SORRY......TO PAULA...FROM JOANNE

[Guest guest]

a, I am so very happy to hear that you are enjoying your new home and

soon...our new pool...but I am deeply sorry to hear about your suffering. We

have been fighting this disease, I believe for about the same time..I got it in

January 1984 and for many, many years, I did OK, however the last 4 or 5 have

been so terribly difficult with the pain, more joint involvement and crippling

and loss of use as in my hands..I am down to 30% strength and use in my hands so

therefore I am unable to do many things...and even some days that includes

tending to my own daily needs...It makes me so sad, frustrated and scared...But

I am sure that I do not need to tell you a about the losses!!!!!As far as

surgrery, I have had only 2 and that was 2 fusions on my left foot. The first,

on the hindfoot was great but what patient are not generally told is that a

fusion puts added pressure on the other sections of the foot, and in this case I

then needed a 2nd fusion on the mid-foot.. I was not 2 months out of the 2nd

surgery and the pressure exerted now on the front of the foot caused all 4 toes

to dislocate and I am literally walking on the ends of my toes...LIKE MARBLES...

and so painful....but never a will I return for another surgery like that.

In fact, the first foot started with these surgeries because the posterior

tibial tendon spontaneously ruptured, requiring fusion. Now the right foot post.

tibial tendon has also ruptured as well as 4 tendons in my wrists, fingers and

hands but NO WAY.will I have surgery.... I intend to live with it as long as

possible. I will plan surgery on at least one hand to gain more use and strength

and also my left shoulder that is now drooping. I appears to have dropped out of

the socket?????and is hanging low....WOW WHAT A MESS I AM NOW THAT I THINK OF

IT. HAHAHA.

Looks like Prosorba Column will take place soon. Medicare has approved it

YEA!!!!!!

Sorry this was sooooooooo long

Please take care of yourself a...you are in my thoughts and prayers.

Always Joanne

[Guest guest]

Joanne,

Yes, we¹ve been fighting this for about the same time. I had it since the

late 70¹s but it wasn¹t until 1984 that it really reared it¹s ugly head.

It¹s to bad that surgery didn¹t help you. I¹m am very lucky that all the

surgical procedures I¹ve had except one, were successful and I¹d do them

again. I hope the Prosorba helps. I don¹t think I suffer as much as many

others in our group. Enbrel has made life tolerable. For that I am very

blessed.

a

>

>

>

> a, I am so very happy to hear that you are enjoying your new home and

> soon...our new pool...but I am deeply sorry to hear about your suffering. We

> have been fighting this disease, I believe for about the same time..I got it

> in

> January 1984 and for many, many years, I did OK, however the last 4 or 5 have

> been so terribly difficult with the pain, more joint involvement and crippling

> and loss of use as in my hands..I am down to 30% strength and use in my hands

> so

> therefore I am unable to do many things...and even some days that includes

> tending to my own daily needs...It makes me so sad, frustrated and

> scared...But

> I am sure that I do not need to tell you a about the losses!!!!!As far as

> surgrery, I have had only 2 and that was 2 fusions on my left foot. The

> first,

> on the hindfoot was great but what patient are not generally told is that a

> fusion puts added pressure on the other sections of the foot, and in this case

> I

> then needed a 2nd fusion on the mid-foot.. I was not 2 months out of the 2nd

> surgery and the pressure exerted now on the front of the foot caused all 4

> toes

> to dislocate and I am literally walking on the ends of my toes...LIKE

> MARBLES...

> and so painful....but never a will I return for another surgery like that.

> In fact, the first foot started with these surgeries because the posterior

> tibial tendon spontaneously ruptured, requiring fusion. Now the right foot

> post.

> tibial tendon has also ruptured as well as 4 tendons in my wrists, fingers and

> hands but NO WAY.will I have surgery.... I intend to live with it as long as

> possible. I will plan surgery on at least one hand to gain more use and

> strength

> and also my left shoulder that is now drooping. I appears to have dropped out

> of

> the socket?????and is hanging low....WOW WHAT A MESS I AM NOW THAT I THINK OF

> IT. HAHAHA.

>

> Looks like Prosorba Column will take place soon. Medicare has approved it

> YEA!!!!!!

> Sorry this was sooooooooo long

> Please take care of yourself a...you are in my thoughts and prayers.

> Always Joanne

>

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>

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