The Nerve

To say that I have been rather unmotivated the past few weeks would be an understatement. So, for those of you who are truly interested in this ridiculously crazy journey, I will do my best to give you a shortened play-by-play of the last few weeks.

Getting my ticket out of St. Mary’s was a blessing but my body decided not to go down without a fight. Mom and I stayed at The Homewood Suites, minutes from the hospital. At the time of discharge, I was still only allowed clear liquids and had two days to go number two. Mom pretty much bought every single over the counter laxative and stool softener known to mankind to make the process go quickly and smoothly. What ended up happening was everything but. My mind began playing tricks on me and I was so terrified to relive the ileus that I’d had in the hospital that I was nearly convinced I wasn’t yet in the clear almost a week after discharge. It took a phone call with one of the doctors from the Paley Institute to knock some sense into my skull and convince me that I was ok to start eating solid foods again. And of course, ice cream for dinner was my first choice.

Sleep was near impossible. My body had shifted into overdrive in order to heal and I was having trouble regulating my body temperature. I would go to sleep cold and wake up a couple hours later wide awake and sweatin’ my panties off. There wasn’t a medicine that I’d found to take the edge off… yet. Two to three hours was what I was averaging for sleep at night. That made for one unpleasant patient; sleep deprived and in pain. 

Showering was a whole other story. It was all I wanted to do yet I still had to wait A WEEK. Until then, I was washing my hair in the sink and using a hospital bin of soapy water with a washcloth for an ‘adapted’ bath. When the day finally came, I knew that I wasn’t going to be able to stand up in the shower. Determined to make this much needed bathing event happen, mom went in search of something for me to sit on. Waiting patiently in the car, I was humbled when she returned with a styrofoam cooler. Gee, thanks mom. I’m glad that you think I only weigh 40lbs but in fact, this was not going to work. She insisted it would and I had to wait until we got back to the hotel to prove her wrong. That cooler didn’t stand a chance. It’s a good thing that we managed to find back-up: a plastic wastebasket. It didn’t take long to be reminded of how magical a post-surgical shower is. It’s a good thing it happened when it did because I had my first physical therapy appointment the next day. I would have been doing the entire PALLI Rehab staff a disservice had I not bathed. 

Ah yes. Physical therapy. Blue Cross Blue Shield was kind enough to limit me to 30 days worth of torture. 30 days to regain mobility and independence. Let’s just say that I am that little turtle racing the hare. I feel like I’m just now getting over the starting line. I continually tell myself that slow and steady will get me there; baby steps. And if there was a place with people who could get me back on my feet, it would be The Paley Institute’s physical therapists. Dayle is my girl. You know how some people can be really, really talented at what they do but it’s rather difficult to explain why or how; they just are? Yeah, that. Well that’s how I feel about Dayle and all of the therapists that have had the pleasure of having me as their subject of torture. They push me, accept the tears that fall, validate my feelings of concern and push me some more. It’s not every day that you can have a discussion about the chakras with the lovely lady who is also trying to fix your jacked up SI joint.

That’s the part about this recovery that I do love; the people that I get to interact with on a daily basis. The stories, the hugs, the tears and the understanding. There isn’t another place in this world where I could find anything similar. From the staff at PALLI to the fellow patients who have become family – they keep me afloat when the flood waters begin to rise. We sit outside of the physical therapy office laughing or expressing serious concern about life’s happenings and getting comfort and advice in return. It’s the silver lining to an intense spine surgery; extended family and friends for life.

Jennifer, Myself and Caroline. These two are the glue that holds the clinic together.

The team that put me pack together: Tiffany, John and Dr. Feldman.

Three women with different stories and one beautiful understanding.

Dad flew down and overlapped with mom for a few days before she flew back. Finally, I was cleared to swim and my insurance found it in their hearts to give me 12 aquatic therapy sessions. How kind. Sleep and I were becoming friends. And it seemed as though things were finally falling into place. And then, on a Monday night, I woke up with a searing pain in my right calf. Just like that, it seemed as if my progress was taking a rather large step backwards. The next day I was sent to the hospital for an ultrasound to rule out a blood clot. The results came back negative but the pain was relentless. There was no medication that eased the overwhelming pressure and burning in. My leg. And of course, it was much worse at night so sleep became a stranger to me….again. It got to the point where I could barely do anything in physical therapy because I was in so much discomfort.  Dr. Feldman explained that my nerves were crushed before surgery. Now they were waking up. Oh really?  Just waking up? How about waking up with a vengeance!?
The nerve. This went on for weeks. During the day, I tried to stay distracted as that was about the only thing that helped. And at night I tried to find the perfect combination of drugs to knock me out, at least for a few hours, without doing any damage. (Fear not, everything  was pre-approved by a medical professional.)  

On June 2 I hit my 1 month post-op mark and on June 3 it was 18 years to the day of my very first surgery with Dr. Paley. It was cause for celebration because my nerve pain had begun to let up and I was no longer being chaperoned. Dad was off the hook and out of the humidity. Staying out of trouble has been difficult. Luckily I have some great friends here who adore my company.

Still, staying positive has been challenging. Progress is o h s o s l o o o o w and my expectations are being shadowed by my current inability to walk unassisted. The nerve pain has returned and I can’t help but feel like I continue taking one step forward and two steps back. As of this moment, I am here in Florida until June 26. Only time will tell. And. I have a choice: I can let it drag me down or I can keep my head held high and see the experience through, not only my eyes but also my heart. It’s a learning experience filled with connection, love and vulnerability. So here’s to being open, more walking, less nerve pain and a cure for my severe ice cream addiction.


Hanging out with some of the PALLI family at International Dinner Night.

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