Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 ThanksGinny i'm trying to take care of myself. It's kind of hard when I'm having to concentrate to give her meds etc. We did get the new med today, so we'll see how it goes. She sees the pain doc again on Tues. In a message dated 11/11/2004 12:01:22 PM Eastern Standard Time, RSD-CRPSofAmerica writes: Subject: Re: Jo,I know it's so hard when you are so worried about your daughter to take care of yourself...but please don't forget to take care of you also. I am so sorry that the pharmacy was making it harder on you then it should have been to get the meds for your daughter..glad you found another one in your area that could help. Hope you have a less stressful and less painful 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 HI LYN COUNT ME IN TOO I HAVE ALL THESE QUESTIONS ALSO SURE WOULD LIKE TO KNOW SO FIRE AWAY...MAYBE WE COULD TEACH THE DOCTORS A THING OR TWO....SOFT HUGS PAMlynlorraine wrote: Yes, let's explore this. I'll be thinking of questions that have been floating around in my head. Hope your visit with everyone is wonderful. I think you are there right this minute!LynGinny Barrientos <hisloss123@y...> wrote:> Lyn,> > I am ready to find out all the answers to these> questions..Maybe we should come up with a list of> questions for all to answer in the group and compile> the information we get and see how many people here> have the same disorders other then RSD and how long> they have been dx with everything including RSD and at> what age they were dx with what they have been dealing> with all of this. It will be interesting to see what> everyone answers...I don't know how we can do a study> annomously...so if people didn't want to participate> they wouldn't have to. Let me know what you think and> we can come up with a list of questions that we would> like answered. Hoping you a wonderful snowless> day...Hugs..Ginny> --- lynlorraine <lynlorraine@y...> wrote:> > > > > Ginny,> > > > I wonder about all this too. I think that I should> > be a doctor > > because I really want to figure this out. I have so> > many questions, > > so many observations that I feel like a detective.> > Why do we get it > > and others don't? What body makeup do we have that> > promotes this > > bizarre reaction to injury. What is the mechanism> > and how does it > > relate to other health issues and yes I want to do> > the study > > myself.........so I guess you've got a partner> > whenever you are > > ready to jump in! LOL Lyn> > > > Ginny Barrientos <hisloss123@y...> wrote:> > The more we all talk about other syndromes and> > diseases it seems > > the more we all have in common...wondering if there> > is a correlation > > to why we all got RSD. Wish a dr would study why> > some people get > > RSD and why others don't and if there is a> > predisposition and that's > > why. I guess I should have been a dr...Maybe then I> > coud do the > > study myself...lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 HI LYN COUNT ME IN TOO I HAVE ALL THESE QUESTIONS ALSO SURE WOULD LIKE TO KNOW SO FIRE AWAY...MAYBE WE COULD TEACH THE DOCTORS A THING OR TWO....SOFT HUGS PAMlynlorraine wrote: Yes, let's explore this. I'll be thinking of questions that have been floating around in my head. Hope your visit with everyone is wonderful. I think you are there right this minute!LynGinny Barrientos <hisloss123@y...> wrote:> Lyn,> > I am ready to find out all the answers to these> questions..Maybe we should come up with a list of> questions for all to answer in the group and compile> the information we get and see how many people here> have the same disorders other then RSD and how long> they have been dx with everything including RSD and at> what age they were dx with what they have been dealing> with all of this. It will be interesting to see what> everyone answers...I don't know how we can do a study> annomously...so if people didn't want to participate> they wouldn't have to. Let me know what you think and> we can come up with a list of questions that we would> like answered. Hoping you a wonderful snowless> day...Hugs..Ginny> --- lynlorraine <lynlorraine@y...> wrote:> > > > > Ginny,> > > > I wonder about all this too. I think that I should> > be a doctor > > because I really want to figure this out. I have so> > many questions, > > so many observations that I feel like a detective.> > Why do we get it > > and others don't? What body makeup do we have that> > promotes this > > bizarre reaction to injury. What is the mechanism> > and how does it > > relate to other health issues and yes I want to do> > the study > > myself.........so I guess you've got a partner> > whenever you are > > ready to jump in! LOL Lyn> > > > Ginny Barrientos <hisloss123@y...> wrote:> > The more we all talk about other syndromes and> > diseases it seems > > the more we all have in common...wondering if there> > is a correlation > > to why we all got RSD. Wish a dr would study why> > some people get > > RSD and why others don't and if there is a> > predisposition and that's > > why. I guess I should have been a dr...Maybe then I> > coud do the > > study myself...lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 , 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. Sometimes one min at a time never mind taking it one day at a time. Glad your daughter is getting some relief from the creams...now it's your turn to get some relief. I also have my dominant hand and arm affected..and I have alot of atrophy now and can barely use my hand to write...and never mind other things. I can squeeze a whole whopping 1/3 of a lb with it and lift 3 lbs. I have lost strength, dexterrity and lots of muscle. I have been doing all my PT and OT exercises at home for the last 6 months...but nothing has improved. I just bought a stress ball it's shaped more like an egg and it's supposed to be able to strengthen the hand muscle...hoping it does..so i use it while watching tv. Do you still go to pt and ot or do it on your own like me? I know how hard it is not to have full use of the dominant hand and arm especially since my left hand is also affected and I can not learn to use my left hand to take over what my right hand used to be able to do. Hope you have a Great Thanksgiving..and that you get some much needed relief from pain...Hugs..GinnyKM86@... wrote: Thanks Ginny. I try, but sometimes I wonder where the next ounce of strength will come from In a message dated 11/22/2004 4:01:03 AM Eastern Standard Time, RSD-CRPSofAmerica writes: ...you are a strong person...and from reading your posts I get the feeling you are a very wonderful, caring compassionate mother and your daughter is lucky to have you for a mother. You have very good insight it seems when it comes to what your daughter needs...maybe you having RSD will help you know what your daughter is going through now and you can help her more then if you didn't have the RSD yourself. Things always happen for a reason..you may never know what that reason is...but usually it's because you can become a better person despite all you have been through and have to endure...so keep on hoping and have faith...Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 , 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. Sometimes one min at a time never mind taking it one day at a time. Glad your daughter is getting some relief from the creams...now it's your turn to get some relief. I also have my dominant hand and arm affected..and I have alot of atrophy now and can barely use my hand to write...and never mind other things. I can squeeze a whole whopping 1/3 of a lb with it and lift 3 lbs. I have lost strength, dexterrity and lots of muscle. I have been doing all my PT and OT exercises at home for the last 6 months...but nothing has improved. I just bought a stress ball it's shaped more like an egg and it's supposed to be able to strengthen the hand muscle...hoping it does..so i use it while watching tv. Do you still go to pt and ot or do it on your own like me? I know how hard it is not to have full use of the dominant hand and arm especially since my left hand is also affected and I can not learn to use my left hand to take over what my right hand used to be able to do. Hope you have a Great Thanksgiving..and that you get some much needed relief from pain...Hugs..GinnyKM86@... wrote: Thanks Ginny. I try, but sometimes I wonder where the next ounce of strength will come from In a message dated 11/22/2004 4:01:03 AM Eastern Standard Time, RSD-CRPSofAmerica writes: ...you are a strong person...and from reading your posts I get the feeling you are a very wonderful, caring compassionate mother and your daughter is lucky to have you for a mother. You have very good insight it seems when it comes to what your daughter needs...maybe you having RSD will help you know what your daughter is going through now and you can help her more then if you didn't have the RSD yourself. Things always happen for a reason..you may never know what that reason is...but usually it's because you can become a better person despite all you have been through and have to endure...so keep on hoping and have faith...Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 , 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. Sometimes one min at a time never mind taking it one day at a time. Glad your daughter is getting some relief from the creams...now it's your turn to get some relief. I also have my dominant hand and arm affected..and I have alot of atrophy now and can barely use my hand to write...and never mind other things. I can squeeze a whole whopping 1/3 of a lb with it and lift 3 lbs. I have lost strength, dexterrity and lots of muscle. I have been doing all my PT and OT exercises at home for the last 6 months...but nothing has improved. I just bought a stress ball it's shaped more like an egg and it's supposed to be able to strengthen the hand muscle...hoping it does..so i use it while watching tv. Do you still go to pt and ot or do it on your own like me? I know how hard it is not to have full use of the dominant hand and arm especially since my left hand is also affected and I can not learn to use my left hand to take over what my right hand used to be able to do. Hope you have a Great Thanksgiving..and that you get some much needed relief from pain...Hugs..GinnyKM86@... wrote: Thanks Ginny. I try, but sometimes I wonder where the next ounce of strength will come from In a message dated 11/22/2004 4:01:03 AM Eastern Standard Time, RSD-CRPSofAmerica writes: ...you are a strong person...and from reading your posts I get the feeling you are a very wonderful, caring compassionate mother and your daughter is lucky to have you for a mother. You have very good insight it seems when it comes to what your daughter needs...maybe you having RSD will help you know what your daughter is going through now and you can help her more then if you didn't have the RSD yourself. Things always happen for a reason..you may never know what that reason is...but usually it's because you can become a better person despite all you have been through and have to endure...so keep on hoping and have faith...Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 Lin...don't worry about it..I misread things all the time..especially when my pain level is higher...it's hard to concentrate sometimes. I am glad you caught their mistake...if you didn't you would be in trouble when you ran out of meds...hope you have a great day...Hugs..Ginny wrote: Ginny, Sorry about that, it is very easy to misread what is written. I was trying to tell my doctor that I didn't have enough methadone to last me until the 14th is when the new prescription is, I couldn't figure out why until I got home and looked at my prescription bottle and it had 240 tablets I am taking 9 a day well 9 times 30 is 270 not 240. Then I looked at the new one and they are bumping me up to 10 a day, for 30 days and again there is 240 tablets, I think they forget to change the number of pills and that is what the pharmacists have to go by, so I called and they are writing me new prescriptions. They actually admitted that it was their error, they are very good about things like that, they don't want us having to have an appointment just because they aren't given me the correct amount of medicines to last me until the next appointment. Anyway I am looking at several things, including a pump, because I can't stay at this level of pain forever. So I hope you have a good evening, I think I am going to take a nap along with my granddaughter. take care, Lin -------Original Message------- Lin, I'm sorry you must have misread what I wrote..I am starting an fda approved treatment for arthritis...but it has extreme side effects since it is a chemo therapy drug. this treatment should help with the optic neuritis, RA and psoriatic arthritis and has a bonus that is helps psoriasis. I was on methatrexate when it was still an experimental drug...which is now widely used to treat RA. I hope you find something that isn't as extreme as ketamine to help you...I hope their is something more conventional first that could help you....Hope you have a great day...Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
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