My nephew and niece need your help!

I am asking you to help... I understand if you can't...

My nephew Isis and my new niece Phoenix have finally been diagnosed with Rigid Spine Muscular Dystrophy. It has taken over FIVE years to get this diagnosis. That is five years of my brother-in-law and sister-in-law worrying all the time. Having test after test done on Isis, and still not knowing what is wrong. It hasn't been easy for their family. It hasn't been easy for my family either. In many ways we are thankful that we know what they have. We are all finally done wondering. Now that we know though... we are all sad. Rigid Spine Muscular Dystrophy is not any easy disease to have.

Since Isis was 6 months old he has been fed by a feeding tube. Originally it was through his nose down to his stomach, but now he has a plug which is actually connected through his belly to his stomach. Everyday Isis sits for hours when a machine pumps food into his stomach. Tell me this... when was the last time you saw a 6 year old sit for hours to eat? How about a 1, 2, 3, 4, or 5 year old? Isis has done this his whole life. His parents taught him to read at a very early age, and so he either reads or draws to pass the time. I am attaching some drawings that Isis did, and that his mother colored for him.

Although there is no cure, there are ways to prolong life and help these children that have this disease. One is a cough assist machine that helps them cough. With Rigid Spine both my niece and nephew have very weak muscles. So weak in fact that Isis still cannot stand up by himself without having help or using furniture. He is six years old now. Phoenix cannot even sit, or does she even try to sit/crawl/scoot. We think she may be worse than her brother. The cough assist machine will will be used for both kids, and they will be hooked up in the morning to strengthen their lungs. Hopefully with this they can better fight off illness, and we can have them with us as long as possible.

My brother-in-law Nick is asking for donations for the cough assist machine. Even small donations will add up. It is not covered at all by insurance nor will he get one from the Australian government. Socialized medicine apparently doesn't think it is necessary. I guess it isn't, but will it ever help them. /sigh I am asking my friends and family to help me help them get this machine. I realize not everyone can donate, and I do not expect anyone to. I just want to give you the opportunity. Thank you friends!

Read below to find out how to donate, and to read up more about Rigid Spine. Nick has a blog and a website. The links are below. Thank you again!

From Nick... "Isis and Phoenix have a very rare disease called Rigid Spine Muscular Dystrophy. After attending a really great Muscular Dystrophy conference we discovered a machine that will help Isis and Phoenix to fight of Chest infections in the years to come. It is called the Cough Assist...

Attached is a flyer we are spreading around, because we are trying to get enough money for the machine which is $10,000 US.

If you can help us in any way please read the flyer, or visit the HERO: The Isis Barfuss Cough Assist Campaign website Nick built to find out how you can help. http://www.nickbarfuss.com/hero

Even if you can't (which is totally fine, please don't feel like you have to!) check out the following websites to find out more about Isis and Phoenix and their condition!

http://www.nickbarfuss.com/hero

A site created by Nick to help raise awareness about the importance the Cough Assist Machine for Isis and Phoenix.

http://rigidspine.blogspot.com/

**edit by jess**
dear friends and readers in the blogosphere...please help us by linking to either this page or directly to the websites nick has created (links above). we really want to get the word out here and raise awareness as much as we can... got any ideas? send them to us by email (bestmonkeyfriends AT yahoo DOT com) or leave a comment on this post. xoxo

on feeling like ten miles of camel ass...

something is wrong with me. i don't know what it is, but according to webmd, it could be practically anything. diverticulitis, heartburn, panic attack, colon cancer and my personal favorite: aortic dissection. i have a hunch it's either kidney stones or gall stones.

the first "attack" was friday night. i had a backache, but just ignored it and when to bed. paul got home from work around 4 a.m. and i was in SO much pain. he gave me some medicine and rubbed my back and i went back to sleep. i woke up feeling crappy and my sore back lingered all day saturday. i pass it off on getting old...

saturday night, we sit down to watch "casino royale." sorry bridge, but this is NOT a good james bond movie!!! daniel craig is a FAB bond, FAB, but this movie....eh. not so fab. i can't wait to see more of him in a different bond movie. anyway, i digress. i couldn't really get comfy for the whole movie, and about halfway through the movie, my stomach starts hurting like hell, right? and i think it's heartburn. only it's bad. so i drink some maalox, right? well that didn't even touch it, even though i drank enough maalox to plug up a cow with e coli. or something like that.

anyway. sick.

the pain gets worse and worse until it's so bad i am crying. paul asks me where it hurts (he had surgery for kidney stones last fall) and i tell him and he says he thinks i have kidney stones. the last time i felt pain like this ... i was in labor! i thought i was going to die. he asks me what he can do and i tell him to make it stop. of course, he says he can't...and i start to laugh. i say to him, "now you know what i felt like! watching you roll around in so much pain!" he agreed he felt helpless. he had some prescription painkillers left from his surgery, so he gave me one and i zonked out within 10 minutes. he said we could go to the emergency room if i wanted to, but i didn't. first of all, i don't want to pay that emergency room copay and second i don't like hospitals.

so i wake up this morning feeling all blah. BLAH. my back kills. mostly in the center, but tonight it's settled in under my right shoulder blade. i am afraid this pain is going to return.

i am calling the doctor tomorrow. i don't want to, but i will.

Kids grow up...

My son is suddenly growing up fast. He is 7, and really starting to understand how the world works. Today I got all sad when I realized that at the end of this month he was conceived 8 years ago. An accident... yes. A ONE TIME accident I should specify. He can be a handful sometimes, but man do I love him.

I really should tell you why my son is growing up. I had two funny stories about him just today.

FUNNY STORY 1: This afternoon when I went to the doctor.

I have been sick for quite some time. Cold... Flu... Pneumonia... Bronchitis... I really had no clue. I just haven't got better. We are going on three weeks here dammit! So I woke up today feeling really crappy. /cough /cough. I walked up a flight of steps and I could not breath. I decide to go to the doctor.

My kids haven't even realized I have been sick for three weeks. One of the reasons I am not better yet I was told by the doctor. Figures.

In the waiting room the receptionist gives me a mask. My kids look worried.

We go into the exam room. While waiting my son starts asking me if I am going to be okay. I assured him I would be fine. /cough /cough. Then he is quiet for a few minutes. Next thing I know he states, "We will eat cereal, Eggo waffles, and popcorn mom. I'll cook it for us."

See these are all things I let him cook. He honestly was worried about this. His mom was sooooo sick she actually went to the doctor. W who was going to feed him? He obviously forgot about his father whom was coming home in a few hours.

I almost laughed, and then I almost cried. How sweet was that? My son taking care of me. Made me love him all the more.

FUNNY STORY 2: I get out of a bath.

So now my husband is home from snowboarding. He takes a hot bath and I feel like joining him. Being all sick a nice HOT bath sounds great. I should mention that my bathtub is really big.

Anyways, we sit and chat for awhile and then he gets out to go make dinner. After a bit I get out too. I put a towel around me when my husband yells something to me so I go to ask him what he said.

My son sees me in a towel.

He looks straight at my husband and starts laughing and says, "You guys were having sex." You know... in that sing song way kids make fun of other kids? I honestly almost lost it. My son still thinks that sex is laying in bed next to each other and then kissing. Close... but he really isn't the age to actually tell him what it REALLY is. /whew

Now it doesn't help that my husband starts laughing and says, "Um, no were were not." It then took a minute to convince my son that NO we were not having sex. For two seconds I felt like a teenager that was caught by my parents. It was my son... and I was innocent dang it!

So there you go. I am starting to feel old. Then the fact that my bday is coming up. I am still sick and am supposed to really rest. Doctors orders. No running and passing out. Rest. At least he gave me some really good cough syrup that puts you to sleep. /smile

I am soooo not a winner this month.

I should have used Mucinex DM... oh, and an announcement

I am sick.

Sick.
Sick.
Sick!

The type of sick when you wonder if it is changing to Bronchitis or pneumonia.

Sick enough that I really want to just go to bed. Too bad I need to work, watch kids, do laundry, clean the house, and go grocery shopping. Too bad for me.

I have been using NyQuil PM at night. Lovely. I use the DayQuil during the day. Not as lovely. I really should be using the Mucinex DM.

***********ANNOUNCEMENT*************

In June I'll be participating in a 5K run. This is in thank to my friend Chelle which asked for this "present" for her bday. I am going to try to run all of it. Currently I can run for about 5 minutes before I die. I've been training for about 3 weeks. If I run for two minutes at a time I can actually run around 12 minutes.

Yesterday I almost passed out. Honest. I tried to run while I am this sick. I was running and next thing I know I have the spins. I hate the spins. When sick... when drunk... I really hate the spins.

So... to make a longer than necessary story short.

• I am slowly increasing my running.
• I am trying to watch what I eat.
• I am trying not to make an ass out of myself by falling off the back of the treadmill.
• I am trying to lose weight.
• I am again... trying not to make an ass out of myself.

If anyone has any good suggestions for running songs I would love to hear them. I need to get some new music on my player.

Here is a song I should probably get...

Eye of the Tiger

Risin' up, back on the street

Did my time, took my chances

Went the distance, now I'm back on my feet

Just a man and his will to survive

So many times, it happens too fast

You change your passion for glory

Don't lose your grip on the dreams of the past

You must fight just to keep them alive

Chorus:

It's the eye of the tiger, it's the cream of the fight

Risin' up to the challenge of our rival

And the last known survivor stalks his prey in the night

And he's watchin' us all in the eye of the tiger

Face to face, out in the heat

Hangin' tough, stayin' hungry

They stack the odds 'til we take to the street

For we kill with the skill to survive chorus

Risin' up, straight to the top

Have the guts, got the glory

Went the distance, now I'm not gonna stop

Just a man and his will to survive

tales from the mucinex dm

this stuff really works.

for 18 bucks a bottle, i guess it had better. snot quotas for march have been met. on february 28.

yes, i have been told i am an overachiever. i even prove it in sickness.

i hope your life is great. not only are my sinuses and throat deeply unhappy, i am suffering from a case of the fuckits. the outlook is grim, but i expect a full recovery on the weekend after i have a beer or two.

next week: a road trip to ass, montana. i am sure i will have delicious details to share with you. it'll be me, a pack of camels and justin timberlake for a 5 hour drive. i'll be bringin' sexyback!

xoxo (really i'm sick of it all)

edit **i am tempted to delete this entire post, but have not in the interest of full disclosure. i sure as hell don't want you thinking my entire life is roses and sunshine. nope...i am just like you.**