back pain

Wow. I don’t even know where to begin so I guess I’ll just start by writing about the Good in my life. I have so many things I feel incredibly thankful for, but I want to share the fact that I am officially off of the opioids! Yay!

No thanks to the pain management doctor though. He was becoming less and less helpful in working with me tapering off. I think the pain clinics will take your money as long as they can while they push for you to try the “new and improved” spinal cord stimulator or another spinal injection (I’ve had 18 of those injections and they never worked, but I knew it kept my doctor(s) happy and me leaving the office with new scripts).

I had been at a standstill for months and was really, really frustrated. Then the morning of my last scheduled appointment (in August) I simply woke up and said, “I’m done.” That was a defining moment for me. Not showing up to an appointment could easily break my pain management contract. And with the opioid epidemic, it was no secret that it was getting harder and harder to find pain management doctors that would accept the responsibility of new patients.

But I truly felt those words, “I’m done”. They were Soul Words. It was a Body-Mind-Spirit moment of consciousness; the kind that can make your toes curl, like the blissful moment you fall into an orgasm. But unlike orgasms, Soul Words tended to elude me. This was profoundly different than saying “I’m working on getting off these meds that I’ve been taking for the past decade”, which I always meant each time I said it, but during that mind-blowing moment it became crystal clear to me that I would be on the meds as long as a dr. told me I needed them; that it was okay; go on, have some more. It was all simultaneous, and from the very center of my Soul, the Source of those two powerful words, I faced honesty and truth without judgement and without doubt. I was done. So I didn’t go to that appointment.

The next day I felt a little uneasy, but I put on a new fentanyl patch (which would end up being my final one) and began to take note of when I actually “needed” a pill for the breakthrough pain. I was still being prescribed 180 of the 10mg oxycodones for the “breakthrough” pain each month to take along with the fentanyl. I’ve been prescribed as many as 210 pills with the 15 patches; but this didn’t change the fact that I had way more than I should. Way more than I needed. People without the opioid tolerance are usually sent home after surgery with 30 pills of 5mg oxy, vicodin, percocet, etc. with maybe one refill, if they’re lucky. For me, that would be like getting a box of Tic Tacs, because every month the pharmacist would hand me enough opioids to kill a pack of mules.

Making the decision that I was done made me realize what a habit it had become to just take a breakthrough pain pill at the first sign of pain, even the slightest twinge. You see, it had been drilled into my head that “you can’t let the pain get too bad because it’ll be harder to get under control”. Well, of course I didn’t want that to happen!

Now I had to face the unpleasant task of re-shaping my thoughts and begin to lessen my fear of something getting out of control. Oh, the irony! At first it was awful to make myself stop each time I reached for pill and ask, what else can I try first? (and not in conjunction with?). I knew I would have to deal with some additional discomfort than what I already lived with every day.

I knew I could try an ice pack. A warm epsom salt bath. Some gentle yoga. Qigong. Meditation. The tens unit. The compound cream. Writing. Creating. Reading. Even that awful acupressure mat. I had this mental list of the things I knew I could try first and If those things failed, I took some Advil or Tylenol. Then I took an oxy. Sometimes another one an hour later. Then I began to notice that as I reached for the pills less and less, the first options were working better and better.

It took a long time though.

And I am not a patient person.

I knew I had hit a milestone when I began breaking the oxys in half. Little by little, day by day, I made progress. Then something totally amazing happened. I went a day without any pills and didn’t even realize it until I went to bed and saw half an oxy from the day before still sitting there on the shelf of my medicine cabinet.

I’m in no more pain than when I was on the opioids. I haven’t had any worse Fibromyalgia flare-ups either (my rheumatologist had once told me that long-term opioid use can actually cause Fibro). Well, no dwelling on the past decade, eh?

My therapist told me it could take another month or two to get my serotonin and dopamine levels back to normal, but at least he’s not suggesting we increase my antidepressants. I will more than likely be on the neurontin the rest of my life because of nerve damage from surgery #1. But I’m okay with that.

Moving forward, I ended up flushing 6 leftover patches and 97 oxycodones. l still have the other half of the last oxycodone sitting on the middle shelf of my medicine cabinet. When I see it every morning and night when I take my other meds, I think about how it no longer has any power over me. It’s a reminder of how far I have come.

Many Blessing on Your Journey )O(

Since chronic pain came into my life 9 years ago, I’ve been trying to deal with a new way of living and with it a whole new way of thinking. And I’ve done a lot of thinking in the past few weeks as I’ve hit some highs and then some low-down lows.There were times in the past week and a half that I couldn’t get out of bed. There have been days in the past week where light and sound were excruciating to my senses. Two days ago I dropped a dinner plate when my hand spasmed and all I could do was helplessly look at the shattered pieces on the floor.

The feeling of helplessness just builds up…and up…and up….

When I’m having a really bad episode and all I can do is lie in bed and stare at the ceiling, I notice a cobweb in the corner. I’ll turn my head and see an empty water glass that needs to be washed. When I turn the other way I see that my closet is messy. For days, sometimes weeks, (at one point about five years ago it had been almost 6 months) my eyes and mind will focus on all the imperfections in my home and see it as a reflection of me as a person. Me as a wife and mother and how I cannot care for those I love the most.

Then when I begin the upswing of good days, I can’t simply snap my fingers and make all the stress disappear. I fill up with anxiety every time I see my overloaded inbox, the empty refrigerator, and the giant piles of laundry. Then I’m like a lot of chronic pain sufferers in that when I have one decent feeling day, I will run around frantically trying to catch up. I’ll clean like a maniac in hopes I can get it all done before the pain returns. And it always does, and at that point it’s usually pissed.

Even after all these years, I’ve yet to fully come to terms with my illness and pain. I’ve read countless books on my conditions and have seen the top specialists. I’ve been coaxed into getting reacquainted with my body (a body that seemed to no longer like me) in order to be more in tune to our (its) rhythm. I’ve learned about energy management and how to create a schedule that works for me. I have seen the need to pattern my week so that I have active days followed by more restful days. I know I have to to do a little bit at a time to prepare for holidays, vacations, or long, hectic days. (I’m eternally grateful that things were good for the California trip) I’ve been schooled in the ways of expressing what my needs are and how to drop my pride when I have to ask for help.

Easier said than done.

I readily grasped the idea to make an outline for my life. I’m excellent at brainstorming ideas and making plans and schedules, but I’m absolutely terrible at following through. You see, I’m a list-maker. I LOVE to make lists. I have a list for nearly everything. Things I need to do, things I want to do, things I need help with, menu planning lists, shopping lists, need to follow-up on lists, home project lists, and on and on it goes.

During the bad times I’ll have short-term memory issues and terrible brain fog, getting easily confused (especially with dates and phone numbers). So I have spiral bound notebooks in every corner of the house (and in my project studio, but let’s not even go there) so that I can jot down ideas and plans as they come to me. Then when I get too many of these ideas and lists and sketches scattered about, I will tear them out and slip them into clear sheet protectors and then place them in the correct three-ring binder, complete with labeled tabs.

Then after I have everything in order, I don’t know where to begin. Which binder was the kids’ back to school supply list in? Where was the list for treatment plans? Where was the mind-map for my dream week? This eventually leads me to the fact that the current organizational system isn’t working.

So I’ll spend time flipping through the shiny plastic coated papers and sort them into new categories. Then I’ll begin to rearrange the tabs, like I’d like to rearrange my life.

I know what you’re probably thinking. That I’m a control freak. Anal. OCD. Manic. Micro-manager. Perfectionist. Hypercritical. Persnickety. Wonder Woman Wannabe.

I raise my hand in surrender. I’m all of the above…most of the time.

So here I go again. I have pared down to one small binder and I’ve put the other binders away. I am back to the basics with my original, simple day to day plan. I know it works because some of my best months in the past few years have been when I followed it. The problem has always been easing back into the routine after being out of commission for more than a few days. The perfectionist in me doesn’t want to just jump in where I am. I want to start with a clean, perfect house. I’m even sure there is such a thing. Or I think it’ll be best if I start at the beginning of the month. Or after ___________.

Well it’s Monday. I suppose it’s as good a day as any to start. I got out of bed and showered. I even followed my ‘routine’ for the day. I’ll be honest. I had a little bit of difficulty following my plan today. It wasn’t hard remembering what needed to be done, but hard to pace myself. To not panic. To not work ahead. To make myself stop between things. To not do two things at once. To have realistic expectations. And to celebrate the small successes as long as I was making progress.

Today wasn’t perfect, but I think I can call it a success.

Many Blessings on your Journey )O(

The Zen Witch

Just Keeping it Real

To Start Where I Am