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Well fugg..... #15081498 07/25/20
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hookeye Offline OP
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Kid had dislocation (tissue disorder) and tried to get it back.
Her luck..........knee surgery required. Think it tore.

Cardiologist in 4 weeks to see what the hell is going on there.

Kid can't catch a break man.

Ehler's Danlos..........hopefully not vascular version. Am concerned w the heart thing it might be.

One hospital jaw surgery, at least a dozen outpatient jaw procedures (when it dislocates).
Both shoulder bankart repaired.
Now knee.

Plus it trashes the female stuff. Hormone spikes make dislocations more prone, ligaments get softer (already too soft).
Gonna be a chitty month til we get this med crap done.

Upset she proly won't get back in college this fall.
With the Covid I told her not to worry, proly won't be decent school crap til spring.

Had good scholatship but medical killed that.
Got her back in and more medical pulled her out. Plus the school didn't do the crap they were supposed to.
Said Fuggem and trying to patch her up enough to go to local branch.

They seem to want to help her.

Hopefully the knee gets fixed and the heart deal is something not surgical.
Repairs on joints don't heal back to what they were before, so apt to screw up and require follow up surgeries.

She has to take it easy, but also has to do some exercise to strengthen muscles to help hold things in place.
Fighting getting her healthy enough to work on maintaining it.

Just been getting worse the last 6 yrs.



Sucks, can't fix my kid. Taking forever for the gastro and main Ehlers Danlos guy to get chit done.
Covid drug it out more.

End result.............stuff they thought wrong, wasn't. So we checked some things off the list, and she's still unable to eat decent.
I got a bit crappy last Dr visit.





















Last edited by hookeye; 07/25/20.
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Re: Well fugg..... [Re: hookeye] #15081502 07/25/20
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Sorry to hear of it. Prayers sent.


USA...all the way.
Re: Well fugg..... [Re: hookeye] #15081505 07/25/20
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hookeye Offline OP
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Thanks man. Kid's pretty upset.

Aint no fixing her disorder, and they won't do female surgery that would stop hormone psikes and lessen dislocation risks due to age.

Like she's ever gonna have kids, can't work or go to school, plus could have a kid with the same crap (genetic).

My patience is about gone with the doctors.

Not married, no kids........she has all the time in the world to go to school.
But I get her wanting to stay kinda sorta in the same group moving fwd as her freinds/associations.

Delay delay delay, plus all the medical...........she's not having a good run.

Pains me to see her so unhappy.

Re: Well fugg..... [Re: hookeye] #15081507 07/26/20
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hookeye Offline OP
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Some folks have more joint space than others.
That;s what the shoulder dr thought.
Then she tore something doing mild workout, and we got it checked.
Location not where supposed to be, and he said only seen it once before, sent us to tissue disorder guy (supposed to be top 1 or 2 in nation).
Said she is classic case of Ehlers Danlos, has all the boxes checked.

Low blood volume, due to female stuff. Can only drink so much fluid, take salt........still get anemic/low blood volume, which the heart tries to counter by beating more
(adrenaline response)..........so the lifters are ticking and she's hitting the gas.

Makes for a lot of dynamics, as if a 22 yr old woman wouldn't have enough LOL
So they put her on beta blocker, lowest dose, and that helped, but made her tired. Got the timing of it such she got back to functional.
Now her BP has dropped more (hopefully not the heart deal).

She got a pic line and does saline every other day.
Its temporary, seemed to help a bit.......but with all the other crap happening.........not.
They want to do a port but her blood vessels funky w the disorder, even though they haven't classified it as vascular type yet.
Maybe it is, maybe it isn't.

Think vascular median life expectancy is 48, usually an incident before then making things bad.

Some people are just more "bendy" than others.........called double jointed or flexible.
But some are hypermobile.

This disorder often not identified. And there are varying degrees of it.

Its not some female made up BS, like the first idiot therapist tried to say. Don't get me started on how inept and quack the mental health people are.

Re: Well fugg..... [Re: hookeye] #15081510 07/26/20
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hookeye Offline OP
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So I figure she's about halfway done.
Would like her patched up, get some education and have a bit of fun before she blows out.

Maybe she will stabilize and have some chance at a semi normal life and I'll pass before her.
Not counting on it.

Don't want to burden the other kids with her, but 2 half siblings are pretty well off. And her two full siblings are decent people, love their sister.
Never asked, and won't.............but would hope they'd help with her if need be.

Just more crap to think about. All the fuggin time. 24/7

IC-A

Re: Well fugg..... [Re: hookeye] #15081512 07/26/20
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hookeye Offline OP
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Tossing this crap out for a couple reasons.........

1. vent LOL

2. somebody may have a kid with some weird stuff going on and not know about this disorder.

3. and for those so inclined, prayers for my kid.

Last edited by hookeye; 07/26/20.
Re: Well fugg..... [Re: hookeye] #15081522 07/26/20
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Words and prayed for your daughter.
Raised one by myself........ya just feel helpless sometimes

Re: Well fugg..... [Re: hookeye] #15081530 07/26/20
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hookeye Offline OP
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Thanks.

With this genetic..........no grandkids for me.
The other two have no probs, but could be 50/50 on passing it.

Not that I really ever cared about grandkids.
Just want my kids to be self supportive, decent and have a bit of fun.















Last edited by hookeye; 07/26/20.
Re: Well fugg..... [Re: hookeye] #15081534 07/26/20
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Prayers sent.


Re: Well fugg..... [Re: hookeye] #15081538 07/26/20
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Prayers sent.

Things like this make me realize I personally don’t have really have any problems to speak of.


"...if the gentlemen of Virginia shall send us a dozen of their sons, we would take great care in their education, instruct them in all we know, and make men of them." Canasatego 1744
IC-B

Re: Well fugg..... [Re: hookeye] #15081542 07/26/20
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hookeye Offline OP
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Logically, I have not failed my daughter.
None of us knew of this disorder.
Still dunno what side it came from (the ol lady's dad adopted).
Nobody on my side has it.

And not looking to place blame.
There is none.

But it sucks, knowing there's nothing going to fix my kid.
She's talked to others like her online, but there are a bunch that fake it........and that sends her into super pissed off mode.

Its a rare disorder so some are attention whoring by making claims of it on social media and other.
Told the kid help those she can and ignore the rest.

LIke a female is gonna just do that LMFAO

Its a roller coaster, every day, dunno if up or down.
Aint been exactly fun city at this fort for a while.

Can't plan anything, never know how she's gonna feel.
Now she's hobbled. Has crutches, and knows how to use them properly.
But w her disorder, that could cause some damage elsewhere.

Think sis taking her to Med One tomorrow, they aint gonna do chit.
Call shoulder doc Monday.
Proly just do video deal and ask for MRI.

Kids had about 6 of em so far.

Re: Well fugg..... [Re: hookeye] #15081544 07/26/20
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hookeye Offline OP
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Thanks guys.

However they help, they are appreciated.

Odd, I kinda suspected before she was born we'd not have good luck the 3rd time.

Eh, there's people that have stuff way worse.

Just play it by ear and see what happens.

Aint mad, not really upset...........well past the point of crying............it just takes your wind away.
A weird daily feeling of defeat.

Not weighty, but always there.

She said she's "stuck" with this messed up body.
Yup, and I'm stuck right there with her...........unable to fix or help.

BTW, kid thinks its her ACL thats fugged.


Last edited by hookeye; 07/26/20.
Re: Well fugg..... [Re: hookeye] #15081547 07/26/20
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Prayers for you brother.

Keep your chin up for her and reinforce her best you can. Let her know you'll stand by her and work it out no matter how long it takes.


Figures don't lie, But Liars figure
Assumption is the mother of mistakes
Re: Well fugg..... [Re: hookeye] #15081675 07/26/20
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Praying for your daughter.

Re: Well fugg..... [Re: hookeye] #15081787 07/26/20
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Prayers for you all, she's lucky to have folks that care. Anyone sick now has to have someone to advocate for them in the system we have now.

Re: Well fugg..... [Re: hookeye] #15081829 07/26/20
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Praying the doctors find the answers required to properly treat your daughter. Praying that you and the family find the daily strength, understanding and acceptance to help and encourage her each day. God bless her.

Re: Well fugg..... [Re: hookeye] #15081876 07/26/20
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Originally Posted by hookeye
Ehlers Danlos, has all the boxes checked.


I looked that up, not very nice schit.

Originally Posted by hookeye
Don't get me started on how inept and quack the mental health people are.


Most in the mental health are mental themselves, fugging fruitloops.

My prayers for your little girl, I hope and pray things come out as good as they can.


Paul

"I'd rather see a sermon than hear a sermon".... D.A.D.

"Because I'm President and they're not".... DJT

Joe and the Ho 2020!

molɔ̀ːn labé skýla

Re: Well fugg..... [Re: hookeye] #15081906 07/26/20
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Originally Posted by hookeye
...........unable to fix or help.


That's the worst part.

When my boy was 17 it appeared he got bit in the leg by a spider and it got infected real bad so we took him in and to my surprise he was admitted to the hospital. They tried a lot of different things but couldn't get a handle on it. after a couple of days his organs started to shut down and they kept pumping meds into him.

They admitted they didn't know exactly what was going on and they didn't know if what they were doing would help, real great feeling to know that!

long story short he finally turned around after 3 days and is fine today. I can remember the feeling of helplessness because I couldn't fix it for him, I fixed everything else but I could do nothing for my boy.

Scary times for sure.


Paul

"I'd rather see a sermon than hear a sermon".... D.A.D.

"Because I'm President and they're not".... DJT

Joe and the Ho 2020!

molɔ̀ːn labé skýla

Re: Well fugg..... [Re: hookeye] #15081915 07/26/20
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So sorry hear of her setbacks.

Youre as solid as a rock for her, just as always. That’s really the only thing reliable force she can grasp is your love and patience.

Re: Well fugg..... [Re: hookeye] #15081962 07/26/20
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Originally Posted by hookeye
Kid had dislocation (tissue disorder) and tried to get it back.
Her luck..........knee surgery required. Think it tore.

Cardiologist in 4 weeks to see what the hell is going on there.

Kid can't catch a break man.

Ehler's Danlos..........hopefully not vascular version. Am concerned w the heart thing it might be.

One hospital jaw surgery, at least a dozen outpatient jaw procedures (when it dislocates).
Both shoulder bankart repaired.
Now knee.

Plus it trashes the female stuff. Hormone spikes make dislocations more prone, ligaments get softer (already too soft).
Gonna be a chitty month til we get this med crap done.

Upset she proly won't get back in college this fall.
With the Covid I told her not to worry, proly won't be decent school crap til spring.

Had good scholatship but medical killed that.
Got her back in and more medical pulled her out. Plus the school didn't do the crap they were supposed to.
Said Fuggem and trying to patch her up enough to go to local branch.

They seem to want to help her.

Hopefully the knee gets fixed and the heart deal is something not surgical.
Repairs on joints don't heal back to what they were before, so apt to screw up and require follow up surgeries.

She has to take it easy, but also has to do some exercise to strengthen muscles to help hold things in place.
Fighting getting her healthy enough to work on maintaining it.

Just been getting worse the last 6 yrs.



Sucks, can't fix my kid. Taking forever for the gastro and main Ehlers Danlos guy to get chit done.
Covid drug it out more.

End result.............stuff they thought wrong, wasn't. So we checked some things off the list, and she's still unable to eat decent.
I got a bit crappy last Dr visit.






















I feel for you Hookeye. I truly do.

My oldest daughter has Ehlers Danlos Syndrome (EDS). She is 23, just graduated from college, and wants to be a nurse. Has had a lifetime of pain from EDS. Never has ridden a bike in her life, never played sports, and takes no risks. She has been to the ER literally 16 times just from a simple fall as that fall tears open her knees. The last time it took 23 staples to put it back together. Wears a back brace now for 10 years. Has her shoulders, hips, and ankles pop outta socket all the time. Has a nice boyfriend.

She just found out last week she has vascular EDS. The sadness in her eyes when she found out she can’t have kids was heartbreaking. When I tried to cheer her up by saying she can adopt, she said “Dad, average life expectancy for vascular EDS is 48. I don’t want to leave someone a widow and my kid an orphan.”

She and I both went to bed that night crying.


"Successful is leaving something in better shape than you inherited it in. Keep that in mind, son." Dad
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