Re: Re: In a lot of pain :(

December 29, 2008

Hey ... insert string of curse words here, then

Grrrrrrrrrrrrrrrrrrrrrrrr then Aaaaaaaaaaaaaaaaargh. It is hard enough I am

sure to live in such

pain, but to have to defend it is just beyond belief. Know that you do have

many of us who know you speak the truth. I think people are too uncomfortable

with reality sometimes so they want to think you are exaggerating. My sister

wants think my daughter's symptoms are all " emotional. " Insert the beginning

of this email again here. Hugs, Randee

In a message dated 12/28/2008 10:46:16 P.M. Eastern Standard Time,

emaher1916@... writes:

I saw my new PT about two weeks ago and he diagnosed me with a weak

ankle. All of the muscles in and around my right ankle are

diminished. I can literally roll my right foot on its side -- when I

do now it cracks. Yuck. It's been hard " getting used to " another PT

as my PT was booked this month and so I've been left putting my trust

in someone else. I still feel leary even though Nick *my new pt* is

very knowledgable and has good bed-side manner. I see him tomorrow

afternoon.

On another note, a more frustrating one. I'm still waiting for my

Neck & Lumbar MRI. I don't know what's wrong but it seems my GP

didn't want to put through the order until she received one from my

NSG. I called three weeks ago and left a message with his assistant

requesting a confirmation call back letting me know the order had

been taken care of but no word yet. In the meantime my neck is

relasping and getting worse. I fear I will be back in PT for it and

my back soon enough after almost 2 months off. Hmm. Thanks for

listening.

With regard to the radical neurosurgery that's been proposed as

a " last resort " I see my pain doctor tomorrow and will talk it over

with him in more detail and see what he has to say. My pain is quite

terrible now and has been for the last 3 to 4 days. On a scale

from 1-10 I'm at an 11. Yuck. I'd go to the ER for treatment but I

find it silly seeing as how I see my pain doctor tomorrow. But what

does one do when they're at that point? Sometimes I just get so

bloody sick of all this. Really. I want a " new body " one that's " pain-

free. " For those who do not live with this rare condition -- like my

family for instance. I'm told to " buck up " it can't be " that

bad " " you just have to put mind over matter and suck it up " " push

through the pain " " oh it can't be that bad " " you're soooo lazy " how

many of us have " heard " these excuses or comments? No one knows what

it's like to live with chronic pain unless they've experienced it

themselves am I right?

Some days I just want to pull the covers up over my head and willow

away, not get up at all, then the depression settles in, like it has

now -- damn I hate this. I feel like giving up.

--

> >

> > I am working on getting into a pain management clinic. I do not

want

> to

> > take any more meds so that is out. I know they will suggest

steroid

> > injections and I don't want those either. I know that nerve

blocks

> > sometimes do not work and if they do they are temporary. I know

that

> > they can " kill " the nerves in the legs permentantly but I don't

know

> > how or what the side effects are. Anyone with any experience with

> > these? I'm going go be getting some PT which is good and they are

> > changing my meds around to try to help. Going to try the Cymbalta

> > (getting into a program that will pay for this) along with the

> > Neurontin and we added a muscle relaxer three x a day. Trying my

best

> > to get these pain levels down. It is wearing on me.

> >

> > Thanks,

> >

>

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December 29, 2008

Hi ....oh, I know the comments well and if they don't say it their eyes do

for them...I often say if someone could just live in my body for thirty minutes

their opinion would change...but I would never wish this on anyone so....big

sigh....I have found it especially hard this holiday with having to move and put

my house on the market etc....having two " families " to do holidays with etc....I

just got so wore out and my pain went through the roof!!!! and then feel like

crap about myself because I cant do more. Lots of negative self talk this past

week or so...

I am so very very sorry to hear that your pain is up. (((((((HUGS))))))))) Be

careful with the new PT...sounds like your gut is talking to you a bit. I hope

your pain doc has something to offer....I just dont know what we do...when we

run out of options. I have to believe that somehow, someway another door will

open for us. I know the wanting to give up feeling so well......but I have

soooooo many blessings in my life. I wish there was something I could do besides

listen but sometimes that is all we really need.

Hang in there sweetie,

Subject: Re: In a lot of pain

To: tetheredspinalcord

Date: Monday, December 29, 2008, 3:45 AM