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Friday, October 14, 2011

Surgery # ? (Coccygectomy)

I have been chasing the doctors in circles about my chronic tailbone pain, trying to get answers. Multiple times I've posted on this blog about it. Literally, a pain in the butt. Finally, we saw an amazing orthopedic specialist through Dartmouth in Lebanon, NH called Dr. Bernini who has told me I am a good candidate for a Coccygectomy or tail bone removal. He said that a normal person has a sacrum of fused bones and at the bottom a flexible coccyx of 3-5 bones, but mine is only two stiff bones very near the skin causing coccydenia (coccyx pain or tailbone pain). We asked if it was a degenerative feature because my mother ad her mother also had coccygectomys for coccydenia. He replied that only the Maharaj's in India were known to have long coccyx as a sign of royalty.

So, on October 18th I will go in for my surgery and get my tailbone cut open for the second time and go under anesthesia for the millionth time in hopes to be part of the 90% whose pain was eliminated with such surgeries. It should be a couple weeks of recovery and hopefully not a rough first few days. Deep breath, maybe I'll finally be able to horseback ride comfortably.

Walk Before You Run

As I start to feel better every month I am tempted to increase my activity level. After all, its healthy to be out and moving right? Well, I notice more crumby days then great, and I can tell I need to slow down. Even though (as long as I avoid fluorescent) the speech and walking isn't my main issue, I still have vertigo, fatigue, sleep problems, stomach pain, and achy joints. These are enough to keep me in bed on a bad day.

Its often seen that people who start to feel better want to act it and reach out to their previous activities including staying up late, avoiding naps, splurging from a diet, doing activities that are too strenuous like moving furniture, standing for half the day or the whole day, walking more then a mile straight, shopping under that terrible lighting for long periods of time, and forgetting their medicines. These are just things that send you right back downhill twice as hard. I know someone who was sick with Lyme for only a year and even though he felt better after a few months of treatment he still didn't resume to his regular activities until a full year later. Because he gave his body that much time to heal, he still to this day, 3 years later, has not had a single symptom and is resumed to being a star alpine ski racer and coaching his kids.

It's important to be patient at this stage, no matter how much you miss life or think you can handle it. Get little cheer people in on your plan to stay in bed for a month or two and to stay on the sidelines another few months, that way you have more than will power holding you back.

Missing Life

There are times where being chronically ill just gets old. Now is one of those times. When I started to feel better last year I was so happy and thrilled. I started making friends again, and keeping up with them by texting constantly. I attended rock concerts and even labeled myself as a booking agent and hooked bands up with each other, attending weekly shows sometimes. I kept busy throughout the summer and joined an outdoor program where I hiked many key New Hampshire spots like Cannon Mountain, The Flume, Artist Bluff, Franconia Falls, Waterville Valley, and Lafayette Mountain. We visited beaches like Wellington State Park and Hampton Beach where I had endless energy swimming and playing football and volleyball. That is where I spent almost all my time talking and hanging with friends, and then met my boyfriend Tyler. School started and with a busy homework load and crazy schedule I decided to push it a few steps further. Along with joining student council and picking up horseback riding I added a daily running regimen to the plate and on weekends attended my beau's football games. When winter rolled around I joined the Alpine Ski Team and pushed myself as hard as I could as I felt the ground beneath me collapsing. That's when I went down hill again, pushing myself overboard and stressing myself over the edge of a cliff. Now, 10 months later, I wish I could live it all again. I spent this entire past summer in a wheelchair, attending therapy and being left out by friends, unable to enjoy even a nice dip in the pool because of my Picc line. It is hard to go back ten steps, but even harder to go forward 10 steps and back ten leaps! It's almost a feeling like I've been taunted by health, and now I'm forced to suffer in a bath of 'patience'. I sit in bed and hope, pray, and wish for the life I miss to return, even if it's not the same as it was before, I still would like to introduce myself to someone without Lyme hanging over my head. To be normal is to be free, but currently I'm a caged bird with clipped wings.