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Tuesday, November 24, 2009
We thought we were off to a good morning. It started out normal, I woke up to Mr. DinDin Duree on my lap and Jason snoring next to me. I threw my gimp arm at his chest and repeatedly yelled, “Babe!” until he got up. He went out for his three C’s: coffee, cigarette, and cereal, with Mr. DinDin Duree following behind. Upon his return nature was calling and I had to release the morning fluids. Now we have a code for the different levels of urine urgency. DEFCON one through five. We never use one or two so we don’t quite know their level of urgency. Three is I have to pee, four is move now or there will be a mess, and 5 is sweet release. So this morning was unlike any other morning where I was in bed at a level three and when I was upright in a chair gravity put me at a four point five. I started my way to the hallway, when suddenly I felt DEFCON five and the floodgates had opened. It was Niagara falls down my thigh, over my calf support, the golden river flowed over my foot rest and into a steaming pool of pee. Jason yelled for me down the hallway, “You comin‘?” I waited a few seconds before breaking the news that it was too late. He let out a huge, “Really!?” upon entering the bedroom and proceeded to lecture me on the importance of peeing on the big girl potty. With a bottle of rug doctor in his left hand and a Shamwow in his right, he knelt down to clean the soaked up carpet. He carefully rolled up orange synthetic shammy, just like the dude did with the two liter of cola in the infomercial. Suddenly he felt a squishy substance under his foot. Sometime during the night DinDin had left a little nugget of his own. The worst part… after all was said and done… I was back in my bed so fresh and so clean… Jason’s Flintstone foot met an additional pile of poopoo under his desk.
Monday, November 9, 2009
So for the past few weeks a hot topic of discussion has been what changes will we be making or what equipment will I be buying to make life easier in terms of bathing. When one has the ALS options are a bathroom remodel, a mechanical lift system, a hosing off in the back yard, a sponge bath, or get in touch with my inner hippie and stink. My dad likes the idea of a Costco pack of sponges because he’s cheap. Both a remodel and a lift system cost thousands of dollars, and a hosing would be a bit too cold. And of course being the princess that I am, and I am sure every woman would agree, that a sponge bath is not efficient enough because it is so important to get all of the female nooks and crannies clean. One stinky evening my mother and Jason were staring at the bathtub, shower, and three pieces of loaned shower equipment trying to MacGyver a new way to shower me. We had broke the mechanical chair used for the old method. Instead of discussing this prior to getting me undressed, Jay picked me up like a sack of potatoes as my mom stripped me nakie, an ALS term for naked. There I was bare boobed and cold while they carried on their bathing conversation. And like a two year old, who you should never turn your back to at bath time, I took off running, into the other room (well, more like rolling since my legs don’t work.) I put my chair into second gear and peeled out into the hallway with Mr. Din Din Duree, our four pound yorkie, running along side me. Ever since I moved home with the ALS Din Din has found my lap to be a most convenient napping place. So he goes where his lap goes. I passed by my dad’s home office yelling at the top of my “ALSed” out lungs, “Wheelchair streaking!” Then it was full speed into the kitchen where my younger sister Nicole was doing homework on the island. I repeated my new phrase nice and loud, “Wheelchair streaking!”. Looking back at Nicole as I rounded the kitchen table, I saw her jaw hit the floor and the white around her eyes expand. I headed back to the bathroom and on my way I peeked into my dad’s office. Realizing whoever he was speaking with on the phone, had shared in the joy of my ALS infected shrieking. I was quickly reacquainted with an aggravated mom and a frustrated Jason. They were just introduced to my hysterical laughter and my crying eyes. Please remember I am a very modest person, but ever since I was infected with the ALS, I had to quickly throw all modesty out the window. The ALS strips you of all reservations you have of your naked self. A streaker is funny, but a handicapped one is hilarious. Next time they’ll think twice about being unprepared for bath time.
Thursday, October 22, 2009
With the ALS one of the many luxuries you kiss good-bye is being able to wipe your own ass. Now, I have spoken too many of my PALS with ALS about their first “Operation Tush Cleaning” and they described it as embarrassing, humiliating, and saddening experience, because they lost one more bit of independence. I was so not looking forward to my first “Operation Tush Cleaning”. Before I describe my first ass-wiping, I want to tell you about the list. When I was first diagnosed almost a year ago I knew “Operation Tush Cleaning” was in my future and I wanted to make sure every nut job care taker did not have full access to my beloved booty. So, I told my mom that I had a small very prestigious list of persons allowed to perform the tasks involved in “Operation Tush Cleaning”, called the butt wiping list. I didn’t realize how honored people would be to have their name on this list until I told my aunt Mary her name was on it and she expressed her utmost gratitude. One of the crappy things about the ALS is it gives your bowels a mind of their own. Sometimes things move with ease and sometimes you are doing lamaze breathing while you struggle to drop some kids off. Sometimes when the turtle head is poking out and you are using all your might to keep it in its shell, it creates a little nugget of love. When I visited Southern California I was hanging out at my boyfriend’s house in Fullerton, watching the fish sticks episode of Southpark while Jason was outside decorating for his sister’s, my bestie’s, 30th birthday bash. Then it happened. I felt a rumble in my gut and before I knew it, I was holding on for dear life. I needed to take the Browns to the super bowl and Jason was not in yelling distance. I clenched and squirmed, my face turned shades of blue and purple, when my ALS weakened butt couldn’t contain the turtle and I birthed my first nugget. Ahh! 25 years old and I made a dookoo in my pants. When Jason finally made his way into the house I explained our circumstance with shame and he carried me to the bathroom. Once I was positioned on the pot and Jason handed me the TP, I had a problem. Now believe it or not the embarrassing part was not telling my boyfriend I made a little nugget , but I no longer had the luxury of cleaning my own butt mess. He needed to perform my first “Operation Tush Cleaning”. To lighten up the mood and being the jokester that I am, while he was performing a task no boyfriend should ever have to do, I asked, “Is it like a little Hershey Kiss?” (I know... gross, but we were in a kinda gross situation). And without skipping a beat or turning in disgust he responded, “Nope it’s more like a melted Snickers bar.” All embarrassment was flushed down the toilet as I let out a giggle and knew that was why he was number one on my butt wiping list. It takes a real man to wipe their girlfriend’s ass.
Tuesday, October 20, 2009
When the als started in my left foot, I was quickly referred to as the gimp. All was Okay as I embraced my new nickname. It wasn’t until November twelfth of that the new jovial name endured a whole new meaning. That was the day a doctor I had just met confirmed what I had thought over many restless nights, I had the ALS. Now when I say "the als" don't pronounce it A L S , but as one word als. Like the name Al, but with a zzz at the end. Now knowing that I am going to die in the near future from this crappy disease, there are many things I want people ask me regarding my eminent death, things I myself would be curious to ask someone with the ALS. I think people are either too shy or don't want to hear about the ailments of dying. I have wanted to journal my experience, but did not want to waste the time doing so until l was pretty confined to my computer, and that time is here. I thought what better way to share my thoughts, but with the abyss of the world wide web. My mom told me to write letters or make videos to help my loved ones with the grieving process, but I don't want to associate my death with sadness and misery. So here is my blog documenting all the information I feel is pertinent for people to know about me. Every day of my life is an adventure as I am rapidly becoming more and more disabled. And at the same time freed of responsibility.