[andrea puskas]

Hello friends, I just found this site and am very grateful to see you all here.
I live now in Daytona Fl. and am a single 60 years old feamle with RSD for 21 years now.

I got RSD in the dark days when there was no one to talk to and all the doctors told you that you were just crazy.

My RSD started from an ankle sprain in 1991. I had the added pleasure of fighting a 16 year Pa. workers comp suit and 7 years for SSD.
You had to do your own homework then too. No one but God had ever heard of RSD and He wasn't happy about it either. No one should have to live thru that kind of condemnation and degradation and torture phsically or mentally.
It was a nightmare. 16 years of workers comp doctors and hearings and lawyers and judges, it was nasty. Not to mention being single and poor.
I lost everything I had ever worked for. My business, cars, house, savings, and next was my pride...they almost beat me down.


Took me 4 years to find a doctor that even heard of RSD. By the time I got to the 58th doctor, Doc Marty, confirming my Pysical Therapist's suspisions, Doc Marty helped me start a new life of this horror. I began going into the hospital for 5 days at a stretch for treatments. I had a 24/5 continuous Lydicaine drip in the spine, epidoral block. Some call it a sympathetic block.
However, after 2 years and 6 blocks and tooooo many drugs, I had no releif from the pain.

The first block did however, take away the huge edema in the right leg. It has never come back. I treated with Dr. Hoosmand in 1997 and he deemed me Systemic RSD. I kinda knew that before I saw him though. I knew it was taking over my left hand and arm by then. We all know our own body and can tell when things are wacked out.

However, it was Hoosmand's name on the dotted line that won my SSD case. He was honest and told me how bad things really had gotten. I had to pay for his care out of my own pocket but it was worth it in the end.
It isn't always what you know but how to handle who you know...
sometimes that might unlock the doors that are crippeling you.
RSDHope helped me to get off of my rear and start living in this RSD world.
They opened the door for me to meet other RSD people, a true blessing.

REMEMBER, you are not only fighting the pain you have to learn and fight The System. It was not a pleasent time, and my friends and family did not know how to deal with the peson that now lived in Andrea's body.
They suffered with denial as much as I did during those times.

I lived in Mars, Pa. at this time and truely thought that martians were taking me in the night and doing these things to me. It was a circus.
Only an RSD person can appriceate the Martian therory......I was really starting to question myself.
However, time has gone by and I've accepted the facts of learning that there is no fix -just treatment and always miracles.

I am a faithfilled person and never stopped praying most importantly.

I owned my own business at the time of my injury and worked Heavy Highway as a truck driver and heavy equipment operator for Pa. Steelworkers building bridges and highways.
I also owned a hair salon and had 5 employees at Love Your Hair. I have been a hairstylist since 1969, owning and operating numerous salons.
I like the open air and am a Chevy Gear Head so got my CDL and started truckin for a living as the salon held its own. I have only been married 4 years of my 60 and have , thru God's grace, been an independent woman,
even now.

I can tell you horror stories all day long, but it only creates more anger sometimes. So as a vetern of RSD I will encourage you to learn about RSD and include your family in that knowledge so they do not suffer too.
Keep faith and know you can live thru this nightmare. Keep your sence of humor and cry when you need to, it helps. You have to find what is left of you and your passions, and continue to Live. It ain't easy but, you can.

I have started support groups from Mars, Pa. to Daytona Fl. to North Pole Alaska spreading the word of RSD. In fact next Sept. I am planning a 10 year reunion with the North Pole folks. I am truckin' there for RSD. Going to fish for salmon in Valdez before it is too late for me. You have to keep living.

I will leave you with this thought tonight: It could be worse.

You could be the boat captain that had to take me parasailing last week. Poor guy, he didn't know what to do with this chunkey crippled old lady with 2 canes trying to walk the plank to get to the boat.
I could see the terror in his face. I explained my limits to him, told him my darkest secret..how much I weighed...and we set a plan. He landed me back on board on my butt like he had done it a hundred times. It was a Blast and the captain is to be commnded. Will post pics soon.

YOU have to keep on living... search thru the doctors, the lawyers and money problems and know there is light at the end of the tunnel if you work at being who you have become and use who you were. I heard Cher say during an interview I saw one time, "If a cock roach can adapt so can I..
I am smarter than a cock roach." I have heald on to that all these years.

There is always an ear and a shoulder for anyone who needs it. Please don't let anger and the System beat you down.
Any mediacal, legal, spiritual, emotional questions, please just ask...
I found my best avenues of treatment thru Alternitive care. Keneisiology, Reflexology, Yoga, suppliments, exersize, and prayers. Keep on truckin".
Thank you all for your efforts and being here.

Sending Peace & LUV to all. Andrea
RSD from Mars with LUV. Lending Unity for Victory.

[Darlene]

Andrea,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

So sorry to hear what you are going through. See you have found your way to the RSD. Looks like you have been tolerating since you got a doctor to listen.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[andrea puskas]

Good morning folks, what a great job you did with my thoughts. Thank you for a very warm and fruitful welcome.
Your work is a God send to all who are here. Thank you for your eforts and time.
Still learning my way around, but it is well laid out.
Have an easy day, talk soon again. Peace & LUV, Andrea.

[alt1268]

Andrea,

Welcome to the forum. It is great to have you in the rsd group with me. I am sure you will meet lots of new friends and with as many years that you have had rsd will be able to share a lot more of your experiences and frustrations with us.

I am glad to have you here and glad to be friends.

[andrea puskas]

Originally Posted by alt1268

Andrea,

Welcome to the forum. It is great to have you in the rsd group with me. I am sure you will meet lots of new friends and with as many years that you have had rsd will be able to share a lot more of your experiences and frustrations with us.

I am glad to have you here and glad to be friends.

Right back at ya. I have been so poor the last few years I did not have a computer. So, have some catching up to do.
So grateful to see so many folks active here. Just sorry it has to be for these issues. Wonderfully constructed site, warm folks, and lottsa info.
Praise God for His blessings.
Have an easy day n talk again. Peac & LUV, Andrea

[Leesa]

Andrea ~

You are TRULY an inspiration to everyone here! What you have endured should make all of us sit up and take notice! If you can go thru all that, I'm sure we can go thru out troubles & woes too!

I've been a chronic painer too for 26 years, and while I've had to deal with doctors thinking it was all in my head for years, it finally came to fruition that I had some herniated discs and nerve problems! After 2 open surgeries and a spinal cord stimulator implant and removal, I'm now left disabled since nothing went well. Next, patients like me have to deal with doctors who are scared to give medications to ease the pain cause they're either afraid of the DEA or they're afraid we'll get addicted!! As I'm sure you know, rarely any chronic pain patients get addicted to their meds, but still these docs don't adequately prescribe. So we are still left in chronic pain. And "paiin management doctors" don't like us after we've had everything done in their clinic -- they won't manage our drugs because they just "don't like to do that."

I've gotten a little cynical due to dealing with doctors. But my "newer" doctor isn't too bad, so things are looking up. I can't whine too much because of what I've just read that YOU went thru! So I think I'll shut up, and put my tail between my legs and become more humble!

Again, Andrea -- You will be a HUGE asset to this forum and I'm so glad you're here. God bless you and thank you for sharing! Hugs, Lee

[andrea puskas]

Originally Posted by Leesa

Andrea ~

You are TRULY an inspiration to everyone here! What you have endured should make all of us sit up and take notice! If you can go thru all that, I'm sure we can go thru out troubles & woes too!

I've been a chronic painer too for 26 years, and while I've had to deal with doctors thinking it was all in my head for years, it finally came to fruition that I had some herniated discs and nerve problems! After 2 open surgeries and a spinal cord stimulator implant and removal, I'm now left disabled since nothing went well. Next, patients like me have to deal with doctors who are scared to give medications to ease the pain cause they're either afraid of the DEA or they're afraid we'll get addicted!! As I'm sure you know, rarely any chronic pain patients get addicted to their meds, but still these docs don't adequately prescribe. So we are still left in chronic pain. And "paiin management doctors" don't like us after we've had everything done in their clinic -- they won't manage our drugs because they just "don't like to do that."

I've gotten a little cynical due to dealing with doctors. But my "newer" doctor isn't too bad, so things are looking up. I can't whine too much because of what I've just read that YOU went thru! So I think I'll shut up, and put my tail between my legs and become more humble!

Again, Andrea -- You will be a HUGE asset to this forum and I'm so glad you're here. God bless you and thank you for sharing! Hugs, Lee

HI Lee, hope this finds you having an easy night.
And thanks for the reply and sharing your plight. It helps to hear others...
My workers Comp mentor was a man with 32 years of back problems and comp issues. I lived it with him before I was hit with RSD. I thank God for him as my road was made a little smoother by way of his mistakes.
God bless you and keep you strong.

I am just so used to this life style I guess, I really try and make the good days count and plan for fun times ahead, It is a gift to be able to live in your imagination and have faith enough to make your dreams happen.

If the truth be known I just came out of one of the worst depression I have had in a longggg time. My hands and shoulders have been changing so much this past year, it was a tough one I'll tell ya. Ended up almost homeless too this year. It has been exciting.
Almost a year of looking for the highest bridge. The dawgone deprssion of RSD is as bad as the pain. And living alone makes life a bit weird at times.

I try to be a fun person, but I get so board with myself during the down RSD times..I ain't no fun for no one!
spending days on end at doctors and on the sofa just to get a little peace in between...you know the deal.

Your life sounds very simaliar, past & present. Different names and places but the bottom line is the same. How gimpped up are you if I may ask?

I use 2 canes if I go out without a chair or electric scooter. Have no dosaflextion in the right leg and the thing just hangs around tripping me up too often. My poor old clutch leg is worn out from taking all the wieght and activity all these years. Knees, hips, all catty-wampis....My left arm n hand are doing the claw thing too much lately and my upper body has the most pain now adays. I have had many many folks ask me if I had a stroke...you know the look, I am sure.
Then the stupidity starts. "Oh you poor thing-what happened to you?"
I sparianed my ankle in 1991 and this is me now...call it RSD.

Keep telling myself that I am practising being old---when I get there I will be all practised up!

The pain clinics and the drugs are all a mess, just more often than not a waste of time and money. I have my little mix of RSD cookies (as I call them)
see my regular Pcp every 3 months and treat each day with alternative herbs and remodies and swim. That is my salvation.
I can't walk worth a darn but I can swim like a fish and do everyday. Or try anyway. We need the exersize even as a healthy body does.
The PT days which were many years and tears--were friutless. The pool is my saving grace these days. I am blessed to have one in the complex where I live.

I swim at night as the sun and I are enimies. Ya know for years---I thought that the notice on the bottles meant to keep the bottles out of the sun...Dahhh, means me-- I learned the hard way.

Big old full blue moon and a mid-night swim. Don't get no better. I think I shall say goodnite and head up the pool.
I have a souped -up 4 wheeled 4 wheel drive haunkin electric scooter, and I can still play in the woods if I want to. It goes almost anywhere.
So off for a ride in Tarzan land and a swim. I live in a big woods in Fl.
Very nice and inspirational.

Part of my healing is my love for the outdoors. You have to keep your passions going and make new ones if ya can.
In 21 years I have only missed 2 season of Pa deer hunting. I have been a hunter since I was 12. My Dad opened the doors for me. Love the woods.
Live to hunt and fish. Just being out there is the gift. I have been poor for so long I need to hunt or fish to eat protein.
Beans for protein source only goes for so long...I am just so grateful to God for all he has aloud me to do--gimpped up or abled bodied.

And you know keeping an UP attitude is a healing gift in itself. You have been down the street too many times too. I hear in your note.

And by the way-"cynical" is a very calm, nice, lady-like-way to discribe my attitude toward most medical folks and treatments. !!!!!
I won't even go there tonight. LOL LOL

So much of my ugliness with developing RSD was the fact that it was under a workers comp. umbrella. I sure learned a Whole bunch of stuff I didn't need to know about our System. It will all be in the book someday.! That is if I could ever make myself focus long enogh really get my head on straight.
Fighting for SSD was a walk in the park by compairision.
The games you have to endure are like nothing you could dream as a God fearing person, even on a bad day. We will talk soon again .

Hang in there and looking forward to getting to know ya better.
Good nite now n God bless us all.
Peace & LUV, Andrea
RSD from MARS with LUV. Lending Unity for Victory.

[(Broken Wings)]

Welcome

I do admire your spunk.

I keep on chuggin' for me and my little family.

It's not easy, is it?

I can only live my life, and share because I care about people.

I feel so misunderstood at times, because I do push beyond limits with so many challenges, really, that, at times, I wonder if I'm right to put myself though so much.

I have found much help in alternative methods of treatment. I also need my great doctors, the few I found that is. But once you find the right one, things get easier.

It comes down to God's grace to be able to do as good as I do, although I'm so unworthy.

It's great to get to know you.

You're going to love NT....






QUOTE=andrea puskas;910087]Hello friends, I just found this site and am very grateful to see you all here.
I live now in Daytona Fl. and am a single 60 years old feamle with RSD for 21 years now.

I got RSD in the dark days when there was no one to talk to and all the doctors told you that you were just crazy.

My RSD started from an ankle sprain in 1991. I had the added pleasure of fighting a 16 year Pa. workers comp suit and 7 years for SSD.
You had to do your own homework then too. No one but God had ever heard of RSD and He wasn't happy about it either. No one should have to live thru that kind of condemnation and degradation and torture phsically or mentally.
It was a nightmare. 16 years of workers comp doctors and hearings and lawyers and judges, it was nasty. Not to mention being single and poor.
I lost everything I had ever worked for. My business, cars, house, savings, and next was my pride...they almost beat me down.


Took me 4 years to find a doctor that even heard of RSD. By the time I got to the 58th doctor, Doc Marty, confirming my Pysical Therapist's suspisions, Doc Marty helped me start a new life of this horror. I began going into the hospital for 5 days at a stretch for treatments. I had a 24/5 continuous Lydicaine drip in the spine, epidoral block. Some call it a sympathetic block.
However, after 2 years and 6 blocks and tooooo many drugs, I had no releif from the pain.

The first block did however, take away the huge edema in the right leg. It has never come back. I treated with Dr. Hoosmand in 1997 and he deemed me Systemic RSD. I kinda knew that before I saw him though. I knew it was taking over my left hand and arm by then. We all know our own body and can tell when things are wacked out.

However, it was Hoosmand's name on the dotted line that won my SSD case. He was honest and told me how bad things really had gotten. I had to pay for his care out of my own pocket but it was worth it in the end.
It isn't always what you know but how to handle who you know...
sometimes that might unlock the doors that are crippeling you.
RSDHope helped me to get off of my rear and start living in this RSD world.
They opened the door for me to meet other RSD people, a true blessing.

REMEMBER, you are not only fighting the pain you have to learn and fight The System. It was not a pleasent time, and my friends and family did not know how to deal with the peson that now lived in Andrea's body.
They suffered with denial as much as I did during those times.

I lived in Mars, Pa. at this time and truely thought that martians were taking me in the night and doing these things to me. It was a circus.
Only an RSD person can appriceate the Martian therory......I was really starting to question myself.
However, time has gone by and I've accepted the facts of learning that there is no fix -just treatment and always miracles.

I am a faithfilled person and never stopped praying most importantly.

I owned my own business at the time of my injury and worked Heavy Highway as a truck driver and heavy equipment operator for Pa. Steelworkers building bridges and highways.
I also owned a hair salon and had 5 employees at Love Your Hair. I have been a hairstylist since 1969, owning and operating numerous salons.
I like the open air and am a Chevy Gear Head so got my CDL and started truckin for a living as the salon held its own. I have only been married 4 years of my 60 and have , thru God's grace, been an independent woman,
even now.

I can tell you horror stories all day long, but it only creates more anger sometimes. So as a vetern of RSD I will encourage you to learn about RSD and include your family in that knowledge so they do not suffer too.
Keep faith and know you can live thru this nightmare. Keep your sence of humor and cry when you need to, it helps. You have to find what is left of you and your passions, and continue to Live. It ain't easy but, you can.

I have started support groups from Mars, Pa. to Daytona Fl. to North Pole Alaska spreading the word of RSD. In fact next Sept. I am planning a 10 year reunion with the North Pole folks. I am truckin' there for RSD. Going to fish for salmon in Valdez before it is too late for me. You have to keep living.

I will leave you with this thought tonight: It could be worse.

You could be the boat captain that had to take me parasailing last week. Poor guy, he didn't know what to do with this chunkey crippled old lady with 2 canes trying to walk the plank to get to the boat.
I could see the terror in his face. I explained my limits to him, told him my darkest secret..how much I weighed...and we set a plan. He landed me back on board on my butt like he had done it a hundred times. It was a Blast and the captain is to be commnded. Will post pics soon.

YOU have to keep on living... search thru the doctors, the lawyers and money problems and know there is light at the end of the tunnel if you work at being who you have become and use who you were. I heard Cher say during an interview I saw one time, "If a cock roach can adapt so can I..
I am smarter than a cock roach." I have heald on to that all these years.

There is always an ear and a shoulder for anyone who needs it. Please don't let anger and the System beat you down.
Any mediacal, legal, spiritual, emotional questions, please just ask...
I found my best avenues of treatment thru Alternitive care. Keneisiology, Reflexology, Yoga, suppliments, exersize, and prayers. Keep on truckin".
Thank you all for your efforts and being here.

Sending Peace & LUV to all. Andrea
RSD from Mars with LUV. Lending Unity for Victory.[/QUOTE]

[ElsieGrant]

I can hardly imagine having RSD for 21 years like you have...it's been 9 for me. I am only 22 and it already feels like my life is over before it even started. It is very difficult for me to walk and I use a cane, most days I feel like I am at least three times older and various other health problems have added themselves to the list. So many of your treatments I can relate to since I have had them too. Mostly just wanted to say hello since I am new here.

[andrea puskas]

Originally Posted by ElsieGrant

I can hardly imagine having RSD for 21 years like you have...it's been 9 for me. I am only 22 and it already feels like my life is over before it even started. It is very difficult for me to walk and I use a cane, most days I feel like I am at least three times older and various other health problems have added themselves to the list. So many of your treatments I can relate to since I have had them too. Mostly just wanted to say hello since I am new here.

Hello Dear young Elsie,
I am just speachless right now seeing a 22 yr.old having to live this life.
Hurts my heart. And your family..God bless them for love and caring.
This is a family problem as I am sure you know. It is hard for them and they do feel pain for you just a different kind.

I know it doesn't help with the pain but...you have a life line here as opposed to the Dark Ages when NO ONE heard of this horror. Use this to learn, to help yourself stay on top of things, and for healing. Laugh, cry, cuss, but truth is...Yeah, you are practising being OLD. Gotta laugh at it or ya just will cry.

I am new here and so grateful to see eyes being opened and hearts being healed by way of support. It took almost 8 years for me to find anyone who had this JUNK. RSDHope was my first life-line and bless them for their efforts.

I had to move to Fl in mid 90's as I was looseing my home and ability to care for myself and my home. I needed my Mommy.
This is when I learned how to use a computer. Found RSDHope and began going to medical seminar for RSD.
Hoosmand and Schwartz were the top men at the time (still are in my book)
and what a wealth of knowledge I recieved.
That was when my legal ssues really got heavy and I had done my homework so had that info in hand to fight back with the FDA, SS, W/C lawyers and try to help my family understand that Andrea still lives in this body, she is just different.
Swimming and alternative care got me back on my feet and help form Mom and friends pushed me to be more active in the RSD world and my own world. I realized I have to keep my passions going. And what a better place than Sunny Fl. the land of fishing and NASCAR racing.
Doing the race track in a wheel chair was not my dream but got to live it and rose above this disability. I got to ride in Dale Ernharts car doing 3 laps around Daytona track at 150 mph +.....dream come true!.
And caught a Blue Marlin to hang on the wll. What a day at sea that was.

See, this is what hurts my heart. I have lived.
I am old in comparision to you Dear one. I have done things in life people only dream about. I've had a full life before this happened and during.
I just don't know what to tell you.
I can only assure you that I have tears steaming down right now for you, and you are in my prayers.

Please get back to me and share a little of what your life is doing OK?
I will tell you that above all the meds and treatments, use your sence of humor as much as you can. Laugh and dream of the time when your miracle will unfold for you. The endorphines of laughter are so healing. I have a picture of them and use them every chance I get.

That is probably why my closest friends call me Crazy Lady. You become crazy trying to live with this. I have worked at turning it around and making a joke of it and the System with their Quote-Treatments. The frustration of the system is part of the mess and just too great to put alot of time into.

They try to sell us FIX, and too often maintainance is all there is.....
Gotta get moveing and get to church. Give thanks where thanks is due.

Keep faith in as much as this is just temporary. Everything for a reason.
You will be ok and live thru this. God has a plan for you young one.
Beleive these things and trust that time will change and you will move forward in a wonderful direction that you have not even imagined.

By the time ya get to my age you will be Queen of the Bingo. You will be pracised up with your canes and you can out run all the gabby old ladies. lol.
RSD does not kill our Humor sensors; only we can do that.
Much love to you today and very blessed to know you.
Keep truckin Girl, you will get there. Talk again soon.

Peace & LUV, Andrea RSD from MARS with LUV.
Lending Unity for Victory