[past & present] 4 years?! 4 real.

yesterday marked four whole years since my stroke! that's a presidential term. an undergraduate degree. twenty eight dog years. the amount of time between decent Arizona Diamondbacks teams. wow. 

since 2011, this time of year is filled with a lot of contemplation and gratitude, a little bit of sadness, and not a little bit of anxiety. contemplation of, and gratitude for, the blessings and miracles that allow me to be alive and as functional as i am today; sadness and mourning for the old Ashley and what she used to be able to do that she can no longer; and anxiety about having another stroke, my brain tumor regrowing, the constant possibly of another health crisis and countless other worries. 

to celebrate my strokeiversary, Troy and i spent the day being as active as i've been in a long time. i am physically a lot weaker than i was before my stroke, so i wanted to feel my muscles moving and my heart pumping as close to like the old days as possible. i woke up and stretched, did some ab and arm exercises, rode my sweet trike down the canal path to a nearby park (3.5 miles roundtrip - holla!) and played catch and hit some whiffle balls with Troy. 

note: after yesterday's activities, i am so sore today. oh. my. gosh.

if you knew me before my stroke, you would know i loved playing softball, and consequently, it is one of the things i miss the very most. my right arm gets really tight with any fast movements, so throwing is tough. but i can do it! not in the same way and not as far or accurate, but i can do it. and i am thankful! 

(my right leg also gets displeased with fast movements/exertion, hence the shaking and losses of balance.)

even though quite a lot of time has passed since my months doing hardcore therapy, my recovery process has not stopped -- nor will it ever if i have my way! recovery after a neurological injury is a lifelong process. there is rarely an end. working as an occupational therapy practitioner in a neuro rehab clinic, i have seen this knowledge come as a shock to a lot of my patients and their families. in our culture, i think we are used to having time frames provided to us my doctors: wear the cast for 6 weeks. take this medication for 10 days. avoid heavy lifting for 2 months. with recovery from neurological issues, we don't get an end date. recovery just becomes another part of everyday life.

in the past year, there have been some standout moments in my recovery that i think are worth sharing. let's review, shall we?

1. i started working as an occupational therapy assistant at SWAN Rehab in Phoenix a little over a year ago. most of my patients are stroke survivors like me. i help them return to independence -- just as my therapists did for me. i truly love what i do! as this is my first full time job since the stroke, it has been a challenge to maintain the 40-60 hour/week pace, both physically and mentally. my job is incredibly physical already, and then managing my balance, strength and muscle tone issues on top of that makes for a very tired body at the end of the day. (napping at 6 p.m. is ok, right?) it has also been difficult to manage my anxiety, which has increased so much since the stroke. but i am thankful to have a job that i love and to BE ABLE to work! every morning i thank God for that.
   


2. i got an adult trike! after looking around for a while (those things ain't cheap!), we found a winner on Craigslist. Troy created a strapping mechanism to keep my right foot on the pedal and also built a platform on the back so he can bum a ride. i had tried to ride a 2-wheeler a couple years ago but decided a trike was much safer for me balance-wise. i love it!
   


3. this one is a biggie. in April, i was able to get a Bioness L300 unit to help me walk. basically, i wear it on my leg and it provides electrical stimulation to the nerves that are not getting signals from my brain. the stim brings my ankle up and out so i can walk without my AFO (the black brace i always wore). getting the Bioness was a miracle in itself as i had attempted to get it through insurance before and was denied, and we didn't have $6k lying around to buy it. i tried again to get it through my new insurance, and they paid for EVERYTHING! i was apparently the first person to be approved for the device through my insurance company. such a blessing! so now, i have the option of wearing my AFO or the Bioness. that sentence can also read: so now, i have the option of wearing different sized, unstylish shoes or wearing cute shoes that are the same size. :) 
   


oh yeah, i also did a news story for Bioness. you can watch it here to see how i walk with and without it on. technology rocks!


4. back in June, Troy and i made a visit to the site of my stroke -- Snowbowl in Flagstaff, AZ -- for the first time since my stroke. i had attempted to visit on one other occasion but couldn't bring myself to go any further than the base of the mountain. we made the trip in June because we were planning to take a flight and i wanted to make sure ahead of time that my brain wasn't going to explode due to elevation. i thought i would be ok going back to the start of it all; it had been more than 3 years, after all. boy was i wrong! it was really, really tough. there were a few times i almost turned around. sitting where i sat when my body started to lose all movement and feeling was surreal and more frightening than i had anticipated. i'm really glad i went, but i have no need to go back for a while. :)
   


5. speaking of that June flight, it was the first time i flew since my stroke. i had avoided flying because i was worried that the change in elevation would cause another stroke, even though the doctors were uncertain if elevation was a factor in the tumor rupturing. i was nervous for most of the flight, but the trip Troy and i took to Cancun was so worth it! we has such a great belated honeymoon. i even boarded another plane a couple months later to go to Colorado for my friends' wedding. glad those first flights are done, and even more glad my brain behaved!

   

   on the plane. there's no going back now!

   
   
   
   
   

   

   
   



6. i French braided my hair for the first time. ok, so next to the other milestones, this one might seem pretty inconsequential. it was special to me, though, because i used to be able to do my hair in all kinds of styles, including braids. while my right arm/hand works well when my arms are around waist- or chest-height, raising them over my head (like in braiding) is harder. i sat on the couch where i could prop my arm up while i braided. it's a start!
   


7. this is another huge one for me. are you ready?!! *drumroll sound*…I RAN FOR THE FIRST TIME! ok, so it was more like a canter. or maybe a trot. but it felt so good (and was exhausting!). i wore the Bioness and was harnessed above the treadmill. my right leg lagged a little, but i never tripped. thanks to my co-worker, Mark, who provided his PT skills to help me meet this goal.

well, there you have it! writing this post was a great opportunity to reflect on the past year and to realize the progress i am still making. i am still so thankful for all the prayers, love and support that have been given to me throughout this journey. to all those who have prayed for me, provided encouragement and/or cheered me on: i am forever indebted to you. you have impacted my life more than you will ever know!

and to Troy, who, apart from me, is the only one who knows the extent of my daily struggles and triumphs: thank you for being my safe place and my biggest supporter. thank you for reminding me to use Righty and for catching me when i fall (literally and figuratively). you are my biggest blessing and i am so glad to be alive so i can live life with you.

[past] flagstaff

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.