Where There Is Smoke, There is Fire

Where there is smoke, there is fire. I doubted whether I would live to say this but today was a stupendous day. Searching for kindling at the base of our woods to burn in our chiminera, I disturbed a yellow jacket nest. The bees refused to accept my sincere apology because I got stung in the neck, which for an anaphylactic with Mastocytosis is akin to a bulls eye in darts on the receiving end. I felt the pinch in my neck and heard buzzing all the way up the hill. A testament to my stubborness, I never dropped the kindling in fleeing. I ran into the house mouthing to my wife the same sorry doomsday scenario that she has heard for the third time in six years in only a seven year marriage.

I panted, “I think I got stung by a bee.”

By the time I checked for the stinger in my neck with a glance in the bathroom mirror, my concerned loving wife had already made it to the car with my Epi-pens. I jumped in the car and we rode to the hospital at breakneck speed. I worked to lower my heart rate to avoid spreading the bee venom even faster. She worked to save my life again.

A few tedious moments passed before I knew that something was going strangely right this time. Nothing happened. I never even used my Epi-pen although I should have erred on the side of caution. I wanted this to be the litmus test for the years of immunotherapy and clinical trials at the University of Pennsylvania Hospital. Other than a slight local reaction on my neck, no other symptoms developed. Against my wife’s better judgment, I never left our parked car at the emergency room entrance to seek medical attention in the hospital. Like a bulldog, I came home and built that fire for the chiminera. It was a stupendous day, a truly memorable Memorial Day weekend.

The Bare Bones

My female technician for my Dexascan test was an attractive Asian woman blessed by a sparkling personality. Despite being in the sterility of a hospital setting, she took a few earnest minutes to get to know me, which I liked. She then took my vital signs, the results of which she liked. Standing with my back to the wall, she then used a growth stick to measure my height at a pedestrian 5’9”. I felt like a shrinking violet cut down to size.

“5’9"?” I argued, “How did I lose an inch of frame since high school?”

“Skeletal changes can happen, Mr. Tornatore. That is what this radiology department is about.”

A little too caught up in my vanity, her gentle touch needed to guide me over to the bed for the actual procedure. Dressed in a loose goosey hospital gown, I feel a little self-conscious by her human touch. After she positioned my head on a pillow, she asked me if I was comfortable lying in the prone position. I told her I never tell lies in this position. She roared.

She kept her smile positioning the scanner directly over me pelvic region. She grabbed me by the ankles to uncross my legs. She touched my shoulder to remind me to relax, lay motionless, and breathe normally. I was a puppet to her touch now. She had a subtle but commanding way about her that I have seen firsthand with hypnotists. I knew then I would have barked at the moon if she asked.

She reported to a monitor, pressed some buttons, and a dual energy beam of very low dosage x-rays passed over me. The beams measure the difference between bone density and soft tissue. It was quiet for about two minutes when I heard her voice, that voice again.

She complimented, “My, you have nice bones!”

I tried to swivel my neck to gauge more context from her expression but she instructed me not to move.

In a softer voice still, she commented, “You see, all that worry about being an inch short.”

“Thank you.” I blushed, still not certain if we were talking about a non-invasive procedure.

Skin Deep

Over the last year, my body has undergone subtle changes. We take you now inside my last visit with my allergy immunologist, who treats my rare skin disease Mastocytosis. He is a wonderful doctor but one who may be used to bending his ear a little more for acute patients.

Upon examination, he gently scratches my forearm with the double swipe of a metal instrument to provoke Darier’s sign. Whealing, itching, and swelling infiltrate the localized area. This is a pathogenic sign that the mass production of histamine in my body is poised for immediate release.

He remarks, “Your body is very sensitive.”

I said, “You do not know the extent of it.”

“Tell me.”

I explained, “Since my last annaul examination with you, normal every day occurrences have developed a negative impact. I can’t lean on anything because the pressure becomes too great. It hurts when my fingers go through my scalp to wash my hair. Socks that I have worn in seem like they fit too tight. The jet stream of the shower head pummels my body. Sleeping on my stomach feels like it lights my organs on fire. I constantly switch sleeping positions in bed to alleviate the pain. A ten-pound weight at the gym feels like a 20 pounder. Sitting too long is uncomfortable. I find myself unconsciously standing to avoid contact with anything. When I bump into an object, the body part coming into contact hurts deeply and for an inordinate amount of time."

I read his body language. I knew that the moment I stopped complaining I was going to get the patented speech about reducing the amount of stress in my life since stressors play a role in manufacturing histamine and making my disease worse. I didn’t get his undivided attention until I added, “My wife’s touch sometimes hurts.”

He grabbed his prescription pad, ordering me to undergo a Dexascan and bloodwork to shed some light on the problem. People often ponder the question: Which of your six senses would you give up first? In the last year, I have arrived at an answer that has everything to do with my skin disease. Hands down, the sense that I would sacrifice would be touch. It pains me just to say so.

Survival of the Fittest

I turned forty years old before I fully understood my skin disease. Sustained exercise robs me of endurance and drops the oxygen level in my bloodstream. My muscles fatigue regardless of conditioning. My body fails to cool itself so I incessantly perspire like an expectant father of quadruplets fighting the inevitability of parenthood.

Mastocytosis brings added challenges to my love affair with sports, especially racquetball. Racquetball is a moveable game of chess played at a hundred miles an hour. It is an exhilarating game of reflexes, sprinting, and strategy. Although I play the game like a wet mop sweeping the hard court now, allow me to reminiscence when I was not only in better shape but when I lived in ignorance about my skin disease.

Playing against my skin disease and worthy opponents, I finished the 1999 Bally’s Racquetball League four points shy of going undefeated. Amassing 59 Wins and only 1 Loss, I coasted in the playoffs and won the gym championship in my bracket. Feeling my oats, I entered a sanctioned South Jersey Racquetball Association Tournament. Experienced racquetball players from across the state entered the event, a three-day tournament from Friday night until Sunday afternoon. It was survival of the fittest, a best of three game single elimination tournament.

Lose a match and you go home dragging your racquet between the legs. While I shift my balance well and possess lightning quick reflexes, that is not much of an arsenal in statewide racquetball tournament play. I have no kill shots in my repertoire. I do not hit winners. Consequently, my matches are marathon events measuring attrition. My racquetball game consists of hustle and instincts that calculate probability odds of my opponent's shot placement. My game plan attempts to guess right and outlast an opponent’s body or mind. Surrender has never been an option for me.

On Friday night, I won racquetball matches at 7pm, 8pm, and 10pm. Saturday was no less grueling but my winning ways continued. It wasn’t just tough on me. I took credit for making an opponent vomit. While my racquetball game made it to Sunday for the semi-finals, my body felt quite differently about the ordeal. By Sunday morning, my body felt like setting concrete. I had difficulty even rousing myself out of the bed slab just to make it to the gym.

I won the semi-finals on Sunday morning. In the finals, I faced the #1 seed in the tournament, a confident experienced player. He played the game with mach speed and power. I found few holes in his game and Las Vegas would have had him as the odds on favorite. I barely won the first game 15-12 but not before trading innumerable shots in a 40 minute game.

In the second game, I controlled the early action but my opponent went on a run to close to 10-9. I called timeout because I could no longer pump air into my lungs. My body overheated, evidenced by my plum color. My skin lesions erupted to a fiery hue. I felt on the verge of collapse. Gulping water and air, I lifted my head from the water fountain. Perspiration seeped from my headband. I knew if I lost this game, he would steamroll me in the deciding tiebreaker to win the tournament.

During the timeout, I changed my shirt for the third time. I caught my first glimpse of the trophies resting on the wooden bench awaiting a coronation. While there existed only a slight height difference between the first and second place trophies, the engraved markings made all the difference in my world. My mind locked onto the first place trophy and I took this visual back into the court like a hungry bulldog thrown a T-bone. It was now or never to take care of business.

On the next point following the timeout, I made a backhanded sprawling dive on a ball that perfectly died in the corner's wedge. What a difference an inch makes. The point shifted the momentum back my way. My opponent never mentally recovered and he started to make unforced errors. Like so many other opponents before him, I had broken his will to win. A decisive point later, I raised my hands in an underdog’s triumph. Afterwards, we shook hands to show sportsmanship. My opponent smiled agreeably through clenched teeth. He knew he just lost to a man who could barely breathe.

I have since come to learn the negative effects of exertion on my skin disease. I risk triggering anaphylaxis by putting excessive stress on my body. I had forced my body to operate on blind ambition while ignoring the warning signals. No amount of conditioning can offset my skin disease. This racquetball match marked the last time I played competitive sports. I miss it but I went out a winner.

Rubbing Salt In My Wounds

On better days...

Saturday July 23, 2005 represented the end of an era. I chose to abandon my saltwater tank, a four year science project that has cost me mega dollars with minimum satisfaction. I still do not know what stung me a few weeks ago( see July 3rd post called Fangs for the Memory ) while cleaning the inside of my tank but I believe it was a warning sign to wave the white flag of surrender. Furthermore, I recently found all but one of my gorgeous fish waterlogged floaters. If that isn't a second sign, I may need a lightning strike and a visit from Aquaman himself. I wish I could blame the massacre on a stray cat that found its way into the house but I have only myself to blame.

Let me explain. A saltwater tank hobbiest needs to be part veterinarian and chemist to maintain a healthy ecosystem. I have come to realize that I cannot pass the entrance examinations for either occupation. My dead fish and fragile coral reef are examples of my incompetence. A saltwater tank is like a soup that never gets done. Too many things can go wrong in a saltwater tank and you keep adding stuff to the mix to rectify the situation. You keep cooking and stirring. I devoted regular time to aquarium maintenance and water changes in the 40 gallon tank but some pool owners had more free time than me. Incidentally, pool owners got to swim in their water and not be reduced to a full time lifeguard like me. Power outages, Ph variations in the tap water system, skyrocketing nitrate when a fish had the gall to die on me, contamination from airborne cleaning products, changes in temperature, disease, pestilence, and any number of wildcards like children throwing pretzel rods in the tank as make believe canoes all negatively effect the water quality. Saltwater fish are expensive, many costing over $50.00 each. Whenever I lost a fish, I thought of how much flounder I could have put on the kitchen table to eat. A gruesome analogy, I know.

Using a mesh fish net, I scoop out the lone surviving braveheart Trigger fish from the recent death toll. He is eager to leave the land of the dead and does not fight his eviction. I place Trigger and just enough bubbly in a Ziploc bag and head off to the aquarium center. Once inside the store, I start feeling like a parent deserting a child. I muster up enough gumption to talk about trading the fish in. There is nothing like buying a fish for $39.99 retail and being told there is a no trade-in policy on livestock. Talk about rubbing salt in your wounds. I look down at the bagged Trigger fish, who all but shouts to be thrown in any other tank, including a skinny dip with the piranhas, before returning home to my cesspool. I offer up the sacrifice. The young worker with multiple tattoos snatches the plastic bag from my grasp.

I am feeling bad, really too much sentiment towards a slimy fish with scales. I start walking up and down the aisles now empty-handed admiring tropical fish waiting for adoption. My mind laments my decision to abandon sea. Have I turned this into a bigger decision then it needs to be? Should I give up my hobby all together and just play online checkers? My mind begins to enlist instructions to prompt me to action. 'Now go home and drain the tank then throw some stupid goldfish in the glass menagerie and be done with it. Do not stop at any fast food joints to indulge in guilty eating.' My face is all but pressed against a tank of tinfoil sharks when a stranger strikes up a conversation with me.

"Have you ever raised koi?"

If it was koi he wanted, coy he got. "I don't raise too much in water except toxic PH and nitrate levels."

He persisted, "But what do you think of koi?"

"Hearty fish." I answered matter of factly. "I hear they can live 50 years."

"You're God damn right. That is way too much commitment for me. Thanks." ...He walked right out of the store.

I decided then to keep my peaceful hobby but with a full retreat back to freshwater aquariums, where maintenance is lower and fish are inexpensive. Six hours later, I finished breaking down the saltwater tank for its conversion all the while the stranger's odd remark kept cycling in my head. Keeping anything in this world alive and healthy takes responsibility. Any fish hobbiest comes to understand that fact of life. And any divorced father will tell you that with children...you can't start over.

Fangs for the Memory

In arm's way again.

While cleaning out my salt water aquarium this morning, I had a brush with mortality. Up to my arm pits in sea water, I felt an unmistakable piercing sting on my arm. An insect sting is a helpless feeling for someone with my skin disease. Splashing a lot of water round in the process, I recoiled my arm to dry land. Something envenomous just left two fang marks on my forearm. I had no idea what stung me but my arm immediately burned and itched. The sting area reddened. I wasted a lot of mental energy trying to figure out what in the heck could have stung me.

I reached my svelte 120 pound wife on her cell phone at a Weight Watchers meeting? I explained the bizarre event and she escalated to frantic mode. I popped chewable Benadryl out of the medicine cabinet and waited for her and God's next move. I started to sweat profusely and felt a little weak so I sat down. I clutched the Epi-pen as if it were the antidote to my life but I did not use it. Ninety percent curiosity and ten percent stupidity got the best of me. I speculated whether the last four years of immunotherapy would actually prevent my Mastocytosis from flooding my system with excess histamine causing me unconsciousness and anaphylactic shock.

While I worked on my science experiment, my wife raced home. She found me in the kitchen, the same room where I labored following previous bee stings in 2001. Call it deja vodoo on a footstool to death's door. My wife began to sob when I said I wanted to wait it out and not go to the emergency room. I speculated about a list of villains including microorganisms, poisonous coral, and water spiders. I tried biofeedback to lower my blood pressure and calm my body for the next 45 minutes. Gradually, the swelling on my arm stopped, the sweating subsided, and my airways were never in jeopardy.

I think longingly of all the days I have invested sitting in a hospital getting immunotherapy but this was my first litmus test with an insect sting. My arm still hurts like hell but I am not laying in a hospital hooked up to a vent and tubes. Three cheers for immunotherapy but a guy should be safe in his own home. Why do I have so many encounters with insects? I feel like I am never out of arms way.

School of Hard Knocks

I feel like my life is on a swing in that I can be knocked off at any time. Knocked off is the operative word. I have had two close calls with stinging insects in the last week and I hope it is not any indication of what the summer will be like for me. I haven't been stung by a bee in four years and my skin disease, Mastocytosis, is enjoying the time off. Knock on wood. I attract bees like a honey magnet and the freak encounters mess with my fragile psyche. If I were a superhero I would call bees my arch enemy and be done with it. The Bee Man of Blackwood, as Ripley's Believe It or Not has dubbed me, is anything but an ordinary life kept on guard.

Last Saturday, I went out with friends to play tennis. I took timeout to lean against the metal post of a tennis net. A red wasp started to buzz my face. I had no food, don't wear cologne, and I wasn't bothering the insect. It remained annoyed and darting. It would not relent until I moved backwards to stand against a chain link fence. After I obliged, I noticed that the wasp flew into the slither of a crack atop the metal post. Wasps had nested inside the warm confines of the metal post. My hand had been covering the entrance to the nest. With wasps coming and going, I do not know why I was not stung.

While doing repairs to our wood deck, I had another close call with bees. Knock on wood. I had just removed the rope lighting from underneath the overhang and gave a deck plank a whack of the claw hammer. Knock on wood. I reached my hand underneath and tried to pry the planking off. Carelessness caught me without work gloves. So much for a life on guard! Without protective gloves, I felt a foreign papery substance in the corner of the planking. Wait a minute the coarse feel of paper can mean only one thing. A bee's nest! I jumped backwards and landed on my butt about five feet behind where I took up shop. With splinter's wedged in my buttocks, I crawled forward to investigate my fears. Not only did I put my hand on a bee's nest but the nest was inhabited by a mindful yellow jacket. I have no idea why the bugger didn't sting me when I all but crumbled its nest.

I should be in a hospital emergency room right now. I could be dead. I am alive for a reason. Life is a bunch of hard knocks. Knock on wood.

Who said all hands on deck?

Catch Me If You Can

In 2001, bee stings nearly cost me my life twice from freak incidents four weeks apart. My body's reaction had little to do with a bee allergy per say, but everything to do with how my skin disease, Mastocytosis, overreacts to venom. On both incidents, I was stung in my own backyard adding to the adage the most accidents happen close to home. Waiting for an ambulance to pick me up almost proved costly the first time I was stung. Not to fret, the law of averages alone told me I wasn't due for another bee sting in years.

Four weeks later, bees attacked me again but the disorientation I experienced made the first sting seem like a mosquito bite. This felt like impending doom. I knew that if all 225 lbs of me fell unconscious like the last time, the spot I landed could very well be the spot I died. My wife is petite so my limp body would have been like a jockey trying to drag his dead horse. I managed to stagger into the minivan and my remaining faculties used an Epi-pen stored in the glove compartment. Then I passed out in the front seat. My wife started a zip drive to the hospital with four screaming children strewn across the backseat. My body swelled, my throat closed shut, and I turned blue. Doctors later estimated that I had inside of ten minutes to live from the time the minivan reversed in the driveway. My life was saved that fateful day by my wife, who opted not to wait for an ambulance to knock on death's door.

I still needed a little Lady Luck and it arrived not only right on time but right in our path. An automobile accident detoured traffic right outside of our housing development. My wife drove around the detour and spotted police and ambulances on location. Another back-up ambulance, which had been dispatched to the accident scene, provided my unlikely high-speed shuttle to a hospital with call-ahead dial-up triaging in the works. I made it to the hospital in the nick of time but that's where the real fun began. I needed life support before it was all over. It sounds funny to say but we were lucky to find an accident. Irony seems to follow me everywhere in life including to the hospital when I needed it.

The following is an excerpt from my autobiography, Stop and Smell the Silk Roses: "Every once in a blue moon there is a person born who is so lucky that his fiancee finds him an ambulance originally intended to transport someone else. Accidents are meant to happen and irony is for anyone who cares to look. This is a story tested by adversity, tethered by love, and measured by humor. This is my life."

I received a charitable donation fund letter in the mail from the very same ambulance squad who rescued me. The rescue squad is a non-profit organization and donations are relied upon to cover operational costs. It seemed good business sense to target repeat customers in bulk mailings. If I said it once, I said it twice. Never bite the hand that feeds you, especially when it is a bee who stings you. I noticed that the Rescue Squad's mission statement has changed. I did a double take but it really read, "WE CAN'T HELP YOU, IF WE CAN FIND YOU. Now this has got to be the rescue squad for me. They might as well print bumper stickers with the catchy slogan, Catch Me If You Can. Well chasing an ambulance worked once, why not a second time? Given the new mission statement, I don't think their fundraiser will be a whooping success but I'm donating. You can bet my life on it!

I repeat. Irony is for anyone who cares to look.

The Seven Year Itch, a Short Time in Comparison

For the last few weeks, I have endured intense itching all over my body. I have been baffled as to what is the exact cause. Poison ivy hasn't appeared on my body and checking with my wife to see if she changed laundry detergents is pointless. You see, I do my own laundry and I haven't been in the woods lately.

Seriously folks, the real culprit is Mastocytosis. A symptom of my skin disease is itching but trying to determine what, if anything, is causing the itching is always the baffling part. For readers who do not have this disease, I offer the following comparison. The hundreds of tiny brownish-red lesions covering my skin itch like a nasty case of chicken pox that lasts for an entire lifetime. Can you hear me now? The seven year itch would be a short time in comparison and a more pleasurable experience. Not that I am allowed to scratch that either.

In understanding my body, I now can identify triggers which serve to intensify the itching - too much caffeine, rigorous exercise, extreme changes in temperature, situational stress, certain antibiotics, novel foods, etc. Every once in awhile, however, something gets beyond my vigilance and I must turn to using a metal rake from the garage as the back scratcher of choice. Not a pretty sight.

In this day and age, there is nothing wrong with being a sensitive guy but somebody has got to find a cure for Mastocytosis. I have broken all of my rakes and the Fall leaves are piling up in the yard.