Saturday, September 28, 2024

What Is Still Within My Control?

My upper thighs braced my body against the bed as I peed. I was groggy from the medication taken just a few hours before. Stumbling would worsen everything; I don’t want to deal with that again. A little plastic purple cup on my nightstand refused to come into focus. I asked myself, “Do I really want to live this way?” As The Shiver spiked through my body, the answer, “not really,” ran through my brain without escaping as sound. No one else was anywhere in my house, so the answer was unnecessary. Responding would only make the situation weird. Weirder? More weird? Everything was weird enough.

Somewhere between one and three in the morning is expected for this routine. The urge to pee is the catalyst, but it’s not what you think. As a 50-something-year-old man (I’m not yet in my mid-50s, so I won’t use the term), the feared “prostate” rigmarole is not the point of my story. The bladder is an organ of interwoven muscles. Spasticity, tightness, weakness, and failure of muscles are common symptoms of multiple sclerosis. This combination introduces a myriad of bladder issues: frequency, urgency, incontinence, nocturia (waking up at night to urinate), hesitancy, double avoiding, AND (my favorite) multiple bladder diverticula. The condition describes the pouches, or sacs, that form in the bladder wall, similar to a hernia. One of these defective fibers can aggravate a person. Two or more can require medication, surgical treatment, or catheterization. I have six (at least).

I’m drifting off-topic. My question was about the medication at the bottom of that purple cup. One baclofen and two diphenhydramine tablets make up my cocktail to take as needed to get back to sleep. As becomes When just about every night. If not, my day would always begin sometime between one and three in the morning. My cocktail at bedtime does not last. You would think that trazodone, baclofen, and two diphenhydramine would be enough to simmer searing nerve endings and give me a chance for quality sleep.

Several times in my life, I have faced the question, “Do I really want to live this way?” while staring at the pile of pills amassed to get me through the day. Without fail, the answer is “No.” This time was different. When the little plastic cup came into focus through my sleepy eyes, I attempted to rationalize my need for medication.

“I need these pills if I want a full night of sleep.”

“I didn’t get back to sleep the night before, even with that stuff. Is it enough? Do I need more?”

“I need to get to sleep.”

I need those drugs”—probably the four scariest words to ever run through my brain.

Drugs stir a very rational fear in me. Far too many personal experiences reinforce the horrors of drug addiction and abuse. Ongoing efforts to avoid becoming a statistic will never be victorious. At no point in my life will I feel secure to rise and say, “I have conquered every demon that threatens me with drug dependency and abuse!”

It will never stop… nor can I.

“I need” ran through my brain in 2017 as I stared down my AM/PM pill cases alongside my little baggie for midday dosing. That was my first encounter with The Shiver. I conducted my inventory:

2x100 mg amantadine tablets (to treat fatigue)

2x10 mg Ambien tablets (to help sleep)

6x10 mg baclofen tablets (to reduce spasticity throughout the day)

10 mg dalfampridine tablet (Ampyra, to aid walking)

8x25 mg diphenhydramine tablets (to reduce spasticity throughout the day)

The VA Healthcare System is an outstanding organization that has provided quality care for me since I retired in 2000. Much like other providers, there can be a tendency to treat conditions with medication. Year after year, as I moved from location to location, my medications continued to creep higher. Much to my chagrin, the VA was the first to work on correcting this problem. Ambien, a common sedative, became the first adjustment when my doctor rewrote my prescription for the less addictive trazodone. Arguing was pointless, for they had directives to restrict harmful medications. So, they cut me off—cold turkey.

Six days into my withdrawal, my body no longer craved my Ambien fix in the middle of the night. The entire time, I felt betrayed by my doctors for forcing this on me. “I’m not a drug addict fighting some addiction. I just need my Ambien.” As it turns out, I was dependent (addicted), until I no longer needed my Ambien.

Valued lessons only earn their title when you can apply them in a personal context.

In 2018, I had my second run-in with The Shiver. No one presented the moment; it just happened. I stood in my bedroom and stared into the face of 2x100 mg amantadine, a 100 mg trazodone tablet, 6x10 mg baclofen tablets, 2x10 mg dalfampridine tablets, and 8x25 mg diphenhydramine tablets.

My otherwise shitty holds on to this as one of my “Do I really want to live this way?” moments. One at a time, I played with my medication. If I could stand five days without the drug and nothing changed (positive or negative), I stopped taking it.

My amantadine tablets were the first to go. Nothing changed.

When I stopped taking my dalfampridine, nothing changed.

I stopped all six baclofen tablets, dropping my body into a solid week of withdrawals. On multiple occasions, I argued, “I’ll just take a few to get past this feeling.” Classic dependency. After a week, the itching stopped, but spasticity remained at night. I needed one, sometimes two, tablets for legitimate reasons, but cut my diphenhydramine down to two, sometimes four.

Taking charge of my medication needs pulled me a few steps back from that invisible cliff of dependency. I have never claimed victory over the threat of addiction, nor will I make that arrogant statement in the future. After chastising me for making adjustments to my medications without consultation, my doctor praised the results.

Six years have passed since I faced those demons. The time could have been seconds when I stared into The Shiver last week. For five days, spasticity has not been present in the middle of the night, just the dependency on those pills. I was up before each dawn, scratching that urge buried just beneath my skin. Dependency leads to addiction; withdrawal reflects dependency. I don’t need the pills, but I wanted them.

That’s not reason enough to give in.

Note 1: Oh, about the peeing thing. As a consequence of my multiple bladder diverticula, my doctors presented me with three options: medication, surgery, or a permanent catheter. Convinced that I was not quite there yet, I declined all. Throughout the day, I manage my need to urinate before it becomes uncontrollable. On a regular day, I pee 12-15 times. While annoying, it is manageable. I don’t awaken at night until the urge is irresistibly strong, as in “you’re not going be able to get up and walk to the bathroom” strong. My handy urine collection bottle rests on my nightstand, next to my little plastic cup with one baclofen and two diphenhydramine sat (unused for five days). When I get up two, three, or four times a night to pee, I unscrew the cap and brace my body against the bed. It’s a minor consolation to make so that I don’t need more drugs, surgery, or a permanent catheter.

Note 2: Stories of my treacherous dance with drug dependency and addiction should stand alone like a well-crafted sermon preaching rejection of the temptation of sin. While you might think that my pee bottle sidebar waters down (pun intended) the rest of my blog, there is a connection. At 5:39 AM, my body realized more sleep was not in the cards. After a mere six hours in bed, I crawled out from under the covers for my all-too-often ritual. In a literal “Aha!” moment, I realized my six hours of sleep were unbroken. There were no pins and needles in my body pulling me from my sleep so I could pee, so I could take more medicine, so I could go back to sleep.

That was the sixth night. A sample size of one means nothing, but it sure does send my imagination into overdrive. Correlation does not imply causation, but it sure does put a spotlight on tonight… And the next… And the next… Can I reduce my dependency on medications that, though beneficial in the past, hamper my body’s ability to repair itself?

Note 3: One remarkable byproduct of the damaging effects of my multiple sclerosis is that I can no longer type my stories, blogs, and thoughts. I use voice-to-text software to capture my words. I often think aloud before ever intending to write. The question, “Can I reduce my dependency on medications that, though beneficial in the past, hamper my body’s ability to repair itself?” was an accidental transcription, never meant to be a thought I would share.

My body’s ability to repair itself.

How am I ever going to get that obsession out of my mind?

To be continued.

Tonight is the seventh night.

Note 4: The day began at 6:45. My Fitbit logged 7:17 hours of sleep, 1 hour total time awake, got out of bed one time to pee. In my world of multiple sclerosis, that is an excellent night of sleep!

To be continued, I’m sure.

 

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why, come hell or high water, I will ride again!

 

Never Stop… Never Quit…®

Please donate today: https://mssociety.donordrive.com/participant/Rogue

 

Tuesday, September 10, 2024

Disposing of My Hope for a Future

Did you know that selling items through eBay for Charity has dual benefits? Proceeds from the sale go to your designated charity (benefit #1) while you get the tax deduction for your donation (benefit #2). Everybody wins!

NEVER STOP NEVER QUIT is a registered charity under this program. Have items you want to get rid of? Want to support our fight against the devastating effects of multiple sclerosis? Look no further than this fantastic program: https://charity.ebay.com/charity/i/NEVER-STOP-NEVER-QUIT/121016.

My promotional spot is over. Back to the story.

I always want to support our fight. It’s kind of my thing.

Progressing my MS has created some items in my life that I no longer need.

Fifteen years ago, I lost the ability to ride a bicycle without serious injury. My solution was to trade for a recumbent bike.

In 2012, I lost the ability to ride a recumbent trike without serious injury. My solution was to trade for a recumbent tricycle.

This year marks the loss of my ability to ride a fucking tricycle. Without another downgrade option, my solution was to sell my Catrike Expedition. Back over to eBay for Charity. I did my research and set a fair starting price. Thanks to my master’s degree in English and Creative Writing, I crafted a titillating narrative for my posting. It was a masterpiece that would soften even the most miserly curmudgeon and make them want to bid hundreds, nay thousands, of dollars over my starting price. I took a few pictures of my trike and the accessories collection to go with it.


My hands shook with fear as I scrolled through my smart phone, looking for the perfect shot. Grainy, poorly staged images failed to capture the saving grace that yellow racer provided when it swooped into my life twelve years ago. I circled the garage, photographing from every angle, hoping to capture something better. The constant urge to cry pounded in my head.

You can even ride a tricycle.

MS has taken so much from me and shows no sign of easing its assault. Offering my trike as a sacrifice would not satisfy its appetite. It won’t ask for more, it will just take.

My anger grew, directed at the entire swath of issues MS layers over my life. Everything that it took, is taking, and will take, pounded in my brain. I took his seat in the basket of my trike before I passed out. My options were obvious.

1 - Stop.

2 - Quit.

3 - Whatever option my body can piece together that is the stark contrast of stopping and quitting.

Maybe I put my trike back on the indoor trainer. After the second-degree burns on my toes heal and I can put my bike shoes on, I will ride in the garage again, as I did during the pandemic. When my legs are stronger, I can upgrade to a closed track. When my arm is stronger, I can move on to a safe stretch of road. When next year rolls around, I can take part in bike MS 2025.

Not if, when. The ifs come later if this turns into a striking victory for my efforts to Never Stop… Never Quit…, my message becomes more powerful. If this is another of my tragic, painful catastrophes on the Oregon asphalt, the need to protect the next generation becomes more poignant.

I scrapped my draft eBay for Charity posting, put my trike and gear back into their proper holding area, and then came in to write my story.

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why, come hell or high water, I will ride again!

 

Never Stop… Never Quit…®

Please donate today: https://mssociety.donordrive.com/participant/Rogue

 

Sunday, September 8, 2024

We Will Never Find a Cure

(Click on the picture if you are not squeamish)

Four piggies reinforced my dilemma.

“How did you burn just the ends of your toes? Did you dip your foot in the boiling water?”

I chuckled at the obvious sarcasm, my first lighthearted moment since the accident. Moments passed, two seconds, five seconds, and then I realized the ER doctor was not cracking a joke. Either assessing my potential for self-harm, an attempt to get the truth on domestic abuse, or pure morbid curiosity, she paused her examination and waited for my answer. I stumbled through my explanation of the physics (the pot spilled in front; my foot was extended and just caught the splash edge but missed the heavy pot and most of the water). Another pause, long enough to make me uncomfortable, before her tiny shoulder shrug dismissed the conversation and sent her back to the task at hand. She believed me, or at least heard enough of my rambling to realize a better answer wasn’t coming.

Second-degree burns on four toes of my right foot are the latest complication of my multiple sclerosis. Muscle spasms, weakness, and trouble with coordination were the symptoms that sent boiling water and penne pasta across my kitchen floor and over the tips of my piggies. The only way to prevent this from happening again is for me to stop boiling water. Stop cooking pasta. Stop making lunches for my daughter.

Stop doing things.

Stop living.

I will never stop, so all those options are out the window.

There are many ways to treat muscle spasms, weakness, and trouble with coordination. Rehabilitative therapy and medications can lessen the symptoms. I have realized success through both treatment options, improving my symptoms in the past. As my multiple sclerosis progresses, a countless array of symptoms worsens. Rehabilitative therapy and medications continue to work, but not enough. In terms of function, it’s a losing battle in the long run. Only by treating the root cause–multiple sclerosis–can we stem the tide.

Stopping multiple sclerosis will stave off the advancing debilitation for those of us fighting this disease. Reversing multiple sclerosis will give us a chance to live in a world we considered lost forever. Preventing multiple sclerosis will benefit generations to come, saving them from this nightmare. We can’t perform any of those three miracles because we cannot find the cure for multiple sclerosis because a cure for multiple sclerosis does not exist.

We must create a cure if we want to prevent or reverse the devastating effects of multiple sclerosis.

This June, a team of scientists published an updated Pathways to a Cure Roadmap. Their conclusion was simple and direct: “Scientific breakthroughs leading to MS cures will require strategic investments in research priorities and enhanced global collaboration among all stakeholders in the MS movement” (Bebo et al 5). We are close, but we’re not there yet. How close? No one knows because what they are trying to develop does not yet exist.

Yet.

I know Bruce Bebo. He is a crazy-smart doctor, the kind of smart we need to develop a Pathways to Cures. He is also a person who takes this disease personally and burns with the need to help those of us suffering. I feel as if it’s his personal charge to look out for each and every one of my 10 piggies. Until they are safe from the next MS-related scalding incident, he will not rest. He crafted the updated roadmap along with nine colleagues, using feedback and data from almost 200 scientists from industry and academia, healthcare providers, lawmakers, policymakers, funders, and the bounty of MS patients. This global MS movement involved 15 countries and will never quit until the cure is found (1).

What does this mean for me? Hang in there and keep fighting. Regardless of my pessimism right now, I need to give myself a fighting chance if I hope to celebrate when we reach that threshold and cross it.

What does this mean for us? Donate. We need to support Bruce and the armada of people and resources dedicated to finding the cure. In so many different ways, for so many different reasons, support comes down to money. Every donation helps. Every dollar matters.

Please support our fight to end the devastating effects of multiple sclerosis, now and forever: https://MSSociety.donordrive.com/participant/Rogue.

My piggies thank you!

Please follow my journey:

https://NeverStopNeverQuit.com

https://www.facebook.com/NeverStopNeverQuit

https://twitter.com/NStopNQuit

 

https://linktr.ee/KevJByrne


Works Cited

Bebo BF, Banwell BL, Whitacre CC, et al. The refined Pathways to Cures Research Roadmap for multiple sclerosis cures. Multiple Sclerosis Journal. 2024;0(0). doi:10.1177/13524585241266483