Thursday, October 17, 2013

Drink Me! cabinet over the kitchen sink holds a multitude of little green bottles; almost all of them have Ron's name on them. Over the years, we have accumulated quite a collection! I am not a scientist, but I can reel off the names of the drugs that have been prescribed to him: Cymbalta, Wellbutrin, Lexapro for depression, Respridal, Klonopin, and Depakote for Bipolar disorder, Coreg for congestive heart failure. Years ago we had a round with Abilify, star of many commercials featuring a dark cloud, but Ron had a--well, let's just call it negative--reaction to it. Shudder. Now I look them all up, preparing myself for possible side effects and a trip to the other side of the looking glass.

So, let's see what Tizanidine, the most recent of the meds to join our extensive collection, will have to offer our family. Do I need to hide the sharp objects? A small, round white pill, it looks innocuous enough. Dr. Aradillas prescribed it for Ron on Monday. Most commonly, Tizanidine is used for relief from muscle spasms. During the exam, Dr. Aradillas found that Ron's extremities--hands and feet--often spasm in sympathy with the damaged abdominal nerves. This is why Ron often feels the need to sit on the side of the bed at night, stretching out his arms and rocking back and forth. It explains it, but it does not help me cope with the swaying of the bed or the slightly queasy feeling in my stomach. other news, however, the Tizanidine does just what we hope the Ketamine will do: it blocks the brain from receiving the signals from the nerves. Ron's first dose put him in such a relaxed state that he fell asleep at Allen's birthday dinner. No one would have minded, except that we were in a restaurant at the time. Luckily, both Allen and Jared are strapping young men so we managed to maneuver Ron home. Lesson learned: only take Tizanidine while home. Ron had a pretty good night's sleep with no rocking motions, although his snoring would wake the dead but that's a whole other problem and not one we think Tizanidine can help.

Here's the trick, though, to dealing with traumatic brain injury; a damaged brain does not always react to drugs in the same way that a "normal" brain would. More than once, a drug that was supposed to cause only mild reactions made my dear husband into a raving lunatic. And on several occasions, a drug so depressed his systems that he hung in a near coma state. I slept with the phone next to me during the night, alert to signs that the Tizanidine might not be all it was cracked up to be and ready to dial 911. Snoring aside, I wasn't sleeping much.

Ron was still breathing normally--for him--this morning so I went off to work. Allen was home all day but my phone didn't ring once. And when I walked in the door at 5:30, Ron was sitting happily on the couch and watching ESPN. It is possible that his color looked better. It is also possible I was too tired to tell.

But this much is clear: the Tizanidine seems to be doing exactly what it is supposed to do. It is a small but important miracle.

Maybe I'll actually sleep tonight.

Wednesday, October 16, 2013

One Last Time

One Last Time

I don't cry too often. I find it to be time consuming and in the last thirteen years--ever since the red pickup truck hit Ron and altered our lives--I have had too little time to spare to waste it on tears. Yes, I know that crying can be therapeutic, but I have found that my journal and my brightly colored pens serve me better than the salty taste of tears; journaling has the added bonus of providing me with a time line of our lives.

But I cried yesterday, sitting there at the  Drexel Department of Neurology across from Hahneman  Hospital and watching as Dr. Aradillas examined my husband and gave explanations for what he was finding to a panel of medical students. I watched as his hands gently probed Ron's abdomen, ran fingers down the scars, and lifted his legs one at a time. "Lessening of inhibitions in the surrounding nerves," Dr. Aradillas said and students scribbled in their notebooks. "Neuropathy brought on by trauma," he explained. More scribbles. More nods.

The medical students--two of which had been in earlier to take Ron's medical history and complimented me on my succinct "Reader's Digest" version of the last thirteen years--were obviously a bit awed by Dr. Enrique Ardillas Lopez who had trained with the famous Dr. Shwartzman, pioneer of ketamine infusion treatments for Complex Regional Pain Syndrome (CRPS). But this was not, as the saying goes, my first rodeo. In the last decade plus, I have taken Ron to more than twenty doctors, seeking help for all the damage done to his body by careless driver. I am not awed by degrees from Ivy league colleges. I've got plenty of degrees myself. For every statement Dr. Aradillas made, I threw out a question. He was patient and respondent. I liked him, and I cannot say that about all the medical personnel we have encountered. And my experience is pretty wide.

I sat in the plastic molded chair provided for my comfort and, as Dr. Aradillas continued his thorough examination, I felt a stirring of something I thought we had lost; I felt hope. Every other doctor jumped to surgery and more surgery; Ron's abdomen was now little more than scar tissue. Dr. Aradillas shook his head. "No more surgery," he said in a Spanish accented voice. "But we can help the pain."

What? Did you say help the pain? Did you say that my husband, father of my children, disabled person since 2000 who has been unable to work or even get out of bed in the morning, can be helped? Have I fallen down the rabbit hole for sure this time?

While the chemistry is a bit beyond me, the theory behind ketamine infusion treatments is pretty simple: the drug retrains the brain and blocks the pain. Ketamine does not repair the damage that has been done to the nerves, but keeps the brain from reading the signals. There is no surgery involved and no long hospital stays and limitations. In most cases, the initial treatment reduces pain to a manageable level and patients receive two or three "boosters" a year which keep them from the level of CRPS that has so debilitated Ron for years. There is even--who knew?--an organization dedicated to the research and recovery of people with CRPS.

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I am cynical; I admit it. In the last thirteen years, I have learned to look before I leap and question any silver lining. And so my research on ketamine and it's treatment has been pretty thorough. I've read the stories. I've looked at the research. And--surprise, surprise--it works.

Will it work for Ron? Well, we will not know until we try. But we have agreed to try. to take one last stab at trying to find a solution for the continuous pain that binds him. We have plenty of hoops to jump through before we are ready for the treatment. Along with tests and clearances, we will need to figure out transportation and treatments. My insurance will not pay for it, but Medicare will, although we will need to be responsible for a $1200 co-pay and 20% of the doctor bills. We will figure it out.

So, join us on this journey, hopefully the last steps of what has been a long and arduous road. I will use this blog to keep you all informed, and to ask for your prayers and support.

Hope. Once again, it stirs us to action.
Romans 12:12  Rejoice in hope, be patient in tribulation, be constant in prayer.

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