Saturday, January 29, 2011

Just One Day

A couple of days ago it occurred to me how much my illness is affecting my family, especially my 12 year-old daughter.  I have known from the beginning that the changes in our lives due to my illness have affected my family.  However, my daughters and my husband have dealt with it remarkably well.  Especially if you compare to how well I've dealt with it (not well).

My oldest daughter, Kylie, has been talking to the counselor at her school since she has been going there.  She has been talking to him a lot more this year than in the past because of my illness as well as the other problems resulting from it (i.e. finances, decreased activities, etc.).  A couple of months ago, I contacted the counselor and told him I wanted to talk to him.  I wanted to discuss with him what Kylie has been talking to him about as well as advice he may have for how to deal with this.  Since he has been a school counselor for over 20 years, he has a lot of experience with kids and their emotions.  I talked to him by myself and with Kylie in the room.  It went well.

A couple of weeks later, the counselor gave Kylie a book to read in order to help her better empathize with what I'm going through.  It is very difficult for a 12 year old to fully understand what a chronically ill person feels everyday.  Hell, it's difficult for most adults to fully understand.  The name of the book is "If I could be sick for you for Just One Day" by Kathy Cramer.  It is a short, picture book so I have copied it at the end of this post.

When I first read the book it brought me to tears.  Kylie said that she had read it with the school counselor.  However, she didn't discuss it with me at all.

Now, back to a couple of days ago.  I had been in bed all day due to the pain and weakness I discussed in the previous post after my weekend away.  That night, after my 4 year-old had gone to bed, Kylie came into my room crying.  I don't just mean a few tears.  She was sobbing.  She immediately laid down next to me and started crying on my shoulder.  For the first few minutes I couldn't even get her to calm down enough to tell me what was wrong.  When she finally took a breath long enough to answer me when I asked her what was wrong, she tossed the above mentioned book towards me and said "I just read this."  She cried and cried for about 20 minutes.  I couldn't get her to calm down.  All I could do was comfort her, tell I am sorry, and that everything will work out.

This is the first time she's done this.  She has talked to myself and my husband about it a lot, but I have never seen her break down like that.  The one year "anniversary" of me being sick has obviously gotten to her also.  When she was crying, she mentioned that it's been over a year, I'm supposed to be getting better but I seem to be getting worse.

It took everything I had in me to keep from crying with her.  I just hate that it's because of me that she was so upset.  I know I am not doing it on purpose and I can't change anything.  Unfortunately that doesn't make me feel any better.  I love my family so much and I can't stand that they have to deal with all of this.  It's one thing that I have to, but I wish it wasn't affecting them so much.

If I could be sick for you for
Just One Day
by Kathy Cramer

I wish I could be sick for you for just one day.
I would let you go outside and run and play!

I would swallow the pills that don't want to stay down.
You could stick your head out the window and ride all over town.

I would shake and chill the way you do.
You could go sail on a sailboat - be part of the crew!

I would feel the pain that you endure.
You could go out for a big dinner... order dessert, for sure.

I would dream the dreams that can be scary and dark.
You could fish on a lake and walk through the park.

I would do your wishing to feel better soon.
You could stay up late and sleep until noon.

I would look through the cards that were sent by friends.
You could eat popcorn and candy until a movie begins.

I would walk your path with heavy tired steps.
You could drink lemonade and sit out on the deck.

I would feel the faith that you hold in your heart.
You could walk through the market, smell the flowers on a cart.

I would eat the food that doesn't taste right.
You could ride a roller coaster and squeal with delight.

I would look out your window and wonder why.
You could visit all your friends just to say "Hi!"

I would hold your anger that comes and goes.
You could walk barefoot in new grass and wiggle your toes.

I would do your wondering of what is to be.
You could read a book under a big shady tree.

I would listen to the footsteps that come and go. 
You could sit by the fire or play in the snow.

I would lie in your bed for that day and night.
You could sit and watch a sunset, blazing and bright.

I wish I could be sick for you for just one day.
But since I can't... by your side I will stay.

This book also has beautiful illustrations by Steve Harmon.
You can find it, and other great books at Tristan Publishing

Thursday, January 27, 2011

The Final Countdown

I have made myself some coffee and I have artificial energy, so now is the time to type away.

You may or may not have noticed the countdown on the right side of the page.  That is the countdown to my follow up appointment with the physician in Atlanta.  At that appointment I will receive the results of my muscle biopsy and blood work.  This is a big deal for me.  I have been waiting a long time for this.  I have a lot of hope that I will finally receive an accurate diagnosis on March 1st.  In addition to a diagnosis I will find out, therefore, the prognosis, treatment, etc. 

This is the first time that I have been hopeful that I will finally find out exactly what is going on with my body.  I left Mayo last spring with a diagnosis of POTS.  I didn't, however, feel that that was the end.  I have just known that something else, in addition to POTS, is wrong.  The treatment the doctors as mayo gave me has not worked and their prognosis of when I would get better has been proven wrong.  That has reinforced my thoughts that something else is wrong.  I am confident that I will get a definitive diagnosis at my appt. on March 1st. 

Having a definitive diagnosis means a lot to me.  Even if there is no cure or even a reliable treatment, I will be so happy to know what exactly I'm dealing with.  I can, therefore, do research myself on treatments, raise awareness of whatever rare disease I may be dealing with, and/or work on fund-raising for such disease to help find a cure.  These are all important to me.  I am a fighter, but right now I don't know what I'm fighting for (other than the general idea of being healthy) or against.

Last weekend I really enjoyed a weekend away from home with some girlfriends.  I invited my good friends as well as a couple of new friends down to the Lake of the Ozarks for the weekend.  Yes, I know there's snow on the ground and it's freezing outside.  However, we had a blast.  We just stayed inside all weekend playing games, reading, drinking, smoking (if you are the long arm of the law, we were smoking cigarettes, of course) , and laughing.  It was so nice to get away from home, away from the kids, and spend a little time with all of my friends.  I would've really liked to get away from the one thing that causes me so much stress, my illness.  But, alas, (yes, I said alas) that is not possible. 

The one thing I hated about the weekend... KU lost to Texas!  Their first loss of the season and it had to be when I was watching it with a bunch of crappy ass MU fans.  At least I had two of my fellow KU alumni there.  But listening to the others was excruciating.  Maybe that's why my head hurt so bad on Sunday.  And just because I feel like it...  
Take that!

Because I can't take a vacation from my illness, I was miserable on Sunday and Monday.  I was in tears both days because my pain and muscle weakness were so awful.  However, it was worth it.  I only wish I could laugh that much more often.

My problem now is that I don't have anything to keep my mind off of the countdown to March 1st and/or Spring.  If I'm having a good day, it's not so bad.  However, on Monday, when I was in bed all day in excruciating head and leg pain, I didn't think there was any way in hell I could wait until March 1st. 

On another note, I absolutely HATE winter!  I hate that it's cloudy all the time.  I hate the cold.  I hate having to get bundled up just to walk out the front door for two seconds.  I hate having to drive in snow and ice.  So, what I'm trying to say is that I'm not very fond of winter.  I almost always have problems with depression in late Jan. and early Feb.  So, since I have problems emotionally dealing with my illness, and it's late Jan., almost early Feb., someone please make sure there aren't any sharp knives in my house.  (Okay, that was a joke.  No one call the police to have them take me away in a straight jacket.  I am not really going to harm myself.  I might harm my pre-teen, but not myself.)

I think I'm going to add another countdown to my blog.  A countdown to Spring.  I would add a countdown to my sanity, but I don't know if that's possible (my sanity, that is).

I have plenty more to discuss, but I will save until next time.  I don't want to bore you all too much. 

Gotta love the hair!!!  Now that's hot!

Wednesday, January 26, 2011

Just saying "hi!"

I have a lot to talk about, but no energy to sit up and type.  This has been my theme a lot recently... no energy and a lot of pain.  I really wish I could switch those two. 

Since I am following the same theme tonight, I'm not saying much.  I'm hoping to have more energy tomorrow to tell you all about my fun weekend, my oldest daughter's "break-down", and the countdown.

This is definitely my shortest post; and probably will be for a long time.  That is all for now.

Hello and Goodbye.

Wednesday, January 5, 2011

Deep Thoughts, by Jack Handey (er.. Robin Jones)

I hope everyone who reads this is doing well.  I am having a bedrest day.  I need to replenish my spoons after using way too many the last few days.  After a stressful and physically demanding day yesterday, I have the energy of a slug and my body feels like someone just poured salt on me (I can only imagine how much that would hurt).  So I thought I'd use this down time to post a few thoughts.

The hubby and I will be returning to Atlanta to see Dr. Shoffner on March 1st.  That is 12 weeks from my last appointment.  He had said that the tests take about 6 to 8 weeks.  However, his first available appt was March 1st and they like to give enough time to make sure that I won't make arrangements to travel to Atlanta before my tests results are back.  I'm also sure that someone like him doesn't work much around the holidays.  I wouldn't if I made the kind of money I'm sure he makes.  We will be flying this time.  Since it's a 12 hour drive, it will cost the same for us to fly there and back within the same day that it would to drive and have to get a hotel room one or two nights, as well as the rising cost of gas (we have to fund all of that cool stuff in Dubai!).

I have taken up a new hobby.  A hobby that I would have never thought I would have in my wildest dreams.  I started cross stitching!  I know, shocking, right?  The girl who couldn't sit for 2 minutes without getting bored.  The girl who loves to run, drive motorcycles, climb mountains, and even clean house.  Anything that would require me to up moving, and sometimes moving fast.  But, I finally gave in.  I finally realized that I'm not running any marathons any time soon.  I finally realized that I have officially been on my couch for over a year now.  I finally realized that my life has changed and I need to change with it.  Even if I am kicking, screaming and dragging my feet while doing so.

So, I am comfortable that my friend will not have time to read my blog.  She just gave birth to twin boys about a week ago.  She also has a son who is a little less than 2 years old at home.  Since I am pretty sure she won't be reading this, I can tell you that I am cross stitching a present for her.  It's great because it keeps me busy while I'm lying or sitting down.  I am also a very goal oriented person.  So now I have a goal to finish my project.  I really wish, however, she could have held off on giving birth a little bit longer.  She was only 33 weeks along and I am no where near ready yet!  And you know, it's all about me!  (please note the sarcasm font)

Another one of my deep thoughts....  Men are such babies!!!  You know, women get a bad rap for being melodramatic.  However, when men get their feelings hurt, they can also be melodramatic.  Some men (not all, but most) become so childish when they get their feelings hurt or their pride injured.  Put a band-aid on your pride and move on.  What is it about men and their damn pride?  Get over yourself!  It's not all about you.  (it's about me. ;-)

" If a kid asks where rain comes from, I think a cute thing to tell him is, that God is crying, and If he asks why God is crying, I think another cute thing to tell him is, that God is crying because of something he did "- Jack Handey

More Deep Thoughts
Have a good day everyone!