It's Early, Quality of Life Plea for 2005

[becat]

I just have to say Thank you and wow Jan, what a great job. I know you've had so many things to deal with, not to mention RLS and Fibro. If there's a flu out there this year, it's found you.
Your help, again, with this project is special. How could any of us feel that we're alone in this with you on our side. I don't think your voice was too high at all!!!!! LOL
I'm hoping that your feeling better this week and gaining some health back into your body. I am so thankful for your statement. I hope it did make you feel bettet getting it off your chest. You know my promise is the same as last year.........I promise to take your statement to Orlando and see to it that those in our community here our voices.......I'm so glad your one of them, not glad you have RLS, but I take you on my side anyday.

Ann, I thought you questions were awesome ones about how did this make you feel to write a statement. I hope we get some response to it.
As for me, I had no idea that it would be so tough to truely examine what What RLS did to my life. Like Jan said how easily it took over the thought process, even before you know it.
After I finally wrote mine last year, I felt like I had vented a lifetime of anger and frustration. It did make me a little sad at the many discoveries I made along the way......HOWEVER, I did get angry about not having a good treatment path and I found myself more focused than ever on getting one. Not only that but there were things I felt like I could leave behind, move forward. I knew I no longer let it define me, but was apart of me. I felt like I gave myself more choices by simply letting go of the way I saw it. Ya, I got mad, but I used it to make a movement forward.
Now, I see them as a way of keeping current with how my progress is going. It's good to look back and see just how far I've really come. Last year when I wrote mine, RLS was still the leader of my life. It told me what I could do during any given day. I learned so much last year that it would have been impossible for me to ignore the fact that we, the people living with RLS seemingly had no voice.
Anyone else? I really would like to know if what others think about the personal impact of these statements.
For me it helped to know that I was saying what I wanted to the people that were working For us.......in reasearch, the medical community that deals with this, and this foundation.
I see it as a way to voice our concerns on a personal level.

[ViewsAskew]

Yes, I'd agree with what you said, Becat. Mine helped focus me, too. It helped me get in touch with my feelings about it--anger, sadness, grieving. While I was able to harness some of that to help me push my docs, it also helped me come to terms with it. Watching them change has been interesting, too. It was grounding to do this and the process made me more honest - no minimizing, no grandstanding.

Ann

[jan3213]

Hi, it's Jan

Thank you so much for saying what you did about my statement. It wrote it so fast, I couldn't even tell you what I said. It was from my gut. I had feelings I have had to get out for a long time. The rest is for you and Ann.

It was hard getting to the point of writing that statement. But, once I started, I couldn't type fast enough. The words and feelings came from somewhere deep inside of me. I think they were just waiting for me to let them out. I feel better. I feel more in control. If it weren't for this stinking flu bug I'm fighting, Becat (ha), I'd be doing cartwheels. Well, maybe not! But, I feel empowered. For the first time EVER, I don't feel intimidated by doctors, even those I haven't seen yet.

I faced my demon. I screamed at it and told it that I'm not going to let it win. And, it isn't going to!

Jan

[becat]

I agree and thank you both for your comments. It's nice to know how this can effect people when they write a Quality of Life statement. It was just the begining for me. I knew that I could come here and write my thoughts. But there was something different with this. It was personal. I meant business. It's a bit like the project itself. All of the seperate mental rants I do, processed out on paper. You find out what your issues are fast.
But collectively it's a bigger picture. I'm forever having to understand things in that manner, to move on.
Last year, I was angry, sleep deprived, in pain, and out of hope. I wasn't the only one. I know people read those last year. Ann and I both have seen the impact.
Q of L was and is meant to put the real faces of RLS in the minds and hearts of those that on our behalf. Researchers, Doctors, drug companies, our foundation. It's a chance to put our faces on their work. Having read the statements, they are each one person's world. The voice for their family, their friends, the story of their lives.
Put even 5 of them together and share them. Different people, different symptoms, different treatments. Well, that's 5 people that became a real thing to the community. Their story crosses the minds, hopefully the heart. Let them feel why we need the hard work, partnership, our voice on what we saw as important.
I got more out of it than I could have know. It probably was a good ending to the grief process, maybe helped me there. Coming to terms and finding my honor. By that I mean, I am worthy of a good treatment and a interested partner in my success.
Great thinker post........love it. Just what I needed Thank you both.

[jan3213]

It's Jan

My Q of L Statement, 2004, focused on my inability to sleep. I probably talked about other things, but I remember, vaguely, saying that the one thing I missed was sleep! Oh my, how I've changed! I was like a little child last year compared to this year. I've worked through a lot, and now I'm ready be my own advocate. Thank all of you for being MY wings, for listening to me over and over, for picking me up when I fell, and for being my strength when I had none. You ARE my family and I love you dearly.

Much love
Jan

[becat]

Last Night the hubby and I got together with friends for drinks, dinner, and a show. It was the coming out party of sorts for my husband after his surgery.
I'm sure your thinking what does this have to do with Q of L ?
Well, the evening started out at one couple's house for cocktails. The husband is a picture/video nut. One of the things he wanted all of us to see was a video he had put together of our trip last Feb. to Reno. We are all bowlers and had entered a National Tournment. They took me along for my handicap score and charm.....I don't bowl well, even after almost 9 yrs straight.
Anyway, Last year in Feb. I had not found a good Q of L. I had not been lucky enough to happen upon RLS.ORG and it's wonderful support group/discussion board. I had little to no pain control. I was in the middle of my Mirapex mountain, upping the dose with little to no good effect.
By the time I got to Reno, I could barely walk. High alltitude, the plane flight, and you knows the combination that I was dealing with.
At this point my friends had seen me not "feeling well", knew I didn't sleep often, but had never seen me in an attack that left me unable to move normally.
We all went out gambled, had dinner, and then to bed on Fri. night. Sat. during the day we all drove to Tahoe to play for the day. I was in the throws of RLS. My husband and I park ourselves, I couldn't keep up with everyone. The trails were icy, I couldn't hike. We choose to meet them for lunch, so I didn't have to try to hike or slow them down. By the time we needed to bowl, I was in trouble. I took a whole pain pill that lasted some 45 minutes. At that time I didn't take pain meds., so it was not a normal thing for me. It was not my best moment or games I've ever bowled, but I simply could not walk. Bowling was out of the question, but I did it. Not well.
Anyway, last night while watching this video I wanted to cry. There in this room with our very best friends. I realized that I went on the trip but I was not there. So many of the pictures and tape, hubby and I were missing. When it came to the bowling part, I saw what a struggle it was to get my shoes on, walk, throw the ball. Understand we were watching this to see the "no looky" strike I had. First ball of the tourny. They think it's cute that I throw the balll and never look to see what happens to it. Everyone is laughing and I'm ready to cry for this woman that I see. My husband looked at me, he had not seen me bowl that night. He looks over at me last night and mouths, "your really hurting there" with this face /
I nodded my head. No one else in the room saw what we did, nor did I expect them to. It was just a moment that my husband and I had. I just wanted to cry. I felt so bad for him, missing out on some great moments with our friends. I also felt bad for that woman in the video and the pain she was dealing with.
It was as lonely as I had ever felt. All of my wonderful friends laughing and somehow my husband and I were witness to something far different.
This was video proof that Quality of Life counts.
This board. These wonderful people. My husband and his compassion for me, his care. My own resolve. My education. It all brought me to a picture I got this morning from the video nut.
Last night I danced.

[jan3213]

Becat, that was beautiful. Just beautiful. I read it to my hubby. HE LISTENED. HE REALLY LISTENED. Then we talked. Thank you, Becat.

.

[ViewsAskew]

becat, I agree with Jan. I had tears in my eyes when I finished reading it. And Jan, what a great gift you got and found a way to use.

I had a 'spuse RLS experience' last night, too, but different. We had friends over for dinner and I mentioned that we really hadn't done much over the winter - no movies, plays, visiting friends, entertaining, etc. My DH looked and said, "Well, it might have something to do with the RLS hell we've been through. We lost 8 months of our life."

In that moment I realized how hard it was for him, too. I knew it intellectually, but I really felt it last night. He is very private and for him to say that to friends, even close ones, was very telling to me. I have been seeing this from primarily my perspective; he gave me the opportunity to realize that he is part of this too.

Ann

[Kris]

I have had RLS since I was young. I know now that my father had it - he would jerk and kick at night. It was a joke in our family almost because sometimes he would wake up going ...oh oh oh ....so loud we'd all hear him and wake up.

I also was told that I had growing pains. My shins and calves hurt a lot when I was a teenager. It was worse after I had karate lessons - those nights were the worst. Mom would say that I was excited and couldn't settle down. I thought I had the heeby jeebies - which is what I called this for a long time.

Mine was intermittant, and I was ok for the most part if I did not drink a lot of caffiene.

During my pregnancy, it got very bad, but I thought it was just being pregnant. I was so exhausted during the day that I would sometimes lock my office door at lunch and sleep for 30 minutes on the cold concrete - right on the floor. I didn't care, I was so tired.

I've always been one to be late for work since I became pregnant. I can't sleep ever since the time I was pregnant until early in the morning - see how it is 3 am here? I am typing and stretching my hand and bouncing my legs. I am exhausted and so tired - I did not sleep last night either, but the Mirapex is helping the pain.

What was bad was when I broke my ankle. No one knew it was broken - my talus bone. They said it was a 3rd degree sprain, but they didn't treat it at all. Just an air cast and no pt - nothing. About a year later, the pain started. I dealt with it for 4 years, but it got so bad that I could not stand it. I could not walk. The fact that I cannot walk well because of the tarsal tunnel syndrome and osteochondral defect makes it all crazy.

I was working on a different degree, hoping to change careers YET AGAIN to try to deal with this, but the college I was going to was not handicapped accessible and I could not walk the many stairs with the bad foot, and even though they moved the class to a lower level, I just couldn't sit still. Class was incredibly painful for me. During this time I was in my stormtrooper boot - a big air rocker boot. I was the top of my class, but I had to drop out.

I was in a big rocker boot for 6 months. I think it was during that time that the RLS mutated. It was a definite change. Around 3 or 4 pm, I'd get - not the heeby jeebies - but electrical sensations up and down first my left leg - the injured one - then the right leg - and then, a few weeks later my arm and hand. It feels like bees are buzzing in my limps down deep and sometimes like the muscles are trying to pull away from the bones.

I'd go to the doctor - begging for pain meds - I didn't know why this was spreading - I thought I had bone cancer. No one could tell me that I wasn't just going to die. IT WAS SPREADING. I thought I had sciatica. I have to stretch my hips a lot because it is bad in my right hip and lower back.

One night my husband took me to ER. I was in tremendous pain and could not walk b/c of the foot, but I was feeling like I was going to explode - my muscles were coming off the bones! My b/p was 180/110, normally it runs 120/70. They just looked at me and told me I needed to see my podiatrist. A family member came over and gave me some lorcet and a klonopin. It was illegal, but it was compassionate.

I got a timer. I didn't do anything more than 15 minutes. If I rested, 15 minutes - that helped the RLS. If I say, washed dishes - 15 minutes or the foot would go crazy. I had to quit my job. I live on my foot and legs' schedule. I try to sell on eBay some to make ends meet. I can't do much of anything to be honest, but that's something that is easier schedule wise. Computers keep me busy - and being mentally busy really helps, but when I type too much, my RLS goes crazy at night in my left arm. I have to twist and rub it all night.

I had great tickets to the Russian Ballet. I LOVE the ballet and was so excited about going. However, it was at 6pm and THAT day the RLS started at 3pm. I couldn't go. It would have been torture. I can't do a lot of what I WANT to do.

I had bloodwork - all ok. Extensive bloodwork - all ok. I had EMGs - the left leg - demyelinating with possible some neuropathy - dx Severe Tarsal Tunnel syndrome with all branches of the tibial nerve involved. Very abnormal latencies. The right leg, and the left arm - ok, latency, low range normal. That's all I know.

That is when my doc came in and I was sitting there rubbing my leg and I was talking to him, he was asking me about the pain - I told him I had not slept any - my poor husband was exhausted with me getting him up all night, I was exhausted - and I was shaking my arm, and my doctor looked at me and said "YOu look restless" I told him I was exhausted. Then he started saying do you feel better when you move - and I said Well it is worse if I don't move. I had already told him that it starts about 3pm, sometimes as early as 1pm, but usually my mornings are ok.

He diagnosed me with RLS and put me on Mirapex. It helps, and I will never admit that sometimes I just fall flat asleep. I don't drive - I've read that if you fall asleep like that you should never drive. I won't admit it because he might take me off of it. I was cutting some stickers out and the next thing I know my husband was picking my head up off the table and the papers and I was drooling. lol I was OUT. I would about fight someone for that drug though. I still have problems getting to sleep, but I do sleep when I go to sleep and I do have some nights now I just go to bed and sleep. I feel a lot better overall with it. I hardly have to have any pain medicine now, and even the tarsal tunnel is better.

I will not have surgery no matter what on the tarsal tunnel because I know I will go crazy if someone puts me in something that immobilizes me. At least with the rocker boot I could take it off at night, but it was sheer torture. They say the surgery won't work in my case anyway.

To top it all off, I've went from a size 7 to a size 20 since my foot became so bad. Tai-Chi & Dogpaddling around in the pool are the only exercise that helps and doesn't hurt the RLS. I used to be quite athletic before all this.

Sorry I rambled, but I thought I'd tell it all.

[becat]

What difference do these make?
Well, because of the stories I've been told, seen, and sent...I just got finished with a 2 1/2 hour meeting setting up my group meetings in the DFW area, here in TX..
This lovely woman that coordinates the Neuroscience group for a major hosptial group. Anyway, she is the go between for docs, staff, support groups. She has some ears to bend.
OK, all she really knew about RLS she had from the information here on the website.
It was the personal stories I shared with her that helped her relate just how much of an effect RLS could have on someone's life. Surgery staff need to know about the drug interactions. Nurses need to be able to identify this problem, as oppposed to someone just being unruley. When the issue was brought up I mentioned Jan's story about her surgery and crawling down the hall for hours.
When we travel. I mentioned myself, Nadia, and a couple of others that face mounting issues with the idea of how to travel, problems involved.
When we talked about sleep hygiene, ANN I used the conversation we've had about bed time habits. How important it can be to feel you've followed the same thing everynight. How scary it may be for someone to travel or ot be able to follow those things, because sleep is such a goal for many of us.
I mentioned medications, education, support from family and friends.
I can't tell you all how much of a huge difference you've made with one person today.
I know that this hospital is a teaching hospital, there will be a new generation of docs, nurses, etc.......that know us. Believe us. Maybe even try to understand us.
I thank each of you for your statements. I thank you for your honesty and bravery it took to share your stories. YOU EACH MADE A HUGE DIFFERENCE TODAY.
Bless you all and yahoo for all of us.

[ViewsAskew]

The RLS community is lucky to have you, my dear. While we have contributed what was in our hearts, you have used it to make a difference. Thanks to you, and to everyone else here, who takes the time to make a difference in some way - answering posts, writing QoL statements, informing your doctors or nurses or friends. All of this is so important.

While Requip's manufacturer may be making commercials primarily to get lots of extra money by selling lots more of their drug, all of this publicity allows people like Becat to create a deeper interest and awareness. What a gift.

Ann

[jan3213]

What a wonderful friend to call me immediately after your meeting with the lady from the Neuroscience group. How can I EVER thank you enough for making ME feel like I had a part in something so wonderful? You always do that, Becat. And, you ALWAYS KNOW just when I need that little extra boost. I'm just one small person who had a little problem before surgery and I have one of those personalities--you know--get to know me for five minutes and ten minutes later, you'll know my life story! Well, that's pretty much how I started life on this Board. I believe that surgery exprience was the first things I shard with all of you. And, if memory serves me correctly, Nadia and Jumpy respoded, with Becat right there in the middle.

All I did was talk, like usual. That's all. But, I DO feel passionately about RLS and the fact that sometimes No ONE wolll listen no matter how hard we try to make ourselves visible.

I cried when Becat told me about her meeting and about the lady. She went into quite a abit more detail on the phone. It's been a bad two weeks for me. I probably have rheumatoid arthritis, although I haven't officially been dxed. I've had to deal with a neuro who seems not to care about my pain. My GP is OK, but doesn't really want to handle my pain THAT MUCH and on and on. I have an appt. with a rheumy on 9/20. Last night, I watched my toes, LITERALLY WATCHED my toes blow up like sausages, did you know you can actually WATCH them do that? So, today, when Becat called and asked me if I was having a bad day, I cried and said, "Maybe it is all worth it. Maybe this is why I'm going through all of this." I'm no one. I just Jan. I'm no one. But, as Becat has told me so many times lately, I AM WORTHY, and you know what, WE ALL ARE WORTHY! And, today, I FELT WORTHY! Maybe it's going to start in the Dalls-Ft. Worth area. THE CHANGE! Maybe that one little light that we have talked about for so long is going to start in Becat's area. And, if I had to suffer, and if Ann, and Nadia, and even Becat and the rest of us who wrote those Qality of Life statements had to suffer to get to this point, then IT'S WORTH IT so that some little baby or some young woman or some grandmother or father or cancer patient won't have to. I cried today because I'm just Jan but today, I made a differnce.

THANK YOU SO MUCH BECAT FOR LETTING ME KNOW! AND FOR ALL OF YOU MAKING A DIFFERENCE TOO!

JAN

[becat]

My love and hugs to you both.
It is all of us working this into a new generation.
Thank you for the very kind words. It was a wonderful meeting and I felt great walking out of it.
I couldn't do what I can or do without all of your support and heart behind me.

[becat]

bump for all the newbies............Add yout voice to ours.
Thanks in advance.

[sardsy75]

Man oh man ... i've been away from these boards for way too long!!

Jan, I only just read ur post above (Jul 15) and you, my dear girl, have me in tears.

I know you're just one person living the life that you have been "blessed" (or you probably see it as more "cursed" some days like i do), but like you confirmed, for not only yourself but everyone in this group, you are a very, very worthy person ... and together as a group like we are, we make one very giant worthy fist!!

Individually we go through what we think are the worst times ... yet they are the times we have been chosen to go through for a special reason. Think of it in scientific terms ... we are the guinea pigs who will hopefully help find the solution to this "problem".

Each person on these boards has been given an individual life to experience and an individual voice ... yet ... together we can make a very loud noise. It may take a while for us to be heard, but one day someone will be listening ... and it will be the someone that we have all been waiting for.

I held an 11 day old baby in my arms this afternoon. All I could do was gaze into his eyes and wish he was mine. He just gazed back at me with all his innocence, having no idea of the thoughts and emotions that were rushing through my head about passing on rls to my own children, being absolutely petrified of just being pregnant, and then wondering how to cope with it all afterwards. (I know, I shouldn't think that far ahead, but it was a lil hard to avoid today).

You're right Jan ... we need to be heard so that people, both so young and old (and everyone inbetween) doesn't have to suffer what we go through ... and our wonderful Becat is, for the moment, our loudspeaker. Everything has to start somewhere, and what Becat has started with the QOLS is our stepping stone to being heard by the people who need to listen the most.

I haven't yet redone my QOL statement, but Jan, you've just given me a renewed boost to do it ... thankyou!

((((HUGS)))) to both of you Jan and Becat (will be really big ones if i manage to pull off the trip in Nov!)