April 28, 2012
What a whirlwind week it has been! All of the activity has hit me, and I am beyond exhausted, but I would like to share all of my news with you.
This past Monday I had my long-awaited appointment with Dr. Schwartzman, a leading RSD expert in Philadelphia who specializes in ketamine infusions.
Having lived with this disorder so long, the definition of RSD is permanently engraved into my brain. But it is one of those things that isn't quite common knowledge in the non-medical demographic. So, just a review: Reflex Sympathetic Dystrophy (RSD), also called Complex Regional Pain Syndrome (CRPS), is a chronic neurological pain condition, often triggered by an injury, illness, infection, or some other form of strain on the body. The nervous system malfunctions, allowing nerves to continually misfire pain signals to the brain long after the initial trauma has subsided. It primarily affects the extremities, but can spread to internal organs. This can cause many symptoms, including constant intense pain, extreme sensitivity to the lightest touch, dystonia, skin color changes, muscle spasms, and paralysis. My first signs of RSD appeared in my throat following a staph infection. It then proliferated after an ankle sprain, and has gradually progressed ever since.
Now, back to my visit with Dr. Schwartzman. Whenever he walked into the room for my exam, I could tell he really understood the pain I feel, something that most doctors, although some may be sympathetic, just can't fully grasp. While my pain is the worst in my stomach, back, head, and elbow, I am hurting from head to toe. Based on the way that my pain presents itself, Dr. Schwartzman affirmed that I have full-body RSD. He said it is highly possible that my RSD is behind many of my problems, including my Gastroparesis and daily fevers.
I approached this appointment fully prepared to hear that Dr. Schwartzman was not comfortable treating me with ketamine due to my history of paralysis with anesthesia. What I was not prepared for was the news that I did hear: The doctor believes that my greatest hope of getting better lies in traveling to Mexico in order to undergo a ketamine-induced coma.
Whoa! Probably the exact opposite of what I was expecting from this appointment. Over the years I have learned bits and pieces about ketamine comas, a treatment not yet legal in the United States. It is reserved for only the most severe cases of RSD. What do you think? Sounds pretty radical, huh? Kind of crazy? Really scary? That's what I would be thinking, too. But, while certainly not without risk, this treatment has been nothing short of miraculous for some people.
I have been wrestling with how best to explain how a ketamine coma works... Ketamine is a dissociative anesthetic that has been found to help reset the faulty nervous system of RSD patients, abating the continuous cycle of pain signals. But it might help you to better understand if you watch these videos of a remarkable young lady who underwent the coma herself. Jessica and her mom have kept a blog the past few years. Her story is so similar to my own... But if you watch the first video, you MUST watch the follow-up interview. Her progress is incredible:
I always do my best to keep a smile on my face and strive to remain as active as possible. Because of this, I feel that often times doctors unknowingly underestimate my pain. Honestly, I was a bit relieved that Dr. Schwartzman recognized just how much pain I really feel... He wouldn't propose this treatment if my RSD was not very severe and complicated. While I have always had faith that God is utilizing my unique circumstances in order to do something good, it has been a very long time since I have seen a glimmer of hope toward recovery by means of any particular treatment. I will be returning to Philadelphia in August for testing. Unless the results indicate that I am not a candidate, we will schedule a trial low-dose ketamine infusion to take place in the intensive care unit in Philadelphia. If this goes well, the coma will be further discussed. There are still many questions that need to be asked, lots of thinking to do. But I will be saying my prayers. I am confident that, when the time comes, God will guide me in making this critical decision!
Once upon a time I took a more relaxed approach to traveling, often times conserving my energy by taking a day to rest following the day of my appointment before returning home. But this week especially I wanted to get back to my sweet Alice Eloise because my birthday was this past Wednesday! I suppose it was your typical twenty-first birthday, spent baking braided Jewish bread, making charming little tartlets. Wait, that's not how you celebrated your twenty-first birthday? Huh, go figure! Well, I suppose that peach daiquiri can wait until next year. But I did host a celebratory feast for my family in honor of all the wonderfulness of me! And in honor of my humility, too!
My parents and I are still crashing at Krista and Tim's house. The renovation at home is moving right along, though. I hear my kitchen is looking rather empty these days. But our contractor was careful to preserve the cabinet door harboring my beloved sticker collection. Our contractor is a very sweet, considerate guy. But he's married. Darn!
Oh, I hope Billy never reads this!
If I remember correctly, my trip to Philly in August is my next scheduled voyage. After this hectic month, I am looking forward to some much-needed relaxation! Speaking of, I believe a Disney movie and cozy blankie are calling my name! Am I really twenty-one years old? Could've fooled me!