As told to Nicole Audrey Spector
It was a chaotic time. I was 45 years old and working full time with two children – one in high school and the other in elementary school. And being the pastor’s wife also had its demands. Both of my sons suffer from hemophilia, a rare bleeding disorder. My youngest was in and out of the hospital. Every day I was on alert, waiting for a call from his school telling me that I needed to rush over to take him to the emergency room.
One evening I was taking out the trash. The ground was slippery with ice and I slipped and fell flat on my back. It happened so quickly. One moment I was standing, the next I was looking straight up at a glittering ceiling of stars. I was able to get up, but the arm I fell on was badly bruised.
The bruise quickly turned black and blue. It looked exactly like the bruises my sons had gotten. I was worried I might also have a blood clotting disorder (hemophilia is genetic and transmitted from the female X chromosome), so I went to the hemophilia treatment center the next day. Fortunately, tests revealed that I did not have a disorder. Just a badly injured arm.
Over the next week or so the bruising healed, but I developed severe pain in my neck. I went to my family doctor who examined me and apparently found nothing unusual. He thought that perhaps I was in pain from constantly having to carry my youngest son around because he couldn’t walk due to a significant knee joint bleed, and from lugging his wheelchair in and out of the car.
It seemed to make sense. But the pain only got worse and I couldn’t understand why the pain in my neck was so bad when I fell on my arm.
I did what pretty much every very busy and stressed mother does, especially when caring for chronically ill children: I completed one task at a time. Other caregivers in similar situations get it: You reach a point where it becomes nearly impossible to care for yourself, even when you feel like you’ve literally fallen apart.
2025 (Photo/Rebecca Evans)
I hoped the pain would go away on its own, but two years after my fall, I had to do something. I took time for myself and finally decided to see an interventional pain specialist. The doctor came up with a plan to give me steroid injections into my spine. He worked with a partner who specialized in painkiller treatment. I went back and forth between these two specialists and their treatments helped but weren’t nearly enough. I was always in considerable pain.
After six years, my pain doctor looked me in the eyes and said, “I don’t think I can do anything more for you.”
I was depressed, confused and angry. I looked at him and thought, “You’ve got to be kidding me.”
But what should I say to the expert who had reached the end of his strength with me?
I remained under the care of medication management and received the maximum permitted dose. I made sure to take the medication as prescribed, but I was dependent on it. I took a pill five times a day to function. It was literally clockwork. When it was time for the pill, my alarm would go off. Without this regimen, I would not be able to drive, care for my family, or work outside the home (even in my part-time position as a pastor).
Cazandra’s ordination, 2024 (Photo/Rev. Craig Cockrell)
I was also traveling around the country becoming involved in the community of people with bleeding disorders when, as I prepared to board another plane, I realized I just couldn’t do it anymore. Even with the pills, the pain was unbearable. I had to put an end to this pattern and stop taking the medication.
A friend connected me with another pain management specialist who examined me closely and said words that filled my heart with the magic of hope: “I believe I can help you.”
I burst into tears.
Chronic pain dominated my life for over six years. One doctor had given up on me, and now a new doctor finally saw my struggle and believed he could help. He saw me.
When the doctor saw the narcotic painkillers I had been taking for years, his jaw dropped. I was unaware of the effects of this medication. Apparently such strong drugs are not usually prescribed outside of the hospital.
The doctor who prescribed the pain medication did not give me a plan to stop the medication when I asked. He mentioned a basic plan, but only in passing. So I did it myself. My new doctor was shocked that I was able to complete the weaning process on my own and without guidance.
Over the years, I have worked closely with this pain management specialist and a neurosurgeon to get to the bottom of my pain. The cause is still a mystery, but my treatment plan was clear.
I’ve had neck fusions, spinal decompression, epidurals, ablations, and so many steroid injections (I still get these as needed). Spinal decompression surgery was perhaps the most difficult surgery to recover from. It led to chronic neuropathy, but the result gave me a quality of life that I didn’t think I would ever have again.
It’s been a challenge, but I can tell you that now I can finally breathe deeply in a way that I never could when I was locked up in pain. I can go horse riding again. And I can fully be with my family and work full time without the deafening hum of pain.
To be clear, I’m not 100% pain free, but even on bad days I’m a 4 on a scale of 1 to 10. I used to hover at a 7, even with medication. I still have some neuropathy in my fingers, but you know what? I’ll take what I went through any day, because I suffered 24/7 in barely controllable torment.
Today I’m starting a new career and working as a hospice chaplain. I am often surrounded by people who are in severe pain. I feel for them on a level so deep that it cannot be expressed in words. And I see her. I see her in a way I couldn’t before. I too was in debilitating pain. It all feels like I’ve taken off my sunglasses and can see the bright colors of life.
I am a woman blessed beyond my imagination. A large part of this blessing has come from advocating for myself and fighting for health in a system that was perfectly comfortable with me having a drugged problem that cannot be solved.
Maybe you’re going through something similar right now. Maybe you were abandoned by people in white coats. If so, don’t give up. Find someone who will fight for you. Be brave enough not to just accept every answer from someone, no matter how insignificant, just because there is an “MD” after their name.
Every day we are given, with every breath we have, is the opportunity to be part of something better. To become better. Sometimes a pity party is necessary (I often grab the party hats and confetti), but don’t lose hope. And don’t stop looking for professionals who will really listen to you. They are out there, and when they look into your eyes and really see you, you will see: They too have hope.
Do you have any real women, real stories of your own that you would like to share? Let us know.
Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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