Musashi Mix Inq

Transition Day – 2016

Posted on November 11, 2016

David to DanielleToday marks my one year journey into HRT.

In truth, the last three years have felt like one huge transition for me. I could only start the journey in earnest a year ago because, before then, I just didn't have the spoons for such an adventure. I am privileged to be living at the right time in history when there are solutions for the problems that have tried to tear me down for as long as I can remember.

Little meOne of my most vivid early memories is gender dysphoria. I was 4 years old at the JCC preschool where my best friend and I would always play dress-up together. One day she insisted we get married. Sounded like a plan. But she took the dress and handed me the suit, tie, and hat. After putting them on, I looked in the mirror and was knocked back to see a desperate emptiness where my eyes used to be.

My chronic pain condition began at age 13, just as my body started committing hard to male puberty. Frustratingly, there was no clear cause for my severe constant neck pain. Testosterone powered rage fueled a spiraling fire of dysphoria, shame, fear, confusion, and doubt. None of my doctors and specialist could properly treat or even diagnose my "phantom pain". A war on two fronts.

judo jr. national champion, 1996Growing up as a judoka, my Sensei always told me that I was too strong. In truth, the only way I could cope with the physical pain and dysphoria was to push myself harder. If no one could help me, I resolved to be my own champion. Sadly some battles just can't be won alone.

Along the way, some part of me resigned to the fact that if I couldn't win, I simply had to manage the best I could— brick by brick and day by day. School. Judo. Family. Art. Friendship. Love. But a body can only handle so much pressure before it starts to break down.

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For the next 17 years, I did what I had to do to:

Winter, 2013

I survived.

Then at age 30, the miracle happened: I got my diagnosis (cervical facet syndrome) and soon after the treatment (radio frequency ablation). Only then did I finally open up to the world of possibility that had been waiting for me. On the eve of my 32nd year I began my medical transition.

And so with access to the right medicine, counseling, advocacy, a supportive family, and growing community, I continue to overcome these challenges on the path to living life on my terms. No more closets, manageable pain levels, and very few sleepless nights. There's no feeling quite like being able to finally start seeing myself in the mirror.

2015-2016

I'm one of the lucky ones.

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p.s. I wrote this before 11/9/16. I wrote this for myself as a marker in the road. I wrote this for anyone who has ever felt lost. Just so there's no confusion: Always forward. Forward always.

Filed under: Blog, identity, new half, Pain, Q, RFA 1 Comment

Where Do We Go From Here? REbirthday the 3rd

Posted on February 12, 2016

PAL 230

selfie 2016Hello, friends. It’s been a while 🙂 It’s hard to imagine, but I used to blog about chronic pain every week as a means of trying to figure this all out and share what I felt in a way I never had before. All those years bottled up and here I was just trying to find the language of myself. Spoons. Mana. Just keep swimming. However small these exercises seemed at the time, they laid the groundwork for the strength it took for action and ultimate victory. The past three years have been unlike anything before and I’m working hard on learning to find the adventure in it.

I never thought re-framing my perspective in and of itself would be my biggest struggle.

Before I could get better, I needed a story. Starting the blog in 2010, I created a fresh life-narrative to get flow. Flow gave me the momentum to stand. From there it was just one step above the last, gradually climbing up higher and higher. And then, after all the struggle to find the tools of stability, control, freedom, bravery, the right doctors and the right treatment - all in pursuit of this life experience everyone else seemed to be having - I abruptly reached the summit.

I didn’t even know I was on an adventure.

But enough about before. At a certain point in the last year or so, I realized that I was in an epilogue. Not that I didn’t deserve the respite, but I came to accept that it was time for something new. A journey initiated by me. Not some malady thrust upon me or a dire situation that I found myself in. Now that I triumphed and possessed some basic pieces, what did I want to do wth my life?

No pressure 😉

I started weekly counseling at the beginning of 2015. It took longer than I’d like to admit to get me there. Despite the initial reluctance, it has been overwhelmingly worth it. I never really considered that an ongoing, long, intentional conversation about yourself could actually change how you think and feel. With enough work, this can eventually change how you live.

One of the hardest things I’ve had to accept is that I’ve missed out on a lot, and that horrifyingly no one noticed. Fear of missing out in reverse. Not regret exactly, but learning that there was more going on than I could have ever actually experienced at the time. For example: having emotions is not only a privilege but generally everyone just walks around having them. Mind. Blown. How do you get thru a whole day while feeling… things? How do you even get anything done that way when everything around and inside of you is screaming in HD THX Technicolor madness? Nothing is mind dullingly simple anymore, for better or for worse.

So now when I challenge myself to do something basic yet more ambitious than I ever used to, I start by grabbing the simple tools I’d improvised over the years that worked so well for so long. I set the goal. I stare it down, but it just seems so impossibly far away. So I panic. I freeze. I feel guilty. I withdraw. I’ve given myself this gift of life, but how do I even?

Life is strange. Feeling is strange. When we read existentialism in high school, I basically went, “ Yeah, that sounds pretty accurate…” not realizing that most people weren’t literally stuck in an irrational yet totally tangible labyrinth of such depth and challenge- or that there was even a way out. That there was something more.

Now I try to embrace the challenge; remembering in these tough moments that “this is an adventure”. Trying is an adventure. Failure is an adventure.

Aside from the day to day challenges and some residual pain, how do you even know where to begin? I’m trying to break out of this prisoner’s mentality. I am free to choose and I’m trying not to get overwhelmed by that. Freedom one day at a time.

Somedays I wake up and feel like I’m falling. I’m trying to remember that a little plastic spaceman once taught me that, “flying is just falling with style”.

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P.S. I just picked up my guitar and started playing again after years of it sitting dormant in its case. With a little practice and some new callouses, I recorded a couple songs I wrote back when I was 17. It feels so good to play again 🙂

Filed under: Blog, Music, Pain, RFA No Comments

Palliativity 228: Return of the Legend

Posted on April 17, 2014

fight face

Aside from creating art, one of the biggest parts of my life has always been judo. I started at the age of 5 at Menomonee Club under the teaching of my great-uncle and world renowned sensei Henry "Hank" Okamura. Uncle Henry and his friends brought judo from the West Coast to Chicago via the Japanese American Internment during WWII. He recognized in me early on the potential of becoming a champion. I was indeed a very successful junior competitor, taking multiple national titles and fighting all over the country.

All of this success came to a halt in 1997 after my shoulder was dislocated in an international tournament at the age of 12. I wouldn't have the corrective surgery until a year later. It was after the rehab from this injury when my chronic neck pain began and would continue to get worse over time, remaining undiagnosed until late 2012. Throughout this period of my life, I continued to teach regularly and compete on and off despite the pain.

The video below from 2007 at age 23, experiencing constant severe neck pain and weighing in at 266 lbs, I participated in what I thought would be my final judo match ever:

Thankfully over the past year and a half, everything changed.

Last Saturday, seven years later, over 60 lbs lighter and pain free, I realized a dream I never thought possible:

After taking Silver at the Illinois State Championships, I can't wait til my next fight. It's good to be back.

silver

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Filed under: Blog, Pain, RFA 2 Comments

Palliativity 223: Re-Birthday

Posted on February 12, 2014

The long bleak Chicago winter drags on, but things are looking brighter than ever.

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How am I doing with my chronic pain you ask?

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Pretty awesomely 🙂

My body was once an unsustainable mess of twisted nerves, atrophied muscles and overcompensations.

The whole system was barely held together with medication, unhealthy habits and long painful nights.

This day marks my first Re-Birthday— RFA, the first win in the battle to end 15 years of chronic pain.

There have been many ups and downs since the original procedure and only now can I really appreciate the struggle of it all. First we burnt out the nerves that were sending false pain signals. Then we dropped all the meds. At this point I began experiencing an all new kind of pain- the legitimate kind. My body had been doing the best that it could to allow for minimal basic life stuff for over a decade. Suddenly I was tasking it to take on the world. With difficulty, I accepted that the fight wasn't over just yet. It felt like climbing to the top of a mountain only to realize that there was quite a bit more to go. I bared down and started rebuilding.

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This past year, I set about the long and exhausting process of reprogramming the entire structure of my upper body. The frayed nerves in my spine had forced all of the muscles from the back of my skull, down through my neck and upper back to do everything wrong. Imagine the agony involved if the muscles on the side of your neck just decided one day to be solely responsible for supporting the entire weight of your arms ALL DAY LONG. I used to call that "my life".

Retraining my body felt like recovering from a stroke. I was attempting to build muscle mass which essentially had no connection to my brain. But once I got things rolling, the pain decreased as my strength and endurance grew exponentially. Months of constant rehab and exercise have certainly paid off. The photos above and below illustrate what a year of hard work and dedication can bring.

back-flex

It may be a rough winter, but it's a sunshine day in my mind.

Winter bright

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Filed under: Pain, RFA No Comments

Palliativity 198: vampire blues

Posted on June 12, 2013

RFA PART II - Recovery Journal

Although this wasn't my first time through radio frequency ablation, the recovery experience has been quite different. My first time back in February was for the left side of my cervical spine which was far more damaged. Following the procedure, my pain levels went wild and it was a bit rough even by my standards. Chronic pain typically flows with agonizing slowness in terms of changing location and intensity and the time-scale is in weeks. This was more like a lightning storm; sharp, erratic and unpredictable and changing by the hour.

Burning out the nerves was not a light decision. The healing process isn't supposed to be easy nor smooth. My body is trying to cope with traumatic damage and there is no way to explain to it that this is all part of a planFollowing all this, the relief I gained after the first week was beyond all expectations.

#WORTH IT

Last week, I had RFA done on my right side in order to finish the job. The night before the procedure, I was spiking level 8 pain. Even with vicodin and lidocaine I slept about 2 hours total, watching the sun rise on yet another step in this journey. On Wednesday morning I got to the doctors office early, and they took me to twilight.

  1. Wednesday: pain level 3. Right side injection site sore. Meds feel good.
  2. Thursday: pain level 5. Left side cramps up. Trauma sustained but nerves are confused.
  3. Friday: pain level 6. Left side gets worse. Right side heals up.
  4. Saturday: pain level 5. Left stops, right side pain returns.
  5. Sunday: pain level 7. Right side cramping near scapula. Feels like a burning knife in my back. Nausea begins. Lots of meds and drinking. Sleep one hour that night.
  6. Monday: pain level 4. Stabbing turns to stiffness on right. Nausea less by evening.
  7. Tuesday: pain level 3. Rehab and massage. Left side cramping. Nausea gone.
  8. Wednesday: pain level 2. Stiff on both sides. Had my first night's sleep in bed versus the easy chair since Sunday.

A strange ride indeed and it's not quite over yet. They burned a few pain nerves in my spine and the whole system went crazy again. Having quit taking neuropathics and muscle relaxants, my body is still struggling to find an equilibrium between phantom pain and accepting the gentle and long-deserved void that remains… also known as just plain awesomeness. I've had to remember the strength and tricks that held me together under this pain for so long. A week or so of crazy aside, I know that soon I'll be that much closer to who I am supposed to be.

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Palliativity 188: withdrawal

Posted on March 21, 2013

9 years of pills. 5 days of torment. Withdrawl is a bitch.

 300mg Lyrica- twice daily. 6570 pills later, here I am.

In all that time not a single dose missed or else "death by seizures", or so I thought.

Part of the reason that my chronic pain treatment took so long to make progress is that every doctor and specialist over my 15 years in treatment wanted to be the hero. I didn't even have a diagnosis until 5 months ago. Back in 2004, my former general physician saw that a shiny new anti-epileptic/ fibromyalgia med was on it's way over from the EU. He thought that it might cure my condition despite the fact that I had neither of those problems. It did significantly cut down the number of constant stabbing muscle spasms to only a handful, but it was just another palliative thrown on the pile with the others.

The ensuing years have been good times for my liver and my insurance premiums.

As of today, it's been 5 weeks since my RFA procedure for Cervical Facet Syndrome. Last week's follow-up with my doc was amazing. He thought I'd only get a 50-60% positive effect from the procedure. When I told him that it's more like 95%, he geeked-out. He then told me to stop taking Lyrica, cold-turkey—

But, what about the aforementioned "death by seizures"?

"Did you have a seizure disorder before?"

No.

"Then you won't have any. Just stop taking it. I'm gonna go call your general doc to tell him the good news!"

[ Doctor Exits office, stage-left ]

Goddamnit, medicine…

• • •

Withdrawal is a bitch. Imagine 5 days of nausea, jitters, headaches, insomnia and random muscle spasms. My condition went bad for the first time since the procedure. Cold fear gripped my heart once again, but then I remembered. I'm still getting used to this newfound optimism that I would get better, and that I did. Here I am. Better. Stronger. Healthier. Me.

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Filed under: Blog, identity, Pain, RFA No Comments