Thursday, September 2, 2010

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.

Monday, August 9, 2010

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.