life has been rather hectic lately, but i would be remiss if i didn't write a post today -- the one-year anniversary of my stroke. not a day goes by that i don't think of my time in the hospital, of the support and blessings i have received or how incredibly happy i am to be alive. every February 21 will be a holiday for me!
if you're like me, you're thinking, "only one year?!" in many ways, it feels like it has been longer than 365 days, but i think that happens when so much takes place during a period of time. since i haven't posted in a while, i thought i'd give an update on my recovery and the goings-on in my life.
if i had to give a percentage of the amount i have recovered, i would probably say 60% (if it's a good day! ). my arm and hand are doing remarkably well -- so much so that my therapists and doctors are surprised at their progress. from my arm down, i can function pretty close to how i could prior to my brain fart. how 'bout that, dr. brain surgeon who never said i'd regain my fine motor skills? :] i used to be bummed that my arm/hand were recovering quicker than my leg/foot, but my occupational therapist has reminded me multiple times that being able to properly use my upper limb is more crucial to daily life than the opposite alternative. i have come to agree! i can cook, do crafts, write, type, have thumb wars, etc., and i have even been told on multiple occasions that i have a firm handshake…just like old times!
from my elbow up, things are a bit more sketchy. i have quite a bit of tone/spasticity still hanging around in my biceps, shoulder, traps and so forth. this makes my movements less than smooth, especially when i do anything that requires me to lift my arm. when i am cold, nervous, stressed or sick, the tone increases. i have to be sure to wear a jacket when it's chilly out, otherwise my arm will curl up and in and get stiff. and, you know how babies startle easily? same here. anytime there's a loud noise or some kind of surprise, my arm jumps on its own. this is funny only half of the time.
now onto my leg. well, mr. leg is stubborn, but i will break him down at some point! i have some crazy tone in my quad and around my calf. the tone around the calf area makes my ankle turn in severely and makes it really hard for me -- or anyone else, for that matter -- to flex my ankle up (dorsiflex). seriously, it's like moving cement sometimes. then, if i make it a point to relax, the tone releases a bit. the tone in my quad makes my leg spasm when i'm cold, nervous, stressed or sick. the worst part of this is that i can no longer hide when i'm nervous! try telling somebody you aren't nervous when your leg is vibrating as you walk. it's just not convincing.
i still use a brace (AFO) to walk. it's awesome and i don't know how i'd function without it. i can curl my toes if i have something pressing up against my foot (again, like a baby). i have been using electrical stimulation to help strengthen and retrain my evertor muscles on the outside of my leg so that i can move my foot outward. because of it, i can now move my foot outward on my own a few times, but only if i am relaxed. if not, the tone kicks in and my foot pivots inward instead. according to my therapists, i can slightly plantarflex -- aka push my foot down. i can't do it well enough to notice it myself, though.
with the New Year came a new set of therapy visits from my insurance. hooray! toward the last part of 2011, i was paying for therapy out of pocket (thanks to a very benevolent grandfather) and doing most of my exercises at home. since moving up to Tempe at the end of January, i have been to a new therapist twice. his initial evaluation was rather discouraging because it highlighted all the things i still can't do or still need to work on. it went something like...
"oh, your gait pattern is flawed. you are expending twice the energy because your walk is inefficient. your knee should be straighter when you walk. wow, your tone is really strong! can you move your ankle out at all? oh, nope." and on and on.
it's not like this guy was rude about his assessment findings; it's just that i hated hearing all the negative feedback all at once. most of the time, i try to focus on the things i can do, especially after not being able to move my right side at all, so the evaluation was a rude awakening to how much work is still left. while tough to swallow, i am glad this new therapist has recognized areas where i need to improve and is eager to help me get there!
DRUGS (the good kind)
i take a muscle relaxer called Baclofen three times per day to help control my tone. being that it is a muscle relaxer, it relaxes the rest of me, too. if you stick me in a car or on a couch with nothing to do, i will invariably fall asleep. i need naps pretty often (like a baby!) to combat the effects of the medicine, so i am nervous about how that will all work out when i have less time to snooze. the medicine also makes me shaky and hungry if i don't eat and drink often. thus, i also need frequent snacks (baby!).
i recently completed 12 [very expensive] hours of training on a left-foot accelerator. since my right leg isn't healed enough yet, the only option i had to be able to drive was using a gas pedal positioned to the left of the brake. i am waiting on the DMV to give me a road test, and if i pass, i will be given a restricted license -- meaning i can only operate a vehicle with the proper adaptive equipment. i am soooooo looking forward to driving again! Troy is, too, since he is the one who has to take me everywhere. ev-er-y-where. he says i will have to drive us around for six months straight once i get my license. :]
i'm also nervous to drive with the new equipment. apparently, left-foot accelerators are really dangerous and aren't prescribed very often. after going through the training, i can see why! from a very young age, we all learn to slam on the left pedal when we need to stop suddenly. my left-most pedal is now the accelerator. eek! let's all hope i don't kill myself.
as of December, my brain still has a clean bill of health! the possibility of the tumor recurring scares me even more than the possibility of always having stroke symptoms, so i was incredibly thankful to hear the good news from my surgeon. i will go back in May for another MRI. if that one is clear, i will do an MRI only once a year instead of twice. i am still being followed by a cancer doctor. i see her every six months and will do so for five years, just to be sure. she takes my blood and feels my glands at each visit. it's comforting to know my health is being closely monitored.
SPIRITS (not the boozy kind)
all in all, my spirits are pretty high! some days are better than others, but that's the same for all of us. occasionally, especially on days when i have a harder time moving, i think about all the things i miss or worry about: what if something else is wrong with my body? why do i feel weird today? (this is a common one since i am hyper-aware of every aspect of my body.) what if the tumor comes back and i die and leave Troy behind? what if i never can play softball or act again? i wish i could go on hikes with Troy. how am i ever going to be a mother if i can't balance well or hold things with my right arm? i wish i was healthy like everybody else my age and didn't need to spend so much money on medical expenses. how will i pay for them all?
after counting my blessings -- and normally a pep talk from Troy -- i do a good job snapping out of these negativity ruts. i have accepted that my life will be different than i expected, but i have also not given up hope that i will be healed.
so, what's next? in short, i plan on year #2 being wonderful! i am marrying the best man i have ever met on February 29, and we will throw a big shindig for all of our family and friends the next day. (i can't believe it's actually going to happen. i have dreamed about marrying Troy for six years, people!) we will live in an apartment in Mesa. since we are both currently unemployed (good for wedding planning, bad for anything else), we will do some major job searching right away. in May, i will start a 18-month Certified Occupational Therapist Assistant (COTA) program at Pima Medical Institute. i hope i can use my experiences as a patient to become an effective therapist. Troy is considering returning to school, too, so we will soon be introduced to the joys of student loans!
as i reflect on this last year, there is so much to be thankful for. i am humbled by my blessings and by the support and love showered on me. please keep me in your prayers. i have improved so much, but the road ahead is still very long. i can use all the prayers and faith i can get!
here's to better health, continued progress and lots of love in the next 365 days. :]