tim

[Guest guest]

,

You are correct, it is my sister in-law. She is a tough one but after

the brain tumor was discovered it took a lot out of her, she has been

having shoulder and neck pains recently...just pray that it is not in

the bone or lungs. Every day you survive this monster is a day closer

to a cure, but your body and mind can only take so much.

Now from what I understand RSD will often spread to another part of

the body on the same side as the original injury or will spread

across to the opposite limb...sounds like that may be a possibility

in your case. My problems began after an Ulnar Nerve transposition of

my right elbow. Other than pain and weakness in my right arm and

shoulder, headaches and irritability it hasn't really taken hold

anywhere else. The numbness of my right toes and knee cap are

sporadic at best, hopefully they will stay that way.

Headaches suck, I have found that vicaden will put me into a off and

on sleep so that is somewhat of a relief but not practical. Excedrin

helps reduce the intensity but doesn't get rid of them.

Just keep the lights off and keep the noise level low and it

eventually passes. I get minor to medium intensity headaches about

three times a week, if I have been in a car or going up and down

stairs they tend to blow up into the migraine type.

But really no complaints, its always a good day when you wake up in

the morning.

Feeling pretty good today, so I will get to some laundry and maybe a

hair cut. Thanks for the support!

Tim

[Guest guest]

Tim,

Stay away from the EEG!!! Unless its absolutely necessary.....

That is the MOST PAINFUL thing someone with RSD can have done!

I had to have one done....and, quite a few members here warned me about it. So, I doubled up my pain meds that I had left from the ER one time.....I took 1 Vicodin 3 hours before the appt, and then, 2 hours later, I took 2 of them.....for a total of 3, hoping that it would help.

Well, the whole waiting room at that doctor's office heard me scream and yell and cry for 45 minutes straight. When I left, the doctor wasn't standing straight up either!!!! I kind of helped the last jolt, along with a muscle spasm.....and made sure that my foot went in the right direction!

Lets just say, his voice was a higher pitch, and, I'm hoping that he had to take the rest of the day off!

Tonia

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

These are only a few things associated with PTSD, as you can see a

lot of the symptoms are identical to RSD/CRPS. In CRPS/RDS avoidence

and other feelings are directly related to pain...not an event.

This is the best website to get information on PTSD

http://www.ncptsd.org/facts/index.html

Upsetting memories such as images or thoughts about the trauma

Feeling as if the trauma is happening again (flashbacks)

Bad dreams and nightmares

Getting upset when reminded about the trauma (by something the person

sees, hears, feels, smells, or tastes)

Anxiety or fear, feeling in danger again

Anger or aggressive feelings and feeling the need to defend oneself

Trouble controlling emotions because reminders lead to sudden

anxiety, anger, or upset

Trouble concentrating or thinking clearly

People also can have physical reactions to trauma reminders such as:

Trouble falling or staying asleep

Feeling agitated and constantly on the lookout for danger

Getting very startled by loud noises or something or someone coming

up on you from behind when you don't expect it

Feeling shaky and sweaty

Having your heart pound or having trouble breathing

Avoidence issues:

Actively avoiding trauma-related thoughts and memories

Avoiding conversations and staying away from places, activities, or

people that might remind you of the trauma

Trouble remembering important parts of what happened during the trauma

Shutting down emotionally or feeling emotionally numb

Trouble having loving feelings or feeling any strong emotions

Finding that things around you seem strange or unreal

Feeling strange

Feeling disconnected from the world around you and things that happen

to you

Avoiding situations that might make you have a strong emotional

reaction

Feeling weird physical sensations

Feeling physically numb

Not feeling pain or other sensations

Losing interest in things you used to enjoy doing

[Guest guest]

Tim= Hey, but think about how much fun we could have. Hmmm, sounds a bit like the old leper colonies though. Oh well, back to the drawing board. Barbarailducks2004 wrote:

Barbara,Not a good idea, could you imagine the traffic jams because people forgot where they were going? :)I have been lucky in the sense that I have had 2 IME's and my doctor diagnosis RSD/CRPS. The last IME doctor I went to offered to take on my case and I was tempted...he was very knowledgeable and the exam was nearly three hours. I did a search on Google for St. Louis and he was a highly rated Pain Management Doctor so I don't think he was the so called 'Company Hack' and I can't complain about the way the companies medical department is handling it. Again both their IME had the same diagnosis. I am sure they cringe at the diagnosis but I think they want an answer as well.I think the problem lies with doctors who lack knowledge of RSD or believe that all pain syndromes are physiological being thrown into the mix.

There is to much evidence out there to suggest otherwise. But again if you have a doctor who is knowledgeable and is the "team leader" he will discount these doctors or never send you to them in the first place.My plan is to let him conduct the test, they will need to be done anyway in the mean time I am going to contact my attorney and suggest that they send me to -Jewish-Washington University Hospital Pain Management facility, they are rated one of the top 35 pain management facilities in the Country and specialize in many areas including RSD/CRPS. It's a drive, but they have the team concept, one doctor is the primary and the others report their findings and then work together on the treatment. I am sure that what ever my condition is they can identify it and treat it.Well off to do some house work, again thank you all for the support and kind words!Tim> > > > > > Tim,> > > I have been know to be headache prone. Thinks it's part of RSD. > > Sometimes it feels like my eyes are going inside my head. I think > > also the sun shinning starts them out. Have learned to wear > > sunglasses and go to a quiet place. Like down by the river. I have > to > > stopp all imput to my brain. Ice helps sometime. The pain starts in > > one spot in back of head and just spreads. Just moving my head one > > way or the other sets off spasms of pain. Usually on a scale of 1 > to > > 10 being the worse it's

a 5. I also use alot of excedrin . I think > > it's the caffiene.> > > Hope your evening is restfull.> > > Laurie> > > > > > > > > >

[Guest guest]

- Not sure why you are suggesting that an EEG is harmful.....quite harmless. All it does is measure brainwaves. Are you maybe thinking instead of an EMG? Barbara Schlosser wrote:

Tim,

Stay away from the EEG!!! Unless its absolutely necessary.....

[Guest guest]

Great Tim, thanks! I don't usually go to the site so if I have trouble finding it I might ask for help...hehe. Hope you are feeling well today.

<hugs> Lori

[Guest guest]

Tim,

Just read your post about Dawn. My prayers are with her and you and your family.

Laurie

[Guest guest]

no i don't think it's irresponsible. Some day's I take life just as it comes

that day or moment. Learning to let go was a biggie for me. I liked my world

very organized. Some ways it has to be because of brain injury. But I do like a

good pajama day.

Laurie

[Guest guest]

Tim,

Sometimes I figure it out after the event. and go DAH.

Laurie

[Guest guest]

Laurie,

I do the same now, if I can remember what I was dwelling on in the

first place

>

> Tim,

> Sometimes I figure it out after the event. and go DAH.

> Laurie

[Guest guest]

Tim - I'm laughing at this point......I think Dr. Phil is the only one who makes good money. Most of us make squat......but that's an issue for another soapbox..

It's occurred to me that sometimes it's harder to share some of the "raw" stuff with the people we most dearly love. I too have a tendency to sit and sift and sort. Must be an OCD kind of thing. The only person that I left have the whole unadulterated version in my brain is a close friend who has been through some horrific medical stuff. She was hospitalized on the same floor as I was and at the same time. She was cardiac ICU waiting to have 3 heart valves replaced (a fall-out from Phen-fen / Redux) while I was in neuro ICU waiting for brain surgery. We both made it but came out the other side with a new look at what life and relationships meant to us. Both of us just spill to each other and know that it will be heard as a spilling. Friendship is a fine thing Barbarailducks2004 wrote:

JB,I share issues that have arisen, but the mental anguish or deep personal feelings I deal with alone. I don't think that it is so much that I don't want to burden anyone with it...it's that the feelings are raw and unsorted and not understood. I tend to go through them and figure out what and why they are there and try to rationalize them...once I have done that it seems that I have either worked it out or have a clearer understanding of them...I can then express them in a clear way. "We sometimes hide our pain to protect the ones we love the most"I think in many cases I hide my pain and fears to protect me, I don't want sympathy and when people express it I get very uncomfortable and withdrawn, it's more difficult for me to get things right in my mind when I worry about someone worrying about me. I don't know it

doesn't make sense sometimes.I don't know you guys on a personal level, but maybe she thought or thinks that you are burdened enough, maybe she is scared and doesn't know how to talk about it. Man I can only imagine what is going through her mind maybe she has to get it straight in her head before she can relay it to you...I can understand your feelings 100% and I understand the point you have made. Relationships are a compromise and I should probably be more open about things while they are happening as apposed to when I got them figured out...I am making the people I love feel isolated and unneeded...eventually they will quit asking or quit showing concern because they feel rejected and unappreciated and then I would start feeling that no one cares.Man this is better than Dr. Phil. Just think people pay good money for these revelations. :)Thanks,Tim> Thanks, Tim. Having also attended Catholic schools for the first 14 years of my life, I can understand what you're saying about the need to back off from rigidity and structure. Interesting for me to think about it. The two major parts of my life

are in direct opposition to each other. At work I am surrounded by chaos. The major focus of my professional life is to help others experience, identify and make sense of the chaos in their lives and then develop strategies for coping with the dysregulation (I guess I'm a professional "organizer."). My home life is about as serene as it comes.....very little chaos. When something comes along that has the potential for throwing a wrench into the mix, I typically just see it for what it is and then flow with it. I find myself actively avoiding the structuring of my leisure time...perhaps my way of side-stepping having to follow a clear path.> Re talking about RSD with others in my life, by necessity I've spoken more about it in the past year than in the almost 13 years that I've had it. The folks at work know that I have problems with my arm and hand but almost all of them just ascribe it to permanent damage from the

injury that I had. Only a few folks know about the RSD part and they are unaware of the presence of it elsewhere in my body. When everything really hit the fan last year, my sister was ballistic about the fact that I had downplayed (understatement) what had been going on for so many years. Maybe I need to reflect more on what happens with me that I tend to keep that kind of stuff so close to my chest. I'm rambling here but, like you said, that kind of posturing tends to "play havoc with those who love you." I understand her frustration. Although it was not my intention, my silence wasn't meant to be hurtful to her or anyone else. So much to think about. Thanks for raising things that gave me an> opportunity to do that. Barbara (hoping that you and others here have a good enough day)> > > >

[Guest guest]

Tim,

That was beautifully put, thank you for that e-mail. I think that all of us with RSD and probably anyone who has a chronic disease eventually learns that we have no control over what is happnening to our bodies, and we have to loosen our hold of our lives a little bit. I don't think any of us ever imagined we would be living like this, and in time we learn to adjust things in our lives - we accept the disease and we find ways to live with it. But if someone would try and explain this to me before I had RSD I don't think I would understand it - at times I'm not even sure I understand it myself. So I think maybe that is why our families have such a hard time dealing with this since they are not experiencing it first hand. I know one problem with my mother is she will not accept that I have RSD and all the other things that are wrong with me. And the times where I think she is starting to accept it she seems to lose it, and make comments like Someone has to stop this disease, you Have to get better - like she thinks I have some power over this to stop it, she won't just roll with it and adjust as we do, sometimes without even realizing it. But again, thank you for that mail, I found it truly beautiful.

<hugs> Lori

[Guest guest]

-------Original Message-------

I do not have the patience that I want yet,

Jo

=================================

Patience??? what is that?

I never have had any, and never will have......

Especially with 2 kids that follows in their grandmother's, aunt's and father's footsteps and don't listen....and I swear, the ONLY body part/senses that they use are their mouths. They have no idea what a brain, eye's, hands or feet are for...or how to use them! The only thing they do know how to use is their mouths.....which is driving me totally crazy!

Instead of looking for something....using their hands or eyes....they would rather yell asking where it is at. Instead of using their brains, and try to think or remember where they put something, they'd rather holler asking us where its at.

Instead of taking the blame for leaving stuff lying around.....they blame everyone else.

Instead of taking their time to do something, they only do stuff half-*ssed.....and then get mad because I make them go back and finish the job.

And, her teacher is not passing her to the 4th grade this year.....because she has missed too many days of school faking being sick. And when she is at school, she doesn't pay any attention there......messing around with this girl who is a very bad influence. Ever since 1st grade, when this girl started coming to this school, she has not got a whole month without her parents being called in for meetings with the Teacher and Principal at least 3 times each month. That is how much she gets into trouble......and her parents doesn't do crap about it.

They think its cute......that everything she does is cute, and that their little girl is perfect. She does no wrong...but everyone else around her is the ones that are the trouble makers.

Sami is not Reading at her level, She doesn't know how to tell time yet even though she's been learning how to tell time for the past 2 years.....

Her math sucks, her Phonics Sucks....handwriting, science.....

She's getting all C's, D's and F's....more F's than anything.

I've already told her that she no longer has a Summer Vacation. I will be having her do more homework during the summer than she had during the whole school year.... double if not Triple the work.

Then, if she can finally read, and do her Math, Science, Spelling, History (which she says is "retarded"), and her Handwriting is all better.....PLUS her mouth and Attitude......THEN I might go ahead and tell them to let her go onto the 4th grade.

Its really all up to me.....I am the only one that can keep her back or send her on. Not the teacher or Principal....just me.

And, if she doesn't change her attitude about everything.....she is S.O.L!

All I know is that I have had enough of everything that is going on around this dump...

Tonia

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Jo,

I think that we become so self consumed during times of difficulty

that it definately plays a part in our inablitiy to hear and

understand what is said.

Tim

> Tim,

>

> I am so glad you were able to spend the day with your wife and

share your

> feelings, etc.

> Listening is such an easy thing to do, yet we very rarely do it,

and when we

> do, don't often do it well. Of course, your email reminded me just

how

> important it is to listen WELL.

>

> Hugs,

> Jo

[Guest guest]

Tonia,

I am at a loss...I can only imagine the frustration that must exisit

regarding your family. I truely hope that you will find peace at home.

Tim

> Tim,

> That is really great news!

>

> You would be the first person I've ever heard to actually do

something like

> this....not many others even try to do anything like that.

>

> I'm really glad that you and your wife was able to talk....

> I just wish my husband would actually pay attention and listen for

once. I

> swear, if it doesn't involve his mother or sister, he's not

interested...

> even if it is something about his own kids.....

>

> Tonia

>

> -------Original Message-------

>

> When I first visited this site I found a place to express my

feelings

> without fear of ridicule. Better yet I was able to read so many

posts

> that help me put all the pieces together in my own life.

>

> I am again becoming the person that my wife fell in love with and

the

> person I always new I was and had been.

>

> My wife and I spent the day together yesterday and had a very deep

> discussion. We expressed our feelings and concerns but for the fist

> time in years I listened with compassion and love and immediately

saw

> how much it meant to her and how much she had needed me to do so

> yesterday, last year, and tomorrow.

>

> If you haven't figured it out yet I do not take praise very well, I

> get embarrassed, but the fact is the honesty, and compassion in

this

> support group has given me the strength and the courage to take the

> final steps in restoring the old me. It is amazing, I have

absolutely

> no fear of the future nor do I avoid the past.

>

> I do not know what else to say except Thank you all for being

honest,

> supportive and for being you!

>

> With much love and gratitude,

>

> Tim

[Guest guest]

Tim- I'm thinking that you've always been the person that your wife loved....You're the same "self" that you always were. Maybe you just needed an opportunity and a reason to put aside some of the protective gear that you've been wearing. In any event, I sincerely that the conversation was the first of many to come. You've been so impressively articulate about your feelings here. Please keep giving that generous gift of expressing yourself to your wife. What very nice news to hear that the end of my day. Barbarailducks2004 wrote:

Lori,I have to thank all of you and RSD, and as far as me being a good person I believe that I was when I was younger. I guess I could list off a bunch of excuses why I changed over the years but really they do nothing to justify some of my stupid moments in life. When my mom died I was always asked how my dad was doing and you need to take care of your dad, he needs you. I had no one ever ask how I was doing, or you need to take care of yourself. Hell I was eighteen and shortly after her death I suffered a severe injury that was life altering, yet I was still responsible for dealing with my father's emotions and his struggle to overcome her passing.For years I have carried the anger and contempt, and never ever saw the good side to anything. And as time went on I sank deeper into that pit, and really never saw a way out

of it.Now comes all of this with my sister in-law and the situation with my wife and my present physical condition. I am not trying to seek sympathy here!, but to have a discussions about dieing with my Sister who nine years earlier use to wait up for me at night so she could kiss me good night was beyond heart breaking. It brought back all those emotions and feelings that I had hid away after my mom's death and I said enough...I had to deal with it and had to deal with Dawn, and that's what I have been doing over the last year.Ultimately I am my mothers son, people figured I was going to be ok because I was or appeared to be as strong as my mom and my dad just doesn't have the ability to take care of himself emotionally let anyone else. And I have to say there were people there for me...I DIDN'T let them in.When I first visited this site I found a place to express my feelings without fear of ridicule. Better

yet I was able to read so many posts that help me put all the pieces together in my own life.I am again becoming the person that my wife fell in love with and the person I always new I was and had been.My wife and I spent the day together yesterday and had a very deep discussion. We expressed our feelings and concerns but for the fist time in years I listened with compassion and love and immediately saw how much it meant to her and how much she had needed me to do so yesterday, last year, and tomorrow.If you haven't figured it out yet I do not take praise very well, I get embarrassed, but the fact is the honesty, and compassion in this support group has given me the strength and the courage to take the final steps in restoring the old me. It is amazing, I have absolutely no fear of the future nor do I avoid the past.I do not know what else to say except Thank you all for being honest, supportive and for

being you!With much love and gratitude,Tim> Tim,> You are such a wonderful person, I feel so lucky to have met you. Your > e-mails are so inspiring and really help me to look at things in a different light. > I will try to think of it as you said - that they are incapable of giving me > the support I need - although at times it is hard to not blame them. The thing > that upset me the most was when I found out my mom said I would be a burden if > I had to move back to the area and have somebody help me. I can't help but > look at this as complete selfishness on her part, but I guess I should look at > it as she is not prepared to help me in the way that I might need help should > I lose my job or be unable to do my job anymore. I will try to forgive her > even though my

heart hurts so much, I will try to accept the fact that she cannot > help the way she is.> I want to thank you again - you always seem to have the words to help me, you > are an incredible perxon and a great friend. I hope you had a good weekend > and I'll talk to you soon.> Lori

[Guest guest]

Barbara,

I think you are right, I just lost site of it.

No worries, the armor is old and rusty and has served its purpose. I

will never be that person again, I did not realize how much people

depended on and loved the original me.

Tim

Hope your Tuesday is better than Monday!

> > Tim,

> > You are such a wonderful person, I feel so lucky to have met you.

> Your

> > e-mails are so inspiring and really help me to look at things in

a

> different light.

> > I will try to think of it as you said - that they are incapable

of

> giving me

> > the support I need - although at times it is hard to not blame

> them. The thing

> > that upset me the most was when I found out my mom said I would

be

> a burden if

> > I had to move back to the area and have somebody help me. I can't

> help but

> > look at this as complete selfishness on her part, but I guess I

> should look at

> > it as she is not prepared to help me in the way that I might need

> help should

> > I lose my job or be unable to do my job anymore. I will try to

> forgive her

> > even though my heart hurts so much, I will try to accept the fact

> that she cannot

> > help the way she is.

> > I want to thank you again - you always seem to have the words to

> help me, you

> > are an incredible perxon and a great friend. I hope you had a

good

> weekend

> > and I'll talk to you soon.

> > Lori

>

>

>

>

>

[Guest guest]

i am so glad that you and you wife were able to talk. yes it is hard to

listen. when someone is talkng i keep interupting because if i do not

say it when i thnk it. oh well i forget. i am trying to listen better.

but it is so dang hard. ow lng have you and your wife been married. i

talk to joe all the time. sometimes too much. yesterday he feel over

the shopping cart. he is hurting real bad. i am watching for blood

clots n0ow and it is scaring me. i try not to show y emotions but he

knows me to well and he says do not worry i am fine. yeah right. keep

talking to your wife. she is you comanion, your friend and you life

long shoulder. do ot eep her out. when ever one lets you down she will

be the only one there for you. so if you shut the door it will be bad.

glad to hear that you were open with her. keep up the good work. thanks

for sharing with me. love ya cathy

[Guest guest]

,

First off I hope your husband is doing better today, and you as well.

and I have been together 19 years. She was working for the Army

the summer after she graduated from high school and I was an MP on

the installation. We had a 5 year courtship and have been married for

14 years now.

Thanks for listening !

Tim

> i am so glad that you and you wife were able to talk. yes it is

hard to

> listen. when someone is talkng i keep interupting because if i do

not

> say it when i thnk it. oh well i forget. i am trying to listen

better.

> but it is so dang hard. ow lng have you and your wife been

married. i

> talk to joe all the time. sometimes too much. yesterday he feel

over

> the shopping cart. he is hurting real bad. i am watching for blood

> clots n0ow and it is scaring me. i try not to show y emotions but he

> knows me to well and he says do not worry i am fine. yeah right.

keep

> talking to your wife. she is you comanion, your friend and you life

> long shoulder. do ot eep her out. when ever one lets you down she

will

> be the only one there for you. so if you shut the door it will be

bad.

> glad to hear that you were open with her. keep up the good work.

thanks

> for sharing with me. love ya cathy

[Guest guest]

Tell yer dr u want AMBEIN!! you can ajust to wat ya need dat nite. works for me and i have had insomnia since i was born. Elevil sucks! sry just does. feel better, ameyJ B wrote:

Try taking it early in the evening like if you go to bed at 11 take it at 7. Thats what i have to do, If i dont take it by 7 to 8 i dont sleep, have a hard time falling asleep or feel i didnt get enough sleep or wake up off and on all night but if i take it at 7 i am fine the next day. weird huh lol JBilducks2004 wrote: > Tim how often and how many mgs do u take of elavil? JB10 mg of lexapro and 10 mg Amitriptyline once in the evening with 200 mg of Celebrex.Tim

[Guest guest]

Tell yer dr u want AMBEIN!! you can ajust to wat ya need dat nite. works for me and i have had insomnia since i was born. Elevil sucks! sry just does. feel better, ameyJ B wrote:

Try taking it early in the evening like if you go to bed at 11 take it at 7. Thats what i have to do, If i dont take it by 7 to 8 i dont sleep, have a hard time falling asleep or feel i didnt get enough sleep or wake up off and on all night but if i take it at 7 i am fine the next day. weird huh lol JBilducks2004 wrote: > Tim how often and how many mgs do u take of elavil? JB10 mg of lexapro and 10 mg Amitriptyline once in the evening with 200 mg of Celebrex.Tim

[Guest guest]

Amey,

Ive been on ambein before I got less sleep on it then i do on elavil. Elavil helps my migranes, depression and some sleep problems. Ambein sucked to me lol. Ive had insomina for as long as i can remember and have tried dozens of sleep meds none worked like elavil. It also aids me in other things as i said. Its got to be one of the new meds. methodone or gabitril. I have always been one to sleep a couple of hours then up for a few then back to sleep. I mean i had some sleepless nights before taking those meds, but i havent slept hardly at all since i started taking those. Its like percocet i can take it and i dont sleep most people it knocks them out. And yesterday i started iching like crazy. thats one of the reasons i cant take percocet. Dr says im alergic to it. Lorocet too. Also makes my tongue break out and swell. If i have deep depression even the elavil doesnt help me sleep ill go about 5 days without sleeping then ill sleep a whole

day. and so on. But im not that depressed right now. Well i am now im not sleeping lol but i mean not bad enough to make me not sleep. Make sense? lol i know im going on and on lol due to sleep of sleep lmao. Thanks for your sugestion though. Much love JB Amey Hoagland wrote:

Tell yer dr u want AMBEIN!! you can ajust to wat ya need dat nite. works for me and i have had insomnia since i was born. Elevil sucks! sry just does. feel better, ameyJ B wrote:

Try taking it early in the evening like if you go to bed at 11 take it at 7. Thats what i have to do, If i dont take it by 7 to 8 i dont sleep, have a hard time falling asleep or feel i didnt get enough sleep or wake up off and on all night but if i take it at 7 i am fine the next day. weird huh lol JBilducks2004 wrote: > Tim how often and how many mgs do u take of elavil? JB10 mg of lexapro and 10 mg Amitriptyline once in the evening with 200 mg of Celebrex.Tim