Saturday, September 10, 2011
Blog Carnival: Chronic Illness and the Flying Spaghetti Monster
Bitch, where haven't I been?
Paris. That's where I haven't been.
In my room, sitting on my ass watching cat videos? Maybe. You'll just never know, will you?
Today's post is part of the September Chronic Babe Blog Carnival and it asks:
Let's hear how your faith—or lack of, or explorations—have affected your life with chronic illness. Have you found support in a spiritual community? Found a like-minded support group? Received criticism from people of faith? Converted from one belief system to another? Let's hear about it! And let's get that conversation rolling.
This is a touchy subject for many people, and while I have no issues giving my opinion, I want people to remain calm and realize it is just that: my opinion through my experiences.
I'm going to back-pedal now.
When I was young, my parents were pretty regular about raising my brother and I in the Episcopalian Church. Our church in Pennsylvania was especially easy going and friendly, which made Sundays less of an ordeal as it was for some kids.
However, I never felt a connection to Jesus and all of his homeboys. The stories Sunday school teachers told were merely that - stories. And not very entertaining ones, either, because they all featured men and had not a single kick-ass woman like She-ra. I only dug Noah's story because of the animals and the bitchin rainbow at the end.
It was the people - more specifically the priest - at my church in Gulph Mills that I liked and respected because anytime I was in the hospital he would visit me and call me "tiger" whenever he saw me. This guy was awesome-sauce. However, my interest in religion was just never there and I was determined to be indifferent.
Remaining indifferent to religion became more difficult as the more I learned about them, the more disenchanted I became. The hypocrisy, the crimes against humanity and the Earth itself - all of it left a sour taste in my mouth. Feelings of exclusivity, superiority, encouraging war with and shunning people whose ideas/beliefs do not match your own - no, thanks. I'll have none of that.
There is no way I can take any comfort from any of this, especially when I am ill.
Yet, despite my wholly disapproval of organized religion and mankind's idiotic marketing campaigns against one another, I am not an atheist. Atheism depresses the ever-living crap out of me and I'd never be able to not believe in something.
Believe it or not, I am a spiritual person. I do believe there is something bigger than me out there and I have accepted my own ignorance on the details as par for the course. It's OK to not know everything, to not have all of the answers the universe possesses.
I'm not sure if my congenital heart defect is part of A Big Plan for me - I am definitely open to the idea, but I am not going to place any money on it. Maybe it was designed thus, maybe it was just a shitty draw of cards. I don't dwell on it, though, because I have better things to do with my life - like watching Doctor Who and collecting Monster High dolls.
As for like-minded people to receive support from, well, I'm not posting any online advertisements anytime soon. I enjoy deep conversation on the metaphysical with people I know and respect, but when it comes time for the next surgery, the only support I want is from my loved ones.
I accept that people take great comfort in leaving it up to God when it comes to their health, or relying on a God Knows Best philosophy to see them through tough times. If that's what gets someone through their day, so be it. I just don't subscribe to it nor appreciate the sentiment aimed in my direction.
I have yet to receive criticism from people of faith (but I look forward to your letters after this post /sarcasm) but I also don't go asking for trouble. I am a firm believer in Agree to Disagree/to each their own and not go get up in somebody's personal space to force my views on them - be it on their doorstep, in public, or a comment on their blog.
Friday, April 22, 2011
Bart No Like. Bad Medicine.
Currently I take 4 pills upon waking, 2 vitamins after I eat breakfast, iron at midday/afternoon, 5.5 pills at night followed by another iron pill. It may seem like a lot to swallow (ha ha - that's what she said) but some of those are doubles or a different dose of the same medication. In actuality, I only take 7 different kinds of medication. Five are related to my heart, one to my thyroid and the other none of your damn business. ;)
The only type of medication that has ever proven to be difficult are the medications I take to control my arrhythmia. I won't state which medications that I was taking because everyone's reaction to them is going to be unique and I do not want to scare anyone who may be taking either of these meds or know someone who is. It all has to do with my unique chemistry, not the pills alone. It's like being allergic to peanuts. Peanuts might be DEATH to one person but delicious toppings to an ice cream sundae for someone else.
Most of the pills I take (minus 4)
Bad Medicine: The First Encounter
When I was nine years old, I was put on a particular medication for my recently developed arrhythmia. Gradually, I developed myalgia, confusion, drug-induced lupus and nightmares. Oh, my ticker was doing the best it had ever done up to that point in my life - healthy, strong, responsive! - but I was in constant physical pain and having my first experience with extreme brain fog. The climax came when my mother found me going off to school well before it was time. I stepped outside, backpack on...walked down the path to the sidewalk. Turned towards the end of the street. Walked about two houses down. GOT LOST AND CONFUSED. Like a child walking through the woods. God, THE PANIC!
I forgot where I was going, why I was going there, what I was doing, how did I get there? It was just a jumble of foggy anxiety. Really, the fog in my brain was just so dense it was any wonder I was able to make it back to my house, knock on the door and tell my mom I didn't feel good. It took a little over a week in the hospital to ween me off and get everything under control.
Bad Medicine: Even Badder
Doctors went for another medication when I was in junior high. This time, everyone got a little smarter and removed me from school (removed/kicked out, it's all relative). Man, oh man...what a roller coaster of batshit crazy that was. I developed psychosis immediately. Paranoia, hallucinations, violent mood swings, seething anger, intense mania...oh, the mania! As ridiculous as it sounds, I almost miss the mania. Almost. I was extraordinarily productive during this time, creatively wise. I ate/slept/drank my writing, stayed up to all hours of the night just writing and writing and writing - all by hand. I had containers filled with complete novels (mostly dribble, but the rough drafts of future projects as well). I painted, sculpted, and drew. Despite this, there is no question now in my mind that I was insane.
Unfortunately, my mom couldn't figure out if my extreme behavior was due to me just being an angst-ridden teenager or if it was the meds. So I was like this for a number of months, constantly flying off the handle, smashing anything I could get my hands on in a temper tantrum that could rival any toddler. No fun.
Mom finally came to the conclusion that I wasn't right in the head and by the second half of my 8th grade year I was off the medication. The side-effects gradually tapered off, but as I was never given assistance for the repercussions of going through such an experience, it would not be until I reached adulthood that I realized half of what I experienced during my junior high years was more than likely the result of my medication.
I've never publicly written about this, though I did tell a select few about it a couple of years ago, when I was reflecting on it for the first time since reaching adulthood. It's been a little nerve-wrecking allowing everyone to know this information and get a glimpse of what once went through my brain. I feel that this blog carnival is the perfect opportunity to go public about my experience, even if people will take a step back from me. I have yet to bring myself to read the journals I kept during that time. I know they're filled with ramblings about people that never existed.
Luckily, this story has a hopeful ending. When I was sixteen years old it was decided I need to give another medication another go. I was understandably scared, but I also appreciated the fact that my new doctors were taking this seriously enough to quarantine me at the hospital and observe me for heinous side-effects. At the end of my sophomore year I went in the hospital for a week, armed with a care package from friends I'd met on the internet, filled with a wondrous new music that would stay with me forever. My body - and my brain - took to this medication beautifully and I have been on it ever since.
A treat indeed, given all of the tricks I had to go through to finally get to it!
NOTE: High five for everyone that recognized the Bart Simpson quote.
images one and three from We Heart It
A Cardiac Crisis and the Monster Mash
Well, a crisis has to be handled on a situation by situation basis. There are two major crisis that come to mind in my life and I believe I already wrote on one, so I'll talk about the other, more recent crisis I had.
The worst situation, in my head, was to have a major episode of tachycardia around my friends. Though I am not embarrassed by my health and I am happy to talk about it anytime, I knew I would be just mortified if anything occurred while my friends were around. I think it was the idea of appearing weak and sick around my friends that scared me most. I like being the loud-mouthed funny one; not the sickly mousy girl.
So, back up to October of 2007. I decided to throw a Halloween party for my girlfriends. Not just a simple dinner and scary movies party, either. Oh, no. I went ALL out ~ glowsticks, homemade and store-bought decorations, a YouTube channel to loop videos of Halloween cartoons from our youth, a ShoutCAST radio station to play retro spooky tunes as we ate spaghetti topped with my signature homemade spaghetti sauce. I had a variety of movies on hand, ranging on the fright meter from so bad it's scary to mildly gross to downright nightmare-worthy. I even created a few spooktacular games including a horror movie version of WHO AM I? and a full fledged Halloween theme JEOPARDY! complete with final Jeopardy question and prizes.
It was a crowning achievement in my parties, and I was extra pleased that nearly all of my guests were able to come. As we are getting older, lives are changes, careers are blossoming and it's becoming more and more difficult to get together.
Earlier that day I felt a little palpitation at work. No worries; I popped my back-up pill and alerted my supervisor just in case it turned into something bigger. Fortunately, it didn't...while I was at work, anyway!
That evening, my party was in full spooky swing - we had played one game, watched the Garfield Halloween special and were sitting around the dining room table enjoy dinner with Halloween-y tunes in the background when all of a sudden--! WHAM! My heart takes off like a bat out of hell, going into full-blown tachycardia. Remaining calm and quiet about it, I do not let on what's going on. I drink copious amounts of water and take deep breaths, then slowly get up and take my evening pills. Nothing. My heart doesn't even slow down or pause.
I excused myself and go visit my mother in her room, collapsing on her bed and confessing what has been going on. I want to keep it a secret if I could, try and get my heart down on its own. My mom tries to listen and record it with her stethoscope but it was going too fast.
She goes to get another emergency pill I use for rapid heart rate - trying not to meet the eyes of my friends in case they ask where I wandered off to. She gives me the pill, but I am suddenly nauseous and...well, I get sick. Sicker than I've ever been. I have never, ever, once upchucked during a tachycardia episode. This does not bode well. It was time to call it quits, throw in my towel and get my ass to the ER.
PROTIP: If you're going to the hospital, shave your arms! You will thank me when the hospital tape doesn't hurt as much.
I tried to crack jokes for my friends, but they were clearly freaked. I was pale, sickly and probably a little blue around my eyes and lips. Perfect look for a Halloween party, but not under these circumstances!
I apologized profusely, lamenting about my ruined decorations, games, prizes, etc. but my friends were of course more concerned about me than getting to dessert and Jeopardy.
They gathered their things and left, and my mom and I left. In front of my friends, I remained collected, calm and even jokey. As soon as they were out of sight, though, and I was in the backseat of my mom's Toyota, I was crying, stressed and utterly freaked out.
This was one out of two situations where I honestly thought to myself, Oh my god, this it. This is freakin' it. It's all over, age 25. Well, at least I traveled...
So it's 40 minutes of these kind of thoughts that I am trying NOT to have. Now, you may be thinking OMG WHY WOULD YOU DRIVE SO FAR? Frankly, I don't trust my local hospitals, especially in an emergency. They're not specialty hospitals, they don't know how to handle me and they've already proven to be incompetent twice over by this point.
It was the actual act of being physically ill that made kept my internal panic button flashing, but I did my best to not think this was curtains for me. When I was finally at the ER and surrounded by doctors that I knew, however, I felt better and was able to calm down. I trust TEAM RACHAEL! and TR! affiliates like Dr. Catwoman with my life. These are the people I knew would save me and make it better. As much grief as I give them, it's moments like these that make them worth every single pill they prescribe, blood test they order and obnoxious stress test they administer.
How did that night end? Well, I'm here, aren't I? They knocked me out and decided to electrically cardiovert me (that's when they get out the paddles and yell, "CLEAR!" on TV) which shocked my heart back into submission. I woke up immediately afterward, feeling surprisingly rested (amazing what 100-400 watts of electricity can do for the body, huh?) and asked how long I'd been knocked out. 30 seconds!
Thank goodness, they found the source for my tachycardia: hypothyroid (crazy what that little sucker thyroid gland can control!) and while I've had a couple of arrhythmia issues here and there, I have, thankfully, not been to the UCLA emergency room since October of 2007.
So, long story short: How do I handle a crisis? Get my butt to TEAM RACHAEL!, stat!
How I deal with the medical establishment
Annie blogged about health care; I don't think I am emotionally or psychologically prepared to talk about health care right now. Going through what I went through to obtain health care, what I go through to maintain it, and what I sacrifice in my life to keep it has made me develop some severe anxiety. So not ready to blog about that. Instead, I'll give my profound and sage advice on dealing with New Doctors, Baby Doctors and Hospital Stays.
credit
HOW I DEAL WITH...
New Doctors
Throughout my life thus far I have had eight (including my current) cardiologists. I've always had a chip on my shoulder in regards to meeting new doctors; my bravado is what I use to size up the new white coat in my life and I see who will take my crap, who won't and who will dish it back at me.
This is an attitude I have carefully cultivated over the course of my life because it is the only way I can push the fear aside and let things be all right. My humor is my shield against the cruel realities of my health and I use it generously because the alternative is to hide under the covers and cry. That is not a long-term answer. Being a borderline ass is something we can all deal with, though.
Remember: Like many a-thing in the wild, doctors are more scared of you than you are of them. Look them in the eye, give them a firm shake of your hand and be vocal, open and honest about absolutely everything in your life, regardless if it pertains to your health or not. They need to sniff you out and realize you are a creature to be respected as well!
Baby Doctors
The only people who I never mouthed off to as a kid were the student doctors - those pesky little shits who, without a friendly "Hi, how are you today, little girl whose name I can't bother to remember? Do you mind if I listen to your heart?", would just come at me with their cold stethoscope and have a go at listening to my unique heart.
These people needed a slap of respectable bedside manner lessons and by the time I reached my late teens, I wasn't having it anymore. If any of them came at me with so much as a flashlight I held up my hand and made them introduce themselves to me, shake my hand and ask my permission to manhandle me. Then we'll get along real nice. :)
Hospital Stays
- Label everything you own and send what you can home. Tie a string around your wrist and the drawer you keep your belongings in so if some snoopy prick decides to rummage through your goods you can catch them in the act (I once had a pair of PJs and a book about the Poky Little Puppy stolen. I am still bitter about it twenty years later)
- As soon as you are admitted, demand to see a menu for the next day's meals and fill it out as soon as possible. TRUST ME; you're going to get the left overs of a hard boiled egg, prune juice and stale, dry wheat toast otherwise.
- Always go for the green Jell-O
- Never be afraid to just say NO to student nurses who want to try and take your blood.
- Always ask if the Super Nintendo or whatever game system they have lying around can be wheeled in to your room and hooked up.
- Always bring the essentials from home: Toothbrush, toothpaste, deodorant, hair ties and hair brush. You will feel less gross.
- If you're too cold, ask to have a heated blanket...or three.
- If your room has a dry erase board, leave little messages of appreciation to your nurse. Buttering her up can have massive bonus points, especially when your fighting your roommate for control of the TV.
- Always take a souvenir to remind you of your stay. Here's mine from last year's heart catheter:
This is how I deal with the medical establishment; with irreverence and petty larceny.