Stop the ride, I want to get off

Frustrated, exhausted, anxious and yes, scared. Until my doctor’s can figure out what’s causing all my nerve pain and can give me a solution, my life is like a bad carnival ride. I feel like I am spinning around and around with no end in sight. I am now on another “experimental” drug as none of the other four that I’ve tried have worked. This drug was created to help people with addictions to opiates and alcohol. Given at 100mg it blocks the euphoria people feel when they get high and therefore helps to wean them off their dependency. I however, I have been prescribed 1.5 mg and will slowly increase to 4.5mg. At these small doses the drug acts a nerve blocker and hopefully will enable me to get some sleep. Right now, the nerve pain I experience keeps me up…all night, every night.

Because this drug is made in 100mg pill form and I need 1.5mg, I have to get it at a special compounding pharmacy that breaks it down and creates special capsules for me. There aren’t many pharmacies that do this and it takes up to ten days to have the prescription filled. It’s also very expensive, but I am so desperate to find relief that I’d do or take just about anything if I thought it would work. I picture myself as a hag, which given how I look and feel, is not a stretch, standing around a giant cauldron stirring up a magical brew; a potion that will turn me into a beautiful princess?! No, fu#k that, I’ll trade pretty princess for pain free Patti any day. Has anyone tried “eye of newt”?

I’ve been taking the new meds for a few weeks and so far have not seen an improvement although the pharmacist said it could take a few months! The big side effect of this medication is that it causes vivid dreams. Vivid is an understatement. Last night I dreamt I was being pulled behind a car over asphalt and gravel, ripping my chest and torso apart. I woke up drenched in sweat with the nerve pain in my chest and back raging. I had been asleep for less than an hour and now felt even more anxious and tired than before. After my nerve pain subsided to a manageable level, I was able to get back to sleep but continued to wake up every hour still in pain. I dread when night falls and I climb into bed. I am so exhausted from lack of sleep and from being in pain 24/7 that you’d think I’d relish the thought of bedtime, but the thought of another night of tossing and turning, staring at the clock and trying to calm my mind and body is daunting. I desperately want to fall asleep and stay asleep. I’ll even endure the nightmares brought on by the medication if only I could get a “good” night’s sleep.

I am still on a waiting list to see a nerve specialist at a pain clinic. The waiting list is up to a year. My family doctor has been pushing hard to get me in. I already am a patient at the clinic as I go every three months for epidural steroid injections in my back. But I need to see a different doctor for my nerve pain. Even though I am a current patient I still have to wait my turn like everyone else.

It’s crazy how my life has changed since being diagnosed with cancer. Everything now revolves around appointments, procedures, surgeries, medications, insurance claims and pain management. Cancer has cast a spell on me. I don’t recognize myself anymore. Who is this woman who is now so emotional, riddled with anxiety and fed up with what each day brings. This is not who I once was. This is not who I want to be. I am trying so hard to stay positive; to find the joy in every day and to be thankful for all the good in my life. Compared to so many, I live a fairy tale life. I have a home, family and food on my table. I am blessed…so why do I feel cursed?!?!

#breastcancer #anxiety #painmanagement #positivementalattitude #chronicpain #survivor


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President of As You Like It Marketing & Communications Inc. Award winning speaker and author. Breast cancer fighter and blogger. I’m sharing my journey…the good, the bad and the ugly. Hoping to help anyone else that has been touched by breast cancer be it you or someone you know or love.

1 Comment Leave a comment

  1. You have every right to feel. Everything. You. Feel. No guilt over the roof or the food or the car. This isn’t a fairy tale and we grapple around looking for some meaning in this new life with pain, insomnia, poisonous cures, appointments, doctors, and on…I’m sure I remember the many times I tried to tell myself I don’t need pain meds. Do you have access to a palliative oncologist? If you do please try to seek out their help – they treat the side effects and psychosocial challenges via prescription or getting you to the right person, or other kinds of treatments. Cancer doesn’t mean you have to be in pain, agony or losing sleep. If you don’t have a palliative oncologist available is there a possibility of finding a new cancer center? Please reach out there’s a lot of resources available…happy to help.


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