Chronic: The Pain We Don’t See, Chapter 2

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Top illustration by Tim Forkes

Chapter 2: One Gigantic Gamble 

Saturday: February 8, 2020 

The cost of seeking an end to chronic pain can be enormous if you desire a drug free solution. My current insurance will only cover a seven day supply of Vicodin, but my doctor writes me a prescription of a 30 day supply. I end up paying out of pocket for the ease of not having to refill it every week. After my pharmacist finds the best discount he can for me, I usually get my 60 tablets for somewhere between ten and fifteen dollars. 

However, to see the person who performs acupuncture runs me almost $400.00 for a five treatment special. A ten treatment special from my chiropractor runs over $600.00 so I try to spread out my 20 pre-approved visits from my insurance over the course of a year. However, I usually need more so I purchase a ten pack from him and spread it over the remaining uncovered visits over a two year period. 

Even with insurance, there is the annual deductible to meet, copays for office visits, and then the uncovered portions for things like MRI’s, blood tests, anesthesia for epidurals and other costs we tend to forget about. There is also the lost time factored in. In my case, I have been off work since mid November and until I get the upper hand on this stuff, I can’t return as long as I never know when I am going to get hit by pain and/or fatigue that floors me. It’s easy to see why for ten bucks a person opts for a narcotic instead of an alternative course of treatment. 

I suppose, if I wanted to take the risk, I could offset my lost income by selling my Vicodin, but I am lucky I am not desperate for money. Besides, what good will it do if I have sold my pain meds when I have a flare up and need them? 

Yesterday, as a way to pay for some of my alternative treatments, I agreed to serve as a model for my Chiropractor and Acupuncturist who were having a photo shoot to promote the services their office provides. An hour of my time was spent helping demonstrate certain therapeutic services in exchange for a free month of use for them. Just as a drug addict will seek new ways to score a fix for what they need, pain has helped me to seek new ways of trying out methods I might not be able to afford. One of those methods designed to treat inflammation in order to improve healing from injuries runs $100.00 for fifteen minutes. I have resisted it because of the cost. Now I can try it free for a month and see for myself if it helps. 

Afterwards, I received my usual acupuncture treatment. While getting it, my acupuncturist mentioned to me I am different than most of her chronic pain patients. She said most of her clients have just given into their pain and accepted their fate. On the other hand, I have a desire to overcome it and take back as much of my life as I can. This requires, among other things, a willingness to understand how pain works and how her process involves an ebb and flow that as things improve will result in longer stretches of little to no pain. 

I ask questions and am fascinated by her eastern approach to healing. I figure if I am paying as much as I am for her help, I should exercise my brain and learn along the way. I did the same for the five years I spent in Physical Therapy after my accident in 2007. Most of us are in too big of a hurry and just want a quick fix, especially pain patients. We are also too busy being disconnected from the people in front of us because we spend too much time glued to the screen on our smartphones or computers. 

I make a point of not bringing my phone with me to my appointments. I believe when you make a human connection with the person treating you, they go the extra mile for you. They see in you a person who really desires to get better. This is why I am glad I have been involved in athletics for most of my life. I may be 61, but I still think like an athlete and a coach. I seek out ways to improve and gain an edge where the non-athlete is more apt to not know how. 

Pain is a message. It is not a feeling. It is up to the person experiencing it to figure out what that message is saying. Sometimes, maybe most of the time, it speaks a language we do not understand. Rather than throwing up my arms in frustration, I seek out those who understand the language and who can interpret for me what I do not understand. In doing so, I learn how to understand pain’s words and how to react to them when they speak. I might only speak English, but I am constantly learning to understand what my body is saying to me when it talks. 

Wednesday: February 12, 2020 

Today, I had two appointments. The first was with pain management. It was time for me to pee in a cup to make sure I am not using alcohol with my Vicodin and muscle relaxants. I am always amazed by what I see in the waiting room when I go. It’s full of people, all of who are in pain in some form. The Physician Assistant I saw reminded me I am one of their few patients who they see who desires to live an active life. Most are just wanting to not hurt due to things like major surgeries, illnesses, or physical deformities. 

This does not underscore my problems. Anyone like me with 15 herniations in the disks in his neck is bound to have pain. I just happen to love exercise and want to remain as active as possible rather than undergo major neck surgery. I know I will always have problems as a result of my neck and other causes of pain. There is not much that can be done. However, it is up to me to decide whether I want to use this as an excuse to stop being active or as a motivator to keep going. 

I watched my dad give into his pain from a bad back. He never liked exercise and came up with all sorts of reasons not to give it a try. He enjoyed his food, drink, and Percocet too much. When he retired, he became glued to his recliner. I want to keep fit. I want to remain active. I want to feel as though I still matter and contribute to this world. For me, this does not happen if I give up what I enjoy most. 

My next appointment was with my therapist. I was prepared to begin EMDR today and go over the events of my losing a dollar to the West brothers as my first go. However, my therapist asked me about my father and an hour later, I was still going over my relationship, or lack thereof, with him. 

After hearing me talk about him, my therapist mentioned how I was fortunate not to be an addict because of how she explained my father abandoned or rejected me. I mentioned to her that before my brain cleared a few years back when I began using Cymbalta as my antidepressant, I never thought much about my relationship with my father or the harm he caused. However, with the clarity it brought me, I realized I never had much of a relationship with him. 

We are all limited by what we have been taught and modeled. I have learned my father had his share of limitations when it came to parenting and expressing love based on his own upbringing. I feel as though I have forgiven him, but it does not undo the harm of what he did. Perhaps I will go into it further down the road, but for now, suffice it to say, his detachment from me was probably an unconscious act on his part.

While I know I have much to work through as a result of it, I also realize in the end, it was he who missed out the most. I was not his only victim and yet I still see him as a man who was limited in his awareness of what he was doing because he was simply modeling what he learned from his dad. However, because my dad was an only child, and because he saw himself as having turned out just fine, he was clueless as to the effect his way of being a father could negatively impact his children. 

When my father died, I felt nothing. There was no sense of loss or relief. No tears or anger. Just nothing other than he was gone. It was as much his loss as mine that he lived a long life and had at least one of his eight children not feel anything about his death, although I suspect I have some siblings who had a similar reaction. 

The worst thing is by the time I understood all of this, my own children were grown and I am sure I have done my share of harm as a parent, some of which might be the result of my depression and some the result of what was modeled for me. I know I could have been a better father and can only hope I am able to mend any fences that need repairing with my kids before I pass. 

Saturday: February 15, 2020 

For the second morning in a row, I feel off. Yesterday, it was more of a feeling of mental fatigue which left me feeling a bit tired and feeling heavy in my arms. It was enough for me to cancel the upper body strength work portion of my workout and just stick to the treadmill and stationary bike. Sometimes, just doing this is enough to help, but as the day wore on, the feeling remained. 

Last night, I felt uncomfortable the moment I went to bed. Normally, I am asleep within a minute or two, but last night, I began tossing immediately and had a sensation of restlessness deep in my arms. I also felt warm and claustrophobic with covers on, something that is unusual. 

I woke up at 11pm needing to get out of the bed despite not being crowded by any of our dogs. I headed out to my recliner, placed a blanket over me, and managed to fall back to sleep quickly. However, by 2am, I was awake and experiencing a splitting headache, tender and stiff elbows, and fingers that were sore and stiff. 

It’s now 4:30 and I have had two large cups of coffee mixed with protein powder and a few handfuls of cashews and corn chips. Normally, by now, my head will have cleared or I will have been able to fall back to sleep. Neither is happening today so I will have to bank on grabbing a nap later. My aches normally have eased up as well, but instead, they have worsened. I have no idea what kind of gym work I will be able to do in a few hours and I hate to think of what my pain level will increase to after I do the yard work. What I do know is today is looking more like a day where I will need to rely on the medicine cabinet to get comfortable. 

This gets old on multiple levels. Being in pain sucks. I don’t know of any other way to put it. There is no faking my way out of pain; there is just degrees of tolerating or managing it. It makes it hard to make any kind of plans, short or long term, because there is no way of knowing how I will feel. I want to find part time work but am I wasting my time looking knowing I can’t count on how I will feel on a day to day basis? Do I make plans to go somewhere with my wife if I have no assurance I won’t feel like crap and end up ruining our time together? Do I remain home bound and climb the walls? Do I medicate my pain away knowing it might leave me feeling loopy? Do I just suck it up and soldier on knowing no matter what I do with my day, I will feel like shit until I hit the sack? 

Next week is my first week in the last month that is pretty much wide open. I have one appointment on Friday and have made plans to make slow but steady headway with some yard work. In the past, the list I have generated could be knocked out in a day. Now, I have to break it down into short segments and make sure to not do more than an hour or two unless I want to trigger a bad reaction. This pain has become like a needy relative I allowed to move in for a short time only to see it has taken over my life and refuses to leave. 

I am not sure of the solution which is why I have handed myself over to others for help. The link between pain and depression is real. They are like the chicken and the egg in that determining which came first is not so simple. I have a lot riding on working with a therapist and an acupuncturist. Where I get with both is going to determine whether or not I end up better than I am now or if I pursue other alternatives I hope to avoid like epidurals, spinal cord implants, or major neck surgery. 

It’s so easy to see why people like me end up opting for medication. It’s cheaper, less time consuming, and it leaves you numb to the world you live in, a world you perceive simply as painful. That’s not the world I want. I have seen what it does to others. I know how easy it is to succumb to it because it fools you into thinking your pain is gone when in reality, it robs you of your life every bit as much as pain does. I must remain strong of mind and remind myself of the battle in front of me. Some days, there is no battle to be fought. Today, it appears there will be a larger one at hand, but I know if I attack it sensibly, I will come out of it stronger than I am now. 

I have to believe this, otherwise, what is the point of fighting it? 

Tuesday: February 18, 2020: 

Today is a perfect example of how I never know what to expect as a day unfolds. I woke up at 4am and for once did not have much of a headache. My elbows hurt a little, but otherwise, my arms felt good. I made my coffee and sat down at the computer to read the news when I could feel a wave of fatigue starting in my head work its way down through my body. By 6am, after two cups of coffee, I was curled up on the couch sleeping. 

By 7:30, I was out in the garage and beginning my workout. I no longer felt fatigued and since my arms were not hurting, I managed to get in a full core session with ten exercises as well as three sets of four different upper body exercises. Then I hopped on my treadmill and put in a relaxing 40 minutes of running. 

When I was finished, I turned my attention to several tasks on my to do list. I took apart an old end table and tossed it in the trash. Then I weeded and raked the front yard, watered plants, weeded some roses before hula hoeing the back fence line. 

By the time I finished everything, it was 11 o’clock and I was hungry so I loaded up on food. This is when my day changed. Soon, the top and back of my head felt like they were on fire. My arms began shaking, elbows started throbbing, and my hands and forearms were tingling. My pain free day was over and it was now time to turn my attention to pain management. 

My pain was accompanied by more fatigue. I had a general sense of weakness all over my body and the only thing keeping me from going back to bed was knowing it wasn’t even noon yet. Do I run to the medicine cabinet and load up on pills? Do I ride it out a few hours and see if I improve? Do I force myself to do more tasks hoping they are enough to distract me from how I feel even though I know when I finish, there will be greater pain awaiting me? 

Before I quit working three part time jobs last November, today would be a day I would be heading out to teach PE to two middle school classes before heading off to the YMCA to teach another fitness class or two. I would be worn out before leaving the house, have trouble staying awake while I drive to Ventura, and completely spent while driving home and dealing with the evening traffic on the 101. I’d be miserable. 

So now here I am with the rest of the afternoon ahead of me and feeling completely spent. Charlene will not be home until after 8 p.m. I feel guilty knowing she is working such a long day while I struggle to cope with this shit. Is this how it is going to be for the rest of my life? No one can give me a definitive answer so I can not make a plan for my life. When I feel good, I feel like I can do any kind of work. However, I have no way of knowing how I will feel let alone whether or not I will always be this way. It is making it difficult for me to decide what to do moving forward. Is it expecting too much to want an answer? 

Thursday: February 20, 2020 

Perhaps the answer lies in Ketamine. 

I met with my therapist yesterday and she told me she felt based on my self assessment test score for depression and how I have felt each time we have met that she thinks my antidepressant, Cymbalta, is no longer working for me. She said it is odd for anyone on an antidepressant that is working to score as high as I did and she asked me to consider other avenues for treating my depression. One of those is Ketamine. 

Most antidepressants are designed to boost our brain’s inability to produce enough feel good chemicals to ward off depression. Unfortunately, they come with challenges and side effects. One of the challenges is building a tolerance to the drug. Over time, the drug becomes useless because it either has to be taken in such high doses that they increase the negative side effects or you have to ween yourself off the drug and try another. 

Not all antidepressants work the same on all people and they often take six to eight weeks before they kick in or it is determined you are on the wrong one. It becomes exhausting trying one after another which is why so many depressed people give up on antidepressants and either live without them or find less healthier ways to cope with their depression. It’s why we see depressed people turn to self medicating. Alcohol, pot, and other drugs are a sure thing for numbing our pain, but they do nothing for helping users handle life in the real world. They are an escape and not a cure and unfortunately, all too easy to get hold of. 

My therapist mentioned Ketamine as a possibility in place of a new antidepressant. She explained the history behind the drug. It began as an anesthetic in the 70’s, became known as Special K on the club scene as an hallucinogenic, and only recently has been recognized as an alternative to antidepressants. She explained how it is now available and administered in the offices of Psychiatrists as a nasal spray. In many cases, one dose has been known to knock out depression symptoms within 24 hours and keeps the symptoms knocked out for extended periods of time. 

There is an internal numbing effect from antidepressants that leave me often feeling indifferent toward life. Nothing gets me too excited or too down which makes it hard for others around me to know how I feel about things. While my anger may disappear, so does my excitement or joy. To think I may be able to feel again without the paralysis that sets in with depression gives me hope. 

My therapist gave me the number of a Psychiatrist who specializes in treating depression with alternative methods as well as with antidepressants. Perhaps Ketamine or magnetically stimulating my brain will provide me the help I need to better deal with depression and the cycling on and off of antidepressants. At my age, 61, it’s not like I want to spend months experimenting with antidepressants that even if they work will eventually see me develop a tolerance. 

I also received a book she asked me to read, Attached: The New Science of Adult Attachment and How it Can Help You Find and Keep Love. After reading the first chapter, it has become easy for me to see which attachment types some of the people I have had relationships with had at the time as well as my own. 

So far, returning to therapy has been enjoyable because I find it productive. The last therapist I had was not nearly as helpful as my current one and I have only been seeing her for a month. I think the difference is my first therapist seemed more theoretical based while my current one is more practical. With her, I feel like we are talking whereas with my first one, it seemed more like an intellectual endeavor devoid of feeling. 

Having said all this, I am still reminded I am dealing with more than just my depression. There is still the physical component of pain which is separate from my internal, or emotional pain. I have been having a rougher week with pain and fatigue. There is an ebb and flow to it and I have yet to get to a point where I have a handle on it. There is the physical pain that can accompany depression and then there is the physical pain that comes from the injuries sustained from my accident and from all the years of playing sports. 

The chronic pain and fatigue that comes from the head and neck injuries I sustained flare up and still become overwhelming. They have been getting the best of me this week and hit me hard by mid day. This week, it is my arms more than my head. Nothing seems to knock out the soreness, stiffness, and burning they feel. My elbows crack and sound like dried limbs snapping. My joints are tender to touch and my muscles are sore and knotted. 

After I workout in the morning, I try to get as much done in the way of physical tasks as I can before I stop for lunch. By the time I eat my lunch, the pain and fatigue sets in and builds to a crescendo until I take some Vicodin and a muscle relaxant hoping they ease the discomfort. However, they never knock it out fully. It is so tempting to take more than I am supposed to or to consume a few beers in the evening to heighten their effect, but I know doing so will only complicate things. When I am home by myself, I am less likely to use my meds because I know how I feel has no effect on others. If I am still hurting an hour or two before Charlene returns from work, I take my meds hoping they kick in enough to allow me to feel better when she gets home. 

Some people lead very busy lives filled with one obligation after another and they struggle with trying to balance it all. My life is anything but busy, but it is still about balance. It is a high wire act in which I try to find a way to ward off pain, fatigue, and bouts of depression while still finding ways to be useful. It’s about wanting to improve, contribute, and overcome which is what all of us face; it’s just that some of us face it in different forms than others. 

Monday: February 24, 2020 

This past weekend, my wife and I traveled to Pismo Beach to celebrate her birthday and get away from the house and dogs. It was a much needed trip and something we need to do more often. We both find comfort when we are with each other and away from the distractions of work, home life, and general responsibilities. We get to do something we both enjoy doing which is simply talk and spend time with each other. 

Inevitably, the state of our relationship comes up because we both care about each other and about us as a couple. We both admitted we have been missing us, but for different reasons. 

She is gone more than I like because of her current work life. She has been working extra this year because along with resuming her tutoring work, she began working in a medical office this past fall. What began as a temp job has turned into a permanent position she enjoys very much. However, she felt she owed it to her students and their parents to finish this school year with her tutoring. Consequently, she works some very long days. 

My wife has Fridays off, but she is often so worn out from work she spends much of the day resting and recuperating from work. She will get home from work as late as 8 p.m. so three nights a week I eat dinner by myself, something I do not enjoy. Most of our work evenings are spent relaxing with the dogs on the couch and watching something on TV. My evening meds do a great job of knocking me out early so the end result is we do not spend enough time together. 

I also spend my early mornings in the garage working out. Charlene has left for work before I am done and when I am finished, I then attack whatever chores need doing while I still feel capable and before any spinal pain and fatigue sets in. 

One of the things I love so much about my wife is that we can bring up any subject and talk with each other without it turning into an argument. In our previous marriages, both of us were hesitant to bring up sensitive subjects because we often felt we were the ones being made out to be at fault. Why poke the beast if it is at rest? 

With each other, we do our best to not place blame or point fingers. We are able to share our feelings, wants, and concerns and know the other will listen, absorb, and consider what they have heard, no matter how much they may not like it. In my case, Charlene needs me to be more of “the man” in our relationship. My pain wears on her and she feels it keeps her from seeing me as being who I was when we first got together. She needs me to take the lead more often, especially now that she works so much and I have been off work since November. 

While I had no trouble seeing her perspective or agreeing with it, I felt comfortable being able to bring up my concern about her own health issues. We both listened to one another, did not interrupt, and most of all, did not try to come away with the feeling like one of us was the winner and the other totally at fault which we both often were made to feel like in our first marriage. By being able to come from a place of compassion rather than anger or disappointment, we were able to use some of our time making sure our mole hills don’t turn into mountains. 

When I was teaching, I was always the confident one at my work, took on leadership roles, and was considered an asset while never feeling that way on the home front. Now, at 61, I feel as if I am a dinosaur on the job front while far more confident as a partner. It is a nice feeling to know I can be a partner with someone and know I can be open and honest. However, at the same time, because this chronic pain has made me realize I am no longer a young man ready to tackle the world, I feel less useful and important than ever. 

Somewhere there is balance for me. I have to believe this because turmoil, whether on the home front, work front, or internal front, gets old. It eats at me and wears me down. Maybe when others speak up and tell me what I “should do” they know what they are talking about. However, I usually see bullshit when they do because I can spot their hypocrisy. With Charlene, there is no hypocrisy. She has a genuine desire to see us both grow closer with each passing day and she makes it clear she is there for me when I need an assist. I just hope she feels the same as me. She assures me she does and I believe her when she says so. 

Saturday: February 29, 2020 

In the days since my last post, I have been reminded just how dangerous the stigma of mental illness is and just how good people are at hiding it. I received an email from a good pal of mine who I used to teach with, a person I always admired for his ability to let things bounce off of him while I was lashing out at the system. It turns out, he was a master at hiding his anxiety over the job and what it can do to someone. Like me and my struggle with depression, he let it build too much and now he is suffering more than someone should have to. 

There is such a stigma to admitting you need help with your mental health, especially if you are a man. It’s why we swallow our feelings for decades before we go too far and swallow too many pills or the barrel of a gun. It’s easy to look at a person and see they need help with a physical challenge, but how do you spot the guy who is twisted in knots inside while his brain refuses to shut off, his fears or anger builds to a breaking point, and his being convinced if others knew what he was experiencing they’d see him as weak or damaged? 

I have seen far better men than me succumb to the pressure of hiding their issues only to see them lose their marriages, careers, and in some cases, their lives. We’ve just begun to scratch the surface of the teenage mind and pressures they face as part of a way to prevent things like school shootings. However, while adults may know better than to leave the world they are hurting from in a blaze of glory, we have an epidemic of overdoses and suicides, a majority of which are middle aged men who have hit a breaking point after years of struggling from internal pain. 

Today, I hope to get to visit with my friend. We talk several times a day and he keeps telling me how much better he feels now that he has come clean with his lifetime of hiding his pain. The load we feel lifted off ourselves is a massive one. However, it is also a deceptive one because while we feel as if the entire load has been lifted, we sometimes find out a few years later some of it lingers. If we do not deal with what is left behind, that load will subtly increase and before we know it, we will find ourselves slipping backward again. 

I thought I had my load from depression fully lifted only to realize last fall I was beginning to see signs it was weighing me down again. This time, instead of trying to solve or deal with it by myself while hiding it from others, I have decided to confront it with the help of my supportive wife, a therapist, and a team of people who I realize are willing to help me instead of judge me for my struggles. 

Like addicts, the depressed or anxiety ridden never stop being who they are. It is an illness we live with and have to confront every day. Once we seek treatment, we are not cured as much as we are just doing better. A recovering alcoholic may slip up from time to time and the same is true with anyone who battles a mental illness. Addiction is just one of the paths we use to deal with the pain we have not properly dealt with and it is why we need to make having access to quality mental health available to everyone. 

I have learned to be more open with my struggles. I do not go looking for others, but there are times I see people who are hurting and I reach out to them. I try to let them know they are not alone and they have someone they can turn to if they need help. The late comedian Robin Williams used to say he always wanted to bring smiles and laughter to others because he didn’t want people to feel the pain he hid from the public. We do not want to be seen by others the way we often see ourselves; burdens who should feel all the shame we carry because we see ourselves as being flawed. 

We are no more flawed than anyone with any other type of medical issue. Until our culture can see this and show the warmth and empathy toward people who struggle with their mental illness just as we show people who suffer from cancer or any other challenge, we will keep losing good folks of all walks of life. 

Tuesday: March 3, 2020 

I almost feel human today. Lately, I have been dragging as well as dealing with pain. There have been too many days I struggle to remain awake, even when I have a couple of successive nights of good sleep. This week, I decided to cut back again on my Gabapentin. I take 600 mg each evening. However, when I am having pain flare ups with bad headaches, I add a 300 mg dose in the morning. That combination is enough to make me want to sleep and I end up fighting it on days where I am not physically busy. When I am experiencing neck, shoulder, elbow, hand and muscular pain in my arms, it’s hard for me to be busy. It becomes a double edged sword. 

Acupuncture has been helping my headache and I now rarely notice what I could not shake for four months. As a result, I decided to cut back my Gabapentin the other day and today the lower amount finally seemed to result in more alertness. My arm pain has also decreased so for a change, I felt human. I know things can change for the worse without warning so I try to just appreciate what most tend to take for granted, a day without pain. 

I met with a psychiatrist today and we discussed whether he felt I was a good candidate for either TMS or Ketamine therapy. After explaining how each works and the pros and cons, I decided to begin with TMS mainly because it is covered by insurance. I will begin receiving the daily treatment in two weeks. The therapy runs for six weeks so my hope is in another two months, I will be seeing positive results with my depression and pain levels. We will discuss how things are at that time before deciding what to do from there. For me, pain relief will be an added benefit from TMS. However, my real desire is to see an improvement in my overall mood and outlook. 

I am determined to exhaust all reasonable options when it comes to gaining the upper hand on my pain and depression. Along with my own selfish desires for wanting to get better, I also want to be a voice for others who suffer in silence. I want people to know there is hope and that there are options for treating pain, anxiety, and depression that are new and do not require swallowing pills. 

My friend who has been struggling let me know on Saturday he wanted to put off getting together. I was concerned at first, but he assured me it was because his wife was making sure she was going to be home with him all weekend to ease his anxiety. Hopefully, we will get together soon. However, I know he has made the most important step which is to admit he needed help. That alone can go a long way to lighten the burdens we carry. We may retreat into our own shells, but that only exacerbates our problems. When we find others we can trust and share our struggles with, we realize we are not alone unless we choose to be.