Epic ER Fights- part one

The first time I caught pneumonia it was not so funny, I felt so ill I wanted to die, literally. I felt my life sucked right out of me. After a week in the ICU mom insisted I take a soak in the tub. After my washdown with cucumber scented froo froo body wash, I looked up at her with pure exhaustion in my eyes and mouthed, "I'm done." "You want to be taken off your vent?" she asked. "Yes." I silently replied. I was flooded with guilt because I would die between her birthday and mother's day and that was really an inconvenient time to go. What's really hard about being on a breathing box, AKA ventilator, is I have to make the choice on when to die much like choosing when to kill myself bringing on a world of guilt. Four days later I chose to stop the process and keep on truckin. I need to choose a more convenient month to pull the plug, like March.

The second time I got pneumonia it was way better. It was a tuesday, I was feeling lousy and my lungs were thick with sludge making difficult to breathe. By about four in the afternoon I felt something was seriously wrong. At that that time Jason came at me with our trusty thermometer, shoved it into my mouth, and he confirmed what I already knew. "100.3 congrats you're at triple digits," he exlaimed. Shit pneumonia, did I really want to go through this again? Last time I wanted to die. I took a shot of morphine and talked it over with my mom. "You can try kicking it with oral antibiotics or go to the emergency room," she said while pushing a dose of levequin and Lord knows what else, down my feeding tube. I knew if I didn't get IV antibiotics I would be in a world of hurt and eventually have to go to the hospital, if not to get better then to be taken off my breathing box and die. This time however, I knew what to expect and I would be prepared. Jason dressed me in my always looking sexy hospital gown, slapped on a fresh pair of sexy panties, and wheeled me out to the front door ready for the steamy Fairfield fire department. I was looking like one hot tamale.

When I arrived at the emergency room, to my surprise, the staff remembered me! Of course why wouldn't they, I simply have an unforgettable face. I didn't recognize any of them. Maybe because last time I was happy on valium and in my mind I was tanning on a warm beach in Hawaii. I was placed in a fridged ER room built for two, separated only by a pale blue curtain with no auditory privacy. Nurses waltzed in attatching EKG wires and recording vital signs, while the respiratory therapist was fine tuning the hospital's ventilator he switched to. They were all like a buzzing swarm of insects taking turns landing on my pile of giant poop. Immediately the impossible search began... the search for a vein. Most of you may already know that your muscles push your veins against your skin, that is why juiced up athletes have such huge veins and tiny testi... ummm... hands. When you have the ALS, like myself, your veins titanically sink into your arms. One nurse compared it to looking down onto a miniature freeway trying to stop a car with your finger and the entire time your blindfolded. So when the buzzing nurses began hunting my limbs for a good blood gusher, none popped out leaving them no option but to dig with a needle hoping to stab a vein. Oooouch! Why didn't I feel this much torturous pain during the last round of pneumonia? Oh yeah, drugs and Hawaii. More morphine please! After poking my arms and feet for well over thirty minutes the doctor came in and took a look around my piche area. "We could try your groin," he stated like it was not a big deal. My evelids separated wide and my eyeballs grew white as I mouthed out, "No way!" while in the back of my mind I knew what procedure was coming next.

A second doctor strolled in with an ultrasound sound machine and a needle, guess what he was going for... my jugular, IN MY NECK! "Lay still," he instructs, I internally giggle. Pfft, as if I could move. And after he had his turn digging around searching for the damn vein, he had no success. I felt like a human pin cushion. Then the big guns were called in. In walks this sinister looking man carrying a huge case, which I knew was full torture devices, and wearing a shirt saying something along the lines of "infusion victory" translated he would get that IV in! I was hopeful and after poking a few nerves that were inconveniently in the way, he came out victorious. Mr. Victory inserted a PIC line which is a tube going from my non-existent bicep to the top of my heart, through my vein or artery, I don't know which one. I had one put in during the last round of pneumonia, but again I don't I remember I was in Hawaii. Finally, no more needles and in poured the antibiotics.

Then came the fight.

ALS Chops for Everyone

Like a new mommy cuts her hair short the same goes for a lady PALS. I call it the ALS chop. Why? Well like a new mommy who can't fix her hair because of kids, a lady PALS just can't fix her hair. Her arms are infected with the ALS . Prior to the ALS chop my beloved Jason would feed me my delicious supper of Top Ramen, it took him six months to perfect my recipe. I know you are saying to yourself it is only ramen, but it tastes so much better my way. Back to supper, with every fork full of delicious noodles I got a few hairs as a garnish. My long locks were always in my face . When it was grooming time I hated how my hair was styled and would throw what I called a diva fit. I quickly learned to give up mirrors because I would cry out of vanity every time I looked at myself . I hated not looking put together. If you knew me as a five-year old with hair down to my great Mishork butt (yes it is still great just ask Jason he wipes it on a daily basis ), I hated having my hair brushed. Twenty years later I cringe when my mom comes at me, brush in hand. When your head is always against a pillow or a wheelchair head rest your hair mats up like Amy Winhouse making it impossible to brush. So to avoid anymore suffering February 15, 2010 the ALS chop was performed. I am so lucky to have re-united (and it feels so good ) with my junior high BFF Megan. Oops sorry it is now Maygin. She visits me every month for a weekend of beauty. She cuts and colors the ALS chop. She also does my nails. Because I don't use my hands my nails are long and beautiful. The one time i let my mom cut them she nicked my skin and I could not pull away or yell at her. When it came time for Megan, I mean Maygin to manicure me i was so nervous it took two zantacs and a shot of morphine before I could let her cut. It is now August and I have not seen her since June thanks thanks to pneumonia so I am sporting talons. Maygin I need you or else my mom's going to come after me. I love my junior high bff. Even though we have not spoken in such a long time it was like " yesterday " when she visited me. The best part is she reads my lips better than anyone so I can have a conversation with someone. I had not had that luxury in a longtime. My brother was getting pissed because he thought we were gossiping about him. When I still had my voice Megan, SORRY Maygin was one of the last people to hear it.

ALS does...

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The Three C's: coffee, cigarette, crap

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.

Successful Streaking

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.

A Snickers Story

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.

The Birth of Gimp Girl

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.