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Another day, another injury + NIH

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Well as the title suggests I have indeed ended up back my hospital.

I swear I see more of the staff up there than I do most of my

family. Thank God they are aware of my problems now and care more

than most of my family! ;-)

Anyway, after struggling to get ready this morning I was shuffling

down the stairs on my bum as usual, when my wrist, which was just

newly out of the cast splint on Monday, gave way on my again letting

of a huge crack in the process again. I couldn't believe it had

happened again, but fully expected to just have to reduce it, take

some pain millers and pop it back in the splint for a while. I soon

realised that it was going to be rather different this time though,

as the wrist joint was completely separated from the Ulna and the

muscles and ligaments had gone into an agonising contracture, which

was pulling and contorting my dislocated joint even further out of

position.

I could even bare touching the thing let alone manipulating it back

into position. I was feeling rather perturbed but convinced myself

that if I took some meds and rested it in a sling for a while it

would settle enough for me to pop back in. Two agonising and spasm

filled hours later I finally twigged it wasn't going to happen and

got bundled back up to A&E where the staff's panicked and shocked

reactions made me realise how stupid waiting around had been!

They started off by trying me on Entenox (gas and air) but the

contracture and pain were too severe even with me spaced out and

floating on the ceiling! So I was whisked into resus so the give me

medazilam sedation yet again. Even this wasn't straight forward

though, as due to my EDS being in full flare right now all my veins

kept collapsing on them, so it took 15 minutes to get a stable line

into me. My right arm is now nearly as sore as my left arm form all

the bruising and puncture wounds!

Thankfully the sedation worked pretty quickly afterwards and they

managed to reduce the contracture and dislocation, then sending me

off for x-rays once I had come back round a little. Everything is

back in place again, but the ligaments feel very sore and stretched,

I thought one of them was going to snap at one point it was so very

tight and tense. I am back in my plaster cats splint again tonight

and feeling very sore, battered and still rather woozy and nauseous

from the potent mix of pain killers, entenox and sedation...my

bedroom looks rather cool spinning round and round actually!

Anyway, I have to return for follow up in Ortho clinic tomorrow

morning, where I'm hoping Mac will be on duty again. He will of

course be even more horrified to see me again, but he's the only

person I really trust enough with all of this right now. I just hope

that following this latest incident he doesn't want to admit be

until I can get into hospital with Prof though. Fingers crossed I

will be back home tomorrow, but if you don't hear form me don't

panic!

Take care everyone and please know that no matter what, I will be

thinking of you and keeping you in my prayers.

Love and hugs.....Jo

xxx

P.S. I am really considering the NIH option now as I'm at my wits

end with all of this. I know I'm going to stay with Prof soon and

hope he can give me some answers, but still feel that the

specialised skills and research program they are running at NIH

would be great help for me and my consultants over here too. Anyone

know when the closing date is for this study as I'm not entirely

sure how quickly I could do it (financially) if I did manage to get

accepted. Thanks in advance.

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Jo, I'm just so sorry to hear you are going through more. Just too much for one

person. We're going to have to put you in a bubble. You just rest for now,

that's all you can do. When you are ready to think about NIH you can contact me

and I'll pass on the info to you. The study will last for 6 years. But you can

enter at any time. If you go through the whole study you'll go 3 times. But you

can attend 1, 2, or all three parts. Each time they will repeat some test, but

each time different tests will be added. Maybe somehow, we can all put our heads

together to find a way to get you financial donations to get you here. So to

answer your question the study closes sometime in 2010. But attending each

session is to your benefit but not a necessity. For now, you can travel anyway.

Take care and rest. Prays for you dear JO.

Cindylouwho

Another day, another injury + NIH

Well as the title suggests I have indeed ended up back my hospital.

I swear I see more of the staff up there than I do most of my

family. Thank God they are aware of my problems now and care more

than most of my family! ;-)

Anyway, after struggling to get ready this morning I was shuffling

down the stairs on my bum as usual, when my wrist, which was just

newly out of the cast splint on Monday, gave way on my again letting

of a huge crack in the process again. I couldn't believe it had

happened again, but fully expected to just have to reduce it, take

some pain millers and pop it back in the splint for a while. I soon

realised that it was going to be rather different this time though,

as the wrist joint was completely separated from the Ulna and the

muscles and ligaments had gone into an agonising contracture, which

was pulling and contorting my dislocated joint even further out of

position.

I could even bare touching the thing let alone manipulating it back

into position. I was feeling rather perturbed but convinced myself

that if I took some meds and rested it in a sling for a while it

would settle enough for me to pop back in. Two agonising and spasm

filled hours later I finally twigged it wasn't going to happen and

got bundled back up to A&E where the staff's panicked and shocked

reactions made me realise how stupid waiting around had been!

They started off by trying me on Entenox (gas and air) but the

contracture and pain were too severe even with me spaced out and

floating on the ceiling! So I was whisked into resus so the give me

medazilam sedation yet again. Even this wasn't straight forward

though, as due to my EDS being in full flare right now all my veins

kept collapsing on them, so it took 15 minutes to get a stable line

into me. My right arm is now nearly as sore as my left arm form all

the bruising and puncture wounds!

Thankfully the sedation worked pretty quickly afterwards and they

managed to reduce the contracture and dislocation, then sending me

off for x-rays once I had come back round a little. Everything is

back in place again, but the ligaments feel very sore and stretched,

I thought one of them was going to snap at one point it was so very

tight and tense. I am back in my plaster cats splint again tonight

and feeling very sore, battered and still rather woozy and nauseous

from the potent mix of pain killers, entenox and sedation...my

bedroom looks rather cool spinning round and round actually!

Anyway, I have to return for follow up in Ortho clinic tomorrow

morning, where I'm hoping Mac will be on duty again. He will of

course be even more horrified to see me again, but he's the only

person I really trust enough with all of this right now. I just hope

that following this latest incident he doesn't want to admit be

until I can get into hospital with Prof though. Fingers crossed I

will be back home tomorrow, but if you don't hear form me don't

panic!

Take care everyone and please know that no matter what, I will be

thinking of you and keeping you in my prayers.

Love and hugs.....Jo

xxx

P.S. I am really considering the NIH option now as I'm at my wits

end with all of this. I know I'm going to stay with Prof soon and

hope he can give me some answers, but still feel that the

specialised skills and research program they are running at NIH

would be great help for me and my consultants over here too. Anyone

know when the closing date is for this study as I'm not entirely

sure how quickly I could do it (financially) if I did manage to get

accepted. Thanks in advance.

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

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Jo

I can't believe you are hurting again so much....YOU take care and pleas

eknow you are in my thoughts & prayers. Get some rest.

Betty

Another day, another injury + NIH

> Well as the title suggests I have indeed ended up back my hospital.

> I swear I see more of the staff up there than I do most of my

> family. Thank God they are aware of my problems now and care more

> than most of my family! ;-)

>

> Anyway, after struggling to get ready this morning I was shuffling

> down the stairs on my bum as usual, when my wrist, which was just

> newly out of the cast splint on Monday, gave way on my again letting

> of a huge crack in the process again. I couldn't believe it had

> happened again, but fully expected to just have to reduce it, take

> some pain millers and pop it back in the splint for a while. I soon

> realised that it was going to be rather different this time though,

> as the wrist joint was completely separated from the Ulna and the

> muscles and ligaments had gone into an agonising contracture, which

> was pulling and contorting my dislocated joint even further out of

> position.

>

> I could even bare touching the thing let alone manipulating it back

> into position. I was feeling rather perturbed but convinced myself

> that if I took some meds and rested it in a sling for a while it

> would settle enough for me to pop back in. Two agonising and spasm

> filled hours later I finally twigged it wasn't going to happen and

> got bundled back up to A&E where the staff's panicked and shocked

> reactions made me realise how stupid waiting around had been!

>

> They started off by trying me on Entenox (gas and air) but the

> contracture and pain were too severe even with me spaced out and

> floating on the ceiling! So I was whisked into resus so the give me

> medazilam sedation yet again. Even this wasn't straight forward

> though, as due to my EDS being in full flare right now all my veins

> kept collapsing on them, so it took 15 minutes to get a stable line

> into me. My right arm is now nearly as sore as my left arm form all

> the bruising and puncture wounds!

>

> Thankfully the sedation worked pretty quickly afterwards and they

> managed to reduce the contracture and dislocation, then sending me

> off for x-rays once I had come back round a little. Everything is

> back in place again, but the ligaments feel very sore and stretched,

> I thought one of them was going to snap at one point it was so very

> tight and tense. I am back in my plaster cats splint again tonight

> and feeling very sore, battered and still rather woozy and nauseous

> from the potent mix of pain killers, entenox and sedation...my

> bedroom looks rather cool spinning round and round actually!

>

> Anyway, I have to return for follow up in Ortho clinic tomorrow

> morning, where I'm hoping Mac will be on duty again. He will of

> course be even more horrified to see me again, but he's the only

> person I really trust enough with all of this right now. I just hope

> that following this latest incident he doesn't want to admit be

> until I can get into hospital with Prof though. Fingers crossed I

> will be back home tomorrow, but if you don't hear form me don't

> panic!

>

> Take care everyone and please know that no matter what, I will be

> thinking of you and keeping you in my prayers.

>

> Love and hugs.....Jo

> xxx

>

> P.S. I am really considering the NIH option now as I'm at my wits

> end with all of this. I know I'm going to stay with Prof soon and

> hope he can give me some answers, but still feel that the

> specialised skills and research program they are running at NIH

> would be great help for me and my consultants over here too. Anyone

> know when the closing date is for this study as I'm not entirely

> sure how quickly I could do it (financially) if I did manage to get

> accepted. Thanks in advance.

>

>

>

>

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

>

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Thank you for your thoughts and support during this rather rocky

road - they are very much appreciated. I went back up to clinic

today and although Mac wasn't actually on duty he popped down all

the same, which I was grateful for. There's not really much he can

do right now though until I have been to stay with Prof, so he wants

me to go back into my plaster cast splint in the meantime. I had a

feeling he would say that as his hands are somewhat tied right now,

but I hope that once I get back form my hospital stay we can have a

good talk about the situation as I really need this darned wrist

stabilising somehow. Will arrange to have a good talk with my

wonderful mad Mac when I get home to bash out our options and decide

the best route to take.

My arm is still very sore, but at least the cast is protecting it

again now. Can't believe that I have now been in plaster/splint

since May though!

I fully expected this to happen today, but I have to admit that I

feel a little in limbo right now as everything is revolving around

this stay with Prof, meaning that things are rather on hold right

now. Fingers crossed I get my date soon so that I can get the hoped

for help and assessments and of course start making progress with my

local specialists too. Will keep you posted on how things are going

and my dates as soon as I get them.

Take care all and know I'm thinking of you all.

Love and hugs....Jo x

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Thank you for your thoughts and support during this rather rocky

road - they are very much appreciated. I went back up to clinic

today and although Mac wasn't actually on duty he popped down all

the same, which I was grateful for. There's not really much he can

do right now though until I have been to stay with Prof, so he wants

me to go back into my plaster cast splint in the meantime. I had a

feeling he would say that as his hands are somewhat tied right now,

but I hope that once I get back form my hospital stay we can have a

good talk about the situation as I really need this darned wrist

stabilising somehow. Will arrange to have a good talk with my

wonderful mad Mac when I get home to bash out our options and decide

the best route to take.

My arm is still very sore, but at least the cast is protecting it

again now. Can't believe that I have now been in plaster/splint

since May though!

I fully expected this to happen today, but I have to admit that I

feel a little in limbo right now as everything is revolving around

this stay with Prof, meaning that things are rather on hold right

now. Fingers crossed I get my date soon so that I can get the hoped

for help and assessments and of course start making progress with my

local specialists too. Will keep you posted on how things are going

and my dates as soon as I get them.

Take care all and know I'm thinking of you all.

Love and hugs....Jo x

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