Fwd: Re: Re: SED 40 & OVER....

[Guest guest]

Meant to send this to the dwarfism list.

Judy

--- Re: Re: SED 40 & OVER....

Date: Thu, 07 Apr 2011 20:52:43 -0500

From: Judy Badner <jbadner@...>

Organization: Very Little

M <petite_isla@...>

Is this the SED website?

http://www.ksginfo.org/index.html

Judy

M wrote:

> Hi ,

>

> : Question?: For All SED 40 and OVER! Why is there no information for

us dealing w/ declining mobility? Caused by arthritis & weight gain.

>

> : there isn't info on the SED website? Unfortunately I don't remember

the URL right now.

>

> : That obviously triggers hip, ankle, neck, back, problems as we get

older? I am only 44 I used to be very active person in the last 3 years I am

declining slowly and feel weaker. Yet there seems to be NO real solid

information out there in regards to what precaution we need to take or do or

people & Doctors to turn too after 40?

>

> : Same problem here and at your age I was ready for double hip

replacement.

>

> : I have heard in the past to prolong surgery as long as possible.

>

> : And I would advise otherwise. I wish I had had mine sooner. We are not

as mobile as some other more typical individuals so I don't think we cause as

much wear and tear on the prosthetic.

>

> : I have been told to take Tylenol Arthritis 2 twice a day w/ 2

Glurcosamine tablets a day or Celebrex that has wicked side effect for our

compact stomach. Yet celebrex it works for some of us! I am tempted cause I need

some relief so I can carry on with my daily chores and errand go to work.

>

> : I made due with Aleve as I prefer to keep my stomach for as long as

possible. My hips were so bad that the G.... tablets would have had no effect.

By the it was bone on bone grinding. Nothing was going to build that back up.

>

> : Would love some answers & support from anyone right now....I know I

am not the only one dealing with this alone. I am trying to open the door for a

meaningful discussion pertaining to this subject. It seems like a lot of us who

live with SED are fending for themselves when we really need is help and support

where ever we can get it from our LPA organization

>

> : while LPA does a lot, I think it cannot do all. I wish I remembered the

SED site's address and maybe someone else will see this and supply it. Maybe it

can be a topic of discussion in Anaheim when the SED group meets. And I'll be

honest and say I haven't read the SED list in a while, not sure what's

happening there.

>

> : Looking for some common sense solution's for SED's 40 & Over!

>

> : I just turned 55 in February. While I wish I was more mobile, by the

time I did have the hip replacement then the tight hamstrings kicked in. But, I

am hip pain free and the scooter of course makes a world of difference.

>

>

>

>

>

>

>

> ------------------------------------

>

> ===

>

[Guest guest]

Hello & all,

I can say I'm not SED but Pseudo, 31 years old, and I had my hip replaced last

May, almost a year!  I can tell you it feels amazing!  The excrutiating pain

is

gone and I'm almost back to my flexibility as before.  This fall I will have my

other replaced as it's going down hill.  It's not as horrible as the other, but

it's progressive and I'd love to get my life back.

They do advise waiting...if you're a regular AH person, but we're not. 

Why live in pain if you don't have to?  If your joints are anything like mine,

tylenol, advil, glucosamine can't hold a candle to the joint deterioration or

pain we experience, I was way beyond that...

Weight loss, exercize, change in diet would not do anything to help the horrible

pain either. 

I regret not having the surgery when I was 28.

The plus is my surgeon doesn't think I'll need them done again, even though I am

still young. 

I know medical issues are scary because of the unknown, but I feel us LP's go

through so much pain when sometimes we don't have to, it's just our stubborn or

scared selves that keeps us from getting help when needed.

Just my thoughts,

-

________________________________

From: Judy Badner <jbadner@...>

dwarfism Groups <dwarfism >

Sent: Thu, April 7, 2011 8:53:38 PM

Subject: Fwd: Re: Re: SED 40 & OVER....

 

Meant to send this to the dwarfism list.

Judy

--- Re: Re: SED 40 & OVER....

Date: Thu, 07 Apr 2011 20:52:43 -0500

From: Judy Badner <jbadner@...>

Organization: Very Little

M <petite_isla@...>

Is this the SED website?

http://www.ksginfo.org/index.html

Judy

M wrote:

> Hi ,

>

> : Question?: For All SED 40 and OVER! Why is there no information for

>us dealing w/ declining mobility? Caused by arthritis & weight gain.

>

> : there isn't info on the SED website? Unfortunately I don't remember the

>URL right now.

>

> : That obviously triggers hip, ankle, neck, back, problems as we get

>older? I am only 44 I used to be very active person in the last 3 years I am

>declining slowly and feel weaker. Yet there seems to be NO real solid

>information out there in regards to what precaution we need to take or do or

>people & Doctors to turn too after 40?

>

> : Same problem here and at your age I was ready for double hip

>replacement.

>

> : I have heard in the past to prolong surgery as long as possible.

>

> : And I would advise otherwise. I wish I had had mine sooner. We are not

>as mobile as some other more typical individuals so I don't think we cause as

>much wear and tear on the prosthetic.

>

> : I have been told to take Tylenol Arthritis 2 twice a day w/ 2

>Glurcosamine tablets a day or Celebrex that has wicked side effect for our

>compact stomach. Yet celebrex it works for some of us! I am tempted cause I

need

>some relief so I can carry on with my daily chores and errand go to work.

>

> : I made due with Aleve as I prefer to keep my stomach for as long as

>possible. My hips were so bad that the G.... tablets would have had no effect.

>By the it was bone on bone grinding. Nothing was going to build that back up.

>

> : Would love some answers & support from anyone right now....I know I

am

>not the only one dealing with this alone. I am trying to open the door for a

>meaningful discussion pertaining to this subject. It seems like a lot of us who

>live with SED are fending for themselves when we really need is help and

support

>where ever we can get it from our LPA organization

>

> : while LPA does a lot, I think it cannot do all. I wish I remembered the

>SED site's address and maybe someone else will see this and supply it. Maybe it

>can be a topic of discussion in Anaheim when the SED group meets. And I'll be

>honest and say I haven't read the SED list in a while, not sure what's

>happening there.

>

> : Looking for some common sense solution's for SED's 40 & Over!

>

> : I just turned 55 in February. While I wish I was more mobile, by the

>time I did have the hip replacement then the tight hamstrings kicked in. But, I

>am hip pain free and the scooter of course makes a world of difference.

>

>

>

>

>

>

>

> ------------------------------------

>

> ===

>