I Survived a Life of Too Much Pain and No Sleep
When pain robbed her of sleep, Pat turned her bedroom into a "peaceful haven."(PATRICIA SKIBA)I haven't gone a day without pain—or had a good night's sleep—since September 2000. While waiting at a highway on-ramp one afternoon, my car was hit from behind and thrown into oncoming traffic.
My spine shifted to the right and my vertebrae were knocked out of alignment. A critical nerve root in my spinal cord was nearly severed, leaving me with no feeling in my right leg, foot, and toes.
For months after the accident I went through traction, steroid injections, and surgery to remove the damaged bone and restore some of the feeling in my leg. I went back and forth to my neurosurgeon for a cocktail of narcotics—but even with all the drugs, pain had taken over my life.
I wore a leg brace and could barely get out of bed. I couldn't walk, hadn't driven in months, and lived in constant fear of these terrible, electrocution-like shocks that shot through my lower back, leg, and foot nearly every 10 seconds.
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I was awake for entire nights, days on end. I'd doze off for half an hour, and then I'd jump out of bed when a spasm of pain hit my legs; you'd think someone was stabbing me to death the way I screamed at the top of my lungs.
Hitting rock bottom—and begging for help
No matter how many times I went back and forth to my doctors—telling them I wasn't sleeping, had lost 30 pounds, wasn't eating, and sinking into depression—not one of them ever said to me, "You should see a pain doctor." I'd been a nurse for about six years, and I know the importance of getting a second opinion.
So almost a year after my accident, I called my neurosurgeon at 4:30 in the morning. I remember thinking, I literally cannot live another day like this. My suffering had affected every single aspect of my life: relationships, spirituality, my self-identity—it had all just collapsed around me.
On the phone I told my doctor that I had to do something to make the pain manageable, just so I could sleep and walk again. And he said to me, totally exasperated, "What do you want from me, Sweetie?" Sweetie. That just blew me away.
I told him I'd written a letter that held him and my insurance company responsible, if anything happened to me, for allowing me to suffer for so long. I told him he had one hour to get me some help. He finally said, "Well, at this point, I guess you're a chronic pain patient."
Next Page: Finding relief from an unexpected solution [ pagebreak ]Finding relief from an unexpected solution
My new pain-management doctor told me that my disability was permanent, but that he could at least help with my constant pain. He proposed an implanted morphine pump—which sounded good, because I knew I'd sleep.
But I wanted to get back to being a nurse and not a patient. And as a nurse, I didn't want any narcotics in my system when I went back to work.
The other option was a spinal cord stimulator. I'd never heard of it, but at that point I was willing to try anything. I read about it online and went in for a trial, where a doctor applied an electrical current to my spinal cord in an effort to mask as much pain as possible.
In the recovery room I sat and waited for the jolts of pain to come back … but they didn't. After the trial treatment, I honestly cried for six hours straight. Then I slept for the next six hours, right there in the hospital.
Two weeks later I had two permanent stimulators and four leads implanted in my back. I needed surgery every eight months to change the batteries, but it was worth it until I recently replaced my implants with a pair of rechargeable units.
The stimulation treatment hasn't gotten rid of my pain completely. But it has cut it down by about 50% to 75%, and I can definitely live with that. My sleep has improved too, although I still dread going to bed because of the insomnia I've developed.
Creating a haven for sleep and relaxation
To help my sleep problem, I've turned my room into a peaceful haven. I have a rock garden filled with rocks from memorable places, a fountain, and candles.
I like to shut the blinds, put on soft music, and practice relaxation techniques that help me fall asleep almost every night. A sign on my bedroom door tells my husband and kids to stay out while I'm winding down.
When you're in constant pain and can't sleep, it turns your entire world upside down. Your life is stripped from you, and you have to learn to live all over again.
Since my injury I've had to keep a sock on my right foot all the time because it's too sensitive for the wind to hit my bare skin. I've always been an outdoors person, and to know that I could never set my bare feet on a sandy beach again really changed me as a person.
I used to be on a racquetball team—I played with the men because I was too good for the women. I used to ride a four-wheeler. I owned two jet skis, a boat, and Rollerblades. Slowly I've gotten rid of everything, given it to Goodwill.
But slowly I've started my life over. I've become an avid photographer, painter, and jewelry maker, and I've decorated my bedroom with peaceful nature scenes—places I can no longer visit except in my mind.
Getting my life back—and finding a new purpose
Finally I could get back to work helping other people. For five years I worked as a nurse in a chronic pain practice, teaching patients relaxation techniques, massage therapy, and hot stone therapy—all the things that have helped me get through my own experiences.
But I wanted to do more. I wanted to reach patients on a national level. So in 2006, I contacted Boston Scientific, the manufacturer of my spinal cord stimulator, and told them I wanted a job. I met with a company executive who said, "But we don't have a patient advocacy department." And I said, "Well, you do now."
They hired me, as a patient advocate, to help create a website, RaceAgainstPain.com, for chronic pain patients and their spouses and family members. I moderate online discussions about sleep deprivation, depression, intimacy—all kinds of related topics.
I'm now a full-time pain ambassador and clinical nurse manager, which means I travel across the U.S. speaking to patients, doctors, nurse practitioners, and nurses about pain. This has by far been the most rewarding year of my career as a nurse: I'm changing lives, saving lives, and helping people get back on track.