A Pirate A Day Keeps the Chronic Illness at Bay!

In costume in front of The Black Pearl Shop this summer

On Sunday I enjoyed one of the purely amazing happenings of summer: The Renaissance Faire. Also known as 'the only time you can dress up in a costume (unless it's Halloween) walk around drinking and have everyone think it's completely normal.' This year I decided there would be no wheelchair nonsense. I refused to take one and ruin the mood. After all, it was Pirate's weekend and it would be hard to plunder asunder in a wheelchair. 

Restricted to a wheelchair after keeling 

over in 2012

So I planned everything out to make conquering the day a realistic event. Keeping my long long hair from stifling me, keeping up the fluid drinking aka lots of honey mead & water, getting in those necessary breaks, and refusing to let my body get the best of me. This is me on the right in my pirate costume provided by my friend, posing on my right, celebrating year four at the Renaissance Fair. She insisted on doing the Jack Sparrow 'the Pearl' hand movement in front of The Black Pearl shop. I gave it my best with my trusty cane in one hand and a glass of Honey Mead in the other.

My friend gets a 'muddy' kiss at the Mud Show

My friend and her boyfriend had to muddle through last year's paramedic medical crisis of mine at the Renaissance Fair and started getting nervous. No one wanted to see me keel over and have the medics-in-a-golf-cart whisk me off to the medical building to drown me in gatorade and smother my body in cold towels. Unfortunately the winding down of the day meant my body started to do the same. By the time we stopped to enjoy The Mud Show my body was starting to get 'the signs.' "I need to sit in the shade" was my beginning comment to the something bad is going to happen montage. To bad the closest benches to the shade were still mostly in the sun. I could feel the heat starting to fill me. My heart was going bam-bam-bam-bam faster and faster. My friend had just survived a 'mud show' kiss and was still trying to get the gritty taste from her mouth when she took an alarming look at me. She was on her way to get water before I could get a 'I really really need some water because it's ridiculously hot in this body!!!' So she left her seat and a few moments later I could feel the signs. Her boyfriend, who I have now known for years, moved into the seat next to me. The time was perfect as I caught a glimpse of the ground. 'Please don't let anybody notice!' was my thought before things went dark. 

We ended Pirate's day on a happy note with a big smile!

I came to laying in a lap with my friend forcing an ice cold open bottle of water in my hands. The Mud Show comedians had distracted the audience with such humor no one had noticed the catastrophe unfolding. Thirty seconds of chugging down ice-cold water and a cool feeling flooded my senses. The water did what my body could not do by itself and cooled me down like a normal person's sweat would. I must admit I am proud of my body and myself. True, I could not go at the pace I did before becoming ill but I'm not sad about it. I was able to gauge what my body needed and modify my routine to it. Instead of fighting against the urge to ignore my body's warning signs, I listened and took life at my own pace. Thanks to that I could spend the day with a cane and not restricted to my wheelchair.


Before you start celebrating with me I have to be 100% honest. I got back and felt absolutely dreadful to the point of barely being able to drag myself into a bed. Within moments I was asleep and spent the next day exhausted, in pure misery from my body's complaints, and laying more dead than alive on my bed. I don't regret a moment of the day but I do wish somehow I could have avoided the day after results. 


Enjoyed hearing about Pirate's Day at the Renaissance Fair? Experience my three years of adventure (this was number four) via my squidoo on it: http://arts-humanities.squidoo.com/a-three-adventure-through-the-renaissance-faire

Today's Heart Ain't Feeling So Happy

My heart has decided to do it's own 'thing' today. Before I suddenly crashed into the chronically ill life I now live I never gave heart health a real thought.The most exciting time I bothered to think about it was when creating a transgenic fish expressing the TBX20 gene and even then it was all about the zebrafish's heart and not my own. Yet today I have woken up remembering just how wonderful it was to never ever have given a second thought to the workings of my heart.

Even as I type this I am feeling the constant reminder within my chest. Back in the day my resting heart rate ran in the mid 60s to low 70s. I never once questioned it until the day everything went to health hell. One of the strangest changes was my heart rate. Just resting it has become normal to run in the high 80s to mid-90s. When I have to go in to an unfamiliar doctor they will sometimes comment on it being 'a bit high.' I just say, 'actually, my heart's feeling pretty great today!' I've gotten so used to it, my body sees laying in bed doing nothing, with a heart rate of 94, as feeling a-okay. 

Then I get hit with days like today. I woke up with my heart beating fast. Throughout the day it started beating faster and faster and at the moment is stuck on a speed worthy of feeling like it wants to sprint free from my chest and go bouncing around on its own.  Meaning just getting out of bed and accomplishing a shower (which I did quite successfully) is like you running a marathon. I literally need to rest simply from getting up and doing what I used to take for granted. On days where my heart rate is outrageously high I have to use my walker just to be safe inside my own home. 

The reason I am not 'safe' is because my blood pressure has it's own ideas of what should be happening with me. Back in the day I believed a high heart rate went with high blood pressure. Looking it at it logically: if the heart is beating hard then the pressure in the blood's arteries should be high. Well, logic no longer applies to me. My heart is going super fast but my blood pressure remains low. Sometimes the heart rate gets far to high to fast and the blood pressure gets low or lower and then it becomes to much. I have a bit of a 'not again!' before the heart rate drops suddenly and I keel over. So using a walker means less work on me and keeps my heart rate from going to high to fast. Not exactly my choice but I could not leave the hospital without them getting me one and the cardiologist was all for it. So being myself I found the amusement and checked out the walker I would truly love. If you would like to know you can uncover the right walker for you here: http://www.squidoo.com/choosing-the-perfect-walker.

For many people out there today might seem like a total failure. I, however, am proud of my accomplishments. With a heart going marathon speed I have taken a shower, eaten two meals, crawled up the stairs, and written a blog post. Plus I have high hopes for a slower heart tomorrow and a happy holiday celebration.

Fyi. If you would like to know more about my happy and not so happy heart then please read my work on living with a heart murmur. Again, you will have to visit via the squidoo link here: http://www.squidoo.com/a-personal-guide-to-living-with-a-heart-murmur


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