Instead, the first thing I felt was relief.

I had been with the company for 14 years. I built a reputation as someone reliable, someone who got things done. I was on the team with the most interesting work, the most funding, and the strongest leadership.

From the outside, everything looked right.

Except it wasn’t.

I was dealing with chronic pain.

At first, I could manage it. I would get through the workday, using work as a distraction, and then deal with the pain afterward. It became a cycle I unknowingly sustained for years.

Not because I didn’t trust her, but because I didn’t want it to change how she saw me.

I had built an identity as someone who handled things.

I didn’t want that to shift.

Eventually, the pain became impossible to ignore.

I sought answers. I went to the Mayo Clinic. I tried to keep working through it.

Then everything escalated at once.

The pain worsened.

A serious infection hit.

My performance started to slip.

The life that had worked for years stopped working.

The dynamic with my manager changed.

What had been a relationship built on trust and ease became more formal, more distant.

Whether it was real or perceived, it didn’t matter.

Something had shifted.

I took a medical leave of absence.

As my return approached, my physical therapist told me she didn’t think I could go back to full-time work.

I agreed.

But my role didn’t have a part-time option.

So the question became:

Do I go back and try to force it?

Or do I walk away?

Then the decision was made for me.

My role was eliminated in a large-scale layoff, effective on my return-to-work date.

First came relief.

Then came something else: freedom.

The question changed.

The answer wasn’t entirely new.

Years earlier, I had started a business. I had always been drawn to creative work.

That pull had been there all along.

I just kept answering it with, Not right now.

The life I wanted had been showing up for years.

I just wasn’t ready to choose it.

After signing my severance agreement with the company, I joined one of my daily conference calls with my international writing community (including England, Australia, Connecticut and California).

And just like that, something shifted.

New World

Sometimes we don’t change our path because we are brave.

Sometimes God removes the path we were clinging to.

And then we have to decide what to build next.

I thought I was writing about pain.

But the deeper story was never just pain.

It was about questioning the narratives I had accepted without realizing it.

About recognizing when a life no longer fits.

About choosing differently.

Stop Waiting for Permission

My hope is that a year from now, my readers will no longer wait for permission to act on what they already know.

If you’re new here, start with:

Start Here: Living an Unlimited Life

The Unlimited Life Manifesto

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If this essay resonates with you, I’d love to hear what it brings up for you. Just hit reply and tell me.

If you’re here, there’s a good chance your life looks successful on paper.

You’ve worked hard. Built something meaningful. Checked many of the boxes you once believed would define success.

And yet something in you quietly wonders if there might be more:

• More alignment.

• More creativity.

• More possibility than the version of life you’ve accepted so far.

You’re not alone in that feeling.

For years, I followed a path that looked right from the outside — a long corporate career, stability, recognition. But life has a way of interrupting the stories we think we’re supposed to live.

Through chronic pain, career disruption and a return to the creative work I was drawn to for years, I began asking a different question:

That question is at the heart of this publication.

Living an Unlimited Life is about questioning the narratives we inherit — about work, success, health and identity — and building lives that actually fit.

Because many of the limits we accept are simply stories we’ve been taught not to question.

Here you’ll find writing about:

• recognizing when a life no longer fits

• questioning cultural and personal narratives about success

• experiments in building a more aligned life

• the courage to trust what you already know

If you’re new here, these are the best places to begin:

Stop Waiting for Permission — the story of how this chapter began.

The Unlimited Life Manifesto — the beliefs behind this publication.

Some of the earliest writing here came out of my experience living with chronic pain. If that part of the story resonates with you, you can explore it through the Pain Story posts.

My hope is that a year from now, readers of this publication will have given themselves permission to do something they once believed they couldn’t.

If this sounds like the kind of conversation you want to be part of, you’re in the right place.

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But something feels off.

Not broken.

Not failing.

Just… misaligned.

That feeling is often dismissed. Ignored. Explained away.

But it’s usually telling the truth.

Because many of the boundaries we accept are not chosen.

They are inherited:

• Career expectations

• Stories about our health and well-being

• Cultural definitions of thriving

We absorb these narratives over time and begin to treat them as fact.

Until something forces us to question them.

For me, that moment came through pain.

My experience with chronic pain forced me to confront a story I was being given:

At first, I accepted that.

But over time, I began to question it.

I asked more questions.

I challenged the answers.

I stopped deferring to authority simply because it was presented as authority.

What I found was not a single answer, but a process.

A process of gathering information, testing ideas and trusting my own judgment.

And gradually, something shifted.

• Moments of less pain.

• Sometimes no pain at all.

• Life became more livable.

But the deeper realization wasn’t just about pain.

It was about the nature of limits themselves.

An unlimited life is not a life without obstacles.

It’s a life where we refuse the limits that were never truly ours.

The Unlimited Life Beliefs:

1. We believe questioning the narrative is often the beginning of freedom.

2. We question the narratives we’ve inherited about success, health and identity.

3. We believe success can mask finding who you really are.

4. We trust people often already know the truth about their lives, even if they haven’t acted on it yet.

5. We understand that waiting for permission is often what keeps us stuck.

6. We see that limits expand or contract based on what we are willing to question.

7. We take responsibility for our own lives, even when the answers are not clear.

8. We believe many people already know the truth about their lives but are waiting for permission to act on it.

9. We believe possibility expands the moment we stop accepting arbitrary limits.

10. We believe anyone can have agency over their own lives.

11. We believe there is a plan greater than any plan that we design, which is created and directed by God.

12. We are honored and privileged to be a part of God’s plan.

Living an Unlimited Life doesn’t mean life becomes easier.

It means becoming honest about the limits we’ve accepted — and choosing which ones truly belong to us.

It’s a life where we refuse the limits that were arbitrarily assigned.

Sometimes it looks obvious.

Sometimes it’s subtle.

A distraction.

A habit.

A belief we never thought to challenge.

We remove what no longer serves us.

We build what does.

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A long day, too much activity, a spike in stress—and the symptoms follow like clockwork.

But one afternoon, after an unexpectedly stressful exchange, the flare hit fast and hard. My body reacted as if something dangerous had happened.

Except nothing dangerous had happened.

No new injury.

No sudden movement.

No physical trigger.

Just stress.

That was the moment I started to suspect my nervous system wasn’t responding to the present.

It was responding to something from the past.

The Emotional Blind Spot I Didn’t Know I Had

For years, I didn’t know I was suppressing emotions. I wasn’t numb. I wasn’t disconnected. I wasn’t avoiding anything on purpose.

I simply didn’t feel certain emotions—especially anger.

If something upset me, I went straight to sadness, disappointment or problem-solving. I didn’t identify anger because it never felt safe, productive or useful.

But here’s what I’ve learned:

And suppressed emotions—especially anger—keep the nervous system on high alert.

High alert amplifies pain.

This was the blind spot that my article, Rethinking What is Behind My Pain. was leading me toward, and I didn’t see it coming.

The Emotional Moment That Broke the Pattern

In therapy, there was a moment during EAET when sadness surfaced in a way that didn’t match the situation. It was too big. Too heavy. Too familiar.

My therapist asked a question I wasn’t prepared for:

“Is this sadness… actually anger?”

Instantly, my body reacted.

Not my thoughts.

My body.

My chest tightened.

My face got hot.

My breathing changed.

It was the first time I realized: I had spent decades routing anger through sadness because sadness felt safer.

It wasn’t wrong.

It wasn’t character failure.

It was adaptation.

But the cost of that adaptation was a nervous system that treated anger like danger—because I never allowed myself to feel it consciously.

Which meant the emotion didn’t disappear.

My body carried it.

And my pain amplified it.

Why This Matters for Chronic Pain

This isn’t about “feeling your feelings.”

It’s about neurophysiology.

When anger or other “threat-tagged” emotions are suppressed:

• the amygdala stays activated

• the nervous system interprets internal emotion as external danger

• the body braces

• bracing amplifies pain signals

• the brain strengthens the pain pathway

• symptoms flare even without physical cause

This is not imaginary pain.

This is not “thinking yourself sick.”

This is not blaming patients.

This is a nervous system doing its job too well.

Understanding that mechanism changed everything for me.

EAET: A Different Kind of Emotional Work

Emotional Awareness and Expression Therapy (EAET) is not talk therapy.

It’s not dumping emotions.

It’s not dramatic catharsis.

It’s structured.

It’s contained.

It’s grounded in neuroscience.

EAET helps the brain reclassify certain emotions—especially anger, fear, disappointment and shame—from “dangerous” to “allowed.”

And when the brain no longer treats an internal emotion as an external threat, it stops producing protective responses the body can’t sustain.

Including amplified pain.

EAET isn’t about emoting.

It’s about updating the nervous system’s threat map.

That distinction matters.

What This Looked Like for Me (Early Steps Only)

I didn’t begin with a big emotional event.

I started with the smallest irritations I usually swallowed:

• The moment I felt brushed off

• The moment I said “it’s fine” when it wasn’t

• The moment I tightened my jaw instead of naming what bothered me

I practiced noticing the physical sensation of anger before interpreting it.

If I felt heat, tightness or pressure, I labeled it quietly:

“This is anger.”

Not acted on.

Not analyzed.

Just acknowledged.

I wrote an unsent letter—not to deliver, but to let the emotion exist.

I said things out loud I had never said before, even if no one else heard them.

Small, contained steps.

Nothing dramatic.

Just the beginning of teaching my nervous system that the emotion wasn’t dangerous.

Boundaries (Read This Twice)

This work is powerful, but it requires responsibility.

• This should be done with therapeutic support.

• Not all chronic pain is amplified.

• Not all symptoms are emotional in origin.

• This is not a replacement for medical care.

Structural and emotional factors can coexist.

My own story confirms that.

This framework does not apply to everyone.

What I am sharing is not a prescription.

It’s a lens.

The Impact So Far

My pain hasn’t disappeared.

But my nervous system is no longer reacting blindly.

• Flares are shorter.

• Intensity is lower.

• My body feels less braced.

• I feel more in control.

• I can see patterns I couldn’t see before.

And most importantly:

That’s the shift I didn’t know I needed.

And it’s the shift that’s quietly changing everything, as it starts.

The more I understand the emotional engine behind my pain, the less power that pain has over me.

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Two columns.

Structural.

Neuroplastic.

The assignment was simple: list the evidence for each.

I assumed the Structural column would fill quickly. After all, I had been living with chronic pain for more than three years. Surely something was visibly broken.

But when I started writing, the column stayed surprisingly thin.

• Pain that moved and had inconsistent patterns.

• Pain that flared during stress.

• Pain that intensified without new injury.

Those didn’t fit neatly under structural damage.

Two items refused to cooperate:

• Physical therapy helps.

• Ice helps.

But why?

Because of tissue healing?

Because movement calms the nervous system?

Because reduced fear reduces pain?

I couldn’t categorize them cleanly. That was the first crack in the story I had been telling myself.

Shocking New Knowledge

A few weeks later, I mentioned this framework to my physical therapist. During a side conversation, she explained something I had never been told before, not even by Mayo: I do have structural nerve involvement in my spine. Irritated nerves that wrap around and can trigger symptoms.

That information should have dismantled the neuroplastic hypothesis. Instead, it clarified it.

Structural vulnerability and nervous system amplification can coexist.

It felt strange to be learning something so powerful and so fundamental to my pain issue and to its solution so far into the 3+ year journey.

The nerves may be irritated. But a sensitized nervous system can magnify that signal far beyond its original threat level.

For the first time, my pain story felt more layered than broken. And layered meant leverage.

But is this pain real?

When I started reading about neuroplastic pain, one description finally made sense:

Chronic pain can involve a sensitized nervous system that continues generating real physical pain even when there isn’t ongoing tissue damage.

• Not imagined pain.

• Not exaggerated pain.

• Not “it’s all in your head.”

Real pain, driven by a system that learned to stay in threat mode. For me, this didn’t replace the structural explanation.

It expanded it. The spinal nerves are irritated.

Before I go any further, here’s what this does not mean:

• It does not mean structural issues don’t exist.

• It does not mean you should stop working with medical professionals.

• It does not mean your pain is imagined or emotional.

• It does not mean this applies to every chronic pain case.

It does mean the nervous system can become conditioned to produce pain long after the original trigger—and that conditioning can sometimes be interrupted.

Collecting Data About My Pain

That realization didn’t eliminate my pain. But it shifted my power.

I stopped assuming every flare meant something was getting worse. I started examining patterns instead of fearing them. I began treating symptoms as data, not destiny.

The first experiment I tried was simple:

• Track what my pain did in response to stress, conflict, overstimulation or difficult emotions.

Don’t judge myself.

Observe.

This single exercise revealed more truth than three years of white-knuckling my way through symptoms.

Just When I Thought I Understood Everything Going On

As I tracked patterns, one signal showed up more than I expected: anger.

• Not explosive anger.

• Not obvious anger.

• Suppressed anger.

• The kind I learned to push down, smooth over or intellectualize.

• The kind that never felt “productive,” so it never got expressed.

I could feel sad or disappointed or frustrated. But not angry. I didn’t realize how much emotional suppression keeps the nervous system on high alert. Or how a system stuck in threat mode can amplify pain.

This is where Emotional Awareness and Expression Therapy (EAET) entered the picture—not as a fix, but as a way to safely bring suppressed emotions into conscious awareness so the nervous system stops treating them like danger. I’ll go deeper into that in my next article.

For now, what mattered was this:

• My pain wasn’t only physical.

• It was also tied to what my body had been holding onto for years without my permission.

As I started connecting these pieces—structure, amplification, emotional suppression—something shifted.

Not dramatically.

Not overnight.

But enough to feel real.

My pain hasn’t vanished.

But it’s no longer running the entire show.

I’m starting to recognize when my nervous system is amplifying a signal that doesn’t match the actual threat. I’m beginning to feel moments of relief that once felt impossible. And I’m learning that curiosity reduces fear far more effectively than willpower ever did.

This is early progress, but it’s progress.

Driven by Self-Advocacy

Self-advocacy got me each step along the way to these new revelations:

• Reading books

• Talking about my learning with my care team

• Being vulnerable in mind-body therapy work

• Self-awareness

Don’t let the future of your pain sit in someone else’s hands.

I don’t expect my path to become anyone else’s. But if you’re living with chronic pain and your story feels incomplete, it may be worth examining the patterns beneath the symptoms.

• Not to replace medical care.

• To add another lens.

Because sometimes the first step toward reducing pain isn’t certainty. It’s the willingness to question the story you’ve been living with.

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After about the third lunge, I felt a twang in my left hamstring.

I’ll give you the outcome from that class shortly and how I even got to the point of trying it. To get there, read on for my recent journey of intentional self-advocacy.

It’s hard to measure progress when you’re always in pain. But if I sit back and consider some of the differences between now and a few months ago, I have made a fair amount of progress:

• I can now walk down the stairs without holding onto the rail for dear life, always leading with the right foot.

• I resumed taking walks around the block with my husband and the dogs.

• It is easier for me to get in and out of bed.

How in the world did I suddenly make such progress?! The reality is that nothing about it was sudden. I worked hard, self-advocated, and didn't give in when it got tough. Here are three key actions I took:

1. Cast a Wide Net

After my disheartening visit at Pain Management, I sat in the nothingness for a short period of time. But my mind doesn’t stay still regardless. As I hit other doctors’ offices for follow-ups or routine visits, I asked for local doctor recommendations. The Chicagoland area has many astute medical facilities, some of which are still untapped for me.

Three doctors were recommended to me, with either a pelvic health or pain focus, at three different medical institutions. I started with the two that had closer drives and felt like better fits.

Doctor #1 - Lots of Prerequisites

The first doctor, from a reputable pain clinic, had many requirements before his office would discuss scheduling an appointment:

Getting the MRI scans from the Mayo Clinic was not easy. I got the runaround on the process to acquire these so it took longer than it should have.

Doctor #2 - Success!

In the meantime, I had an appointment with the second doctor at another reputable medical institution. This doctor was a delight.

She was pleasant, highly intelligent and was able to quickly discern where my current physical therapist was lacking. She and her team spent considerable time with me. My health background can be a bit complex to digest. She made a point of understanding it all (rather than keeping up with an unreasonable schedule) to make an informed recommendation.

I left her office, hours later, armed with two solid recommendations:

• What would ultimately be a challenge back to my physical therapist.

• A non-brain-intrusive way to help with pain at bedtime, which should a) ensure a better night’s sleep and b) improve how each day starts out after minimizing pain overnight.

2. Ending a Relationship with a Toxic Team Member

What would you if your lumberjack told you he will only cut down the trees in the lot if he can reach them without moving from his current position? Personally, I would find another lumberjack. And that is exactly what I had to do with my pelvic floor physical therapist.

Author’s note: I am deliberately not going into specifics as the details are not for the average reader. If you are experiencing pelvic floor pain and would like to understand this nuance, feel free to message me and I will share the details separately.

When I questioned my physical therapist (PT) on the corners she was cutting, she did some fast talking, but underneath that, I heard her say she was unable to do exactly what the doctor ordered.

Nothin’ But the Best

I reached out to a previous pelvic floor PT, who is the best in her field. Initially, I passed on her as I did not want to drive 1 hour each way to see her at the new location where she works. This time, I Google-mapped her new location and discovered she is only 30 minutes away (not 1 hour). I was able to get in within the month.

I had to be decisive and hold my health needs to the highest standards.

3. Circling Back to the Mind-Body Connection

During my annual trip to a health and wellness resort in sunny Tucson, Arizona, I met again with the mental health and wellness director. I was reminded to pursue not only psychological solutions, but specifically mind-body solutions.

Last year, returning from the resort, I was convinced I needed to find a therapist who could do ALL three of the techniques recommended to me.

Honing in on PRT

This time, I picked one of the three therapies and found someone who does it well. After narrowing it down to EMDR or PRT, I listened to podcasts and read articles online. Although I feel EMDR could work for me as well, PRT feels like a better fit.

I consulted (remotely) with a center in Oregon known for its PRT approach. Initially, they had a waitlist, and as a consolation prize, they offered a 4-week, 1-hour a week small-group course to better understand PRT and get a jump-start.

As soon as I leaned into PRT as the solution, I started feeling better. I know that sounds a little woo-woo-ish, but if you’ve been sticking with me on this journey, you know that I’m only going to go with the real deal.

PRT is a neuroscience-based approach that trains the brain to reinterpret signals of danger as signals of safety. This is a targeted investment to improve my health and my daily quality of life.

Leveling Up on Gratitude

Thanks to finding PRT, I am overflowing with gratefulness, as the greatest day of gratitude in the year rolls in. My three things look like this:

1. For the moments in the day when I notice feeling a little better, I am grateful.

2. For being able to attend exercise classes at the gym, however easy I take it, I am grateful.

3. For potentially finding a longer-term solution for the pain, one that I can share with all of you, I am grateful.

Self-Advocacy is the Key

The common thread in all three of these key actions is self-advocacy. Before every doctor or PT visit, I create a list of questions so that, while I’m in there and when my head starts to swirl because they said something I didn’t expect, I always have my pre-planned question list to fall back on.

I ask many questions beyond the direct needs for my care. See the list of sample self-advocacy questions for medical visits here.

A doctor on his own plan

And that Doctor #1, who had all the prerequisites? Guess what? He declined to see me. I didn’t know doctors had that perogative, but I guess they do.

It was a good thing I had more options in the hopper, or that kind of news could have been devastating and temporarily showstopping. I got that news the day after I visited Doctor #2 and had a plan. Thank goodness. Still devastating, but not showstopping.

Don’t give up. The need to advocate for myself to ensure my healing journey continues to progress and has become imperative.

My hamstring is fine.

It was these three key actions that got me into that workout class after feeling better. I did temporarily hurt my hamstring, but it felt better in 2-3 days. I was not working out hard, but getting my body moving. Movement that my body misses. Minor injury aside, I felt great after this class and another class that week.

I’ll dive into PRT more in the next newsletter. Stay tuned.

Reflect on what’s improving, even if it’s tiny. That’s how momentum builds. What are you grateful for today? Feel free to share in the comments below.

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We’ve all been there: walking to the car or the train after a doctor’s appointment, hitting the side of our head because we failed to ask an important question… or three.

It is imperative to plan in advance for any doctor appointment. Here are some sample questions that have been important for me lately. The essential questions for each of us will be personal to our own health journey.

• Do you have any doctors you recommend for pelvic floor pain or for chronic pain?

• Which local medical organization do you recommend and why?

• Have you heard about the off-label use of this medication for pelvic floor pain?

• Would you prescribe this off-label medication for me?

• Can I get on a waitlist to see this doctor sooner?

• How long after starting this medication should I notice a difference? And if I don’t notice a difference, when should I follow up with you?

• How soon should I see you again?

• Does this new medication have any side effects?

If you have any questions you feel would be helpful to others that are not already on this list, feel free to send me a note to get them added.

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Quite frankly, I hadn’t realized we were in the woods, but I was not surprised. The previous week, I saw him 3 days in a row so he could continue checking the progress of my healing wound and to re-wrap my leg.

What the heck happened, and why does the weird, random stuff always seem to happen to me?

Quick Background

My legs have a lot of pre-cancerous spots. They’re called Disseminated Superficial Actinic Porokeratosis, DSAP for short. They are caused by a combination of extensive sun exposure during childhood (playing tennis and running around outside in the hot Midwest summers) plus genetics. My sister has the same thing.

There are a few ways to treat DSAP. The easiest, in terms of treating as many spots at one time and the effort to execute, is a light therapy called Photodynamic Therapy (PDT). I did PDT on my legs twice already but had not yet gotten the desired effect.

When PDT works like it should, it recreates an unpleasant sunburn effect. The treated area becomes extremely red, the spots blister up, and eventually they peel and fall off. This process typically occurs over a 4-week window following light therapy.

Since my previous attempts hadn’t worked, after some research by my dermo and taking a page from my sister, who has done lots of PDT treatments, we decided to increase the intensity of the PDT treatment.

A week after the light therapy session, it became evident there was a complication with the treatment on my legs.

And Here We Are…

I had a couple of massive open wounds on my right leg (well beyond the size of the area where the sample was taken, seen above in the pre-treatment pic), and they were oozing pus.

My left leg also had open wounds and pus beyond the desired effect, but it was not hit as hard as the right. And my legs hurt. The physical pain was real and accompanied by swelling. My right leg was rather large.

By the following Monday, when it wasn’t getting better, it was time to take this seriously. We started treating it like an infection with antibiotics and a steroid.

And this is when my daily visits to my dermatologist started, for a few days in a row, so he could check the healing progress and personally re-wrap my leg each day.

Una, dosa, tresa layers of the boot

The leg wrap is actually pretty cool. It’s called an unna boot and has three layers:

• First layer: picture an Ace bandage soaked in calamine lotion and or zinc oxide. This wet layer goes on first and creates such a soothing feeling, like wrapping areas that sting in a cooling blanket, dulling the sting.

• Second layer: a gauze-like material that helps bind the layers and absorbs wetness from the first layer

• Third layer: an ace bandage wraps on top, providing light compression and making the whole thing presentable to the outside world.

My leg was wrapped from my foot all the way up to just below my knee. Little did I know I needed to get used to the leg being wrapped, as this process would continue for weeks. My original plan to complete this skin treatment prior to a very busy Fall got lost along the way.

And it was fortunate I have a leg cast shower protector from previous foot and leg surgeries as I couldn’t get the unna boot wet between visits.

I’ve learned that nobody wants to see pictures of the actual wounds on my right leg, so don’t worry, I will spare those photos from this article. If you’re a glutton for the gory and gross, let me know if you’d like to see.

Have Unna Boot, Will Travel

Before the busy Fall schedule, I had a spa weekend planned with my daughter. Would I really go with an unna boot on my leg? Why, yes, I would! I had to skip a few of the spa features, but that didn’t mean I couldn't still enjoy other perks.

I thoroughly enjoyed the ice cave and the relaxation rooms. My massage, less the legs, was still worth it, and I had a fantastic facial. More importantly, I enjoyed overdue quality time with my daughter, including a stop at a cheese castle on the way home. We were able to enjoy a quiet, relaxing time together.

It turns out I’ll still be wearing the unna boot on our family vacation next week. I sure didn’t expect that when this whole thing started. But then again, who am I to predict the future?

This is a slow-healing wound. Apparently, we cannot rush the process. This is a one day at a time progression. I guess the good news, it looks like I get to keep the leg.

In Retrospect

Looking back, it would have been a loss to cancel the spa trip just because I had an unna boot on my leg. It had crossed my mind, but I’m so glad I continued the course as planned. I mean, twist my arm to go to a spa.

And now, with a family vacation coming up next week, the emphasis is on family. The focus needs to be on spending quality time together.

Between the spa and the upcoming trip, I am getting constant reminders to live my life despite whatever is thrown at me. Don’t stop the merry-go-round because one of the wooden horses got knocked down. There is an entire carousel of horses waiting.

I may still be limping out of the woods, but I’m moving forward — one awkward, boot-step at a time.

Have you ever kept your plans despite a medical setback? How did it go?

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Welcome to my world, as I share a little of what I did to deserve this (nothing!) and, more importantly, how I used these unfortunate situations to turn my pain around. (Take note, as this pain hasn’t taken a turn for the last three years!)

Let’s take a step back.

I have a chronic pain issue that hit an even more major flare-up 3 1/2 months ago. I’ve been living with 10/10 pain daily. Not all day long, but it hits 10/10 at some point during the day. Usually once the 10/10 pain is triggered, it is there for the day or at least until I lay down in bed for a few hours to give it a break.

This.

Is.

My.

Life.

Dodging the pain, acknowledging the pain, accepting the pain. It pretty much sucks, but I have to find a way to live with it day to day.

I’ve done my homework. I’ve read the books. I’ve seen all the doctors. I travelled to Rochester, Minnesota, to go to the world-renowned Mayo Clinic for answers.

Three and a half months ago, I had a follow-up video visit with my case manager doctor at Mayo, who said, “This must be a flare-up”. This flare-up never flared back down.

Therapy of the Mind

Mayo recommended Cognitive Behavioral Therapy (CBT). Another reputable source recommended Eye Movement Desensitization and Reprocessing (EMDR) and Pain Reprocessing (PRT) therapies. I looked for a therapist who can do all three. Turns out that was a tall order, so I shot for as close as I could get and found someone.

She coached me through different therapies. I uncovered some well-buried traumas from my past and was reminded of some more blatant ones.

She helped me understand why the simple act of getting in bed could result in 10/10 pain, when starting at 0/10 before getting into bed.

Former trauma victims do not enjoy time alone in their own heads. Even though I was getting into bed with my husband, the act of going to sleep is a solo act. Alone time in our heads, for trauma victims, means time to get anxious.

Even if a trauma victim does not remember what happened, or even that something happened, the body remembers. And this surfaces in the mind in the form of anxiety.

In my conscious mind, I have no qualms about my bed. I love my bed and I love my husband who sleeps next to me in my bed. Again, it’s my unconscious mind that knows about the past that connects with my body.

Tricking My Mind

As a result of this newfound knowledge, I took new actions to see if I could convince my unconscious mind that I do feel safe now:

• Establish a regular bedtime. I was not always good about this in the past. Another symptom, I found out, of trauma victims. We tend to avoid going to bed for the reasons mentioned above.

• I love reading and I love reading in bed. I try to get into bed earlier than my husband and the dogs so I can relax with a good book before lights out.

• I got a cozy blanket for myself for my side of the bed. My husband has no interest in a blanket on the bed, outside of our comforter, let alone a “cozy” one. This is a win-win for me. I get the cozy blankie all to myself. The blanket is another way that I’m taking care of myself in a space that I want to feel safe, both consciously and unconsciously.

These techniques seem to help with both the nighttime routine and with pain getting into bed. Sometimes, my mind refuses to be tricked however. For example, let’s say I get a good head start into bed, by 45 minutes or so. By the time my husband and the dogs come up, I’m ready for one last trip to the bathroom before falling asleep. Lo and behold, I’m getting back into bed and there she is again. My not-so-friend friend, the pain.

All in all, I think I made some significant progress with this therapist. But at a certain point, it felt like our opportunity for progress ran out. Last week, we decided to pause our work together due to lack of opportunities to progress.

While I felt sad about this and wondered if there was more I could uncover with someone else, I did not see value in continuing to meet with this therapist. She did promise to send some names of other therapists that may be helpful for a second set of eyes on my situation.

Physical Therapy

I started seeing my pelvic floor physical therapist in January with weekly visits and corresponding weekly homework assignments from her.

Her therapies include manual treatment, stretches, red light, dry needling and only once I have the capacity, strength training. She is an immense proponent of red light therapy, which I’m still on the fence about. I want red light to be a solution and it’s a such a straightforward treatment. Just lie there and let the red lights do their thing.

The red light claim is that they use low-wavelength red and near-infrared light to enhance the mitochondria and produce ATP, repairing damaged cells and ultimately reducing pain. This process takes me back to chemistry, which was my worst class in high school! But now I want to understand it better.

All that said, using the red light once a week at PT sessions is insufficient for it to be effective. She has been encouraging me for a few months to find a low-cost red light solution for home use.

Red light sauna — sign me up!

I experimented first with a franchise chain that opened nearby. I was so excited to try this. I already pictured myself showing up twice a week at my private sauna studio.

My visit to the sauna studio was a letdown at best. I quickly realize that the one strip of red light from the ceiling will not meet my PT’s specific requirement: the light should be as close to your skin as possible. Sadly, I realize the studio sauna lighting is not satisfactory.

I’ve heard some gyms have tanning beds with red lights. I did not check them out. At this point, I realized that with a frequency requirement of daily, I needed to purchase an at-home solution.

As soon as I realized my PT was cutting me off from her services, I kicked it into high gear, deciding it was time. (Not sure why I couldn’t get to this point sooner, but grateful I finally did.)

My personal red light solution

I found a mat on Amazon that I like; it meets the minimum wavelength requirements of my PT (660-680 nm) and bonus, it was discounted to about $125. Of course, at this point, the hamster wheel was queued up to figure out why it was so cheap. Eventually, I decided that for $125, I could take the gamble (and knowing that Amazon’s return policy is pretty generous), it arrived the next day. I’ve used it every day since, which is about 2 weeks at this point.

If you’re still learning about red light therapy, please see more about it here.

If you’ve tried red light, let me know what you think.

Bye-bye physical therapy, for now

In addition to the daily red light, my PT sent me packing with a rigid daily regimen striving for recovery.

I am fully aware that the reason she needed to discharge me is insurance-related. The insurance company needs to see more progress over a period of time.

On the last day I was in the office with her, I convinced her to set up future appointments with me where we’ll open a new case. In October, assuming PT still feels like a useful tool, I have another series of 15 appointments set up to restart this therapy option.

In the meantime, my new red light mat and I will spend some quality time together.

Pain Management or Bust

I had a new medication I wanted to try (an idea my dermatologist recommended), which is an off-label use for the med. I researched and investigated this med, and the concept was endorsed by all my regular care team that I discussed it with.

My dermatologist would not, however, prescribe the med. He said go to Pain Management.

My neurologist would not prescribe the med. He said to go to Pain Management.

My primary care doctor would not prescribe the med. She said go to Pain Management.

Mayo also wanted me to go to Pain Management, for both the med and if I wanted to continue with nerve blocks.

I couldn’t hear the message any louder. Get to Pain Management.

Just like with meds, I always investigate doctors thoroughly before selecting who I will entrust with my care. With my neurologist’s referral, I researched the two doctors he recommended. They both had glowing reviews. And not just their 4.8 and 4.9 ratings (5-point scale), but the comments supported the encouraging nature of the doctors. Between the two, I picked the one whose comments I liked best. The most resonating review read,

He told me my pain was not in my head.

I got in to see him faster than expected. Even though his medical office is 30 minutes from my house, I enjoyed the drive, anticipating that this was the guy who was going to take my healing journey to the next level. I listened to my favorite Spotify playlist on the way there.

My excitement was squashed as quick as a mosquito on my ankle on a humid summer night as soon as the doctor walked into the room.

Doctor: We’re a spine center. (The word “spine” called out in a James Earl Jones slow and bellowing-like sound. The implication was —- why are you here).

Doctor: Again, we’re a spine center. And he said it a third time before he asked

Doctor: How can I help you?

His whole thing caught me off guard. I became distraught after this gigantic build-up that he was going to be my guy. I started crying. He ignored the fact that I was crying and continued with business. (Part of me appreciated not having to talk about the fact that I was crying. So this part was not so bad.)

I worked through my tears and was able to focus on the needs of being there. Eventually, we got around to medications and he agreed to own the script for the existing med I’ve been taking for the pain. More importantly, he was also willing to prescribe the off-label use of a med after he looked it up and understood the premise.

At last… a partial solution

Amazingly, after cycling through all the doctors who did not want to prescribe this med, now that I could try it, I knew the first day I took it that it was doing something for me. The med’s relief was noticeable.

By no means was the pain gone, and I still get 10/10 pain on most days, but I now have periods during the day with less to no pain where I can get things done. This med was doing more for me than any other treatment, except for the nerve block. It was tied with the nerve block.

Unfortunately, like the nerve block, this med has an unacceptable side effect. I have another med I can flex the use of, and with that, I am currently managing this side effect. It requires careful attention and is administered 3 to 4 times a day, making it a closely monitored treatment.

With the doctor’s inappropriate bedside manner, I had half a mind to kick him to the curb. However, in the short term, I needed him, so I played nice.

Could all these events really have occurred within a week? With each event throwing something different at me, my resilience got stronger. It was like a rubber band getting pulled back so far you wonder if it’s going to break. But then it releases and you see it bounce back. Just call me… rubber band.

I am grateful to recognize the synchronicity of these events. Both my therapist and physical therapy seem to follow a natural progression, which coincidentally happened the same week. And the big news, fortunately, I was able to get a medication that is helping with the pain.

Something is helping with the pain. And I’m taking this med because I persisted. I did not take no for an answer. I continued to pursue it until I got what I wanted. The rubber band has spoken.

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Know that the claims are still being assessed. In the meantime, many PTs, spas and more offer RLT. Not every use below has been proven. Here are the claims:*

• Stimulate collagen production

• Increase fibroblast production, which makes collagen

• Increase blood circulation to the tissue

• Reduce inflammation in cells

• Improve wound healing

• Reduce stretchmarks

• Reduce wrinkles, fine lines and age spots

• Improve facial texture

• Improve psoriasis, rosacea and eczema

• Improve scars

• Improve sun-damaged skin

• Improve hair growth in people with androgenic alopecia

• Improve acne

• Reduce cancer chemotherapy side effects, including oral mucositis

• To relieve pain and inflammation associated with ankle tendonitis, rheumatoid arthritis, carpal tunnel syndrome and osteoarthritis of the knee

• To prevent cold scores from herpes simplex virus from recurring

• Improve Weight loss

• Cancer removal

• Cellulite removal

• Remove depression

• Remove Seasonal Affective Disorder (SAD)

• Improve muscle pain

• Improve pain with chemotherapy meds

• Improve joint pain

• Dementia

* Cleveland Clinic https://my.clevelandclinic.org/health/articles/22114-red-light-therapy and Brown University: https://www.brownhealth.org/be-well/red-light-therapy-benefits-safety-and-things-know

I’ve been living with this chronic pain, at different levels of pain over time, for almost 3 years. Every week that goes by, I think, maybe this will be the last week. Maybe this next thing that we’re trying will work. I am constantly optimistic about this situation. Naive? Sucker? Stupid? Anyway you look at it, not finding a solution is not for lack of trying.

I write this blog to show how I live an amazing life despite whatever challenge I’m facing. In my dreams, I’m showing you how to as well.

Let’s take a look at all the events I was able to show up and be present for over the last few months, despite experiencing excruciating pain at some point. Before each event, I gave myself permission to not be perfect—just to be present.

Following these events, I’ll go into more detail about the tools I’ve learned and the treatments — all part of how I was able to still live my life for these events despite being dealt a bad hand of cards.

Event #1 - Sick Dog

Our oldest dog went through kidney failure and more. We tried helping her through it. We spent two months going to extremes: administering subcutaneous fluids almost daily and taking her to specialists.

Ultimately, Minnie didn’t make it. She passed away between Events 2 & 3. The bond that dog and I built over the last 10+ years was tighter than a runway model’s fancy dress. Yet, I needed to be there for my husband and the kids, who all had a deep-rooted, 17+ year relationship with that crazy dog.

This was not a planned family event, like the others on the calendar, but it was one of the most significant events our family experienced together since my husband and I married almost nine years ago.

Event #2 - Graduation

We left for our son’s graduation, not knowing if we would receive a call while in Lawrence that Minnie had passed. I ensured I was present for our son’s architecture master’s graduation at the University of Kansas.

Since I was never able to have kids of my own, I feel honored, proud and humbled to have the opportunity to be a part of milestone life events like this. This family event involved travel to Lawrence, Kansas. We had a 3-day, jam-packed schedule of graduation events — all of which were very exciting and fun.

How could I ensure I am present and not miss any of the varied events?

I’m not sure if it was a mental trick or what happened. But somehow, I made it through this lineup in 90+ degree heat. My pain did not start to kick in until towards the end of the second-to-last event.

Having this opportunity in my life is something I do not want to miss due to a physical constraint. So I didn’t. There’s no doubt that a bit of help from God also played a role, allowing me to participate in these events. And Minnie held on through this occasion.

Event #3 - Alzheimer’s Conference

Three weeks later, I had the opportunity to join other advocates in Washington, D.C., for my annual trip to advocate for Alzheimer’s. This event is so invigorating and inspiring. It's a must-do for me, even though it involves more travel and even further travel. I was to be there for almost a week. Could I keep pulling it off—making it through another high-energy week without my body revolting?

Of the whole week, Capitol Hill Day was the day to prepare for and watch. It is the most exciting day and yet the most physical day. It’s the day when 1,100 advocates from across the country meet with their local senators and congressmen/ women in their DC offices.

For the Illinois delegation, we are scheduled for 5-6 meetings each with a group of 7-8 advocates. The meetings are to tell our Alzheimer’s stories while we ask for more funding for Alzheimer’s reserach and to sign on with the latest ask that the Alzheimer’s Association has developed.

Somehow, I made it through Hill Day, which involves a lot of walking, back and forth to all the reps’ offices, without feeling pain until the last meeting. Thank you, God, for joining us that day as well.

Event #4 - Graduation Party

As if that weren’t enough, just two days after returning from DC, we hosted a graduation party in our backyard for our son for those local to our home area to celebrate with him. I planned the entire party before I left for DC. It was ready for execution, but would I be able to make it through the actual day of the party?

Would the pain knock me out before the guests even arrived? Would I forget something basic like plates or drinks? Was I insane to host a backyard party two days after flying home from DC?

I almost canceled twice. Not because I didn’t want to celebrate my son, but because I didn’t know if I could stand through it. Literally.

Fifty-ish people RSVP’d and fifty-ish people showed up. My pain cooperated most of the day, but at a certain point, I finally had to concede to the pain and get off my feet—— and on to an ice pack.

Sitting on the ice pack, I was able to enjoy myself and have fun at a party that I was hosting. That doesn’t always happen when I’m in host mode, quietly measuring my worth in how smoothly everything runs.

Event #5 - Move to Omaha

I barely had time to recover. This time, I had 1 1/2 weeks before our next milestone event: moving our son to Omaha, where he will start his first job after graduating as an architect. Another exciting life event that I was determined not to miss. I was given strict orders by my physical therapist to do no lifting. But there is still a role for organizer, food planner and cheerleader.

This was a significant move, considering it is truly his first adult life experience. Which will be his new grocery store? What will be his go-to breakfast spot on the weekends?

I opted out one day. I stayed back on Thursday, so I missed loading up his school apartment, but I certainly was there for the unloading on Friday in Omaha. I had the very important job of making sure the contents of the truck were safe as load after load was taken up to his new apartment.

What could possibly be next?

These 5 events, spanning from April to June, were all very significant and meaningful. Wouldn’t it be nice if such important events could be spread out over a longer period of time? It would give us the opportunity to truly internalize and appreciate the events to their fullest potential.

As I wrote about in my last newsletter, and after a major flare-up of pain, I pushed my doctor hard to get a nerve block. Knowing the line-up of events coming in my life, I knew I would need something with a big kick to get me through it all, besides having a hopefully powerful tool for life.

Event #2.5 - Nerve Block

The nerve block injection took place at the Mayo Clinic the day before I left for Washington, DC (Event #3). I was sure that once I got a nerve block done, that would be the solution that would tip the scale and relieve the pain.

Three weeks after the nerve block, the results are sketchy. I’m having a hard time evaluating the results due to a messy side effect. I do believe that the pain would have been worse, for example, on Capitol Hill Day in DC, but I’ve had a lot of days exactly the same as before: high levels of pain requiring reactive actions to try to reduce the pain. As of now, the jury is still out on the nerve block.

Tools that I use to help with the pain

I survived each of these back-to-back events with my toolbox, which I am now sharing with you. Here’s what I relied on—my go-to tools, refined through trial, error, and necessity:

• Distractions - I find an activity that I get so absorbed in that I forget about the pain. Often, after a certain amount of time engaging in the activity, the pain will be reduced or sometimes disappear. For me, some of these activities are puzzles, painting and reading.

• Mindfulness - I have not succeeded yet at regular meditation; however, here are some mindfulness tactics that do help:

  • Music - I lean into faith-based music to feel God’s presence. While I still don’t understand why God would let this pain invade my life so much, I also know there is a plan greater than me that I don’t know.

  • Gratitude - I write down 3 things I’m grateful for each day.

  • Cognitive Therapy Approach - Acknowledge my pain. Notice how I feel in the moment. Recognize that I am safe. I am ok.

  • Diaphragmatic Breathing - Inhale deeply for a count of 4. Feel belly expand. Hold breath for 7. Breath out for 8.

• Set phone timers - To ensure I take my meds on time, both pills and the powder mix that improves the consistency of my stool. Some of my meds need to be taken in a specific:

  • Sequence.

  • Amount of time before/after eating.

  • Amount of time before/after taking any other pills.

  Since my days do not always start at the exact same time, I revisit the timing for the phone timers each day.

• Sleep - If I don’t get a minimum of 7 hours of sleep, I will have a high-pain day.

• Moderation - While I remain active with meaningful family and personal activities, I also say no to many things and proceed with caution in the activities I do.

  I need to preserve what I’m capable of to ensure I can show up at the right times.

• Regular stretching - Either at strategic times prior to events or as a reactive response to pain. My PT has prescribed specific stretches based on my condition.

• Ice - When needed, 10-20 minutes.

• Epsom salt baths - I have an article about Epsom salt baths on my homepage. Reducing inflammation is one of the many benefits of these baths. This is a tried-and-true, time-tested tactic. My article on this topic (linked here) includes some how-to tips.

Be aware that none of these tools works by itself. It takes a combination of some of these, sometimes many of these, to move the pain needle.

I was somehow able to survive April through June. It was not perfect. In fact, it was quite imperfect. But I survived. I showed up. I was an engaged and present member of my family and I represented my family (DC).

While this is not the life I planned (a pain-filled one), I am still striving to be a part of it. In parallel, I am working on longer-term solutions as I don’t plan to live like this forever. Success used to mean hosting the perfect party. Now, it means being there—even if I’m on an ice pack.

I hope that my toolbox can help you navigate whatever you are going through. Drop a comment or a note if any of these tools resonate or if you have any other ideas.

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We were outside taking pictures at selected locations on campus before going out for a celebration dinner with architecture roommates, classmates and their families. I scanned my phone for anything new and time-sensitive.

Boom — notification from the Mayo app.

My nerve block was scheduled for Thursday, June 5th. What? That was quick, and the date is coming up quickly — just under 3 weeks away.

How did we get here, how is Goldilocks involved and how did persistence play a role?

Insistence on New Solutions

On May 6, my pelvic floor pain hit an all-time high that I didn’t know could be achievable.

This time, the stabbing took no breaks. I couldn’t walk to my bed from the master bathroom.

My bar of what constitutes a pain level 10 was raised. (Are you kidding me? How could it possibly get any worse? But it was. How in the world can I live like this?) I never know when it’s going to strike.

It is literally stripping away my life as I know it. I started to feel defeated.

Finding the right treatment for this chronic pelvic floor pain feels like Goldilocks tasting the porridge — too hot, too cold, never quite right. And we can never quite find the right treatment to solve my pain.

After re-reviewing Mayo’s write-up from last October, the doctor concluded that if none of these tactics work, we might consider trying a nerve block.

What is a Nerve Block?

A nerve block is when a medication is injected into a nerve and you basically feel nothing in that area until it wears off.

After one of my foot surgeries about 7 years ago, the doctor told me they had done a nerve block during the surgery to help with immediate post-surgical pain. He warned me to be really careful with my right leg until it wore off (another 5-6 hours) as I was feeling nothing from top to bottom on that leg.

I could inadvertently turn the leg in an awkward direction without even realizing it, while the nerve block was still active. From that experience, knowing how powerful a nerve block can be, I became excited about what it could mean for this pain. There are other nerve block types that can last longer than 5-6 hours. They can last months. (Imagine, the pain could be blocked entirely!)

Medication Option

The other option I wanted to pursue is one that my dermatologist recommended: a low dose of a medication used to treat alcoholism. This med blocks the pain / nerve receptors — and it’s been found to stop pelvic floor pain 20% of the time. I locked onto these two approaches and became determined to try one or both of them.

I honestly thought the medication one would be the easiest to accomplish, but I pursued both equally because… who knows?

Mayo pushed back on writing a script for the medication. Their stance from the beginning has been that they will determine the plan and they want my local team to execute.

Dermatology to the Rescue?

A new member of my local team, my dermatologist, made the suggestion for the medication when I threw this new and random question at him during a regular 6-month check-in. (Hey, Doc, uncomfortable question time: I’ve heard that skin issues can be involved in solving pelvic floor pain issues.)

He seemed very excited to address a non-routine question and he gave me a few ideas, including this medication one. He also rightfully suggested taking this back to Mayo, since they are overseeing the case, and that if they approved, he could write the script.

When I circled back to him, with Mayo’s consent, he was no longer willing to own this approach. (Persistence applied #1 - Are you kidding me?)

A Dead End… For Now

After more questioning, he said he could prescribe for the “testing phase,” but that the doctor treating the underlying issue should really own the script. (Persistence applied #2 - Ok, that makes a little more sense, but why not just own the whole thing? Instead, this will make this more complicated for me to execute.)

I do not yet have a doctor outside of Mayo who is agreeing to take ownership of the overall issue, so this idea is currently at a dead end until I apply more persistence elsewhere.

Nerve Block It Is

Taking me by surprise, the nerve block idea has made more traction than the medication.

Knowing that Mayo would default to wanting my local team to execute, I thought through how this could work. Pain Management is the department that executes nerve blocks.

During a previous iteration of this chronic pain issue, I saw a local pain management specialist. It took 5-6 months to get an appointment and that was just for a consult. After that, the nerve block would need to be scheduled.

With my primary Mayo doctor out of the office for most of May, after my persistent messages and calls, the on-duty doctor of the day submitted an order for me to get a nerve block. (Persistence applied #3 - Ok, an order was submitted. This feels like progress… yay!)

I did a double-take at my computer screen …

displaying the Mayo online patient portal message stating a nerve block was ordered. Ok, but how long would it take to get on their schedule?

Amidst all this chaos, we are celebrating in a joy-filled household for our son’s Master’s graduation. We had a long 4-day event schedule in Lawrence, Kansas. It was smack in the middle of these events that I caught the notification on my phone stating that the nerve block was scheduled. And, at the time, it was only 3 weeks away!

Schedule me for any date, just schedule me. Oh, just not THAT date!

I wanted to jump for joy, but jumping is not in the cards for me with this pain. Also, I had a lot of questions.

The Nerve Block… And the DC Trip Collision

At the top of the list is the fact that I am supposed to travel to Washington, DC, for my annual Alzheimer’s Forum trip on Friday, June 6. Would I be able to go to Rochester, Minnesota, for this procedure on June 5 and travel the next day to DC?

Would having a nerve block the day before the start of this trip potentially interfere with my ability to travel or to be able to keep up (even though my ability to keep up is already at risk with the existing pain)? Would it be any worse than it already was going to be?

It should be easy enough to get answers to questions about my scheduled procedure, right? Turns out, no. There is an awkward gap when one department submits the order for a procedure and it’s another department that schedules it.

Not a Patient Here, No Questions Allowed

If I’m not an established patient in the Pain Management Department, I'm unable to send a message via the Mayo online portal, which is typically easy to do. Ok, so I called to get my questions answered. (Persistence applied #4 - It was a relief to be able to talk to a person in Pain Management.)

The Pain Management rep seemed bound by the rules. However, he took down the questions he could not answer so he could send them to someone who could answer them.

He made a point of telling me that I still might not hear back though, as there is no process for anyone to reply to someone who is not an established patient in the Pain Management Department. (Persistence applied #5 - How frustrating! Rather than help a suffering patient, this guy was more interested in adding to the notes, telling me that I might not get a response since I’m not an established Pain Management patient.)

While I had a ton of questions, the top couple of questions were about traveling the day of and the day after the nerve block.

For Goldilocks, the bears’ chairs were either too big or too small. She could not find just the right fit. Would that be the case with this new, seemingly silver bullet solution?

Have Nerve Block, Will Travel

It turns out it’s fine to travel the same day, which would be needed for me to get home on time on Thursday to still make my flight on Friday.

Also, nerve blocks have variable timing in terms of how long it takes for them to take effect. It could be immediate. It could be hours or days.

Many of my questions were answered via a portal response message, however, I still need clarification on two items to know that it is worth it to travel to Rochester:

1. I have an existing nerve stimulator in my right hip for an unrelated issue. There are wires that touch some of my nerves and lead back to the stimulator. Does the doctor performing the nerve block need to know where these wires are to avoid them?

   1b. And I’d like to confirm that they still believe the nerve block is a good idea, even with the existing nerve stimulator that I have.

2. The order was written to put the block on the pudendal nerve. At first glance, that feels like the right nerve to block. But is it?

   Based on my physical therapist’s experience working with me, there are three other nerves that are better candidates than the pudendal nerve, with the gentiofemoral nerve being her #1 pick. (Numbers 2 and 3 are the ilioinguinal nerve and the hypogastric nerve.)

Questions That Still Need Answers

I made yet another phone call to the Pain Management Department at the Mayo Clinic. I got someone completely different this time, and that made all the difference. (Persistence applied #6 - What a breath of fresh air, to feel validated and get the help that I need!) She apologized for the fact that a pre-procedure phone call had not been scheduled yet and she immediately set one up for the next business day, which at this point was Tuesday, May 27. I’ll still have over 1 week’s notice to plan the trip, if Rochester is a go.

Six times!

And I’m not quite there yet, but I do feel good that I will get the necessary answers on Tuesday and that the nerve block will be a go. (Always the optimist.)

Persistence and the Three Bears

The moral of this story is to be persistent… like Goldilocks. I don’t think anyone is more persistent than that girl who shacked up with three bears. Whether the bed was too big or the chairs were too short, she spoke her mind, all in the face of bears. Bears are known for eating people. Ok, I know this is a fairy tale, but those tales are there to teach us lessons, so bear with me on this.

I’ll let you all know if this fairy tale has a happy ending or if I’m still fighting bears! Stay tuned.

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At the time, I agreed with her recommendation. Since then, I have a new perspective: Let’s stop living with status quo and take more extreme measures.

After re-reviewing Mayo’s original recommendations (from back in October), I was reminded of what to try if the original recommendations don’t work. I want to do a nerve block. I understand that it may or may not work. I’m ready to try new things and take drastic measures. I’ve been patient enough trying all the things. It’s time to move to the next level.

You’ve Got Nerve

I talked with my physical therapist about which nerve we would block. Quick to say that she would not be the person to identify it (it would be the pain specialist doing the nerve block), while at the same time, she was doing treatment, Yow, I called out. That’s it — that’s the nerve, she said.

I question how someone else will find the right nerve(s) like she is doing organically. I captured the name of the nervy culprit. There are 3 branches of the nerves involved, so it’s still not straightforward.

A nerve block feels like a test. Maybe it will work and maybe it won’t. Maybe we’ll get the right nerve and maybe we won’t. Maybe I’ll feel relief from this nightmare pain and maybe I won’t. Maybe, maybe, maybe.

Time to Make Some Changes

During this period of intense pain relapse, I’m leaning into self-care. I re-instituted Epsom salt baths into my plan and I’ve made a big decision about eliminating some of my volunteer activities. I need more breathing room, literally and figuratively.

I wrote an article Won Epsom salt baths to give you all the necessary info, including benefits and how-tos. For your detoxification and relaxation, check it out via the Epsom salt bath links here.

Hanging over my head has been developing a fundraiser in honor of my mother for the benefit of the Alzheimer’s Association. As I dig into my past more, to discover this blocked-from-my-mind trauma, I have uncomfortable feelings about doing a fundraiser in honor of my mom. I can’t reconcile feelings vs fundraiser right now.

My purpose vs the greater purpose

I still love my (deceased) mother and love so many things about her. And I know in my heart she only acted the way she did because of her learned behaviors from her upbringing.

I know the fundraising will benefit the Alzheimer’s Association and help us achieve the greater goal of finding a cure.

All that said, knowing that I also need some relief from excess commitments right now, this feels like the logical choice to step down from.

I’m Not Letting Go Completely

I will continue my advocacy volunteer role with the Alzheimer’s Association. I will still:

• Meet directly with elected political leaders in the community to encourage them to vote for Alzheimer’s initiatives by telling my Alzheimer’s story.

• Go to Washington, DC once a year to a conference organized by the Alzheimer’s Association.

• Receive local assignments throughout the year, like posting tweets on social media weekly, writing letters to the editor for my local community paper and collecting signatures to show our members of Congress that their constituents care about these Alzheimer’s initiatives.

It’s important to me that my pain not take away every single thing that I identify with myself today. Knowing I can still do this role is an integral part of making this decision.

Pain Patterns That Are Part of the Takeover

The takeover is of me. The pain has taken me over. The pain has four particular patterns in my life right now.

Pattern #1

The pain gets over the top bad as soon as I get into bed at night. I can’t explain this one yet. I’ve added to the agenda to discuss with my therapist this week. More to come.

Pattern #2

The pain gets more and more difficult as the day goes on. I typically keep a pretty healthy line-up of evening activities, between connecting with friends and meetings at church. All of my evening activities were cancelled for the last 2 weeks due to my pain.

Pattern #3

Taking a shower increases the pain. This one is hard to explain and may get a little too nitty gritty for my average reader, so let’s just table this one as is for this writing.

Pattern #4

There is no pattern. The pain can randomly show up at any time during the day without explanation or reason.

These patterns show no escape from the pain throughout the day. It hurts to walk, sit, bend down, or do just about anything. Hopefully, the flare-up will clear soon!

The Thief Called Pain

Speaking of the pain, it has taken over my life. I feel like I’m losing who I am and having a say in what I can do. I am also starting to get pissed off.

The pain is a thief who takes things away from me. Most notable is time. Also money. And also, it takes away my emotional freedom. And it takes my ability to engage socially.

It steals. It steals my quality of life.

I’m ready to fight back against the pain. Let’s no longer take the pain’s word for it. We will hit it hard with whatever tools and options we have.

THIS is why I’m looking for a nerve block. I’m looking for quick hits and options that can rule out other options.

The nerve block can still be hit or miss. If it doesn’t work, that would mean we just might have hit the wrong nerve. Maybe it’s a different nerve, or nerve branch, instead.

In the words of the great Maya Angelou:

You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.

I can’t move forward without trying something different.

Prioritizing Self-Care

In summary, one of the self-care levers that I’m going to pull is stepping down from my fundraising and community engagement role. The most considerable relief this gives me is that I won’t be planning a fundraiser this year.

I also won’t be looking to engage small local businesses in the Alzheimer’s Walk and I won’t be running the Family Fun Zone booth at the Walk this year. There are fun parts of this commitment that I’m going to miss. And that made this decision even harder. But in the end, I need to do this so that I have less activities and less commitments that people are counting on me to complete. Less, less, less of everything.

Stage Your Own Takeover

It’s time for me to stage a takeover of the pain. It’s pushed me to a new limit where I’m throwing up a roadblock. Pain - you piss me off and I’ll show you a thing or two.

I’ll continue to pursue the nerve block or something else new. I’ll give myself the freedom to prioritize self-care. Stepping down from my Alzheimer’s volunteer commitment makes more space for taking care of myself while eliminating excess stress.

I’ll take more Epsom salt baths, have more time for writing and activities I enjoy that don’t add stress.

And I hope I inspire you to stage your own takeover, whatever that may be for your situation in your life.

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What is this hype all about?

Why Epsom Salt Baths

The benefits of Epsom salt baths are many. If you suffer from any pain, this tool should be at the top of your toolkit.

• Relieve muscle soreness

• Reduce inflammation and swelling

• Promote relaxation

• Soften and moisturize dry skin

• Promote healing

• Improve digestion

• Enhance sleep

• Detoxify

Conditions that an Epsom salt bath can help:

• Arthritis

• Sunburn

• Ingrown toenail

• Stress and anxiety

• Eczema and psoriasis

• Post-recovery workout

• Bruises

• Sprains

• Headache

• Insomnia

• Hemorrhoids

• Constipation

What Is The Magic About Epsom Salts?

Epsom salts contain magnesium, which can be very healing. (I use magnesium cream on my legs for cramps and spasms. I also use it on my legs when I can’t sleep and as an added kick for restless legs, couldn’t help the pun.)

The Epsom salts are said to pull the toxins out of your skin while in the bath. (Yes, it is common to feel a bit drained after one of these baths.)

Epsom Salt Baths 101

If you’re convinced an Epsom salt bath is for you, or even if you’re skeptical and would like to try it out, here are a few basics I’ve learned over the years:

• Combine your Epsom salt with warm water

• Light a candle to contribute to the relaxation experience

• Try to ensure you won’t be interrupted — this should be a relaxing experience

• How much salt depends on the size of your tub

  • 1-2 cups is typical

  • For larger jacuzzi-size tubs, 2-3 cups

  • Use the higher end of the recommendation for more benefits, but more is not necessarily better here — Stick to the recommended amounts

• Soak for at least 20 minutes

• Good opportunity for some mindfulness and meditation

• Get out of the tub slowly as the salts drain you a bit

• Be sure to rinse the salt off afterwards in the shower

• If you don’t have time for a full bath, try a foot soak for relief, especially if it is your feet that are sore.

Epsom Salt Cautions

As usual, people with some conditions should exercise caution before jumping into the tub with Epsom Salt.

• Open wounds or infections

• People with diabetes or kidney disease

• Plan the timing of your bath when you know you can relax afterwards. The bath can make you tired.

Another Caution - Jacuzzi Tubs

• Epsom salt is not good for Jacuzzi jets

  • My tub is a Jacuzzi, so I use it exclusively for Epsom salt bath and never run the jets during my baths.

  • I use Jacuzzi jet cleaner regularly to keep the jets clean and free from bacteria (which could derail the purpose of my bath).

It’s been a week.

At the start of the week, I almost signed myself up to change to bi-weekly newsletters to make sure I’m keeping my health as top priority. Looks like I’ve managed to complete this week’s newsletter after all. It’s about 24 hours later than unusal and based on this week, I’m pretty happy with that.

If you’ve been following my health journey, so far you’ve heard about specific well-being events. What I don’t tell you, and you may or may not organically realize, is that I have a host of doctor, PT and other health-related appointments every week. If I have one day without a medical appointment, it feels like a day off.

Here’s a taste of the list of medical care team professionals in my current rotation:

• Primary doctor

• Physical therapist

• Gynecologist

• Speciality gynecologist - specializing in pain

• Urogynecologist

• Dermotologist

• Therapist for cognitive work (CBT, EMDT, etc)

• Dental (too many root canals and gum grafting recently)

• Neurologist

• Pulmonologist (need to do a sleep study)

• Orthopedic surgeon (had bunion surgery last year, plus a follow-up in Feb of this year)

• Orthopedic (for hand joint issues)

• Gastroentrologist

• Stretch Lab (need to restart, as this is very helpful)

This list, while embarrassing to look at how long it is, is also exhausting to look at and to manage. It is no joke that managing my health is a full-time job. I hope to get to a point where a lot of these appointments can be scaled back and I can live a happy and healthy life.

So this week was a week, and as part of sharing my health journey, I think it’s appropriate to share what happened, as well as how I’m coming through on the other side despite the insanity of the issues.

Let’s start at the top.

Issue #1 - 10/10 Rating

Typically, a score of 10/10 is a good thing. Except when we’re talking about the pain scale. Over the last ~2 weeks, my pain, which had been improving, was bouncing up to a 10 way too frequently.

At first, I was just in reactive mode. Doing whatever actions I could to reduce the pain. Sometimes, just resting in bed, not able to do anything else. Sometimes, up and about, but only able to do enough to skate by for the day: hoping to make it to whatever pre-planned medical appointments I had for the day, trying to do PT exercises and eating remotely healthy, and doing some comfort eating, because, well, why not.

After a week or so, it dawned on me that this was a spike in pain levels from where I’d been. Maybe there was an infection involved.

The next sequence of events is a string of conflicting results of testing in the women’s health area:

• Yes, infection.

• No, not an infection.

• Well, maybe it’s something.

And that picks us up where we are now. When I started writing this article, I thought I knew, definitively, what I was dealing with. Now, I’m in the maybe stage.

Issue #2 - Older Dog Scare

Our empty nest at home includes 3 doggies, who have been said to lead a royal life. The oldest is a 17-year-old Chihuahua mix and still wrestles with her 2-year-old Pomsky sister.

Minnie has been aging very well, but in the last week, we found out that she now has some specific concerns we need to address. It’s an aging thing. It would happen eventually. And I’m familiar with the aging things.

All that said, it’s been a rough week at home. Similar to my test results, the Minnie situation was across the board and not always clear.

At this point, we don’t know exactly where things stand, except that she ended the week on a good note. We are taking her to a specialist next week to get more information.

Issue #3 - Dental Distress

Chronologically speaking, this was the first event; however, the ramifications lingered all. week. long. I had dental surgery. Gum grafting is not a pleasant experience. The periodontist takes gum tissue from the roof of your mouth and augments the gum tissue where it’s receding under your teeth.

He finished in an hour, which felt like record time. My upper left quadrant was so numb, I did not feel any of the cutting and stitching.

He cautioned me You may bruise a bit since your skin is fair. I’m going to show him this picture. It was not comfortable going out in public for a lot of the week. I think the bruising will be resolved enough by Easter that I can make an appearance in some spring outfit that might still fit me.

The long and the short of this one is that the impact was an underlying factor throughout the entire week:

• Ate only soft foods for the first 1-2 days

• Skipped events due to tiredness post the traumatic surgical procedure

• Chewed only on the right side of my mouth all week, and will continue until my return visit next Thursday

• Skipped events due to bruising

The Leapfrog Effect

When I started this article, I thought I was looking at different outcomes. The fact is — outcomes are only true for the instant in which they are declared. It’s hard to claim that your baseball team is the best in the league a week after the championships when another team beats your team the following week.

I thought I had an infection — which was actually my best-case scenario. Having an infection would mean that my day-to-day chronic pain was not getting worse and the 10/10 pain was incidental to the infection. Now, we are not sure that is the case.

With Minnie, we are not sure where things sit, but we are riding a lot on the specialist visit next week.

And with my dental work, it just has to run its course. The bruising is almost gone. The stitches come out on Thursday. And slowly, I will start to work nachos back into the specialty dinner option soon.

When the outcome is what we want it to be, it’s easy to say — everything turned around for the better. I leapfrogged over the 4 steps back and leapt an extra 2 forward!

Quantifying the Outcome

But what about when the results are not what we want? Or even worse, sometimes, the results are just unclear? How do we quantify the outcome to declare

• An amazing result

• Things are going well

• I can handle this

• It may not be what I wanted, but I’m gonna figure out how to make this work and how to be ok with it.

Let’s look at that last outcome. This is pretty much where things landed for all 3 of these issues of the week.

Thinking it through:

• It does me no good to be upset (mad, sad, generally disgruntled).

• The result that happened is where my life is right now. I can’t deny that. But I can embrace my life for what it is.

• I don’t have control over the outcomes. I only have control over how I react to those outcomes, how I behave.

This is where I am.

Turning the Backwards Forwards

I cannot change what’s happening, even if I cry out with all sorts of emotions. Emotions are valid. Having feelings is valid.

But when it comes down to it, once I get through the emotions and the feelings, I need to accept the outcomes for what they are.

I also know that God’s plan is not one that I can change. Whatever God has laid out for me has a future impact that I won’t understand until the future impact shows me why. If it ever does.

So, even though these outcomes did not land where I would have chosen, I can leapfrog six steps ahead if I choose to let my mental perspective accept the outcomes. This acceptance allows me to move forward despite what may feel like a lack of progress.

When I chose to

• Publish this article even though I didn’t get the infection test result I was hoping for

• Prepare cooked food for Minnie and look up other dietary needs online for her

• Eat sushi again tonight because it’s a softer protein

I’m choosing to accept these circumstances and live life despite the setbacks. I’m not going to let the things out of my control impact my ability to move forward in life and enjoy it.

When I look at life like this, I can leapfrog over the backward steps and even move forward additional steps.

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My mother apparently had quite a sweet tooth, which I never knew until she had Alzheimer’s*. I would take her out to eat at a restaurant and next thing I knew, I would see her pouring a bowl of those candies on the reception desk into her purse. It was like dealing with a child in an adult body.

To look at her, no one would know of any illness. To watch her barrel through the candies in the dish, well, that would be another story. But most people didn’t see that.

Pants and Another Pair of Pants

Mom’s social skills were the last to go. She could go to a party and skate by with no one being the wiser that, earlier that summer day, she dressed herself in wool pants and put another pair of pants on as a shirt and a sweater on top of that. After Dad sending her back, and a few more attempts, he had to redirect her misdirected wardrobe attempts and pull out some more appropriate clothes for the day.

The invisibility of the disease did a huge disservice to my mom’s overall health and to our ability to help her through it as a family.

What Did You Just Say

We could not get a diagnosis out of the doctor. I was baffled. Clearly, she had an issue. She could not remember the conversation we had just had. Her brother died from Alzheimer’s at the age of 59. She had all the symptoms. What was wrong with her neurologist that he would not make the diagnosis?

To pour salt on this non-diagnosed wound, the same doctor prescribed her, what at the time (it was approximately the year 2005), was the best thing for dementia —- there were medications that masked the symptoms. They did not slow the disease down, but they would let the patient live without the symptoms longer.

My mom knew what was happening… at first

I was the most vocal one in the family about the fact that Mom had all the signs of early dementia and her doctors were doing nothing about it. My other family members were split between no way, maybe and maybe.

Mom herself? She was in complete denial. By design. She knew her brother had died from it. And she knew that the longer it took for her to believe it, the longer it would take for her brain and body to fully surrender to the disease.

Early enough in the disease, this is possible. And once mom had heard that you can play a mind over matter kind of thing with Alzheimer’s, she was sold. She decided what could it hurt to try it.

How do I know she was intentionally doing this? She told me. It was the only time I knew that she knew she was getting Alzheimer’s. This one conversation. Then it was like she took a piece of paper with the info on it, crumpled it up and swallowed it. Never to be seen or recognized again.

Unfortunately, Alzheimer’s is a powerful disease when truly present, and no mind activity will win in the end. In the short term, she bought herself the peace of mind of not being so aware of what was happening to her brain as the disease slowly started to infiltrate. Until she no longer could. She did grant herself some sanity for a little bit longer.

We were a family unit divided on the best care plan for mom. But we didn’t even know to call it a care plan, especially because there was no diagnosis.

We would debate about what to do with Mom. Are these issues because she is drinking too much? Should she not be driving? How do we know this is really Alzheimer’s? The doctor is not confirming this.

The Alzheimer’s Grip is Firm

She was unable to do anything of substance during the day. She had a paperback book she was “reading”. She would open it up in the middle, somewhere, to feign reading the book. One day, we caught her holding the book upside-down and pretending to read it. When we called her out, she just laughed and moved on.

She couldn’t tell anyone what was going on in the book. She could not follow a TV show, but with those social skills, she would act like she could.

Mom had started painting in her 50s, which is what I have done as well. Mom’s paintings, however, are phenomenal. She was in art shows in the Kansas City area and took classes (and graduated from) the Kansas City Art Institute. I’m including some of her paintings in this article so you can form your own opinion and don’t have to take it from me.

Once she took a turn, to this invisible condition that we could not get diagnosed, she could no longer paint either. She would spend hours in her basement-turned art studio with no results.

My mom’s memory was like a mudslide during a storm…

It was very sad to watch the decline and to know what was happening to her. She was slowly losing herself and I was slowly losing my mom. At a certain point, I could no longer have those mom conversations with her —- those conversations that you can’t have with anyone but your mom.

It was a very slow goodbye. I did not realize that it was a time to grieve, but it was essentially like watching the death process over a very long 14 years. And still 5 years in, 8 years in, 10 years in, no diagnosis. Clearly, he wasn’t going to do it.

The early, slow deterioration process was completely invisible. You had to be in the know about what was going on to truly understand it and the grave nature of what was happening.

People watching from the outside cannot see it. Another dangerous situation that starts to breed at this time is the role of the caregiver. Outsiders cannot see where the caregiver has to start catching the plates before they drop.

When the caregiver gets so good at this, it’s even harder for those watching from the sidelines to truly understand the issues the family unit is dealing with.

The Caregiver Doesn’t Even Realize…

that Caregiver is a name for what they are doing.

Dad was a phenomenal plate catcher. It’s like they conspired together to make it harder for others to see what was going on. It was invisible to onlookers, until it wasn’t. Dad felt there was a stigma associated with Alzheimer’s — plus he was completely against bringing anyone in to help out in the house. They would cover it on their own.

Dad had not seen the research yet. I don’t know that any research had even been published yet (approximately 2005ish). Caregivers suffer just as much as Alzheimer’s patients when they don’t tend to their own health during the caregiving process.

At some point, we realized Mom could not stay at home any longer. She became a danger to my Dad and herself. She would leave the stove on, walk around the house and forget about it. She would walk out of the house to the large park two doors down. She was wandering. She was a flight risk.

My dad, while mentally sharp as a tack,

was physically going through a few health issues, which made it hard to keep an eye on Mom. Mom would wander all over the larger house, built for raising a family. The last thing they had time for was coming up with a plan to move out of the house, which would mean going through three generations of stuff left behind by those who had moved on (myself included) and figuring out where they would move to.

I tried to help my dad come up with a plan. In the short term, we found an adult daycare for Mom. She needed something to keep her occupied during the day, to keep her out of trouble and to give my dad a break.

The following year, Dad agreed it was time to move Mom into a memory care unit. She was too much for him to handle at home. She adapted pretty well, making friends — still had the social game going.

Thelma and Louise Make a Run For It

She was known around the unit, with her buddy, as Thelma and Louise, who were looking to break out. It was always a good time to talk about because they would forget about it as quickly as they had their plans.

Apparently breaking out was a popular theme in the unit. My greatest moment of personal pride was when a suave and debonair gentleman in his 70s came up to me and on the side says, How about you and I take the wheels and get outta here? Never mind that he said that to every female he was able to talk to. I only found this out later.

Giving Back in Order to Not Give In

As the Alzheimer’s Disease progressed in my mother, and I learned more about it, I felt an inner desire to take more action. I got involved with volunteering with the Alzheimer’s Association. Today, there are two primary areas I volunteer with them:

1. For the last nine-ish years (pandemic years notwithstanding and throwing off easy counts), I’ve gone to Washington, DC each year to meet with our Illinois legislators and to ask them to sign on with the Alzheimer’s Association’s bills and requests, if pre-bill status. I also “lobby” locally as needed.

   

   And I’ve gotten so good at it that recently, when I randomly ran into a local congressman at Panera on a regular-ole Saturday, I was able to be another reminder to him about the Alzheimer’s Association and the work we need him to do in DC.

2. I also give my time to the Alzheimer’s Association’s largest fundraiser, the Walk to End Alzheimer’s. I’ve served on the planning committee for 4 years now and have been a team captain for over 10 years.

   

These things I do because there was absolutely nothing I could do to stop my mom’s Alzheimer’s Disease. But what I can do is take steps towards the possibility of finding a cure. There is currently no cure for this leading cause of death.

The short version of our story is that Dad died 5.5 years before Mom and I blame Alzheimer’s for his death. His body was so worn down from the day-to-day toll of the disease that when he got an infection, his body could no longer fight it.

The disease gets more visible over time. Mom continued to deteriorate slowly over the next 5.5 years with some of the best care we could find for her last 3-4 years. (Shout out to Care Haven Homes in Kansas City.)

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*The Alzheimer’s Association puts all dementias under the same umbrella as Alzheimer’s. I use the terms dementia and Alzheimer’s interchangeably.

Part 4 in a 4-Part Series. In case you missed the earlier parts, here they are:

• Part 1 - The Search for Answers in My Chronic Pain Journey

• Part 2 - The Pain Was Awful

• Part 3 - “Your Pain is Real. It’s Very Real, However…”

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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When The Body Says No, by Gabor Mate

The Tell: A Memoir, by Amy Griffin

What My Bones Know: A Memoir of Healing from Complex Trauma, by Stephanie Foo

What Happened to You, by Bruce Perry and Oprah Winfrey

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• Part 1 - The Search for Answers in My Chronic Pain Journey

• Part 2 - The Pain Was Awful

I learned the definition of chronic pain - pain that lasts longer than 3 months.

At this time, I did not learn the definition of trauma - an emotional response to a terrible event* (but I was about to). Two people’s responses to the same event may not be the same. One may experience trauma while the other will not.

The doctor talked about the fight-or-flight response that occurs involuntarily when there is a perceived threat, activating the sympathetic nerve system. This process releases hormones, which can result in physical reactions like tense muscles and increased mental alertness.

Fight, Flight or Farce?

Around this time, I wished I had paid more attention in biology, my worst class in school. The body can get stuck in fight-or-flight or fight-flight-or-freeze.

Mayo was the first established facility to tell me that when pain is chronic, there is usually more than just the pain behind it. The pain creates a baseline of pain, but there is something else leveling it up. Not gonna lie. I was a bit skeptical of this at first. But this was Mayo, so… I did not drop it completely.

They asked when I took breaks at work.

My work consisted of working from home, but being on Teams conference calls all day long. Taking a quick bathroom break usually meant being 3 minutes late to the next meeting. There were no breaks.

They explained to me that by operating like this, I was impacting my quality of life. I could make it through the day, ignoring my pain through the distraction of work, but then the pain continues to build up all day long and my after-work hours are shot. That about summed it up.

Mindfulness and Meditation

Mindfulness and meditation were strongly encouraged. I was sure that the day I got home I would start a new meditation practice, using just the suggestion they gave:

• Start slow

• 2 minutes, 5 times a day

I have a small Moleskin notebook where I was tracking various Mayo follow-ups. I used that to track my meditation attempts.

Three times was the most I was able to get to over nine non-consecutive days. I tried. It was hard with the demands of the job. It was like a hamster-wheel effect that it was the job I was trying to detox from, but it was the job that wouldn’t give me the time to do it.

I might have come up with a new plan of how to make the meditation more of a habit if the sky hadn’t come crashing down on me. This next calamity shows up in part 4 of this series.

Before this next fiasco, I strangely had another experience that sent me the same questionable message Mayo gave me.

Again - “Your pain is real. It’s very real, however…”

Four days after returning from Mayo, I took a pre-planned vacation to an amazing health and wellness resort in Arizona called Canyon Ranch. An interesting series of events led me to meet with the Director of Health and Wellness about an unrelated topic. We quickly got to my pain topic and I filled her in on the background and events to date.

Your pain is real. It’s very real, however — she used the exact same words I heard at Mayo. Those words must show up in a textbook somewhere. She continued going on about fight-or-flight, sympathetic nerve system, hormones and trauma.

She went where Mayo did not and talked about the likely potential of trauma being what is leveling up the pain. While no trauma jumped out to me from my past, this got me thinking.

The next day, still at health and wellness haven, I went to an instructor-led Ai Chai Meditation in a warm water pool. Halfway through, one of the prompts took me to a place in my childhood. I saw myself in my childhood home.

I remembered that I remember nothing about my childhood. And at that moment, my pain shot through me like a lightning bolt in a hot summer storm. The pain was awful.

The walls of the skeptic started caving in.

I now believe that my pain is real. It’s very real, however…

However, it is being leveled up by something that would need to be figured out. I was truly at a loss as to what it could be. But I’ve always thought it was strange that I recall nothing from my childhood. I used to chalk that up to well, I’m probably not supposed to remember it then.

Finally, at this point in my life, it was now time to figure this out.

Between Mayo and Canyon Ranch, I was recommended to see a therapist specializing in CBT, EMDR or Pain Reprocessing Therapy. All three would be a bonus and in my mind, the best of all worlds. I had to look up the last two to understand all the options in front of me. I’m adding definitions at the bottom for reference.

Browsing for Brain Balance

It was surprisingly difficult to find a therapist.

There are two ways I know of to find a therapist if you have no leads in your local area:

• Go to your insurance company’s website, enter your search criteria, like zip code and other defining attributes. Search criteria will differ by company. Review the search results to select who you will call.

  • Pro: You will know instantly that the provider is covered by your insurance plan by nature of being on the website.

  • Caution: You should still ask if the provider takes your coverage to ensure nothing has changed with the provider’s status. Also, confirm that there is nothing unique about your plan even though the website says you should be covered.

• Use the Therapist Finder on the Psychology Today website, where there are many filters:

  • geographical area

  • specialty, insurance

  • type of therapy

  • gender

  • age

  • ethnicity

  • sexuality

  • language

  • faith

  • price

  • Pro: There are a ton of therapists to choose from.

  • Con: Therapists listed on this site do not need to be actively seeking clients. You may not hear back from them if you email or leave a voicemail. That was my experience anyway.

I used the Psychology Today website, but had trouble because none of the therapists I reached out to got back to me. It was frustrating and it dragged out a bit since I wasn’t expecting such a delay; I was only reaching out to one at a time.

I finally engaged a therapist friend of mine to help. She used the Psychology Today Therapist Finder as well. However, she navigated that site like Lindsay Vonn taking swift turns on the downhill slopes. Soon, my friend had all sorts of therapist info for me to follow up on.

Out of 7 recommendations, 7 did not return my call or email.

We tried again. Out of 5 recommendations, 5 did not return my call or email.

Third time was the charm. And this time her recommendations included organizations with multiple therapists as part of their group.

Finally, we had some success!

The journey is still underway, but I’ve made progress. In part 4 of this series, I will share where I am today with the therapy part of this solution.

Unfortunately, there was a devastating event that leaped frogged in front of any solution implementation. Stay with me in part 4 to get the full story.

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*American Psychological Association (APA)

Therapy Type Definitions (based on my experience)

Cognitive Behavioral Therapy (CBT)

• Teaches you coping skills and strategies while focusing on the interconnectivity of thoughts, feelings and behaviors

• Aims to reduce various mental health conditions such as “depression, anxiety, post-traumatic stress disorder, also called PTSD, or an eating disorder” according to the Mayo Clinic.

Eye Movement Desensitization and Reprocessing (EMDR)

• Involves moving your eyes a specific way while you process traumatic memories.

• Goal is to help you heal from trauma or other distressing life experiences.

Pain Reprocessing Therapy (PRT)

• Uses various techniques (pain neuroscience education, somatic tracking, CBT and mindfulness & relaxation techniques) to help you retrain how your brain responds to pain signals

• Purpose is to reduce pain intensity, disability, and feelings of anger, and to improve sleep and levels of depression.

• Two extra notes about PRT:

  • Said to be exceptionally useful in treating chronic pain. (I’ll talk about neuroplasticity in a future article.)

  • It’s a relatively new treatment approach to pain management, yet shows a lot of potential to help.

Part 2 in a 4-Part Series

• Part 1 - The Search for Answers in My Chronic Pain Journey

Part 2 of my pain journey starts at the Mayo Hospital. And no, this is not a hospital trying to prove the merits of a specific condiment as the preference. (I used to wonder about that.)

Like all well-established buildings with weird names, Mayo is named after the person who founded and funded the start of the building and the entire medical existence of the Mayo Clinic that is so well known today.

Going to the Mayo Clinic is like taking your diamonds in for deep cleaning. They leave no stone unturned.

Testing… 1… 2… 3… Testing… 1… 2… 3…

They do every test and have you consult with every expert. Even if you’ve had a specific test before, they want to re-do it using their lab techs, their equipment and their doctors to interpret the results. I was going to be cared for and handled like expensive jewelry.

I flew in on a Sunday night and stayed over a week until the following Tuesday.

Mayo always has a dystopian feel to me, as I flashed back to a previous trip there in 2017. There is, of course, a lab where all Mayo patients are sent for bloodwork. After the lab techs draw out the blood samples, the techs wrap the patient’s elbow with a colored bandage to prevent post-prick bleeding.

We would be out to eat dinner in one of the restaurants near the main Mayo Campus and would see everyone walking around with the color du jour wrapped around their elbow from their earlier lab visits. It almost felt like walking zombies. Almost.

Mayo ran me through every test under the sun.

Nothing showed up as far as a tumor or the big thing to point to, as in ah, this is it.

One of the MRIs did show some partially torn muscles, which ended up not meaning much, but it felt good that one of the tests registered something vs being a total waste. I know that sounds kooky. That’s how my crazy mind works.

While it’s nice to get that comfort level that nothing really bad is wrong, it also feels awkward trying to explain how bad the pain can be or how difficult it is to live life when my “problem” is not easily definable, like something you can point to and say “see, this is why I’m having such an issue.” Are you sure those tests don’t point to anything more serious?

I also recalled how walkable the Mayo Campus is. And for every sidewalk, there is an indoor passageway connecting all the medical buildings. That passageway extends to some of the nearby hotels and restaurants, creating that dystopian village with the colored bandages.

This visit, however, I was unable to do any of the walking as the pain was awful. Each day, I took the shuttle from my hotel to the very efficiently run dropoff area at the central Mayo check-in building.

Wheelchair? No, thank you.

It took me a couple days to realize that they offer a free wheelchair service around the campus. Even though I was traveling alone this time, their service offered a free valet to push the wheelchair wherever I was going. I would not, however, need a wheelchair. I’m fine. It took me another day or two to concede to requesting a wheelchair. The pain was awful.

Mayo is a very efficiently run operation, making the productivity nut in me drool, and very curious how they pull it off. The wheelchair valets coordinate with the central dropoff area when wheelchairs are needed for incoming patients and the valets ask if you’re meeting up with a shuttle to ensure it won’t leave without you.

Me riding in a wheelchair, however, was a very disheartening feeling. Had it really come to this? 57 years old and being pushed around in a wheelchair because walking is too much for me. It made me feel very sad. I don’t typically go to a place where I feel sorry for myself because of this awful pain issue, but this did it.

The Mayo Solution

Mayo’s recommended treatment plan was a multi-pronged approach. There was not one distinct issue, there were many. So the solution was the same. Mayo also follows the philosophy that they help to solve the mystery, but they prescribe the solution. They expect you to find your care team at home locally. This was easier said than done.

Pelvic Floor Physical Therapy

They recommended physical therapy (PT). I had a physical therapist, but she wasn’t able to solve this. We had already been there. I realized I needed to find the right PT, properly skilled in nerve issues in addition to being an expert at pelvic floor PT.

Mayo provided a website where I could search local PTs and understand their certifications and credentials to make an educated and informed choice for a pelvic floor PT.

In all my 7 previous years of off-and-on pelvic floor PT, I had 2 PTs that had the caliber needed to treat my issues up to that point: one of them apparently did not treat nerve pain and the other was no longer geographically desirable. (However, if I did not have success soon, I may be willing to drive the 1 hour each way, at least 1x a week, to get the level of care needed. This would become a more significant challenge when my medical leave of absence ended and I had to go back to work.)

I hit the jackpot! I found a PT less than 10 minutes from my house. Her credentials are very similar to the 1-hour-away PT and I was able to get in right away.

Medication

Mayo’s recommendation was a medication change, as the nerve-related one I’d been taking was not resolving the pain. There was a complexity in that the current med I was taking also treats another invisible illness I have, restless leg syndrome (RLS). The new med would also mean making tweaks in my RLS medication protocol. On top of the original appointment schedule, I was sent to see a neurologist at Mayo as well for their recommendation on the RLS med changes.

• Recall/refresher from part 1: I want to avoid getting into the details of which medications and what dosages I’ve tried, as this is not about that. It’s really about how I am my own best advocate to get the answers and treatment I need.

At the time of this writing, I’ve been on the new med for about 3 months. We’ve continued to increase the dosage approximately monthly to try to get to the optimal level.

Other Treatments

I recognize that my specific type of pain (pelvic floor) can be more uncomfortable to read about than if it was back pain, for example. I get it. I pick and choose when to say those extra words to describe my pain when talking to people. And cheers to you if I you’re still reading even though it made you a little (or a lot) uncomfortable.

In that vein, I’m not going to go into specific detail on a couple of other treatment solutions Mayo gave me. It’s not for the casual reader.

If you suffer from pelvic floor pain and would like more detail on these treatments, feel free to message me privately by replying to the email that sent you this article or comment below where I can privately message you.

What I will say is that it took 4 attempts with 4 different brands with one of their recommendations and 2 intensity-level attempts with another to get to a treatment that feels like it is going down the right path.

“Your pain is real. It’s very real, however…”

Find out when and why I heard this phrase multiple times by tuning into the last piece of the Mayo Solution in next week’s article, part 3 of this series.

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