Complex Regional Pain Syndrome

Getting a Diagnosis Part III of III

Getting a Diagnosis Part III of III

Days 49-51: February 21st – 23rd, 2017 

Location: Johns Hopkins University Hospital – Baltimore, MD

 

This blog post is the third of a three-part series in which I received my diagnosis.

You can read Part I, here.

You can read part II, here.

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Day 409: Catching Up After a Hiatus

Day 409: Catching Up After a Hiatus

Day 409: February 16, 2018
Location: Washington, DC

It’s been a few months since I last let the world into my life via this blog. Back in November of 2017, I promised to never let my writing get away from me again. I didn’t hold myself accountable and for that I apologize to all of you and to me.

Since my last post, I’ve been working through change on many fronts. Adjectives that best describe the varying changes I’ve been making include challenging, exciting, frightening, hopeful, and stressful. The adjectives often turn into human emotions and being that as it may, I quite simply haven’t found the time or the words to write with the degree of openness and passion in my prose. That’s beginning to change now as I’m settling into some of the elements of change.

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Day 307 – I’m On A Boat

Day 307 – I’m On A Boat

Date: November 6, 2017

Location: The Atlantic Ocean

 

“Awe $#!+, get your towels ready, it’s about to go down…

…I’m on a boat. I’m on a boat. Everybody look at me because I’m sailing on a boat”…

“…Hey ma, if you could see me now, arms spread wide on the starboard bow, gonna fly this boat to the moon somehow, like Kevin Garnett, anything is possible!!!!!!”

“I’m On A Boat” – The Lonely Island ft. T-Pain

 

Slapstick humor? Cheesy song lyrics? Inspirational message? Sorta all three? Thank comedic actor and SNL alum, Andy Samberg, for the “genius” behind this song. Thank my in-laws for helping make the chorus from Samberg’s song a reality for Crissy and me by taking us on a chartered yachting trip to The Bahamas while we visited them in Miami.

 

Jason, you’re a jerk for telling us you just went yachting in November. Braggadocios behavior is not the message I’m looking to convey. Ok then Jason, why are you telling us you went yachting in early November? Everything my wife and I experienced while on this yacht trip can serve a vessel for future growth and hope for all CRPS warriors and chronic pain sufferers.

 

So you want to hear about the experience? It was truly amazing in so many ways. Previous to this trip, I had never been yachting. I’ve been on deep sea fishing boats and countless power boats, but never out on the water with a boat like this. Our boat, the Maylen, was an 86 foot Cerri yacht. Cerri is a high-end Italian brand of yachts and the Maylen is the only Cerri in the U.S. The Maylen is of course specked out to the owner’s luxurious taste. With a cruising speed of 46 knots per hour, the Maylen can reach The Bahamas in under 90 minutes with most weather conditions. That’s a speed of roughly 50mph in your car. Before long, we left South Beach in our wake and could only see ocean blue for 16 miles in every 360 degree direction.

 

Our family adventure that began in South Beach and made its first stop in the Bahamian waters of Honeymoon Harbor on Gun Cay before we dropped anchor. Honeymoon Harbor is home to an untouched beach with beautiful white sand, the Sapona shipwreck from the Prohibition Era (more on that to come), thousands of species of fish, manta rays you can feed and pet, and docile sharks you can also touch (the not so docile sharks lurk nearby). The clear blue water here allowed you to see everything around you. It was easily some of the prettiest water I’ve ever seen. We could see through to the ocean floor even in spots 20 feet beneath you. The Maylen was loaded with toys for us to enjoy the bath water temperature water and it didn’t take long for me to seek out some of the thrills.

CRPS has limited my wife and me all of 2017. Throughout the course of this year, Crissy has reminded me that as I get healthier I must live life to its fullest. With that on mind, we jumped onto the Seadoo jetski/waverunner to run free on the open waters of the Atlantic that resembled a lake more than an ocean. We darted across the pristine waters of Honeymoon Harbor to the Sapona shipwreck to scope out snorkeling possibilities. I was driving our rocket on water at over 7,000 rpms and probably at around 45mph. We were gliding across the calm waters as if the surface was a clear glass allowing us to see the sea life beneath us. Speaking for my wife and me, we felt more free in these moments than at any point since my CRPS symptoms revealed themselves. We didn’t feel tied to a reduced life with limited excitement. We didn’t feel tethered to restrictions forced by either disability or medical advisement. With the sun at our backs, wind in our faces, and the pristine water surrounding us, we both felt alive again. Over and over again, I screamed “I love life” and Crissy did the same. You don’t know how many times the disabling physical, mental, and emotional pain of CRPS has made me think, feel, and say differently throughout the course of this rough year. To be able to do this was liberating.

After scouting out the Sapona, we went to Honeymoon Harbor Beach to swim with manta rays and nurse sharks. I will not lie, it took me a little bit to feel comfortable with 2 sharks and what seemed like 50 manta rays surrounding us in the shallow waters. The late Steve Irwin’s untimely death ran across my mind. I had come too far in my recovery to risk injury or death by a manta ray. Our charter host helped us get comfortable with the predators around us. He taught us how to pet the manta rays in a way where they would not feel threatened and sting with their barbs. I ran my hand down the backs of so many manta rays. It was incredible to see how friendly they are as long as you did not stand over them. We fed squid to the manta rays from the palms our own hands. I even fed some with my left hand – the CRPS hand. Manta rays have a gentle bite and from what I could tell they don’t have teeth. Manta rays tend to swarm you when you have some squid in your hands. I’m not sure if they always feed in schools or not. It felt like they either always eat in schools or were all starving. The manta rays also seemed to feel the pulses of my spinal cord stimulator (SCS) kinda like other marine life use sonar. They followed me around in the water long after we ran out of squid. Our charter host pointed out in 25 years of time at Honeymoon Harbor he had never seen manta rays follow someone without food quite like they did with me hence we deduced they must’ve liked my stimulator. I guess I can call that a gift? The nurse sharks mostly kept to themselves with a little distance between them and the manta rays. Like the rays, they’re toothless so there wasn’t much to fear with these two 4-foot sharks. They didn’t stay long. Maybe they don’t like squid or disliked my SCS.

Racing along on the jet ski wasn’t complete. There is a way my wife likes me to drive on them and then there is the thrill seeker in me who likes to drive aggressively. It takes plenty of wrist, hand, and shoulder strength to drive a jet ski the way I like to. Sharp turns that spray water into the air and leave wake that I can then jump is the way I like to roll. 360s at high speeds where the nose of the personal watercraft dips into the water are my preferred ways to steer. I was a little nervous to give it a try with 360s. I didn’t know if my wrist could hold up. My first attempt at a 360 was with a slower speed and more like a 180 or 270. Pain in my wrist spiked up a bit beyond recent pain from exercises. Ok, what to do next? Continue forward to my goal of nailing some 360s or back off? I already told you how I screamed, “I love life” on my previous jet ski ride. My decision was easy. Keep moving forward and give it a go. 360s it is. I did the first handful of 360s at around 25mph. My confidence grew, as did the pain. Mind over matter, right? I gave myself a long stretch to get the speed up to around 45mph before trying the next 360. I completed the 360 and then a jump through the wake. Man, did it hurt? Completing the goal helped override the pain. Adrenaline and endorphins were pumping. My dopamine level was probably off the charts. Thus, my adventure had to continue over at the Sapona shipwreck.

 

Crissy and I went snorkeling on our honeymoon in some very rough water not conducive to seeing fish. Those conditions were more suitable for drinking on the sea. Sapona offered a chance to redeem us, or at least me. We went back to Sapona with our charter host on the dingy. Crissy was supposed to join me in the water to swim through the Sapona wreckage together though snorkel kits lacked two actual snorkels. There was the free dive option though neither of us ever tried the ultimate swimming thrill previously and it probably wasn’t the best time to begin so with my limited ability to swim. My wife sacrificed for me so I could continue to conquer some of my fears of reducing my life because of disability. Her generosity should not be overlooked.

Sapona is actually a Prohibition Era ship that was owned and used by the Kennedy family. Yes, the American royalty family used the ship for bootlegging. I don’t remember if I learned this fact in school or not. Since the ship wrecked, concrete has been poured onto ship and the US Navy has used the ship as target practice. Beneath the surface, fish have flourished on the barnacles and coral grow on the ship. I say barracudas, sergeant majors, clown fish, bonitas, bonefish, and many, many more fish I couldn’t identify. Swimming with one arm was easier than I thought. It didn’t hold me back from swimming inside the shipwreck to snorkel and see what was around. My day was complete. I had accomplished all of the goals and thrills I set out to do once boarding the Maylen.

Following our departure from the Sapona, we went to port on the Bahamian island of Bimini. Our stay in Bimini was brief as we had to head back to Miami the next day. While brief, Bimini was impressionable for the everyday struggle it’s residents have. Poverty is as or more abundant on the island than this pile of conch shells and it served as a reminder to me I’m not the only person battling for a better life.

Experiencing The Bahamas and nature in its pure beauty was exhilarating. If you had asked me if this could’ve been possible before my SCS implant, I would’ve quickly answered with no or not any time soon. First, I probably could not have made the flight or the boat ride. I certainly couldn’t have tolerated my left arm in the water. Warm and cold water alike caused immense pain. For several months, I mostly felt a burning sensation in my entire left hand and wrist any time I showered, washed my hands, or attempted to swim a few times. To be fortunate enough to enjoy this experience in some ways felt miraculous. It didn’t come by SCS alone. The SCS is one huge tool I’ve deployed though it has also come with the fruits of my labor in occupational and mental therapy. I’ve put in countless hours to get to this point. Feeling this high on life hasn’t come easy. Perhaps what makes this experience so memorable and particularly special is that I remind myself both how much I lost this year and the fact that many of my fellow CRPS warriors may never improve to this point. The latter is different than saying my fellow CRPS warriors will not improve to have experiences like this. I know all of you can get better and truly hope 100% of you will get better. It’s more than wanting “it,” you must own “it.” Trust the guardrails medical professionals give you and out in the work. You must believe if you do, you’ll realize a positive outcome. And always keep moving. Remember, much like the lyrics in the aforementioned song, anything is possible!

 

“…like Kevin Garnett, anything is possible!!!!!!”

– “I’m on a Boat” by The Lonely Island ft. T-Pain

Realizing my goal of traveling again with my wife serves to only fuel my fire to heal and reach both remission and a 100% recovery. I have plenty of hard work ahead and I hope to achieve both statuses in the next 6-12 months; the timeline my surgeon told me expect just a few days before our trip. I’ll get there. I know it.

 

By the way, this Corona failed to get it’s lime, but you get the point.

 

Beat CRPS!

Jason

 

P.S. – Check out the gallery with more pictures from the yacht trip.

[Best_Wordpress_Gallery id=”8″ gal_title=”The Bahamas”]

 

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