Well, happy re-birthday to me! My actual birthday is exactly one month from today (47!), but today, April 24, 2019, it has been 730 days since I had my stroke. Since my brain decided, for some still unknown reason, to bleed out. Since I could walk normally. Since I could run, climb a ladder, jump, do yoga, lift my arms up over my head, shave my armpits without so much damn work, since I could drive with my right foot, since I could bend my toes and crack the knuckles.
So much has changed in this 2 year period. But so much hasn’t either. I’m still “me”. I like to joke a lot, although I will NEVER again jokingly say that something is going to make me “stroke out”. I said it before my stroke often, but now that I’ve lived through it, I just can’t. In fact, I cringe when someone else says it. I know they absolutely don’t mean anything by it, I just know what it’s like to go through it. Not the actual stroke – I have no memory of that (other than going to to hospital by ambulance and getting in the ER room for just a few minutes. That’s it. A month of my life is completely wiped out.). But the 1 year and 11 months that followed the stroke, I sure do remember.
Just for informational purposes, my stroke was due to a bleed in my brain, hemorrhagic, (left thalamus). Other people have strokes due to blood clots. Those strokes, ischemic, are different from hemorrhagic strokes. Ischemic stroke patients may have the option of TPA, or clot busting, and the impact may be different. In fact, the same exact type of stroke in the same exact location of the brain can result in very different outcomes. The brain is so incredible and so hard to say “x + y = z” (“if you do this and this, you’ll get this”). There’s no magic formula or recipe to stroke recovery. Unfortunately. It’s so hard to hear someone say that they know someone who has had a stroke and recovered. I appreciate the information, I really do, but my type of stroke, in my part of the brain, on the day I had it, in my body is going to be different than another person. It’s true of any illness or disease – like when I had breast cancer I would think “my cancer is different because my body is different”.
I know I’ve come a LONG way in my recovery and yet I still have a ways to go. It’s so hard when you want your body to do something and it just can’t or won’t. I saw my dental hygienist for a cleaning recently and she commented on how much better my walking is. I think for the people I see every 6 months – dentist, endocrinologist, hair dresser – my recovery seems different at each visit. Living in it, day in and day out it seems like it doesn’t really change all that much. So, here’s where I am at this point in my recovery:
*I feel like I have a pretty strong core. I can stand on my left leg alone if I feel I’m getting off balance.
*I’m pretty balanced on my feet. Until something takes my attention or trips me up (literally and/or figuratively). That being said, I pretty much only go to PT, doctor appointments, and occasionally the grocery to grab a few things. I can’t travel by myself and I don’t think I can fly – I remember being in the hospital and being told “no flying”. I ONLY wear athletic shoes. I miss wearing sandals or even no shoes. But my feet just don’t want to cooperate enough for that yet.
*My right foot rotates – I say it rotates outward but my stroke doctor says it rotates inward (I tend to think of things backward like this – like I’ll ask Tony to turn the thermostat down, which to me means literally turning it down but to him means making it warmer. Now he’ll ask “do you mean make it warmer or cooler?” Lol!). Whatever, it’s just how my brain is wired I guess.
*My knee is hardly “snapping” at all. Around Christmas time I noticed my knee wasn’t snapping in the front of the kneecap like it had been, only in the back. The first few days in April I noticed the back of my knee isn’t really snapping so much. It’s still weak but I feel like it’s getting there. I’ve also been practicing walking in flats around the house. I wear athletic shoes ALL.THE.TIME. 365 days. I miss wearing flats and sandals. Plus we’ve got a wedding coming up in 2020 and I can’t be wearing athletic shoes to that! So I have 14 months to practice in non-athletic shoes.
–UPDATE: Ok I started this post a while ago and I’m glad I did because since I started writing it, my knee has gone from snap city, snapping with every step in the front and back on my knee, to only snapping in the back a few weeks ago, to NO FREAKING SNAPPING AT ALL on Easter Sunday. Praise God!!! My knee is feeling stronger than it has since before my stroke! My hip still snaps and my ankle is still weak, but I believe I’m getting there. Happy tears!!
*I have heel strike about 40% of the time. This is where your heel is the first part of your foot the land on the floor. The other 60% of the time is when my foot flops down and I “clomp” (I hate how noisy it is!). I’m working on making less noise though.
*I get Botox injections every three months in my forearm, lower leg, and foot. The spasticity is getting better. Not 100% yet but I notice the tightness isn’t as bad as prior rounds. Hoping to see that come to an end soon because the injections, especially in my foot and lower leg are SO damn painful.
*I can lift my arm about 40%-50% of the way upward but I can’t hold it (yet). I want SO badly to get my arm up and hold it here (mostly so I can shave my armpits easier!). When I started going to PT at Max in November, one of the exercises they had me doing is where the PT holds my arm and pulls it upward and then they slowly lower it down while holding it steady. They also do this moving my arm outward. After a few visits I remember asking “So, what exactly are you looking to have happen here?” because I felt/saw nothing. She said she was looking for my arm muscles to “kick in” and start controlling the decent. About 6 weeks ago, I started getting a little action with my arm muscles. So, hold your arm up out in front of you and slowly bring it down. My arm muscles start to kick in when my arm reaches about halfway down. Not a lot, but I think it’s still progress.
*I don’t have a lot of use of my right hand. I can move my thumb pretty well and my index finger ok. The other 3 fingers are just hanging out waiting for action. Botox kind of cuts the ability to move them though. It’s good because without the Botox, my fingers are pretty clenched, but with the Botox I don’t have hardly any movement. It’s a trade off right now.
*I’m going to physical therapy twice a week – first thing Tuesday’s and Thursday’s. I did take 2 weeks off in late March/early April. I needed it. After being in it nonstop sometimes I just need a break from it. It’s going well though. I can usually tell something little (it’s so little – like a slight difference) about every couple of weeks. I really like being at Max instead of where I was going before. The exercises are the same 18 or so that I always do but the order may change. At the old place it was literally something different during PT every single time but the same 5 exercises in the same exact order. It was opposite extremes and yet so boring.
*Still driving with my left foot. I want to get back to driving with my right but I don’t have the strength in my right foot or the reaction time I would need. I want to practice soon though.
That’s all I can think of at the moment. I’m sure there’s something I’m forgetting. When I met with Dr. Villanueva in April, 2018, he told me “where you are at the 2 year mark is about as recovered as you can expect to get” (his words exactly – I remember them OH SO CLEARLY). By that time I had already heard from other stroke patients who took longer than 2 years to recover. While I truly appreciate his surgical skills and the fact that he (and the Lord!) saved me, I have to disagree with his statement as to the max recovery period. I truly believe that I WILL make improvements beyond the 2 year mark. I don’t think there’s a time stamp or expiration date to my recovery. Maybe he doesn’t want to give anyone false hope, but I’d rather hear “We just don’t know what your brain will do, or how much you recover, or how long it may take. It’s up to you to do the hard work expecting that you’ll recover at some point. We just don’t know what that will look like.” I understand not wanting to give false hope to patients, but I needed to hear that it is possible if I work hard enough at it. I mean, otherwise I might as well hang up my hat and settle. And we all know, I’m not about to settle!
I have come to think of stroke recovery as a road map with no end. This “road” is bumpy, winding, sometimes as-flat-as-freaking Alabama, and you can’t see what’s ahead. But I absolutely do not think that mile marker 730 days is the end of my trip. Maybe it’s more of a rest stop, but this journey will continue. It sucks sometimes, but what can you do? Give up? Stop working at it? Nah, I’m not old enough to do that. I’ve got too many years ahead of me (God willing!).
Thankfully, I have talked to other stroke patients and read books written by stroke patients, and hearing that they recovered is positive to my mental health. I have spoken with a man who had the same kind of stroke as me (hemorrhagic) in the same part of the brain (left thalamus) and he has totally recovered. I don’t know if I’ll get back to 100%, but I’ll settle for 99% (lol!).
My advice to any other stroke survivors would be this:
*Be patient with yourself and rest when you can as often as you can. A brain injury requires a lot of rest. Work hard, but rest well.
*Take advantage of any and all physical and occupational therapy you can. If your insurance offers PT benefits, use them up!
*Remember: There are 7 days in a week so if you are going to PT 1 or 2 days a week, there are still 5 or 6 more days for you to work on something on your own. Take advantage of all the days you can!
*Stroke recovery is EXHAUSTING. I would get so tired from the littlest activity when I first got home from the hospital. My stamina is better now, but I still get wiped out quicker than before my stroke. I’m not joking that I watch Wheel of Fortune at 7:00 and start winding down after it’s over at 7:30. I’m usually asleep by 8:00.
*Set goals and make plans to meet them. Not necessarily “therapy” goals either.
*If you don’t have PT equipment at home and are cleared to do exercises at home, Amazon has EVERYTHING you could imagine you’d need from a PT/OT perspective. Check Pinterest or Google for ideas for exercises you can do on your on. For me, I can’t/won’t rely on my 2 PT days to fully recover. In a week of 168 hours (thank you, Google!) I go to PT about 3 hours a week. That’s less than like 2% at PT versus 98% not. There’s still so much more I can do at home on my own. Honestly, some days I’m just too wiped out to do much. But I aim to do the same exercises I do at PT at home 2 or 3 additional days. Some weeks I get there and some I don’t. It’s ok.
Personally, I know I’ve made good progress, but it’s not enough. I want “me” back. And I believe I’ll get there eventually. Or die trying! 😊 God willing! I trust God, and I believe that everything happens for a reason. There is purpose in all things. God is in control, not me.
Also, I have to share a picture of my iPhone calendar. Dr. Gormley does my Botox every 3 months and then I see him in his office a month after the injections. I had my last Botox on March 26, 2019, and a few days after I got a call with my follow up appointment. I was busy with work so I jotted the day and time on a post it. Later I went to enter the appointment in my iPhone calendar and realized that it is almost exactly 2 years after my stroke. Stroke was on April 24, 2017, around 12:00pm. My appointment is April 24, 2019 at 11:20am. Accident? I think not.
Here’s to another 365+ days of recovering! If you’ve made it to the end of this super long post, I’ll give you a dollar! (Just kidding! This is a joke my mom makes when she leaves a long voicemail because she knows I struggle listening to the whole thing! ADD probs. 😂)!
Also, I want to give an extra special thank you to my bFf, Jaime, for being available on 4/24/2017. She came right over to my house when I texted her that something wasn’t right. She stayed calm and called an ambulance and my husband after it was pretty apparent that she couldn’t get me to a hospital. She rode in the ambulance with me to Baptist Hospital, and stayed at the ER and then in the surgery waiting area with my husband and family. She is an insanely busy person, so that she was available at the exact time I needed her had to have been a God-thing. She came to visit me so frequently, even though I have no memory of her visits, she came and watched OITNB with me. It scares me to think what could have happened if she weren’t available to come over. I was home alone at the time and I lost memory of everything about 20-30 minutes after getting to the hospital. I probably would have not survived if she hadn’t been able to come when she did. I loved her before, but I love her even more now! I’m eternally grateful to her quick action and level head! 😘😘😘😘😘
❤️ Jenn
A photo walk through the last two years:
Jennifer Claspill 