Some days you row, others you float...

For everything and anything else not covered in the other WED/RLS sections.
ksxroads
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Some days you row, others you float...

Postby ksxroads » Mon Apr 24, 2006 9:43 pm

This is basically a place for my ramblings. Too often I find that my thoughts and reminders written on pieces of scrap paper become jumbled and scattered, much like my brain at times!

It is my rls comfort zone. Where I can review and sometimes remind myself why I am where I am in the treatment of this disease.

I am prescribed to take Ultram during the day and one lortab 5 at night to manage my RLS.

Dr. B suggested taking one week Lortab then one week Ultram. I did this briefly but found the hydrocodone (Lortab) wreaked havoc on my digestive system. So since the Ultram/Lortab combination seemed to work I kept up with that.

Last week reading my posts about how my dr wanted me to include the lortab during the day for my fibro, I reminded myself of Dr. B's suggestion to alternate to reduce tolerance/dependance , so I began taking the Lortab daily and would switch to ultram in a weeks time. The heart burn etc so far hasn't been too bad.

Then friday night the one lortab did not work. I experienced full body RLS.

Here I had been suggesting to others that maybe they would want to try stopping their meds to let the RLS level out and see if the meds were contributing to their problem. I chided myself that I would ever consider telling someone that & was this a voodoo payback! I was miserable. I took another lortab and a couple hours later another one. By 2am the RLS sensations were under control.

Was it the combination of Ultram and Lortab that kept the RLS in check? Did I want to go back to my routine? I decided I'd stick with the lortab and saturday and sunday I was fine.

So the only other thing I could think of was... on friday I had passed four fields being sprayed with anhydrous ammonia, a liquid fertilizer applied heavily in this rural area.

Before RLS diagnosis I had mentioned to drs that my *problem* was MUCH worse during the spring when fields were being sprayed. Yet let's face it, this is a rural area and I have no degrees... so the comment was always no it is ludicrous to think that it is something in the environment.

Today I still have this suspicion that some things in the environment do make it worse.

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

Music can be made anywhere, is invisible and does not smell. --W H Auden

becat
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Postby becat » Mon Apr 24, 2006 10:51 pm

Hi Hazel,
I, too, understand the change in seasons and the chemicals in the air, not to mention stress in life......ETC..........
I again let myself have a conversation with someone I love that I know only leads to frustration and distance about my "condition", it will go away someday you know. No it probably will not, and I pray everyday to have the will to "act" normal. So it all came down to not having enough will and brain power to wish this away. Bless us both.
I'm with you, I have a hard time telling anyone not to take meds when they are needed. I can't seem to do that unless an act of God happens. I need more than I take and am normally too cautious to ask for what I need....even though I preach that we should take control. It's just not that easy.
Honey, I'm rowing and I know others are too. Hope that duct tape is holding and the hanging down thingys are less this week.
Yes, someday we will float...............and may we all float together.
As normal, I talk to the moon every night, telling it to care for and keep well my many families.........your certainly apart of my family here and so the moon to you as well my dear.
Hugs from Tx.
Lynne

Penguinrocks
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Postby Penguinrocks » Tue Apr 25, 2006 11:43 am

Hello my ladies,

Frustration! What an awful word.
As I sit here, not going to work again, the guilt is building somethin' fierce! Then I think that too many people have taken me for granted...maybe they'll realize how much I do and how much I know and how valuable I really am.

Then again, they won't. They could care less.

I know all of you do! This is what gets me through. I speak about you all often especially to my neuro.

People think that I am just supposed to "suck it up" cuz it's not "real". :P on them I say.

Please just come sit in my body for one day! And hope it's a day of a major flare....then tell me "its all in my head".

My moon is getting more full and the faces that shine down on me are beautiful!

I love you all
Penguin
Beware the Penguin

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jan3213
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Postby jan3213 » Tue Apr 25, 2006 1:26 pm

Well, I can't believe this. I just spent 15 minues composing a reply to your posts and I lost it! Oh boy!

Well, I'm going to try to remember what I said.

Hello ladies---I understand how you all feel, I understand the level of frustration and people not "getting it"--most never will.

I don't know what's going on with everyone--it's been bad for a lot of us lately. My RLS has been so bad, I couldn't even sit through a Cardinal's ballgame last night--had to keep getting up and down. The people in our row were getting aggravated. Tough! LOL I've had to double up on my meds and those who know me know that I don't do that.

I called several pain clinics in our area---tried to find one. They don't treat people "like me"----only people with "real problems", sports injuries, etc. I called the neurologist I have an apointment with on June 26 (I haven't seen her before) to see if I could get into her sooner, explaining how horrible my RLS has been lately. "Sorry, we rarely have cancellations, we'll put you on the list, but I'm afraid it's almost impossible." I have an appointment with my PCP on May 12---I'm taking some things I've written to a friend in my moments of sheer desperation so my doctor can see how bad this is--how much it's affecting my life. I may even set up a camera--lol.

I thank God that my husband is finally---finally--getting it. Just the touch of his hand on my knee or an arm around my shoulder or a hug of concern means so much to me. He wants to help me, but he can't. He's concerned and does everything he can think of to make me more comfortable. He sees how bad it is... As far as anyone else---well, no one does (usually)---so, I just let them look at me funny at the movies when I watch the film from the back of the theater (which is every time we go, now). I'm dreading the drive to Florida this summer with our soon to be son-in-law along. I'll just have to have a talk with him before we go and explain that we'll have to stop often, etc. I've said this before---that I have to plan my life around RLS. But, I really DO have to do that now. It's getting worse and worse.

I didn't mean for this to be about me. I love all of you so much. Hazel, you're fighting several things....I know. Penguin, bless you heart---please think of yourself, as hard as I know that is for you to do. Lynne, oh Lynne. My heart breaks that you are having such a rough time. I wish I could wave a magic wand, but I can't. And, there are so many, so many who are suffering.

I'm actually holding it together pretty well considering my situation with RLS, PN and fibro. RLS is the most horrible right now. Hopefully, we'll all get some relief soon---some day.

God bless you all---

Jan
No one is alone who had friends.

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jan3213
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Postby jan3213 » Tue Apr 25, 2006 2:56 pm

Well, there's bright spot in my day. Hope the rest of you find one.

My new neurologist's office just called. There's a cancellation on May 16 at 9 am!!!!!! I guess I sounded desperate enough when I called yesterday!!!!

Thank God!

Love
Jan
No one is alone who had friends.

Penguinrocks
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Postby Penguinrocks » Tue Apr 25, 2006 3:20 pm

Please keep us posted Jan!!!!!
Beware the Penguin

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jan3213
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Postby jan3213 » Tue Apr 25, 2006 3:26 pm

I will, sweetie! You, too! Okay???

Love ya
Jan
No one is alone who had friends.

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lyndarae
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Postby lyndarae » Tue Apr 25, 2006 3:45 pm

LADIES You know I love you all so much, and it just breaks my heart to hear what you are going through..............because I know!!!!! Our loved ones feel so helpless and fearful wacthing us go through this. Day after day after night after night. Its a good thing GOD gave this lot extra courage and strentgh and compassion. I am so grateful I have all of you,you have made my life so much better and I have become a better person just by knowing all of you. Summer is here, and its time to warm our faces and come out of the gray, I am praying that we will get some peace even if it is short lived. GOD BLESS You are always in my prayers~~~~~~~~~~Lyndarae

ksxroads
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Joined: Tue Aug 02, 2005 8:19 pm
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Postby ksxroads » Tue Apr 25, 2006 5:04 pm

There is a new tape out there, gorillia tape! Going to see if it is as good as the duct tape!
:lol:

Its a good thing GOD gave this lot extra courage and strentgh and compassion. I am so grateful I have all of you,you have made my life so much better and I have become a better person just by knowing all of you.


:D How true, thank you Lyndarae for expressing something I feel too! Gratitude is a powerful part of healing, and the courage, strength and compassion of these wonderful people does make me a better person!

:D
Well, there's bright spot in my day. Hope the rest of you find one.
Jannie, I am so happy for you!!!! Boy can I relate to the desperation one feels when dealing with chronic illness. It is wonderful that you have something to lift your spirits and give you a sense of forward motion.

************Positive Energy*************** to our Ms Penquin. You are truly a special gift to all of us. Please banish all of those negative thoughts, you are a diamond and shine brightly!

I pray everyday to have the will to "act" normal.

Our beloved Becat, how it breaks my heart ... you are truly an inspiration to many of us that I can not for the life of me understand anyone who would question or belittle your intelligence or stamina. You have the strength to move mountains and your words always express the true wisdom of a loving mature soul. ***************Positive Thoughts and Energy********************* Now there is no need to waste our energy on ignorant judgemental people. *********BeGone Dreadful Dragons****************

All these years the Moon has been talking to me, now I am beginning to realize it has been all of your prayers.

Love and Healing thoughts to all, Hazey

For my notes:

this year because of burn bans, the farmers were limited in burning off pastures and fields. The alfalfa mill has not been overpowering. No significant dietary changes. So the only thing that may have directly affected my RLS breakthrough the other night was the application of liquid fertilizer on fields.

So far no physical problems from taking hydrocodone only. Till today stress has been fairly low.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.



Music can be made anywhere, is invisible and does not smell. --W H Auden

ksxroads
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Location: Kansas

Postby ksxroads » Wed Apr 26, 2006 9:35 pm

For the sensitive minded, do not read further! :lol: :D

Trouble with the constipation last evening, which I suppose is from the Lortab. So increasing my daily water, which I had not been drinking nearly enough. Increased the amount of time I did the Tai Chi. We shall see.

Have an unpleasant edgy feeling from time to time taking hydrocodone/apa during the day.

Have appt with Chiro for thumping adjustment. :lol: He said he has had patients with RLS. Maybe tomorrow I can get him to discuss this in more detail.


**********Positive Energy****************

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



Music can be made anywhere, is invisible and does not smell. --W H Auden

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jan3213
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Postby jan3213 » Wed Apr 26, 2006 9:39 pm

When I went to the conference in Orlando last fall, I met a couple who were at the same convention center to attend a meeting for Chiropractors. Both husband and wife are chiros. I had on my "RLS" pin and they asked me about it.

I told them I had RLS and they told me that they both treat RLS patients. I don't know exactly what they do---they may have explained a little bit, but I've slept since then. :lol:

Good luck.... Let us know how everything goes. I'm interested to see how a chiro would treat RLS.

Thanks
Jan
No one is alone who had friends.

becat
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Postby becat » Wed Apr 26, 2006 11:09 pm

Hello All My girls,
Have had a bathroom to remodel this weekend and then company the beginnig of the week, so my computer time has been hampered.
Hazel, 2 things.
Flax seed (T.) golden organic, ground and and used or drank right then might help with the backing up thingy LOL. I also know a few that sprinkle it over salad and get the same result. Plus it's good for hair, skin, blood pressure and your nails.
Chirapractors, I use them, have all my life, but it often results in problems (temporary for my arrms). I have a short leg, nope can't tell by looking at me and I have had whip lash, sometimes the back just needs it. But can't say it's helpful for MY RLS. But I like them and use them to keep everything in line and unpinched.
Gorilla Glue, I saw that too....Yes, laughed right out loud and thought of us here and trying to fix our oars.
Thank you my dear for your kind words. I know better than to talk to certain people, no matter the amount of love they have for me about something I cannot prove to them. But I love you for telling me those things. Great timing, my love.
Penguin, baby let them worry a bit about you and if they don't really care then your time off is golden. You need this, your body needs this, your mind and your daughter, need this. Don't take any **** for anyone that is close and know that you are worthy of the rest, painfree, love and time to yourself. Take a sandwich and hit the park wearing you green and yellow. Listen to the birds and enjoy the sun. Remember people are only telling you are # one , not being mean....LOL
Lyn, I messed up on what I sent you so will add another to the mail in the next couple of days. You are a blessed woman and I'm so glad your in our family.
Jan you voice is in my heart and I love that. Thank you for checking on me. I hope that you visit on the 12th brings some relief and I'll pray your doc is warmer to the thought that life needs not to be painful for anyone. God bless it was one of her own.
My grand thought for the week is family. I have many families, the one I was born into, the one I married into, the one that I have gotten through friendships, and the one here. So my moon hears about my families now. Blessed be us all.
side note. had jury duty and gave my card to a woman that was "trying to sit" next to me. I thought she would cry. We had coffee after we convicted the perp...(lol) and she was thrilled to know she was not crazy after all. She said how did you know? I said I can't pick my family members out of any crowd. LOL
Just loved it and really love you all.
Lynne

ksxroads
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Location: Kansas

Postby ksxroads » Wed May 03, 2006 3:32 pm

Opened the backdoor last night stepping out I saw this magnificant waxing crescent moon and I thought of all of you, especially you Ms Becat and howled! The puppies were thrilled!

Knock on wood I have felt fairly normal the past two days, at least normal for me and the mind is somewhat clearer ...

I did wake with RLS sensations in my arms yesterday and then last night two hours after going to bed woke with rls in the arms and legs. Thankfull for the medication!

Not certain if the RLS sensations are related to what I believe to be an increase in RLS sensations that appears to be seasonal or related to chiro vists and alignment issues.

Tomorrow I begin using Ultram for a week...

Ms Penquin I hope that you have found some time to be stress free! It isn't easy. ********Stress Free Energy*********** Hopefully these work related issues will be resolved, I know that would help you tremendously!

Ms Jannie, You know I love ya! Hope you are enjoying some pain free time... rowing madly stirring up hope that your neuro visit will be productive.

Ms Becat, did you see the tugboat? Sometimes things you need just appear! Bet that bathroom looks beautiful! Thanks for the info on flaxseed, I stopped and bought some at the health food store. We have been sprinkling it on our veggies and salads. The chiro told Will that with proper alignment and taking Coenzyme Q10 he hopes to lower his blood pressure... so I can't see where this wouldn't help too! That is a great idea, I think I'll make some cards to direct people to this website... yep we are easy to pick out of a crowd!

Lyndarae, **********Positive Healing Energy************ I know that it has been a rough patch lately, yet I know that you are on the right path! We love and support you in all of your efforts. Thank you so much for all that you do for us!

While the tugboat is handy, today I can row... so here I am stirring up hope sending it out to all of the others. Love Hazey
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.



Music can be made anywhere, is invisible and does not smell. --W H Auden

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jan3213
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Postby jan3213 » Wed May 03, 2006 3:43 pm

I looked at the moon last night, too, Hazey! Lynne, Penguin, Hazey, Lyn, Ann---all of my friends here---it was for you.

Lynne--you are always on my mind (Oh, Gosh! WAM, there's a song for you.... lol).

Hazey, wonder if we were looking at the moon at the same time???

Penguin, we're here for you.......

Ann, thanks for the good info lately and thanks to all three of you Mods for the work you do here!!

Love you all
Jan

P.S. That includes friends I know I've forgottent to list!
No one is alone who had friends.

ksxroads
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Postby ksxroads » Wed May 03, 2006 9:53 pm

Jannie, Bet we were! I just had a feeling when I saw it! :lol:

Too cloudy tonight to see the heavens, yet I know it is there and you all are too.

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



Music can be made anywhere, is invisible and does not smell. --W H Auden


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