How I'm Solving Chronic Pain
I show you how I am releasing my pain, one step at a time. You can too.
Part 4 in a 4-Part Series. In case you missed the earlier parts, here they are:
Part 2 - The Pain Was Awful
What were you thinking in this picture? My therapist asks me.
I have no idea. I play Detective Columbo. Well, there are 10 candles on the cake, so it must be my 10th birthday. I’m making some progress.
And there is a bicycle on the cake. I must have gotten a bike for my birthday…
Oh my gosh (starting to remember a little more). I think I felt a feeling of freedom when I got that bike. I could ride and ride. We lived on a cul-de-sac, where there was no place to go once you hit the end of the road.
At a certain point, I was old enough to walk my bike through the backyard, so I didn’t need to ride on the extremely busy Mission Road.
Wanting To Get Lost
Once on the other side, there was a maze of streets I could ride my bike up and down. My goal. It was to get lost. I wanted to see if I could find my way out of it. I never could get lost, but I kept trying.
This seemed completely normal to me. However, my therapist had other thoughts. You wanted to get lost? To her, this spoke volumes.
I was not comfortable at home. My perception of home was not a comforting place to be. At home, this was, ahem…., 40 or so years ago.
But I’m jumping ahead.
When I got home from Mayo and Canyon Ranch,
I needed to reengage my existing team of doctors to catch them up and adjust medications. Frustration became a theme when I had a new plan to implement, but could not implement it for a variety of reasons:
Could not get in to see an existing doctor for 1 month to change primary medication.
How would I find a skilled and qualified pelvic floor physical therapist?
Finding a psychologist proved to be quite difficult.
Meditation was hard to get going with my nonstop workdays.
With these challenges, I felt like I was juggling Cutco-sharpened kitchen knives to implement my plan. I was unable to make enough progress to implement anything in the first 2 weeks.
Then, the unimaginable happened. One night, I woke up in the middle of the night with horrible stomach pains that had me running to the toilet. I needed my husband’s help in the middle of the night with cleanup and keeping my sanity in the middle of the crazy that was happening.
The Unsung Hero
It is very important to note here that there is an unsung hero in my journey story. And that is my husband.
If you’re wondering how I kept my sanity through all this and continue to, it is in part due to the overwhelming and thoughtful support from my husband. I shudder to think what the outcome of this entire situation would be if, for some reason, he were not involved in it.
I feel that if God was going to give me these repeated issues, he at least gave me the gift of my husband.
By the second day of this bug, I knew it had to be more than the flu. The flu would not give me the wrestling in my stomach and that complete inability to control what was happening.
After Urgent Care, contributing the at-home samples and returning them promptly (thanks to my unsung hero), my diagnosis was in —- c diff.
Disaster Struck
Clostridium Difficile (commonly known as c diff) is a severe bacterial infection that occurs in the colon. It is similar to MRSA (better known, but a similar infection that is also resistant to antibiotics) in that it is highly contagious and hard to get rid of.
I already had IBS (irritable bowel syndrome, another one of my invisible illnesses), which could throw my bowel output into disarray at a moment’s notice by eating the wrong food, getting stressed out, getting sick or any other unknown reason. C diff would not be good for my already battling bowels.
C diff meant I was banished exclusively to a single bathroom in the house. Every time after I used the toilet, I had to wash my hands thoroughly, with antibacterial hand soap, then wipe down the following with a Clorox wipe:
the toilet seat
under the toilet seat, both under the seat and the basin underneath it
the sides of the basin that head towards the floor
the toilet handle
the sink handles, faucet and the soap pump
And I was going to the bathroom frequently!
I Starved Myself
If I needed to leave the house for a doctor’s appointment or any other reason, I did not eat the day prior. It was the only way I would be able to safely leave the house the next day to ensure no accidents nor opportunities to spread c diff further.
I was on vancomycin (the antibiotic for c diff) for a total of 54 days. I also had to take an dreadful powder, mixed with water, to try to control the consistency of my bowels. At the peak, I was mixing 1 powder packet 4 times a day. Today, I still mix powder once a day to minimize the chance of the c diff returning. Ick.
In the end, I tested positive for c diff for 6+ weeks. Post the negative test result, my bowels still needed to resolve back to that of an acceptable everyday consistency. That took another 6 weeks, with variable, unreliable results during this time. It was the end of January before I could confidently go out in public and not be worried about any kind of c-diff-related situation showing up.
The Mayo Treatments Go On Hold
With c diff, every single Mayo recommendation got put on hold. The solutions to my chronic pain journey sat on the shelf collecting dust while I endured an uncomfortable, disturbing and relentless infection, wondering if and when it would go away. Instead of going to PT, having stretching assignments, starting with a therapist and making any progress, I sat on the toilet and mindlessly watched every interesting and uninteresting streaming show that was available.
I felt like a pathetic existence of a human being.
But it was all I could do. I sometimes ate (depending on whether I needed to leave the house or not), and I kept a precise medication schedule tracked by alarms on my phone to ensure I remembered to take the nerve med, the infection med and the icky powder (amongst others) at the right time.
I’m still using the alarm-on-my-phone method to make sure I take my meds at the right time today. It’s very effective. Fortunately, the alarms don’t go off as many times today as they used to during that very different state of my being that was only about 3-4 months ago at this point.
Relief from c diff finally made its way and I was able to proceed with the Mayo Solution.
Picking up where I left off …
My therapist thought it was interesting that I wanted to ride and ride and ride my bike until I got lost, when I was 10 years old. What was I escaping from?
Through this multi-part series, I’ve called out a few definitions of trauma:
A deeply distressing or disturbing experience that overwhelms a person's coping mechanisms, causing significant emotional, psychological, and sometimes physical harm (Google AI compilation)
An emotional response to a terrible event. Two people’s responses to the same event may not be the same. One may experience trauma while the other will not. (American Psychological Association)
…not having the resources at the time to process what’s happening in the way your body needs it to. (My therapist - keeping her anonymous at this time)
Through my therapy (which is still in progress), I have identified trauma, both in my childhood and in my young adult life. My childhood did not give me the tools to know how to handle certain situations in my adult life.
Slowly, Memories Are Returning
There are memories that I had completely blocked that are coming to the surface now.
As I go through this process, resurface the memories and talk about them, my pain comes along for the journey. As the thoughts surface and as I start to talk about them, the pain is often at an all-time high.
On the three occasions where previously-blocked memories became clear, when I finished talking about it, suddenly and almost abruptly, the pain was gone. It’s like it released at the moment I talked about what I remembered, as I was remembering it. If I weren’t involved directly in what happened, I’m not sure I would believe it.
My body was holding on to the pain along with the memories that were buried so deeply, their existence was not even known.
Who would have thought this would all surface in my 50s as unfathomable pelvic floor pain? It’s taken this entire journey, starting with the mystery unsolvable by my regular medical care team, driving to a specialist in downtown Chicago, finally pulling the trigger to go to Mayo, battling my way through c diff and eventually starting to execute on the multi-prong solution.
Holding Pain Without My Conscious Mind Being Aware
I’m not there yet. There are days (like the previous three, at the time of this writing) that I have 10 out of 10 pain, on the pain assessment scale.
Now that I understand a little bit more about how the body works — holding in pain without my conscious mind even being aware — I wonder if the excess pain this week is because I had this article looming to write and I didn’t know what I was going to say about the trauma or how I would say it. I think so. (As I review a final draft, the pain has released. I’m currently at 0/10.)
Keep in mind that trauma therapy is not the only work I’ve been doing. It is one prong in the multi-pronged solution.
I do have a reading list of some books I read or listened to on Audible as I sought (and am still seeking) answers. I’m sure I’ve just scratched the surface of the resources available. Feel free to send me any of your recos specific to this topic and I’ll get them added.
Enough is Enough
I know I am not providing explicit details. Some of you may have wanted that. Most of you, I imagine, are grateful without those details. I’m still processing everything, so what I’ve said here is just enough for today. Just enough to help me process it and just enough to, I hope, help some of you in some way.
The Gift of C Diff?
As bad as the c diff got, it also gave me a gift. I truly believe that in those moments, when the worst possible thing happens to you, are when we seek the polar opposite, in a harder, faster and more intense way than we would without the devastating event.
So our worst moment becomes our best. Our opportunity to shine. C diff, which became the ultimate low embedded in the pain journey, gave me a new reason for existence and a new reason for writing. My writing path took a pivot because of the illness, and I knew I had to start Living an Unlimited Life.
While my discovery and improved health journey continue, you will continue to hear my latest revelations and how I find joy despite the setbacks.
Where I Find Joy
My unsung hero, who I mentioned earlier (my husband), is my rock and I’m grateful every day that he has not only stuck with me through this, but he supports me in ways I would not have even thought of.
I am a writer! I’ve wanted to say this for a long time. Now I can. As a creator, I also respond to artist and innovator.
I’m now a familiar face at the gym — doing my very limited version of working out. I am building up my time and endurance on the Nustep machine. I also do lots of stretching.
I can eat every day now. I’m working on getting back to a regular regimen of 3 meals of protein a day.
My 3 furry co-workers, highlighted in the join the crew section of my About Page give me joy every day with their licks, their bellies, their playfulness, their loyalty and their unconditional love.
My faith. Knowing that this is part of God’s plan, to use my trauma for good. Maybe His reason is for me to be writing Living an Unlimited Life now.
Either way, I know that God is here to take care of me in the way He sees best. I do struggle sometimes with why this is His plan, but I continue to believe He has some reason.
As this series concludes, I am intentionally leaving the complete solution open. My journey is still in progress and a new part of the solution may be identified before the full journey is over.
Thank you for being with me on this journey. I would love to hear your stories, if you’re comfortable sharing them in the comments below. Or, you can message me directly by replying to the email that sent you this newsletter, if you are a subscriber.
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Wow - what a journey. You are incredible resilent and no doubt your faith has played a big role,
I hope your health continues to rebound
Julie… yesssssss!!!! This is a beautifully courageous post and I’m so honored to call you friend!