This note has been in the works for a very long time as I competed over two months ago in the Chesapeake Endurance Festival’s Ironman Triathon in Maryland.  My sincere apologies to those friends who were following my pursuits quite closely as I appeared to have dropped off of the face of the planet shortly after my last pre-race FB and blog posts.

In all honesty, for the last 8 weeks I have been rather depressed about the results of my race and have needed a bit time to process all that happened and view it from a positive perspective.  First, I did not finish the event in a time that I was expecting. Second, by completing the event, I significantly increased the extent of my pre-race injuries.  Third, I relapsed several times with Fibro attacks after the event.   Finally, I have found it difficult to publish this information since my blog, Pushing the Envelope, was shut down as Microsoft  merged its Live Spaces with Word Press.

In addition, I have found it difficult to adjust to life with a new infant, a job that I may be losing in the spring,  little to no training and no sporting events to be preparing for.  I feel as though a major purpose in my life has disappeared and it has left me a bit out of sorts.

That said, I finished the Chesapeake Ironman Triathlon on Saturday, September 25th  in just under 14.5 hours.  The 2.4 mile swim, 112 mile bike and 26.2 mile run were actually not that exhausting, but were extremely painful for me to complete because of soft tissue injuries I had accrued going into the race.

As you may remember, the week before my competition, my physician thought that I may have had stress fractures on the lateral sides of my knees.  However, two days before the race, my MRI came back negative. Instead of actual fractures, I had soft tissue injuries to the tendons, ligaments and muscles where my hamstrings insert into my upper calves.

Because there were no fractures, my doctor injected me with cortisone, but not in the exact areas of pain.  He couldn’t inject the right areas because they were close to nerves.  If he missed slightly, and injected a nerve, he could have rendered my feet inoperable and I wouldn’t have even been able to walk, much less compete.  In the end, the cortisone helped very little with the pain.

On race day- just to be able to finish the event, I used a strong anti inflammatory drug called Diclofenac, a pain medication called Ultram, the Fibro pain drug Lyrica, and on top of that, Lidoderm pain patches wrapped tight under bandages and sports tape.  This combination of drugs surprisingly did not seem to affect my ability to navigate while swimming, cycling or running, however i did notice a general nausea and difficulty keeping my electolytes balanced.

The race did not begin well for me as I forgot to drop my shoes off at the ride to run transition and ended up late at the swim start.  Rushing, I ripped my wetsuit in a few places, couldn’t get it closed properly and didn’t set my bike up fully in the transition area.

I swam out to the back of the pack of swimmers just as the gun went off and as a result I had to fight my way through the center of the slower swimmers.  Because of starting at the back, my first 1.2 mile lap was slow.  In fact, my second lap was about 7 minutes faster than my first.  I finished in 69 minutes.

The first 50 miles of my ride was fast averaging about 22 mph in strong winds.  I was trying to make up for the amount of time i lost on the swim.

By pushing such a big gear at a much slower cadence, I introduced the pain I usually encountered only on the run into my ride.  By mile 70, I didn’t think I was going to be able to finish this event.  The pain was so bad that i was having a hard time completing the bottom of my pedal stroke.  I had to change my spin.  Instead of keeping my heel level throughout my pedal stroke I had to point my toes to reduce the reach and thus the stretch in my calves.  Also, I could no longer remain in my aerobars; this aerodynamic position required more flexibility and exacerbated  my condition.  Instead I had to keep my hands on the top area of the handlebars and sit upright, exposing my entire cross section to a strong wind which acted like a small parachute slowing me down.

At mile 70, I reached the special needs tent.  There, I had to get off my bike and lay down for about 15 minutes.  I wrapped my injuries with Lidoderm pain patches.  By this point, the cortisone and the oral pain pills were doing nothing to keep the pain at bay.  I seriously thought i would have to withdrawal.

After about 20 minutes the tightly wrapped pain patches started working.  They reduced the discomfort significantly.  I got back on my bike and rode the last fifty miles in and out of my saddle at a pace of about 20 mph.  Every 10 miles i was forced to get off my bike though and stretch out my calves, hamstrings and lower back.  The sum total of these stops cost me over an hour of time and I finished the ride in about 6.5 hours.

By the time it came to transition to the run, my pain was back; even the pain patches were useless.  Within the first two miles i realized there was no way i was going to be able to run continuously.  Any stride longer than a baby step felt like i was going to tear the bottom of my legs from the top.  I had to begin what was to be a combination of marching, limping and power walking for the remaining 24 miles of the final marathon.

By this point in the race, I was extremely discouraged as to how I was doing.  I felt sad that I had trained twice a day for six months only to be able to not compete well.  It took the encouragement of my wife to realize how far i had come in six months from being bedridden with a chronic condition to being able to show up at the starting line of a full distance Ironman.  She reminded me of my single most important goal for the season and that days race…. to show other Fibro sufferers around the world what we were capable of overcoming.

With my wife and parents’ encouragement  I finished and persevered through the pain that day realizing that although I was making my injuries worse,  I was setting a precedence that could encourage other Fibro patients to rise up and take a stand against their condition.

It has taken the last two months to come to the added realization that maybe the injuries I suffered just before the race were a help to my cause.  If I had competed in the Ironman pain free, and done really well, Fibro patients may have felt as though they couldn’t have related so well to what I was doing.  In fact, coming down with last minute injury made me completely reconnect to my own battle with this illness.

At the level of fitness I had a month before my Ironman, when I was injury free and extremely healthy, I was so far out of touch with what it felt like to have Fibro.  In fact there were times during my training, I could almost no longer relate to the way Fibro had once affected my life.  At some points, I forgot what it was like to suffer with extreme pain.  I no longer remembered what it was like to never know when you would be disabled for days and when you would have to cancel your most anticipated plans.  Four years ago, when I was very ill with the disease, I never knew whether I would be able to climb a flight of stairs one day or if I would be confined to bed.  There was a high level of unpredictability associated with the onset of debilitating symptoms surrounding Fibromyalgia.  By sustaining the injuries just before my race which affected my overall performance,  it was a very good reminder of my roots, where I came from such a short time ago and the very thing I have been trying to conquer.

This is my final post before I start my Ironman 140.6 Chesapeakeman Ultra Endurance Race on Saturday, September 25, 2010.

This race is a dedication to all my fellow Fibromyalgia sufferers worldwide.  I am going to finish this 2.4 mile swim, 112 mile bike and 26 mile run with one thought in mind.  If I can complete this test of mental and physical endurance, then we as Fibro sufferers can rise up against all odds and fight to take our lives back.  We don’t have to suffer alone in the dark, misunderstood by the medical community, our family and friends for the rest of our lives.  We don’t have to let this disease define who we are.  We can join forces, help each other, and strive to regain lives that are more fulfilling and active.

5 years ago I was bedridden with my Fibromyalgia symptoms.  I was on public assistance and medicare.  I couldn’t work.  I couldn’t climb a flight of stairs.  Most of the time I needed help to go to the bathroom.  I lived like this for nearly two years.

Today I fight to stay in remission.  Its an ongoing battle, but its a battle that I am winning.  I want you to win too.  I want to devote a portion of my life to helping Fibro patients find better health.  

I would never have found my way out of the trenches of despair if it were not for my wife Lydia.  She has been with me from the very beginning.  She is my cheerleader and my coach.  I wanna give a special thanks to my parents who have helped out tremendously, especially my mom.  She is a fellow fibro patient and has gone before me to help light my path.

I wanna give a tremendous thank you to the Philadelphia Fibromyalgia and Fatigue Center of America.  If it were not for the medical prowess, the positive attitude, and the sincere caring of Dr. Garabedian, Beth, Lori, Wendy, Stephanie and Katherine I would still be bedridden.

Last I wanna thank Dr. Jacob Teitelbaum for being a pioneer and explorer in Fibromyalgia research.  He has walked the path that we now tread and from the chaos of brain fog was able to piece together a scientific protocol that works at conquering Fibro and Fatigue.

Again, thank you to you all.  You are my true heros!!!  I would not even make it to the starting line this Saturday if it were not for you.

 

What the hell is this blog gonna be about with a title like that!  You thinking that?  Just Shhhh your inner jabber jaw for one minute, have patience and you’ll get to the punchline in less than 60 secs.

Everyone knows Lyd and I just had a baby last week.  Being the airhead I am, I was so wrapped up in getting everything ready for our new little bundle of joy and in training this summer that I completely forgot how much time it takes to be a dad to a newborn and how little sleep you get.  Tack on training twice a day for an Ironman, starting back to work full time, taking on new classes, battling with overuse injuries, being a champion for a disease and – OH YEAH, struggling with the disease that I am trying so hard to advocate for.  That last part I always seem to forget…at least until enough stress arises in my life that it forces me to remember.  BTW, stress is a fibro patients worst enemy next to cheap ass health insurance companies and doctors who tell us our disease isn’t real but is psychological.

I should quit griping cause the rest of my family is doing great.  Brielle is a super good baby.  She is so sweet and easy.  Etienne is an incredible big sister.  She has made the transition from only child so gracefully thus far.   As uncoordinated as I am, my wife is like Julia Childs crossed with Martha Stewart and Mr. Rogers.  She can multitask like an octopus and powernap like a Narcoleptic.

Stephen Covey I am not.  I don’t even possess 3 of the 7 Habits of Highly Effective People, but I can say that I am starting to catch on to the whole time management thing.  Taking on four new classes this year has added so much additional prep time into my schedule.  As soon as I finish work at the university, I train, then eat, watch Brie while Lyd gets some shut eye and during that time I review math and physics stuff that I haven’t seen for 18 years.  This is usually while I am rocking the baby on my lap with my finger in her mouth and turning textbook pages with my toes.  I wake up early, study, try to train, pick up around the house and then am at work by 9 AM.  That is my day.

Like Clint Eastwood, I got the Good, the Bad and the Ugly.  So which do ya wanna here first?  Let’s try the bad.  My overuse injuries are probably not tendonitis, but a stress fracture instead.  I have an MRI tomorrow that will help to rule out the fracture believed to be seen on an Xray.  My doc says if it is a fracture, he won’t give me a cortisone shot to ease the pain during my Ironman.  He is concerned that if I have a stress fracture and he injects it, then I won’t feel any pain, run like mad during the race and possibly propagate the stress crack into a full fracture.  That part is the ugly.  So what’s the good dope on my training?  I don’t have a parasite!!! Yeah right!  No, instead the bout of food poisoning General Tso and his evil army of Salmonella gave me the night before Lyd delivered Brielle has left me with some stomach and intestinal infection called a GAS-troenteritis.  I capitalized the first part of the word because that explains the downlow on this bug.  My stomach is blown up like a beachball, I have constant cramping in my gut, and I am a major contributor right now to global warming.  My methane foot print is presently larger than all of Old MacDonald’s farm. 

Because of the possible stress fracture in my leg and my new intestinal friends, every Tom, Dick and Harry is telling me that I should throw in the towel and not do this Ironman.  People say that I have already accomplished what I set out to do and that was to Push the Envelope of what was thought physically possible for someone suffering with Fibromyalgia to endure.  Kindly, I am told how proud everyone is of me and how amazed they are that I stuck with my plan through thick and thin.  I am grateful for everyone’s kind words, but in my head this sounds an awful lot like “hey Jase, you did so well, let this race go, its the thought that counts.”

As my closest friends and wife know, I have a little pet peeve with this saying. The “thought that counts” doesn’t feed starving kids in Africa.  It doesn’t win wars or keep our liberty secure.  It doen’t make disease go away, nor does  “The thought that counts” pay for something that someone needs in hard cash.  I think this cliched out phrase is something made up to make someone feel better about themselves and their failure to bring about results.

C’est la vie is not my M.O. in regards to this Ironman.  I trained too hard and too long this year without any major relapse to quit now.  210 days and thousands of hours of training aren’t gonna be thrown away by two more little speedbumps on this crazy dirt road I am following.  I have built up an amazing endurance for someone with Fibro.  However, it has been done out of the public eye and in the dark with no one watching.  It is not until race day that I get to share my hard work as hope for others suffering with Fibromyalgia.  On September 25, 2010 I can publicly demonstrate what is possible for patients with Fibro to accomplish by completing the Ultra Distance Chesapeakeman in Cambrige, Maryland.

So what’s the plan?  Fracture or no fracture,  I am competing next weekend! I am gonna finish this damn thing whether I have to march, walk or use a cane to do it.  Next Saturday, the gun goes off at 7 AM.  From that time I have 17 hours to complete 140.6 miles of swimming, biking and running before the event times out.  Call me overly optimistic or completely out of my gourd, I think that I am gonna do it!!!

So the question is….do you wanna be another Mother telling me that I should listen to my body and quit now before I get seriously hurt, or do you wanna be a believer and support me by sending me your positive vibrations next Saturday morning?

Great Distractions!

Posted: September 9, 2010 in Uncategorized

Hey everyone.  Sorry I have been slack on blogging lately.

My second daughter was born on Labor day.  Her name is Brielle Matisse Moore.  She was 8lbs 8oz.  The labor went fantastic.  The epidural helped Lyd tremendously.  She pushed for about an hour and we had our little monster. 

It was funny, Lyd kept telling me to take my sleeping medication on Sunday night.  I kept refusing until about 2:30 AM when it seemed like her contractions were decreasing.  Of course, just when my drugs started kicking in, I could see Lyd’s contractions getting worse.  That was when I surrendered to the meds and passed out.

Two hours later I was being woken up by my parents.  They basically shoved me in the car and drove us to the hospital. 

My first introduction to the delivering staff was as a puddle on the hospital floor.  It took until about 8 AM until I could function and sit in a chair without slumping onto the floor. 

By about noon, Brielle was here.  There were no complications and nothing noteworthy. 

Keeping our fingers crossed, Brielle seems to be much calmer and quieter than Etienne.  She sleeps well and feeds well.

In addition to the new addition, I am now back to work full time, so my training and fibromyalgia advocacy has taken a backburner.  I am hoping all the hard work this summer, sticks with me for the next two weeks until my race.  I am REALLY struggling with the motivation and time to train.

I am gonna have to get a cortisone shot or two in order to finish my marathon in the Ironman.  My IT band at my knees and my calves have significant overuse tendonitis and are extremely painful.

On top of that, I think I picked up a parasite by swimming too much open water.  I have got the runs like there is no tomorrow and my stomach is constantly bloated, distended and painful.

I am looking forward to this season being over so that I can take care of my body and my family better.

The night that I was formally introduced to the Fatigue and Fibromyagia center of Philly, I met a Dr. name Joeseph Garabedian and two nurses Wendy and Lori.  Everyone was very friendly and the clinic felt extremely homey and comfortable.  It was the complete antithesis of most doctors offices.  It was not sterile, nor was it overly formal.  It had more the feel of a coffee shop than it did a medical office building. 

In the room where presentations were held, there were at least six lazyboy reclining chairs.  I later learned that that was where IV drip Myer’s Cocktails were given to patients to jumpstart their body’s back to health.  There were books lining bookshelves, a television, and plenty of magazines in the room.   Overall, it had a nice feel.

Dr. Garabedian spoke that night on what Fibromyalgia and Chronic Fatigue Syndrome were.  He explained how they were related and that they both came on after the body had gone through an incredible period of stress.  He explained that this stress may vary from a car accident, a terrible Mono infection- even the loss of a loved one. 

Dr G. –as everyone at the clinic called him, described the symptoms that one may encounter while experiencing the diseases.  He said that the disease affected three primary areas of the body; the hypothalamic, pituitary and adrenal glands.   Once the hypothalamic gland shut down due to some major stressor in the body or mind, the control of hormones circulating around the body goes out of whack   After this deregulation occurs it sets the person up for unrestful sleep, susceptibility to opportunistic infections, brain fog, bizzare central nervous system CNS) phenomenon and muscle skeletal pain.

His lecture was extremely thorough and understandable by the layperson.  For some odd reason Dr. G. felt like the grandfather I never had.  He was extremely compassionate and sincerely seemed to be out for everyone’s best interest.  He was also extremely passionate about his work.  You could hear it in his voice when he spoke and see it in his facial expressions as well. (For those of you who know Dr. G, you know what I mean by his body language and facial expression as well as the change in the inflection of his voice when he starts talking on a subject he researches!) 

In his lecture, the piece that I was focusing on was what are the chances for recovery.  Previous to his lecture, I had heard such depressing facts as only 10% of the people infected with Fibro recover.  I was astounded that he said to us that using the protocol that they follow, they have about a 90% success rate with getting patients to regain their old lives back.

Once I heard that, I was ready to sign up!!!  I was amped.  I felt as though 10 tons had been lifted off my shoulder. 

In fact I was so busy daydreaming again about future adventures, that I missed the part that he said it takes and average of 9 months after you get back to sleeping that you start feeling completely better.  Oops!  My wife filled me in on that on the way home in the car.  Like most westerners, I just wanted to take a magic pill and get the healing underway.  Unfortunately, as I later learned their is no such thing as instant gratification with this disease!!! 

I signed up for my first appointment the night of the presentation.  The day I arrived to meet with Dr. G. I was asked to get blood drawn at the laboratory on premise.  The lab folks were worse than vampires.  They literally drew twenty nine vials of blood.  I don’ t have any clue as to how I could stand up after a third of my blood volume was being neatly labeled and packed away in bags for delivery to headquarters.

In my first appointment with Dr. Garabedian he introduced himself and we got to know each other a bit more.  He found out about my background so as where to look for issues causing my fibro.  After learning of my travels he prescribed more tests for a parasitic infection.  He explained the protocol to me a little more in depth that the corporation uses to return their patients to health.  He explained exactly what he was looking for as to trends in my hormone levels, opportunistic infections that can hang around and continually re-infect patients with compromised immune systems, patterns of sleep disturbance that can prevent the body from healing.

At our second visit, he said I was the prototypical patient.  My hormones like thyroid, cortisol, testosterone, dhea, and pregnenolone were all low. I had 7 confirmed parasites, a mycoplasma infection, a recent Epstein-Barr infection, and a systemic fungal infection.   He said that my fibrinigen level was elevated preventing me from absorbing nutrients efficiently.  On top of that, a sleep study Dr. G prescribed showed that I have alpha wave intrusions in my delta sleep…a key feature of the Fibro patients brain. This indicated the reason I was not getting restorative sleep and was suffering with such muscle and joint pains.

Surprisingly, I was not unhappy after hearing how my body was such a train wreck.  The reason why….I didn’ t have AIDS, Rheumatoid Athritis, Lupus or some other life threatening disease that could shorten my lifespan or completely cripple me.  In fact, I found out on my second visit that as bad as we hurt with fibro pains and as unsettling as the CNS symptoms and brain fog can be, Fibromyalgia does not do irreversible damage to our system.  Those facts were music to my ears.

I had been now to two appointments with Dr. G, and  I had the results of my labwork and sleep study comeback.  No tremendously bad news wrecked my future plans.  I was extremely hopeful of getting my life back.  I couldn’t wait to get the ball rolling and the treatment protocol underway. 

I was explaining to the owners of the gym Muscle, Inc.,(where I am a member), that I have Fibromyalgia.  They knew previously through our conversations in the past that I was an endurance athlete, however, they never knew that I suffered with so much muscle and joint pains.

Surprisingly, I didn’t have to explain what fibro was to them.  In fact, before I could finish explaining where I get the majority of my pain, the owner handed me an article on the benefits of spending time in a far infrared sauna. 

I was familiar with traditional dry cedar saunas and steam baths from spending so much time in Europe, but I had never heard of an infrared sauna.  In fact, I knew that Muscle had a sauna, but i never paid much attention to it, because it is off in a remote corner of the locker room that is out of site.  On top of that I never knew that it was anything different than your typical dry cedar unit.

From reading the article, I learned that this type of sauna at Muscle uses a small spectrum of electromagnetic radiation that can safely penetrate through the skin and deep into muscle tissue.   Supposedly, the infrared simulates a fever which brings toxins from deep within your muscles up through the fat layer and out to the environment through your skin via sweat.

I started my first treatment last week.  I can honestly say, I felt extremely relaxed and my muscles felt like jello for a few hours after my first experience.  This was a pleasant hiatus from the usual tight bands and painful knots that I usually feel.

Today, August 30, was my second treatment and again I have received significant pain relief in such a short period of time.

I am excited and hopeful that by using the far infrared sauna 3-4 times per week for a half and hour at a clip, I may see some real benefit from my fibro.

Here is a video from inside the sauna where I am sweating like a pig at 126 degrees.  Enjoy.

Pushing the Envelope is starting to grow by leaps and bounds.  Unfortunately, Microsoft Live Spaces is not growing at the same rate. 

Recently, Microsoft has been trimming down the functionality available to its bloggers.  There are certain types of media that I cannot host correctly.  I cannot run logistical diagnostics to track my guests.  In fact visitors have to have a Windows Live ID to subscribe to my blog and even leave comments.  The communication between Microsoft online web storage and Live Spaces is not convenient.

As a result, I will be looking to move Pushing the Envelope to another host like Blogger, WordPress or Typepad. 

This will not occur immediately, but sometime after my racing season is over.

Thanks for you patience.

Jase Moore