My Monster Transformation: The Top 10 Ways My Medical Conditions and Treatments are Warping Me Into a Halloween Mutant from the Dark Side

As we draw closer to the bone-chilling date, October 31st, and its fearsome implications, I find myself pondering the similarities between myself and the haunting creatures of that eve.  My medical conditions, treatments, and resulting side-effects can be blamed for many of these gruesome aspects, but for at least one night this month, I can embrace them as awesome.  Here are the top 10 ways I see myself being transformed into a monster by my chronic illness:

10. My teeth have become strong enough to break bone.

Sparkly Vampire Lips and Teeth Of course, those bones are my own, and…they’re actually my teeth, so I’m not sure if you could exactly call them “strong.”  The cause behind my teeth snapping ability is three-fold.  My teeth are slightly misaligned,  I don’t absorb enough Calcium or Vitamin D (due to a malfunctioning digestive system), and I clench my teeth throughout the day (probably a stress response).  This all adds up to breaking the tops of my teeth and exposing the roots.

After getting a couple of these broken teeth fixed, I stopped into the grocery store for a few items.  Being friendly, I smiled at the people and families I passed, receiving some strange looks in return.  As my entire mouth and tongue were numb, I assumed my smile was lopsided and continued on with my shopping adventure.  I was glad to see I was nearing the end of my list as the Novocain started wearing off and the pain began setting in.  I picked up my pace a bit, anxious to get home before my mouth completely regained feeling.  Selecting one of my final items, my tongue resumed its ability to feel, and consequently its ability to taste.  And what did I taste?  Blood.  And a rather decent amount of it.  Flashing back to the odd reactions I had been receiving around the store, including the mother and child who essentially ran from me, I suddenly realized that it was not solely my lopsided smile that was turning heads…away.  It probably had much more to do with the fact that I had two teeth on the top of my mouth, one on each side, that were literally dripping blood like a vampire.  Sure wish the dentist had mentioned that possibility before I left the office.  Oh well, if there’s a month to be dripping blood inside of a lopsided smile, this would be it!

9. My hair has new and unusual growth patterns.

Werewolf Much like Scott Howard (Michael J. Fox‘s character in Teen Wolf) transforming into a werewolf for the first time, undergoing autoimmune therapies leaves me discovering all new forms of hair.  When I was on high dose prednisone, I grew a beard and mustache.  And let me tell you, I rocked that facial hair.  Ok, perhaps with my mother’s help I eventually waxed it off, but its persistence meant that I flaunted it more than I ever expected I would (which would be never).  The high dose steroids also gave me a round-moony face covered in acne.  I certainly could scare some babies, or at least myself, when I looked in the mirror.

After my total colectomy, either from the shock of the surgery to my body or because I tapered off the steroid, all of the hair on the top of my head fell out.  It initially grew back thin, stick straight, and darker than my regular hair color.  Now, as it has been returning to its lighter-thicker-wavier ways, I have developed strange red dots on my legs.  Wherever these dots are, no hair grows.  I must admit, I’m not too bothered by this development.  Whether it is a reaction to my biologic injections, an extra-intestinal manifestation of my inflammatory bowel disease, or just another strange result of my unusual body and its multiple treatments, less shaving of my legs is a bonus in my book.

8. My ghoulish digestive system cannot tolerate basic mortal foods.

Fridge with food spelling out "I want to eat you baby"I have gone through many dietary restrictions during the course of my illness.  Before I received a proper diagnosis of colitis, my doctors thought perhaps I was lactose intolerant or was suffering from IBS.  During this time period, I eliminated dairy and fried foods.  After my biopsies revealed severe IBD, and they ruled out lactose intolerance with a breath test, I was able to add scrumptious dairy back into my diet, but then had to eliminate almost anything with fiber.  Since my colon was removed, my restrictions have increased to rule-out  or at least limit foods that will cause a blockage, including nuts, corn, mushrooms, and any edibles with skins.

Likewise, my interstitial cystitis means that I must be careful of foods that will flare my bladder symptoms.  Initially I had to completely eliminate these items, which included acidic foods and drink, spices, and pretty much anything with flavor. Now that I have some medications to help prevent these flares, and Preflief to take with my meals, I can have a bit more variety, with moderation.  However, even when I’m safely within all my restrictions, I still struggle with daily pain, cramping, and nausea from my caloric consumption.  As much as I love food, in general we just don’t get along.

7. I want to drink your blood!

So, if my body rejects regular food, what does it want?  Blood naturally.  Haven’t you been watching tv or movies recently?  Have Twilight and the Vampire Diaries taught you nothing?

Due to long-term side-effects from treatments, malfunctioning organs, and a bleeding digestive tract, my Drop of blood giving a thumbs up.blood and iron counts are in the toilet, literally.  I get ferritin infusions to help with my iron, but I also crave nice bloody steaks, something that I was repulsed by in my “healthier” days.  Additionally, a few months ago my counts dropped to the point where I needed a blood transfusion.  It definitely left me wanting more.  After a couple months of even-lower energy than usual and getting winded from walking across a room, a few pints of blood was just what I needed.  More A-positive please!

6. I resemble a zombie.

Woman with Out of Order sign on her headIf you guessed I craved brains in the last point, you were very close.  However, I think and act more like a zombie than I crave their meals.  “Brain fog” is a symptom associated with many chronic diseases and autoimmune conditions.  There are many times were it really does feel like my brain is in a fog and I can’t “see” through to what I want.  A complete thought or word is often frustratingly just beyond my reach.  I have difficulty concentrating and am forgetful.  In addition, my husband would love to tell you, that I can be very clumsy.  On one of our first dates, I kept stumbling…over nothing.  He thought I was trying to be funny, but overplaying the joke a bit.  After a few more dates, he learned that I’m just a klutz.  Now he makes sure he purchases extra insurance on our electronic products and offers a steadying hand when I begin to fall for no reason.

5. I live in a House of Horrors.

Beetlejuice HouseAt any given point, there are items in my house that would be more comfortable in a horror flick or a serial-killer’s basement than in a single-family home in the suburbs.  Besides leftovers and gatorade, my refrigerator is cooling syringes full of thick-gooey medication.  There are drawers and cabinets full of gauze, specialty scissors, latex gloves, and other articles meant to care for internal body parts that are now externally located.  Pill containers and boxes are scattered throughout each room.  Suppositories and other apparatuses are waiting to make you flinch in the bathroom.  Drop by on the right day and you’ll also discover containers on ice housing 24-72 hour collections of specimens ultimately headed for the laboratory.

4. I have supernatural powers.

Black and white drawing of boy with x-ray glassesI am still learning to hone these skills, as currently I can only wield them during the grips of a migraine.  But, when a demon is possessing my head, I also demonstrate super-sonic hearing and the ultimate night-vision.  Other migraine sufferers might know these supernatural abilities by the more common medical-phrase of “sensitivity to light and sound.”  During a migraine, my husband swears that I can hear his thoughts.  If the television is on, I keep trying to turn it down until I realize that the only thing lower is “mute.”  No room can be dark enough.  I often wear my sunglasses in the house like a rockstar.  Well, I wouldn’t want my cat to recognize me and pester me for autographs would I?

3. I’m wild!

HulkWell, my moods can be anyway.  Have you ever heard of a calm monster?  Nope.  I didn’t think so.  My husband will be amazed I’m admitting this, but I can experience some intense mood swings.  My chronic illness and pain can have some undesirable effects on my ability to maintain a calm-pleasant demeanor.  I try, but sometimes I snap.

2. I am a Creature of the Night.

Everybody knows monsters are nocturnal, and I am no exception.  The whites of my eyes can be seen more often than they should be in the wee-hours.  Most people with chronic conditions can tell you, one of the very frustrating tolls that the illnesses take on your body is that even though you are fatigued and your brain is tired, you still struggle with getting a good night’s sleep.  Chronic diseases cause insomnia in general; my personal symptoms of diarrhea and pain mean that I also wake up a lot to tend to or bear these disease manifestations.  (Bear, ha!  Did you catch the awful pun?  Nope?  Just my degenerate brain went there?  See – it is decomposing into monster-mush).

Cartoon eyes in the dark

1. I have a Frankenstein-Body.

Cartoon FrankensteinMuch like the mashed-together monster in Frankenstein, my doctors have cut, combined, stapled, and sewed my defunct parts into a mostly-functioning Tosha.  I have had a total colectomy (my entire colon was removed), a few ostomies (my intestine protruded through my abdomen), and my small intestine is now reformed into a j-pouch (an internal reservoir).  My stomach is criss-crossed with the scars from these and other surgeries.  Luckily though, I can honestly declare that my surgeon did an amazing job at keeping them as minimal as possible.  I have a very fashionable dissected tummy!

I also bruise easily.  This means the copious amounts of blood that the medical facilities take from my hands and arms leave me looking like a heroine junkie.  Additionally, the bruises from my clumsiness scream abused wife.  Sometimes I like to look toward my husband when people ask me what happened.  (You should know that I didn’t start this until he told the emergency staff that I was the reason for his bloody face after his bicycle wreck.  Karma.)  Of course, the medical staff never has any concerns about Mike once they release my arm and realize they left a bruiBlack and white Mickey Mousese just by holding it.  If Mike were beating me, my whole body would be the color of a kid-friendly singing dinosaur.

Likewise, always on the verge of dehydration, my missing colon and IBD symptoms leave my skin excessively dry, making it very vulnerable to cuts.  Just this morning I gouged my thumb, spraying blood all over the bathroom , just by opening my deodorant.   So, in addition to the scars and bruises, I often leave the house bandaged up like a mummy.  Of course, I prefer to keep fun band-aids around so that cuts turn into smiles.  Today I’m sporting Mickey Mouse.  Hmm, maybe I’m not such an evil monster after-all.  Well, there’s always next year.

Related Articles You Might be Interested In:

  • What is it like managing chronic symptoms and pain on a daily basis?  Check out Spoon! to give you greater insight.
  • Embrace the Halloween season and the fun of Plants vs. Zombies, a great game to help escape with A Zombie-Fighting Military.
  • Curious about those syringes in my fridge?  Read about my first experiences with Cimzia, an injectable-biologic medication, in I Do Tricks for Treats!
  • My symptoms are not the only ones making me feel like a monster this month.  Check out I hate flares by a dancer with arthritis.
  • Find yourself in the clutches of Brain-Fog?  Check out the article: 10 Tips for Navigating Your Way Through Brain Fog on the site butyoudontlooksick.com
  • Have you seen any of the Halloween light shows on YouTube?  They’re incredible.  Here’s one to get you started:
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33 thoughts on “My Monster Transformation: The Top 10 Ways My Medical Conditions and Treatments are Warping Me Into a Halloween Mutant from the Dark Side

  1. My favorite superpower was the ability to bleed black. It has since been replaced by the occasional epic nosebleed – significantly less cool! 😉

    • Bleeding black is pretty nifty! I’ve had other bodily fluids change colors from meds. My favorite was blue urine. I’ve never bled black though.

  2. As usual, Tosha’s blog shows her intelligence, stamina, courage, and humor. Wonder where she gets it from? Please share it with anyone who might need a boost in life’s journey, especially those who deal with chronic illness/pain or have a loved one who does.

  3. Tosha,

    It is MY honor to stop by your blog. 🙂 You are a courageous young woman and I miss your devotional blogs at Rest Ministries. I still sometimes visit your “archives” there, but I understand your needing to put your priority into this blog instead. I know well that people with chronic illness have less productive time than others. Thanks for the compliments on Music Therapy. We do have a lot of great tunes to share!

  4. I can understand, Tosha. I tend to also be “put off” by sites I have to join in order to read and usually I will just leave rather than join. But, with the Sunroom and so many discussing medical issues, I can understand the need. Hopefully you will gain a large following here!

  5. Pingback: My Hair-owing Halloween with an Ambulatory EEG « Bottled Time

  6. Pingback: Keppra- Grape Flavored Brain Drain and Mood Swings in a Bottle « Bottled Time

  7. Pingback: Let’s Caca!: Raising Awareness about Crohn’s & Colitis, IBD Symptoms, and Medical Care « Bottled Time

  8. Finally having time & focus to explore your site more. What a great post this is. You certainly deal with many more medical problems than I — how you accomplish what you do, despite your body, is truly heroic.

    You wrote, ” I still struggle with daily pain, cramping, and nausea from my caloric consumption. As much as I love food, in general we just don’t get along.” This very thing has plagued me for years. I used to get so much anxiety before eating that I had to take ativan before each meal. Eating just flat out HURT for hours. At one point I just stopped eating, lost 1/3 of my weight and ended up on TPN. That was in 2007. I’m still 25lbs underweight, and I eat by the clock, alarms set for B, L, & Dinner. No more ativan, well sometimes, and less pain & nausea in general, but food is still a daily struggle. I also eat the same handful of things everyday. Occasionally, I’ll introduce something new, actually something old that I used to eat when I was healthy, but the result is seldom worth the momentary pleasure, and has at times forced me to bed for a couple of days. The upside is the pile of $$ I’ve saved from swearing off beer, wine, and restaurants for years.

    You also write about noise hypersensitivity, which I’ve planned a medical blog on, as I have it too. Yeah, it’s a neuro response to chronic illness, so you are getting it double — migraines & chronic illness. The friction of my better half moving on the bed sheets makes a noise that burrows into my auditory cortex like an insatiable termite.

    And sleep? It’s like manual labor in bed — working to sleep is flat out exhausting. I have teflon insomnia: I keep telling my doc, “throw any sleeping pill you want at me — it’s futile, none penetrate.” Guess I’m saving $$ there too. Makes me feel better about the pricy reading glasses I recently bought, since I spend more time gazing at the computer screen than the back of my eyes.

    It’s been over 6 months since you posted this, so I really hope you’ve been touched by the healing hands of time, if only a little. You certainly deserve it. Your attitude is humbling — so I will try my best to follow your tremendous example and make my surroundings a little better, my persons a little more comfortable when around me. Thanks, Tosha, for being you.

    Namaste,
    Cary

    • Cary-
      I’m glad that you’re enjoying exploring the blog a bit more. As it takes me so long to write a post, I’m glad somebody’s still reading them after 6 months! Chronic symptoms and brain fog are definitely teaching me lessons in learning new ways to do things, and in letting go of some of my perfectionistic tendencies.

      The battle with food is a difficult one. Exploring new foods has always been one of those “good” things in life that I enjoyed. I haven’t given up all of my efforts, but they are tempered. And learning to live with chronic illness, with any challenge really, means learning to accept the challenge and find new ways to do things. I know there are other good things, and life can still be enjoyed. I’m determined to learn how! This doesn’t mean I don’t ever get down or frustrated with the process. I often fall. But, I’m getting better at brushing myself off & trying again.

      “Opportunity is missed by most people because it comes dressed in overalls and looks like work.” ~Thomas Edison

      I am very interested to read your noise sensitivity post when it gets written. I have noticed that my sensitivity has increased even when I don’t have a migraine. I figured it was a reaction to one of my meds. Should have guessed it’s just another benefit of chronic illness. There are so many I’m losing track. 😉 I know your site is new, but I love what you’re doing so far!
      Bottled Spoons-
      Tosha

  9. Reblogged this on Rollin With Outta Colon and commented:
    Read Tosha’s dynamic post and gain insight to what heroic means in reality. The hurdles people with chronic illness have to clear on a daily basis are impossibly high, yet Tosha, and so many with chronic illness show that will can overcome almost everything. And that is profoundly inspiring.

  10. Being new to this whole Twitter-blogging world, I read this post today.
    I admire this ability you have to smile at things. I love your perspective of the world and the way you choose to look at things, Tosha.
    Xxx

    • I’m always glad when people discover my posts after the fact. It takes me so many spoons to post them and they each feel a little like my babies that it’s nice to know they live on longer than a day or a week.

      As you know, my perspective is ever-evolving. Some of the days can be pretty dark, but I do try to land back in the light eventually. It has been great meeting and getting to know you on twitter and through your blog posts!

    • I really liked your post about that recently. I do wish we could sparkle. Or at least meet a nice sparkly vampire who can bite us and restore us to perfect health. Drinking blood and living forever wouldn’t be too bad then!

  11. Hi. I absolutely LOVE this entry. The only chronic illness we share is Migraines. I have chronic migraines…daily..or if I’m lucky almost daily. 🙂 Your #4 made me laugh out loud and on a day where my cranky pants are on tight, you performed a miracle! I use closed captions on the tv and what you said about reading your husband’s mind is hilarious because it is so true. In the throws of my more severe Migraines, I can anticipate my husband’s movements because sound/movement combination is so assaultive! The poor man dances/tip toes around our room no knowing which way to go. Its like the Indiana Jones movie (don’t remember the name) when he had to step on the right letter or everything crumbled. I hope that analogy made sense. Anyhow! Thanks for sharing. I was looking to commiserate with someone who has felt they have turned to the dark side (temporarily) and found myself laughing. Just wanted to say thank you!

    • I love the Indiana Jones analogy. My husband definitely does a good impression of that himself. And the look on his face…I really don’t know how to describe it…dire apprehension? I never want to make him feel that way but it does feel like he could step on a mine and blow my head to smithereens. Poor bloke. I’ve gone through a lot of pain in my life and migraines are certainly one of the harder ones to bear. Anything that might provide relief or a distraction is generally off-limits since it’ll just make things worse. Yet dark-quiet rooms filled with pain can become depressing quickly. Sending a virtual hug and lifting up a prayer that you are able to find some relief soon.

      • P.S. I tried to post a comment on your blog but it’s not working right. I’ll pretty sure it’s because I’m on a mobile device. I’ll try again from a real computer but it might be a bit before I get there. So-sending you some blog-love from here.

        I love that you’re “flying with hope.” Your whole blog has a great feel. Of course, I know that doesn’t always mean you’re “up.” Here’s a prayer hoping you have more days soaring than grounded.

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