Humble Quest: My Experience With Chronic Pain And My Search For Answers
- Themi Alexandra
- 22 hours ago
- 12 min read
A doctor recently told me that he admired my grit as he walked out the door and left me to change. On the one hand an incredible compliment for a word nerd like me. Grit, what a great word! Four letters that pack a punch: courage, resolve, strength of character. Damn right Dr. John, I have grit in my veins. Cast me in a Clint Eastwood or Coen Brothers movie already: strong, not so silent, but I can withstand a hell of a lot.
And yet the elation at the recognition of my strength was short-lived. When the feel-good faded I stopped to think about the proverbial other hand. I’m sick and tired of being strong. F grit. I am ready for some softness and ease. Cast me in a Merchant Ivory movie already, all soft lighting and picnics in the hills of Tuscany, please.
Those four words made me realize how tired I was of carrying around pain. I’ve lived with pain most of my adult life, but my forties have been the hardest years yet with pain being a program that is running in the background 24/7 and slowly draining my battery.
Some say 40 is the new 30 but my experience has been more like 40 is the new 80. There are too many days when I feel too young to feel this old. I am middle aged. I understand my chronology and that with aging comes changes to the body. I just didn’t expect this much to come so quickly. The last three years have brought me to my knees literally and figuratively.
Everything changed in early September 2021 on the eve of my 41st birthday and they haven’t been the same since. I was working from home when I went to get up from my desk and I couldn’t put any weight on my right leg. One minute I was going about my day and the next it was as if my part of my body had shut down. No matter how I tried, I couldn’t put weight on my right leg and my right glute was tight and tense in a way I had never felt. Panic flared, my mind started racing, and then moved into problem solving mode…how to move. You know you’re not in a good place when you’re considering crawling as a viable mode of transport.
I don’t know about you, but nothing makes my mind spiral quicker than intense pain. In those first few minutes of panic and pain my mind went tumbling down to the depths of the worst case scenarios. My greatest fear is that I will lose the ability to walk one day and with it my prized independence. As I couldn’t walk and was contemplating crawling, I thought this is it, this is how it starts. And then my mind went to my condo. I had just purchased it and moved in a few weeks prior. I broke into a sweat as I considered its lack of accessibility for a wheelchair. I thought ok, universe, jokes on me! I just bought a home I won’t be able to live in much longer, very funny.
My thoughts were off and running, so I pumped the proverbial brakes and got back to the present. You are in pain. You need help. Pick up the phone. I called my sister Evie and in tears asked her to drive me to urgent care. I mention tears, not to be dramatic, but to convey the level of pain. I feel like my baseline is higher because I am in pain most days and so my overall threshold is fairly high. Before I knew it, Evie was at my door and helping me walk to the car.
When the doctor suggested OTC painkillers as a solution, I wanted to simultaneously laugh in their face and spew obscenities. Instead, I took a beat and told them that I need something stronger since I cannot walk without the help of my sister. As I pushed for painkillers I walked a tightrope knowing that others push for other reasons and as a result make it harder to get them. It was the first time I had to advocate for myself in a way that put me outside my comfort zone.
The painkillers helped me get through the next few weeks as did my first cane. My first cane has a different ring to it than say my first potty or my first training bra, milestones you want to reach. The cane was a first I wasn’t expecting for decades down the road. Then again, some firsts come earlier than you want, just like my breasts in the 5th grade.
The intensity of the initial flare up had subsided and there was now a constant dull pain in my right glute every time I walked. Worse yet, this pain was impacting my already compromised gait. I self diagnosed it as sciatica and decided it was time to pick up physical therapy (PT) again. Initially I did PT after my tendon lengthening surgery at six (see A Sort of Homecoming) and then again at 28 when I started experiencing chronic low back pain. So I started weekly PT and then decided to seek out a personal trainer. I’ve always been active but I figured it was time for a professional to teach me some tricks and help keep me mobile.
Motion is lotion for me. My body not only feels better but operates better when I am active. Luckily, I enjoy exercising and it’s been a part of my life for so long it’s routine. I relish a good sweat. And I don’t mind a reason to wear spandex (one of my favorite fabrics) and listen to great playlists. Exercise is the time for my mind to roam, process thoughts, and find clarity. It's my mental white space, I crave the white quiet and the resulting endorphin high, as Kelly Clarkson would call it “my favorite kind of high.”
Afer a solid year of PT and training the pain in my glute was still there and now I had a new ache. It had become difficult to bend over and put shoes on. Talk about feeling old beyond my years and then being reminded of it multiple times a day. So I ordered some Skechers slip-ins (game changers) and saw a rheumatologist to rule out psoriatic arthritis. As relieved as I was to receive a negative ANA panel clearing me of anything autoimmune, I was still left wondering what this was. The rheumatologist continued to see me for several months out of his own curiosity and along the way I tried several different drugs to no effect.
So it was time to take a more natural approach, starting with my diet. The target was inflammation and I was willing to do anything to reduce it. Name a diet, I’ve tried it and I even went plant based for over a year. That left me hungry and still in pain so I took a turn from western medicine to eastern medicine and gave acupuncture a try. As with anything I tried, I gave it a fair shake but I wasn’t getting enough long term relief to justify the cost on top of my other maintenance fees.
Some call the extra costs that come with being disabled a disability tax. I like to refer to them as maintenance costs. It costs a lot to maintain my body. I do deep tissue massage twice a month. I treat it like a form of PT. I am not looking for some soft touches to world music. No sir, I want my masseuse to get into my muscles (I’m talking elbow down deep) and release some of the constant spasticity in my legs that impacts my entire lower half. I also see a chiropractor monthly for adjustments as well as naturopathy. Dr. John is invested in my whole health and is one of the MVPs of my care team.
There are multiple people who contribute to my health and mobility. During any given month I have a minimum of 10 appointments between massage, chiro, PT, and training. I am grateful for each of my team members, their expertise, and their support of me and my mobility. But taking care of my body takes more than money. It takes any time I have outside work and my personal life.
Investing time in my body is nothing new. I devote a minimum of 30 minutes to stretching every day. I started stretching every night at six as part of my post-op PT. Then at 28 I added a morning round to the daily mix. The reality is I am stretching against my cerebral palsy (cp) or more specifically my spasticity. My leg spasticity will never change and my low back pain is here to stay since it’s a result of the way my feet hit the ground. So stretching may not be a permanent solve, but it is a partial salve. And trust me, there are mornings or nights when the last thing I want to do is make the time, but I know better. The only person I hurt by not tending to my body is me.
Three years into my journey with pain and I was tired. I was on a hamster well of wellness: trying hard to get somewhere but making no real progress. Around this time of fall 2024 I got hit with urgent care level pain again. I didn’t feel like begging for painkillers, so I made due with the opioid analgesic I had left over from 2021 to get through the week.
Then I decided it was time to try a pain management specialist. For the first time I reached out to my dad, a retired physician for help with a referral. We went to see him together. The more appointments I went to, the more I realized how valuable it is to have an advocate in the room with you. You are receiving a lot of information and not always in the best head space to receive and retain it (even if you are taking notes, which I do).
It was on the drive home that my dad mentioned a recent piece in the New England Journal of Medicine about how difficult it is for adults with CP to find specialist care because most CP specialists are focused on pediatrics since it is typically an at birth condition. I told him this makes no sense because we grow up not out of CP. So I had a new mission (find an adult specialist) and a new prescription.
For the first few days, medrol felt like a miracle drug. Before I could cue up the Hallelujah chorus, things took a scary turn before I finished the six day dose pack. I was on the stairs at work and thank goodness I take stairs with a railing or this would be a different story. I was going down the stairs with a co-worker when all of a sudden my right knee gave out and couldn’t hold my weight. For the next two seconds I both blacked out and lost the ability to speak. My co-worker kept descending and I stood there contemplating how I was going to make it down. I lost the ability to say, “Stop,” or “Hey I need help.” Eventually I went into fight mode. I took the stairs slowly bringing both feet to each step before taking the next. When I got to the bottom another co-worker was waiting. I wanted the ground to swallow me whole when I realized they witnessed my descent at the speed of molasses. I called my sister Elena that night and cried tears of embarrassment, shame, and fear.
The fear lit a fire to find that adult specialist. I enlisted the help of my friend Colleen who is a physician’s assistant (PA). She found me a specialist and offered to be my advocate for that appointment. I realized after the pain management appointment that it’s best to let my dad be my dad and not my doctor, so I was grateful for her offer. I called to schedule and the first available was three months away.
While I waited for February to roll around I picked up PT again and added pilates to the mix to maximize my core strength. And yet my right leg gave way again. This time I was in the privacy of my home. One minute I’m rounding the corner from the living room to the kitchen and the next minute I am face down on the ground, my body splayed out like it should be outlined in chalk. It felt like a crime because my body had not betrayed me that hard in my life. Falls are commonplace. It’s not the fall that was a betrayal, it was how the fall literally went down. I can typically sense a fall coming and brace for impact. And in those split seconds on the way down I can identify the why: tripping over my own foot, or catching my toe on a raised part of the sidewalk, you get the picture. This time I didn’t trip on anything. My leg simply stalled out. Hence the corpse outline since I was unable to break my fall. If I was scared on the stairs at work, I was terrified now.
Aging was forcing me to confront my body and my disability in ways I never had before. 44 and sprawled out on the floor in my own medic alert commercial. I had fallen and thank god I was able to get up and miraculously suffered no physical injury. The bruises from that fall were psychological.
My cane came back into the picture after the stairs incident, but became a more regular accessory after the hallway fall. Prompting another first, bringing my cane to work. I psyched myself up as I left the house that day. I said aloud as I closed the door“you can do this.” On the walk to work I reminded myself that I do hard things all the time. Besides it was winter 2024 and I didn’t need the added risk of snow or ice bringing me down.
I was so nervous at work walking around with my cane, but it got easier to hold my head high and carry on with each hour. Later that day a friend and coworker gifted me a bracelet that spelled the word badass in block letters. Little did she know how perfectly timed it was and just what I needed. The cane was as much for physical safety as it was psychological safety because the fact was I couldn’t trust my body to support me anymore.
Losing trust in my body was a real low point. But then again pain is a cruel mistress. She is silent, invisible most of the time, and in my case inconsistent. Not knowing when she would decide to strike me down was getting harder to take. Chronic pain is exhausting and in turn isolating. It took so much of my energy just to work and do life that I had very little left over to be my usual, social self.
I was losing steam. Discipline is something I learned at the tender age of six - the difference between doing something because you want to or because you have to. One of my friends often says I am one of the most disciplined they know. They mean it as a compliment but I wish I didn’t have to be all the time. I was tired of giving so much to my body and getting little relief in return.
Just as I was ready to be done with discipline, February finally came and with it my specialist appointment at Shirley Ryan Ability Lab. With Colleen by my side, I asked all the questions and I got referrals instead of answers. But I was relieved to be in the hands of the right people. I was ready to give it my all but I wasn’t expecting so many labs and appointments. Each appointment begets another and another like a domino effect.
Lady pain came with some level 10 pain as I started to notice my overwhelm at managing my appointments with my work. Like the first time in 2021, one minute I’m going about the workday at home and the next my body stops me in my tracks as I try to get up from my desk.
I pushed my chair back and tried to move from seated to standing but this time my lower back was not having it. I had to brace my hands on the desk to get upright. This was a different kind of pain. I was uncomfortable no matter the position: sitting, standing, or laying down. Walking was slow, painful and difficult. I was miserable and I couldn’t fathom finishing the day, let alone meeting my friend for dinner later.
I left Bijou an emotional voice note explaining why I was canceling. Luckily Bijou didn’t take my raincheck and offered to bring food to me instead. I was grateful for her company, yes, but what I really needed was for someone to take care of me. When you can’t fathom doing everyday tasks like ordering or plating food, you know you’re in trouble.
As Madonna told her papa, I was in trouble deep. Some lessons are so big you need to learn them more than once. This last bout of pain forced me to do something drastic. A decision I made on my own. A decision I feel made me an adult because I usually run major decisions by someone I love, like my parents or my sisters. But I wasn’t looking for approval and I didn’t need anyone else’s opinion.
I decided to take medical leave. Even though my body was talking back it didn’t make it any easier. It was surprisingly emotional to see through. Bittersweet actually. The bitter sting of knowing your body needs a break at 44 and the sweetness of knowing you made the right decision for yourself.
If I have learned anything lately it’s this: I am the only person in my body. I am the only person who feels my pain. I am the only person who can decide what my body needs. We only have one life to live. And we only get one body to live it in. I want to ensure my body is here for years to come. I mean I’m middle aged, remember, so I’ve got a whole other half to go! I am taking the time now so that I can make the most of the years ahead. I’m grateful to have the time to focus on my body and my quest for answers. And I’m looking forward to soft lightning and Tuscany picnics please.
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