Thursday, July 21, 2016

The Adventures of Post-Op:
THE MOMENT
YOU CAN'T BELIEVE IS REAL

I can't even write this post without crying.

Last week
for the first time in eight and half years
when I stood up
it didn't hurt
at all.

I hadn't remembered what that felt like, to not feel pain.
It is completely beyond words.
I wanted to stand there forever.
My mom came into the room - What are you doing? she said.
It doesn't hurt, I said. It doesn't hurt. 
And I broke.

She watched for a moment as I stood there
and then she broke too.
"Can I hug you....can I hug you..." she said -
and we stood there, sobbing, broken, holding each other together

have you ever been so happy that you break inside
because that's the only way I can think of to describe it
splintering rays of sunshine rising in my chest and spreading, growing -
chills and warmth coexisting.

I just couldn't believe - still can't believe - that people can feel LIKE THIS.
even my "good days," the days when the pain seemed to subside, 
were nothing at all compared to THIS.

It's a moment I'll remember for the rest of my life, a moment I relive and remember every single time I stand and it doesn't hurt. 

I'd be lying if I said that my recovery has been easy, and it's very much still a work in progress. I still have challenges to contend with, pain in other contexts, spasms, weakness....it's hard, for sure. But this, after eight and a half years of constant pain...this is a gift I hardly dared to hope for,
and I am so, so, so grateful.

I still can't believe this is real.
For the first time in eight and a half years
it doesn't hurt at all. 



{links}

Monday, July 18, 2016

PART 2: The Adventures of Post-Op (Lucky Charms, My Stomach's Rebellion, and Nurses From Heaven Above)

By the time the sun came up on Wednesday morning, I had only gotten about 2 hours of sleep, but I opened my eyes and reveled in the beautiful fact that I finally had a comfortable IV, even if the nurse supervisor had to cut off my hospital bracelet and allergy band to place it, much to the horror of one of the new nurses on duty. ("What happened to your bracelets?!" she had asked, and it sounded like an accusation. I stared at my bare wrist and admitted, I don't remember, which sounds suspicious, but I honestly didn't...and then in a flash of recognition, I recalled the IV fiasco of the previous night and I gave her a one-sentence Sparknotes summary, to which she didn't say anything...she just sprinted out of the room and returned a minute later with a freshly-printed bracelet.).

My surgeon stopped by my room to say hello and to reassure me that he was "not surprised that I had a tough night" - but he reminded me  again that all three pins were gone - and that was definitely a reason to smile.

As a result of shift changes early that morning, Benny had been replaced with a new nurse (let's call her Jane because I'm terribly unoriginal like that)...and she was awesome.

"What would you like for breakfast?" she asked, impressively chipper for the ungodly hour that it was.

Nothing!! I was still having trouble keeping down liquids (TMI? sorry) and not far from my mind was the memory of my (well-intentioned) dad forcing me to eat Cheerios during my last hospital stay while I pleaded with him, and the ending to that story was not ideal (read: I vomited cereal all over his shirt.).

As though she had read my mind, though, Jane said, smiling, "Nobody is going to force you to eat. How about I just get you something and you can decide once it's in front of you." I nodded and she recited a list of cereals, from which I mentally crossed off Cheerios (never again will I trust you, multigrain O's).

"Lucky Charms sounds like it could be fun," I said with cautious optimism, and she laughed, returning a few minutes later with the cereal, a plastic sealed pouch of orange juice (?), and a container of blueberry yogurt.

I didn't eat much - maybe half the yogurt and a few bites of Lucky Charms - but I was able to keep it down, which was already an improvement from last time. I should have kept my guard up though, because my stomach was less-than-happy with the oral pain meds that followed my breakfast, and a wave of nausea hit me.

They switched me back to IV pain meds and gave me a dose of Valium for the spasms, which made me sleep for several hours. (I don't know what happened during this time except that my mom was busy getting addicted to my Kindle, onto which I'd loaded All The Light We Cannot See and I told her to read and be amazed. She was - and we've since gotten her a Kindle for her birthday in August, which is hidden up in my room! ;))

The next significant event I can recall is the PT stopping by. When I was a little kid, I used to receive physical therapy through the children's hospital, and she actually knew my therapist, so we connected immediately. :) She helped me stand for the first time and the dizziness that came over me was a little overwhelming, but we worked through it...and then she asked me if I wanted to leave my hospital room. YES.

She handed me a walker and we walked the ten feet to the hospital lobby. Then she pointed to a spot about fifty feet away, in the hospital playroom. "Do you think you could make it to that chair?"

It's crazy how fifty feet can become your mountain, but when you're fighting dizziness every few steps along with your "normal" CP spasticity and you've got one leg that isn't entirely sure it's ready to cooperate, fifty feet isn't so easy. When I finally made it to the chair and then back to my room, I was sososo tired and the PT thought it'd be best if I had a break for a nap before we tried stairs.

I feel bad about this part because the first time the PT came back for me, I had apparently succumbed to Valium-induced sleep...and when she came back again a few hours later, this time I was sick to my stomach. I just couldn't pull myself together!!

THESE PEOPLE. I don't know if they eat rainbows for breakfast or what, but she just smiled a sympathetic smile and reassured me that it was completely fine that she just came back twice and neither time I was ready...You take your time, she said, and I'm sorry you're not feeling good.

A couple hours later (it was like 6:30 pm maybe?), another PT arrived, and I think even if I were still vomiting I would have crawled out of bed and insisted that I was ready, because I didn't have it in my heart to turn down these smiling angel-people a third time. As luck would have it, though, I wasn't vomiting (which, in case you were wondering, is a huge plus). My mom had brought my crutches from home along, and I loved the familiarity of them compared to the walker. Moving with crutches came easier to me, and their rhythm was second-nature even though it had been years since I'd last used them. This time, the PT took me to the stairwell and we practiced going up and down steps - just the first two, because there are two steps to get into my house, so that's all I needed to master for the time being. (There's an entire staircase to get up to my bedroom, but apparently these people only cared that I didn't have to sleep outside, which was good enough for me, too.)

When I was halfway up the first step, I turned around and saw my dad and my brother staring at me....and okay, it sounds bad, but I really didn't want a surprise audience at this point in my life, when I was praying not to fall on the stairs and focusing on keeping my IV from tangling on my crutch handle. Just knowing they were staring made me tense up and the whole task became that much more difficult. "Please please please don't watch me," I said. "It's so much harder when I know you're watching." 

They waited in my room for me to finish, and when I came back to rest after successfully managing the stairs, I was given more oral pain medication and I felt sick to my stomach AGAIN. (Are you getting sick of hearing this yet?) 

Meanwhile, my dad wanted to go home. "Alright," he said, "Can we be ready in thirty minutes?" 

I wanted to go home really badly, but I kind of panicked at that timeframe...having just gotten back from the stairs, I was exhausted beyond words, and the oral pain meds and residual anesthesia in my system were wreaking havoc on my body at that particular moment in time. 

"It's going to take longer than that to get her cleared for discharge," my mom said, "and I don't think they'd let her go home like this..." 

They deliberated for a few minutes, and he reluctantly agreed to take my brother and leave my mom and me at the hospital. 

Soon after they left, the nausea hit me with an intensity I don't think I've ever encountered before in all my life. I was bent double over a bucket and my stomach was trying desperately to reject everything I had given it - which at this point, was a sip of water and a pain pill, so there wasn't much to return to sender. That didn't stop my stomach from trying though.

It also turns out that my five-year-old roommate had selected this exact block of time to host a loud and lively family reunion. They didn't speak English, and my Spanish is rusty, so I can't say for sure if they were talking about me, but several of the guests were watching me with intense, unwavering interest as I retched over my bucket, and I really would have preferred if they didn't, because it wasn't exactly a shining moment for me. As they partied and sang and danced in wild circles around the room, they shouted the same word continuously: "Mañana, mañana, mañana!" 

My mom (who is beyond amazing and was by my side through everything) held my hair back for me and mused, "What does mañana mean?"

"Tomorrow," I breathed, pausing in between the retching to take a gulp of air, and we both started laughing at the utter ridiculousness of the situation we had managed to find ourselves in...me, doubled over a pink plastic bucket, vomiting water and stomach acid as the entire extended family of my roommate danced around our beds shouting joyfully about TOMORROW TOMORROW TOMORROW, and meanwhile we were just hoping to make it through the next two and a half minutes. 

In the midst of all this, a nurse poked her head into the room (I discovered later that she was evaluating me for the possibility of discharge), lingered in the doorway for .3 seconds as I was bent over the bucket, and dashed any hope I had of going home that night. 

I was in this state for more than an hour - an experience I hope to never repeat again because it was its own special form of torture - when my mom took a moment's break from holding back my hair to go see if there was anything the nurses could do to improve my situation. Jane (the same amazing nurse from the morning shift) came into my room and put something in my IV to stop the vomiting (Thank You Lord) and then gave me Benadryl for the nausea (which surprised me - I didn't realize that nausea and vomiting needed to be controlled separately). She also apparently put an immediate end to the raucous party being thrown by my roommate's family, but I wouldn't have cared either way because the Benadryl knocked me out completely. 

(side note: It occurred to me later that if I were to remove all the medical-y details, an unsuspecting soul might expect I was recounting a night full of bad decisions on a college campus, complete with the roommate's loud party, the blackout, and the hangover. ;) I was never much of a partier in college though!)

Cold. I woke up in the darkness to an icy feeling spreading throughout my bed, and it dawned on me gradually and then all at once. I pressed the call button for a nurse and explained in shivering whispers that the ice pack on my leg had exploded. She patiently brushed off my repeated apologies and apologized to ME as she changed the sheets on my bed. (I'm convinced these nurses are from Heaven Above.)

In the morning, I made friends with a few more nurses (seriously...they were all so friendly!) and then, breakfast revealed the most revolting plate of scrambled "eggs" I've ever seen, if you could even call them eggs. They smelled like sulfur and tasted similar to what I imagine burnt rubber to be like, and they threatened to come back up, although not with the same urgency as the night before. I still didn't feel like eating or drinking (but they had been running me on IV fluids throughout the night to compensate for my hour-long date with the bucket, so that could be part of it) and my stomach was SO sore from its repeated attempts to reject its contents that it felt like I'd done 100 sit-ups. My amazing mom went to the cafe downstairs and got me a crusty baguette and some butter, which was incredible...I had a few bites and it actually seemed like it was going to stay put!! 

After a couple of hours, it became clear that today was going to be a much better day than the one before - so a nurse gave me permission to take a shower!!! I was SO excited at the prospect of washing my hair, and I changed into my own pajamas afterward...amazing. :) 

That afternoon, when I had proved to my nurses that I could successfully keep down my oral pain meds and I managed to hold onto the baguette and some water, they said I could go home!!! I was so exciteddd! They slid out my IV (it felt amazing not to be tethered anymore!), went over prescription stuff, and then we went out to the car. My mom and the nurse who was pushing the wheelchair were nervous about how I'd get into the car safely, but I managed no problem. :) (For anyone wondering, my PT taught me years ago to place my hands behind me on the seat and to push up with my arms backward to get into the car, as it's safer and easier than climbing in forward.)

It was awesommmmme to finally be home. I settled on the couch and my sweet dog snuggled up next to me and we took a nice long nap together. :) 

I will write in greater depth about my current situation in my next post (which I hope to write and publish this week!) but I owe you guys a more current update NOW :) so I will say that I am doing great! In the words of my surgeon, I am "not allowed to be a crazy person" until the very end of August, so I can't exactly go skydiving, and I haven't really left the house except for my post-op appointment, but I have been trying to make the best of things! I have been walking around the house - first with two crutches and my mom's support, then with one crutch, and now I mostly walk while clinging to a wall. I am more mobile than we all expected at this point, which is awesome. 

I don't want this post to turn into a novel, so - more details to come - but so far there are no regrets! :) Thank you, thank you, thank you for the support and continued encouragement! You guys are the best!

And....in case you're wondering, pictured below is what they took out of me (they scrubbed them clean first, of course!)! I was surprised at how big the screws were and how non-medical-y they appeared...they look like something you'd pick up at Home Depot for a construction project, don't they? ;) 


The pins that were in my leg 

Wednesday, July 6, 2016

The Adventures of Post-Op: Part 1

A dream was edging its way out of my mind. I tried to keep hold of it, to see how it was going to end, but it escaped, faded, and my consciousness was replaced by the strange sensation of air on my face.

I coughed reflexively, opened my eyes, and realized that it was an oxygen mask.

A woman's voice, quiet and kind: "Do you want me to take that off for you?"

I nodded, and the air on my face disappeared and was replaced by a wave of nausea. I pitched my head forward and there was the voice again: "Do you feel like you're going to be sick?"

Yes.

"Try to keep your head still and it might get better," the woman's voice said. "I know you have a motion sickness patch behind your ear and I'll give you some more meds so it will probably go away soon, but that's common, don't worry, just a reaction to the anesthesia." As she spoke, I felt a cold cloth being smoothed across my forehead.

And then: my mom's voice.
"Take some deep breaths. It's okay."

I turned my head toward her voice and suddenly, strangely, I felt like I was holding back tears. I tried to speak but the words felt heavy and cumbersome, and she didn't understand the first time, so I tried again.
"I don't want you to be sad."

I felt her hand on mine. "Oh....oh...I'm not sad, I'm not sad at all. I am so happy for you. He got them all. All those pins, they're out of your leg!"

My leg. It throbbed with a stabbing, constant pain underneath the layers of blankets...but somehow, knowing that the pins were gone meant that the pain mingled with relief.

I opened my eyes and saw my dad walk towards the bed and sit down. He said something about how two of the pins had been rubbing against the muscles in my leg every time I moved, leading to inflammation...more inflammation than they'd thought...and that the pins were breaking down the padding in my hip joint.
My elephant :)
(this pic was taken later, in my hospital room,
not in the PACU)

Somebody said that I'd taken two hours to awaken from the anesthesia - I wondered dimly if they'd been watching me that whole time. Another voice told me to close my eyes and sleep, but the throbbing was enough to keep me from slipping back into unconsciousness -- not excruciating, but far beyond the realm of uncomfortable. There weren't any pillows to spare (which - even in my drugged state, struck me as odd), so my mom placed my stuffed elephant (pictured - thanks T & T! :)) between my knees, which helped ease some of the pain. The clock on the wall indicated that it was past 7 pm, and I was the only patient left in the PACU (recovery room) at this time of night.

After about an hour, they moved my bed to an inpatient room. My memories at this point are a little bit blurred...my body felt hot, "like fire," I had managed to text to my friends (which probably sounded kind of alarming, but the fever combined with the anesthetics that must have been coursing through my system made it difficult for me to analyze the emotional repercussions of my messages).

As the night progressed, my mind must have become clearer, because my memories are more cohesive.

The main nurse that tended to me that night - let's call him Benny (not his real name) - had incredible bedside manner, but I'm not so sure if nursing was the right career path for him.

"I'm going to put some Motrin into your IV now, okay?" he said.

"Motrin?" I said, "Can we...um...double check on that? I've got a factor VII deficiency in my blood so I bleed more easily and I've been told not to take Motrin because that can make it worse."

"Ohhh," he said, "Hmm...I think Tylenol is a blood thinner, so Motrin should be okay."

"My pediatrician told me that Tylenol is what I should take instead of ibuprofen, so if you could confirm that that I'd really appreciate it. It's not usually a huge deal because my deficiency is mild but I'd want to avoid extra bleeding if we can," I said, and he smiled and agreed to check.

A few minutes later, Benny came back in. "Okay....so I won't be giving you Motrin," he said cheerfully. "Thanks for that heads up."

He was such a kind nurse, albeit he seemed a bit forgetful. He'd offer to go get ice for my leg, for example, and then he'd forget. Then, he walked in to check my vitals and as he was exiting the room, he said, "I'm just going to shut the door so you can try to get some sleep." - He immediately forgot, which was okay - it was just a door, not a major oversight, but it made my mom and I laugh.

Then came the spasms. If I could insert music into this post for dramatic effect, here's where I'd put an ominous soundtrack, because those spasms were harddddd to deal with. I'd kind of suspected that they'd sneak up on me again, because I asked my surgeon in pre-op if they might appear again, as they did the last time, and he sighed. "Yes, you'll probably get spasms again, because with CP, your brain will know there's something up with your leg, but it's not going to know how to handle that...so it will send mixed up messages to your muscles, which will manifest as spasms."

I never knew when the spasms were going to creep up on me again, but each time they did, both my legs jumped...and when my left leg jumped, the sudden muscle contractions in my already-painful leg were difficult to deal with.

Benny peeked his head in and asked if I was in pain. When I said yes - and when he noticed the spasms - he was sympathetic and truly wanted to help.

"I'm going to flush your IV with saline and then give you some Valium [a muscle relaxant] for the muscle spasms," he said. But when he bent down to flush the IV, it felt as if my veins were being flooded with bee venom - a constant stinging sensation washed over my arm, and I startled so hard that Benny jumped too. He pressed on the IV tube lightly -- "Does this hurt?" YES - even gentle pressure was painful. He summoned another nurse to take a look at the IV, and they agreed that if a saline flush was this painful, the Valium (which is achy going in anyway) would be intolerable. (I'm still not sure what was up with this IV, but it "traced" my veins with bruises...photo at the end if you're curious)

"Okkk," he said. "Let's leave this one in while I try for another access point." Then he sighed. "I just feel bad poking you with more needles...it's definitely not a fun thing to go through."

I assured him that at this point, another needle stick would be less painful than the current, constant-stinging IV. He pouted (LOL) and sat on the edge of my bed.

"Owww!" I didn't mean to exclaim...it just slipped out, because Benny was sitting on my left leg.

"Ooops, oops, oops!" He panicked and shifted his weight off of it.

Then he slipped on blue rubber gloves and casually broke the glove on his index finger so that one finger was exposed....which I'm sure aligns perfectly with the sterile technique protocols he learned in nursing school, but of course I didn't see anything at all, nope! ;)

He located a vein on my hand and poked, fiddled for a few moments, then drew the needle back. "Ohhh...ohh no, shoot. I'm sorry. I'm so so sorry, I had it and then I...I missed it. I'm sorry, I screwed it up."

The genuine guilt and sadness in his voice made me feel awful. "It's okay, really. I don't mind, it didn't hurt that badly. You can try somewhere else!" I said.

He found another spot, this time on my arm. "OH NO. OH I messed it up again. I'M THE WORST, I'M SO SORRY. I feel so bad," he said. "I don't know why that one didn't work!"
The passive-aggressive "please knock" sign on my door
(Made me smile :))

Honestly, it still didn't hurt as much as the IV in my wrist - and I told him so. "I'm sorry," I said, "I'm a tough stick! You should have seen the last time they tried to give me an IV, it was crazy. This wasn't that bad; you can try again if you want."

As he sat on the edge of the bed examining the needle, another nurse came in to check on his progress, glanced at the bloody needle in his hand and the red-spattered pillow under my arm, and sighed. "Bennnnnnyyy," she said. "That needle is bent!! How in the world did you bend the needle?"

He looked so dejected that I apologized again (the two of us just apologized back and forth to each other, haha!), and he left to retrieve the nurse supervisor - a large-boned, muscular older man with an unmistakable air of authority.

"Lower the bed," the supervisor ordered, his voice all-business. "Watch, Benny."

He grabbed my arm and studied it, selected a vein with the precision and concentration of an artist selecting his paints, and slid the IV in, first try. Then he led Benny out of the room and they didn't come back for several minutes.

When Benny came back, he removed my first IV and my wrist immediately felt SO much better. He must have been preoccupied by this whole IV situation though, because he apologized again and then left the room, forgetting administer the Valium and pain meds.

My pain was tolerable at first, but by 1:45 AM, it was getting to be too much. My pain threshold is fairly high, but between the spasms and the missed dose, I had my face pressed hard against my pillow to hide the tears.

And then...my phone buzzed. It was as if you guys KNEW I needed you, at that exact moment in time. First it was Tonia and Tara, and promptly a minute later, an email from Lizzi - and I can't even begin to express how much that meant.

Benny came in a couple minutes later to give me pain meds - but medication wears off. It's the messages of support, the outpouring of encouragement (from all of you) that stays with me through everything.

I'll write more soon about the rest of my hospital stay and then about my recovery so far post-hospital! Once again - THANK YOU! I've really appreciated the emails and comments and notes, more than you know :) xo



PS...a few of my more medical-y friends were curious about my IV bruises...in case you are, too, I've put them at the end of this post...but I put a ton of space between this note and those pictures in case you'd rather skip them (I don't blame you!). I won't share a pic of my incision though (unless you're reallllly curious) because it's a little more gruesome. ;)


warning warning warning


pictures of bruises ahead






















From my first IV
Benny's attempt #2 (his first try was in my hand)
(It looks like he poked me 3 times for this attempt?
I'm not really sure what happened! Poor Benny :( ) 


Saturday, July 2, 2016

One Surgeon, Two Overnights, Three Pins, Four IVs, and a Dash of Divine Intervention Later...

I made it!!!! I'm so sorry for the delayed response...I had a few rough days/nights and on top of that I've been completely exhausted, so I've been adding to this post in pieces. Thank you guys for allllll of the prayers and happy thoughts and emails and comments of encouragement. They were everything to me.

PART 1

When my mom is nervous, she cleans. (I wish I had that nervous habit!) On the morning of my surgery, she gardened, did the dishes, polished the floors, vacuumed the stairs, swept the front porch, swept the back deck, did multiple loads of laundry, and .... well, you get the picture! Martha Stewart would have been proud; our house was pristine from top to bottom! I joked with her that she should get someone to call periodically with false bad news, let it sit for an hour or two while she cleans the entire house, and then call back and tell her that there's nothing to worry about after all. ;) 

Meanwhile, I showered, packed my bag and cuddled my dogs, and then we set off for the hospital to make it there for half past noon. 

Here's a really cool CP perk: my surgeon allows all of his young adult neuro patients to have their surgeries at the Children's Hospital, which means there are unicorn paintings on the walls and rainbows on the floor tiles, and Child Life Services gave us tablets to use in the pre-op room. 

My mom and I played a crossword puzzle app called Codewords (really fun if you like word games!! Check it out!). (We laughed when something like "PANIC" and "SYRINGE" showed up in the crossword parallel to each other.) We waited for about 2 or 2.5 hours because my surgeon was running late - but eventually he arrived and he was very responsive to our questions. He did admit that he was afraid for the surgery, because oftentimes hardware removal is one of the hardest procedures for orthopedic surgeons - but he assured us that he would give it his all. 

My mom asked how long it was supposed to take, and he wasn't sure because it depended on a bunch of factors. "But don't get nervous unless I come out 30 minutes into the surgery. That means something went wrong." 

THEN comes the part we were waiting for! My mom was allowed to come back with me, and we walked to the OR along with a couple of residents and medical students, an anesthesiologist and an anesthesiologist nurse. (That was a weird experience for me! I know it's not that uncommon to bring yourself to the OR, but in my past surgeries, they put me out before we got there!) 

In the middle of the OR was a special table meant for hip surgeries. I climbed up onto it and then they proceeded to strap down my arms and legs so I couldn't move! I was a little unsettled by that...being fully conscious in an operating room while you're being strapped to a table is kind of freaky, I've got to admit. ;) 

My mom was more nervous than I was at this point, so I pointed to the large disk-shaped surgical lights above my head and asked her if she could get me some of those for my room.

My surgeon laughed. "You want these lights for your room?"

"Well, now's the best possible time to ask because she'd probably say yes!" 

Directly across from where I was strapped to the table, my hip X-rays were displayed on the wall. After putting the pulse-ox on my finger and electrodes all over my chest, they placed a laughing gas mask over my face. 

I don't know how many of you guys have ever had laughing gas, but I'd never had it before, and I was surprised: it didn't make me laugh! I remember saying something like, "My breathing feels fuzzy and my hearing is weird" and they assured me that those are common effects of the gas. All of the voices in the room sounded distant and echoing, reverberating like a radio with a faulty signal. 

The anesthesiologist kneeling by the side of the table grabbed my left wrist and started preparing the needle for an IV. 

"They have better luck with my right hand," I said, trying hard to enunciate my words over the mask. "Can you please do my right hand?" 

"No, it's OK, this hand is fine," she said, and there was a quick, sharp sting as she slid the needle into my wrist.

The faraway voices were starting to make me feel uncomfortable, like a guest in my own body, and I shut my eyes tight to try to block it out. 

"It's going to be okay," my mom said, but there was a question mark lingering at the end of her sentence and even through closed eyes I could tell she was trying to hold it together. "You're ok." 

"Yes," I said. "I'm ok, you're ok, I've got this for both of us."

Then the anesthesiologist who placed my IV spoke again in that distant voice: "I put your IV in a painful spot, so we are going to put you under now."

Darkness.

~


PART 2: "Don't get nervous unless I come out 30 minutes into the surgery. That means something went wrong."


I was unconscious on the operating table for this part of the story, so I can only fill in what I was told. 

About thirty minutes into the surgery, my surgeon came out into the waiting room where my mom was waiting by herself, sat next to her in a chair, put his head in his hands, and sighed. 

It's bad, he said. I've tried everything and I can't get any of the screws out no matter what I do. They just aren't moving. 

He said that two of them were protruding from the bone and were definitely causing tissue damage/irritation, and the third screw was buried somewhere and bone had grown over it. 

My mom - knowing how awful it would have been for me to wake up and realize that I had gone through all of this for naught - told him to do whatever he needs to do - just get them out. 

He nodded in agreement. "Okay. I will. But it will be a while longer. And you have to promise me that you'll protect her with all you've got [because any fall would shatter the bone]." And then he said what nobody wants to hear from their surgeon: "I feel sick to my stomach over what I'm going to have to do to her.

He sprinted back to the OR to break the washers on the screws and then to "core" out my bones, drilling out the bone tissue surrounding the screw circumferences. 

But then: he decided to try the conventional way just one. more. time. 
It worked. He got the first screw out.
Then he tried the second. Success.
Then he looked for the third. Found it. Got it out.

He was shocked. 

Later he said... I just looked to the ceiling and thanked the heavens above because whatever just happened wasn't me. 

So thank you -- all of you -- for your prayers and good vibes and support...thank you for being "with" me. I really do think it made a difference. 

I'll leave it at that for now, but there's so much more I need to write! I've been so tired and still dealing with recovering, so even this post took me a couple of days to write - but I promise I will be back with post-op details soon!!! I just wanted you all to know that I'm alive and grateful beyond words for those prayers and good thoughts. xo

Monday, June 27, 2016

Surgery Tomorrow!

I know it's been a while since my last post - I have several others in the works - but I just wanted to stop in and mention that my surgery is scheduled for tomorrow, so any prayers and/or good thoughts you could send my way would be hugely appreciated. :)

I'm not really sure what the immediate recovery is going to be like (but I will write about that after the experience!), but afterwards I'm supposed to be reallllly careful / stay off my leg for about 6-8 weeks, so that should be interesting...

The tough part about having CP in all of this is I'm not really sure how the surgery will impact me. Most people who have the same surgery don't have such strict 6-8 week restrictions, but because of my CP, everything is much higher stakes. If I were to fall on the unhealed bone and re-break my leg, things would be SO bad...in fact, I'm not even sure what the extent of the badness would be, because my surgeon trailed off at that part, but I'm pretty good at filling in the blanks. They're also thinking that because of my CP, it'll take longer for me to return to my "baseline." But despite all of this, my surgeon thinks that it's the right thing to do, and hopefully it will help with the pain in my leg!

...So despite all of the unknowns, I'm just going to take a deep breath and have faith that it will all work out for the best in the end.

I won't say that I'm not scared, because I am. I'm nervous about little things, like whether they will be able to find a vein for my IV after one of my only "good" veins was used for a blood test, so there's a huge bruise in the spot where they normally try to place my IV. Here's hoping they won't need to stick me twelve times and the blood won't spurt out of my hand like it did the last time ;) I'm also nervous about some bigger things...like how I'll be immediately after the surgery, especially after my last, not-so-good experience in the hospital where my pain was hard to control and I couldn't keep down food and water...and of course, I'm worried about the long-term effects of this decision.

I think my mom might be more scared than I am though...so the two of us are heading to the beach for the day to try to relax.

I hope the next time I post here, I come with good news. :) In the meantime, thank you so much for alllll of your support...it really means a lot!

P.S. If you've sent me an email and I haven't replied yet, please know that I have read it and I LOVE hearing from you! I just want to be able to give my response the attention and time it deserves. And if you'd like to send me an email for whatever reason, I'd love hear from you too...write to transcendingcp@gmail.com.

Until next time! xo

Thursday, June 2, 2016

THE FIELD TRIP FIASCO: When everything ISN'T fine, but one person makes all the difference

STORY TIME! :)

Last December, my anatomy class took a field trip to a cadaver lab to see an actual cadaver at a large university. I was excited about the trip itself, but I have to admit that when I saw the trip outlined on the syllabus, my heart sank a little bit. With CP, it's never "just" a field trip - life is a lot more complicated than that. What if the campus isn't accessible? What if we have to walk miles across the campus (which is the size of a small city) to get to where we need to be, and I can't keep up with the class? What if it's icy in December and I fall? What if...? What if...? What if...?

What if I just email the professor and explain my situation? I took a deep breath and decided that's what I'd do. She'd probably understand better than most, I figured, because she's a physical therapist by trade and teaches anatomy as an adjunct. Maybe she'd have advice and insights for me, or she'd tell me that there was no way to safely make the trip work, and that would be okay too.

So I womanned up and sent her an email explaining about my CP. It was the end of September at the time, but I decided it was best to be proactive about it...if you've gotta swallow a frog, do it fast! ;)

I tried to make it casual but direct...here's an excerpt if you're curious:
"I have cerebral palsy that primarily affects my lower body, so my balance and endurance can be kind of iffy, and I know that [UNIVERSITY] is a huge campus and it might be a little icy in December. I was wondering if you might have any insights with regard to how much walking might be involved and/or what the campus would be like? If not, that's okay - I just don't want to hold up the rest of the class, and I have trouble handling curbs because of my balance issues, so I'm a bit concerned about getting from point A to point B. :)"

THEN - ok, this part might've been overkill, but I wanted to make sure I got my point across loud and clear - I mentioned, briefly, the incident that occurred eight years ago, when I slipped and fell and broke my femur.

"I just want to try to anticipate any issues that might arise," I wrote. "It was a difficult experience to go through and it's not something that I'd ever want to repeat if I can help it - so I try to err on the side of caution, especially when pavement and ice are involved."

She emailed me back promptly and was very gracious, saying that her goal was to provide me with the physical support that I needed but for me not to feel uncomfortable in any way.

That sounds good, I thought.

Then she asked if we could meet before class to discuss things further. I agreed. But when I arrived to class early to meet with her, there was another one of my classmates sitting next to her at the same table. I know this might sound silly to some of you that are more..."seasoned" (is that the right word??) when it comes to talking about your disability, but I REALLY didn't feel comfortable delving into my personal life with this kid listening in. I'm not ashamed about my CP, but I'd still rather talk about accommodations and personal difficulties in a more private setting.

I think she realized this, because she watched me carefully for a moment as I tried to figure out what to do/say, and then she said something like, "I checked with the program director and he said there should be no accessibility issues so I think everything will be fine."

I nodded. OK. That sounds good, I said.

In hindsight, I think both of us could have handled this situation better. Maybe she could have asked my classmate if he could let us talk alone for a few minutes or informed him that we had made an appointment to talk, or maybe we both could have gone to another table. And maybe I could have been more open - maybe, after class, I could have explained my hesitation to talk about CP in front of my classmate and pressed her further about accessibility.

But I didn't. We didn't. She told me everything was going to be fine, and I believed her.

I should have realized. I should have realized when, 2.5 months after this conversation, she told us to meet in a certain parking lot on our campus that I'd never been to before and that seemed to be in a very odd place on the map. I started walking toward the general direction of the parking lot about an hour before we were scheduled to meet there. Plenty of time, right? WRONG. DEAD. WRONG.

I ran into another girl from my class as I was walking (for the sake of the story, let's call her Emma), and we figured we'd find the parking lot together, somehow...even though neither of us really knew where we were going.

First, we ran into a CEMENT STAIRCASE with about 30 steps down. SIGH. There was a railing, so I managed, but that's about when I realized that "anticipating any issues that might arise" is a heck of a lot harder than it sounds.

THEN. Curbs. E V E R Y W H E R E. We weren't even off our campus yet, and I was already in trouble! This parking lot that she wanted us to meet at was at THE MOST INACCESSIBLE SPOT POSSIBLE.

I didn't feel comfortable asking Emma to give me a hand on the curb. Big Mistake. I took a deep breath and attempted the curb and...

I fell. On the pavement. In the middle of the road. In retrospect, sacrificing my safety for the sake of my dignity by not asking for help was a Very Stupid Idea...and it didn't even work, because there's nothing quite as undignified as lying in a heap in the middle of the road after you trip on a curb.

Emma helped me up, and a few teachers from a middle school near our campus witnessed the whole thing and offered to help as well. ("Do you want to come in and see our school nurse??" they asked. No thank you...this situation is embarrassing enough as it is!)

After a moment, though, I realized why they were asking: blood was streaming from my lip. PERFECT. WE HAVEN'T EVEN GONE ON THE FIELD TRIP YET AND I'VE ALREADY MANAGED TO GET LOST, TRIP ON A CURB, FALL ON MY FACE, AND NOW, I'M COVERED IN BLOOD.

Emma was so amazing, though - she had tissues in her backpack (side note: ever since this incident I have followed her lead and I've never been without a pack of travel tissues...you know, just in case I fall flat on my face again in the near future, which is a clear possibility when you've got CP!)...and she was completely calm about everything.

She offered to tell the professor what had happened if I wanted to go back to my room and skip the field trip, but I figured if I'd made it this far already, I might as well keep going, so - after she reassured me that the cut on my lip wasn't noticeable (and it wasn't, at least after the bleeding stopped), we continued on our way.

After a few more feet, we came across another curb. (I have never seen so many curbs in a contained area EVER. It was like my Own Personal Hell) This time, I asked her for a hand.

"Oh, yeah, of course," she said - and it was no big deal.

We made it to the parking lot just in time (recall that I had left an hour early!!).

I had decided ahead of time with the professor that I would ride with her group so that she could drop us off in front of where we needed to be instead of walking a mile from the parking garage. That part worked out well, and it actually ended up that our entire class was dropped off in front, barring the professor and the three other people who were drivers - so it wasn't really obvious that I was being accommodated...but once again, there were curbs EVERYWHERE on this campus, and most of them didn't seem to have curb cuts. Sigh.

Just when I was trying to figure out how to handle the situation, Emma leaned over and whispered in my ear.

"I can be your person whenever there's a curb if you'd like." 

This was one of the kindest, most nonchalant offers of assistance I've ever received, and suddenly, the entire situation seemed about fifteen times less stressful. It's amazing how a little bit of compassion can make such a big difference. Every time we came across a curb, she just offered her arm.

The cadavers were really cool, too, and I'm so glad I went on the trip, but the most important lessons I learned from this experience didn't show up on my anatomy exam.

That night, I went back to my dorm room and sobbed into my pillow. I had held it together all day and I just couldn't anymore. It was yet another reality check that I am living in a world that wasn't built for people like me, a world where simple, everyday structures like stairs and cement curbs make my heart race and simple assurances like "it will be fine" from a physical therapist simply aren't enough.

I cried because I was frustrated, and embarrassed, and exhausted...
but also because there are people like Emma in the world
people who will be there when nobody else is
with a smile and a whisper:
I can be your person.

Monday, May 30, 2016

Guest Posts, Graduation, and Updates!!!

-HELLO!! :) -

I am cringing as I look back on the date of my last blog post because it's been way too long since I've last posted.

I have so much that I want to write about here, so if you're still here (thank you!!), thank you for your patience!

And...thank you to everybody who encouraged me after my last post, either in the comments, through email messages, or otherwise. Your words of support and your stories meant so so so much to me. I wore open-toed shoes to so many events in the past couple of weeks...parties, dinners, ceremonies...and I wore them with confidence because I had your words with me. One of my friends even told me that she loved my shoes!!! I don't think she had any idea how much that meant to me. :)

-GUEST POSTS-

Also - I have two guest posts that I've been meaning to mention.
The first (here) is a reposting of my last post (about my foot) over at an awesome new site called Break the Parenting Mold. There are so many amazing stories to be read over there, so please check it out if you have a moment!

The second (here) is from a few months back; it's an interview I did with my good friend Tonia over at Tonia Says. :) She interviewed a bunch of people with CP over the course of the month of March, and it was so awesome to be a part of that! (And if you haven't read through Tonia's blog, you should!! She is an incredible person with an amazing heart and a serious talent for writing!)


-LIFE UPDATES-

I graduated from college with a degree in neuroscience exactly one week and one day from today! College was such a fulfilling experience for me, and graduating was bittersweet...more on that (and my entire college experience) to come soon! 

I have a bunch of posts in mind and several that are half-written - one of my goals for this summer is to be more active on this blog again. I absolutely love this community and sharing with others...and I love hearing from my readers as well!! (If you'd like to reach out to me, please do! Send an email to transcendingcp@gmail.com. Several of you guys have already reached out, and I haven't had a chance to write you all back yet, but please know that I will, and it completely made my day to hear from you!)

I'd love to stay and write here for hours, but I have to go tutor soon - so I'll leave you with this photo of my sweet dog getting a bath. She hates being bathed (and...to be perfectly honest, I'm not a huge fan of bathing her, either, because I'm soaking wet by the end of the experience!), but she desperately needed it, and she was gloriously fluffy after we dried her off.  

I'll be back sooooooon!!! :) Love you guys!