Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Beth... tell your kids I didn't to go to Disney till I was in my late teens.... It was really expensive.... I would like to visit Florida again, but wouldn't wanna live there... I'd miss Canada and the snow too much... hahaha Sara ------------- OP: 01/05/04 147/129/120 Yahoo! Messenger ID: thelittleprincess79 http://www.geocities.com/thelittleprincess79/ <http://www.geocities.com/thelittleprincess79/> -----Original Message----- I wanna go!! I want to live in sunny Florida!! YOu would not believe the guilt trip my 13 and 15 year old put me on because we have never been to Disney!! I would love to go but it is SOOOO expensive! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Beth... tell your kids I didn't to go to Disney till I was in my late teens.... It was really expensive.... I would like to visit Florida again, but wouldn't wanna live there... I'd miss Canada and the snow too much... hahaha Sara ------------- OP: 01/05/04 147/129/120 Yahoo! Messenger ID: thelittleprincess79 http://www.geocities.com/thelittleprincess79/ <http://www.geocities.com/thelittleprincess79/> -----Original Message----- I wanna go!! I want to live in sunny Florida!! YOu would not believe the guilt trip my 13 and 15 year old put me on because we have never been to Disney!! I would love to go but it is SOOOO expensive! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Beth... tell your kids I didn't to go to Disney till I was in my late teens.... It was really expensive.... I would like to visit Florida again, but wouldn't wanna live there... I'd miss Canada and the snow too much... hahaha Sara ------------- OP: 01/05/04 147/129/120 Yahoo! Messenger ID: thelittleprincess79 http://www.geocities.com/thelittleprincess79/ <http://www.geocities.com/thelittleprincess79/> -----Original Message----- I wanna go!! I want to live in sunny Florida!! YOu would not believe the guilt trip my 13 and 15 year old put me on because we have never been to Disney!! I would love to go but it is SOOOO expensive! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Ginny, Thanks for the info on SS. I am 46 so hopefully that doesn't put me in the denying the 2nd appeal catogory LOL. It would take a large load off my shoulders and Dwight's too. He is worried that my disability will stop paying me and SS will deny me again. I am so aware that stress causes more pain, maybe that is why my pain level doesn't drop below a 6 anytime, today I would say it is an 8. Of course falling on my left knee wasn't the best thing to do either. My youngest daughter has a real hard time with this disease she just doesn't understand why they don't get my pain level down or make me better for that matter. We have always had a good relationship but it has been strained this last year. We are starting to work things out but it's been a tough road. So your Marie has been hit with a double whammy. Finding out your Mom has this disease and being a Senior. Her poor mind must be in turmoil and it is coming out as anger, it is to bad that she won't go to counseling sounds like she needs someone to talk to. I will keep you both in my prayers. take care, Lin -- Re: Ginny Lin, Marie has been pretty good up until spring. We had the occasional fight that every mom and teen daughter goes through. Once in awhile the Dramatic fight...you know the one that I am ruining her whole life and hate her if she can't go somewhere...but those were few and far apart. But since spring she has been fighting with me almost constantly...picking fights over nothing...like taking out the trash or doing dishes. It's just gotten worse since she found out the dx of RSD in july. So I am hoping you are right and that after her senior yr...which unfortunately just started...lol...she will calm it down a bit. SSDI denies usually everyone the first time around...especially if they are no where near retirement age. SSDI denies usually everyone the 2nd appeal if they are under 45...And then you go to hearing which thankfully the judge makes the right decision 99.9% of the time. I was 33 when I applied and the age is the real factor not how badly you are disabled unfortunately. So hoping you get yours with just a second appeal...Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Lin, Thanks. I am so sorry that you hurt your knee...it never helps much when you injure something new with this disease. Hoping you can fnd something that will control your pain better. I'm sorry you are also having a strained relationship with your daughter..that must cause you stress and heartache as it does with me....Hoping you a wonderful halloween...Hugs..Ginny wrote: Ginny, Thanks for the info on SS. I am 46 so hopefully that doesn't put me in the denying the 2nd appeal catogory LOL. It would take a large load off my shoulders and Dwight's too. He is worried that my disability will stop paying me and SS will deny me again. I am so aware that stress causes more pain, maybe that is why my pain level doesn't drop below a 6 anytime, today I would say it is an 8. Of course falling on my left knee wasn't the best thing to do either. My youngest daughter has a real hard time with this disease she just doesn't understand why they don't get my pain level down or make me better for that matter. We have always had a good relationship but it has been strained this last year. We are starting to work things out but it's been a tough road. So your Marie has been hit with a double whammy. Finding out your Mom has this disease and being a Senior. Her poor mind must be in turmoil and it is coming out as anger, it is to bad that she won't go to counseling sounds like she needs someone to talk to. I will keep you both in my prayers. take care, Lin -- Re: Ginny Lin, Marie has been pretty good up until spring. We had the occasional fight that every mom and teen daughter goes through. Once in awhile the Dramatic fight...you know the one that I am ruining her whole life and hate her if she can't go somewhere...but those were few and far apart. But since spring she has been fighting with me almost constantly...picking fights over nothing...like taking out the trash or doing dishes. It's just gotten worse since she found out the dx of RSD in july. So I am hoping you are right and that after her senior yr...which unfortunately just started...lol...she will calm it down a bit. SSDI denies usually everyone the first time around...especially if they are no where near retirement age. SSDI denies usually everyone the 2nd appeal if they are under 45...And then you go to hearing which thankfully the judge makes the right decision 99.9% of the time. I was 33 when I applied and the age is the real factor not how badly you are disabled unfortunately. So hoping you get yours with just a second appeal...Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 Hi Ginny, Thank you for your concern. and I are doing better, I know some of it is because Ronnie lost his Mother before he gave her ring, she was only 43 and was a friend of mine from high school. It was sad when we were planning the wedding I kept thinking about how much fun Sue and I would have had. Okay I am going to stop talking about that before I start blubbering, The knee I fell on was the original site of my RSD, it is so painful that my medication is not helping take it down that much. I go to the doctors on Wednesday and hopefully he will have a suggestion that we can try. So watch out for the ghosts and goblins running around tonight, take care Lin -------Original Message------- Lin, Thanks. I am so sorry that you hurt your knee...it never helps much when you injure something new with this disease. Hoping you can fnd something that will control your pain better. I'm sorry you are also having a strained relationship with your daughter..that must cause you stress and heartache as it does with me....Hoping you a wonderful halloween...Hugs..Ginny Letterstyle and Graphics by FrazldMum Happy Halloween! =) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Cathy, I don't know if MS and RSD go together...MS is an auto-immune disorder that usually hits in your late 30- til late 40's and it hits mostly women. Some people get dx earlier and later then that age but the majority get dx then. Dawn knows so much more about MS then i do...so if you have any questions feel free to ask her..she would more then willing to share the info. Once I learn more i will be able to answe some questions also. Hugs..Ginnyfishthatsmiles@... wrote: hope your eye feels bette soon. last night imy left eye felt klike ithad something crawlig in it. it was blurred. this morning it hrts anditches. will have to see about it later. take care of yourself. doesms and rsd go together. cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 i have been diagnosed with opthalmetic migraines. they are migranes of the eye ball. they hurt and maks the eye tear. i also have visual migraines. this is weird. i see a picture of a snow ball but it is clear behind it and then i see pretty lights. then i had hormonal migraines. now i just have plain old migraines. tey make me so sick. and head hrts so bad/.. i also ave rsd headaches. this is when i have used my arms too much. this makes the headaches so much worse. hope this helps. cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Cathy, I can empathize with you so much with migraines. I have had migraines since I was about 16 and have tried every med for them and nothing but excedrin migraine and a double shot from starbucks works can you believe an over the counter med helps better then zomag, imatrex, fenurenal, amptriplyline, nortriptyline, even percasetts. I do have the occosional one that lasts for days and I end up getting a demerol shot for..but i can usually get them under control now without a drs help. I have never been dx with opthalmetic migraines though...I wonder if you can get vision loss like grey fog with them..and I have never been dx with visual ones either. I have had CAT scans, MRI's and EEG's to find out why i got such severe and frequent migraines...but there was nothing on any of the testing to answer that. It's strange that I have had more headaches that are not migraines since the car accident in dec of 03..I now usually get headaches caused by the neck but I get all the symptoms of a migraine with them except the pain is in the back of the head and light doesn't bother them and my eye is not involved. The pain in my right eye has lasted now for at least 3 weeks with it getting better in the morning and worsens over the day and the vision loss gets worse when the pain gets worse. I have been to the opthamologist twice and see a neurologist next tues....so hopefully someone will have an answer to what is going on and why and what will help it. In the very begining of my eye bothering me though I would have tearing in my right eye only and I usually don't tear because I have sjogren's syndrome which affects the tear ducts and saliva ducts....so I found that was weird...especially since I didn't have pain in that eye yet or vision loss..and nothing phisically was in my eye and i was not wearing make-up at the time. Thanks for the information on other types of migraines...I hope you have found something to help with them...if not I can give you some more tips of what I do to make myself feel better with them..believe me I have tried everything...lol. Hoping you brighter and better days...Hugs..Ginnyfishthatsmiles@... wrote: i have been diagnosed with opthalmetic migraines. they are migranes ofthe eye ball. they hurt and maks the eye tear. i also have visualmigraines. this is weird. i see a picture of a snow ball but it isclear behind it and then i see pretty lights. then i had hormonalmigraines. now i just have plain old migraines. tey make me so sick.and head hrts so bad/.. i also ave rsd headaches. this is when i haveused my arms too much. this makes the headaches so much worse. hopethis helps. cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Ginny - When I got my car last year I had them install an automatic starter. What a difference !!! It was great last winter having the car all warmed up when I left to go for work. Massachusetts can get so damned cold.Ginny Barrientos wrote: Lyn, Right now the weather is 38 degrees...We have a quote in Ma "if you don't like the weather wait 5 mins and it will change". Yesterday when i got up it was 28 degrees and it got up to about 34. Today the high is supposed to be 43. Fri we are supposed to get snow. The changes in the weather really bother me...and the cold bothers me. I keep saying I should move somewhere the weather stays about the same all year round and the best temp would be in the 70's...but can't seem to find that magical place...plus I would miss the Season changes too much. I always believe what doesn't kill you makes you stronger...so I guess that's why I am so strong..lol I'm still alive. I don't have a small electric banket for the car...but that is actually a good idea. But when I bought my car a yr and a half ago I got an automatic starter in it..best feature to have around here..so my car is warm in the winter when i get in. You alwa! ys seem so positive in your posts...that is a great strength to have...but never feel you can't vent and complain about anything because everyone needs to sometimes. Hope you have a great day...Hugs...Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 There are a couple of well-known Doctors with RSD. One doctor has it in his Thumb. And there are like 2 others that has it. Dr. Schwartzmann used to have a WebSite where you could email him personally......I did and got a reply back from him. But, he has deleted it since then unfortunately. Tonia -------Original Message------- Hi Pam, Maybe we can make a difference! Does anyone know of a Doctor who has RSD??? This has been on my mind for the last week. With the reality of the numbers of people who are now being diagnosed we've got to have doctors experiencing this with us. He/she would have the personal upfront knowledge of what is happening in the body together with the medical knowledge of the systems at work. Any suggestions???I have started a sheet of paper hanging my my computer to collect my questions as they float through my mind. I tried to sit down and write a list and my mind went blank so I am approaching it from a different angle. Seems I've thought about this so much that I've created a closed loop and know I must break it. If you have any questions shoot them this way on the board or personal mail. I'll start a collection that we can then refine. Remember no question is "dumb". We are going on a fishing expedition! Love to you and hope you are having one of the better pain days, Lyn ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 HI LYN,,,,, I HOPE YOUR DOING BETTER SO FAR TODAY IS FAIR TO MID LAND GOT MY FINGERS CROSSED....WELL HERE ARE SOME QUESTIONS...1 MY NIEPHEW HAS A FORM OF RSD BUT HIS EATS TH TISSUE ..2 MY NIECE HAS RSD IN HAND AND SHOULDER..3 MY OTHER NIECE HAS IT IN HER HAND AND SHOULDER BUT THEY BOTH ARE IN A TYPE OF REMISSION...DOES IT RUN IN FAMILYS IS IT GENETIC?? WHY DOES IT PICK CERTAIN PEOPLE?? HOW MANY OF US HAVE THE SAME SYMPTONS?? WHAT ARE THE DIFFERENCES AND WHAT ABOUT THE CLIMATE??? MY HAND IS VERY COLD LIKE YOU SAID AND MY LEGS...BUT THEY WERE A LITTLE BEFORE BUT NOT TO THIS EXTENT....WHAT MAKES IT KICK BACK IN WITH SUCH FORCE?? WHY DOES IT SPREAD ON SOME PEOPLE AND NOT WITH OTHERS??? THAT IS JUST SOME OF MY QUESTIONS AND LET ME KNOW WHAT YOU THINK I SEND YOU SOFT HUGS WITH LOVE PAMlynlorraine wrote: Hi Pam,I just wrote a note to Sharon asking for help to locate the author of the research paper that sounds so promising. Once I have that my Dr is very interested in reviewing the medical citations and then I plan on contacting Dr. Z as a start for his comments. As for the questions that probably float around in all of our heads I think we can each start by jotting down our own thoughts as a beginning and then we can share our lists with each other. For example I have this weird question about cold hands and cold feet. Prior to RSD I would be classified "with COLD hands and feet". I use to wonder if the fact that my circulation was such that it contributed some way to RSD grapping hold of me. My initial symptoms after my injury was hot, burning, red, swollen but eventually what I called "freeze pain" reined. So I have often wondered how many others were "cold hands warm heart) before getting RSD. Anyway that gives you an idea about some of my questions. I don't know that the answer means anything. Another question is if RA is present in the family of RSD sufferers and how many family members have RSD? Another question that puzzles me is if we are predisposed to RSD why didn't it happen during all the other injuries experienced over a life time why now and not then? What is different? Well I'm just rambling now so I'll save you and quit! Let me hear from you when you are feeling better. So sorry you hear you have been in the TC (torture chamber) That stinks! I'll send my prayers and love your way. Lyn Pamela Fredette <patches13033@y...> wrote:> HI LYN I HOPE THAT YOUR DOING GOOD I WOULD LOVE TO HELP WITH THIS THEN MAYBE I COULD FIND A DOCTOR.... WELL LET ME KNOW AND WE CAN START PUTTING A LIST TOGETHER..OK.....TODAY HAD BETTER BE A BETTER DAY YESTERDAY I HAD PAIN SOOOO BAD THAT I COULD HAVE SCREAMED..... MY LEGS WOULD NOT WORK THAT SCARD ME BUT THEY ARE DOING BETTER NOW ...HOPEFULLY I CAN GET TO MY COUNSELING APPOINTMENT AND TO THE STORE..... FROM ONE DAY TOO THE NEXT YOU DO NOT KNOW..... LET ME KNOW IF YOU FIND THE ARTICLE AND STUFF I WILL START SOME RESEARCH FROM MY END ALSO SOFT HUGS TO YOU PAM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Tonia, Just wondering if you ever discussed with your Dr and/or DR Schwartzman if they are doing anymore research in to cure or cause or if they are only treating the symptoms now? Seems not all research points to the sympathetically maintain pain model. Just wondering??? Lyn " Tonia " <iowahillbilly@h...> wrote: > > Lyn, > At that time, I was still trying to find out if I actually had RSD or not... > so that was what I was asking him......and I gave him all of my symptoms. So > yes, he did help me, because he said that yes, it did sound like I had RSD, > just not the " classic " symptoms totally, I had a few " odd ball " symptoms > along with the others. > > The Doctor I have now actually goes out 3 times a year and see's Dr. > Schwartzmann.....they know each other very well. So, because of that, I know > that I'm in very good hands (even if it IS hard to understand half of what > my doctor says!) > > Tonia > Lyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 I had purchased 200 plant bulbs with the understanding that my sister, my niece, and I were going to spend a day planting bulbs together at each of our homes. Ok, Barbara, I've got you beat. My husband, whom I love more than life itself, got the brilliant idea to plant bulbs and order 800 of them! We got them all planted, believe it or not, and of course, the deer ate most of them. I was rather looking forward to seeing that many flowers in the spring, now I'll just have to search and see if I can find ANY! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Hey!! I missed a picture of your son?? I've been ramming through emails like a madwoman, but I very rarely miss kid pics! Can you tell me which post so I can see??? Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 > Your ounce of strength can and will come from those around you, the smiles of your child when you hug her..the peaceful moments no matter how few that you find each day and when you really need it, you will find it here any time you need it. Take care and know that you have the strength to handle this. Love Donna > Thanks Ginny. I try, but sometimes I wonder where the next ounce of > strength will come from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 > Your ounce of strength can and will come from those around you, the smiles of your child when you hug her..the peaceful moments no matter how few that you find each day and when you really need it, you will find it here any time you need it. Take care and know that you have the strength to handle this. Love Donna > Thanks Ginny. I try, but sometimes I wonder where the next ounce of > strength will come from > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Barbara..lol I hope your flowers grow bigger and prettier then theirs too..lol...Hugs..GinnyBARBARA TORREY wrote: Ginny - Ain't it the truth?! I had purchased 200 plant bulbs with the understanding that my sister, my niece, and I were going to spend a day planting bulbs together at each of our homes. Well, somehow we planted theirs but they just couldn't pull off the time to get over to my place to help me out. After having moments by myself during which I alternately cried and fumed, I decided "Scr#w this. I can do it myself." Well, I did it.... and although my body is reminding me of my feat as I sit here, I'm glad that I did. (And I'm not gonna even let them look at my flowers this Spring. Na Nana Naa Naaaaaaa). BarbaraGinny Barrientos wrote: I know that feeling...but the strength always comes doesn't it? It's amazing as soon as you think ok I can't do this anymore...you find out you can and get through it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Ginny - Thanks for sharing the picture of your son. What a cutie and such a little peanut !! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Thanks...He is definetly a peanut he weighs a whopping 50 lbs now...lol. ..Hugs..GinnyBARBARA TORREY wrote: Ginny - Thanks for sharing the picture of your son. What a cutie and such a little peanut !! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 I will send it again jo..and mark it as such...Hugs..Ginnyjomal1@... wrote: Hey!! I missed a picture of your son?? I've been ramming through emails like a madwoman, but I very rarely miss kid pics! Can you tell me which post so I can see??? Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Nerve blocks can help RSD..it is proven..but it only works for some...just like all pain meds don't work for everyone..that's why there are so many pain meds on the market. I don't believe in extreme treatments such as ketamine..I certainly wouldn't go for some of the extreme treatmesnts that ae out there...but that is my opinion only...if someone else has no quality of life from RSD..who am I to tell them that it is too extreme for them. I have to start what others would call an extreme treatment for arthritis...remicade infusions...and yes they are fda approved but it is chemo therapy being infused into my body for 35 mins every 6-8 weeks..and will give me tremendous side efects and some of them are life threatening...but if i don't I won't have a quality of life that I can enjoy...or even take care of my kids.. Ginny, I will keep you in my prayers, as you to through with this experimental medication. I have thought about seeing if I would qualify for the American studies being done on Ketamine, just to see if it could help some with the pain; but haven't found anyone around here who is doing anything with Ketamine. So I hope this medication that you are going to be taking, will work for you. Take care, Lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Nerve blocks can help RSD..it is proven..but it only works for some...just like all pain meds don't work for everyone..that's why there are so many pain meds on the market. I don't believe in extreme treatments such as ketamine..I certainly wouldn't go for some of the extreme treatmesnts that ae out there...but that is my opinion only...if someone else has no quality of life from RSD..who am I to tell them that it is too extreme for them. I have to start what others would call an extreme treatment for arthritis...remicade infusions...and yes they are fda approved but it is chemo therapy being infused into my body for 35 mins every 6-8 weeks..and will give me tremendous side efects and some of them are life threatening...but if i don't I won't have a quality of life that I can enjoy...or even take care of my kids.. Ginny, I will keep you in my prayers, as you to through with this experimental medication. I have thought about seeing if I would qualify for the American studies being done on Ketamine, just to see if it could help some with the pain; but haven't found anyone around here who is doing anything with Ketamine. So I hope this medication that you are going to be taking, will work for you. Take care, Lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Nerve blocks can help RSD..it is proven..but it only works for some...just like all pain meds don't work for everyone..that's why there are so many pain meds on the market. I don't believe in extreme treatments such as ketamine..I certainly wouldn't go for some of the extreme treatmesnts that ae out there...but that is my opinion only...if someone else has no quality of life from RSD..who am I to tell them that it is too extreme for them. I have to start what others would call an extreme treatment for arthritis...remicade infusions...and yes they are fda approved but it is chemo therapy being infused into my body for 35 mins every 6-8 weeks..and will give me tremendous side efects and some of them are life threatening...but if i don't I won't have a quality of life that I can enjoy...or even take care of my kids.. Ginny, I will keep you in my prayers, as you to through with this experimental medication. I have thought about seeing if I would qualify for the American studies being done on Ketamine, just to see if it could help some with the pain; but haven't found anyone around here who is doing anything with Ketamine. So I hope this medication that you are going to be taking, will work for you. Take care, Lin Quote Link to comment Share on other sites More sharing options...
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