One Month Down

This past week marked one month since my surgery; on Thursday I visited my doctor for a regularly scheduled appointment to check my progress and change out another strut.

I was nervous this time as I know how painful a strut change can be now. In addition to that, we would have four kids with us so that immediately following my appointment we could be taking Matthew to practice. Nothing evokes sympathy from passersby like a frightened woman in a wheelchair surrounded by unruly children. As it happened, the kids were fantastic and, as far as I know, sat patiently in the waiting area throughout the entire appointment. Right now, most of the kids are at an age when my approval and love really means a lot to them, so they tend to try to at least maintain a facade of good behavior and argue over things like who gets to hold my hand as I’m wheeled around or who is going to bring me my pillow. The 13-year old is a different story; he knows everything, nothing impresses him, and nothing is more important than what he wants or needs. As much as I want to believe I could never have been this way at 13, I have to wonder.

They waved ferociously at me as I disappeared around the corner to the x-ray department. My doctor’s office has an odd system of communication which relies on cards with fruit symbols. I haven’t cracked the code yet, or even ascertained its usefulness, but I know that when you go to get an x-

*Awaiting my strut change at the Fracture Clinic.*

ray you are handed a yellow card with a banana on it and when you are done, the banana goes in a tray on the wall with a banana on it. I’m a little worried about the medical system in general if this is what they are using in lieu of email notifications, but I’m trying to stay optimistic.

X-rays are extremely annoying with a Taylor Spatial Frame; the tech is invariably confused, and has to ask what he’s looking at and which part the doctor cares about. He then proceeds to bend my leg in the most awkward positions. Usually this entails dislocating my knee cap and balancing the enormous rectangular metal frame around my foot on a single corner and holding perfectly still while my atrophied muscles scream from the abuse.

Back in the waiting area, I attracted the attention of a couple of nurses with my homemade frame cover. I’ve been walking around with different colored frame covers for a few weeks now, but this is the first real notice anyone has paid. It takes a very specific audience to appreciate the ingenuity and skill required to design and sew a cover for an external fixator and I enjoyed being lavished with praise. Even my doctor complimented me on it when she came in. Dr. Workman was supposed to be taking vacation for a couple of weeks, but as I am now her most favorite patient, she made a special trip in just to see me.

Dr. Workman, who I cannot possibly call Kimberly due to my absolute reverence for her as a mystical super human, is the only doctor I have completely trusted since the onset of my illness fourteen years ago. She is younger than me if crow’s feet and hair color can be believed, and has the kind of tan and naturally lovely appearance you would expect to see on a carefree hippie. She has three children who almost attended the appointment with her, but last minute decided they’d rather go for ice cream with their father. In addition to being this likable woman who says things like “F-bomb” and laughs at even my stupidest jokes, she also happens to be the foremost authority on lower limb deformities in the region. If you are toying with the idea of trying on an external fixator for a few months, I’m happy to offer an endorsement for her as you really won’t find more capable hands.

My x-rays showed the bone growth of a natural over-achiever; rather than worrying about a non-union from bone that won’t grow, we are now worried that the bone is condensing too quickly and will make my daily strut modifications more difficult and painful. All in all, she was extremely pleased with my progress. My swelling is minimal, the pin sites are in good shape, and my foot is noticeably flatter than when we started though I still have some ways to go. The main purpose of this appointment was to change out one of the rear struts- the same difficult one from my last appointment- to a slightly longer strut to continue the expansion. I got a picture of the Claw this time, but it doesn’t elicit the same level of fear anymore as the strut change was fairly simple and painless.

Once the strut change was done, we were free to go… unless… oh, did I want to do something about that top wire that was causing me so much pain every time I moved? She gave me the option of waiting until my next appointment to remove the wire, or do it now. I elected not to wait any longer as the pain was pretty

unbearable and all waiting would accomplish is provide me adequate time to elevate my stress level. It took a moment to round up the supplies, but in no time at all she was cleaning the pin sites on either side of my leg with alcohol and I sat back, gripped the sides of the table, and tried to keep my breathing steady.

*Before photo of the top wire with inflamed and irritated tissue surrounding the pin site.*

The process for removing a wire is remarkably simple. The wires are culled on each end to hide the sharp points, so she unbent these on either side and unbolted the tiny vices holding them taut to the frame. With the wire now free and

protruding from both sides of my leg by about four inches or so, she snipped the end of the wire on the far side of my leg as close to the skin as she could get without nicking me. Gripping the remaining end of the wire with pliers, she gently wriggled the wire back and forth as she pulled until I could feel the end break free from the bone and it whipped out of the remaining tissues like a lawn mower cord. There was very little blood, the holes which had seemed enormous closed up almost instantly, and thanks to the pain medication I took before my appointment, there was relatively little pain beyond a sharp twinge at the end.

*After photo of the pin site immediately following wire removal.*

I asked Patrick to film the entire thing, and he did his very best, but he was more startled than I was when the wire flew out and his sudden jolting camera work shows it. I showed the video to the kids on the way home and for once I was able to impress that stubborn 13 year old. Maybe next time I’ll make him watch in person.

You too can watch the video below…

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Halfway There

I won’t lie- it’s getting harder now. In the beginning, only two or three of the struts would change in a day, but now that the ankle is fully separated, the upward rotation has begun and the strut changes are more difficult. Here comes the pain.

My “prescription” is a 29 day plan with daily modifications to each of the six struts on my Taylor Spatial Frame, trackable with an iPhone app that sends me reminders throughout the day and allows my surgeon to monitor my progress. Yesterday was day 15 of 29, which means I’m over halfway to a flat foot.

I won’t lie- it’s getting harder now. In the beginning, only two or three of the struts would change in a day, and in only 1 mm increments. Now that the ankle is fully separated, the upward rotation has begun and the strut changes are more difficult. Each of the struts move every day now, and most in 2 or 3 mm increments. The dials are more difficult to turn and the pain is reminiscent of a vice slowly crushing my bones.

This pain kicked in to high gear at my last appointment, just three days ago. Two of the struts on the backside of the frame, the side which is expanding, were too small to expand further and had to be changed out. As the entire frame is a complex engineered matrix of tension and compression members, one cannot be removed without imminent collapse of the remaining struts unless first placing some sort of support to hold the frame in place. In the past, the doctor would thread long bolts through the metal rings around my foot and leg to hold them stable, but my doctor brought out a new device invented by one of her colleagues during her fellowship. She called it “the Claw”. Small clamps bit down on the frame rings and she tightened the device to stabilize the frame. She started with strut number 5, and I leaned on my side and chatted with her as she worked, reading from a list of questions I’d been compiling for her. We addressed odd items such as whether or not such a thing as a bleach bath was advisable or if this was some crazy alternative treatment akin to putting a knife under one’s bed to cut the pain. (Knives under beds don’t work, just FYI. I highly recommend narcotics instead.) She was fine with a short bleach bath to disinfect the pins and we moved on to the efficacy of muscle massagers as she finished up strut 5 and began to work on strut 4.

I was facing the wall when I felt the frame begin to collapse, and with it my ankle. Patrick claims it was nearly imperceptible, but as strut 4 was pulled from the rings, I felt a crushing pain that stole my breath and forced a wash of tears through my tightly closed lids. I stared at the wall in silence. The doctor was becoming frustrated as the new strut was refusing to fit into place no matter how much movement in the frame she elicited. She left the room to find a different strut and I rolled to my stomach, buried my face in the pillow, and sobbed. Patrick hurriedly offered me more pain meds from the ready stash he had prepared before we left the house, but I couldn’t bring myself to move enough to reach out and take them. “I can’t

*The angle between foot and foreleg is gradually beginning to decrease with greater strut movement.*

move,” I gritted through clenched teeth, and the doctor rushed back in with the new strut. I was kicking myself for not having the presence of mind to take more pain medication before coming in, but I really wanted to have a sober conversation with her this time.

She struggled through another long period of tugging and yanking on a frame that took turns stretching and crushing my freshly healing ankle bone. “I hope I don’t offend you if I drop an F-bomb,” she finally said, and our laughter helped to ease both the tension in the room and the pain in my leg just enough to allow her to get the strut in place. A few minutes more and the horrible claw device was gone. I could sit up, but the throbbing and visible swelling in the tortured limb was just beginning.

Just prior to this exercise, I had discussed my desire to reduce my pain meds to something weaker and hopefully less addictive. I take Tramadol during the day which is an effective pain medication that doesn’t interfere with cognitive abilities and has a very low risk for addiction, but at night I need something stronger for sleep. She agreed to prescribe hydrocodone to replace the heavy dilaudid I had been taking, but as Patrick wheeled me toward the pharmacy after our appointment, I began to doubt my wisdom in the timing of this change. I was reducing my ability to battle pain at the same time I was increasing a number of activities which would increase it: larger daily strut movements, at least two more strut changes like this one to come in the next two weeks, and the next day- Wednesday- I would physically return to work which meant an hour or so of driving in traffic each way and a few hours on crutches.

Patrick assured me it would be fine and we would just call the office if it wasn’t. Patrick is very different from me in the way he handles problems. I worry about every potential situation before it can happen so that I have the answer to each problem already solved and at the ready. He does not worry and instead points out the futility in such an endeavor to actually change what’s going to happen, promising to cross each bridge when he gets there. There are merits to both methods, but I am noticing that Patrick has far fewer wrinkles and gray hair than I do.

*Swelling in foot increasing the likelihood I will be mistaken for Miss Piggy on the street.*

I took a hydrocodone on the drive home from the doctor’s office. An hour later I demanded something else as my head was fuzzy, but the pain was just as sharp and bone-jarring as if I’d taken nothing. That night was the hardest one since I’d left the hospital and Patrick jumped up multiple times to fetch me more pain meds when the schedule would allow. My Achilles tendon was on fire, my foot looked like a muppet appendage, and every muscle in my foot and leg took turns spasming and jerking on the offended ankle.

By morning, the pain and swelling had calmed down enough that I felt confident I would be able to drive to work for my first day back without passing out from the pain. I am obviously not allowed to drive while taking pain medication (laws and what-not), so I spent the morning working from home and elevating my foot until the very last possible moment. To be to work by noon, I have to leave the house at 10:30, which meant I had to call in to two of my meetings on the road to attend over the phone while driving with a swollen leg using my left foot. Patrick was terrified I was going to kill myself or someone else, so I just told him not to worry and we’d cross that bridge when we got there. He tucked me into the driver’s seat and gave me a very serious lecture in his most serious voice and then kissed me like we’d never see each other again.

The left foot accelerator pedal we had installed took some getting used to. I did mistake it for the brake more than once on the drive, but I drove slowly, put both hands on the wheel like a student driver, and forced myself not to let my mind wander. I survived. I pissed off a motorcyclist as I very slowly weaved my way up Germantown Road, clenching my teeth around every sharp turn, but aside from an angry shaken fist as he finally passed me at the top of the hill, I arrived at work unscathed and having caused no bodily harm or property damage along my trek.

It was a relief to be back at work and into the swing of things again. I was coaxed into showing my foot to the attendees in my first meeting of the day, but after that everyone else just commented on my lovely foot covering and said it was nice to see my face again. Hard to believe since my face hasn’t seen the sun in weeks, but nice to hear anyway. Shortly after my second meeting of the day, I was gifted with a key to my very own golf cart, mine for as long as I am on crutches and unable to board the shuttle that runs between campus buildings. I took my work buddy, Jarrod, for a spin around campus as he showed me the ropes of how to get around behind the buildings, where to park, and for God’s sake to follow actual traffic laws and not roll through the stop signs Marie!

By the end of the day, I was exhausted from all the crutching and my leg was begging me to lay down. I informed my leg we still had an hour and a half commute home and it began to shout in the form of angry muscle spasms that jerked on the frame and squeezed my ankle. This poor ankle. It’s been through so much. When this is all over, I’m going to treat it to a few days lounging in the sun on a beach. No walking, no frame, nobody trying to make it change when it doesn’t want to. Just some margaritas and the sound of mother’s screaming at their children in the distance. Heaven.

I called my doctor the next day. I informed the office I would be at work until 5 and would then swing by to pick up a prescription for something better than what I had just received if they would be so kind as to write a different prescription. The nurse was sympathetic and assured me she would see what she could do. At 4:59, they called me back to say they had made it happen and my new prescription would be waiting for me at the nearest pharmacy. After another day of driving and crutching after another night of agony and limited sleep, it took all my mental coaching abilities to convince myself to extend my commute with a detour to the pharmacy. I knew, however, that if I didn’t do it now, I would run out of what remained of the dilaudid in a day and I would spend the weekend in abject misery.

I parked as close to the pharmacy as I could, but once I made it up the pharmacist’s window, I was informed they were out of the medication. Not to worry though! All I had to do was take this hard copy signed prescription down the block to the neighboring building where there was a smaller pharmacy that had it in stock. I crutched a block in the heat, clinging to the prescription with two fingers and begging my arms to go faster. I waited nearly an hour for this next pharmacy to fill the prescription, and then crutched back holding the bag of medication with my curled fingertips. I stopped twice to catch my breath and willed the car to roll closer to no avail. By now every muscle in my lower leg and thigh were cramping up, but I made it to the car, threw my crutches in the backseat while I balanced on one leg, and collapsed on the driver’s seat.

I texted Patrick to let me him know I was on my way so he could start worrying and I relayed my little sob story to him. He responded with adequate sympathy and I felt foolish. “No, I”m okay, nobody tried to shoot at me or eat me. I’ve got to stop complaining so much.”

His instant reply? “Nah, it’s you.”

Find somebody who gets you; it’s so much better than trying to change.

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Of Pins and Pain and Love

Love makes hard things easy, makes weak people strong, and makes the most difficult parts of our lives the happiest.

I couldn’t have done this without Patrick.

He scoffs at this when I tell him, but I remind him that I simply WOULDN’T have done this without him. I had no intention of even trying to change this foot before I met him, and it was only upon his eager insistence, his unwavering optimism, and his highly convincing confidence that I was persuaded it was possible.

Early on in my married life, I came to realize the myth that all a woman has to do is sit around waiting for a prince to show up and take care of her was just that- a myth. With two children in diapers, I made the decision to take my family’s financial future into my own hands and started my degree program in Engineering. I was allowed to do this on the strict caveat that it was not allowed to cost my husband a dime. I took out loans, both subsidized and unsubsidized, finagled the department to give me a few scholarships, and gratefully relied on my little sister’s generosity as she babysat for me. My husband at the time was not the sort to get up at night with a baby, so I was still a full time mother and housewife the entire time. By the time I graduated and got a job, I was accustomed to doing everything without help- planning for my family’s future, taking care of the kids, buying and selling homes and stock investments and running the household- everything. After I left my husband, my load didn’t really get heavier, but my confidence fell and I had to learn how to do everything alone without even a cheerleader to believe in me. And so I did.

But over the past year, Patrick has taught me to let go of the reins a bit and learn to accept a little help. I still struggle with it, but there isn’t much I can do about it these days with a cage on my foot. In the hospital, he slept sideways in a recliner, his head lolling over one arm of the chair and a leg haphazardly drooped over the other. He woke instantly at the slightest sound to ask how I was doing and ran out to chase down a nurse every once in a while. He stayed right at my elbow as the physical therapist forced me to walk up and down stairs and back and forth along the hallway on my crutches before signing off on my release.

When we arrived home from the hospital, he was too worried I would fall and instead carried me up two flights of stairs like a baby in his arms. He has managed all of the instructions from the doctors as I’ve been too drugged at most of our appointments to comprehend their conversations, and he has completely commandeered control of my medications. (The two times I have taken this into my own hands so far I took the wrong dose and

didn’t write down the time.) He cooks for me, makes me coffee every morning, does all the housekeeping and laundry, and watches all five of the children.

Of all of these chores, however, by far the kindest and most difficult is my pin care. Pin care is vital to prevent infection and will occur every day until my frame is removed. If performed improperly, the skin around the pins may heal wrong and cause tenting, a situation where the skin grows up around the wire in a cone and leads to skin tearing and irritation with any movement. If all of the drainage and scabbing is not removed each day, infection can brew and in no time this can lead to a deeper infection which may tract to the bone. Nearly every complication with a Taylor Spatial Frame results from problems with the pin sites and most of these can be prevented with adequate pin care.

Each evening after the kids have been put to bed, I take a shower and soak my leg with the frame in water. I am only allowed to use Dial antibacterial soap and I lather up my knee as I sit on my shower bench and rinse the soap down my leg over the pins. When I’m done, I towel-dry the frame and use a fan or blow dryer to dry the rest of the droplets. I lay down in bed with my leg elevated on a one foot-high foam wedge pillow and Patrick takes over. Using a sterile cotton-tipped applicator and sterile saline, he must diligently scrub each pin and gently push the skin back from the wire all the way around. Each pin requires a fresh applicator which must be opened from sterile packaging. After the first few cleanings, the pin sites were inflamed and irritated; even gentle pressure hurt immensely and with each of my gasps he would stop

and catch his own breath, visibly upset at the pain he was causing me. He must watch for infection and monitor each bruise and blister closely to report it the doctor, and sometimes this involves tracing a line around a reddened area to see if it spreads or snapping a photo to email to my doctor. Once each pin has been cleaned, he places dry gauze carefully around

*An irritated pin site- excruciatingly painful with each movement.*

each of the pins which are still draining and tightens the plastic clip on the wire to put pressure on the dressing. When this is finished, he turns the struts. There are six of them and the changes have gotten larger as the ankle has now been separated and we are beginning the movements to raise my toes and lower my heel. He turns the dials slowly on each strut for fear of hurting me, but I groan and gasp anyway.

The entire process takes about an hour and we have a pretty good system now. He puts Bob’s Burgers on to distract me and we laugh and make fun of each other the whole time. If you don’t know Patrick, you don’t know that he is not good with these things. He cannot stand gore and his idea of what constitutes gore is pretty pathetic on my scale. While I knew I could count on him to get the door for me and help out with cooking, I honestly thought I’d be on my own with most of the raw and dirty medical procedures.

*Turning the struts- that one in the back needs a little help sometimes.*

But love is odd.

Love makes hard things easy, makes weak people strong, and makes the most difficult parts of our lives the happiest. It makes a man who hates the site of blood buck up and take over without comment or complaint because he doesn’t want me to struggle on my own. It makes a woman who likes to complain bite her tongue when it hurts because I don’t want him to worry that he’s hurting me.

I can’t walk, I have a monstrosity on my foot that rivals some of the best horror movie props, and I have never been happier in my life. Thanks to love.

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Well, Shit

I remember getting my first pap smear when I was sixteen. I didn’t take my bra off, which confused the doctor who just shook his head quickly at the nurse and said not to worry about it. I was so obviously mortified by nudity that he stopped trying to make conversation about halfway through and just got in and out as quickly as possible.

Those were the days. Sometimes I miss my dignity and self-respect. After a couple of decades filled with multiple surgeries and childbirths, I don’t really remember what modesty feels like anymore. I suppose every woman gets that way as she ages; dropping her panties and spreading them for public viewing just becomes an old habit. Right now, though, I am feeling pretty lucky that regularly occurring indignities no longer phase me.

Narcotics are amazing. If you have pain- I mean real pain, the kind that won’t let you focus on anything else- narcotics can be your savior. At 23, fresh out of the hospital with a bandaged splint on my right leg and a skin graft site covering my left cheek, I was grateful for the existence of narcotics as well as my mother’s insistence that I take them on schedule to avoid the pain all together. Wise advice from a seasoned RN. She failed to mention that narcotics have a miserable side effect though: Constipation. I can’t recall how many days went by before I finally told her in tears that I couldn’t go to the bathroom to save my life and things were starting to get dire. You would think by this point I’d have had no secrets left from her. This is the same caretaker who had catheterized me herself in the hospital and was at this point blow-drying my naked rear end twice a day to speed the graft site healing. Still, I waited to enlist her help until I couldn’t wait any longer.

fleet — Fleet enema. (Not the actual bottle used in this story.)

My mother is a saint. She patiently explained to me that this was very common with narcotics and gave me some stool softeners and calmed me down. When this failed to do the trick and instead exacerbated an already somewhat urgent situation, she ran to the store to buy a Fleet enema.

If you’ve never had an enema before…screw you. I don’t how your karma is so great to have avoided this major life milestone, but I’m certain it will catch up with you. I’m off-topic. An enema is either water-based or oil-based and is essentially just a big squirt bottle full of liquid to be injected directly into your rectum. Once it is in there, it breaks up whatever stool is causing a blockage and lubricates the pathway to enable you to poop. It’s not rocket science, but it’s effective. In order for this to work, however, you have to squeeze your anus closed and not let anything out until it has been in there long enough to accomplish something. This is the hardest part since after days without a bowel movement your lower intestines are already full to bursting and adding more liquid to the mix just makes it worse.

I very vividly remember laying on my side in tears in my mother’s bathroom as she pulled my cheeks apart and squirted the Fleet enema in, the whole time saying urgently, “Now don’t let it come out!” I laid that way for about fifteen minutes until I couldn’t stand it and leapt for the toilet. Thankfully, it worked, but it was a few days before I wanted any more than a liquid diet.

My relationship with excrement has pretty much gone downhill from there. Once I had children, my definition of gross changed drastically on the day I found myself sitting in a college classroom certain that I could smell poop. I checked the bottom of my shoes and starting looking around at the people next to me to find the offender. Eventually I noticed the smell got stronger every time my hand came near my face… I turned my hand over and sure enough, there was a line of baby poop smeared up the side right below my pinky finger.

Fast forward a decade and now I have a few more experiences with narcotics under my belt. I’ve learned to avoid my previous pitfall for the most part with proper supplements and diet, but the narcotics I was on following my recent surgery were stronger than anything I’ve had since my original illness; I simply wasn’t prepared. It was five days before I finally broke it to Patrick I hadn’t gone to the bathroom. We were on our way in to my post-op follow-up appointment and I had just thrown up the entire contents of my stomach. The doctor was concerned enough by my admission to call in the advice nurse who specializes in such things; the advice nurse seemed very concerned. I was weak, my pallor was poor, and my stomach wasn’t letting anything else in until I fixed this. The nurse was very concerned and advised us to go the emergency room if this went any longer. Since we were in the area, and already had a nice hospital wheelchair, we went straight to the emergency room from the doctor’s office.

Constipation does not rate high on the triage scale, unfortunately, and after one failed Fleet’s during which I sat on the toilet while the nurse haphazardly stabbed the tip of the bottle around squeezing oil all over my rear end, we waited with no further assistance and no resolution for a couple of hours. Waiting is one my least favorite things, right behind waiting with snakes. So we went home.

My mother was at home watching all of the children, and had earlier purchased a Fleet enema in anticipation of this very moment. As mothers do. We ushered Patrick out of the bedroom and I laid on my side positioned so Mom could reach the sink for warm water while I kept my foot elevated on a pillow. As she pulled my cheeks apart, I raised my head, smiled lovingly at her, and said, “Wow, this is just like old times.” Thank you, Fleet, for bringing mothers and daughters together for generations.

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