I'm Fine. -- A Practical Guide to Life with Chronic Pain

Chapter 1 – Why I’m Here

Feeling like I was going to faint in the shower was my clue as a kid that I needed to stay home sick from school. Bring on the noodle soup and Bob Barker! I was a very serious student, so feeling sick was not reason enough to skip tests or get behind on homework. Selfishly concerned more about my grades than anyone in my germy path, I had to be on the verge of crumbling in a heap in the shower before conceding that perhaps I was sick and needed to stay home.

And so it was in January 1996. Way past high school and several years past college, I had a pretty nasty cold and had uncharacteristically called in sick to my corporate desk job in San Francisco.

I was sitting on the couch in my sweatpants and T-shirt, legs folded and tucked together to my left. Sensing a very productive cough was on its way, I reached for a Kleenex on the table to my right. I am right-handed, so I will forever wonder why I did not use my dominant hand to simply pluck that tissue less than a foot away. Choosing instead to use my left hand changed my life in an instant.

As I reached my left arm across my body to reach for the tissue box, I coughed a big, heavy, juicy cough. I coughed while twisted, much like that post-workout spinal pretzel stretch that is supposed to feel so good. This was not a feel-good pretzel.

I never got to the Kleenex. Instead, I saw stars like Wile E. Coyote in an Acme explosion gone wrong. My lower back clenched up and I gasped for breath from the pain. Feeling like I needed to be on a flat, hard surface, I fell to the floor and stretched out. The pain intensified. I needed help.

I managed to crawl to the phone, yank it to the floor by its cord (ah, 1996), and called my husband at work. Grateful he was at his desk, I explained I had hurt my back, was on the floor and needed him to come home and take me to the doctor.

About 90 minutes later, after a cursory exam by an ER doc, I was relieved that my description suggested I had merely pulled a back muscle.

Take it easy, rest, and ice your back with a bag of frozen peas.

I was just shy of my 28th birthday, with no clue I had done much more damage than simply pulling a muscle.

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The intensity of my back pain eventually subsided. I went on with life, not thinking much about the occasional soreness that demanded my attention.

The morning after my 30th birthday, I woke up with a super sore back. I had spent the evening hunched over playing Skee-Ball® at Chuck E. Cheese (AWESOME place for a milestone birthday!) with friends and family, determined to earn enough tickets for the highly coveted 20" Chuck E. doll.

My 30-year-old self proudly clutching Chuck E., flanked by my husband Rob (right) and two of my favorite in-laws (Rick and Beth)

I smirked as I rubbed my achy back through my pajamas the next morning. I guess this is what 30 feels like!

About a year later, I was in an exercise class. I bent over to pick up my 8 lb. hand weight (I was feeling pretty buffed and proud to have worked up to eight pounders). The weights were stacked near my right leg. Once again, in a life-defining moment, I reached with my left arm across my body to pick up the weight on my right side. I never got there. Instead, my back cramped up and I immediately struck a pose like the guy on the Doan’s® pills bottle.

I spent a couple of months adhered to bags of frozen peas before finally seeing a doctor. Another cursory exam resulted in my taking a Body Mechanics class to learn not to reach across my body anymore. Meanwhile, my cube farm coworkers started calling me Maestro since I often stood in front of my computer, keyboard propped on an empty copy paper box, tapping out reports and analyses with great flourish. Sitting was just too painful.

A year later, I had a new job and a new doctor. At the end of the get to know you new patient appointment, Dr. Singh asked, Is there anything else we haven’t talked about? Anything else I need to know about?

Well....my back sort of hurts.

Dr. Singh settled back into his chair, asked some gentle but probing questions, and was mystified why nobody had bothered to order an x-ray over the now four years of chronic back pain. As he quickly ordered some imaging, I learned my first lesson in the importance of being a self-advocate for my health care. I had wondered over the years if I needed an x-ray or some other testing on my back, but I was too young and insecure to dare instruct highly educated doctors on how to do their jobs. Now years later, with more confidence and experience, I am not demanding with my doctors. But I am certainly more vocal when talking with them. Some hard-learned advice: speak up and do not be afraid to ask your doctors questions about how they are addressing your health concerns. It is your body; you get to know what’s going on with it.

That belated first x-ray ordered by Dr. Singh led to a neurosurgeon who ordered an MRI. That led to a largely unsuccessful round of physical therapy and cortisone shots. A pretty massive surgery was then recommended, which led to a second and then a third opinion. While reviewing the MRI with me and my husband, the second opinion surgeon pointed to the disc blowing a bubble into my spinal column and said with some incredulousness, You must be in excruciating pain.

Well, yeah, I guess.

That was the moment I learned I have a higher-than-average pain tolerance. While one might think this is a brag-worthy personality trait, I am here to tell you it can get you into some deep and challenging holes.

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I was officially diagnosed with degenerative disc disease involving two discs in my lower back. The disc between the bottom-most vertebrae (S1 and L5) was the bubble-blower. The disc above it (between L5 and L4) was trying to be a copycat.

A spinal fusion surgery was set for December 18, 2000. I was 32.

The plan was to remove both offending discs and then place titanium cages in the spaces where my discs used to be. The cages looked like large, hollowed-out screws with the ends chopped off.

In normal cases, the cages would be inserted, and then a ladder of yet more titanium would be constructed around them, using vertebrae as anchors. The ladder would keep the spine stable for the year it would take bone to grow in and through the cages. The end result: a fused spine encasing titanium cages.

But I was not normal. I was 32 and at least half the age of the typical patient for this type of surgery. Due to my young age, lack of smoking, and otherwise excellent health, my surgeon and I agreed that he would put a lot less titanium in my back than usual. We were betting that my young body would grow enough strong bone around and through the cages that all other ladder building wouldn’t be necessary.

And it wasn’t necessary. Until it was.

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The surgery went according to plan without complications. Yippee! I was in the hospital for a week, released on Christmas Day of 2000. A shower and my own bed were the best gifts EVER.

My surgeon told me to expect a 6-9 month recovery. Having lived my life often several deviations from the mean, I fully expected to beat that time frame through A-student willpower, determination, and smarts. I told my boss I would be back in the office in 4-6 months, with absolutely nothing to back that up other than my smug assumption that I could think my way back to good health.

At the end of six months, dangerously close to being a big fat liar, I told my boss I could return to work. Sort of.

My daily wardrobe still included my fiberglass clamshell back brace, I was not allowed to ride the wiggly jiggly commuter train to work, and I still needed to spend a good chunk of my time not sitting. So I worked from home, part-time, for a month. I quickly learned that working from home is dangerous, as I did not know when to stop. Nothing at home could compete with the thrill of FINALLY being productive and valuable. Six months is a long time to feel like a totally worthless slug. So I worked and worked and pushed and pushed. It felt so good to be busy again!

In August 2001 – just shy of eight months post-op – I returned to working full-time in my San Francisco office. But I had pushed too hard and lasted just ten days. Two months later, my surgeon looked at me with concern and confusion as I sat in front of him, filled with pain and fear.

You were doing great and then you went back to work and all hell broke loose, he said, sharing my disappointment.

He informed me I would not be returning to work – likely ever again – and ordered a third cortisone shot and a second MRI.

In my zeal and impatience to rush my recovery, I had arrogantly jumped back into life and work before my body was ready. I paid a huge price. Please let my experience serve as a cautionary tale. If you have surgery, take the time to LET YOUR BODY HEAL. Jobs come and go over a lifetime; you only get one body. Best to take care of it.

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Tests revealed that my bone had not grown solidly like my doctor and I had hoped. My second – and Lord willing, final – spinal fusion surgery was on June 10, 2002. In it, my doctor installed all the titanium ladders and bracing that an older, more typical patient would have gotten with the cages. Afterward, my doctor said that he was able to wiggle some of the bone in my unfused spine with his finger during the surgery. We had made a bet and we had lost.

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If you are of a certain age, you might spot Crow from Mystery Science Theater lurking in my back

The second spinal surgery was also successful by short-term standards – no complications. Whoo hoo! I have since dedicated my life, activities, shoes, appliances, furniture, coughing positions, and cars to ensuring that I do not need a third back surgery. Nevertheless, the two spinal surgeries did not give me the fullness of my old life back. I still have persistent pain. I still have lots of limitations. I still am not allowed to work. Technically, this is called Failed Back Syndrome. Yippee for another diagnosis.

I have had several other unrelated surgeries over the past decade, including an ACL replacement on my knee, an almost total hysterectomy (go lonely little ovary!), and a severely torn tendon repaired in my foot. Each surgery has taught me something unique unto itself. Additionally, in comparing notes with other chronic pain folks, I have found a commonality in the experience of pain, surgery, rehab, and life post-op that is worth sharing regardless of the source of the pain. Why you and I hurt might be very different, but how that pain ripples through our lives is likely very similar.

I am by no means an expert on pain and surgeries; I am just an average woman who hurts a lot. For decades, I have lived the relentless aches, fear, anxiety, frustrations, triumphs, and lessons of acute and chronic pain. Many aspects of pain are universal regardless of why you hurt. However, those of us who live in constant pain rarely speak openly and fully about our experience. Not just the experience of physical pain, but all of the emotional and psychological pain that accompanies it. It is time to change that.

So let’s talk.

Chapter 2 – Need Answers NOW? The Proverbs of Pain

You are in pain. You have lost hope. You want fast answers. You can’t handle the burden of doing a ton of research. You are tired of advice from people who have no idea what you are going through.

I totally get it.

So here is a quick list of the key things I have learned about pain over the years. The rest of I’m FINE. explains these points in more detail. But if you are super short on spoons (see Chapter 3), start here.

• The psychological aspects of chronic pain are not discussed nearly enough. Physical pain sucks. But there is also a huge emotional and psychological toll of living in pain. I have long believed surgeons should automatically provide referrals to psychologists. Pain does not just impact the body; it impacts the mind and spirit as well. (Recurring theme throughout the book but especially in Chapter 5)

• Encourage (or beg) your closest people to read "The Spoon Theory" by Christine Miserandino. It is an amazingly simple description of a pained person’s constant assessment of how to allocate their limited energy to live life each day. Talking in spoons (and forks) is a beautiful shortcut to communicating volumes in just a few words. (Chapter 3)

• A really good day is almost always followed by several bad days. Because you are human and normal, you will attack a good day with gusto to do All The Things. And then you will pay for it afterward. It’s a cycle. It’s normal. It’s OK. (Chapter 7)

• Life with chronic pain requires a constant balance of tending to your body and tending to your spirit. Body and spirit are often at odds with each other when it comes to pain. A healthy life with pain means some days you take care of your body (and feel unproductive and bored), and some days you take care of your spirit and let it soar (and deal with the resulting pain later). Pain isn’t all about the physical self. Life with pain isn’t either. (Chapter 7)

• It’s ok to have bad days or even bad weeks. Depression is part of the package with chronic pain. It’s OK to go there; just don’t live there. But if depression is a persistent roommate that just won’t leave, it is time to hire some movers. (Chapter 5)

• Wearing a (figurative) mask to hide the pain is totally normal and often helpful. But it is not healthy to wear a mask all the time. It is critical to find those safe people you trust to see you without your mask on. (Chapter 4)

• Being in denial is a fantastic coping mechanism for all sorts of pain! Unfortunately, denial works until it doesn’t. (Chapter 5)

• Physical pain is exhausting. A body in pain is working hard and consuming lots of energy. Remember this as you are sitting around, doing nothing, feeling like a slug, and wondering why you are so tired. (Chapter 8)

• Painsomnia is a real thing. Not being able to sleep because you are in pain is real, common, and annoying as hell. (Chapter 6)

• Chronic pain puts a strain on relationships, especially marriages. Couples therapy can be a gift to your marriage if chronic pain is a third wheel. (Chapter 5)

• Staying ahead of the pain means not waiting until you are writhing in pain before taking pain medication. Fears of addiction to pain meds are real and warranted, but so is the wisdom of