Re: Ginny

[Guest guest]

Lin,

Marie and I have that kind of relationship now...the calm between the storms almost. A huge fight then The whole you hate me...you wanna ruin my life...I am an adult and you can't control me anymore..then a nice talk once she has calmed down...good for a day or so maybe and then the same fight over again. I have told her to use the door alot in the last few months...I never thought I would actually feel like I would want to have my daughter leave home...but I find myself wishing she would go on her own...which then I feel tremendously guilty about. But with all the fighting and the stress it brings on me..it just causes alot of flare ups and pain. i keep telling her this is the time to enjoy yourself not a time for all this anger and wanting to fight with me over every little thing. I pick my battles and have since she was probably 12 or 13. We didn't ever fight like we have been lately. I know she is angry about me having

RSD...and won't talk about it. She blames me for gettiing RSD and not being able to do alot of things I used to do be able to do. She also was used to me making a very good living so being on SSDI cramps her lifestyle. She wants everything to be back to when I was healthy and could work and blames me for not being able to. It's become so stressful that I am now hoping she goes away to college instead of the local college so she can actually live away next year. I have also tried to get her into couseling...but she refuses...I just know holding in all her feelings and becoming angry instead is just going to make her life miserable...and it seems she just wants to be miserable. Oh well enough of me venting about my daughter...hope you had a better day...Hugs..Ginny wrote:

Ginny,

She is a senior, and there is this disease that overcomes the most laid back kid and turns them into a spoiled rotten child. This disease is called Senioritis, and it is only going to get worse as the school year continues. I heard that line so many times that I finally told her there's the door if you are such an adult then go be on, of course this is followed by much hysterics and saying you don't love me, you don't want me here because you hate me. Then the heart to heart that will last until the next battle. I am sorry I had forgotten the senior year of high school, and with my oldest it was a tough one, even who never did anything sneaky, she told me once that her and her friends are learning how not to act when they get into high school. Anyway she even got a case of it. So hang in there Ginny this year shall pass too.

I think they act the way to do because they are scared, because they know that after this year their lives are going to change, friends go off to college and they are going off too. I realized this after watching all the tears going on after both and 's graduation.

Katelin is sitting here beside me"coloring", I suppose you could call it modern art LOL.

take care,

Lin

[Guest guest]

Lin,

Marie and I have that kind of relationship now...the calm between the storms almost. A huge fight then The whole you hate me...you wanna ruin my life...I am an adult and you can't control me anymore..then a nice talk once she has calmed down...good for a day or so maybe and then the same fight over again. I have told her to use the door alot in the last few months...I never thought I would actually feel like I would want to have my daughter leave home...but I find myself wishing she would go on her own...which then I feel tremendously guilty about. But with all the fighting and the stress it brings on me..it just causes alot of flare ups and pain. i keep telling her this is the time to enjoy yourself not a time for all this anger and wanting to fight with me over every little thing. I pick my battles and have since she was probably 12 or 13. We didn't ever fight like we have been lately. I know she is angry about me having

RSD...and won't talk about it. She blames me for gettiing RSD and not being able to do alot of things I used to do be able to do. She also was used to me making a very good living so being on SSDI cramps her lifestyle. She wants everything to be back to when I was healthy and could work and blames me for not being able to. It's become so stressful that I am now hoping she goes away to college instead of the local college so she can actually live away next year. I have also tried to get her into couseling...but she refuses...I just know holding in all her feelings and becoming angry instead is just going to make her life miserable...and it seems she just wants to be miserable. Oh well enough of me venting about my daughter...hope you had a better day...Hugs..Ginny wrote:

Ginny,

She is a senior, and there is this disease that overcomes the most laid back kid and turns them into a spoiled rotten child. This disease is called Senioritis, and it is only going to get worse as the school year continues. I heard that line so many times that I finally told her there's the door if you are such an adult then go be on, of course this is followed by much hysterics and saying you don't love me, you don't want me here because you hate me. Then the heart to heart that will last until the next battle. I am sorry I had forgotten the senior year of high school, and with my oldest it was a tough one, even who never did anything sneaky, she told me once that her and her friends are learning how not to act when they get into high school. Anyway she even got a case of it. So hang in there Ginny this year shall pass too.

I think they act the way to do because they are scared, because they know that after this year their lives are going to change, friends go off to college and they are going off too. I realized this after watching all the tears going on after both and 's graduation.

Katelin is sitting here beside me"coloring", I suppose you could call it modern art LOL.

take care,

Lin

[Guest guest]

Ginny,

Wow you have had quite a battle for your health for a long time, How has she been up until now about your disability. I am assuming that you have had RSD since Dec 2003. With all that you have I can't believe that SSDI just approved you in April, I am just starting my whole battle with SS, I have been denied 1 time already, so on we go.

Take care, my thoughts and prayers are with you,

Lin

Marie is the senior..thankfully I only have 1 teenager right now...my son is 9 yrs old. I have had RSD since dec of 2004...but didn't get dx til july. But I have been "disabled" for almost 3 yrs now and finally got my ssdi approved in april of this yr. I have 3 types of arthritis, elhers-danlos syndrome which is a conective tissue disorder, Fibromyalgia, raynard's syndrome, sjogren, syndrome, degenative disc disorder and a hernaited disc in my lower back.

[Guest guest]

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 wrote:

Ginny,

Wow you have had quite a battle for your health for a long time, How has she been up until now about your disability. I am assuming that you have had RSD since Dec 2003. With all that you have I can't believe that SSDI just approved you in April, I am just starting my whole battle with SS, I have been denied 1 time already, so on we go.

Take care, my thoughts and prayers are with you,

Lin

Marie is the senior..thankfully I only have 1 teenager right now...my son is 9 yrs old. I have had RSD since dec of 2004...but didn't get dx til july. But I have been "disabled" for almost 3 yrs now and finally got my ssdi approved in april of this yr. I have 3 types of arthritis, elhers-danlos syndrome which is a conective tissue disorder, Fibromyalgia, raynard's syndrome, sjogren, syndrome, degenative disc disorder and a hernaited disc in my lower back.

[Guest guest]

Tonia,

Did you see Cathy's e-mail this morning..wondering if I am having a different type of migraine that is doing this to my eyes...am wondering the same about what you are describing with the pain. I know i don't have Optic neuritis...just optic nerve damage. there is so many diseases and eye disorders out there could be anything...I guess. I am glad that your Bells Palsey went into remission..must have been a very scary thing for you to go through at age 15. I think getting anything during your teen years is so much harder then being an adult...Teen years are hard enough without medical problems to deal with. I liked your idea about writing stories...I am imaginative and can write some if we get enough people and do it once a week if it will give us enough time to come up with another good story when it's our turn again. Hope your pain level is down and try to keep your stress down too..I know it's difficult with kids..believe me I have 2 and

believe it or not my 9 yr old is not as stressful as my 18 yr old...Hugs..Ginny Tonia wrote:

[Guest guest]

Maybe we can make a difference! Does anyone know of a Doctor who has RSD???

Lyn,

My Doctor, who is located in NJ, has RSD. He began treatment immediately and aggressively and it has not spread from the site of his original injury (thumb).

I can give you his info if you'd like to have it, just email me!

Hugs,

JO

[Guest guest]

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

Pamela Fredette <patches13033@y...> wrote:

> 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 PAM

>

> lynlorraine <lynlorraine@y...> 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!

> Lyn

>

> Ginny 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.

>

>

>

>

>

>

>yahoo.com

[Guest guest]

Hi Laurie, I was thinking along that line, too. There must be

famous/celeb people and doctors that have developed RSD.

ON this site in " files " under " Research Information " there is " A

research based model " written by Vic that I have printed and

read 3 times now. It is my new hope. I sent him two emails and I

don't have a reply. I want very badly to obtain the 2nd and 3rd

parts and the back up info he says he will supply. I wonder if

anyone else has read this and had the same reaction I did. I'd

like to have this guy in my corner. He may be interested in what we

are trying to do. How can we find this guy? Lyn

Roepkelaurie@a... wrote:

> Lyn, Ginny,

> Count me in. with the questions. I wish there was a study out

there we could

> all be in. Seems like we all have alot of symptoms that are the

same. But I

> think it ccomes down to money and popularity of disease. Don't

know any famous

> people that have it. Wouldn't wish this on to anybody but someone

with money

> wouldn't hurt. Shame on me.

> Laurie

[Guest guest]

Lyn and Pam - I believe I recall reading at one point that Dr. Schwartzman in Philadelphia who is an "RSD specialist" as has great word of mouth as to his bedside manner and treatment of his patients, was diagnosed with RSD himself at one point. Of course, I'm losing my mind or am perhaps retrieving faulty memories, so you may wanna check that out Tricialynlorraine wrote:

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, LynPamela Fredette <patches13033@y...> wrote:> 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 PAM> > lynlorraine <lynlorraine@y...> 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!> Lyn> > Ginny 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. > > > > > > >yahoo.com

[Guest guest]

Tricia, Thanks for the tip. I'll make note. Lyn

Tricia Skiba <eeyore3975@y...> wrote:

> Lyn and Pam - I believe I recall reading at one point that Dr.

Schwartzman in Philadelphia who is an " RSD specialist " as has great

word of mouth as to his bedside manner and treatment of his

patients, was diagnosed with RSD himself at one point. Of course,

I'm losing my mind or am perhaps retrieving faulty memories, so you

may wanna check that out Tricia

>

> lynlorraine <lynlorraine@y...> wrote:

> Hi Pam, Maybe we can make a difference! Does anyone know of a

> Doctor who has RSD???

>

[Guest guest]

Thank you Tonia, I think JO is going to give me the info for the Dr

with thumb. Did Schwartzmann help you?

Lyn

" Tonia " <iowahillbilly@h...> wrote:

> 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

[Guest guest]

Ginny - I guess maybe being a spelling or typing teacher isn't on the horizon for you. By the way, Hershey's miniatures go a long way at remedying a lot of things. Just be certain to check your pockets before you do your laundry. BarbaraGinny Barrientos wrote:

To everyone,

Tricia is not an evil person....I think barb clarified her letter...and I must be queen of not reading posts right because I never caught the error til she corrected it..lol So backing up tricia here...lol. Now me being a little evil?...lol...seems like my horns have been showing a little more then usual...lol. And if Lyn draws a pic of me my horns will be showing all the time..lol. Thanks everyone for the good lucks..I am sure things will be resolved with the eye thing in time. I figure a positive attitude and hershey's miniatures in my pocket will make everything go smooth tomorrow..Hoping you all better days..Hugs..Ginny

[Guest guest]

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 wrote:

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

[Guest guest]

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

Ginny,

That is so true about misreading things when pain level is high. I am glad I caught it too, luckily I was filling my pill minder box, that was when it clicked in. That would have been a total bummer.

Have a good evening.

Lin

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[Guest guest]

Ginny,

Thanks for the info. I to suffer from the cold stuff to. I knew it was all RSD related just need assurance that's what's going on. I felt alone in this area. Thanks and have a good Friday.

Laurie

[Guest guest]

Ginny,

Thanks for the info. I to suffer from the cold stuff to. I knew it was all RSD related just need assurance that's what's going on. I felt alone in this area. Thanks and have a good Friday.

Laurie

[Guest guest]

Laurie,

I do not get cold, but do I ever have problems with the sweating! Sometimes it gets so severe after having a block done that I want to scream! ABSOLUTELY forget wearing sweaters anymore! If I put one on, my body goes into overdrive and my glasses get steamed up and I litterally start to get sick from the heat! I know that this is a problem not only with the RSD, but also with the MS that I have, because my Mom's very good friend has her heat on 50 when you go to her house in the winter, and Mom did not realize why until she found out about what the heat does to me with the MS! I get sick and have to sit down for a while after taking a shower that is to warm!

I never use to be like this, and always was cold. Well no longer, I sometimes wear shorts and a tshirt if I know I am going to be in the house and do not have to go anywhere! I will probally end up giving away my sweaters, because I will never wear them again and they are so nice! I tried wearing a lighter one out yesterday and had to change, because I could not stop sweating! The doctors told me there is nothing that they can do, and it is just a side effect that some of us will get! Just Wonderful!!!

Well I know that I did not answer any questions, but hopefully you know that you are not alone where this is concerned! It is funny though, when you consider that while I was out with Mom yesterday I bought a couple of tshirts and also ordered some on the web the other day! Just try and stay cool without getting sick! You must dress warm when you are outside or you are going to end up like me with the bronchitis! Take Care and LOL to you and your family!!!

Dawn

Roepkelaurie@... wrote:

Ginny,

Thanks for the info. I to suffer from the cold stuff to. I knew it was all RSD related just need assurance that's what's going on. I felt alone in this area. Thanks and have a good Friday.

Laurie

[Guest guest]

Laurie,

I do not get cold, but do I ever have problems with the sweating! Sometimes it gets so severe after having a block done that I want to scream! ABSOLUTELY forget wearing sweaters anymore! If I put one on, my body goes into overdrive and my glasses get steamed up and I litterally start to get sick from the heat! I know that this is a problem not only with the RSD, but also with the MS that I have, because my Mom's very good friend has her heat on 50 when you go to her house in the winter, and Mom did not realize why until she found out about what the heat does to me with the MS! I get sick and have to sit down for a while after taking a shower that is to warm!

I never use to be like this, and always was cold. Well no longer, I sometimes wear shorts and a tshirt if I know I am going to be in the house and do not have to go anywhere! I will probally end up giving away my sweaters, because I will never wear them again and they are so nice! I tried wearing a lighter one out yesterday and had to change, because I could not stop sweating! The doctors told me there is nothing that they can do, and it is just a side effect that some of us will get! Just Wonderful!!!

Well I know that I did not answer any questions, but hopefully you know that you are not alone where this is concerned! It is funny though, when you consider that while I was out with Mom yesterday I bought a couple of tshirts and also ordered some on the web the other day! Just try and stay cool without getting sick! You must dress warm when you are outside or you are going to end up like me with the bronchitis! Take Care and LOL to you and your family!!!

Dawn

Roepkelaurie@... wrote:

Ginny,

Thanks for the info. I to suffer from the cold stuff to. I knew it was all RSD related just need assurance that's what's going on. I felt alone in this area. Thanks and have a good Friday.

Laurie