Chronic: The Pain We Don’t See, Chapter 14

Top illustration by Tim Forkes

Chapter 14: Father Time’s Arrival
Saturday: September 19, 2020

Today, I managed to put in a three hour bike ride. While hitting the three hour mark was a nice accomplishment, I could not help but feel like an old man.

I have always taken pride in maintaining a high level of fitness. Anything I pursue, I do with a desire to find out just how much I am capable of. Running came naturally for me so when I relied on it to keep my competitive juices flowing, I had no problem getting myself out of bed for a 4:30 speed session on a local track. I trained hard and pushed myself to my limit and I am proud of the PRs I have tattooed on my left shoulder.

In my 40’s I began to lift weights with greater intensity and a desire to see whether a skinny runner like me could eventually bench press 100 pounds over his body weight. When I succeeded, I turned my attention to see how many pushups I could knock out in a single set.

After my bicycle accident in 2007, I turned my attention to road cycling. How far could I ride? How many feet of elevation gain could I complete during a single ride? How fast could I cycle around the 72 mile Lake Tahoe shoreline?

On a bike, I have always stood out while climbing the steepest roads. Once, I got a great deal of pleasure while riding behind three riders during a metric century in the Bay Area. I was not familiar with the route so I fell in behind them as their pace suited mine. I was on my old aluminum road bike that weighed around 21 pounds because I decided to bring it instead of my usual much lighter carbon framed bike while visiting my mom. When I heard there was a ride starting and finishing just a half mile up the street from her condo, I entered it at the last minute.

The ride included the climb up the steep roads of Mt. Diablo. While on the lead up to the climb, I could not help but listen to the conversation of the much younger and wealthier riders I tailed who were Silicon Valley Execs. During their conversation, they began talking about the wheels they chose to use that day. The least expensive set one chose was over two grand, more than double the cost of the entire bike I was riding.

I guess they had enough of this older rider on an aluminum bike with cheap wheels tailing them so when they hit the start of the climb up Mt. Diablo, they took off and there was nothing I could do to respond. They simply had much better bikes than the one I was on so I set in to complete the climb by myself.

About two-thirds the way up the steep climb, the three riders came into my view. A few minutes later I noticed I was reeling them in at a steady clip. About three-fourths the way to the summit, I passed them. I half expected them to accelerate and pass me, but they never did. I threw in a few good accelerations of my own and when I reached the top, there was no sign of them. I dropped them.

Unfortunately, today, about half way through my ride, while climbing a road I have climbed many times before, a younger rider blew past me as if I was parked by the side of the road. My legs were dead when I left the house and they never came to life. There was nothing I could do to challenge him. I was dropped like a sack of potatoes. It was a reminder of just how far off my riding skills have declined.

Father Time was hitching a ride with me and there was nothing I could do. Still, it is not like me to just throw up my hands and give up. As I pulled into town, I looked at my watch and noticed I was going to need to find another 20 minutes to add on if I wanted to reach the three hour mark, which was my riding goal. Instead of riding the flat roads that drivers navigate around town, I turned onto East Loop Drive. It is a steep climb that on a good day takes me just under four and a half minutes. I decided I needed to be punished for my horrific effort that allowed another rider to make me look like I should find a new activity.

I checked the time on my watch as I turned onto the narrow street that would take me up into the foothills. As I passed the 25mph road sign at the top, a quick glance at my watch told me I completed the climb in 4:27. I continued to push myself and when the road turned and dropped back down, nine and a half minutes had passed, 30 seconds less than the usual ten minutes it takes me.

A quick U-turn and now another climb up the reverse side saw me churning my legs like I was being chased by a pack of pit bulls. Once to the top, I continued to push myself before the steep drop down to the main road. Nineteen and a half minutes. I managed to find a way to not just punish myself for my earlier poor effort, but I managed to dig down deep and take less time than I would expect on a day I felt my best.

I have had my share of physical setbacks and challenges that threaten my love for fitness. Today began with a very clear reminder I am not the rider I used to be. However, instead of giving up, I found a way to push myself like I was the young rider who blew by me earlier. Maybe I am no longer the rider I once was, but there is still plenty of pride and fight left in this old dog. I may have felt like an old man earlier in my ride, but by the end, I was back to feeling good about what I accomplished.

Facing inner doubts is something we all must deal with from time to time. Giving up is easy, especially when you do not want to face the inevitable. However, I find when I do something like I did on my bike today, I develop an inner resolve that I can rely on when life, and not exercise, hits me with a challenge.

Sunday: September 27, 2020

Autumn has arrived and as this month draws to a conclusion, I feel like I am right where I was in January with my pain. Nearly four weeks have passed since my epidural procedure and I continue dealing with discomfort in my head, neck, spine, and arms. I am back to not knowing what to expect or when to expect it. Usually, I am able to manage the pain by distracting my mind. I have been pouring through my crossword puzzle books of late during the day. If I had a part time job, I feel I could handle things on the pain front and it would do me good in many ways. However, I also know I am nearing the point where I am going to have to rely on my pain medication.

Besides the pain slowly rearing its head, fatigue has begun to set in as well. I am not sleeping all that great again. I have just enough discomfort at night that makes sound sleep impossible. It is very difficult to get into a position where I feel comfortable enough to fully relax and rest. The ringing in my ears has returned and I am finding it very hard to concentrate and hold a thought for any length of time. My wife is incredibly patient with me, but still, I am embarrassed by all I forget. Given my parents history with dementia, I become concerned about whether I am beginning to go down that road.

I often feel lost, like I’m adrift at sea. I am a planner with no clear plan or map to follow. I am in no need of a compass because I lack any direction. This is hard for a person who does best with routine and structure. As much as I try to create it around the home, it just is not the same as when you feel you are contributing to the outside world.

In a little over an hour, I will get an early start on a bike ride. COVID-19 has ended any sort of group rides like centuries, or metric centuries designed to raise funds for a charity so I have no specific event I am training for. I take off with an idea of what I want to do, but just like my pain, I never know what to expect from my body. Some days, I feel much better than I expected and challenge myself more. Other days, I leave with a specific plan to challenge myself only to know within minutes I am not up for the task. I end up having to change my ride on the fly.

Maybe all of this is meant to change me from my rigid pre-planned way of life to one that just goes with the flow. The problem is, I am not a floater who allows life’s tide to take me where it wants. I like knowing what is next or at least have a plan in place to work towards. Right now, I feel like I am at the mercy of the sea. I know the more I fight it, the more likely I am to drown. However, it goes against my nature to just let things unfold as I lay motionless and float.

If there is a happy medium, I do not know what it is. What I do know is after eight months of writing about this, today is one of those days where I feel I have not made progress. Vince Lombardi once said, “Fatigue makes cowards of us all.” Perhaps I am just tired and worn down which makes me no longer feel I have it in me to win this battle. Maybe with some more rest, I will feel reenergized and ready to take on the next chapter of my life. Maybe it will allow me to see my victories more than my defeats from the past eight months.

In another hour, I will drag myself out to the roads. Maybe I will ride three hours and tackle some more challenging climbs. Maybe I just put in two hours of easy riding and enjoy the cool air in my face. I have no Idea what to expect out of me. I might feel physically strong and mentally worn out. Then again, it might be just the opposite. Like my pain level, it is the not knowing what to expect that is most frustrating.

Yesterday would have been my mom’s 94th birthday, were she still alive. I am sure there were more than her fair share of days where she did not know what to expect from life. Raising eight kids is bound to be filled with constant interruptions to life’s plans. Having cancer at 42 will result in more uncertainty and fear than anyone deserves. Watching your husband drift away as Alzheimer’s takes him from you will make your heart ache in ways few can imagine.

Through it all, my mom kept a positive outlook on life. She remained a rock to all of her kids and an inspiration to me. While I am filled with my share of doubts and uncertainty, I do know I am not alone. We all face them in some form or other. Rather than wallow in self-pity, I will do what I learned from my mom and move forward with my day. I will hope for the best because if you do not, you cannot expect a good outcome. Life might not go as we plan all the time, but really, it is not the plan that matters nearly as much as the outcome. With a positive and healthy attitude, anything is possible.

Monday: September 28, 2020

In the last 24 hours, I have gone from being able to manage my pain to having pain that is off the chart. It began in the middle of the night. Unable to get comfortable in bed, I headed out to the recliner. There was no position I could get into that provided enough relief to allow me to sleep. If my head and neck were comfortable, my arms were miserable. If my arms felt good, my head and neck throbbed. By 3:30, I gave up and began my day.

I was not up long before I noticed the tension in my neck and shoulders surpassed the loud ringing in my ears. My head and spine throbbed. I felt like my arms were being ripped from their shoulder joints. Every finger was stiff and ached while my elbows were tender to the touch.

Normally, I loosen up and feel better once I am up for a while, but by 4:30, I was exhausted so I tried sleeping some more, first in the recliner, and then back in the bed. After two hours, I gave up and decided to head out to my gym and see if I could loosen up and feel better. Normally, if I begin slowly, days like this will still allow me to enjoy a decent workout. However, the pain just got worse. Other than some light stretching and weightless movements, there was nothing I could do to feel better.

Once inside the house, my dog Peanut was telling me he was rarin’ to go for his walk. Despite my discomfort and fatigue, I obliged him. I was miserable the entire walk and as soon as I got into the house I headed for my meds. Two Vicodin and a muscle relaxant would have to save me from my misery. Two hours later, I am still miserable.

Tomorrow, I have an appointment with a massage therapist and I have no idea where to have her begin or what to focus on. An hour will not be enough time to address my issues, especially since I initially made the appointment to deal with my tired cycling legs.

I have to give myself a couple of days to monitor this pain before deciding to rely on my nasal Toraldal spray. This is either a one day flare up that will pass or it is something more that will require me to try and knock out all the inflammation in my body. Whatever it is this time, I just know I am going to have to be patient and see what this thing does.

Trying to remain patient while feeling the level of pain I feel is not easy. It is not in my nature to wait for something to pass. I feel powerless and at the mercy of some invisible invader. How do I fight what I cannot see? I will have to dig down deep and focus on the things that relax me. I have to remind myself this pain is temporary.

Friday: October 2, 2020

Earlier today, I had an appointment at the pain management clinic. I never know what to expect when I go there. My last visit was one month after my July epidural and I was told they were not pleased. I received only three weeks relief before the pain began to return. Today marked one month since my September epidural and I basically gave the same person the same information. Three weeks of relief and then the pain begins to work its way back into my life. Some days are worse than others. This time, I was told this was good news to hear.

I think the physician assistant I see is mostly concerned about how often I need the narcotic and muscle relaxants he prescribes. He wants to be sure I am not abusing them. So long as I am not, he feels good about writing refills. Most of all, he knows I do not go there in search of more drugs. As for other treatments, he explains them in detail and why they may or may not be right for me.

Monday, I was absolutely miserable and medication was of little help. Since then, I got a wonderful massage on Tuesday and there has also been a significant change in our weather. There is no doubt some of my pain is influenced by the cool, overcast coastal weather we get. Our June gloom has stuck around for most of the summer and last weekend up through Monday, it was particularly thick. On the days it is this way, I tend to ache all over. My joints feel it with every movement. When the weather heats up as it has the last few days, the air pressure changes as well and the aching leaves.

Despite the warm weather, I still get numbness and pain running down through my arms and hands, but the overall body aching is nowhere to be found. Am I feeling better today just because of the weather or did the massage play a part too? Did the relief it provided to my knotted up neck and shoulders make more of a difference than the change in weather? There just is not any way of knowing for sure.

Tomorrow, I hope to tackle a more challenging ride. It will be my second ride on a new bike I am using. Thursday, the first time I rode it, I noticed my neck, shoulders, and arms felt much better than they normally feel after riding the other bike I have. Was it the bike, the weather, or the massage that made the difference? Only time will tell.

This is a constant learning process, one where I do not always get immediate answers to my questions or long term relief from my pain. What I do know is I will continue to work out and push myself. It only takes a quick visit to the pain clinic to remind me of the importance of remaining physically fit. The patients I see in the waiting room have more than just their physical pain to overcome. Many are like my father; people who never took care of their bodies and are left to live a life filled with strict limitations and a much greater dependence on others to get through their days than I ever want to experience. That day may come eventually, but I plan to do all I can to ward it off for as long as possible.

Thursday: October 8, 2020

Yesterday, it was back to the surgeon who performed both my trigger finger release surgeries. I have had six weeks of PT with little improvement. The finger continues to be unable to fully extend and it gets locked in a painful bent position at night. In the two months since the surgery, it is still inflamed and it is easy to feel a lump of scar tissue that doesn’t break up. I have grown used to it and am no longer willing to try any more surgery at this time.

My doctor injected it with cortisone to hopefully bring down the inflammation. Getting the shot is not a pleasant experience. I had a series of them from my primary doctor, about every six months, when the finger first began acting up four years ago. They always knocked out the problem, but because cortisone can weaken the bone, I was advised to find a surgeon. I wish I had decided to just live with the injections.

Yesterday’s injection has not yielded anything new. The previous ones brought me immediate relief once the numbing agent wore off. This time, nothing. I know that with two surgeries at the sight it is liable to take more time for the shot to work. Still, it is disappointing. The surgeon wants me to give PT a try for another four weeks with the hope the shot will work and allow the finger to regain more normal use. I will check in with him at that point.

He mentioned if the finger is not doing any better, he will want to refer me to a hand specialist to see if there might be something else going on that needs addressing. I am not a doctor, but I do know enough to know another specialist will want to perform a third surgery, probably more extensive, and follow it up with more therapy. Unless an MRI or other diagnostic tool finds something like a tumor or worse, I am not interested in another hand surgery.

As I said before, I am used to it and have adapted my life to dealing with it. I know the least painful way to get it to straighten back out is to massage the scar tissue. I have exercises I can do to help with its strength and I can always ice massage it if it hurts.

What I do not want is another interruption to my life caused by a more extensive operation. I do not want to go weeks without being able to use my dominant hand. I am not willing to sacrifice going on my bike rides or doing strength work in my gym all for a digit that seems cursed at this point.

At 62 years of age, I prefer to enjoy the things I like doing most for as long as I can and with as few interruptions as possible. It will take a lot of convincing to get me to believe another surgery will add to my quality of life, especially knowing how I have a propensity for growing scar tissue.

As for the rest of me, I am feeling pretty good of late. I am enjoying good results from last month’s epidural and as long as the marine layer is light, my overall aches remain minimal. Physically, I feel more like I expected to at this age. Mentally, my depression seems behind me and my psychiatrist who handled my TMS dropped my antidepressant dose again. It’s now at half the level it was and one-third of what he first thought it should be when I began seeing him. If all goes well, when we meet in two months, I hope he drops it more or takes me off it altogether.

I have applied for a few jobs in the last week, another sign of me feeling ready to live more of the life I planned on when I retired. We will see what comes from my search. I told myself the other day I want to give work one more go and see if I can keep my pain in check. If it does not go as I hope, I will give up on the idea of part time work outside the house and consider things I can do from home.

This is all a process and I have learned not only how nice life is when I am not in constant pain, but what things matter most to me on a day to day level. I know myself better than when I began this process in January and I want to see this to completion.

Through it all, my wife, Charlene, has been nothing short of amazing. I do not mention her enough, but I know I would not be where I am now without her support. She has provided me with more than just her love. She supports my quest, offers excellent insight, encourages me to trust my instincts, and never pressures me to follow a certain treatment or not follow one I think can help.

This morning, I will head out to my gym and workout. I have not followed any set plan for my gym work in a while. Like with my rides, I gauge how I feel and do what my body allows me to do. Some days it means more core work than others. Sometimes it results in more pushups than upper back work. Other days it is the opposite. I try to just go with the flow and enjoy knowing I have made progress. I know what exercises not to do and rather than trying to will myself through an extra set or lift, I back off. I tell myself it is better to live for another day and enjoy today without pain than to make a choice that might result in a setback.

Most of all, I try and remind myself there is an ebb and flow to everything. Whether it is my body, the weather, society, or the universe, nothing remains constant. It seems I have spent much of my life trying to will myself past the messages I am sent and end up ignoring. I see now, more than ever, the importance to recognize the signs I see rather than say, “Want to bet? I’ll show you what I can do.”

Some people learn this much earlier in life and I admire those who do. I am an end result of my stubbornness as much as anything and by learning to let that part of me go, I am seeing it is easier to navigate the aches and pains of life whether they be physical, mental, emotional, spiritual, or professional. Maybe, someday, someone younger will read this and get to where I am much sooner than I have and reap the benefits for far longer than I will get to.