My Own Private Pity Party- It's an Over Nighter

I'm just falling apart here without sleep again I've been awake for

41 hours. My legs are acting up severe. I didn't make good choices

while awake this time. I ate a feast through the night.

My daughter is 17. She has plans to go to a carnival after they

work their shift. Rather than spend money on snacks and food

that is very over-priced, my daughter went out shopping and

bought up tasty snacks.. I found them and went nuts eating

them since I have been doing hardcore dieting for the past

few months. I bet that I ate more calories than I take in for an

entire week...it's been so long since..I was having a pity party

as is and what's a pity party without high calorie, high fat snacks?

I feel guilty as sin and she will no doubt be angry when she

wakes up. I have some shopping to do and driving to the store is

just not an option until I get some sleep.

Speaking of pity parties, I have to wait until Friday to talk with

my oncologist... I have one of those now.. I can't believe it.

The thoughts of having bone cancer at age 46 is really heavily

on my mind.. I had the tests, the blood shows that I probably will

have to wait to start chemo.. It's way too early to start any kind

of treatment for me. My proteins are just starting to thicken

my blood. It could take up to 20 yrs for the numbers to be

high enough....and I used to think that me having RA would

be the worst thing to happen to me.. along with RLS..which

is much worse than RA is. Really!!!

The stress of having even more tests to try to figure out this

RLS thing, the cancer thing along with my RA treatment is

making me absent minded and a little short on patience. I

am holding onto hope that there is a tiny bone in my back that

is making my legs want to run so badly.. that there are actual

little bugs crawling around in my legs that make them feel like

tiny brushes are moving about in my lower legs..or like centipedes

with sticky legs are living in my veins from the hips down..

I have some heavy decisions to make ahead of me and I am

not feeling all that great about my future... I am scared..wanting

to leave my family to run away from my life about now. It's like I

want to know but I don't. Without proper sleep and nutrition, my

body may as well be 6 feet under already. I feel dead.. I probably

look the part as well.

Only someone with the RLS problems that I have will understand the

quick cycles of depressive moods..and will be praying for sleep over

anything else in life.. It's been night after night after night.. and I want

a Vicodin to make it all go away. I actually need one and I am mad

that I threw them out... Today of all days would be my day to claim

the drug and I'd be sleeping soundly in about 30 mins. = /.

So that's my pity party for RLS, Cancer, RA.. and bad attitude.

[thedragon]

Oh yikes....I don't blame you one bit for having the biggest pity party ever....I just wish I had the words to help . I can hold your hand across the distance. If you ever want to moan ....I can listen......sending you love, cuddles and everything I can think of. Stay strong!!!!! We are all here for you x x x x x x x x x x z z z ........kisses and a few hopeful z,ds x

[thedragon]

How are you today sweetie x X X

[ladydawny]

God bless xx

Any good news?

[Hidden]

No news for another day. My family and extended family

is planning on sitting in for the news of my cancer report.

RLS is acting up so bad because of the sugar that I consumed

earlier in the day. Apple pie was calling my name every few

minutes until I gave in and doused it with Cool Whip. (Yum)

I managed to get some sleep prior to this bout of RLS.

I dreamed so clearly of being in a fight with my mother-in-law

for talking about me behind my back. The problem was that

I had no voice for her to hear so I had to whisper as loud

as I could.

My mother in law is two faced to people and discusses

personal things that are meant to be a secret with others.

She talks and talks me down for this RLS and medical

problems besides this problem. I get picked on for having

an off day of housework, cooking, taking care of my personal

appearance.. *I get down enough on myself without her help.

She's a bit angry with me that my husband is the only bread

winner in this house. Poor Todd has to work so hard... and

his wife sits and watches soaps, eats treats all day long.

That's what she thinks about this RLS...that it is just an excuse

to be lazy... She keeps telling me to get back to my job and

don't take naps at all during the daytime so I sleep at night.

(screw that, I rarely take naps)

All of what she thinks is totally wrong and she thinks that I

don't hear from others what she says about my Bogus

RLS and sleep deprivation.

She always tells me that she loves me and she worries. I can't

make sense of her judgement.

[Hidden]

Funny kind of love going on here Yikes, seems very selfish to me, it's so hard to get across to people just how much this illness puts us through, i wish we had a way to make them feel what we feel, pipe dreams i know,

I hope your cancer report is the very best it can be, huge hug's xx

[Hidden]

My mother in law heard the doctor that serious crap is

going on with my body but it's not, not, NOT Cancer (yay)

MGUS makes it 40% higher risk than the general population

for bone cancer. (scared to even say that aloud) We are

perusing another kind of treatment to fix those problems.

I would love to say a lot of bad things about my mom-in-law.

I never felt loved by her. I always feel judged because of

the way that I cook, keep house, take care of her son and

children. She considers me sickly with RLS, not really

understanding what it is or it's seriousness.

My oncologist belittled the condition today by telling me

that my problems with not getting enough sleep are purely

habit. He said that my body is following a routine that I

created by staying up. He thinks that I should NOT get out

of bed even if RLS is bad. He said that eventually I will

fall asleep if I stay there. I am not to drink any kind of

liquids or food past 6pm ... then there should be no reason

to visit the USA bathroom, UK toilet.. whatever you call it..

He would like for me to quit with the medicines because

they are hard on the body and they produce no results.

In his words, it's a matter of re-training my body to sleep

at night.

I want to kiss him for telling me not to worry for the next 3

months about cancer but want to slap him for belittling

a condition that needs to be taken seriously.

He did say the exact same thing that my mother in law said.

Habit.

Right about now I wish that my mother-in-law would walk

through my door. Dinner is in the oven, my house would

pass the 'White Glove" test. She never shows up on

a day like today. (darn it)

One thing that was said by MY own family was "Karen, don't

become a junkie on drugs" Ouch, that hurt me, a lot. = /.

I asked for Tramadol. My request was denied because RLS

is just a habit.. he said.

[Tiredparent Restless Leg Syndrome]

Some of that makes my blood boil! So much of our lives is dictated to by RLS. We would love to sleep at night and feel good the next day but it just doesn't always happen. People who do sleep, take it for granted and have no idea how it feels to be sleep deprived day after day and still do all the usual chores.

I think RLS is v hard to understand for non-sufferers and my mum would never be convinced that it wasn't partly brought on by something I was doing. Yes I sometimes have bad sleep patterns but it is pointless trying to come to bed if RLS is already buzzing in my knees or elbows.

If I have enough energy I'll do ironing or make my kids sandwiches for the next day when I can't sleep but if I sit down to watch TV, I don't always turn it off when the RLS has gone and I'm half way thro a good programme and go to bed! I regret it the next day when I'm tired though!

[Hidden]

My face is flushed when I read your moms thoughts. I've

heard that as well. I get ripped on for having to walk during

a movie or a seated event. I can concentrate on little more than

finding a spot to settle down my legs. Sometimes I miss the

entire plot. On car trips, I've been told to just "deal with it"

by family members who are always in a hurry to get somewhere.

The best one that I ever heard was from my own mum who

told me to put that energy to good use....I know that implied

to work harder, volunteer.. she calls it nervous energy.

I live where there is an abundance of fresh water lakes. Our

family loves to go fishing. I love it with my heart and soul but

I have to miss out or suffer immensely while sitting in the boat.

Catching fish is constant..at times. My legs often win the battle.

I end up doing squats in the boat and then I get told that the

fish won't bite cause I'm moving the boat. By the way, that is

never true of catching perch..a pan fish that is very popular

over here. They are attracted to noise.

I have caught a movie or two at night. I have to record the ends

because my legs are at another party.. Sleeping later into

the morning would be ideal..my legs seem to settle down at

dawn.. I can't always do that.

[thedragon]

Yikes...I am so so happy to hear your brilliant news!!!!!! Yippeee !!!!!!!

On the other note I am happy to say my family are pretty understanding but my other half gets pretty fed up with it all . We usually go to bed at the same time but never wake up together . Within 30 mins in bed my symptoms will start then I'm up finding moveing stuff to do! I might crash on the sofa in the early hours if my codeine works. I do sometimes wonder if it could be an unconcious habit at times. On the rare occasions I have a symptomless evening i think deep downloadsit will start soon so I am waiting for it ....so it does . If that makes any sense! Sending you joyful wishes!!!!

[thedragon in reply to thedragon]

3rd line up should read ...deep down it will.....!!!!!!!!

[Hidden]

thedragon, it makes perfect sense. =)

The joyful wishes have reached me. I feel like I have

a second chance, honestly.

I fell to my knees to thank God for no cancer. =)

(hard to do with a prosthetic knee)