how did i not post anything in July? i'm horrible at this blogging stuff! i'll try harder, promise. :] now where was i...
my parents drove from Tucson to Flagstaff the night of President's Day. they arrived in my dark hospital room sometime in the middle of the night. i was so glad they were there, not only so they could comfort me but also so Troy could go home and get some rest.
in all, i was at Flagstaff Medical Center about three days. i don't remember many details about it. my parents and Troy don't remember everything, either, but maybe that's a blessing. during stressful times like these, i think Heavenly Father might sometimes limit our recollection in order to help us move forward without too many negative memories. on to some of the things i do remember…
a different neuro doc named Dr. Nicol was assigned to my case. (i was not a huge fan.) his assessment was that i probably had a cavernous vascular malformation (CVM): a group of blood vessels in the brain that are malformed, causing abnormal blood flow that can lead to hemorrhaging. he said that i could have been born with it or had it for a long time, and that in many cases, people who have a CVM never have any ill effects. he also said it could be a brain tumor that had exploded. whatever it was, he saw calcium deposits in the MRI images, meaning the cause of my brain issue had been around for a while.
i think i registered what Dr. Nicol was telling me, but i was more focused on what was going on outside my brain. i was still super worried that my left side was going to give out, too. the doctor tried to explain to me why this wouldn't happen:
"see, Ashley, the bleed is on the left side of your brain and that's why your right side is affected. there's nothing wrong with the right side of your brain, so the left half of your body will be fine."
"can the blood bleed into the other side?"
"no, i don't think so. the worst of the bleeding should be over by now. the first 24 hours after a hemorrhage are the most dangerous. you should be ok now."
i think Dr. Nicol was trying to be comforting, but that just made me worry more. i should be ok? just should?
Dr. Nicol concluded that surgery would not be immediately necessary. before operating, he wanted to wait for the blood in my brain to dissipate so that he could see more clearly what the cause of the bleed was. he suggested i be sent to rehab for a month or so until that happened.
well, my parents were not thrilled with this plan. they didn't agree with waiting. i didn't fully realize it at the time, but my parents spent hours trying to get me into another hospital so i could be treated by a better neurosurgeon. i am so grateful for them.
first, they tried to get me into Barrow Neurological Institute in Phoenix since we knew that was one of the best neuro hospitals. no luck -- all beds were full. they then called any and all doctors we know through church to see if they could help. they talked to my cousin who is in his med school residency. my sister, Keele, suggested they talk to her neighbor, the head breast cancer doctor at University Medical Center in Tucson. she agreed to put a good word in with one of the neurosurgeons at UMC. thanks to her help, my case was accepted by Dr. Martin Weinand, one of the doctors who helped save Congresswoman Giffords only a few weeks prior.
while my parents were making calls and working with Flagstaff Medical Center and UMC to get me discharged and transferred, i was having a pretty continuous string of panic attacks. i have struggled with panic attacks and obsessive compulsive disorder (OCD) since i was five years old. normally, i panic over things that have about a 5% chance of actual happening, and the panic attacks pass after a couple hours at most. these panic attacks were a different brand: there was a large chance my fears would actually come to pass and the panic attacks spanned most of the day. the nurses often gave me Xanax to help me relax and calm my quick breathing and racing heart. (hmm…maybe i don't remember much of Flagstaff because i was drugged most of the time...)
during one of my episodes, a nurse gave me a piece of advice that i have tried to follow ever since. he told me that the situation was out of my hands, and that worrying wasn't going to make things any better. (my mom often repeated these words to me. she would refer to him as the "Jesus nurse" because of his long hair. :])
on Thursday, preparations were being made to transfer me down to Tucson. i had been moved out of the ICU, but i was still seriously worked up. a nurse pushed Benadryl through my IV in an attempt to calm me down. it did the opposite. what followed was the worst panic attack i think i've ever had. i felt out of my mind. the Benadryl made me so woozy and even made me feel like i couldn't move -- not the best idea for somebody who was worried about that happening to begin with!
i finally fell asleep after that panic attack and awoke in the early evening when my parents and nurses were discussing my transfer to UMC. i would go by ambulance and would leave soon. i did not want to travel alone, but when the paramedics came to pick me up, they said nobody could travel with me. worst panic attack ever, round two, anyone?
i tried really hard to get out of the ride to Tucson: can we go tomorrow instead? no, i don't want to take Xanax. i don't want what happened with the Benadryl to happen again! can somebody PLEASE travel with me? please?
everybody's patience with me was wearing thin. finally, all efforts to convince me to go quietly were abandoned and i was placed on a gurney and rolled into the ambulance. i took a Xanax, said goodbye to Troy and my parents and just prayed and prayed. my parents assured me they would follow the ambulance the whole way down.
the medic caring for me in the back talked to me to calm me down. i brought up baseball and asked him about his family. he took my vitals every 15 minutes and sometimes made less-than-reassuring comments about them. after about 20-30 minutes, the Xanax did its thing. i fell asleep till we got to Tucson. when i woke up, i looked out the back window to see if my parents were still following. sure enough, there was my dad's truck. i saw the I-10 exit sign for Grant Road and knew we were close. it was almost over, and for a brief moment i thought: i made it through. if i can get through this, maybe i can get through whatever is coming next.
last week i went shopping for clothes for the first time in quite a while. i didn't bring that many clothes down from Tempe, so i have been wanting/needing to go shopping. i didn't find much, unfortunately, but i did find this cute shirt at Gap:
ok, now i have a new shirt. what should i wear with it? how about jeans!
got that taken care of. what about shoes? after all, an outfit isn't an outfit without cute shoes. thankfully, i didn't have to think too hard about my footwear selection. it was immediately obvious what shoes would look best with my new ensemble. these!!!!
i know what you're thinking. where-oh-where can i get a pair? don't fret; you, too, can own these babies, and i won't even be upset if you copy me.
in case you don't see the readily apparent awesomeness exuded by my hot kicks, let's take a closer look:
first, please note that these are straight outta the Target men's section. the steely gray and dirty white is nicely complemented by perfectly placed splashes of deep red. second, the slit in the right shoe adds just the right amount of attitude. and of course, who could overlook the most striking feature of all: the twisty laces that hearken back to the glories of 4th grade. (initially, the twisty laces were installed to allow me to tie my shoes with one hand. i can tie regular laces now, but switching would mean i'd lose out on the awesomely quick tighten/loosen abilities of twisty laces!)
aside from their fashionable qualities, my shoes are also completely functional. so functional, in fact, that i am not ashamed to say i wear them every single day. they are the only shoes that fit over my slick AFO:
the AFO is actually super helpful. it helps me walk. without it, my right foot doesn't really behave. it turns in (due to spasticity) and won't lie flat.
the AFO keeps my foot down and also tilts my leg slightly forward so that i don't hyperextend my knee as easily as i do without it, and the joints built into the ankle portion allow me some flexibility while still providing control. when i wear it, i actually can walk kinda well!
when i was at the rehab hospital, my mom ran to Target to get me my shoes. i knew they would be a men's shoe since i needed something a couple sizes larger than my normal [rather large] shoe size in order to accommodate the AFO. i was nervous about what they'd look like. lucky for me, they turned out to be super stylin', not to mention they go with everything!
cute summer dress?
long maxi dress?
khaki linen pants?
any style i could possibly wear while also needing to walk in public?
you get the idea.
some may think i would want to wear sandals in the hot weather, or that i would miss my Vans…or any other shoe for that matter. no way, jose! that's like asking a bald guy if he misses his hair. and to think, if it wasn't for my stroke, i never would have thought of wearing these shoes. ever.
here's to you, my faithful shoe companions!
next in was a neurologist. she asked questions and examined me. when she looked down my throat, she called the nurse over to show her something. "see that?" she asked, referencing the hangy thing in the back of my throat. "see how it is leaning to the right? that's something you don't see often."
she ordered an MRI for me. as i waited to be taken in, i went through bouts of panic and shorter bouts of calm. i was so thirsty, but they wouldn't allow me to drink anything. only ice chips, a few at a time, and IV fluid. less than an hour into my ER visit, i had to pee so bad. the nurse brought in a bedpan. i felt helpless but could care less about modesty (a recurring theme over the next month or so).
when it was time for my MRI, they shot me up with Valium to help me calm down. i was already in major shock, and the thought of being in a narrow tube with my head strapped down did not help matters. (it was one thing to be in the tube and lay still if i could have moved had i wanted to; it was an entirely separate matter to be told not to move and know that moving wasn't even an option.) i wanted Troy to come in with me, but they told me that was not a possibility. somehow, thanks to God and the Valium, i made it through. we went back to my "room" and waited.
the next thing i remember, the doctor with the swab came to say the test results came back negative. the paralysis was not induced by flu. dang it.
the neurologist then returned with a picture from the MRI. this first image is what i saw (the other two came later):
what was that huge spot on my brain? she explained it was an aneurysm of some sort. a brain bleed. i don't recall much else of her explanation.
i had Troy call my boss at work to tell her i wouldn't be in the next day. this will probably take some time to figure out, i thought. maybe i'll have to stay in the hospital for a few days. i called my parents and explained to them what had happened. "do we need to come up there?!" my mom asked. i told her we'd see what the doctors said next and call them back.
i drifted in and out of sleep for a few hours. finally, at around 11 at night (according to Troy; i don't even remember), they transferred me to the ICU. my stay in the ER had not felt like 8 hours, but i could probably thank the Valium for that.
the end of president's day is pretty foggy for me. i know i had nice nurses in the ICU who frequently helped me on the bedpan. my room was dark. there were IVs. i'm sure i said many prayers. i remember Troy's tired face. i told him to tell my parents to drive up from Tucson. Troy tells me now that i kept asking him if i was going to die.
most of all, i remember the headaches starting. deep, painful, lingering headaches like i'd never had before. no amount of Tylenol helped. just as i would drift into unconsciousness, the pain would increase, making sleep for me -- and Troy -- very difficult. i moaned and squeezed Troy's hand, willing myself to sleep and escape a day that had started as a carefree holiday.
my name? [ashley white] what were my symptoms? [i can't move my right side. it's completely numb] what was i doing before they started? [just sitting here] had i crashed that day? [no] had i hit my head? [no] was i sure? [yes!] was i hydrated? [yes] had i eaten enough that day? [yes] was i positive i hadn't fallen? [yes, yes i'm sure!] who was i with? [my boyfriend] what's his name? [troy. he should be coming down soon] did i have any preexisting conditions? [just panic attacks]
"okay ashley, this is probably a panic attack then," said one of the medics while another placed an oxygen mask on me and yet another took my vitals.
"no, it's NOT." i said emphatically. "i know what a panic attack feels like. this is NOT just a panic attack. i can't move my right side at all."
"well you are moving it."
i looked down. my arm and hand were moving on their own, but i couldn't even feel it.
"i'm not moving it on purpose…"
where's troy? i kept looking over to my left, searching for his gray jacket.
after more examination: "ashley, we are going to recommend you get to the hospital as soon as possible."
"what is wrong with me?!"
"we don't know, so you need to be examined at the hospital."
"am i having a stroke?"
"no, i don't think so. but you should go get checked out. would you like us to call an ambulance?"
i knew the answer was yes, even though my need for an ambulance meant my condition was more serious than i was willing to accept. this was not something simple, though; i could feel it.
troy finally came into view. he was running toward me, his face painted with worry. man, was i glad to see him. i told him what was happening, and despite his concerned look, he assured me that everything was going to be ok. i wanted to believe him but felt so scared. (he tells me now that he wasn't just saying that to help me calm down, but that he actually felt that i would be fine.)
the ambulance arrived and i was loaded on board. i wanted troy to ride with me, but i braved up and let him take his truck down instead so that he would have a car. the lady inside the ambulance started an IV. searching for somebody to give me answers, i asked her if she knew what was wrong with me. she said she didn't. i don't recall what else she said, but i remember it definitely didn't make me feel better about the situation. i tried to relax and pray. i calmed down a little bit and just focused on the interior of the ambulance and the bouncing and clanking noises caused by the winding road.
we went down the mountain without lights or sirens, so it took about 30 minutes to get to Flagstaff Medical Center. once there, i was rolled on a gurney to one of those curtained "rooms" in the ER. troy got there shortly after and sat next to me, holding my hand and trying to calm me down. i was constantly moving my left side to make sure it still worked. my biggest fear, aside from dying, was that my left side would go out, too, leaving me completely paralyzed. (this fear hung around a while -- about three weeks.)
nurses gathered around me and asked many of the same questions that ski patrol had posed. as i answered them this time around, i noticed that it was difficult to form my thoughts into words. there were times i was trying to talk and would just stop mid-sentence, and then wonder why i had stopped. i also had trouble reading paperwork because the words blurred together.
at the first possible moment, troy closed the curtains and gave me a blessing. i had wanted one back at snowbowl, but there was no time for it. after the blessing, troy told me that he felt very calm about the whole thing, that he knew i would be fine. i grasped on to his hope to fill the gap where mine had almost vanished.
on friday the 18th, i drove up to flagstaff to spend the three-day holiday weekend with my boyfriend, troy. that night, we watched the Dark Knight. saturday we drove into the woods and played in the snow. sunday was church and a yummy homemade dinner. i don't remember what we made, but i know it included biscuits. the whole weekend we talked about how we wished it would snow really hard so that i would get snowed in and have to stay in flagstaff longer.
on monday morning, we got up early, jumped into our longjohns and thick socks, filled our camelbacks and headed up to snowbowl for a half day of snowboarding before i had to head back to tempe. this was only our second snowboarding trip of the season. i was pretty sick during the first one up in brianhead, utah, so i was really hoping to have a solid day at snowbowl. even before we got up the mountain, though, i was feeling nervous and not as excited as i had hoped. looking back, i wonder if i somehow knew what was going to happen. but to be fair, feeling nervous is definitely not new for me -- i'm a worrier (that's why my friends call me whiskers. <--- if you get this reference, consider me impressed).
worried or not, i didn't want to ruin the trip for troy, so we bought our lift tickets and started riding. my worry eventually subsided, and we had several fun runs. my right leg was hyperextending a lot, making carving very difficult. i figured it was leftover weakness from my broken ankle that hadn't returned back to normal yet. in fact, i had started seeing a physical therapist to try to strengthen my muscles. so, i just chalked it up to a weak leg.
around 1:30, i told troy i was going to take a break and rest my leg. i unstrapped and walked into the lodge to go to the bathroom. my right leg was like jelly. i almost couldn't walk. dang, i thought. maybe i should call it a day. so i limped back outside and sat down by the lift and waited for troy to finish a run. when he made it back, i told him i was going to rest a bit more, and then i'd join him again after his next run. he left. i pulled out a leftover biscuit and started eating. i saw troy get on the sunset lift and start his ascent. the next hour was the scariest of my life.
like a typical right-hand-dominant person, i was feeding myself the biscuit with my right hand. after the third or fourth bite, i noticed my arm felt heavy. then really heavy. then it was gone. i couldn't lift it. and i couldn't move my leg. within 30 seconds, i had lost all movement on my right side, and it was completely numb.
immediately freaking out, i scrambled for my phone. dead. there was a girl and a guy sitting close to me. i frantically asked the girl to use her phone and fumbled over the keys dialing troy's number. no answer. redial. no answer. one more time. nothing. my freak-out had now turned into intense panic.
"please!" i yelled to the girl and guy, "please go get ski patrol! i need help!"
"uh, ok," they said. but they didn't move. more urgently this time, i begged them to hurry and get help. the guy got up and went toward the lodge.
i laid back on the snow, trying to get ahold of myself. i prayed and pleaded for Heavenly Father to help me. my hyperventilating was causing my left side to tingle and not work properly. i'm losing my left side too, i thought in terror.
it has been quite a while since i shared my last update on how my recovery is going. the radio silence is mostly due to the fact that this stage of my recovery is pretty unexciting. when my mom was first updating facebook, things were changing every day and much was unknown. later, she recorded the progress i was making on a daily basis. since coming home from the hospital at the end of March, the steep slope of improvement has leveled off a bit. that's not to say i haven't made huge steps, but it has just been a bit more gradual.
if you've been following my progress, you know that my right side was completely flacid at first, and when i started getting movement back, my leg responded better than my arm. now, mr. arm has made a comeback, tortoise and the hare style! i just recently completed my 7th and final week of occupational therapy. my awesome therapist, Cherie, discharged me and said that time and practice will return my arm and hand back to normal. all my arm/hand/shoulder muscles work and i can control them rather well. now i just have to continue to strengthen them, refine my fine motor abilities (i.e. writing!) and work on breaking up the spasticity in my pec and shoulder by stretching and getting massages.as for señor leg, he is being stubborn. while my hip on down to my knee is working fine, everything below is taking more time. what i can do is flex my ankle up. yay! because of the crazy spasticity in my tibial muscle and foot, my foot turns in still and inhibits any other range of motion. i am getting better at walking, even though i can't yet use my ankle properly. i ditched my cane a week ago (his name is Melvin...i'll introduce him later) and now walk with my AFO (ankle-foot orthotic brace) only. i nearly fall over sometimes, but it's getting better and feels more and more normal.
on the tumor side of things, i had an MRI today and will follow up with my surgeon next week to see if there has been any regrowth...which there won't be, right? i had some bad experiences with MRIs in the hospital, but the one today went surprisingly well (minus the Nickleback song that came on around minute 15. gag.).
with my 24th birthday tomorrow, i am just so thankful to not only be alive, but to be improving at a solid pace. it has been only 3 months and four days since my stroke and less than 3 months since my surgery, and i have already regained so much of my movement. the rest will come, i know it. in the next year, i plan to:
- be able to move all the muscles in my body
- move back to the Phoenix area
- be back to (or at least close to being back to) playing softball
- walk and run on the beach
- take my dad up on his offer to take troy and me to any baseball game of our choice (!!!!!)
- keep tumors out of my brain
- not waste my time in finding and doing what brings me and others joy
- extend myself to serve others more and share my testimony of the healing power of Jesus Christ
i've got a lot to accomplish. but i'm excited. and i'm excited to be here and to improve myself through this refining process. bring on year 25.
why resistance? well, i've never wanted to have a personal blog. maybe it's because i write all day at work and that's the last thing i want to do in my free time. maybe i'm not good at finishing projects or keeping journals. or maybe it's because i don't consider my thoughts and the goings-on in my life to be noteworthy enough to have their own space on the interwebs (aside from facebook, of course). when i got over all the reasons why i shouldn't make a blog, i came to the conclusion that, after all that has happened this year, there are actually a ton of good reasons why i should:
- writing out what has happened to me will be good for my recovery -- and maybe even for somebody facing a similar circumstance
- i know i'm going to want to remember specifics about this experience. if i don't write them down, i'll probably forget
- speaking of writing: i can't use a pen very well yet, so typing a blog just makes sense
- instead of giving updates about my progress on Facebook like i have been doing (rather crappily!), this blog will help me keep my wonderful friends involved -- without the 420-character limit
admittedly, i'm writing this blog mostly for selfish reasons. hopefully, though, my readers will enjoy the experience as much as i will and maybe even gain a bit of wisdom or smile from time to time. thanks in advance for reading! :]