Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 -------Original Message------- Just a little note to say hi to everyone...Pinkie ================================================================ Back at ya Pinkie!! hope that you are having a good day today... its rainy and grey skies here in Iowa, which means my body is killing me! Actually, it has been the last 2 days. I SHOULD know by now that when my body feels like this, there is a weather change coming! Tonia ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 -------Original Message------- Just a little note to say hi to everyone...Pinkie ================================================================ Back at ya Pinkie!! hope that you are having a good day today... its rainy and grey skies here in Iowa, which means my body is killing me! Actually, it has been the last 2 days. I SHOULD know by now that when my body feels like this, there is a weather change coming! Tonia ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Wow you really touched me, this sounds alot like me, with friends and dealing with pain, i forget think i dropped my brain somewhere, and forgot where i put it...........think i am around 3 or 4 years now with full body pain, so i know where you are coming from, take care and thank you for sharing with me. Pinkie > >Reply-To: RSD-CRPSofAmerica >To: RSD-CRPSofAmerica >Subject: Re: Just say hi >Date: Sat, 27 Mar 2004 18:45:25 -0000 > > > > Just a little note to say hi to everyone... > > > > Pinkie > >Hi Pinkie, >I read your story. I dont know how you got RSD or how long you have >had it. >I have had RSD for almost 5yrs: Anniversary June 30th. >It started in my right foot and has since spread up my leg and into >my right hip. I have also noticed it in my left foot/ankle but not >near as bad as the right side. >I was in an auto accident 6/30/99. I braced my right foot for the >impact. I actually thought I was going to die as it was happening. >Thankfully that didnt happen. I thought my foot was broken. After >several xrays finding no breaks or fractures, I knew something was >very wrong. I couldnt put ANY weight on my foot. >It was extremely swollen and bruised. It stayed so swollen for so >long I had to wear a slipper on that foot. No shoes would fit and if >I could have found a pair that did, I wouldnt have been able to >tolerate the pain. >I was on crutches for 1 1/2yrs and now use a cane. I was diagnosed >within 3mos which I think is why I am doing as well as I am today. >I can no longer work at all. I would do anything to work again. I >loved my job. I sold LandRovers and the person test driving one >wrecked it with me in the pass seat. >I really miss my former life. I really miss the friends that have >abandoned me. I really miss being the person I once was. >I also realize I am very blessed to have received the care I got and >to meet the people I have in this group. I am blessed to be alive. >I have pain 24/7 but have learned that no amount of pain meds is >going to make it all go away. I have learned that mind over matter >is the only way to deal with RSD and chronic pain. >I have been able to remain on the same dose of pain meds for almost >3yrs now. I am afraid of all these meds at 36yrs old and to know its >for life. The only way I have accomplished that is by learning to >live with the pain that the meds dont take away. >I know when I push myself to do more than I should, I pay for it for >days sometimes. Stress and depression can make RSD worse. I try to >not get too stressed out even tho sometimes that is impossible. >I would love to talk to you more. Feel free to email me. >I am only online during the day because I learned a long time ago if >I stay on at night, it causes more pain that keeps me from sleeping. >I live close to Louisville, KY in a small town in Indiana. >Please feel free to talk to me or ask advice or just be a new friend. >I do care about all of you here, >Rhonda > _________________________________________________________________ Get tax tips, tools and access to IRS forms – all in one place at MSN Money! http://moneycentral.msn.com/tax/home.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Good Evening Pinkie, My name is Mark and I am in Spokane Washington. You will find that my alter ego, Greybeard the Wonder Dog, makes many appearances in my place. You definitely got it right when you called this a monster. It has a way of frightening people worse than the wolfman or any other monster that I have seen. You will love the people that are here, and we are all here together. Members will do anything that they can to help you whether it is providing you with guidance or advice, or just being a glimmer of hope through the darkest night. Welcome, and Hello, Mark B Greybeard the Wonder Dog wish i had some or any good news, but sorry i do not, i am hurting real bad, full body pain and everything else that goes with this monster...l...tonight i am sad too...guess just 1 of those nites' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 and the pain is worse than anyone could ever imagine that they could have, not only have, but live with,and of course there is loneliness and fear, but have to keep the faith that there is hope, hope and help out there somewhere... Pinkie > >Reply-To: RSD-CRPSofAmerica >To: <RSD-CRPSofAmerica > >Subject: RE: Just say hi >Date: Sat, 27 Mar 2004 19:43:54 -0800 > >Good Evening Pinkie, > >My name is Mark and I am in Spokane Washington. You will find that my alter >ego, Greybeard the Wonder Dog, makes many appearances in my place. You >definitely got it right when you called this a monster. It has a way of >frightening people worse than the wolfman or any other monster that I have >seen. > >You will love the people that are here, and we are all here together. >Members will do anything that they can to help you whether it is providing >you with guidance or advice, or just being a glimmer of hope through the >darkest night. > >Welcome, and Hello, > >Mark B >Greybeard the Wonder Dog > > wish i had some or any good news, but sorry i do not, i am hurting real >bad, > full body pain and everything else that goes with this >monster...l...tonight > i am sad too...guess just 1 of those nites' > > > > >--- >Outgoing mail is certified Virus Free. >Checked by AVG anti-virus system (http://www.grisoft.com). >Version: 6.0.642 / Virus Database: 410 - Release Date: 03/24/2004 _________________________________________________________________ Get tax tips, tools and access to IRS forms – all in one place at MSN Money! http://moneycentral.msn.com/tax/home.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 , thank you i will do my best, but i do have constant full body pain so not much luck in feeling better, still wishing, begging, and praying for the block....I also hope that you have a wonderful pain free day.. Pinkie > >Reply-To: RSD-CRPSofAmerica >To: RSD-CRPSofAmerica >Subject: Re: Just say hi >Date: Sun, 28 Mar 2004 03:48:01 -0800 (PST) > > and Pinkie - Wish that you had a better night. Some of them are >awfully rough to get through. Let's hope tha today is a better day. >Barbara _________________________________________________________________ All the action. All the drama. Get NCAA hoops coverage at MSN Sports by ESPN. http://msn.espn.go.com/index.html?partnersite=espn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 I know there is always hope and i pray and never give up... Pinkie wish i had some or any good news, but sorry i do not, i am hurting real bad, full body pain and everything else that goes with this monster...l...tonight i am sad too...guess just 1 of those nites' > Pinkie, I am having one of those nights myself I am nice and comfy in my new bed, but I am in quite a bit of pain still, and I have to listen to my husband just snore away for there. :-) I agree with you this disease is a Monster. But just try to remind yourself that the disease has your body, but you still have your spirit. I know this is difficult especially when you are in a lot of pain. Take care and I hope you get some relief from the pain tonight. S. _________________________________________________________________ Find a broadband plan that fits. Great local deals on high-speed Internet access. https://broadband.msn.com/?pgmarket=en-us/go/onm00200360ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 Pinkie, I too, know that pain, the thousands of bolts of lightning coursing down through my arm and into the little fingers, and the pain that just will not go away. I also know the loneliness of not being able to properly explain what you are going through. I think we have all seen the dark side of this beast, and what it can do if you let it. Hope is not a pipe dream, but a ray of light that someone currently holds as dream, or just a budding thought that is growing in the minds of the next medical whizkids. I hope today is going a little better for you, and that the pain is greatly reduced. We all need friends around to help us keep the focus on the good things that happen, and the hope alive for what will happen tomorrow. Greybeard the Wonder Dog and the pain is worse than anyone could ever imagine that they could have, not only have, but live with,and of course there is loneliness and fear, but have to keep the faith that there is hope, hope and help out there somewhere... Pinkie --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.644 / Virus Database: 412 - Release Date: 03/26/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 i am not doing well at all today... Pinkie > >I know there is always hope and i pray and never give up... > >Pinkie > >Pinkie, >That is very good. I hope you are feeling a little better this morning, or >would is it in the afternoon where you are and it's very important to never >give up. We all have to remember don't let this monster win :-), also you >too Dawn. >take care all, > S. _________________________________________________________________ Check out MSN PC Safety & Security to help ensure your PC is protected and safe. http://specials.msn.com/msn/security.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 sorry no good new i am doing worse.. Pinkie Pinkie, I too, know that pain, the thousands of bolts of lightning coursing down through my arm and into the little fingers, and the pain that just will not go away. I also know the loneliness of not being able to properly explain what you are going through. I think we have all seen the dark side of this beast, and what it can do if you let it. Hope is not a pipe dream, but a ray of light that someone currently holds as dream, or just a budding thought that is growing in the minds of the next medical whizkids. I hope today is going a little better for you, and that the pain is greatly reduced. We all need friends around to help us keep the focus on the good things that happen, and the hope alive for what will happen tomorrow. Greybeard the Wonder Dog and the pain is worse than anyone could ever imagine that they could have, not only have, but live with,and of course there is loneliness and fear, but have to keep the faith that there is hope, hope and help out there somewhere... Pinkie _________________________________________________________________ Find a broadband plan that fits. Great local deals on high-speed Internet access. https://broadband.msn.com/?pgmarket=en-us/go/onm00200360ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 Pinkie 0 Do you have an appointment set up with your doctor? I'm concerned that you're having such a rough time of it. BarbaraPinkDay007 Time wrote: i am not doing well at all today...Pinkie>>I know there is always hope and i pray and never give up...>>Pinkie>>Pinkie,>That is very good. I hope you are feeling a little better this morning, or >would is it in the afternoon where you are and it's very important to never >give up. We all have to remember don't let this monster win :-), also you >too Dawn.>take care all,> S._________________________________________________________________Check out MSN PC Safety & Security to help ensure your PC is protected and safe. http://specials.msn.com/msn/security.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 Yes I always have appointments set up, they never stop, I am having a real hard time though, I was told by my sons wife my skin feels like plastic, and it burns like a camp fire, where the coals get real hot and red, and you roast a marshmellow on the fire, I feel like the marshmellow..that pretty much sums it up. Pinkie Pinkie 0 Do you have an appointment set up with your doctor? I'm concerned that you're having such a rough time of it. Barbara PinkDay007 wrote: i am not doing well at all today... Pinkie I know there is always hope and i pray and never give up... Pinkie Pinkie, That is very good. I hope you are feeling a little better this morning, or would is it in the afternoon where you are and it's very important to never give up. We all have to remember don't let this monster win :-), also you too Dawn. take care all, S. _________________________________________________________________ All the action. All the drama. Get NCAA hoops coverage at MSN Sports by ESPN. http://msn.espn.go.com/index.html?partnersite=espn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Rhonda, I don't think I've talked to you or to Pinkie, I'm Lori and I just wanted to say hi. I've been working so much the past week, I have over 200 e-mails, I'm so behind! I'm getting ready to go to bed but I just read this and wanted to say I completely empathize with you. I have not had it as long as you have, only since August of 2003, but what you said about missing the life and the friends that you have, etc, well I feel the same, as I'm sure everyone here does. The only thing I've kept is my job, they are being great and are letting me work from home for most of the time. However, it is getting harder and harder every day. The RSD started in my right knee and has spread to my feet, both arms from the wrist to the shoulders, my lower back and both hands. The end of the month is always really busy for me and all the typing and everything is killing me, I cry every day and wonder how I'm going to hang on. I need the money and the health insurance, otherwise I would probably give in and try to get disability and move back home. I miss my family so much, I haven't been able to fly home to see them, and every day I wonder if the struggle is worth it or am I wasting my precious days without my family...I don't know. Anyway, didn't mean for this to turn into a novel but I've read a couple of your posts and you seem like a great person, I would love to get to know you better. I'm going to try your thing about not being online at night, as soon as I get my work done, and see if that helps me sleep better, thanks for the advice! I'm off to bed now, sorry everyone, I will try to get through my e-mails eventually. I'm not ignoring anyone, I'm just working from morning to night. I hope everyone is doing well, take care....Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Pinkie, now you know can't use that big old " S " word but you could try spelling it backwards......really my new friend since I am now Queen of that word can tell you from my own experience just as rest can, that we understand how your emotions can get down so low and how your body can hurt so bad. It is not something to be leery of writing about though. This is just why you are to be here, it is to write just how your mind is thinking, what your thinking about, how your body feels, what is going on with doctors, w/c, lawyers, family, friends, any and all of those and more. Not one thing your going through, or thought that can't write about. So do not let it build up, and your thoughts keep you down, get them out to us, and someone and/or many will be able to help you get back up and fight with more strength. Hurting takes alot out of us. It can make us just want to climb into a hole and never get out, or we already think we climbed into that hole and we want out. Is both ways depending on the minute of the day. It is all scary, and at same time when you learn from others and your doctors get smarter it is still frustrating to deal with, hard to deal with but you learn to do it better all the time. Still will be scary just not as often nor for as long but takes some time to get to that point so until then, you write all you need to and don't be afraid that you are writing about the pain, write Pinkie that is best for you. Okay?!!!! I send you prayers and gentle hugs my new friend and you can write me at my home email anytime if you want to. s Momma JoAnn Re: Just say hi > wish i had some or any good news, but sorry i do not, i am hurting real bad, > full body pain and everything else that goes with this monster...l...tonight > i am sad too...guess just 1 of those nites' > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Thanks Mark, know that was for Pinkie, but just was also a blessing to me to hear those words. So thanks s Momma JoAnn RE: Just say hi Good Evening Pinkie, My name is Mark and I am in Spokane Washington. You will find that my alter ego, Greybeard the Wonder Dog, makes many appearances in my place. You definitely got it right when you called this a monster. It has a way of frightening people worse than the wolfman or any other monster that I have seen. You will love the people that are here, and we are all here together. Members will do anything that they can to help you whether it is providing you with guidance or advice, or just being a glimmer of hope through the darkest night. Welcome, and Hello, Mark B Greybeard the Wonder Dog wish i had some or any good news, but sorry i do not, i am hurting real bad, full body pain and everything else that goes with this monster...l...tonight i am sad too...guess just 1 of those nites' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 I'm with ya Pinkie, I have constant full body pain too, I wish there was something I could tell you to make you feel better. I'm trying to catch up on the e-mails everyone, but I can't type too much. My hands and wrists are so bad from working so much and I had my appointment at the reumatologist. She did the test for Fibro and my whole body is screaming in pain, even in places that didn't hurt before! So I"m not real happy. Just wanted to say hi to everyone and I hope everyone is doing well. I'm going to read more, talk soon..Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Lori I forget what your job is when have chance could you let me know? I am so sorry that you have full body rsd. Just think that is awful. Must be worst thing to happen. Wish I had some kind of hope or idea how to make it better but out of my league. Just know that I care for you and am here and offer my time and ear for you anytime. Can write me at home email any day as can anyone else that might care to.Take care my friend. Are you getting any relief at all for the pain ? s Momma JoAnn Re: Just say hi I'm with ya Pinkie, I have constant full body pain too, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 JoAnn, I'm trying to hang in there, it's been really tough for me lately. I'm not getting any relief from the pain, all they keep doing is upping my dosage and it's not helping. The reumatologist I went to said my knee was the most impressive thing she's ever seen, and mentioned cutting the nerve but I don't think I want to do that. I just keep getting worse and nobody will help me. As I type this my pointer fingers are tingly and cold, everything hurts, and I still have to get more blood work done to find out about the lupus. <Sigh> Anyway, I work for a wine distributor, I do all of the pricing for the salespeople. I put like 6 books together for them every month, each about 200 pages, so it's alot of typing, plus the pricing takes alot of concentration to make the right amount of money, etc. Thank you for listening to me vent, I hope you are doing well and I'm here for you any time too. How is doing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Lori, DON'T let them cut the nerve! Yes, it could give you pain relief for weeks, months or even a year or two....but, once that nerve grows back together....the RSD pain comes back 10 times worse!!! You have to decide if having it come back worse is worth being painless for a few weeks at least or not. Doing your job....couldn't they split what they do in between 2 of you? one of you do all of the typing, and one do the pricing? That way, it wouldn't make your hands hurt as bad....or, you could have someone else type up the main parts for you without anyone else knowing.....and you do the rest. My grandmother used to work at a place where all of the Sweepstakes went to.....you fill out a post card and send it in with the correct answer to something? Well, My grandma would be one of those that would open the envelopes and check the answers up against the true one from the Company that was doing the SweepStakes....like Keebler, Frito Lay, Smuckers....they hired this company to do the sweepstakes. My grandmother would bring home boxes upon boxes of unopened envelopes....her trunk, back seat, floor boards and passenger seat all would be full. Then, she'd drop half of them off at our house.....and my mom and I would go and see if there was any winners out of all of those. Is there any way that you could do something like that? Have a friend do the typing, like the descriptions of the wines and the like....and you could do just the pricing and all of that since you know exactly how to do it and its easier that way.....then, all you'd have to do is put it together and hand it in. No one but you and your friend would know that you didn't type it all up......you'd still be the only one doing your job as far as your boss knows. Tonia -------Original Message------- JoAnn, I'm trying to hang in there, it's been really tough for me lately. I'm not getting any relief from the pain, all they keep doing is upping my dosage and it's not helping. The reumatologist I went to said my knee was the most impressive thing she's ever seen, and mentioned cutting the nerve but I don't think I want to do that. I just keep getting worse and nobody will help me. As I type this my pointer fingers are tingly and cold, everything hurts, and I still have to get more blood work done to find out about the lupus. <Sigh> Anyway, I work for a wine distributor, I do all of the pricing for the salespeople. I put like 6 books together for them every month, each about 200 pages, so it's alot of typing, plus the pricing takes alot of concentration to make the right amount of money, etc. Thank you for listening to me vent, I hope you are doing well and I'm here for you any time too. How is doing? ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Thanks Jeannie!! I never thought about that, I will definitely check into it, what a great idea!!! For real, thanks so much, I will let you know what I find out. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Lori, There is a program that you can buy that does the typig for you. You download it to your comp and just talk i hear its not expensive but im not sure. Might be a option for you I know funds are tight but just might be worth it for the shorter hours and not aving to stress to get it done. Jeannie AlwayzLoRi@... wrote: Tonia, Thanks for the advice, I looked at her like "I don't think so" when she said that but it is good to have the real information if they press it. It just didn't sound good to me at all! As for work, if I did that I would have to do it behind their back like you suggested. They are doing so much for me already, letting me work at home, I couldn't ask for a typist. Plus I used to make all the copies but somebody does that for me now so I dont have to do it. Sadly I don't really have a freind here that could do it. The friends I do have work themselves. It's just frustrating because I get a head start so I can spread out the typing and every month something happens to where the last week I'm rushed and working 12 hour days to get it done. If I could afford to pay someone I would but with medical bills, etc, I can't. But thanks for the advice, if I can think of anyone I will ask them. Have a great day! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 JoAnn, That is on my list of things to do today, I will let you know what I find out. Hugs, Lori Quote Link to comment Share on other sites More sharing options...
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