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Published 05 February 2017

Pain, Pain, Go Away! (Month +8)

Today is my eighth month anniversary of getting my stem cells back. Boy, as slow as things seem to move, time also flies.

I've been doing photography for the Arlington Theatre during 2017 Santa Barbara International Film Festival, and on Wednesday, I saw the opening night film, “Charged." This was quite the human-triumph-over-adversity documentary film and a kick in the pants for me to get over dwelling on my own problems. This is the story of Edwardo Garcia, who got shocked nearly to death with 2400 volts, who spent months in an ICU, only to discover he also had testicular cancer. Through extreme surgeries, chemotherapy and years of physical therapy, he managed to pull through, albeit now with a prosthetic arm. 

Standing right in front of me on the red carpet, I saw this handsome, young man smiling from ear-to-ear. He was fit, happy and forward-looking. How did Garcia do it? The man is an inspiration. The bottom line: never give up!

Back up ten days. I was having lunch with my attorney. Lunch went much longer than I anticipated, and I don’t often eat out, so I was like a fish out of water. I was squirming my way through a pain crises. I used a little MMJ. Suddenly, I realized there was no pain, whatsoever. I was so confused that I wasn’t sure if I was dreaming. You see, I had recently increased my daily dose of carbamazepine (1100 mg), which can cause confusion. But that’s not how these crises work. Once started, they don’t just shut off like a spigot stopping water.

Three days later, I had still not experienced any sharp pain. None. What the hell was going on? I hear this is sometimes how these things work after HSCT. One moment, everything changes. On the fourth day, I had a two-day setback, but then there was another three-day pain pause. I’ve since been living a new “normal,” one with less than half of my previous pain!

To be honest, through all my superficial optimism, deep down inside, I had been terrified that maybe the stem cell transplant was not going to address my pain. After all, there’s no guarantees. And it had been quite a long time with very little progress. Forget the walking disability. If I could never get the pain under control, nothing else would matter. It was like a Chinese water torture. Eventually, I thought, I was going to fold.

So, now there’s new hope. And it’s significant.

Dr. Ruíz advised that the majority of the disability reversal takes place between months +9 and +12. Now, this makes me hugely optimistic. Stay tuned for more to come!

Important Timeframes

  • My Stem Cell Transplant Date: June 5th, 2016
  • Treatment duration: 4 weeks
  • Typical onset of disability reversal: +9 months
  • Typical complete recovery from procedure: +1 to +2 years
  • Typical maximum reversal of disability: +2 years

Disclaimer

I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.

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