Thursday, September 14, 2017

On My Bad Leg

When I was little, a neurologist told my parents that they should encourage me to be left-handed, because my right side - including my right hand - would be more affected by CP.

They tried. I resisted. I'd pick up a crayon with my right hand, they'd switch it to my left, and I'd quietly and unceremoniously slip it back into my right.

Eventually they gave up trying to change me according to a doctor's orders and just let me be who I am. As I grew older, it became clear that my hands were very minimally affected by my CP, if at all. Yet that doctor wasn't entirely wrong. My right side - specifically, my right leg - is significantly more affected than my left leg.

That difference has always been obvious, but post-SDR, it's even clearer. My left leg has been stronger from the start, quicker to build further strength, and easier to stretch. Visually, my left knee turns in less and the calf muscle is noticeably larger.

Oftentimes in PT, someone will notice one of these differences and comment. The words leave my mouth before I can stop them:
"My right side is my bad side." 
(Or, conversely, "My left side is my good side.")

I say these words, and yet I know deep down that they are not true. My body is not divided. It is not a split entity between "good" and "bad."

I'm not usually one to get caught up in semantics, but I am trying to change my language. I want to view my entire body - my entire self - as inherently good.

Sometimes, though...sometimes it's hard.

Yesterday, it was hard.

Yesterday, I had my first progress evaluation in PT.

Overall, it went really, really well. My progress over the course of the past two months has been awesome: my balance is better, my strength and endurance have increased significantly, and I am in much less pain as my body continues to heal.

And yet there was one part of the evaluation that felt like a punch to the gut. I've been working so hard on stretching my hamstrings, trying to avoid another surgery. If I can't get my range-of-motion to a certain degree by my follow-up appointment in November, I am probably going to need lengthening. It's a minimally invasive lengthening surgery called PERCS, and it's supposed to be much less traumatic than the tendon surgery I had when I was two. But there's no getting around the fact that it's another surgery. Another hospital stay. Another recovery. I really, really don't want to go through everything that entails if I can help it.

Over the past two months, I've gained significant range-of-motion in my hamstrings on my left leg. On my right leg? Not so much.

It was hard to watch my mom's face fall in disappointment as the PT read out that number...a number that still seems impossibly far away from where we need it to be. It was hard not to think of my right leg as my "bad leg" in that moment, because it causes me so much more frustration and worry and heartache compared to my left.

I wish I could say that those range-of-motion numbers don't matter. For me, they do. I want so badly for those numbers to go up so that I can spare myself from further pain and tears and anxiety. But I will say this: those numbers aren't everything. Those numbers don't define the worth of my body. They don't define me. They don't even define my right leg.

Righty, if you're listening? I appreciate you. I know we've been through a lot together, but I think you're pretty awesome for continuing to try, and for getting me where I need to be. And for the record? I don't think you're bad.

You're part of who I am, 
and no matter what happens, 
we're in this together. 

Saturday, September 9, 2017

SOS: When you're stuck on an island and bleeding profusely

It's 4 p.m. on Monday, the fourth of September, and I'm holding my mom's hand as we walk along the beach. The sky is peaceful, calm, and the tides have retreated, leaving behind a wide expanse of flat, wet sand that is scattered with rocks and shells. The stairs to my uncle's house are about fifty feet in front of us.

As we step, we are trying to be careful to avoid sharp rocks and shells, but it's a nearly impossible task.

"Don't worry," my mom says. "We are almost to the stairs!"

That's when she looks down at my feet and gasps.

"Blood," she says, and at the panic in her voice, I follow her gaze.

Blood. Everywhere. A seemingly endless stream of red stains the sand surrounding me. My left foot is so covered in blood that I can't identify the source.

My uncle, who is standing twenty feet in front of us, runs over and carries me to a rock in the middle of the beach. He sets me down, and runs toward the stairs to get his girlfriend to help.

"So much blood. So much blood. There's so much blood." My mom keeps repeating this, and there's an edge of hysteria to her voice that makes me wonder if she might pass out.

"It's okay, I'm okay, I'm okay," I say. I'm not quite sure if I'm talking to her or if I'm talking to myself. The beach starts to spin, and I close my eyes. I'm afraid to say that I'm dizzy, because I'm worried my mom might faint. But it's almost as if she knows, because she gets down behind me on the rock and opens her arms so I can lean back. I close my eyes.

When I open them, my uncle's girlfriend (we'll call her Karen) is running toward me with a dishtowel and a pair of kitchen scissors. My uncle trails behind her with a first aid kit.

Karen looks down at my foot, at the blood streaming steadily down the rock. "Oh my God," she says.

She thinks I might need stitches, but my aunt and uncle (who share the same blood clotting disorder that I inherited) think I can get by without them.

"Well..." she says. Her hands are covered with my blood, but her voice is suddenly bright - almost cheerful. "I could suture you up right here if you want! I have a suture kit right here!"

NOPE NOPE NOPE. She's a biochemical engineer, so she knows her science, but even if she was a doctor, I don't know if I would be brave enough to let someone give me stitches in the middle of the beach, especially since my feet are still a bit hypersensitive from SDR.

The sunset on the island :) I took this after dinner,
during the second rebandaging of my foot. 
As they rinse off my foot, it becomes clear that the source of the bleeding is a pretty deep gash on the top of my big toe. They bandage it up with gauze, wash off the bloodstained rock that served as my makeshift exam table and I get to my feet to make the trek up the stairs.

("I'm so impressed you didn't even shed a tear!" someone says. "If it were me I think I'd be sobbing."

Well, after everything's she's been through lately, this is nothing, my mom says. #truth...CP has steeled me!)

As I step, my foot continues to drip blood, so they have to rebandage everything at the top of the stairs. I'm told not to look because there's still a lot of blood, so someone drapes a beach towel over my head. ;)

Later, I join the family for dinner and then we have to rebandage everything AGAIN...and then at some point on the way home, we realized that it was still bleeding significantly. My aunt (a nurse) met us at a CVS and applied some steri-strips and some clotting medicine, using a flashlight to see in the dark as I propped my foot up on the dashboard of the car.

My sad toe :( This is from today, 5 days later.
I took a bandaged pic because I don't want to traumatize anyone ;)
On Tuesday afternoon (24 hours later), I could walk on it, and it didn't hurt much, but every time I stepped, the cut began to bleed we went to a walk-in clinic. The doctor there (who was the same doctor who saw me at the urgent care center when I broke my femur in 2007!) said that I probably should have gotten stitches, but it'll heal up on its own with the steri-strips to hold everything together.

I was really discouraged by this injury because I was afraid it would interfere with all of the progress I've been working so hard to achieve...but luckily, it hasn't slowed me down much! For some reason (maybe it's an SDR thing or a CP thing) it barely hurts at all, and I only missed one day of PT (Tuesday - the day we went to the walk-in clinic). I stopped doing the treadmill for a couple of days, but otherwise, I've been continuing as usual. Today I met with my personal trainer and she was so happy with the strength I've gained in the past two weeks. My squats are looking better, and my core is engaging more as my back heals. And the BEST part? When I was using the abductor strengthening machine, I can now press my knees completely against the pad. When that happened, we didn't say anything...we just stared at my knees in silent reverence until the last repetition, when she pointed and said, "Do you SEE that??" :,)

I wish I could go back in time to five days ago, to the moment when I was curled up bleeding on that rock in the middle of the beach, whispering
I'm okay.
I'm okay.
I'm okay.

I wish I could go back to that moment and say
You're okay.
You're okay.
You're okay.
You can do this
and you will.

Tuesday, August 29, 2017

7 Weeks Post-SDR: ELATION OVER STAIRS & Progress Through Struggles

There are no words that could come close to capturing the feeling you get when you finally, finally, finally accomplish something that you've been working on for as long as you can remember.

A few days ago, I stood at the bottom of the staircase, took a deep breath, and walked up. With no hands. Alternating steps. 

When I got to the top, I turned around. Took another deep breath. And walked down the same way. 

Pre-SDR, if I concentrated hard, I could sometimes do one step up without a railing, and one step down. They were shaky steps, often thwarted by thinking too hard or not thinking hard enough. Sometimes I'd lead with one foot, and the other foot wouldn't follow quickly enough, and I'd fall. This happened often enough that independently navigating curbs has never been an option for me.

But now? Maybe when I come across a curb in public, I won't have to feel the pounding of my heart in my chest. Maybe I won't have to worry about whether I'm safe, because I'll know that I am. This staircase is so much more than a staircase for me. It's independence, and safety, and freedom.

It was never just a staircase. 

These past seven weeks have been incredibly difficult at times. At times I've wanted to post here, but I just couldn't, because I didn't know how to put words to my feelings...didn't want to put words to my feelings, because I was afraid they would hurt all the more if I gave them power by typing them onto a page. I was frustrated that my legs weren't working in a way that was familiar to me, afraid of dealing with the possibility of failing myself and my family, and feeling crushed under the pressure of it all.

But things are looking up. The pace of my day-to-day life has picked up again, with an online graduate school program and tutoring in the evenings and an intense regimen of PT. I do four days per week of formal physical therapy that lasts for about an hour and twenty minutes, one day per week of personal training, and I usually go swimming for at least one day as well. On top of that, I do stretching and exercising at home. I just finished 25 minutes on the treadmill (definitely had to pep-talk myself through those last five minutes!!!), and after this I'm going to go stretch my hamstrings. (I think I'm developing an addiction to hamstring stretching!!! More on that later) It's a lot, for sure, but I'm motivated and encouraged by my progress. :)

My next goal is to work on building my confidence with curbs out in public. Physically, they are so much easier than before surgery, but my mind still remembers how difficult they were, and I've fallen flat on my face so many times that it's a difficult fear to transcend. A lot of this recovery experience feels like that: there's a disconnect between how my legs feel now, and how my body remembers them.

That's it for now, but I'd like to write here more often. It's cathartic to share my experiences with you guys, and my hope is that maybe someday it will help somebody maybe I'll be back here tomorrow with some more to share. :) Thanks for stopping by!

Tuesday, August 15, 2017

Day 3 Post-SDR: The Hardest Monday Of My Life (ft. vomit, unwelcome roommates of multiple species, & lots and lots of tears)

I'm not a morning person and I'm not a Monday person, so I think it's fair to say I'm biased against Monday mornings to begin with, but the particular one that I am about to relay to you was the Monday-est Monday morning I've ever had. 

Let me paint a picture for you: it's 7am, 3 hours after the pain management doctor was bent over my epidural pump and apologizing because I'm not able to receive the blood-thinning "better" pain medications.

I am simultaneously throwing up, trying to breathe, and trying NOT to breathe so I don't aspirate into my lungs.

Panic washes over me as I realize that somehow, I'm unable to breathe through my nose. My body feels as if it's warring with itself, and I'm stuck in the middle of it all, somehow separate and yet unable to escape. As my stomach reflexively retches, forcing air out, my lungs reflexively fight to get air in.

My mom is trying to help me sit up. With her other hand she presses the call button over and over and over and over again. A nurse answers through the speaker on the remote, asking if we are okay. My mom doesn't need to reply because whatever horrific sound effects the poor nurse hears on her end sends them running to my room. Later, I wondered if the entire nurse's station heard me throwing up, but in that moment, I couldn't have cared less.

When my stomach has finally calmed itself down (with the help of some anti-nausea meds), those nurses leave.

Someone else enters.

This is the part of the story where my mom completely loses it. 

"Did you see that??!" she asks, staring at the door to my hospital room.

"See what?" I reply, still preoccupied by the pink basin in my lap.

"SOMETHING JUST CRAWLED UNDER THE DOOR!" she says. I can tell she's seriously considering leaping onto a chair.

"Like a bug, or...?"

"YES, it was HUGE...really really huge and I don't know where it went but - OH THERE IT IS, I SEE IT, IT'S DEFINITELY A COCKROACH AND IT'S GOING INTO THE BATHROOM, IT'S -" (at this moment, she runs over to the bathroom door and slams it shut, which we both know will do nothing because Mr. Roach is the perfect size between terrifyingly huge and yet terrifyingly small enough to fit under the gap beneath the door.)

She turns to me and exhales: "OKAY...okay. Okay. It's in the bathroom. Do you think we can use the call button for this kind of emergency too???" (contemplative pause) "....You are so lucky to be in that bed right now."

And then we just start to laugh. Because after the kind of morning we'd just had - 4am meetings with the pain management team followed by I-can't-breathe throwing up - a cockroach as a roommate is just about the last thing we needed.

Not too long after, though, Mr. Roach decides on his own to leave the bathroom and crawl out of the room. Miracles do happen, people. #SDRChangesLives but #SoDoCockroachesFinallyLeavingYourRoom.


After that fiasco, the neuro team came in to remove my catheters. I was pretty worried about having no more epidural to control my pain, especially considering how much pain I had experienced earlier in the morning, but they assured me that the oral pain medications would be just as effective, and they were right. :)

I got extra pain meds then, too, because my next visitor was my PT. Honestly, I don't remember much at all about her visit, and maybe it's because of those pain meds. I remember that the room spun when I sat up on the edge of the bed. She had her arms around me to support my back as I sat, but it definitely wasn't the most comfortable experience. Then she had me wrap my arms around her shoulders as she pulled me to standing. My legs felt like jelly, completely incapable of supporting my weight, and as she helped me take a few shuffling steps toward my wheelchair, I was struck by the very strange sensation that my legs were not my own. In some ways, they were heavy, and still pretty numb from the residual epidural medications in my system, but at the same time, they no longer resisted me. They didn't fight back anymore.

After I was settled in my wheelchair, we went for a quick trip around the hospital so that I could get used to sitting up for longer, and then it was back to bed. At this point, I really wanted to get cleaned up and change out of my hospital gown into some Real Clothes (and now that my catheters were out, I was officially allowed to!).

My amazing and incredibly resourceful mom had a plan to accomplish this. She stopped by the nurses station and asked for several of the largest diapers they had on hand. They got a good laugh out of this, and were particularly intrigued when she explained that she needed those diapers in order to give me a "shower." (I wouldn't be allowed a true shower until Day 10 post-op! *shudder*)

Back in my room, she positioned the diapers under my head and used them to absorb water as she and my nurse shampooed and conditioned my hair. They sponge-bathed the rest of me and then I changed into my SDR t-shirt and pajama shorts, and my mom did my hair (side ponytail, 80's style! Not exactly my favorite but hey, my options were limited, and Laura Ingalls Braids were completely out of the question!). It wasn't the most luxurious shower I've ever had, but I was in no position to be picky, and it felt amazing to be clean!

By now, it was Monday afternoon, so I believed that the Monday morning horrors were finally behind me.

I was mistaken. Never underestimate the mood-wrecking power of a single sentence spoken over a hospital intercom.

"This is a reminder that all fire alarms are going to be undergoing testing in the next hour." 

I began to sob. 

Yes, I am twenty-three years old and I am crying over a fire alarm. Before you judge, let me explain.

As a person with CP, fire alarms are already a source of immeasurable anxiety for me. If you're reading this and you also have CP, you'll know what I mean. If you're reading this and you don't have CP, then I ask you to imagine what it's like for you when a fire alarm goes off. You probably startle, and your body tenses up for a moment, and then you get on with your day. But my brain has a hard time turning off that reflex; I startle hard, and for at least several minutes afterward, my legs feel "stuck," and painfully stiff.

And in the first few days after SDR, my already-heightened startle reflex was more powerful than ever before. A knock on the door, a ringing cell phone, and even an unexpected light touch on my arm or leg produced waves of excruciating spasms that arched my back and rocked my body. These spasms were so intense, so sudden and unpleasant that my mom referred to them as earthquakes.

I already feared unannounced whispers and taps on the shoulder, having experienced the awful pain of the earthquakes they created. But as I lay in that bed, white-knuckled hands death-gripping the bedrails, I imagined the kind of torture that a fire alarm might induce.

I could not stop the tears. Could hardly form a sentence. Was terrified of the pain that might come for me just minutes before I was expected to get out of bed for my next PT session.

But my amazing nurse came in to reassure me that the alarm would be quiet. I wouldn't even be able to hear it from my room, she said.

So there you go. Lesson of the Day: Don't Cry Over False Fire Alarms. I wiped my eyes, took a deep breath, and repeated four words in my head over and over again. You can do this. You can do this. You can do this. You can do this. 

When my PT arrived a few minutes later to help me out of bed and bring me to the PT gym, I think it was still pretty obvious by my reddened eyes that I had fallen to pieces...but if she noticed, she was too polite to say so.

At PT, we started with simple exercises on the table, like bridges and side leg lifts...except they weren't so simple anymore! I couldn't do a bridge at all, and my side leg lifts consisted of the PT pretty much lifting up my leg for me! It was kind of a strange feeling to struggle so much with exercises that have been pretty "easy" for me my whole life, and to realize that so much of my "strength" was actually spasticity.

And then we did sit-to-stands. They were definitely painful on my back (a sharp, burning soreness), and yet I was amazed at how much easier it was to put weight through my legs. Pre-SDR, I could feel my knees resist me whenever I tried to straighten them, as if tight elastic bands were attached to my muscles, trying to force them bent again. Now, I was able to straighten them with ease, and not only would they extend further than before, but they'd stay that way.

As the "grand finale" of my PT session, I did a few laps around the gym using a walker. It wasn't the most graceful walking I've ever done, but the steps felt completely different than any I'd ever taken before. My legs still felt "borrowed," as if they didn't quite belong to me yet...but my steps felt so light! I have a video of my walking on my phone, and I can hear the tears in my mom's voice as she notices my straight knees. I think it would have been a happy tears moment for me, too, if I hadn't been concentrating so hard! :)

In the same PT session, I saw the family that had stopped by my room on Sunday while I was was nice to meet them now that I was actually conscious (and to meet their little girl, too! She gave me a big smile and watched me with wide, curious eyes!).

Later that evening, when I was back in my room, my neurosurgeon came by to check on me. He was almost giddy over the range-of-motion in my ankles, and per my mom's request, I showed him and his fellow a few seconds of the clip of me walking in PT. He was really happy with that - and with my SDR t-shirt. ;)

Then we had to switch rooms. The hospital room I'd been given was actually meant for seizure monitoring, and another patient had come in who needed it. It was great for those first few days post-surgery, because it was private and the shades could be pulled down to turn the room *completely* dark, even in broad it was amazing for sleeping! But now that I was starting to feel better, I actually didn't mind the room switch.

Except that as they wheeled my bed into my new room, I heard and smelled my roommates before I saw them.

My new room! Here's the view from my bed.
They were eating chicken tenders. Chicken. Tenders. You know, the very same food that I had eaten for brunch a couple days before, and the mere thought of it made me feel sick to my stomach. I glanced toward them, trying to force a smile and a wave for the sake of politeness. A little girl was sitting in the hospital bed with her mom, watching Despicable Me on volume level 106. The sheer amount of food on their trays would have been impressive if it hadn't made me feel so ill...mountains of chicken tenders, French fries, and ketchup. The room smelled like a McDonald's, and the mom was one of those Very Loud Chewers, so it was impossible for me to forget what they were eating.

It also turns out that her mom was a Very Loud Laugher. And a Very Loud Talker. A Very Loud Person. And every time she'd laugh or shout or drop something on the floor, the spasms in my back would return with a vengeance.

Very Loud Mom and her daughter were supposed to be discharged hours prior, but according to the nurses, they were taking their time leaving. My mom and I listened to them read over the discharge paperwork, and they were laughing about how they could just pretend that they had no one to pick them up and then they could stay here for as long as they wanted. The horror! Given the choice between sleeping in the hallway or staying in the room with spasm-inducing Very Loud Mom and her heaping plates of nauseating fried food, I'd choose the hallway ten times over.
The puzzle when it was all finished! No missing pieces. :,)

Once again, though...miracles do happen. They actually did leave, and a volunteer guy came by to give me a puzzle to work on. I LOVE puzzles...I thanked him profusely and told him he made my day. He said I made his too. It was a Hallmark Moment, you guys. :,)

Our new roommates arrived in the middle of the night...a mom, a dad, and twin newborn boys. I'll save that story for my last hospital stay post!

So there's Monday: cockroaches and vomiting and alarm tears and happy tears and chicken-tender-eating roommates! 

Thank you to all of you who have reached out with words of encouragement and support, and thank you to all who continue to follow my journey! For those who have reached out with concerns, I want to assure you that my last post was written in good spirits...I promise. I mean everything I said: I'm not planning to stop writing anytime soon, and I'm going to continue relaying my experiences with honesty and openness. This post just took a lot longer than usual to write because I needed to do this Monday justice!

I'm thinking that my next post will be another "current day" update, so stay tuned for that very soon! But I definitely have a lot more to write about the rest of my hospital stay, PT sessions in St. Louis, and the (crazy!) plane ride home.

Until next time! xo

Thursday, August 3, 2017

Dragons, New Legs, and Complicated Feelings: A Letter to YOU

Before I continue with my hospital stay posts, I want to talk to you about something.

I want to talk to you about Complicated Feelings. My purpose in writing this blog is to help you feel less help you feel uplifted and understood and loved. I never want you to come to my blog and leave feeling alienated or less than or hurt.

When I write about my SDR experiences, I'm writing from a perspective that is deeply personal to me. I know that others with CP don't necessarily feel the same way about spasticity or cerebral palsy, and that's 100% okay. For me, spasticity did feel like a dragon, so Dr. Park's metaphor (i.e., SDR = slaying a dragon) resonates. For me, spasticity was wholly negative and separate from CP. It slowed me down and caused me a great deal of pain. And now that my spasticity is gone?? My body feels completely different, and it's a disorienting and extremely difficult yet extremely joyful experience for me...something that I need to write about. I do feel free - as if a literal weight has been lifted, not from my shoulders but from my legs.

You might feel differently. Maybe for you, spasticity is simply a part of having CP. Maybe for you, it doesn't cause suffering. Maybe for you, spasticity represents security, something you feel you need to get around. Maybe for you, it's not a dragon. I acknowledge you. I see you. I want you know that even though I write from my own perspective about my "new legs" and my new sense of freedom, I am not implying that you are not free.

For me, so far, SDR has been the right decision. For you (if you are reading this as another person with CP), it might not be. And that's okay.

And even though I've had SDR, I still have CP. That's not something I'd ever want to take away. As I've noted on this blog in the past, CP is a part of who I am, and I have grown to love that about myself. My goal in having this surgery is simply to move have less improve physically so that I can live a healthier life going forward.

I will continue to document my experiences honestly, sharing my triumphs and hardships as they come - I feel like I owe that to you, and I owe that to myself, too. But I also want you to know that I am here to talk if you ever come away from my blog feeling worse than you did when you arrived. I don't hear from the vast majority of my readers on a regular basis, so I don't know how you're feeling. I can only hope and pray that my blog is a source of comfort and solidarity for you. But if it isn't? Please...send me an email, or write me a comment.

Yes, I do feel as though my dragon has been slayed. I do feel freer, as if I have new legs. I am continuing to work hard in PT, and I am excited to make progress. For me, SDR seems like it was the right choice...the right path for me as I strive to be the healthiest, happiest version of myself that I can be. But for you? Maybe it's not. Maybe you embrace your spasticity in the same way that you embrace CP. And that's awesome.

Whichever path you choose...whether or not spasticity is a dragon for you, whether or not SDR represents freedom for you, just know that you are enough. We are enough. And we are in this together. <3

Monday, July 31, 2017

Life on the 12th Floor: Part I. (AKA: Alarms that Never. Stop. Beeping.)

It's a bit difficult to parse out the days, as they all blend together, but I remember that when I woke up early in the morning on July 8th, the day after my SDR, I was still feeling good. I had some more itching on my face and arms, which they controlled with Benadryl, but no nausea (once again, THANK YOU DR. ROBBINS!!!) and just a little soreness in my back. I couldn't really feel anything from the waist down...I could wiggle my toes (really, really well, in fact), but my legs felt numb and heavy, almost like they weren't entirely part of my body.

For brunch, I ordered Frosted Flakes, strawberry ice cream (because I can), and chicken tenders (retrospectively, this makes me feel ill....chicken tenders for brunch?! No no no no). I can't really remember much else about that day, but I think that's because I spent most of it sleeping.

EVIL ALARM...or maybe this is my epidural pump.
I'm not sure. But the evil alarm is in this photo somewhere.
Except when the machines started beeping or the nurses woke me to check my vitals. Both scenarios seemed to happen 1,583 times a day. One of my issues was that my breathing was shallow, and this triggered the respiration alarm
*c o n s t a n t l y.* I remember waking up and asking my mom if we could toss that monitor out the window and watch its descent from the twelfth floor, and she wholeheartedly agreed.

I begged my nurse to fix it or turn it off or ANYTHING. (Breathing is overrated) One of my first nurses was really good at pressing buttons on those monitors, but she refused to answer any of our questions. She kind of reminded me of a personified brick wall, because she was incredibly unhelpful when it came to fixing that respiration alarm, and when my mom asked her what she was putting through my IV, Personified Brick Wall stared at my mom in silence and left the room. Which...I dunno, doesn't that kind of sound like the substance of a horror movie? Evil nurse puts unknown chemical into your veins and upon questioning, stares through you and leaves the room. 

My next nurse was WAY better than PBW. She was amazing, in fact. She moved a lead on my chest so that the respiration monitor wouldn't freak out at me as much, and she was much faster to come into the room to turn it off when it did start sounding the alarm.

And then...circa 2 am Sunday morning, the pain hit. Hard. I think the general anesthesia was out of my system at this point, and my back knew it. At its worst, my pain had climbed to an 8 out of 10. My awesome nurse paged the pain management team and told the doctor that it was a "ten." ("I added a couple points so he'd move quickly," she confided conspiratorially.)

There was a giant digital clock on the wall that displayed the hours, minutes, and seconds as they passed. Those illuminated red numbers taunted me. I remember watching the seconds inch by and wondering when my pain would end. If it would end. 2:13:36. 2:13:37. 2:13:38.

As my pain increased, so did my nausea. When the pain doctor finally entered my room, I was bent over a pink basin.

He looked at the dosage of medication that I was receiving through my epidural and realized that it was too low, a child's dose, so he increased that. And then he pressed some buttons on the epidural pump and gave me a bolus of medicine.

"We watched your face relax instantly and we knew that it had worked," my mom said later. I pushed that basin away and fell asleep.

When I woke up later Sunday morning, my pain was about a 3! I must have slept most of that day, too, because I remember some other details, but they're all boring and related to sleeping (like: "UGH. The nurse is coming in to roll me again. Now I have to sleep on my left side, which is my least favorite side for sleeping!" Yeah. I told you they were boring details.)

The next (interesting) part of Sunday that I remember is waking up later in the evening and realizing that I'd missed my first visitors. I was really sad about that and kind of frustrated that my mom didn't wake me for them. :( I'd been in contact with another SDR family who was coming back for their daughter's one year follow-up appointment, and the little girl wasn't allowed on the floor (due to germ precautions), but her mom and grandma had come to see me and they dropped off a beautiful goodie basket...a stuffed elephant, a coloring book, some Better Cheddars (like Cheezits but...BETTER), heat packs, and a fuse-bead Ariel that the little girl had made me. Once again, we were floored by the kindness that found us in St. Louis.

"Don't worry," my mom had told me."We'll see them again." And we did. :) I'll share about that later, but Monday was such a crazy day that it deserves its own post, so I'm going to leave off here at Sunday night. Stay tuned for the rest of my hospital stay, which features less sleeping, lots and lots of tears (happy AND sad in the same day!), my first time out of bed to try out my "new legs," a room change, and a whole bunch of PT sessions!

Saturday, July 29, 2017

3 Weeks Post-Op Update!

I'm still working on my hospital stay posts, but I had so many people ask me yesterday for an update on my recovery that I figured you guys might be wondering too.

Week two was rough.

The numbness in my legs started slowly wearing off starting the night I was discharged from the hospital (Wednesday, day 5 post-SDR). First, it was really just my feet that started regaining sensation. They were overly sensitive and really, really cold. I was wearing socks and slippers at the same time, and even that didn't seem to warm them up at all. Then I started getting tingles in my legs...nothing excruciating, but it felt like static electricity all from my hips to my calves.

By Saturday night (day 8 post-SDR), my legs felt achy, but I didn't think much of it. I thought my muscles were just sore because I'd never used them without spasticity before.

I thought wrong. Saturday night was a warning, a sign of the misery that awaited me. As the days progressed, the achiness intensified. By Monday night, the achiness had turned into burning, shooting pain, and the tingling was no longer the benign static electricity sensation. Soft blankets felt scratchy and itchy against my legs, and my knees hurt when they touched each other.

I was going to bed at 8 pm and watching the hours creep by until the sun started rising. And nothing helped. I tried Valium, magnesium (the neurosurgeon's suggestion), sleeping aids. I was more exhausted than I'd ever been in my entire life, and yet sleep refused to come for me.

On Tuesday afternoon, I sent off an email to the PT who assists Dr. Park and helps with administrative tasks. She assured me that these nerve pain issues were normal (and older children and adults are more prone to them) and she forwarded my email to the physician assistant.

Tuesday night, the tingling, itchiness, and nerve pain were worse still, and my mom had timed my muscle spasms and said they were coming every 30 seconds or so. ("I'd watch you start to drift off to sleep," she said, "and then your leg would spasm and jolt you awake again!") Not being able to sleep was the most frustrating aspect of this whole situation, but these issues were also plaguing me during the day. My legs felt like they were getting a low-grade electrical shock, and on top of that, it felt as if I had a sunburn (this "sunburn" was worst on the bottom of my heels). Even wearing a soft pair of leggings was uncomfortable.

On Thursday night, we called the St. Louis office and the PA wrote me a prescription for a drug called gabapentin, which is an antiseizure med that also helps with nerve pain. I didn't want to take it because some of the side effects are scary, but she assured me that it's low-dose and I'd only need it for a short time.

Out of sheer desperation, I took it. And it WORKED.

I took it about two and a half hours before bed (it takes some time to work), and the first few nights of taking it, I still had some tingling, muscle spasms, and hypersensitivity in my legs and feet, but my symptoms were diminished enough that I was able to fall asleep.

Now, my legs feel pretty much normal again! I still get some tingling and itchiness when I put pressure on my legs, and my feet are still hypersensitive (and sometimes it feels like they have pins and needles), but these issues don't interfere with my life at all. I'm not thrilled about having to take the gabapentin, but I'm beyond relieved that it's working for me, and I'm hoping that I'll be able to stop taking it in the next couple of weeks, once my nerves have calmed down. And no side effects yet!

Physically, I've been working hard in PT (an hour a day 4 times per week, and then I do exercises and stretches at home as well). I'm amazed at just how weak my muscles are - exercises that I've done "well" my entire life now make my legs tremble! For PT, I'll sit on the edge of a table or chair with my legs bent, and then straighten one knee and hold it there for ten seconds, and my leg will shake uncontrollably after a few repetitions. It's kind of frustrating, because in my head, it should be easy, and yet it isn't. It's so, so hard.

At the same time, though, I am in awe over how easy it is to move! My legs feel so free and light without spasticity. It's as if I've gone from having tight elastic bands pulling on my muscles and heavy chains weighing down my legs to having nothing at all. Walking up stairs feels like floating, and straightening my knees is so simple now!

I'm now walking independently all through the house. Outside of the house, I can walk for short distances on my own, but I usually hold someone's hand for balance because my legs still give out on me sometimes. According to my PTs, it takes about six weeks to build muscle, so I guess I have to be patient as I wait for my muscles to come through for me. Every day, though, moving feels walking improves overnight, because my brain is constantly working on figuring out new pathways for movement now that it can't rely on spasticity.

For the most part, the feeling has returned in my legs, although I still have a numb area on my left leg from the top of my thigh to just above the knee. My back is still sore, too, and it's tricky for me to bend over, but that's been improving gradually as well. My scar is 3 and a half inches - a bit longer than I expected, but so worth it. :) I'm in awe over my new legs.

One intriguing "side effect" of SDR that I've noticed is that the discrepancy between my two legs seems much more pronounced without spasticity. My right leg has always been more affected than my left, but I think spasticity evened out some of the difference because my more spastic right leg was able to rely on that artificial strength, and my less affected left leg was hindered by spasticity. Now that the spasticity is gone, my right leg is noticeably weaker throughout most of the exercises (except some of the hip exercises, because my left side is still not 100% after my broken femur/pin removal)...and my left leg is significantly more flexible.

I'll be back soon to write more. Thank you all so much for your encouragement and support! Week three has been such an improvement over week two, and here's hoping that the upward trend continues. :)