WHAT DO WE DO?????

For everything and anything else not covered in the other RLS sections.
jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

WHAT DO WE DO?????

Post by jan3213 »

I hate to start off this morning with this thread. It seems like, even though everything to be grateful for (and I am!), I keep finding things wrong with my life. But, this is something a lot of us contend with, so here goes.

I just watched a segment on Today with Dr. Nancy Snyderman and some other woman who's an expert on nutrition and weight control. Their subject today is people who gain weight through their middle sections (me!) are subject to dimentia as they grow into their senior years.

Well, folks, you should see me. I don't just look like an apple, I like the whole bushel of apples. I've gained probably 50 lbs. in the last five years--maybe less. A lot of people (at least it seems like a lot to me) seem to treat me as though I have no will power. Sometimes I agree with them. Most times I don't.

Getting back to the Today segment, one of the things causing weight gain, of course, of sleep deprivation. Dr. Snyderman said that sleeping less than 7 hrs. a night is considered sleep deprived. Well, I'd like a showing of hands, please. Does ANYONE here get 7 hours a night? Does anyone here get 6 hours a night? How about 5? Oh, let's try 4. I won't go any lower.

I've been to a sleep clinic recently, I'm on medication that would kill a horse---I don't sleep. Rarely do I even get 5 hours. I go to work and if I'm not busy, I nod off and don't even realize I AM nodding off.

And, add the medication I take. Mirapex! I hate Mirapex. I NEED Mirapex but I HATE it!

I try to be a nice person, and I am...a lot of people enjoy being around me. But, sometimes I'd really like to scream because I'm tired. I have the day off today. Could I sleep? No. I went to bed at 9:45 p.m and feel asleep, then wide awake at 1:00 a.m. Up until 3:00 a.m., slept maybe another hours, then up again for good at 5:30 a.m. I know, if you do the math, it looks like I got more sleep than that between 3 and 5 a.m., but I was up and down several times.

Getting back to my topic subject. What do we do? What do we do to be able to sleep? Am I going to die early because I don't sleep? My body keeps falling apart: First, RLS; then gall bladder surgery; several bouts with bladder infections and subesequently urethal dilation; endometreosis which required indoscopic (sp?) surgery; then a broken foot; carpal tunnel surgery on both hands; spinal fusion T6 through T12, Diabetis II, and now diverticulosis which caused an acute attack of diverticulitis. This has all occurred (the gall bladder suggery forward) within the last 6 years. What next?

I know I sound like a whiner--and that's what I'm doing....whining. I don't sit around and think "poor me." Honestly, I don't. But, it really hit me this morning.

I am 60---will be 61 in August. I'm a senior citizen. Am I going to have all my faculties in 10 years? I don't know. I'm glad I don't know. But, I really, really, really wish I could sleep.

I know there are many of you on here who have suffered with as much or more than me. Some are going through bad, bad times right now. And, a lot of you never even mention what you have to deal with in your own lives. I had to get this out. I hope you understand. I'm not honestly looking for sympathy. You all have your own burdens to bear. I just wanted an ear.

Thanks.

Hugs
Jan
No one is alone who had friends.

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

Oh Jan I am so sorry to hear what is going on in your life. Honey do not ever apologize for saying how you feel. You know that we are all here for you 24/7.

You were definitely here for me and know you will always be. The part of sleeping I can definitely relate to that. If I ever got even 5 hrs straight like I have said in the past, I would feel like I died and went to heaven.

You have been through pure h**l this past couple of years and I still have you in my prayers and will never quit.

You definitely are not a whiner. We are all here for you for good times and bad and hopefully the bad times get less.

I have to agree about Mirapex as I do not like it either. I told hubby last night I wish I did not have to take it. The last couple of nights once five minutes before I took the med and the second night right after I took the med my legs started. I am sorry did not mean to get off of the subject and did not want to take this thread away from you as you are very important to me.

I really hope that you are doing much better today and will be talking to you soon. It must be mental telepathy as you have been on my mind alot and was going to call you last night and when I saw the time it was too late.

Take care my friend and love you.
Charlene
Taking one day at a time

lyndarae
Posts: 620
Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho

Post by lyndarae »

Dear Jan, I saw the same program.................and am an apple too. I have been trying really hard to watch what and when I eat but I know that da** mirapex is not helping matters. And the sleep depravation well HELLO!!!! Seven hours RIGHT not for this gal. Its down right scary and depressing. I havent gone through nearly all the things you have and consider myself lucky cause there is no doc that will touch me anyway without insurance I will just have to gimp along. I am glad you vented this morning instead of holding it in cause we all know how that works for ya>>>>>>>WHAT DO WE DO?????? Good question? I wish I knew, if its not one thing its something else.

But I know you hon and know whats in your heart and how positive you always try to be through everything you have gone through. And you know the rules around here....... its ok to vent,scream,cry and just get down right angry. That interview only added more fear to my list and I have too much on it already.

I listened to it and thought about measuring myself but why confirm what I already know about my belly fat..... But the one thing I will not do is worry about the future for me because that is in GODS hands he has a plan for me and I am not in control of it. I know in my heart that I am a good person and treat people the best I can and why I have rls and whatever comes along with that is just the way it is. I didnt cause it and I cant fix it, all I can do is live with it the best I can.

And most the time I do alright there are other times that I fall apart.I look in the miror and dont know who I am anymore. I work my butt off, and I dont have one but by gawd I have a belly go figure..... For me sometimes I feel like food is one of the only pleasures I have left, its comforting and taste good, until I have to think about what I just put into my body. Whats a girl to do!!!!!

On a brighter note my Daughter Breeze had the twins on Tuesday morning the boy, Chase came first at 6.5 and the girl, Aria next at 6.3. Can you believe that such big babies for twins. They are all fine. So that makes me nana of 5 grandbabies.

I pray they dont have rls, their mom does. Hopefully those of us that have gone before them will be able to lead the way for better things for them. You know I love ya girlfriend, if you want to talk give me a call. I over did it yesterday and am having a time out today and would love talking to you, or pm me and I can call you its a jammie day for me and my belly fat.

Hey I did buy one of those big balls to roll around on and it is great fun, no damage yet just some things knocked over. I am here for you, and hear your pain and fear, hang in there kiddo. Love ya~~~~~~~~Lyndarae the apple
You cant be brave if you have only had wonderful things happen to you

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Post by sardsy75 »

>>>>>ROLLING "OH WOE IS ME" SOAPBOX OVER TO JAN<<<<<

Hello my dear :)

It's definitely your turn on the "oh woe is me" soapbox!

I hear you hurting, I hear your pain. I wish there was something I could "literally" do for you, other than send my best wishes and prayers.

I know where you're at with the world in general. It's not a pretty place. It's hard, but you're one tough lil nut!

My dear friend, you've been here for me so many times when i've hit the ground with a thud. Well, i'm here for you. I know I don't have the "life experience" as a lot of the others on the board do (which makes me feel like the proverbial child around here lol) but I love you, I love the way you lift people up with your positive posts. I love your courage. I love your understanding. I love the way you keep trudging on ... being stubborn and not letting it all get the better of you ... well ok ... maybe it has right now, but hey, that's ok ... we're all allowed a "oh woe is me" week every now and then ... and it's your turn right now.

You're allowed to vent, scream, cry, mumble, throw a tantrum, whatever. You know us. We're all here for you. We'll be here for you for however long you need us (or until we get booted off lol).

Sleep ... that ... "thing" ... that my nearest and dearest seem to be able to "do" as soon as their head hits the pillow ... it's the darndest thing! You know what i'm going thru, so won't rehash it (everyone who doesn't know can just sit and wonder hehehe).

As for the weight thing ... I was at the grocery store yesterday. It was an interesting trip. Quite empowering and emotional. I haven't slept well for gawd knows how long. There was a young girl, probably around 7 or 8 years of age; she had a basket-ball and all you could hear throughout the ENTIRE store (quite a big one mind you) was "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... you get the picture lol. Her mother was completely oblivious to the noise.

I had a bit of a gander at the other customers and couldn't help but notice the frowns of disapproval from the elderly customers, and the grimaces on the faces of the staff ... so ... this lil girl's path eventually led her in my direction ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" ... "BOUNCE" (it echoed around the store beautifully!) ... and as she came towards me she looked at me ... and I looked straight back at her ... right in the eyes ... one of those ... "have you NO manners?" looks. Well, that did it, she toddled off to mommy and said that I'd told her to stop bouncing (hmmm ... since when do eyes "talk" so much???). The bouncing stopped and I said out loud "Ahhh ... Peace at LAST!" ... to which "mommy" replies "my daugther has every right to bounce her ball!" Yeah right ... out on the court sista, but not in a dang grocery store!

"Mommy" then does the really smart thing and starts hurling abuse at me at the top of her lungs for doing something I didnt even do. I looked her kid in the eyes ... last I checked that wasn't illegal ... ??? LOL

Of course, Ms Hyde took full advantage of the situation and I let rip right back at her, not with abuse, but simple questions and comments: Did she realise how much racket her kid was making? Did she realise how disruptive the noise was to the staff? What about people who have headaches or migraines or who have just finished shiftwork and just wanna go to bed and all they can hear is BOUNCE ... BOUNCE ... BOUNCE ... BOUNCE ... BOUNCE ... BOUNCE ... BOUNCE from a kid who has no respect for the people around her.

I turned around to walk away and I heard "Yep, keep walking you fat a$$ed b1tch!"

Hmmmm ... low blow!!! ... Not the best thing to say to Ms Hyde ...

I turned around and told her to bugga off home and turned to go again ... "Mommy's" comeback ... "Bring it on you fat a$$ed b1tch!" and she started towards me (by this time staff members were appearing from all directions lol) ... bad move!

We stood toe to toe, eyeball to eyeball ... She looked me up and down and said with a snooty sniff said "Look at you!". To which I replied "Don't ever judge a person by their looks! I wish I could lose 30kilos, but I can't because I'm sick and despite my best efforts I am what I am; and here's the best bit ... I COULD BE DEAD IN FIVE YEARS!!!" No response ... not surprised.

I turned on my heal and strode away; lettin the staff deal with her ... she was still on my "fat a$$ b1tch" case as I turned the corner to get away from her.

To my complete surprise, a total stranger came over to me and said "I wish I had just an ounce of the courage you just showed. I was getting so annoyed with that girl and you were brave enough to put a voice to every person that was being affected. I am proud of you and you should be proud of yourself!"

By that time I was in tears from the adrenaline of the confrontation. The staff came nowhere near me lol ... interesting! Musta spoken on behalf of everyone in the dang store! I could still hear "mommy" going off at other staff down at the front of the store.

All the while, this very kind stranger kept talking to me, calming me down and telling me over and over that it was a wonderful sight to see someone take up the collective voice ... and come out the winner. Her point was that "mommy" had only one line for me ... "fat a$$ b1tch" ... which didn't get her too far in the confrontation.

What does this have to do with your post Jan? I reckon its ok to LET 'ER RIP every once in a while. Get it totally outta your system! Yup, you're the nice person that everyone knows, doesnt mean that everyone else is allowed to be NOT nice and you arent allowed to.

One of our dear friends said to me recently "Girl, you have enough on your plate to have a buffet!" I don't think she'll mind me borrowing that line. It surely applies to you right now Jan, but you know we're all here for you. I have an almost daily verbal battle with someone about the number of drugs I'm on. I hate every single one of them! But I can't give up! I gave up alcohol (I was only a social drinker). I've limited my dairy intake. I've given up Coca Cola and dont touch anything with caffiene in it. It sucks, the amount of crappola we have to go through just to get a few hours sleep.

I'm right here with you my dear friend ... you vent as much as you want.

Sending you lots of love, ((((((huggles))))))) and positive healing energy through the soft moon.
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!!!

KBear
Posts: 393
Joined: Fri May 04, 2007 11:41 pm
Location: Wisconsin USA

Post by KBear »

Great story Nadia, to bad nobody stood up with you (I would have). Just one other person saying to her face that you were right and her daughter was out of line might have shut her up.

Back on topic, Jan, I worry that your story is my future, at 46 I weigh 10 pounds more than I did when I was 9 months pregnant I need to lose at least 20 pounds and 25-30 would be nice. I also had a recent bought of diverticulitis and was hospitalized, I have high cholesterol, plantars faciitis in both feet, poor circulation in my legs since a blood clot (DVT) 4 1/2 years ago, my blood pressure was up last three doctors appointments, and I consider myself to be on "hysterectomy watch" because my periods have become hellish.

I know that only I can prevent the continued decline, it's in my hands. So, I am exercising as regularly as I can, I am eating a healthy balanced diet. I had to learn what this is because most of us were raised on the SAD (Standard American Diet) and we don't have a clue what good nutrition is. Guess what, it invovles eating good, fresh, wholesome, tasty food, not cardboard crackers and artificial sweetners. I am also fighting to get the 7-8 hours of sleep a night that I know I need. This is an ongoing battle as today I am waiting to hear if my prescription will be refilled for the next three months.

Which brings me to Mirapex, it's obviously NOT working for everyone who posted about it above so why continue to take it? I guess my definition of RLS relief is being able to sleep. If I want to be up all night I can do that without drugs. JMHO but if you are still not sleeping time to go back to the doctor and say THIS IS NOT WORKING. Get in there and demand that those doctors earn their paycheck!

Wow, guess I need to get up on that soapbox too. :wink:
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I think we do what you did. We get upset, angry, frustrated, we vent, talk to friends, cry, then we try to get help, feel better, and then do it over again. And again. And again.

It seems to me that my cycles get a bit shorter - or rather that I can't handle as many things before I "lose" it. These days a broken fingernail is enough, lol.

I think that the truth is that we don't know what to do or what will happen. All of these stories they tell us? I think we'd be better off not to read them. As you said, Jan, DUH! And, so what? As a couple of you said, we TRY to eat healthy - most people are amazed at my diet compared to their own - am I thin? Far from it. And, as I sleep worse, I weigh more.

I read the same story on the internet yesterday....I literally stopped reading it and did a mental hands overs ears, eyes closed and "nahnahnahnahnahnah". I can't take in more about the horrible things that "might" happen to us.

OK, it might. I also might get hit by a bus. I may be playing a stupid mental game, but it's the only way I know how to somewhat protect me from being in a constant meltdown.

I don't know if it will work, but I've been trying to focus on the things I can control ONLY. Or things like new research that shows POSITIVE gains.

As I type this, I'm trying to put it all in a new perspective, mostly because, like you, I'm not happy with this news. But, also because this type of sensationalism related to dieting makes me CRAZY.

That leads me to this thought...why the heck do they tell us things like this anyway? Doesn't every person who is overweight KNOW that it's not the best for them? Doesn't everyone of us KNOW that eating veggies and fruits are better than donuts and ice cream or fat-laden meats? Doesn't everyone of us KNOW how to count calories or fat grams or whatever the latest diet fad has us do?

You bet. I can almost guarantee it. Oh, sure, some younger folks may not have been sufficiently indoctrinated yet, but let's be real. You cannot live in most cultures (not all, but....) without being bombarded with this info and the desire to be rake-thin and then the resulting diets - grapefruit to Atkins to cabbage soup to South Beach.

And, I'll guarantee something else. Segments like the one on TV only sensationalize it, make us feel worse, and make us feel like we are horrid humans because as Jan said, we just don't have enough CONTROL.

Well, BULL you know what.

(Wow! I was on a double soap box - my blood pressure must be through the roof!)

I don't know how successful the book is, but there is a very promising book called the Four Day Win. Her humor makes me groan at times, but it's a great way to honor your attempts at weight loss...and your failures. Another great book is called "When Women Stop Hating Their Bodies." This led me to a truce with my body that I kept for years. I abandoned the truce a couple of years ago and this had helped me realize that I need that perspective back.

I don't have a clue if we'll all be dead early, between heart attacks and dementia, but I do know that I refuse to be fat and unhappy because someone else told me being fat is bad. I may be thin, or I may be fat, but I'll find a way to be happy.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

lyndarae
Posts: 620
Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho

Post by lyndarae »

This is a really good thread thanks for sharing Jan. You know this has helped me not feel so alone in my struggles. And they are many, to me it is amazaing what happens when a thought starts going in your mind a suggestion or whatever. For that women to call Nadia fat explains it all. Its like the worse thing in the world, as women we all want to feel pretty and get into those cute clothes.

Well anyway I do, and to be called fat is worse than a slap in the face. I was skinny all my life until rls took over my body and mind. And yeah exercise, sure thats all good but very difficult when you can bearly make it through the market without your feet on fire and your legs screaming.

I can hardly lift my legs to get my pants and shoes on, without falling over. It sucks, thats all there is to it. But if I can just focus on the good parts about me I feel better about the rest of it. But those days seem to be futher and futher apart, I seem to be putting myself down more than up. I get so angry at myself for doing this and I have to try really hard to change the way my brain is talking to me all the time day after day.

I am telling you what without all of you, I think I would be living in a cave in darkness without a hope or prayer. But you all give me the strengh to buck up and face the truth, yeah I am over weight, I am in pain, I dont sleep. But you know what its what lives in the soul of me that counts, and if people dont want to take the time to ffind that out its their loss.

Can I deal with this you bet I can, I dont have a choice I can either crawl into a ball our hold my head up and go out there and do battle, with a smile(fake) most of the time but hey I would rather be that person than that women in the store, I wonder what is her story??? I wonder if she has rls too?? Interesting thought.

We are all in this together!! All I can do is keep on truckin, one day at a time, and keep the faith that everything happens for a reason and GOD doesnt make mistakes~~~~~~~~~~~Lyndarae
You cant be brave if you have only had wonderful things happen to you

waterloo2
Posts: 466
Joined: Fri Mar 16, 2007 5:51 pm

Post by waterloo2 »

Hi Jan

Im like you at the moment im struggling to get through everyday. Im sorry your having a bad time at the moment hang in there girl. Being in UK I don't understand that programme.
Your not a whiner I know I am at the moment I always seem to moan a lot lately but I cant help it.

Love gill

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

controling weight

Post by mackjergens »

I dont know if this will be of help, but like you I was 50 lbs over weight. I just turned 61 and last year it was discovered I was diabetic. My Dr kept telling me to lose weight all I had to do was cut back and exercise 20 mins, 3 times a week. Of course I blamed it on all the meds I was taking and the lack of sleep, he always said NO that is not the problem.

Well after becoming diabetic, and HAVING to watch what I eat, cutting out ALL white stuff, such as bread, potatoes, rice, and of course all the SWEETS. I lost 30 lbs. with NO exercise. So what has this taught me?? Its really not that hard to lose weight IF only you eat healthy. Was that Hard for me.. YOU BET it has been, as I was a coke cocola addict. And a perfect breakfast for me was a coke and sweet roll. I would rather have a piece of chocolate cake as I would a steak dinner. Loved white rolls, and all that type of stuff. Now I eat only WHEAT(whole) bread, lean meats, veggies and fruits.( amount should be no larger than your fist) It has taken me almost a year to really adjust to this type diet, now its become NORMAL for me.

How ever I do have a big helper for me, as IF I do not eat this way I FEEL awful, eyes get weak, head hurts, etc./etc.
I dont go hungry, as I eat 3 meals a day and 2 snacks aday. Those just happen to be healthy foods.

Food for thought, be very careful about being over weight in the middle section, because it will also cause you to become diabetic. Sure wish I had thought about that afew years ago. I would not be diabetic now IF I had watched what I ate back then.

So want encouragement to lose weight, think about all the health problems that being over weight can and will cause. Heart, diabeties,stroke, high blood pressure and I think the list goes on and on.

Question why are we our worse enemies????????

Polar Bear
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Post by Polar Bear »

Jan, thanks for starting this thread.

I am also an apple, a 59 year old one... starting to get a bit of a wrinkly skin - known to us humans as cellulite etc. etc. I relate to what all of you say. I have about 5 hours sleep each night with only one awakening if I am lucky, and this is pretty good. If I am not lucky..... well who knows how many awakenings.... or whatever. A slice of toast in the middle of the night - so what. !!! I try to eat healthily.. and then slide a little.

Sardsy.... class act in the supermarket. The Mom needed her chain chugged, and didn't you do it well. Wish I had been there to stand at your shoulder.

Handclap all round
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Sorry you're dealing with so much these days, Jan. It does sometimes seem like the ailments gang up on us. I'm certainly no expert on how to lose weight! Tuesday was the 5th anniversary of my gastric bypass surgery, which was one of the best things I've ever done. But I still manage to be heavier than the "normal" on the insurance charts.

Years ago I was checking out at Sam's club and the woman behind me kept ramming her cart into my backside. Finally I asked her to stop doing that, and she snapped "If your butt wasn't so big, I wouldn't have to do that." Sheesh.

I did read something recently that one of the benefits of being slightly overweight is that heavier people have less risk of Altzheimers. I don't know that I could find the source for that information. There were a couple other benefits.

And the sleep issue? I suppose you could just keep telling the doctor that whatever you're taking isn't working, and ask for something stronger. Tried Zyrem yet? I about need general anesthesia to sleep at night, but at least I can sleep during the day.

Best wishes with it all.
Susan

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

OMG just finished reading some of the other posts how can so many people be so insensitive to people's feelings. I would like to take them and just smack them right across their face.

No one and I mean no one should be treated this way. This takes me back to my working days and I went to lunch with one of the gals and some lady came in and she made a remark about how heavy she was. I just about belted her and told her if she ever talks that way again I will never and mean never speak to her again. Until you walk in their shoes it is best to keep your mouth shut at all times.

I hope that everyone is doing better and I have been so blessed to know each and everyone of you.
Charlene
Taking one day at a time

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Hi everyone----

After I wrote my first post, my husband and I left for the day and I just got home. Wow! What great replies!

I appreciate each and every one of them--

I appreciate the experiences some of you related (Nadia--GREAT story and I love the way it all turned out!!!). And, Susan, the woman banging her cart into your back--Geeze, the nerve!!! People ARE rude and insensitive and sometimes downright mean!

I appreciate your advice and recommendations. By the way, I am already diabetic. I'm pretty sure I mentioned that in my "woe is me" list of ailments. If I didn't, just add it to the mix. And, as Ann said, I know what I should and shouldn't do---what I should and shouldn't eat. And, again as Ann said, I'm sure most people who don't know me would be surprised at how healthy my diet is. I DO eat some things I shouldn't, but, on the whole, I do pretty good.

And, exercise? The only exercise I can do now is walk---which I don't do enough of. Especially in the winter. I have those stupid screws and rods in my back (12 screws, 2 rods about a foot long each) and I can't twist or turn my back, which most exercise require--surgeon's orders. But, I admit I don't walk nearly enough. And, I sit here and KNOW I could improve a lot in my life.

Ann, thanks for the names of those books. I'm definitely going to check them out! Body image is a difficult thing to deal with for women. Oh, Lyndarae, I was always small--very thin until I was in my 40's.

As for Mirapex, I wish I had never been put on it. But, I've been taking it for approx. 15 years and I tried (with Ann's help--remember Ann?????) to get off of it. By Ann's help, I mean that I would get on here and cry and Ann would get on and talk me through it and try so hard to help me get over the hump. I wasn't strong enough, I don't think. I gave in to it. But, I DO think I'm going to talk to my neuro about the new patch during my next visit. I want off the darn stuff!! Ann, you were great during that time.

All of you have been there for me and you continue to be. And, I know I'm not in this boat alone. As Lynne (Becat) says, we just need to have someone else row it once in awhile.

I love this place. I feel a lot better about things tonight. I don't know how I'll feel tomorrow, but I DO know one thing: If I don't feel better, I know that I can come here and read, post and maybe whine again. Everyting will be okay.

Love
Jan
No one is alone who had friends.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

ahhh, I love coming into a group hug and vent.

Great begining post, great answers, and honest sharing. Gotta love and learn from each story shared, without doubt.

Jan, I'm even prouder that you posted it here, in this thread. It's an honest part of what RLS does to the rest of our lives. It's not only that insomnia is a known form of torture, but it invades our bodies own ablity to heal itself normally.
The honest nature of the side effects of medication, forget about medications, as in you take more than one thing. The harsh truth that without medications for some ( or many here), life would lack quality.

When reports like this come out I always think about the red M & M stories and the cancer they cause, back in the 80's (maybe ?). Guess what they don't. They figured out what was in the red dye and it turned up many places, was removed from the approved list and whaa llaaaa, red M & Ms are now in the bag.

I had to stop reading most of what came my way a while ago. At some point I didn't even explore RLS news. I sometimes hear things, just like that report you and Lyndarae saw, and have to laugh.........DUH is right! All they had to do was ask me, you or any one of us and we could have told them that without the money and time wasted to prove it.

You just want to say "YO, we're telling you what it's about, could we move on to treatment and better things coming. HEY!"

Your no wimp, give in, or easy to sway kind of girl, my friend. I know your struggle, not mine as mine is the opposite, I don't eat much.
However, I have watch my other family members, and my in laws, most were large as children, almost like they were born with that body type!

I have seen some of my love ones do those whacked out diets, seen their pain when that doesn't do what it does for others. They just weren't small people, never were going to be. NO MATTER WHAT THEY DID.

The kicker is that for the most part and up until an older age, it never was a health issue. They could and did out work anyone I ever met, and were never sick for years and years at a time. So I guess you can be a bit heavier, and still be Healthy! Its true.

Your active, your striving to live healthy in every area, and those Dang Docs do not know everything they think they do!!!!! Yes I do think your medication and insomnia hurt your weight issue.

But your are getting healthier. Maybe this needs to be said of all of us that have gone through a horrible time, some that stretch in to years, going without proper or any treatment......
We may have to pay for the harm cause during those harsh times. I had never thought of it that way before right now.
Maybe we do have to pay for that time somehow. Makes me think our docs should be more urgent about sleeping well, and we as RLSers are going to make that happen. At least for ourselves.

I'm so tired I'm off to bed, but couldn't let you think that you were doing something that you couldn't take control of or that you didn't let yourself think you were being a wuss. Your not, my sweet friend.

I hope that we all good to ourselves, even go as far as a treat tonight, tomorrow. May we all have a bit of Nadia's fight left in us! :wink:

Lynne

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

jan3213 wrote:
As for Mirapex, I wish I had never been put on it. But, I've been taking it for approx. 15 years and I tried (with Ann's help--remember Ann?????) to get off of it. By Ann's help, I mean that I would get on here and cry and Ann would get on and talk me through it and try so hard to help me get over the hump. I wasn't strong enough, I don't think. I gave in to it. But, I DO think I'm going to talk to my neuro about the new patch during my next visit. I want off the darn stuff!! Ann, you were great during that time.

Love
Jan


I do remember trying to be a cheering section. I KNOW how horrid that stuff is (in this regard). I ONLY got off of it with opioids. I NEVER could have done it alone (tried twice). Well, maybe if I were on a desert island or in a prison. But, not with it available to m, because by day 4 or 5? You're literally begging for relief. It's truly one of the hardest things I've done. Quitting smoking was easier.

Dr B is pretty clear about that in his letters that he writes on the site. AIf you're trying to stop it and have augmented, use an opioid. After the symptoms taper down, there are lots of options.

I hope you like the books. Munter and Hirshmann (When Women Stop Hating Their Bodies), also wrote an excellent one called Overcoming Overeating. A lot of the ideas in the Four Day Win are similar to Overcoming Overeating, but I like the Four Day Win better in the sense that she helps you more to work through HOW to handle some of the issues with eating...and overeating. None of these books, to my knowledge, address physical issues, though, and these are such a huge component of all of this.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Post Reply