Cuddling with my frame.

Things I Wish They’d Told Me

The countdown is on- today marks nine days left until they remove this thing from my foot.  I’m excited, but another part of me is scared and I know that I will miss this in some odd, difficult to explain way.  I have only a little over a week left to put the enormity of my lessons and experiences down in writing before it is over.  Over the last four and a half moths, I gained valuable insights that I am eager to share with anyone considering a Taylor Spatial Frame or similar external fixator as an elective surgery.  In no particular order, here are a few things I learned along the way…

1. It is possible your pain will exceed the effectiveness of your pain medication.  

When you awake in the hospital from the initial surgery, the pain will creep up on you and as the surgical swelling increases, it is likely that your pain will far surpass the ability of the nurses to keep up with it.  As the initial swelling from the surgery recedes, you will become more comfortable, but over the months that follow you will inevitably experience excruciating nerve pain, infections, swelling, irritated pins, and even damage to your frame which will cause your pain to spike again and you will wish you had the skill to give yourself an epidural.  It was after one of these episodes I realized that I would never do well in a torture situation and promised myself never to let anyone trust me with important State secrets or bank account numbers.

2. It is going to look worse than it feels.

Yes, it hurts, blah, blah, blah.  Very quickly, though, you will become accustomed to the pain.  I can’t say it really stops hurting, or even that your pain tolerance grows, but you will get used to having sharp stings and aching swells and throbbing pressure and parts that burn.  It will cease to impress you and when people look at you and say, “Wow, that looks like it hurts,” as they certainly will because people are not very creative and they all have the same thoughts, you will likely respond at some point with, “It looks worse than it feels.”  Sometimes you will be lying when you say this, but for the most part, it will be true.

3.  Laying in bed will make you miserable.

Get up.  I know it hurts and you feel light-headed and you can’t imagine standing up and letting all your blood rush back into your limb, but if you don’t get up, it will be much harder tomorrow and the next day and even harder the day after that.  Get up and move around.  Go into the sunshine.  Laugh with other people.  Force yourself to go outside and be active even a little bit every single day because if you don’t, you will just be this miserable creature with a cage on your limb, and every day will last forever.

4.  You can’t stop taking pain medication just because you have no pain.

I’m very happy for you when the pain diminishes enough that you feel confident you no longer need your narcotic pain medication, but not taking it is going to bring you agony.  You need to wean yourself off of it and for that you need to talk to your doctor to make a realistic plan.  The worst part of my journey so far has been the chemical withdrawals.  Hands down.

5.  People are going to stare at you, everyone will think you want to talk about it with complete strangers, and you’re going to feel self-conscious every time you step outside of your own home.

Adults who know better will stare at you as you walk by.  Children will point and ask their parents what that is.  Some children will talk to you, and for some reason this will feel comforting and not upset you, perhaps because they are not afraid and aren’t rejecting you for being scary.  Adults will interrupt you when you are clearly reading an email on your phone in the elevator, or have headphones in, or even talking on the phone, to tell you a story about their aunt who had a broken toe because this seems like exactly the same thing.  Everyone will want to know what happened, but if you tell them you have been disabled for fourteen years, perhaps they will learn that nothing in another person’s life is inherently their business just because they are finally able to see it.  You will also take great joy in making up stories about what happened, and one of these will inevitably involve sharks and orphans and your bold, unbridled heroism.

6.  You will discover that very few places are REALLY ADA accessible.

You will go to a McDonald’s, for example, you will note that there is ADA parking, a wheelchair ramp onto the sidewalk, a wheelchair emblem on the window next to the entry door indicating it is ADA friendly, and then you will look at the door and wonder how a person in a wheelchair is supposed to open this thing on their own.  You will struggle with it yourself on crutches, or with a walker, or with a cane.  You will notice restrooms equipped with ADA accessible bathroom stalls, but a bathroom door too heavy and cumbersome for anyone other than an able-bodied individual to open.  You will note that the parking garage at work has ADA accessible parking closest to the garage elevator, but the whole garage is still a 500 yard walk to the building.  You will start to ask yourself how disabled individuals carry their own lunch trays, or make it to meetings across the building on time, or use vending machines when the card swiper is six feet off the ground.  You will get angry at people who do not hold doors, but you should because they are assholes.  Everyone should hold doors for everyone.  That’s just being civil.

7.  You will feel like a burden.

No matter how hard you try to contribute to your own household, you are going to feel like a burden on those you love at some point.  When you do, just tell them so.  Say thank you for everything, every time.  Be kind to them when they get tired of helping you once in a while.  And remember this will not last forever.

8.  You will never be able to sneak anywhere.

Your fixator will jingle with every movement, especially once you are told to loosen bolts, and you will feel like a cat with a bell on their collar.  Your crutches or cane will have a distinct sound and people will joke that they can hear you coming before you round a corner.  Hit them with your cane.

9.  You will gain weight.

Of course you will.  Your body will want calories because it is trying to heal, but you will be unable to exercise nearly the entire time.  When you are active, you will become exhausted so quickly that there is no hope of burning off that panda express you just ate.  Also, you will crave kung pao chicken as though you are a pregnant woman hatching twins.  Or at least you will if you have good taste.

10.  You are going to discover that you are capable of anything.

Even with a metal frame around your limb, you are going to soon learn to make adjustments to your daily activities that will enable you to go about your life very much as you did before.  You will see that your limitations only exist until you have invented a way to work around them.  You will drive.  You will walk. You will work and shop and clean and run errands.  You will go wherever you wish.  You will do whatever you want.  The only thing that will slow you down is your own doubt.

11.  You will love your frame.

You may sit up at night, your partner slumbering peacefully beside you, and marvel at this hunk of metal holding the pieces together on your appendage.  You will come to respect it, and you will learn to appreciate it as you recognize how it is giving you an opportunity to heal and regain your life which could not exist without it.  As you learn to put weight on your limb against your mind’s own unwillingness to do so, you will come to depend on it for the support and stability it provides, and when you loosen the bolts at last, you will feel scared that it is no longer protecting your bones from being harmed by your weight.  As the time approaches to remove it, you will realize it is going to be bittersweet.  This thing has granted you a new life and now you have to say goodbye, and learn to function all over again without it.  You will be unable to explain this sorrow to anyone but your own heart.

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My flat foot wearing a modified sandals and ready to walk.

An End In Sight

My little cheerleaders watching over the procedure.
My little cheerleaders watching over the procedure.

It’s been ages since I’ve written, and for good reason!  In the past month, my medical drama has steadily become easier and now this foot has taken a back seat the rest of the struggles and triumphs and heartbreaks and heart explosions that are my life.

I emerged from the dark cloud of anxiety and physical misery caused by chemical withdrawal from the high dosage pain medication so gradually that it is difficult to pinpoint exactly the day I just felt like myself again.  I remember an afternoon when I looked up at the sky and felt like smiling from all the happiness and love in my heart, and I realized I was okay.  I returned to being a busy working mother and allowed my foot to stop taking center stage.  Four of the five children in our blended household started the fall soccer season and their schedule on top of my demanding work schedule left me very little time to

Replacing the struts with stationary bolts for the long haul.
Replacing the struts with stationary bolts for the long haul.

worry about which wire was hurting the most.  I began to feel almost normal again.

The next phase of my healing journey had now begun.  My foot was flat with no further adjustments needed and in the follow-up appointment to my last surgery, the doctor placed two threaded bolts on either side of the frame to keep it from accidentally moving if the strut dials were bumped.  In the next appointment a week later, she placed two more threaded bolts toward the front of the frame and removed the adjustable struts one by one.  The girls accompanied me to this appointment and were exceedingly helpful attendants as they attempted to pocket some of the spare parts, spent an inordinate amount of time captivated by the water cooler and spilling water on the exam room floor, and had everyone on either side of the privacy curtains laughing hysterically at their giggling antics.

Bone heals fastest when it is under pressure as this stimulates the use of calcium; this is why strength training is the primary measure to combat osteoporosis- strong muscles put tension on the

Placing threaded bolts between the foot plate and leg frame.
Placing threaded bolts between the foot plate and leg frame.

attachment points of each bone, stimulating bone growth and increasing bone density.  Low risk weight-bearing activities are therefore considered essential to promote healing in an external fixator.  While I have been in a weight-bearing status since very shortly after the initial surgery, it was difficult to do more than rest a portion of my weight on my toes as I was standing while my foot remained cocked at a 40° angle.

Five wires pass through the bones in my foot- two through the metatarsals near my toes, two through the calcaneous, and one through the talus.  These wires connect my foot to the flat plate situated parallel to the ground; as my foot swells and my toes bend, the tissue around these wires aches and stings at various points throughout each day.  I was fearful of putting all my weight on my foot as it seems counterintuitive to avoiding pain- at first glance, it appears that any weight will just cause the wires to rip right through my skin!  To assist me with overcoming this fear, Patrick procured a fancy cane for me with a glow-in-dark handle and a violet floral print.  Little Riley takes every opportunity to use it as a sword whenever we are out and about and I let go of it for

My flat foot wearing a modified sandals and ready to walk.
My flat foot wearing a modified sandal and ready to walk.

even a moment.  With all of the wires in the way, wearing a shoe on my right foot is all but impossible.  I was able to modify a pair of sandals by cutting away the center strap and adornments; I tied loops on either side of the frame to fit the top strap through in order to keep the sandal from sliding off my foot as I walk and the result is a remarkably functional right foot.

The only hiccup I have had in the past few weeks was an infection in the deep tissue which failed to respond to antibiotics.  As the swelling and pain worsened at the site of the top bolt in the front of my shin, I began to worry the infection was spreading into the bone.  After an overnight stay in the hospital on iv antibiotics didn’t produce much improvement, my surgeon decided simply to remove the bolt.

There is much discussion on the online forum I frequent for individuals dealing with frames such as mine regarding the best method for removing the hardware for these frames once our time in the cage is complete.  Many individuals are proponents of having the entire frame removed in the doctor’s office with the aid of some valium and nitrous oxide.  My surgeon does not offer this option and instead schedules an OR visit with general anesthesia for every frame removal.  The reason for this, she explained, is that the large pins are actually threaded bolts which have been drilled into the tibia and fibula and adhered with an epoxy which can make them difficult to remove without some struggle.  It was one of these bolts which had become infected, but as she would only be removing one, we decided it could be done very quickly in the office and I would recover from the trauma.

Having experienced the fairly simple and painless removal of a long wire which ran all the way through my leg from one side of the frame to the other, I felt confident I could endure a single bolt being unscrewed.  After all, it didn’t seem to go that deep, right?  I walked into the doctor’s office a little nervous, but eager to have it out, and asked her if she would be using any gas or anesthesia.  She explained that she would have to go all the way downstairs and it was a very quick procedure hardly worth the effort.  I relented.  I wish I hadn’t.  I sat on the exam table with my legs up as usual and she placed a rachet over the top of the bolt and put her left hand firmly over my shin to hold my leg still.  She was about to turn to the rachet, but paused and looked at me

Pay no attention to that pool of blood under my leg.
Pay no attention to that pool of blood under my leg.

squarely and advised, “You’re going to want to lay down for this.”  I did as commanded and was grateful the nurse was near as I let out a blood-curdling scream as she cranked the first turn.  The nurse at my side grabbed my hands and squeezed, and they both reminded me to breathe as I clenched my jaw whimpering and the bolt kept turning.  She told me it was out, but the pain continued and I lay sobbing with my arms over my eyes as blood poured out onto the table from the gaping hole in my leg.  She quickly stuffed it with gauze, then wiped at the gory mess all over my skin so she could wrap the top half of my shin with a self-adhering rolled bandage.

Eventually the pain subsided and she asked me to stand on it.  I did and the pain was noticeable, but not unbearable.  She loosened the nuts holding the threaded bolts in place and told me to slowly walk around with my cane to see how my ankle could withstand the pressure without the support of the frame.  I paced around the room for a few minutes and she seemed pleased.  She tightened the nuts back up and gave me directions to loosen the nuts three times a day to “dynamize” the frame.  If I had no significant adverse effects from this, I am to loosen the nuts entirely on October 5 and leave them, walking completely on my own without any hardware support.

The last bit of good news for me was that my ankle is so well-healed she set the date for my frame removal on October 26.  This would be two months sooner than she had led me to expect before the first surgery.  I won’t see her again until my last x-ray to confirm the frame can come off just a few days before the removal surgery.  From now until then, I just have to walk and heal as fast as I can.

I’m so close I can already feel the flip-flops between my toes.



Walking with a Taylor Spatial Frame

I’ve created a short video of myself walking for posterity.  Someday I will show this to my grandchildren who will think I am much cooler than they had supposed.  Or maybe they’ll say , “Who watches videos anymore, Granny?  Why isn’t it a holographic projection onto my eyeball?”  Snot-nosed little shits.



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Awaiting my strut change at the Fracture Clinic.

It’s always something…

The surgery to lengthen my tendon was intended to reduce the unbearable fiery pain enveloping my foot, and in short order I could verify that it had worked.  I couldn’t feel my leg below my knee beyond some vague feeling along my shin and a couple of toes that tickled, but the nerves inside that let me know I was in pain were in good working order.  I left the hospital on Saturday morning eager to have an evening home with my children before they headed off to Idaho for a week of camping with their father, and I was relatively comfortable within a day of returning home.  By Monday, I had stopped taking the pain medication on a schedule and was down to a dose in the morning and a dose in the evening.

While I was out of pain and back to work, the numbness and uncertainty around recovering all the sensation began to get me down as the week progressed.  I felt myself losing my rosy viewpoint and began to worry I was sinking into a depression.  I was waking up anxious and pessimistic, suffering from cold sweats and goose bumps despite the +90° heat, and felt drained of all my energy.  I broke down crying on the phone with my mother Wednesday afternoon and admitted that I was tired of this and really felt like I couldn’t do it anymore.  As she is so adept at doing, she lovingly kicked me in the ass with a pep talk that both scolded and lifted my spirits.  “You can cry for a few minutes, but then you’ve got to get right back up and do it anyway because you don’t have a choice.”  She was right, of course.  The decision to start this journey was not one I could change halfway down the road.  It doesn’t matter how hard this road becomes; it is the only road here.

Regardless of her advice, I continued to indulge my newly developed habit of breaking down in tears in the evening after returning home from work, and on the following morning when I woke.  On Thursday afternoon, I saw Dr. Workman for my post-operative appointment expecting praise for so quickly getting back to my daily routine.  She was not pleased with me.  My leg was too swollen and she directed me to work from home until the following week.  I texted my manager from her office and had his blessing in a matter of minutes.  She offered to refill my pain medication, but I told her I was hardly taking any now and had plenty, and at the end of the appointment I made a comment about my concern at possibly beginning to suffer some depression.  She looked uncomfortable and advised me to look into counseling.  We left without another word about it.

I spent Friday working from home and had the swelling well under control by the time Patrick got home ready to take me out to  dinner and the Timbers game that evening.  I felt ill, shaky, nauseated and weak, but I dragged myself into the shower to bathe before he got home.  As I sat on the bed listlessly drying my hair with a towel, he walked in and could tell I was not myself.  I burst into tears again and admitted I wanted to go to sleep for a month until this was over.  My muscles ached, presumably from laying around with virtually no activity for so long, and the overwhelming sense of despair and hopelessness that had taken hold of me was physically palpable.

Because Patrick is wonderful, he assured me we did not have to drag ourselves to the game if I didn’t feel up to it, but I convinced him I would feel better getting out of the house and forced myself to rally.  My sense of physical illness gradually increased over the next hours as we feasted on tacos at our regular pre-game dinner spot and then lined up in the waning evening heat at the ADA gate.  I visibly drooped in my wheelchair as sitting upright made me feel faint.  I couldn’t stop shivering and Patrick suddenly got very worried.

“You look miserable,” he said.  “Are you okay?”

“No,” I admitted.  “I feel awful.  I don’t know what’s wrong.  I must be getting sick.  My head hurts and all my muscles ache.”  I was on the verge of uncontrollable tears the entire time.  Patrick had brought a stash of medications with him to dole out if my foot began to swell and hurt, so he offered to give me something once we got inside and could find some water to take with them.  I agreed, not really thinking it would address what was wrong, but I didn’t want to force him to take me home when he sacrifices so much already every day all day long for me.  We made it into the game and nabbed our new favorite seats- ADA seating behind the goal line with an unobstructed view.  I remained silent and pensive, and he remained worried, until he urged me to talk to him about what was wrong once he’d found some water for me.  He doled out some medication and I stared at it in the palm of my hand as an idea struck me.

Without taking the pills, I turned to my iPhone to google “Opiate withdrawal symptoms” and realized in a matter of seconds what was going on.  In the week and a half or so that I had been taking such a high dose of medication around the clock- every three hours- my body had developed a chemical dependency that it now had to withdraw from when I suddenly stopped taking them.  The symptoms were everything I had been experiencing over the past few days since I had drastically reduced my meds: nausea, cold sweats, goose bumps, fatigue, malaise and depression, severe anxiety, muscle aches, headache…

“My god, Patrick, I’m going through withdrawals,” I said.

“Of course,” he agreed.  “Makes perfect sense.”

I took the pills he had given me and kept reading, suddenly ravenous for more information and how to get through it.  I read numerous forums where individuals extolled the virtues of “quitting cold turkey” versus “weaning”, recommendations for various detox secrets, and the inevitable advice to seek assistance from a medical professional.  Time ticked by as I read and soon I realized the symptoms had almost entirely abated- about 40 minutes after I had taken my medication.  By the time the game started, I felt more like myself.  As I do whenever anything important happens to me, I texted my mother, who also happens to be a seasoned ER nurse and my own personal webmd resource.  She advised me to take a smaller dose of the medications I had been taking and reduce the dose by a quarter each day or so, in small increments, but fairly quickly.

The next day we developed a schedule for my medication again.  I wasn’t taking a high enough dose to completely eliminate all of the withdrawal symptoms, but the symptoms would ease each time I took something.  I noticed that I could go about eight hours before I began to really feel miserable, which meant mornings were dreadful if I slept late at all.  That weekend was hell as the headache manifested itself in every bone in my face and nothing could make it stop.  I was terrified of taking anymore of the pain medication than we had agreed, which meant toughing it out when my foot swelled at the end of the day.  The depression would come in waves that swelled over me and pushed me to the edge of complete despair until Patrick would force me to take something and the darkness would gently ebb away.

Patrick stocked the house with supplies as though I had the flu; I was too nauseous to bring myself to drink much water, so he bought me ginger ale and juice to try to keep me hydrated, and soup to entice me to eat.  My mother suggested seeing my doctor about a medication for the anxiety, but I hated the idea of taking yet another drug when I was already enduring such an ordeal.  I compromised by taking over-the-counter unisom- a fairly benign antihistamine commonly used as a sleep-aid- to calm myself in the evening and help me sleep.  I took to lounging in the tub for hours at a time to ease the unrelenting muscle aches, something I had not yet done with my frame for fear of infection.  I kept my foot out of the water the first time I tried it, but it was difficult to relax while I held my leg aloft the whole time.  I researched how to turn it into a bleach bath- an idea my doctor had already approved- and took to adding a quarter cup of bleach and epsom salt to my bubble bath which enabled me to soak my frame in the water.  According to my research, days 3-5 are supposed to be the most difficult part of the detox period, and I reasoned I had technically begun to detox around Monday when I suddenly ramped down my dosage.  The entire ordeal could last a couple of weeks, but by the middle of the second week I was feeling significantly better.

My weaning process took about three weeks total before I was no longer taking anything regularly.  As I was feeling better, I was also more mobile, which meant more swelling and pain from all the activity by the end of the day.  After many discussions surrounding my fear of going through this all over again, Patrick convinced me to take small doses of pain medication when I need it, and ONLY when I need it without a regular schedule to avoid developing a dependency again.  I had learned a valuable lesson- addiction is real and the risks have to be taken seriously.  I suddenly understood the necessity for strict guidelines around prescribing these dangerous medications, and I wanted to warn everyone I knew how easily and quickly they can become a problem.  I wanted to talk about it openly as I realized how common my own situation must be and how many people must be dealing with it silently.  So many of those struggling with chronic pain are in this difficult position, but I felt sharply the stigma surrounding the topic in my own disappointment in myself, as though I somehow had any control over how my body reacted to a medication I needed to survive my medical ordeal.  If I was judging myself so harshly, I wondered how others were judging me as well.

There is so much in life that we don’t see coming.  Even if we cannot be better prepared for the unforeseeable, we can at least be compassionate and have empathy for each other as we all stumble and struggle through our own unique trials.  I’m wiser now for this experience, and will know how to avoid repeating the same mistakes, but I’m sure to make new mistakes in my next ridiculous life fiasco.  The only thing I can really do is love myself regardless, as much as I would love any other flawed and struggling human being doing their best to survive.

It’s always something, after all.





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My flat foot recovering in the hospital.

One More Surgery

It’s been over a month since my last post.  I haven’t been able to write, either mentally or physically.  Too much has occurred in the last month for a single post, so I will likely have to break this into pieces, but I think my head has cleared enough to finally put it all down.

∗ ∗ ∗

Nearly five weeks ago, I visited my surgeon following the last day of strut turns, excited to be done and eager for her praise at my Wolverine-like healing powers and unflagging resilience.  She looked at my foot, still a little crooked and not quite flat, and broke the tragic news that I would need a new prescription to continue to move the heel down.  I was devastated when she handed me the print-out at the end of my visit- 12 more days.  Still, I was managing the pain well, even putting tentative weight on my foot, and told myself a few more days would just make sure it was perfect.

That was a Thursday, and within two days the sky fell.

In order to flatten my foot, the ankle movement required the top of my foot to lift and the rear of my foot to lower; the slow and steady incremental movements each day were designed to gradually move the bone into position while simultaneously stretching out the tendons and soft tissues which have not moved for a decade and a half.  By Friday, my achilles tendon was tired of this and had washed its hands of me.  My heel swelled to three times its size, trapping the nerve that runs near it, and spurring suddenly overwhelming pain that burned and stabbed in ever-increasing waves.  By Sunday, I hadn’t slept in days and had turned to writhing around screaming as my primary coping mechanism.  I learned what happens when pain reaches a level beyond what any human can bear- you don’t die or even faint, you just keep feeling more pain, more than you think your body is able to feel, until… well, there is no until… you can just always feel more.

Patrick drove me to the emergency room once he’d managed to coax me into rolling out of the fetal position to make it down the stairs.  It was a twenty minute drive, a thirty minute wait once we arrived, and another twenty minutes to see the doctor once we’d been given a room, so whatever good the pain meds were doing had completely disappeared by the time I saw anyone.  Luckily it doesn’t even occur to anyone you might be faking it when you roll in with a giant pin cushion for a foot.  (I’m always surprised at how much shock seasoned medical professionals display when they see this thing.)  It took five minutes for the iv dilaudid they gave me to dull the intensity of the pain to a bearable ache.  Fearing the pain had suddenly intensified due to infection (my arch nemesis), the doctor ordered a full blood workup and a fancy x-ray from a mobile machine that wheeled right into my room.  We reached my surgeon as well after some frantic texting and she gave me the day off of more strut changes, so we went home generally satisfied that  the pain would abate and we’d done our due diligence to ensure it was nothing more serious.

Monday I was back to turning struts, and Monday night I was back to not sleeping as I held my leg in the air unwilling to rest it even on a pillow for the pain it caused.  I called the surgeon Tuesday morning, utterly exhausted and unable to cope with more pain, and she urged me to come in to the office

A cartoonists rendition of an Achilles tendon lengthening stolen from another site that will likely sue me for this.
A cartoonist’s rendition of an Achilles tendon lengthening stolen from another site that will likely sue me for this.

where they would fit me in around their schedule somehow.  Once there, she reviewed the blood work results and assured there was no real sign of infection, and that the pain was simply the achilles refusing to stretch any further.  We decided the only option was to lengthen to tendon or I’d never be able to lower the heel further.

To lengthen the Achilles tendon, three incisions are made up the back of the heel.  The tendon is partially severed on one side, then the opposing side a few centimeters up, and then the first side again a few centimeters further up.  The surgeon then pulls down on the heel to stretch the tendon out and the remaining tendon between the severed sections gives way and twist sideways to add enough length to allow movement again.  As we did not need my ankle to move in the future, Dr. Workman considered severing the tendon completely, but she decided against this simply because my ankle would appear deformed afterward, which would obviously ruin my promising future as a middle-aged cellulite model.

I already had an early morning appointment scheduled for the coming Thursday, less than two days away, so she directed me to meet her at the surgery center instead and plan to stay the night.  I begged her in tears not to make me turn the struts again until after the surgery and though she hesitated for fear my bones would condense before we’d finished the repositioning, she finally relented with pity clearly written on her face.  Though still in tremendous pain, I went home relieved that we had a plan to make this stop.

Tuesday night was another night of agony and no sleep, and around 9am Patrick made the executive decision to take me back to the emergency room, presumably because he was tired of listening to me wail.  This meant canceling work for the both of us that day- a big deal as Patrick doesn’t get sick time- but I don’t recall feeling guilt for more than a few moments as I couldn’t focus on anything but the fire surrounding my foot.  Relief came in the same fashion as before- iv dilaudid.  As we prepared to head back home, they gave me one more dose for the road in the hopes I’d make it back to my oral pain medications in time before the iv wore off.  My surgeon texted as we were leaving the hospital and directed me to head straight to her hospital to be admitted; her plan was to start me on iv meds to get out me out of pain until the surgery the following morning, but I convinced her to let me go home and see how I fared.

I slept very little that night, which was fine as we had to be up and on the road to the hospital by 4:30 for check-in by 5:30.   I had taken my last dose

Three tiny incisions along the Achilles closed with dissolving sutures.
Three tiny incisions along the Achilles closed with dissolving sutures.

of pain medication at around 3am and didn’t bother to bring any more with me as I reasoned I’d be out cold by 7 anyway.  The pre-surgical prep went quickly, but I was in severe pain by the time a trio of anesthesiologists came in to announce that they would be performing a nerve block.  I couldn’t hold my leg still as it shook on its own, so they held me down as one doctor ran the ultrasound over my thigh and another injected the medication directly into a pair of nerves along my inner and outer thigh.  The second injection stung sharply and a nurse caught my hand mid-air as I inadvertently swatted at the needle as though I was a toddler getting my first shot.

Instantly the pain was gone.  I invited the anesthesiologist who wielded the needle to move in with us.  I described in enticing detail the lovely pine wood bunkbed he could share with Georgia and promised to buy him whatever toys he wanted.  The rest is fuzzy as the iv meds took over.  I vaguely recall greeting Dr. Workman in the operating room and asking everyone if they felt well-rested and ready to rock.  The anesthesiologist came in and I professed my undying love for him.  I only know this because Dr. Workman told me all about it many hours later.

After some confusion in recovery about whether or not I was to stay the night, I was wheeled into a double room with an elderly roommate who assured me she was just about to leave and then stayed most of the day.  My leg was numb, I was well-drugged, and the nurse handed me a menu with directions to order whatever I wanted as much as I wanted.  I felt the kind of happiness I imagine those last floating survivors of the sunken Titanic felt when that little boat of rescuers finally paddled up.  I was awash in joy and I ordered a five course meal with four desserts.  I was gorging myself on chocolate pudding when Dr. Workman came in with her assistant, commenting under her breath that she’d forgotten to put me on a calorie-restricted diet.  Her assistant held a sheet of paper with a new

My flat foot recovering in the hospital.
My flat foot recovering in the hospital.

prescription on it, a prescription to turn the six struts multiple times over two weeks.  Rather than hand the prescription over to me, however, Dr. Workman had him read each strut turn aloud and she systematically turned each one in ordered increments, going around and around my ankle, until the entire two weeks of repositioning was completed in fifteen minutes.  I ate my pudding the whole time, thankful for my numb limb.  When she had finished, my foot was flat.  It was done.  All I had left to do was heal.

I spent two nights in the hospital instead of one because the nerve block that wears off in 8 to 24 hours just didn’t.  I never got all the feeling back, but I did start feeling pain again the morning after my surgery.  Thankfully this was simply the initial swelling and surgical pain that follows any procedure; by the next morning I was off of the iv medication and back to oral meds at reasonable doses.  I could wiggle one toe and had some feeling in the top of my foot, though the rest of my foot was numb.  Good enough.  They sent me home.

The only thing left to do now is heal.


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The Claw- a device used for torture and changing out struts.

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.
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 was 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.

The Claw- a device used for torture and changing out struts.
The Claw- a device used for torture and changing out struts.

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 site 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

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

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.

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

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

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.

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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