for evcerything you are going through at the moment.

You just never seem to get a seconds peace.

As to the bridge climb I am sure I read/ saw on the news recently (or

not to long ago) about some one with a heart condition doing it and

also a paraplegic did it (I can't remember if he used his hands or

was carried but I am sure I heard about it), so don't give up on the

dream (I am petrified of heights so I will watch safely from the

ground as otherwise I will be sitting a few feet of the

ground on the walkway too scared to move although I have been

hot air ballooning and that did't really care me

I am so sorry that you are going through so much lately and it is

very hard to have your body deteriorate so quickly and so horribly,

of course it is hard to understand and cope with.

Good Luck and let us know how the appointment with Mac goes OK.

Sharon

> Gosh, I really hate my legs!! Yep, yet again my troublesome left

> knee has caused me to get a closer look at my carpet. I was just

> clambering back to my feet having shuffled up the stairs on my bum,

> when my knee just popped out and gave way completely again. I went

> down with the full force on my knee too which has only complicated

> matters - thankfully I was able to protect my left arm somewhat

> avoiding damaging my recovering shoulder and messed up wrist

> further. I am generally shaken up with the fall of course, but my

> knee is just going crazy.

>

> It is painful form the dislocation and the impact too, as it seems

> to have jolted back into joint and then jumped upwards when I've

> bashed it too. It's still sitting rather twisted and I think it may

> be pressing on a nerve too as my foot is quite tingly and just not

> quite right. I can't bend my leg and I'm struggling to put any

> weight through it especially as I can't use two crutches because of

> my arm....am actually relaying on my Dad to half support and half

> carry me right now.

>

> I've taken some hefty painkillers, but it's still very sore. I just

> hope I can get some sleep and it settles overnight, if not I will

> have to mention it to my OS when I see him tomorrow afternoon.

> Something I really hope isn't necessary as poor Mac gets rather

> unsettled and green at the prospect of handling my freaky knees. To

> be honest, the way I feel at the moment I'd gladly just let him

hack

> it off as it is pretty darned useless. I am so tired of constant

> pain, dislocations and falls, I really just don't know how much

more

> I can take. And I am terrified of falling and damaging my shoulder

> again or doing more upper body damage too.

>

> I am still contemplating the possibility of AK amputation of my

left

> leg. But the stark truth is that both of my legs are failing

rapidly

> meaning the wheelchair is looming larger by the day and the reality

> of that scares the heck out of me still. I know it's not as bad as

I

> think it will be, but it's a huge step to go from county class

> runner and three day event rider to wheelchair bound cripple in

> little over 5 years. I'm sorry for whinging I feel so guilty as

> there are people so much worse than I am...but I feel so very angry

> that I would give anything to have working legs, yet constantly see

> fit, healthy people abusing the incredible privilege they have.

> Perfectly normal people using disabled parking slots, driving a few

> yards rather than walk it and pumping their bodies full of junk and

> chemicals. Apologies for the vent, I get so bloody cross at the way

> people take for granted something I would give almost anything for

> though.

>

> You know because of my pain and anger, I am actually feeling really

> reckless and stupid right now as the fact my time walking is coming

> to an end. You're all going to think I am completely nuts and I

know

> that there is Buckley's chance of this happening, but you know what

> I would really love to do before I completely lose my legs? I want

> to climb the Sydney Harbour Bridge raising money for EDS research.

> It's a ridiculous dream and I know full well that it's very

unlikely

> I would be allowed to do so.... but it still doesn't stop me hoping

> and dreaming!

>

> Oh well, here's to dreams and reaching for the stars, you never

know

> I may yet just reach the moon instead! Thank you for listening.

>

> Love and hugs.....Jo

> xxx

[Guest guest]

While I completely understand the picture here Jo, I hope and pray that this

is a surgery of absolute last resort out of desperation. I see both sides

of the coin, but wouldn't wish amputation on anyone.

Jill

[Guest guest]

Thanks Jill, I assure you that the amputation would be an absolute

last resort option, but is something that I am prepared for and

accepting of if neccessary none the less.

I am doing okay and fighting off the fear and anger with

determination again. Oh and I am also doing some ivestigations into

climbing that bridge of mine too....so watch this space! ;-)

Love and hugs....Jo

xxx