It's Early, Quality of Life Plea for 2005

For everything and anything else not covered in the other RLS/WED sections.
becat
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It's Early, Quality of Life Plea for 2005

Postby becat » Tue Dec 14, 2004 6:05 am

This was started in 2005 - feel free to go to the end of this and add to it. Or just read through them.

Hello to everyone,......

I would like to take this time to put out my plea for 2005, for Quality of Life statements.
Why now? So early? I know the meeting is in Nov. 2005, in Orlando, Fl.. But this year I'd like to have some updates and some new statements. This takes time, No last minute rushes. ALthough, this year's was great for a starter.

Well, it occured to me that some of you will have some time off and may have a chance to think about living with RLS. Some of you have written one already, guess what, your not excluded here.
For those of you that have not heard about this.......
What is a Quality of Life statement?

If you had five minutes to talk to someone that was working on RLS. The doctors, the researchers, the RLS Foundation and it's membership.....
WHAT WOULD YOU SAY TO THEM ABOUT YOUR QUALITY OF LIFE?


It's not an easy thing to do. Rehashing over the struggles RLS has made for you, your families, your friends. Believe it or not I've been told and know, that it turns out to be a hard thing to describe. To ball up into one statement. You may not connect all the dots of your struggles until you start to pick them apart. You may have an awesome story of hope or success. They are not all gloom and doom. It is simple your five minutes to voice your opinions to someone that may be able to make a difference.
You are helping to put a face to RLS. That is an important thing to do. The researchers, the doctors that treat us need to get past the chart, the test results. They need to see the faces. Start to put real lives behind the humans they treat. This is a way to put our hearts into their work.

For those of you that have written a statement for the meeting in Long Beach.......bless you, your voices were heard and you made a real difference. However, I would like to have updates. I recently spoke to one of our members about the fact that my first statement was angry and how it has changed. I would venture to say that with successful treatment some of you would change your Q of L then as well. You may give it some thought and maybe somewhere throughout the year update me........as many times as you like to.
I can't tell you all how much this simple little project changed the way I felt. I know that most of my strength came from the caring, loving, wonderful people on this board. I made myself understand that WE must be our own Gatekeepers.
I will promise the same as I did last year. With your trust I will make sure that the people at the National RLS Foundation's meeting in Orlando, FL., will know about you. Hear you. I can only deliver them, smile, and shake hands......but they will have your words. Your hearts. Your stories. They need to have us there and they need to take us home with them. When they go to work, let them know us.
******
This can be emailed to me here
or at
rlsbecat@yahoo.com**************
The only other thing I can think that makes this better is if you want to email me a picture that I would be allowed to use with your statement.
Thanks in advance......................
Last edited by becat on Sat Jan 15, 2005 4:34 am, edited 1 time in total.

Sara
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Postby Sara » Tue Dec 14, 2004 1:49 pm

Becat. honey--

You know that I for one would walk over hot coals for you.... wait, I think I do that every night, and you never asked me to?!! :lol:

But seriously, I will start re-thinking mine, and working on an update. The first one was quite an experience to write, as anyone out there who wrote one knows. But I know mine will have evolved, too, when the second one's done. Finding our 12 year old with RLS symptoms, having some success and some failure at controlling my own, learning more about this condition and my fellows who have it.... all these things certainly have an effect on my mindset about the whole issue.

And a photo, hey, no problem... and what a good idea. You said all along you wanted these people to know the "faces" of RLS. Let's make it literal as well as figurative. You can have my "real me" Colorado photo. :D Just remind me and I'll send it.

And FOLKS.... PLEASE consider answering Becat's plea about this!!!! I think you'll find that it's a beneficial thing to you as well as to all of us.

Hugs-- Sara :D

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jan3213
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New QUALITY OF LIFE STATEMENTS--Please help!!!

Postby jan3213 » Tue Dec 14, 2004 3:45 pm

Becat, it's Jan

I'll get a new one to you ASAP!!! A picture is a great idea--just wish I looked better!!! Ha!! Seriously, a lot has happened to me, too, since I wrote my last one. And I know how important they were in Long Beach!

I'd do anything for you, too!!! You're just a pretty special person!!!!

Like Sara said, EVERYONE PLEASE DO THIS FOR YOU----FOR BECAT--FOR ALL OF US!!! It's not that hard to write and it is SO IMPORTANT!!!! We WILL make a change in RLS research, just wait and see!!!!!!!!

Love ya Becat!!

Jan
No one is alone who had friends.

becat
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Postby becat » Sat Jan 15, 2005 4:35 am

Bump for the newbies..........................

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sardsy75
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Request for Help

Postby sardsy75 » Mon Jan 17, 2005 10:37 am

Guys (and gals) I need your help!

I received an email this morning from the RLS Australia Co-ordinator, Beverley Yakich.

The RLS Australia Patient Support Group is holding an even at our national Parliament House in Canberra on 14th February (short notice, I know!). The event is an art workshop/exhibition to raise awareness about RLS amongst the Australian Members of Parliament, including the Australian Prime Minister.

The date, Valentines Day 14th February, was deliberatly chosen as a reminder that this debilitating condition can not only be a "spoiler" for romance and intimacy but also an underlying cause of relationship breakdowns. The idea is for RLS participants to create a visual representation of how RLS impacts on their life i.e. we will try to "Paint the RLS Demon" - capturing our sleep deprivation and life disruption on canvas.

In doing this we hope to give our Members of Parliament an understanding that RLS is a genuine disorder that creates medical and daily living problems for many people. Our Aussie RLS Group want our politicians not only to be informed, but sympathetic of the difficulties it causes in our lives; particularly when it comes time for them to consider the application for PBS listing for effective RLS medications; making them more affordable for RLS patients

It is an opportunity for the Australian RLS patients to express our frustration about this syndrome; how it causes sleep deprivation and for many, robs us of energy and a decent quality of life.


THIS IS WHERE I NEED YOUR ASSISTANCE!!!

The Australian RLS Foundation is still a relatively small organisation, and as such, does not have the kind of "punch" that a group of this size has.


MY REQUEST:

I am asking all of those who took part in the "Quality of Life Statement" project for the November 2004 meeting, or who are doing one for this year to please consider sending me a copy of your statement so that I might be able to add to the wonderful work that Becat has already started by getting our stories "heard" by some of the most influential people in my country.


As was the case in November when Becat represented us at the meeting, your Statements will be marked strictly private and confidential and WILL NOT be copied or distributed enmasse. You have my word that your privacy will be protected to the best of my ability.

You guys (and gals) are my RLS Family ... and you know how much I love you all and appreciate the times when you have dragged me back from the bottom of the mountain with your words of encouragement and wisdom and good old cyber-hugs.

I know I have been absent from these boards for a unforgivably lengthy amount of time, but I will endeavour to explain the reasons in another post. To put it simply ... my bookkeeping business is flourishing :) ... my marriage is being held together by mere threads :cry: ... and my RLS is ... well ... it's doing it's usual thing and making my life as hellish as possible :roll:

OK, I'll quit there and will now cross all my fingers and toes and hope that some of you will come to my aid in the short amount of time that I have.

If you do wish to help, please contact me either through the private messages in here or send an email to nadiarussell_75@yahoo.com

Take care of you all
(((((HUGS)))))
Nadia
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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lyndarae
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Postby lyndarae » Mon Jan 17, 2005 3:37 pm

Dear Becat, I was just thinking about it and you are so right,my life has changed so much in the last 6 months since I found this forum and all of you. My statement came from my heart and was hard to write but it also just ended after I wrote it. I mean I think it might be cool for "them" to see the before and after if you will, my life before this forum and my life after. The fact that I could get no help or support from anyone until I came here how much I have learned and how much I have taught my doc. Just how important this forum is and how many lifes it has saved. Mine being one of them~~~~~~~~~~~~~~~~~~~~lyndarae

becat
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Quality of Life Statement Jan 2005

Postby becat » Thu Jan 20, 2005 6:25 pm

Quality of Life statement Jan 2005
For the Down Under Group
Becat/Tx/USA

It's hard to describe just how different my life is, living with RLS, from 5 months ago. It's a total transformation. A begining of a new me.
For the better part ,of my soon to be, 41 yrs. My body has fought me. I wanted to be like the others, sleeping peacefully, pain free. However, that was not my path. From the time I can remember being alive, "growing pains" have tortured me. By the age of 3 or 4 yrs. old I could fill a hot water bottle by myself. It became so often that I awoke as a child, I stopped waking my mother for help. I knew how it was going to get better. So I did it.

In my earliest part of my 30's I suffered an accident that left me with a broken ankle and leg. This was a defining moment for my RLS. What once had found me only at night, now was a daily torture to live around. From that moment on, Dec. 14, 1995, I've never lived a pain free life. I struggled for the better part of 8 yrs trying to get the issues addressed. After many years of constant pain, sleep deprivation, and misdiagnosis and treatment, I found a name for the very thing that had plagued me for a life time. Restless Leg Syndrome.

Although I was able to research this little know disorder. I was unable to find the right treatment. Little did I know that this would be a constant issue with RLS. Even if you find a doctor that has heard of it, treatment is little more than trial and error for most of us. The fact remains that treatments can be time limited, experimental, and costly. More than once I've taken things that were sure to help, only to cause the RLS to worsen or the side effects were far too hard to deal with. Having said this, I'd do it all over again if I thought it would have helped.

This disorder can destroy people's lives. It's effects our families, our friends, our jobs. Mostly it effects our hope that the future is our's to dream about. Holding back the hope we so badly need, that an effective is to be found, is simply wrong. When someone suffers a chronic illness or disorder, their Quality of Life is at issue. Quality of Life is a right, not something given. It's a right of all of us.

My life before good treatment was lacking hope, pain filled, sleep deprived, and sleepless. The list of health problems and emotional trama was not limited to just me. I surely put myself at risk by self medicating, seeking healing rest. It took almost three years of trial and error before I found something that worked for me. I am not pain free 100% for the time and don't expect to be. However, I can manage the level of RLS I still live with. I will live with. I'm not sure how long this positive treatment will work, but I'll cherish it while I have it. There is hope in my life once again.

As a final thought, to those that help define and create treatments for RLS. To those that live with this endless diorder. Until we have a cure for this disorder we should all be charged to the right for the proper treatment. It is a right to have a good Quality of Life, no one deserves less. No limits, no cost, no holding back. What works for one may not always work for another and no one has the right to deny hope.

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jan3213
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Quality of Life

Postby jan3213 » Sun Jan 23, 2005 7:33 am

It's Jan

Quality of life--I never thought of that before I joined this forum. I just assumed that what was wrong with me was my "lot in life". But, as everyone can see from Nadia, RLS can effect so much--more than physical--emotional health and relationships.

And, no one ever put it more eloquently, IMHO, than Becat. I can hear the pain in every word she writes. I can hear MY pain in every word she writes. I have learned so much from the people in this forum--from my very good friends Rubyslipper, Sara, Lyndarae, AND Becat--among others. Becat has such a way with words. I know I've said this ad nauseum, but Becat writes in such a way that you can SEE and FEEL what she has been through. And, she has been MY VOICE many times. I'm not as good with the written word as she--I go off on too many tangents! But, Becat writes with such emotion and feeling that I honestly don't know how ANYONE can read what she writes and not come away with a different viewpoint on OUR RIGHT TO A GOOD QUALITY OF LIFE!

I have been the "victim" (and, yes, I will say VICTIM) of my phisician not really listening to me (even when I thought he WAS) and have had to suffer the consequences of a bad drug reaction--even though I made him aware of the reaction ONE MONTH before he finally listened to me and took me off of the drug. I suffered withdrawal and haven't been very well since. I'm not sure if I'm going to go back to him, even though he has been my phsician (neurologist) for over 15 years. You see, he KNOWS that I have been reading about and LEARNING about RLS and medications, and HE DOESN'T LIKE IT! I am trying and am determined to be proactive in my healthcare.

We ALL have a right to a good QUALITY OF LIFE and the right to have our physicians LISTEN to us and not merely pat us on the collective heads just to satisfy us. RLS IS REAL! IT CAN CONTROL YOUR LIFE! AND IT MUST END!!!

Until then, we have great people like Rubyslippers, Sara, and Lyndarae (who are all great at communicating their feelings) AND Becat--and Jumpyowl, who is a good friend and doing absolutely wonderful things to help people--all of these people are here to help all of us--lead us--never let us forget what our CAUSE is.

Ruby, Sara, Lyndarae, and BECAT--you all are MY eyes, ears, and voice in this great fight!! God Bless YOU.

Jan
No one is alone who had friends.

becat
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Postby becat » Sat Feb 26, 2005 5:23 pm

bump

ViewsAskew
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We Move Questionnaire

Postby ViewsAskew » Mon Mar 07, 2005 3:48 am

Hey all, We Move is still looking for info about our expereinces with RLS. I decided to rewrite my quality of life while doing the questionnaire. Here is what they are looking for:

Life in Motion: Patient Questionnaire

Today, more than 82 million people in the United States live their lives challenged by a movement disorder. Countless among them do not even know that their shaking hands, their twisting legs, or their odd sensations have a name. Without a name, there is no diagnosis, no treatment, and no hope.

We need your help to remove the roadblock of namelessness and the isolation felt by many who think that they are alone in their struggles. Through a nationwide media campaign highlighting real people's stories, WE MOVE will give a voice to movement disorders by illustrating the obstacles that people with a movement disorder face in their daily lives -- stories written in people's own words.

Will you please share with us the difficulties that you have overcome and the triumphs that you have achieved, as well as the obstacles that you continue to face as a result of your movement disorder? Your story may reach someone who is living with the same disorder that you have --- someone who does not know that their symptoms have a name.

1. With what condition are you living?
2. How long did it take from the time you first noticed symptoms until you went to the doctor?
3. How long did it take to find a doctor to correctly diagnose the condition?
4. How many doctors did you go to before you went to a doctor who correctly diagnosed the condition?
5. What type of doctor diagnosed the condition? If you are willing to do so, please share with us the doctor's name and the city and state in which he or she practices.
6. Please tell us what it meant to you to have an accurate diagnosis for your condition.
7. What is your current treatment, including prescription drugs, vitamins and supplements, and over-the-counter drugs, as well as physical or occupational therapy, injection therapy, surgery, chiropractic therapy, acupuncture, or other treatments?
8. Has the treatment changed since the condition was first treated?
9. Please share with us some specific examples of activities that you could not do before you received a correct diagnosis for the condition. How has this changed since the condition was diagnosed and treated?
10. Sometimes, a movement disorder affects people in ways that are not visible to other people. How has your movement disorder affected you in ways that cannot be seen?

Please respond to these questions and give a voice to movement disorders by sending a message to us at wemove@wemove.org.

ViewsAskew
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2005 Quality of Life

Postby ViewsAskew » Mon Mar 07, 2005 3:50 am

"It's like an electrical current; maybe like from a cattle prod," I told my nephew. He asked more questions. "Is it like when your leg falls asleep?" "No," I said. I tried to explain again. And again. He wanted to know, but what he really wanted was to have "me" back. The "me" that didn’t need to leave before a certain time because I couldn’t stand the long ride home in the car. The "me that wasn’t too tired to play a game of Scrabble or watch his newest homemade video. The "me" that wasn’t always whining about how tired she was, or how little sleep she got, or how the medications weren’t working, or how it was affecting work. I wanted that "me" back, too.

RLS and PLMD have impacted my life as long as I can remember. At night as a young child, when I would spend the night with my grandmother, I would watch her move her legs like a sewing machine’s needle when she tried to sit in a chair, then hit he legs with her fists, then finally get up and start to pace, back and forth, back and forth. While my dreams were swirling in my head, she would still be up. Her doctors thought she was crazy. That she had 'mental' instabilities. But I knew she wasn't, because if she was, then so was my mom. And my uncle. Then me, too.

By the time I was in my teens, I occasionally had RLS. At first, I wondered if I imagined it, somehow secreting trying to belong to my grandmother and mother’s club. By the time I was in my twenties, I’d learned how to manage my RLS. We didn’t call it that, though, in our house it was called ‘jumpy legs.’ I learned not to get overtired. I learned not to drive late at night. I learned not to wear tight clothes on my legs, to avoid all caffeine, to know that new or strenuous activities would make it bad for a few weeks until I was used to it, to remember to put lotion on my legs every night before bed. It seemed manageable, much as my sister’s is right now. By my early thirties, I was kicking in my sleep. I never knew it, but my partner sure did because I was kicking him in the shins. We really didn’t think anything of it; my grandmother kicked, too, and nothing she’d ever tried had helped. At some point I even researched it and found out it was called periodic limb movement and often occurred with RLS. But the only help were the drugs my mom and grandmother had taken and they hadn’t helped them. It didn’t seem worth it to see the doctor.

Ten years later, I was sleeping 10 to 13 hours each night and waking exhausted. I kept a tally log of how many times I would wake each night. Some mornings I would count 30 or more tally marks. I thought maybe I had diabetes or a bladder problem that kept waking me. I was self-employed and started to turn away work because I couldn’t pay enough attention to do the work. I’d sit in client meetings and start to write a note but couldn’t get it on the paper because I’d already forgotten what was said 5 seconds ago. When I would drag myself out of bed, I’d sit at my desk doing nothing. When I had to use the restroom, I’d think it was just too far away; it was ten feet. RLS wasn’t a problem, though. I still could manage it by following my rigid set of rules.

The tests all came back normal when I saw my doctor. My thyroid was fine. No diabetes. Absorption in my gut was good. I mentioned the kicking in my sleep and the familial RLS. She knew a little about it and sent me to a neurologist and to have a sleep study. A few weeks later, I was officially diagnosed with RLS and PLMD. For the first time, I realized that I’d been sleep deprived for over ten years! No wonder I was so tired. No wonder I couldn’t concentrate.

The neurologist seemed to know a lot about RLS. I also did lots of research on the Internet. He put me on a dopamine agonist, the same one my research seemed to indicate. This drug became both my savior and me hell. It worked well on the PLMD. I stopped waking up in the night. I started sleeping normal hours. I was actually awake during the day. I realized how truly tired I had been but hadn’t noticed because the decline was so gradual, over so many years. But, within a couple of weeks, I started having RLS every day. I’d always been able to manage it before and only had it a couple of times a month. Now it was every night at 9 or 10 PM.

The solution was to take a little more of the drug, but split into two doses. It worked for a while, then the RLS started even earlier. So, more of the drug, taking it earlier. For over a year, I slept well, even though the RLS was worsening. For the first time in what seemed like forever, I was able to do things I hadn’t been able to do, like go on a Sierra Club trip to the Sierra Nevada Mountains and go hiking for a week. I started working more and was able to take notes and pay attention in meetings.

For 18 months there was a slow but constant escalation of symptoms and the beginning of other strange side-effects from the drug until the RLS was 24 hours a day. It was indescribable having the feeling constantly for days, unable to sleep, to rest, to sit, to read, to work! During that time, I also developed RLS in my arms! I cried the first night it happened, feeling that my body had been invaded and there was nothing I could do about it. The neurologist tried 3 other drugs over a several week period while we slowly reduced the drug I was on. One had no effect, two of them made it worse. In desperation, I took a last minute flight to the RLS Foundation’s conference; I talked to the attendees, I talked to the presenters, I asked every question I could think of. When I left, I had some hope. The drugs had caused augmentation and rebound, common side-effects with some of the dopaminergics. But, unless the disorder had significantly worsened, I learned that the augmentation and rebound would go away once the drug was stopped. In fact, it had already improved some just by reducing the amount.

I made my care a priority and expected my physicians do the same. I joined online support groups, read all that I could about my disorder, heard other people’s stories. I learned that there are no drugs specifically developed to treat this disorder. For RLS sufferers, it’s like a child getting hand-me down clothes—sometimes something fits, sometimes it doesn’t. I learned that finding the right drug or ‘cocktail’ of drugs is hard for many of us and can take years to figure out. And then it can stop working and you have to try a new drug or cocktail of drugs. I learned to listen to myself and trust my own intuition. I learned that doctors don’t know everything about RLS and that RLS has many faces and that it is progressive for many of us. I learned to question my physicians and, if necessary, find new ones. During that time, while waiting to get to a new sleep doctor and neurologist, I gave my primary care physician articles and the Mayo Clinic’s Algorithm for treating RLS and we did our best. I asked her to test my ferritin levels, something that hadn’t been done but happens to be important for people with RLS. It was very low and I started iron therapy.

I had to face some harsh realities at this time, too. Sleep disorders often cause depression and weight issues. Primary RLS is often progressive. It causes cognitive function loss. Learning that caused weeks of anger and fear: some people define themselves by how they look, some by what they know, others by who they know. I’ve always defined myself by how quickly I learn and how quickly I can do things. Losing cognitive function terrified me as it meant I’d have to redefine myself. I’ve had to grieve, as my life will never be as it used to be. I will always have RLS and it will always have to be treated. I had to come to terms that I will always need to take drugs and that the drugs can sometimes have side-effects that are not desirable. And that the drugs can stop working at any time and I’ll have to find new ones. At this time, I’ve already been through seven. I can’t have a glass of wine with dinner anymore, I can’t change my sleep schedule or drug schedule on a whim because we want to stay an extra hour at a friend's house after dinner, I can’t drive in the evening because I’ll have to take my drugs.

Eventually I met my new sleep doctor and had a new sleep study. I also met a new neurologist that specializes in RLS and movement disorders. Between them, I’m better. Not cured, but better. They have a plan and we’re taking it one step at a time. I’m sleeping again most nights and the augmentation and rebound are significantly decreased. I am hearing more about RLS all the time, too. This is good. More research is being done and now at least the researchers are getting closer to knowing what causes this strange disorder. With that knowledge, I hope that treatments and drugs will be developed specifically for RLS.

My sister has children; so far, no signs of RLS in them. But chances are high that they will have it as the rest of our family on my mom’s side all has it, to varying degrees. I wish for them something different should they end up with this. I wish for them to watch the sunrise because they wanted to, not because it hails the end of a dark, lonely and long night. I wish for them to be taken seriously when they see their doctors. I wish for them that they will have better drug options. I wish for them to fall into a peaceful sleep when they are terribly tired instead of thrashing in bed, pacing the floor, doing stretches, or beating their body parts with their fists.

I want something elusive, at least to me. I find myself wondering what I would do if I had something truly horrible, not just RLS. I ask myself how bad can this disorder be, this electrical current that keeps me on my toes and away from my slumber. Surely I must be making it to be worse than it is. But I am not. It is insidious. The lack of sleep day after day after day is like water wearing away at a stone. When it is at its worse, it affects all around me, my career, my outlook on life, my mental health.

Maybe, just maybe, we're getting ready to change all of that. Maybe, as a group, we've had enough. I'm choosing this time to wave my hand and get someone's attention. I want someone to listen to us. Hear our stories. And offer us some hope.
Last edited by ViewsAskew on Sat Oct 01, 2005 12:51 am, edited 1 time in total.

becat
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Beautiful

Postby becat » Mon Mar 07, 2005 4:27 pm

Just beautiful.
Thank you Ann.

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jan3213
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Postby jan3213 » Mon Mar 07, 2005 4:31 pm

Ann, it's Jan

I tried several times last night to comment on your Q of L statement, but I just couldn't. It was that moving to me.

I should have just said "beautiful" like Becat, because that's what it is--beautiful.

Love
Jan

P.S. Becat, I promise I'll get mine to you and it will be better than the first draft. hehehe
No one is alone who had friends.

becat
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Postby becat » Mon Mar 07, 2005 5:36 pm

Ok this is my statement for the We Move.org site.

*****************************************************

I am to be 41 yrs. old in March of 2005. I have been gifted this genetically from both my mother and my father. On my mother's side of the family there are more of us with RLS, than without. A mix of symptoms and levels of severity.

I am one of the faces of RLS. It is my first memory in my lifetime. Waking up in the dark, the middle of the night, alone and in pain. Tears already streaming down my cheeks. I am told that by the age of 3-4 yrs. old I no longer woke anyone up to help me. I simply learned at this young age that a hot water bottle was what I needed. Even at this young age I fixed things myself, no need for help when I knew the answer.

RLS has followed me all my life. Not knowing it was anything other than "Gowing Pains",in my mid teens I was hopeful I WOULD grow out of it. I never did.

At the age of 30 I broke my leg and ankle in 4 places, possibly my foot at the same time. From Dec. 14, 1995 I have never had a day without pain. The symptoms that had once before been only at night were now 24/7. The treatments of heating pads or hot baths, vitamins and supplements, Chriopractic and massage therapy seemed worthless. I resorted to multiple tests with many types of doctors. Cortisone shots in my foot and a magnitude of prescriptions along the way. It became a growing beast that slowly tortured my body and mind. What was once managable, turn my life upside down.

Sleep deprivation and pain were becoming a natural way of life. My family and friends suffered right along with me. However, I would hide as much as possible, because there were no real answers. Leaving me to feel as though I was making this all up. If it has no name and all the test come out negative, the medications don't work?????? I must be crazy. Not being able to explain what it was like is part of the nightmare. It seems hard to believe that a person can truely look healthy and yet the inside is falling apart. Very few truely understood my plight, this is in part my fault.

If I'm so tired, why not just go to bed? Bed was, is, a war zone for me. A place of battle.

I was only able to sleep 1-2 hours at a time before my body would rebel and the legs would wake me. Again in my 30's I had growing pains. I honestly did not believe my body would live long enough to get me to 40 yrs. old. I started to research sleep disorders 7-8 yrs. ago, roaming on the internet through medical libraries online. I can't remember when I heard about RLS, I know it was on the radio. My mom had seen or heard something about the same time. Even having heard a name for it, there was not many ways to find information. My sleepless nights turned into days, weeks, months. Time and dates simply run together. Being a mother of young, active children I slept when I could. Usually at the point of exhaustion.

Having been raised with few doctors, it wasn't my first choice to seek medical attention for this. A more natural approach was normal to me. I mentioned it by name for over 2 yrs. to both my GP and OBGYN. My GP tried the best he knew to help. My OBGYN labeled me with extreme PMS.

I continued my reseach and found two doctors I felt knew something about RLS. One just happened to be in my area and I made the appt.. I was put on Mirapex and responded very well for a short time. The daytime RLS was at bay, but the nights were still long and sleepless. We upped the Mirapex and again for a short time, weeks this time, it helped. Then came the request for multiple Neuto tests. I refused, much to my doc's dismay. I had already learned that if born with this genentic gift, I might respond the same way to medications. Being born with RLS I was at bay with treatments and choices. Many of the test that are used are used as deductions, more to rule out other illnesses, than to prove RLS. The one most helpful test was not offered. A sleep study.

I was not depressed, I was hopeless. Hopeless that my life had a chance of changing. That I would enjoy being me again. I would be able to function like a normal person. I was hopeless, that because you could not see my scars or wounds, that anyone would know how I felt. Overall, this is the worst part of having RLS on any level. To be without hope is horrible.

After almost three years of mounting pain, major effects of sleep deprivation, and failing health I thought I would likely die with in a few years. In a moment of clarity, I asked my husband to go to the doctor with me. Back me up, my story, our story. It was this that proved a turning point. I was no longer trying to control it all by myself. I was given pain medication and a sleep aide. This helped more than the dozens of bottles I had been given before. It was bliss, a slice of golden moments for me.

I still have problems with allitude, planes, long car rides. Overwhelming stress can still rendure me not able to walk well, but those are now attacks, not my everyday life. I still have pain, pulling, itching like crazy, but my life is better.

The point that needs to be made is simple. There is no real answers for those that suffer with RLS. Check your iron. Check the medications you currently use. Seek support from those around you, don't hide it. Hiding your symptoms and the fallout of them causes confusion and resentment. Seek support from others that suffer. Truely, they may be the only ones that understand. Educate yourself about RLS and it's treatments. You have the right to refuse medications and tests. You have the right to better choices in treatments. You have the right to work with a doctor that listens, tries to understand, and wants to work with you.

Living with any disorder causes grief, hopelessness, and emontional stress. Finding the right treatment for yourself and seeking support is the only way to survive it. The medical community needs to see us as worthy. Finding a doctor that listens and works WITH you is key.

There is hope. In the numbers of us that join together, making our voice collect and to loud to ignore.

ViewsAskew
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Postby ViewsAskew » Mon Mar 07, 2005 9:41 pm

Thank you, Becat, for sharing your story. I know it will have an incredible impact on everyone who is lucky enough to read it.

Ann


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