Re: Pinkie

[Guest guest]

are you on a anti depression

meds. this disease does get us down at times. and the anxiety attacks i

ave are bad at times. i am on paxil and this does seem to help. do not

leave. cathy

[Guest guest]

Pinkie,

That is so great, I really hope you get it soon and that it works well. You have been waiting way too long, I will pray that all goes well for you.

<hugs> Lori

[Guest guest]

Believe me i know the nervous feeling of not knowing what they are gonna do and how they are gonna do it. I wish i could take all those feeling away from you. This diease is scarey all the way around. Hang in there you may be surprized at the outcome.JBPinkDay007 Time wrote:

i am trying thanks lots and yes i am happy that action is finally being taken,,,just real nervous...

Pinkie

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[Guest guest]

its so hard when u get happy and have hope, then someone comes along

and smashes it on the ground grinding into all the hope..

Pinkie

Believe me i know the nervous feeling of not knowing what they are

gonna do and how they are gonna do it. I wish i could take all those

feeling away from you. This diease is scarey all the way around.

Hang in there you may be surprized at the outcome.

JB

[Guest guest]

Im sorry Pinkie who took your glory from you when you were happy? i will smack um for ya lol with my good hand that is. Sweetie be happy ignore the ignorance of others. I was so happy you were having a few good moments dont let them take it away. My hubby treats me like a baby too. I aint allowed to even check mail when he goes out of town each week. Its only because he loves me and worrys i will fall while hes gone like i did last week and brusied my self all up and fell on my bad hand and good one and ive had to wear a brace all week on my so called good hand now. so woe is me lol but im in a good mood i just to hell with it i aint gonna let it whip me. Much Love JBpinknight007_2004 wrote:

its so hard when u get happy and have hope, then someone comes along and smashes it on the ground grinding into all the hope..PinkieBelieve me i know the nervous feeling of not knowing what they are gonna do and how they are gonna do it. I wish i could take all those feeling away from you. This diease is scarey all the way around. Hang in there you may be surprized at the outcome.JB

[Guest guest]

ugggg i have been through alot someday i will tell you more...guess kinda little steps at a time....my husband does not even like it if I cry....you know men they want to fix everything....and he keeps working hard, taking classes, and keeps getting promoted...I was afraid at times I would effect his job......they have got copies of my medical records...and thats huge....someone could write a book on me....and I have to watch dr's that call and want to use me as a ginney pig....I get those calls every now and then......guess they want to research the worst of RSD/CPRS.........................BTW I do have my dogs to protect me.....

Pinkie

> >Im sorry Pinkie who took your glory from you when you were happy? i will smack um for ya lol with my good hand that is. Sweetie be happy ignore the ignorance of others. I was so happy you were having a few good moments dont let them take it away. My hubby treats me like a baby too. I aint allowed to even check mail when he goes out of town each week. Its only because he loves me and worrys i will fall while hes gone like i did last week and brusied my self all up and fell on my bad hand and good one and ive had to wear a brace all week on my so called good hand now. so woe is me lol but im in a good mood i just to hell with it i aint gonna let it whip me. Much Love JB FREE pop-up blocking with the new MSN Toolbar – get it now!

[Guest guest]

Pinkie,

I know that what you are going thru is hard....we all do.

But, think about your grandson. What would he do without his grandma?

And, what kind of message would that send him? That when the going gets tough, commit suicide?

You need to be showing him that You need to stand up and be strong when the odds are against you.....fight for what you need.

When you do start feeling like this.....just sit down at the computer and start typing. Type out exactly what you are feeling......and then put the group addy on it, and hit send. I don't think that you are going to say anything that any of us hasn't felt at least one time or another....

Tonia

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

hi i am letting everyone know if this does not work...since i cannot take anymore..i'm giving up, and yes i did tell my dr crying..thinks that is why everyone is finally taking action...plus i am not looking good...i smell like dead skin ..and my RSD/CPRS really looks bad.. yelk..and if no block thing they will eventionly start cutting off limbs...Pinkie

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[Guest guest]

Pinkie,

As usual I am way behind in my e-mails, my hands are just not allowing me to read them at night when I'm done working. Please don't give up, we are all here for you and love you, and yes it is hard to keep going but I know your family loves you dearly. Everyone is praying for you, trying to give you advice, cheer you up when you are down - and I know there are days that none of this matters, you just want to curl up into a ball and not deal with anything of feel anything. I don't know exactly how you feel, only you know that, but I know for me being this far advance and having it take control of my whole body, sometimes I think I can't do this anymore. I'm scared and alone, so many jumbled thoughts go through my head every day - I don't know if this happens to you too, but I pray that some good thoughts and happy memories go through your head, enough to wash away all the bad thoughts that you are having. That's what I do, is try and focus on anything good, and to tell myself I can't give up for I don't know what the future holds, I can only pray more good things will come, but I have to fight through this to find out.

What are your doctors planning to do for you next? I don't know if you can suggest this but I went to my RSD Specialist Monday and this is what he is going to try for me. He is going to hospitalize me for about a week, and do I constant IV treatment of Lidocaine and possibly Ketamine <sp?>. The Lidocaine is the numbing agent they use in the nerve blocks, and the Ketamine is a strong narcotic I believe, I have to do more research, but he is only going to use a tiny bit as it is very strong. I think this is what Dr. Schwartzmann is using in his new radical treatment but with much stronger doses than what my doctor is going to use. I am so very scared, especially as he told me I will possibly be very out of it, dopey and memory loss and maybe hallucinations, but only while the treatment is happening, after it will go away. But I'm still scared and I know that I am running out of options, and they need to stop it from advancing even more and gets into my organs. But I'm going to try it and I'm going to fight this thing and hopefully win. Maybe you can bring this up to your doctor, just to talk about and see what he thinks? Please don't give up, we all have to fight together.

<Big Hugs> Lori

[Guest guest]

Pinkie,

I understand a little bit what you mean about your family not supporting you and smashing any hope you have. Tim wrote a wonderful e-mail about accepting people as they are and how some people just can't give any more than they are giving, and we have to accept that it is all they are capable of giving. His e-mail helped me alot in dealing with my mother, who is not being supportive at all. I know how much it hurts, she also said I would be a burden to her if I had to move back home - yes it hurts really bad. So I'm trying to just concentrate on myself and talk to the people who Are being supportive - mainly my sister - and I refuse to talk to my mother about this anymore. I told her last night what the doctor was going to do, and she hurt me very deeply again. I'm not sure how I am going to handle all of this but I can't have somebody bring me down, even if it is my own mother, so somehow I have to cut her out of this and only surround myself with those who do support me. Again, I don't know how I'm going to do this, I need to figure it all out, but I can't handle anyone's negativity, I have enough to deal with already. I don't know if this makes sense, it is hard to put it into words, but if my mom cannot deal with this and considers me a burden, then I don't need her in my life right now. Please don't turn away those who are helping you and who do not consider you an inconvenience, you need them to get through this.

<hugs> Lori

[Guest guest]

thank you for your support...i am trying..the sun hurts my

skin...but i try to go out a little think i will try more when the

sun is down and look at the stars.....they increased my elavil so i

am taking more kitty naps untill i get use to it...also should have

my new pain med next week...also still trying for the block..drs and

hubby doing all they canmy drs want to see me alot

now...ugggg....the appts hurt....sitting in their chairs and the car

ride, but guess i have no chice...i just want to say i hurt so

much...owie...i really do not know how i make it with all this pain..

Pinkie

> Pinkie,

> That was the reaction I was going for when I mentioned your

grandson! You

> just have to keep thinking....what would I be showing my

grandson?..

> whenever you get depressed enough to just crawl into bed and give

up.

> Thinking of him will give you the 'oomph' you need to say to

yourself " I don

> t want *his name* to think that when the going gets tough,

crawling into bed

> and shutting everyone out is the way to go. I want him to grow up

thinking

> that when something looks impossible, you find any way possible to

get

> around it. Stand up for what he believes in, and don't let nothing

get him

> down. "

>

> Remember that Pinkie. If something looks impossible to you....like

getting

> pain relief....find something to use as leverage. Use the

Internet, Family

> and friends, or whatever else....to see what would work the best

for you...

> and tell what you find to your doctor and see what he says about

it.

> Or, if you can't stand the conversation...tell your son how it

makes you

> feel. Straight out to his face, tell him. And then tell him that

if he

> wishes to have you stay in the same room, then he needs to keep

the subject

> out of the conversations, or you will leave.

>

> Depression? Stand up to that too! Find something that you really

like,

> something that can always bring a smile to your face. Have a

picture of your

> grandson with you at all times, and when you get depressed or

needs cheering

> up....look at his picture. Go outside in the sun and watch the

birds...

> breathe in the fresh air.

>

> That is the one thing you can show your grandson how to do: To

Stand up for

> himself no matter what is blocking his path in life.

>

> That would be the best thing ever to teach him.

>

> Tonia

>

[Guest guest]

my husbands friend was over last night and was making jokes of me

the worse one was amputation....

like thats funny, but i hung in and tryed to take it..

Pinkie

> Pinkie,

> I understand a little bit what you mean about your family not

supporting you

> and smashing any hope you have. Tim wrote a wonderful e-mail about

accepting

> people as they are and how some people just can't give any more

than they are

> giving, and we have to accept that it is all they are capable of

giving. His

> e-mail helped me alot in dealing with my mother, who is not being

supportive at

> all. I know how much it hurts, she also said I would be a burden

to her if I

> had to move back home - yes it hurts really bad. So I'm trying to

just

> concentrate on myself and talk to the people who Are being

supportive - mainly my

> sister - and I refuse to talk to my mother about this anymore. I

told her last

> night what the doctor was going to do, and she hurt me very deeply

again. I'm not

> sure how I am going to handle all of this but I can't have

somebody bring me

> down, even if it is my own mother, so somehow I have to cut her

out of this

> and only surround myself with those who do support me. Again, I

don't know how

> I'm going to do this, I need to figure it all out, but I can't

handle anyone's

> negativity, I have enough to deal with already. I don't know if

this makes

> sense, it is hard to put it into words, but if my mom cannot deal

with this and

> considers me a burden, then I don't need her in my life right now.

Please don't

> turn away those who are helping you and who do not consider you an

> inconvenience, you need them to get through this.

> <hugs> Lori

[Guest guest]

Pinkie - You don't have to put up with comments like that. I hope that maybe the next time you'll tell them to walk until their hat floats. barbarapinknight007_2004 wrote:

my husbands friend was over last night and was making jokes of me the worse one was amputation....like thats funny, but i hung in and tryed to take it..Pinkie

[Guest guest]

Pinkie,How old is your grandson?

My first is almost six months old and is the light of my life.. I am very, very lucky, as I get to see him very often, several times a week. My daughter and son in law (and baby) live about 20 mins. away. I cannot imagine not having him close by, I'd miss him terribly...

Matter of fact, I think I'll post a picture or two of him recently..

I hope you see your Grandbaby soon!

Hugs,

Jo

[Guest guest]

Pinkie,

I know how you feel with the headaches... I cannot remember the last time I didn't have one, it's just the severity that varies... I suffer from cluster and tension headaches.

One of the things my Dr. did tell me was that when I did sleep to make sure that I had the proper support to my neck. Failure to sleep "properly" can result in pinched/compressed nerves that will contribute to the headache.

I have one of those pillows that conform to your head and neck and it does seem to help a little.

Hugs,

Jo

[Guest guest]

oh i hurt bad today...now i remember why i do not sleep...slept more than 2 hrs last night and my migraine....feels like my head is going to explode....i see my migrane dr next week i think.....my migraine dr wants to persribe all my meds cause said the pain dr got my meds wrong....and gosh i have to go to this dr every 2 weeks now instead of 6 weeks or whenever...uggggg my eyes are very swollen and my face////thought few days ago it was allergic reaction......i am very allergic to shellfish thought i had got some sea salt, but now i think it is my migrines and nerves in my face....my husband helped me take my meds and wet washrag for my face...so i can lift my head now....i am very thankful for having him around ...today my husband is my hero.

pinkie MSN Toolbar provides one-click access to Hotmail from any Web page – FREE download!

[Guest guest]

i will try to remember that 1 thank you...sometimes now i forget to stand up for myself...kinda like i'm lost...this group is wonderful for supporting...my goal is to get my new meds next week and start feeling better, cause i want to give support back to the group....but for now big thank you...

Pinkie

>Pinkie - You don't have to put up with comments like that. I hope that maybe the next time you'll tell them to walk until their hat floats. barbara > >pinknight007_2004 wrote:my husbands friend was over last night and was making jokes of me >the worse one was amputation.... >like thats funny, but i hung in and tryed to take it.. >Pinkie Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage!

[Guest guest]

i think i will ask my husband to talk to him...and my 14 yr old son looks up to my neighbor...his job is computers and thats what my son wants to do so i think he should show a better example to my son.....you do not treat people like this...a joke is a joke , but he goes too far..and besides i physically cannot smack or kick anyone....thats why i have my dogs not only do they help take care of me opening doors...and help me walk many times i would have feel through my glass window when my german shepard braced my fall so i did not fall...kool huh...and be a compaion but also protect me.....

Pinkie

>and once again i am proud of you for not just smacking to tee total crap out of his friend. But if it had been me i wouldve said i go in to have my hand taken off in a month but that wouldve been just as wrong. You are getting stronger and stronger each day i can tell... >Much LOve JB > >pinknight007_2004 wrote: >my husbands friend was over last night and was making jokes of me >the worse one was amputation.... >like thats funny, but i hung in and tryed to take it.. >Pinkie > >

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[Guest guest]

im sorry lori

pinkie

>Pinkie, >I understand a little bit what you mean about your family not supporting you >and smashing any hope you have. Tim wrote a wonderful e-mail about accepting >people as they are and how some people just can't give any more than they are >giving, and we have to accept that it is all they are capable of giving. His >e-mail helped me alot in dealing with my mother, who is not being supportive at >all. I know how much it hurts, she also said I would be a burden to her if I >had to move back home - yes it hurts really bad. So I'm trying to just >concentrate on myself and talk to the people who Are being supportive - mainly my >sister - and I refuse to talk to my mother about this anymore. I told her last >night what the doctor was going to do, and she hurt me very deeply again. I'm not >sure how I am going to handle all of this but I can't have somebody bring me >down, even if it is my own mother, so somehow I have to cut her out of this >and only surround myself with those who do support me. Again, I don't know how >I'm going to do this, I need to figure it all out, but I can't handle anyone's >negativity, I have enough to deal with already. I don't know if this makes >sense, it is hard to put it into words, but if my mom cannot deal with this and >considers me a burden, then I don't need her in my life right now. Please don't >turn away those who are helping you and who do not consider you an >inconvenience, you need them to get through this. ><hugs> Lori Get 200+ ad-free, high-fidelity stations and LIVE Major League Baseball Gameday Audio!

[Guest guest]

my grandson has not been over think maybe a week i miss him and he loves his gamma,pappa, and uncle...i miss him...u think i should call...we have new toys for him....

Pinkie FREE pop-up blocking with the new MSN Toolbar – get it now!

[Guest guest]

i want to say thank you for all your support

pinkie

>Pinkie,

>As usual I am way behind in my e-mails, my hands are just not allowing me to >read them at night when I'm done working. Please don't give up, we are all >here for you and love you, and yes it is hard to keep going but I know your >family loves you dearly. Everyone is praying for you, trying to give you advice, >cheer you up when you are down - and I know there are days that none of this >matters, you just want to curl up into a ball and not deal with anything of feel >anything. I don't know exactly how you feel, only you know that, but I know >for me being this far advance and having it take control of my whole body, >sometimes I think I can't do this anymore. I'm scared and alone, so many jumbled >thoughts go through my head every day - I don't know if this happens to you too, >but I pray that some good thoughts and happy memories go through your head, >enough to wash away all the bad thoughts that you are having. That's what I do, >is try and focus on anything good, and to tell myself I can't give up for I >don't know what the future holds, I can only pray more good things will come, >but I have to fight through this to find out. >What are your doctors planning to do for you next? I don't know if you can >suggest this but I went to my RSD Specialist Monday and this is what he is going >to try for me. He is going to hospitalize me for about a week, and do I >constant IV treatment of Lidocaine and possibly Ketamine <sp?>. The Lidocaine is >the numbing agent they use in the nerve blocks, and the Ketamine is a strong >narcotic I believe, I have to do more research, but he is only going to use a >tiny bit as it is very strong. I think this is what Dr. Schwartzmann is using in >his new radical treatment but with much stronger doses than what my doctor is >going to use. I am so very scared, especially as he told me I will possibly be >very out of it, dopey and memory loss and maybe hallucinations, but only >while the treatment is happening, after it will go away. But I'm still scared and >I know that I am running out of options, and they need to stop it from >advancing even more and gets into my organs. But I'm going to try it and I'm going to >fight this thing and hopefully win. Maybe you can bring this up to your >doctor, just to talk about and see what he thinks? Please don't give up, we all >have to fight together. ><Big Hugs> Lori Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage!

[Guest guest]

think around 2...gosh not good with numbers anymore

pinkie

Pinkie,

>How old is your grandson? >My first is almost six months old and is the light of my life.. I am >very, very lucky, as I get to see him very often, several times a week. My >daughter and son in law (and baby) live about 20 mins. away. I cannot imagine not >having him close by, I'd miss him terribly... > >Matter of fact, I think I'll post a picture or two of him recently.. > >I hope you see your Grandbaby soon! > >Hugs, > >Jo Is your PC infected? Get a FREE online computer virus scan from McAfee® Security.

[Guest guest]

i was thinking bout getting one of those new bed pads that shape your body dont remeber the name

pinkie

>Pinkie, > >I know how you feel with the headaches... I cannot remember the last time I >didn't have one, it's just the severity that varies... I suffer from cluster >and tension headaches. > >One of the things my Dr. did tell me was that when I did sleep to make sure >that I had the proper support to my neck. Failure to sleep "properly" can >result in pinched/compressed nerves that will contribute to the headache. > >I have one of those pillows that conform to your head and neck and it does >seem to help a little. > >Hugs, >Jo Get 200+ ad-free, high-fidelity stations and LIVE Major League Baseball Gameday Audio!

[Guest guest]

Oh pinkie you have warmed my heart so much to hear you say that about hubby. Im so glad you are lettin him help you. Im so sorry you feel so bad. I would be lost without my hubby. He is so wonderful to me, When I have bad days and stay in bed which isnt much that I can stay in bed ( grandbaby lives with me). He checks on me every hour on the hour. But believe me he gets it back 3 folds when i have good days i pamper and baby him as much as I can so he never feels taken advantage of. And I tell him often How lucky I am GOD let us find each other. You are tickling me pink (hehe). Your post are so much better and I really like this u. Much Love JB PinkDay007 Time wrote:

oh i hurt bad today...now i remember why i do not sleep...slept more than 2 hrs last night and my migraine....feels like my head is going to explode....i see my migrane dr next week i think.....my migraine dr wants to persribe all my meds cause said the pain dr got my meds wrong....and gosh i have to go to this dr every 2 weeks now instead of 6 weeks or whenever...uggggg my eyes are very swollen and my face////thought few days ago it was allergic reaction......i am very allergic to shellfish thought i had got some sea salt, but now i think it is my migrines and nerves in my face....my husband helped me take my meds and wet washrag for my face...so i can lift my head now....i am very thankful for having him around ...today my husband is my hero.

pinkie

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[Guest guest]

yes maam call, grandbabys are the key to a happy life with or without pain, they are just the most precious thing on this earth....i love my kids too but its just such a different kind of love. Am I wrong ? JBPinkDay007 Time wrote:

my grandson has not been over think maybe a week i miss him and he loves his gamma,pappa, and uncle...i miss him...u think i should call...we have new toys for him....

Pinkie

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[Guest guest]

I am sorry to hear that you hurt so bad today. Me too, I can't get any doc to give me any meds and I think I am on the verge of going crazy. I also glad to hear that your husband is your hero, mine is my hero every second of every day. He is why I get up in the morning and try and endure this pain. But my resoulve is wavering and I don't know how

much more I can take. I am sleeping better since this new doc put me on 100 mg of elavil and lexapro, so there is some hope, but I am finding myself wanting to take this during the day too so I don't have to be awake. Just a down day.PinkDay007 Time wrote:

oh i hurt bad today...now i remember why i do not sleep...slept more than 2 hrs last night and my migraine....feels like my head is going to explode....i see my migrane dr next week i think.....my migraine dr wants to persribe all my meds cause said the pain dr got my meds wrong....and gosh i have to go to this dr every 2 weeks now instead of 6 weeks or whenever...uggggg my eyes are very swollen and my face////thought few days ago it was allergic reaction......i am very allergic to shellfish thought i had got some sea salt, but now i think it is my migrines and nerves in my face....my husband helped me take my meds and wet washrag for my face...so i can lift my head now....i am very thankful for having him around ...today my husband is my hero.

pinkie

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