"Crazy Sexy Cancer"

I watched this documentary tonight about a young woman, Kris Carr, called, "Crazy Sexy Cancer." I felt like I could have easily removed the word "Cancer" (and all things relative to that disease) and replaced it with "Myositis", because her thoughts, feelings, emotions, and fears so closely mirrored mine. If you didn't get to see the documentary on TLC, I strongly suggest you find it and watch it. It's a truly inspiring way to look at life regardless what your "Cancer" is.

"She shaved her legs!"

She is Jada.
She is 6 years old.
She thought her legs were too hairy.
She used her Mommy's "whipped cream" and razor.
She only had one cut.
She forgot to shave the back, and a few other spots.
She's been told not to do it again.
She says she won't (with a smile).

Last night wasn't nearly as eventful as the previous night, but incredibly frustrating. I was awake until 5:30am because my muscles were a complete mess. Imagine two hands wringing out a towel, but instead of the towel, insert my muscles. I was exhausted and wanted nothing more then to fall asleep. After I finally did fall asleep I had to get up at 9:00 am because we had someone here to do work on our security system. I didn't get a chance to sleep again until after noon and there was no quality or quantity to report. I should have just stayed awake.

I've been digging around online for some answers regarding my muscle relaxer and hallucinations. Some people still continue the meds because they can't find anything else that helps them sleep through the night. Others gave up on the drug immediately. I'm thinking that I might continue the med and if something else happens then I'll quit. Right now I'm just so desperate for some quality sleep that I almost don't care if I have to fight off imaginary intruders. That's how freakin' desperate I am. Pathetic, isn't it?

Imaginary bed fellows...

Last night I couldn't fall asleep. I was awake until 2:30am. When I finally did fall asleep I found myself scared half to death. Someone was in my bed. I went to bed alone, but I could swear someone was there. I screamed at the top of my lungs and punched and kicked at what I thought was a person in my bed. I jumped out of my bed and ran into my HUGE gentleman's dresser. Books went flying and other stuff fell off the dresser. I flipped on the light and there was nothing in my bed. My heart was pounding and sweat was rolling down my neck. My oldest niece showed up at my door and asked why I was screaming. I told her I would tell her in the morning and I put her back to bed.

I got back in bed and turned out the lights. Within minutes it was happening again. I jumped up and turned the lights on again. Nothing there. Confused and scared, I talked myself into going back to bed AGAIN. I was assuring myself that it was all in my head. I fell asleep for the third time and damn if it didn't happen again. This time I threw pillows at the person/thing and they hit my blinds. Lights on for the last time, heart pounding, and not a damn thing there. I was NOT going to sleep again...

Then my youngest niece was at my door. She couldn't sleep. I gladly let her in my bed. I did not want to be alone, even if it was only a 6 year old to keep me from losing my mind. We talked for quite awhile and then it started storming. Thunder was booming and my older niece was back in my room. I told her to make a bed on the floor and she could stay with us.

EXHAUSTED at this point, I finally fell asleep and didn't awake until 9:30am.

WHAT THE HELL HAPPENED? Was I dreaming or hallucinating? Whatever it was, it was the scariest thing I've experienced. My Mom asked me if I mixed up meds or something. The only thing I can think of is that I've just recently been taking my muscle relaxer on a regular basis at bedtime. Upon further research I found out that the drug I'm on has been associated with hallucinations or psychotic like episodes and should be stopped immediately when either happens! Well, I guess I'll be phoning my doctor tomorrow...

This past week my parents went out of town. I was on my own for most of the week and it was fairly uneventful. I stuck close to home most of the week and took it easy. I had to watch my nieces on Friday, which is one of the main reasons I didn't do much of anything. They are always so good and helpful when they are with me. It also makes a HUGE difference that they can pretty much take care of themselves now. I couldn't handle them if they were babies or toddlers with all the diapers, feeding, picking up, putting down, chasing, etc. I just couldn't do all that anymore. So, we just made the best of our day and went to the pool. Thank goodness the humidity was gone or I would have had to keep them inside. I found a nice shaded spot and just chilled out. I only get in the water a couple of times because I can't tolerate the direct sun long (even with super high SPF) and also because I fatigue so easily.

When they left Friday night I immediately crashed. I slept all night, got up this morning for a chat with my parents, and then went back to bed for about 4 more hours. I'm tired and sore. I've been working off and on this afternoon completing my Social Security Disability Review paperwork - my hands are killing me from writing. Fun. Fun. You have to list nearly everything and anything about your health - I'm surprised they don't want details about when I use the bathroom or blow my nose! Yes, it's very detailed. Anyway, I have no problem letting them know all the crap I deal with. My life is not a picnic. Some might think it's just dandy to not work and be home all the time, but it truly isn't. There is zero fun in being chronically ill. Trust me, I'd trade places with a healthy person any day of the week.

Dieting Update

Tuesday is my weigh in day, last week I only lost a pound, but today I was 4lbs lighter then last week! WHOO-HOO!

Wet Noodle

Last night I took a bath for the first time in nearly 5 years.

My last experience with a bathtub was nowhere near enjoyable. I found myself trapped and had to yell for help to get out. I LOVE the feeling of soaking in a hot tub full of bubbles, but my muscles relax and go limp as noodles making it very hard to climb out. I really shouldn't have gotten in the bath tub last night because there was no one around to save me if need be. I still ventured in anyway...

I lounged in the HUGE garden tub with bubbles up to my chin. The water was so hot you could see the steam in the chilly bathroom. My skin was bright red, as if I had been burned by the sun, (a normal reaction, for me, to the hot water) and my muscles were melting from the heat of the water. I didn't stay too long for fear I might be stuck all night. I drained the tub and sat there while my body cooled off a bit. I made it out with some creative planning (a towel here, another one over there for something to grip onto and some odd twisting and turning), but barely made it to the bed. I was wiped out, but feeling incredibly relaxed. I slept so sound, never moving, which is extremely rare but entirely welcomed.

The question now is whether or not I wait another 5 years.

Ups & Downs

Having a chronic illness is all about the ups and downs. Last week was one of those weeks that went from one extreme up to one extreme down within a 24 hour period. I started out on Tuesday morning going to the dentist for a filling replacement & some other minor work. My youngest niece, Jada, came with me and after the dentist appointment we ran a few errands. After a quick stop at home, we picked up my older niece and headed to the movies. (The Simpson's Movie) I was feeling SO good that day and I just had endless amounts of energy. When we arrived home in the early evening I started coming down and feeling not so hot. My mouth had been numb the majority of the day and it had just started to feel normal again. That was when the pain set in. My jaw, mouth, and head hurt so bad I could hardly stand it. I was miserable and spent most of the night unable to sleep and crying.

The following morning I ran into my Mom in the hallway. My eyes were swollen and my face was too. She freaked out at first, but I explained what the problem was and that I just needed some down time to heal. I pumped the pain pills in and kept ice on my face most of the day. Oh, and on top of things, my mouth problems coincided with my "Wednesday Wipe-out." Wednesday was just miserable, but with another day came some relief. My mouth still ached, but I was on the mend again.

Since that oh so lovely experience, I've been doing okay. I spent the past two days with my boyfriend and we watched all three Lord of the Rings movies -- not just the regular versions, but the long ass extended versions. My body is a little out of whack from sitting on the couch for so long. My muscles are pretty much exhausted even though I didn't actually do anything. This morning I was standing in line at the post office and my thighs were trembling. I was afraid they were going to give out and I was goin' down. Thankfully, I made it out of there without taking any spills. Anyway, I liked the movie a lot and it was worth it.