Living in the Storm

I know for certain in life, that no matter how horrific your day seems; you were late for school, the electric bill isn’t going to be paid, you wrecked your shiny new car, you had to stand in check-out line longer than you like, your teenager needs braces you can’t afford, old man winter just buried you in 8 feet of snow (shout out to my family and friends in Buffalo), your airplane ride home was delayed, you got in a skirmish with a loved one or you are having the day from hell at work; not being healthy TRUMPS it all.  You can buy lavish expeditions, luxury cars, mind-blowing household amenities, designer wardrobes and a first class education but when you don’t find yourself in decent health NOTHING else matters. All the greenbacks and schooling in the world can’t help you.  Sickness is the great equalizer.  It brings the WHOLE SHEBANG into perspective.  I know a touch about this because I have exhausted a hefty amount of my adulthood tussling with an autoimmune bowel disease known as Ulcerative Colitis.  If you aren’t aware of what it is, please Google it, the more attention I can bring to the Crohn’s Colitis foundation, the closer we will get to a cure. 

My UC devours a significant part of my life;
turning me into an 8o year old woman talking about my bowels daily to whomever will listen. UC is an invisible illness.  One hour you’re perfectly fine and the next you could be the most intense pain imaginable. For me 80% of the time, things are going groovy and I live as a perfectly conventional functioning adult but look out for that other 20%.  If I didn’t tell anyone I have UC, they would NEVER know.  That is because when that 20% comes around; I bottle all the pain up and crawl into a ball at home.  My daughter and husband know this all too well and seem to be the ones that take the brunt of the negative mood swings and down in the dumps days (see what I did there) because I don’t want to be seen by the outside world, in that light.  I don’t aim to complain, but now and again I wish my cross to bear was a disease I could chitchat about at the dinner table with friends and not feel self-conscious about.  I can’t help but consider it being easier to have one of my limbs cut off or a third eye in the middle of my forehead because then I could easily explain what is wrong with me to others.  On the outside I look fine, but my scars and battle are materializing on the inside behind closed doors. I have had ups and downs, good days and bad but I have always considered myself one of the LUCKY ones keeping my UC in control more times than not but I’m constantly waiting for the other shoe to drop.

This past year has been an astounding year for my UC, no flares during the dreaded spring allergy season, and a year of existing like a typical individual, only consuming one daily medication.  A few months back I even declared, since my UC remission was thriving and my gluttonous eating had packed some bulk on, that I indeed had time to center my attention on getting my life back on a healthier track.  I kicked my 2 liters of Mountain Dew a day addiction (don’t judge me – I don’t drink coffee and I NEED the caffeine to get my ass moving).  I began guzzling 100oz of water a day and altered EVERYTHING about how I was eating, appreciating vegetables and fruits once more.  I even began doing a bit of YOGA.  In a 2 month time period, I dropped 20 pounds and I can say I’ve NEVER felt so good.  It was remarkable to remember what feeling well feels like.  All of my soreness, discomfort, aches, cravings and bloat stripped away!  This was a point of paramount significance for me, I mentally was in it for the long haul and I was enjoying the whole kit and caboodle.  My UC was no longer a primary focus for me; it was moved to the background and I fancied it there.  Things were going fantastic up until, I got this minor head cold, it was nothing ghastly just your standard run of the mill cold.  Given that I was blessed with Ulcerative Colitis I have ascertained this, MY IMMUNE SYSTEM SUCKS!   I settled on being pro-active and instead of enjoying the weekend with my family, I took it easy in bed for the entire time and kicked my cold swiftly, hoping to have caused very little stress on my body.  Regrettably it was this little hiccup that made the other shoe drop.

My UC indications started appearing and the rollercoaster that is my life started to click and clack up the hill.  I was ready to brace myself for that first drop, having no idea how long this ride would be.  All I could do was ask myself, “Why Now?”   Inopportunely this hit me hard right before my Jamaican getaway with my husband.  Why does it feel like every time I am doing great, and finally start to get my shit together (I couldn’t help that one), this illness decides to knock me down?  I really wanted to lose my shit (couldn’t help myself there)!

I read a quote by Haruki Murakami that said, “When you come out of the storm you won’t be the same person that walked in.  That’s what the storm is all about.”  If ever there was an instant I feel like a shit storm is upon me (pun intended), it’s right now.  In the last month, I have amassed my own private pharmacy of prescriptions having had the luxury of trying them all out and enjoying all their side effects, depleted our health savings account, I have drove my doctor’s office crazy with requests (soon they will be fitting me for a straight jacket and plunking me in a padded room).  Even the individuals at the lab know me by name when I drop off my stool samples and I have sobbed in my husband’s arms more times that I can count.  It’s been one HELLAVA storm.  Fortunately in the middle of its wrath, I took some time out to enjoy the eye of this storm.  Despite how I was feeling, I didn’t let my illness alter my plans and I spent five days in a Jamaican paradise with the love of my life.  Yes, I was on steroids that didn’t seem to be working.  Sure, I journeyed on airplanes with extreme cramps during excessive turbulence with no way to get up and go the bathroom because the damn captain wouldn’t allow anyone to move about the cabin.   Of course, I was woke up several times in the middle of the night with severe pain and a number of jaunts to the toilet having watery diarrhea with major quantities of blood.  Let’s just say, I know where every bathroom is located on the grounds of the Secrets Resort in Montego Bay, if you need help pinpointing one, I’ll draw you a map. 

Through it all, I must say I did the best that I could under the circumstances and it still was one of the most enjoyable times of my life.  It’s all how you look at things, will the glass be half full or half empty today?  The all-inclusive resort was so gorgeous and relaxing; at times I had to pinch myself to see if it was real!  Turquoise water, white sandy beaches, Pina coladas (virgins of course), gourmet meals that someone else cooked for me, the weather was a tropical 80 degrees first thing in the morning and my solitary decision for the day was where to plunk my ass; by the ocean or the pool.  We had nothing to do and all day to do it.   I know this is what my heaven will look like!  Nothing could take away my pain during our getaway but I didn’t let my pain takeaway my happiness. 

 

While loafing on the beach alongside my husband, basking in the sun, gawking out into the crystal clear aqua water, Pina colada in hand, I couldn’t help but think I am the luckiest person on earth!

I’m still in the middle of bad flare, in pain, scared each and every day and trying like hell to battle this storm.  The UC winds might have knocked me down when things were going harmoniously but I am more DETERMINED than ever to get back up, pull on my shit kickers (it’s just so easy) and begin rebuilding!  This storm has revealed to me that I can dig deep and I have to focus on the good, no matter how hard it is.  I will emerge from this storm stronger than I entered.  If I can get through this, all my other problems will pale in comparison, because I will have my health.  I am more determined than ever to get back on my healthful journey and I will ONLY allow this to be a speed bump along the way. 

I am not writing this so that you feel sorry for me but to raise awareness to an awful disease that will forever be part of my life.  With awareness there is hope for a cure for the 1.6 million Americans that are battling Irritable Bowel Disease (http://www.ccfa.org/).  Recognize that many people live with invisible illnesses like mine every day; unless you are battling their storm, you will never truly understand what they are faced with.  Don’t judge them, just because they don’t look sick; I promise you, it’s real.  We all need to put our difficulties into perspective.  If you are battling your own storm, it can make you bitter or better, it can break you or make you, but you can choose to be the victor not the victim.  Learn from each storm that comes your way, grow and be better on the other side.  Don’t forget to take some time in the eye of the storm to enjoy life and not let your battle take your happiness away.  

If you have your health you have EVERYTHING, so don’t sweat the small stuff.