Re: more tears

[Guest guest]

I'm horribly demoralized. I'm not even depressed over this; I think I may still

be in shock. Guess I'll go take a nap. Hugs, a

Dear a;

No words can soothe the shock of what you just heard. I know that. Just

realize we're here for you. Maybe it's just words in emails, but we are your

real friends here. You're going to be very sad about this, but once you get your

disability money rolling in, you'll feel better about yourself. That's been my

experience. I might be disabled, but I can still help financially and you will

too.

One suggestion. If Social Security gives you any flak, seriously consider

getting a lawyer to expedite your case. I really regret that I didn't. You maybe

be obviously disabled, which means they can't contest it, which is a good thing

in your favor. It will make it go much faster than if they can contest the fact

that you can't work.

One more thing. I always go to doc appointments alone, so I do realize your

husband's response was bad, but like you said, he was just blowing off steam in

his man's way. He was there for you, which is a major plus in his favor. Things

are going to be ok. It will take some time to really accept this arm thing, but

you're strong and all of us learn to live with the things we must live with,

some how or another. Love, Joan

---------------------------------

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[Guest guest]

Dear a,

I don't come to this group very often but did for some reason today.

Your post touched me. I'm sorry you are going through such a difficult

time. I wish there is something that the doctors could do to make you

well. Please know that you are in my thoughts and prayers.

Georgia

[Guest guest]

a wrote:

" a, I'm sorry, but I have to be straight with you. Do

NOT have any more surgery. Not only will I not operate on your arm,

but no self-respecting surgeon will either.

a,

Did he say why they won't operate? Did he say that operating would

hurt more than help?

Be careful there are doctors out there that will operate to get the

money.

a, I don't remember exactly what was wrong with your arm. Could

you tell me and what type of operation they did to you before on your

arm?

I am sorry for your pain

Gail

[Guest guest]

Dear a,

I'm so sorry for the bad news you received today. That doctor was certainly

lacking in bedside manners to tell you what he did. He should, at least,

have given you some hope.

We all know that docs can be wrong. I'm hoping that you will prove him

wrong.

We're all supporting you and sending you strength to get through this

nightmare. You're in my thoughts and prayers.

Love and gentle hugs,

Jane

[Guest guest]

>Gail wrote:

a, I don't remember exactly what was wrong with your arm. Could

you tell me and what type of operation they did to you before on your

arm?

Gail,

As I think I wrote, this surgeon trained with the only surgeon who was willing

to go near my arm the last two times. He said that he's shocked that I actually

have had four surgeries on the arm already (five, if you count my broken wrist,

but that's different). This doc claimed that if the surgery doesn't take after

the second time, it's wrong to go back in, because that will only make it worse

in the long run. Up till now, I'd get relief for 3-5 years and then have to go

back under the knife for the same problems.

It's bizarre--I just have peripheral neuropathies all over the right side of my

body. (I'm not diabetic.) It started in 1995, when I was cutting a salad; I was

slicing a green pepper and all of a sudden got an incredible shooting pain all

the way from my elbow to my hand.

It took forever to figure out what was wrong, but it turns out that my radial

and ulnar nerves were compressed. The surgeon broke my elbow bone, reset it,

resected both nerves--it was a horrendous operation with a very long recovery,

including months of hand therapy. Then, I had the exact same problems in 1998.

By that time, I'd moved to land and saw another surgeon, who not only

re-released the ulnar and radial nerves but also freed up my carpal tunnel and

deQuervains nerves.

Lo and behold, 2000 came around and I went to see the *ultra* hand guy in this

area. He examined me and said that he wouldn't touch me, but that I should go

see the doc in Baltimore who specializes in neuropathies. This surgeon (who I

adore, even if he is rather wacky and has a reputation for being downright weird

LOL) redid my arm again. And then again in 2002. (That's the surgery that the

doc I saw today was the assistant surgeon on.) My husband claims that after the

2002 surgery, this doc said he won't do my arm again, but I don't recall that.

I'm sure my hubby is right.

I've also had two tarsal tunnel releases, the second with a vein from my left

foot wrapped around the nerve. And two surgeries for Morton's neuromas, the last

one, this past June, unsuccessful. And just to make things even more fun, I've

needed surgery for a broken wrist, broken knee, torn knee ligament, and the

biggie, a broken femur. And no, just as I'm not diabetic, I don't have any bone

loss.

And now the trigeminal nerve in my brain (on the right side, of course) is

compressed and causing the face pain, which took me into pain management and

brought me to this group.

No one can figure out why these problems keep happening to me. In fact, the

surgeon today said that the foot doctor should NEVER have operated on my foot

with my history. Yes, I know that there are lots of doctors out there who are

just looking to cut, and I appreciate this surgeon's candor. I just wasn't happy

with what I heard!

After I broke my hip in 2002, I continued to have a lot of pain (and still have

lingering pain to this day, but bearable). I consulted with *the* hip guy at

town University Hospital, and his words to me were, " Do NOT let anyone

operate on your hip again EVER! " So at least I feel comfortable that I haven't

seen any fly-by-night docs who want to slice and dice me for the money.

I still haven't fully accepted that my face pain will be there forever, unless a

miracle cure is found. I've come to terms with the hip and foot pain--okay, so

I'll walk stairs like a toddler, and be limited in how far I can walk or how

long I can stand. But the thought of losing the use of my right arm is

terrifying to me. Maybe if I'd gotten this news without everything else going

wacko with my body, I could have accepted it better. But coming on the heels of

the face and foot, it just overwhelms me.

Somehow I doubt that I'm cried out yet. This one really got to me.

Hugs,

a

[Guest guest]

Dear a:

So sorry to hear about your new losses and all of the heart ache and pain that

goes along with it. I cried as I read your words, I guess as much for me as you!

I have not been told (yet) that certain parts won't ever get better but I know

it is coming.

Just this last 2 weeks, the RSD has spread to my other foot and ankle making

it impossible at times to walk at all. The fibro seems to be in high gear as

well and the points where I had little to no tenderness (front of chest/ neck

area and knees) are suddenly giving me problems. I can barely wear clothes

anymore - it hurts to have a bra on and my underwear feels like it is made of

really sharp iron that tears into me at the base of my spine. It's sick and

defeating. I have had to dress like a bag lady for a year and now I guess its on

to moo-moo " s or join a naked colony! LOL

Also, my husband acts the same as yours (which isn't helpful to us of course).

His anger and frustration are for the same reasons. There is no injury to see

(except the swelling, weird tye-dye skin color, and constant uncomfortableness)

and it doesn't have a cause or cure - its almost harder for those that don't

suffer sometimes to cope " appropriately " .

My issues are not exactly the same but I think we all suffer the pangs of loss,

even of the simple things like being able to reach something, carry things, hold

our children, the loss of relationships and friendships due to an unwillingness

to try to understand etc. The list is endless. No one persons' loss can really

be understood by anyone but THAT person.

However, we can share and express and even get others with similiar issues and

sadnessess and knowing that you are not alone counts for so much!

You may e-mail me any time you would care to vent or whatever. I am home full

time now so I would be sure to reply promptly.

I sincerely hope you find some peace and (eventually) acceptance. Remember,

whatever doesn't kill us, will only make you stronger!

You are stronger tonight, just by sharing!

My prayers are with you,

[Guest guest]

TSlosser wrote:

" My issues are not exactly the same but I think we all suffer the pangs

of loss, even of the simple things like being able to reach something,

carry things, hold our children, the loss of relationships and

friendships due to an unwillingness to try to understand etc. The list is

endless. No one persons' loss can really be understood by anyone but THAT

person. "

-------------

So, so true. I'm blessed in that my new husband (married 5/20/06), in spite of

what I wrote about him yesterday, has been wonderful about taking care of me. He

drives me to every doctor appointment, he takes on just about all of the

household chores, he helps me with my 17-year-old son, and most importantly, he

lets me cry on his shoulder and holds me tight in bed every night. My daughter,

who is off on her own (long story) but who I talk to several times a week and

who is coming home next week for two months, is also wonderfully supportive. It

hurts me, though, when she says, " Mom, if you need me to take care of you, I'll

come home for good. " There is NO WAY that I'd ever let either of my children

interrupt their lives to care for their mother. No way, no how.

Unfortunately, though, I only have one good friend here locally (I'm in

land). She's terrific, calling all the time and taking me out for coffee or

shopping every week or two. But I sure don't want to burden her or take

advantage of her. My other close friends are in New York and New Jersey. We talk

on the phone all the time, see each other whenever we can, but they're not HERE,

if you know what I mean. So I often feel quite isolated and lonely.

Reading the stories of others on this list often makes me feel like a selfish,

self-centered whining crybaby, as so many of you have problems far worse than

mine. I'm also in awe of how well many of you cope with your pain and

disability. I wish I were stronger, not just physically but emotionally as well.

Okay, I'm rambling and getting more maudlin by the second, so I'll stop now

and thank you for your reply and words of wisdom.

Hugs,

a