this post has been a long time coming. i've been thinking about writing it ever since i started this blog a year and a half ago, but because i'm terrible at posting consistently, i never got around to it. i choose to write it now, February 21, 2013, because today marks two years to the day since i had my stroke and this new era of my life started. (an occasion my kind classmates didn't forget at school today!)
my "birthday" surprises
in some ways, it feels like it has been far shorter than two years. in most ways, though, it feels like it has been much longer. after all, a lot has happened!
i rehabbed in Tucson for nearly a year, got engaged, moved back to the Valley, got married, started a new job and started school.
a few of my classmates from my occupational therapy assistant program
i went from not being able to move my right side at all, to only needing some assistance, to being independent with the help of a few devices.
my hair started as a buzz, made it to the fauxhawk stage and is now past my ears.
and i went from having constant anxiety to…well, i guess some things never change!
not a day goes by that i don't think about February 21, 2011, and all that has transpired since, and not a day goes by that i don't think about the many blessings and miracles that God has given me during that time. so that i can remember them in the future, and so you can get an idea of why i feel such gratitude today, i want to share just a fraction of these blessings with you.
in no particular order:
i'm alive! this is especially awesome considering somewhere around 37 percent of hemorrhagic strokes result in death within 30 days. yikes.
my stroke hit when i was sitting down. i wasn't driving -- which i was planning on doing less than two hours from that time. i wasn't on the lift. i wasn't on my snowboard.
there were people nearby to run for help. ski patrol was close and came to my aid quickly.
i was somewhat calm on the ambulance ride to the hospital.
Troy and my sister Alicia both told me they felt an undeniable, calm reassurance that everything would be ok. i needed to hear that.
Troy was with me and he gave me a blessing.
my parents did a lot of research, made a lot of calls and fought to get me transferred down to Tucson to get me better care.
i don't remember much of Flagstaff. that, i think, is a major blessing.
one of the top neurosurgeons in the state accepted my case. my surgery went exactly as planned and even ended early.
i was so calm right before i was wheeled back for surgery. so unlike me!
i had no infections, side effects or complications from any medication, surgery or treatment.
i had no seizures whatsoever. this is very rare and still surprises my neurosurgeon.
i can use my hand very well. i was told this would never happen.
the tumor i had was the "best" one possible. all of it was removed in surgery and it has not grown back (knock on wood!).
i had unwittingly been prepared for handling the loss of function on one side of my body. between breaking both legs and my left wrist, i was already pretty adept at finding new ways to accomplish daily tasks.
the stroke itself is a blessing. i had no other symptoms of a brain tumor, so it may have kept growing and could have wreaked more havoc than it did.
the stroke did not affect my understanding or use of language. this is very common in left-sided strokes.
i lost no cognitive ability, either (that i know of!). even though my body doesn't work as well as i would like, i have my mind -- and i would never want it the other way around.
my nurses and CNAs were amazing. one nurse in particular was so influential in my recovery that i now consider her my sister.
before everything happened, my parents and my sister Angela had already studied the concept of neuroplasticity. they were able to share their knowledge with me and ultimately helped me regain more muscle function than would have been possible without it.
my grandfather generously gave me enough money to help cover thousands and thousands of dollars in medical bills.
i got to spend a lot of time with my family in Tucson. it turned out to be the last time i would do that before getting married.
there were many, many instances when i was blessed with extra faith, extra endurance, extra strength, extra hope and extra peace. these moments, though small, carried me through. and still do.
and the biggest blessing of all
i have amazing relationships that have been -- and continue to be -- such a support to me: my loving and positive family; my selfless and understanding husband who helps me keep my chin up; my thoughtful and encouraging friends; church members; coworkers; classmates; and on and on and on.
this is just a small list of blessings and miracles. i know there are MANY i am forgetting, and even more that i don't even recognize at this point. even though these two years have been crazy hard, it is easy for me to recognize how perfectly orchestrated it has all been. i see God's hand in my life, and i have felt the peace and comfort that comes only through Jesus Christ.
if you didn't believe in miracles before reading this, i hope you do now. :]
good news: there's a bunch of pictures and videos in this post! sorry for the lack of visual components up to this point. :]
like i mentioned at the end of my last post, my time at the rehab hospital was very difficult, but also very rewarding.
but also very difficult.
a lot of big things happened during my first week at OVH. nearly right after i arrived at my new home, Troy showed up sporting a pretty sweet mohawk -- a sign of support for my impending hair cut. (and probably a bit of encouragement to take the shaved head route since i was balking at the idea, even with half my hair already gone.)
a CNA arrived soon after to get my vitals and weight. i was shocked when he said that the bed scale was weighing me at 107 pounds. i told him there was no way that was correct! i mean, i know i hadn't been eating much, but i was 125 pounds before this whole situation started. how could i have lost nearly 20 pounds in less than a week? i didn't believe that scale until i saw pictures of myself many weeks after (see below). throughout my whole hospital stay, my family offered to get me anything i would actually eat. the In-N-Out across the street got some business on my behalf.
on Sunday, a physical therapist named Eric came to evaluate me. i was so happy to see that he was a younger therapist. because the median age of the patients on my unit was 85, i was worried i would be treated by somebody who wasn't current with therapies for younger patients. Eric was super friendly and was excited to treat me. he said all the other PTs were going to want to have me since i was young and had a great potential for improvement, but he said he would make sure he got to keep me.
On Sunday evening, i finally agreed to let my sister Alicia break out the clippers and buzz my head. Troy and most of my family gathered in the little bathroom to take part in the experience, and those who couldn't be there physically joined via Skype. some of the nurses even peeked in. we made sure to take lots of pictures and video of the whole process:
the before: looks like normal hair on one side...
the other half
my biggest supporter
rockin' the punk bangs
my sis, Angela, trying to make the bangs work
despite my smile, i was sad to see it go
while i held up pretty well during the shave, i broke down toward the end. i had a difficult time seeing all my hair go -- and not even in an all-girls-love-their-hair kind of way. it was more that i hated seeing myself bald because it made me look sicker than i thought i was. or was i that sick? i didn't like to think about it. there were some advantages to my freshly shorn noggin, though: first, i found out that i have (or, had) a rather perfectly shaped head, which elicited many compliments from visitors and hospital staff. i also got to go back to my natural hair color in a very quick way (something i had been meaning to do anyway). on a more practical note, the buzz was easy for me to care for with only one working arm.
after the shave, Troy left to drive the four hours back to Flagstaff -- a trip he would take many, many times over the course of the next year plus. my mom stayed the night with me on another uncomfortable makeshift bed -- something she would do nearly every night of my three-week stay. even now, i am so thankful for the sacrifices my loved ones made for me in my time of need.
there's so much i want to remember about rehab. if you get bored and quit reading, i totally understand! for the purposes of remembering, though, i think it's important for me to type this all out.
the menses
what? you're hesitant to read something with menses in the title? ok, i might not blame you. it's important for me to include it in my blog, though, because it marked some interesting feelings during my hospital stay. i'm like any other female: i hate cramps. when i felt the first tinge of cramping after i arrived at the hospital, however, i can't really describe how good it felt. it was painful, yes, but the pain was something i was familiar with. everything since February 21 until that time was completely unfamiliar -- and scary. my period, though? i knew that. i knew what to expect. who knew Flo could actually be a relief?
Grams
after the first few days, i found out that my family had not informed my Grandma White about what had happened to me. because Grams had some heart problems, they did not want to tell her until i was out of the woods so that she didn't get too worked up. my parents wanted to keep waiting to tell her, but i insisted that she know. i knew Grams had great faith, and i knew her prayers on my behalf could help me. so, after dinner on the Friday after my arrival, i called Grams myself. we figured that if she heard my voice, she would know that i was ok and would maybe take the news a little better. just in case, my dad arranged for one of her friends to be next to her during the phone call in case she got too distressed.
i was very nervous about setting Grams off on a heart attack, so i did my best to sound like my normal self. when i explained what had happened, i was as upbeat and positive about my recovery as i could muster (even if it didn't necessarily match what i was feeling). Grams was very shocked, and told me she had to hang up because she couldn't handle what i was telling her. oh, no! what if she dies because of what i told her? thankfully, Grams called me back and i was able to explain things to her more fully.
spasms & Baclofen
up until i called Grams, i hadn't really rehearsed my entire story to anybody, nor had i really thought about it in that much depth. between the emotions of rehashing the scariest days of my life and the nerves associated with calling Grams, my body did not react too kindly. if you recall, i had already been having strong spasms in my leg -- that was nothing new. what was new, however, was their intensity. the weekend was filled with many, many instances of uncontrolled shaking in my leg and multiple panic attacks. (ok, it was actually one really long panic attack.) the two did not work together well at all; the more panicky i felt, the stronger my spasms were.
Eric (my PT) had tried to convince me prior to this point to start taking a muscle relaxer called Baclofen. he explained that, with the medication, i would move better in therapy and my spasms would diminish. i wanted nothing to do with Baclofen, however. i didn't like the thought of putting more drugs in my body, and i was not keen on the side effects, particularly the fatigue and sleepiness. as much as i resisted the Baclofen, my spasms were literally out of control -- not even Troy could hold my leg down. i finally gave in and took the pill. the spasms did decrease over the next couple days, and while the meds definitely took a toll on my energy level, my therapists promised me that i would get used to the feeling and would establish a "new normal" in my life. (fyi, i miss my old normal!)
i would be remiss if i didn't include the part about Baclofen making me drunk. apparently, it was necessary for me to take this medication with plenty of food and water. before i realized this, though, my mom and Troy got to witness my drunkenness. mostly, they just laughed, and i couldn't blame them. i was stupidly slaphappy and would laugh for minutes at a time for no reason. i think this side effect came at a good time to cheer us up. :]
therapy
my first few days of therapy were incredibly challenging. i couldn't make it through a single physical or occupational therapy session without crying. i'm sure my therapists thought i was unstable emotionally; which, to be fair, i guess i really was. in addition to my lifelong struggle with anxiety, i have also had some run-ins with depression. about seven months before finding myself in the hospital, i had finally weaned myself off the antidepressant i had been taking for a few years. i finally thought i was strong enough to get by without it. so, take the fact that i am prone to depression and have anxiety and mix that with the normal, expected feelings of somebody whose life has just been flipped upside down: that was me. i was absolutely overwhelmed. the rational part of me knew there was hope, but the depression stifled it. thankfully, my psychiatrist called my mom around this time to see if there was anything he could do to help me. why, yes! i was quickly started on an antidepressant.
every weekday during my entire stay, i attended three hours of intense therapy. usually, the mornings were reserved for OT since many of my ADLs (activities of daily living) took place then. i was blessed to have a wonderful COTA (Certified Occupational Therapy Assistant) named Ashley who was the same age as me. this made the naked parts of therapy (showering, dressing) so much less awkward than they could have been! i was also treated by other COTAs and OTs, all of whom helped me make huge gains in gross and fine motor control of my upper extremity and in learning how to compensate for my hemiparesis. it was (and still is) amazing how my therapists' seemingly simple tools and ideas made such great dents in my recovery. for instance, just by applying pressure against my hand and asking me to try to push back against the resistance, i was able to extend my elbow for the first time. and, knowing that i loved baseball and softball, their idea to roll a ball down a board and challenge me to extend my wrist to trap it between my palm and the board proved the most successful of many attempts to help me move my wrist.
for PT, the focus was on getting me up and walking and strengthening my lower right side so i could improve my balance and endurance. Eric had me on the table mat on my knees, on all fours, on my stomach and on my back. it was surprising how horrible my balance was at first, and i fell on the mat many, many times. (quite frustrating!) he also had me work at the parallel bars and on a set of steps. i spent a lot of time learning to walk again -- first by moving my feet to scoot my wheelchair, then by wearing a brace and using a quad cane while being anchored to my therapist with a gait belt, and then by losing the gait belt and hoping i didn't eat it.
mat work
this day was SO windy. i thought i would fall over at any moment
when i saw this pic, i realized how much weight i really lost.
no bueno!
at this point, i had little control of my butt, hips, and hamstrings, and no control over anything lower. since my calf muscles weren't working, my knee was hyperextending somethin' fierce. with the help of the AFO, the cane, a lift in my right shoe and some major concentration, i was able to make some progress with walking. at the end of the three weeks, Eric's goal was for me to be able to get myself off the floor -- kind of in preparation for if i ever fell at home and nobody was around to help me. i figured i could accomplish this task because i knew my left side was strong and could compensate for my right side. turns out i was wrong! it actually took a couple months after leaving the hospital for me to be able to pick myself up off the floor (no pun intended). he also wanted me to be able to get into and out of his motorcycle sidecar, because, why not. that goal was a success, and i have pics to prove it. :]
apparently, it was against the rules to take me for a spin :[
one more thing about therapy: i know i've mentioned it was frustrating, but it was also utterly exhausting -- and not any type of exhaustion i had ever felt. my body was tired, yes, but it was my brain that was the most drained. when i first got to OVH, i was told that i would need to rest in between sessions of therapy. i didn't understand why until after my first session. trying to move even one of my lifeless body parts required the most intense focus i had ever exerted, resulting in an incredible fatigue that i can't really describe.
thank goodness for TV and the Internet
between the Baclofen and fatigue from therapy, i always wanted to sleep when i wasn't with PT or OT. for the first time in my life, though, i could not nap. at all. (if you know of my affinity for snoozing, this should surprise you as much as it did me.) no matter how hard i tried, sleep was elusive.
instead of sleeping, i tried reading; that, too, was a bust. because of my panic problems, i was so worked up at all times that i couldn't calm down enough to sleep or focus on more than a couple sentences of a book or magazine. my racing thoughts never slowed, but were instead filled with a constant stream of fears about having another stroke or getting sicker. my heart felt like it was beating as quick as a hummingbird's, even while i was in bed and trying to relax. the only peace i could find (most of the time) was by looking at stuff online or watching TV. the mindlessness of both activities somehow provided a brief reprieve to my worried mind. luckily, Bones was on almost every night, so i got to introduce my mom to one of my favorite shows. :]
