Falling Down

On Friday, I fell down twice; once when my adventure partner was home and once when he was not.  The second time, I spilled the drink I was carrying in my hands all over myself, and had to change clothes.  The first time, I was outside doing some yard work, so it sort of looked like I had taken a seat in the grass.  Two years ago, when first returning home from the hospital, I didn’t anticipate my first fall would be my last day to fall down.  I am ever thankful that my PTs and OTs have taught me how to get myself back up, which, even if someone is around me, I insist on doing by myself.

I wrote the above paragraph two years ago and saved it to my draft posts.  It recently caught my attention for many reasons.  First, it is indeed quite true that I have fallen down many times since the above paragraph was written.  Second, last week I wore a bandage on my chin due to my most recent fall.  For the record, this was the only time any of my falls have resulted in bleeding.

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I apologize for the grossness. This was my chin right after the fall. Ouch!

Two years ago, during my first few falls, a student asked me what it feels like for me to fall.  I spoke about my foot drop issue, shared my hope for continued recovery, and realized that I haven’t fully shared what it is like for me to fall.  So, I thought I would take a moment now (yes, two years later) to do just that, because I imagine that watching me fall from the outside is much different than what I experience inside.

First, I fall because I have foot drop, not because I have balance issues.  Gone are the days, thank goodness, of me getting sick from standing up (Yes, this happened January-February, 2015).  Also gone are the days of me continually walking into the right wall even when I don’t mean to do so (darn left neglect…big moments folks!).  🙂  For the most part, I am usually good about lifting my leg up high enough to be able to take a step.  However, if I’ve been sitting for awhile, am tired, or I get lost in thinking about something else instead of paying attention to lifting my leg up…I fall.

Second, I fall because I am carrying too many items (I use a backpack like a purse now), or forget that I cannot do the exact thing my brain is thinking I can do.  I walk only around 4,000 steps a day, so I need to be stingy about how I use my steps.  For example, I struggle walking through doors that self-close quickly and open from the right side.  It gets frustrating, and sometimes boring, to have to consciously think about walking.  The upside is that I’m much more aware of my surroundings than most people, because I’m always on the lookout for obstacles I might find challenging, as well as how to avoid or overcome them.

Backpack

My go with me everywhere backpack.

Third, I am usually fully aware when I’m going to fall and always try to land on my butt; admittedly, it has the most padding. 😉

Fourth, when I fall, especially if it is on my left side, it feels as though I’m falling into a hole with no bottom until I hit the ground.  It is a sort of “lighter than air” feeling and seems as if there is nothing I can do about it.  About a year ago, when I knew I was going down because I had sat up and turned too quickly, and this time I had too much forward momentum to fall on my butt, I braced myself for the moment of impact and was surprised to discover that my left foot was in a spot that helped me to stay on my feet.  This was a pleasant discovery and something that I told myself I would repeat if it produced positive recovery results…alas, it has not, or at least not in the same way that it did that day.

Finally, I know that bumps and bruises for stroke survivors are not good ideas.  Don’t worry, my blood is drawn fairly frequently to make sure that my INR is still within range.  Also, I pay a lot of attention to any bruises I do receive. I do so because, even though I have a heads up that I’m going to fall, I still find myself scared after I fall. I do not need my life explosion occurring twice.

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Another School Year Started

I took a break from personally blogging this summer, and need to get back into the swing of doing it at least once a month. For these reasons, I thought I would post about my summer and the beginning of the school year.

For starters, the first week of the new school year is over.  Woo hoo, 🙂 I did it!  I will say that I notice my energy went up over the summer, which is exciting.  Still, I am quite exhausted in the evenings and have spent a good bit of time sleeping this weekend.

I am still going to physical therapy at the local hospital to work on my continued recovery.  Yes, this means that I’m continuing to also improve physically too.  I do still have foot drop, but I have become much stronger, the spasticity has decreased, and I can walk faster.  One of my goals is to be able to run, and I am happy to say that I got to a speed of 3.5 on the treadmill (which is the lowest speed for running), and I can do that for just over 3 minutes.  Yes, to do this I wear a harness that is attached to the ceiling in case I fall, but I can still do it!

This summer I worked again on the book I’m writing about my January 2015 life explosion (as I now call it). I finished another draft of it in early August, and am having someone edit it for me now. I actually think it isn’t too bad, and might possibly be something folks want to read. I’ve kept it focused on the patient perspective of everything I’ve been through. I’m keeping my fingers crossed that it is worthwhile.

Third, I did get to go to my favorite place, Lake Vermilion, MN, this summer for two weeks. This year I had a chance to spend time with family, and I swam in the lake. I tried out a pool later in the summer too. FYI, swimming is very hard, but also very enjoyable. A special moment was when my niece taught me to do all of the swimming moves she learned from her swim instructor when I told her that I was afraid to swim. Like a good student, I listened to her instructions.

I also taught a summer course, which was quite enjoyable, and I prepared for my fall semester courses.  Now that I have a better understanding of my disabilities, I was able to be more strategic in my planning.  All of this is to say that I feel as though I’m both improving and adjusting…hopefully the first year back was the hardest for this “new” body I inhabit.

It was great to see the students both in classes this week, as well as those in the Western 1st Generation Society (W1Gs) group.  I am very excited to say that all of the students in the group came back to WIU this fall, and are prepared for the Activities Fair next week.  I anticipate it will be a great year thanks to all of them too!

Finally, no great year would be complete without a new dog.  He is a 5 year old PomChi mix that we adopted from the McDonough County Animal Shelter.  I know that not everyone is a dog person, but it is pretty awesome to have something SO EXCITED to great me each time I come home.  Dogs are the best! 🙂

Optimus Prime our 5 year old ChiPom mix.

Optimus Prime our 5 year old ChiPom mix.

Foot Drop or Drop Foot

It does not matter which way you phrase it, as both are used in the medical community.  If you desire to learn more about the medical reasons for this condition, click here, as this post will not be one in which the condition sounds distant and easily solvable because I have foot drop.

I’ve spent time thinking about foot drop lately, although I’m not quite sure I can explain fully why. Perhaps it is due to the spring weather that is causing me to want to be outdoors, or perhaps it is due to the fact that last spring I was thinking about foot drop too.  I am a believer in such energy connections existing in the world. No matter the reason, it has been on my mind, and the following are some descriptions as to what my experience is like:

Spring is here!

Spring is here!

First, my left foot is freezing most of the time, however, this does not mean that it has no pulse.  In fact, it is quite the opposite.  The blood is moving around great!  🙂 Unfortunately, while my brain is doing a good job working with the rest of my body to maintain a regular temperature, my left foot has gone rogue…and from time to time is so painful that I think it is trying to secede from the union of my body.  When it is not freezing, it is sometimes a lovely burning feeling, that can be so painful that I have to remove my shoe or brace right away to cool it down. In between these two temperatures are phases of it feeling as though it is one giant bruise, as if I’m getting a blister, or it has no feeling at all. I prefer the last option, if I have to choose.

Second, I can’t feel much of my leg from the left knee down…I only know that it feels heavier than my right leg.  I can also feel pressure, and the tips of my toes have gained a great suction ability of some sort to hold my leg in place if necessary (usually at night when I’m walking on our wood floor with socks on).  One might think this is a neat super power, but I assure you it is not and often leads to feeling the kind of pain that could be relieved if I could spread my toes, but I cannot…so that stinks.

Evidence of my high school coolness

Evidence of my high school coolness

Third, spastic is not just a term I used in the early 1990s when I was a teenager and was trying to describe how someone was acting. (I know, I was cool.  🙂 ) It is a term that describes my leg when it is refusing to do what I want it to do.  In these moments, it pouts by going rigid with my foot wanting to roll inward even with a shoe on my foot.  If I am standing, which is usually the case (because I’m often turning too quickly, I’m tired, or I’m walking down an incline without thinking about it) when this happens, you can imagine how challenging it is, and I have to stop walking.   The only way I’ve found to resolve this issue is to consciously tell my leg to calm down (I use a stern tone, and give it a good side-eyed glare).  If that doesn’t work, I bend over to apply pressure to my ankle area.  The upside is that there is no feeling other than stiffness when this happens…it just doesn’t look “pretty”.

Fourth, when I wake up in the morning, it often feels as though my left leg is hatching from an egg.  As if I’ve been curled up all night with my leg tucked in tightly (which, I assure you, has not occurred) and moving it is a new experience that is both refreshing, and irritating at the same time.  Another way to describe it is that it feels twisted, as though it is the leg of a table, and needs one more turn around before it evens out the table top.

I use a quad cane.

I recommend the quad cane.

Fifth, I consciously think about walking with almost every step that I take, as well as the weight distribution of my entire body.  Yes, I am grateful that I am able to walk, and I know that I’ve improved a lot..however, in my mind, I look as though I’m impersonating a toddler learning how to walk, and get tired from having to think about lifting my leg, shifting my weight around, as well as assessing where each chair, table, and other people are walking, so that I can stay clear and/or have something safe to hold onto if necessary.  (This is where the cane comes into play, as most folks stay clear of it.)

2016 Orange is the New Purple

One year ago today, I drove myself to McDonough District Hospital in Macomb, Illinois, because I was struggling to breathe.  Little did I know I would return home 46 days later after experiencing a pulmonary embolism, two seizures, two strokes, and cardiac arrest for 56 minutes within a two day period. I still find myself stunned that I’m alive. To say I had a challenging year would be an understatement. As the year went on, I admit that my mind was increasingly full of questions regarding why I “woke up” (which is how I phrase it) and I felt that I was deeply learning about faith and trust.

hope-sunSo, when the 2016 began this past week, I couldn’t help but think that this year had to be different.  My approach was to begin doing again the behaviors that helped me to successfully make it through 2015:

journaling, making to do lists, breaking big jobs up into smaller projects

One item I knew that I needed to add to my list was to look for messages of hope being sent my way.  Yes, such messages were probably always there, but I had lost track of seeing them by the end of 2015 (when you have to remember to breathe at the same time that you bend your leg during physical therapy, it can be easy to forget to look for hope).  This year, I not only wanted to see hope, but I wUO TCU Alamo Bowl 1_1451686431133_20735_ver1.0anted to acknowledge the messages of hope even if it meant talking out loud to myself so that I would hear the reminder.  One message of hope, came my way on January 2, 2016, when my undergraduate alma mater, TCU, played in the Alamo Bowl.

During their record setting comeback, I couldn’t help but notice connections to my story over the past year, all pointing in the direction of continuing to persist in the face of a situation in which many would have already given up.

I see you hope.

For example, coach Gary Patterson attributed his change in wardrobe to assisting the horned frogs in their victory over the ducks.  The ironic part is that the shirt he changed into was a purple shirt.  Purple, which is one of the two colors of Western Illinois University where I currently work. Purple, is the color faculty, staff, and students are encourage to wear on Fridays.  One might think that 2013-banner-thinkpurplepurple is my favorite color, but it is not.

For numerous reason, orange is my favorite color (hang in there…I promise there is a connection), and last spring when I was at OSF-Peoria my younger sister asked if she could be my social media PR manager (arguably this is a part of what she does for a living, so it was good professional experience and I could not do it).  Little did I know, she would start a social media frenzy almost all of which related to the color orange.

 #orangenailsforsarah on Facebook

#orangenailsforsarah on Facebook

Videos were created for me. One video was created for me by some former students, and several from various country music artists (for example, Brett Eldridge and Montgomery Gentry).

#orangenailsforsarah on Facebook

#orangenailsforsarah on Facebook

This resulted in me thinking that everyone on Facebook was wearing orange just for me.  (Yes, I am now aware that it was due to my news feed being comprised of my friends and family…please see above life explosion as to why I might have been a bit slow to realize it. 🙂 )  Regardless, having orange all around me worked, and I dug deep to find my motivation to believe that I could walk again.

I could not stand without the help of this machine.

I could not stand without the help of this machine. It is hard to see, but please note that I have on an orange top and purple bottoms.

It even resulted in:

#DQstyle

So, there was Gary Patterson on January 2, 2016, reminding me that all my friends and family were still wearing orange for me.

I see you hope.

And then there was Bram Kohlhausen (TCU’s back up quarterback) and his family. Not sure how many folks saw Dash Kohlhausen’s tweet “Special thanks to the #oregonducks fan who sold me his sideline pass and made moment possible @WinTheDay”.  I am not sure who @WinTheDay is, but I couldn’t help but see the connection between@WinTheDay and #winthisday, which is a hashtag and motto that the family of another patient, Niko, created as a motto for his recovery.  Niko, a 16-year old high school football player, happened to have a brain aneurysm and be in Peoria at the same time as me. (He also happened to at the time like the Oregon ducks…I’m trying to recruit him to WIU.)

I see you hope.

And then there is the story of the triple overtime, which resonates with the theme of persistence rising out of Bram Kohlhausen’s own story of playing college football.  Messages of horned frogs not ever giving up, and believing the impossible were suddenly all over my news feed.  This time the message was quite clear:

AND 

#hornedfrogstylewhich is exactly my plan for 2016!

 

Health Update: Thank you to my OSF-Peoria Caregivers

I don’t usually use my blog to post updates about my health, but I thought I would do so this week.  That way there is a more permanent thank you out there in the Internet world for those who helped me begin my recovery journey at OSF-Peoria.

In case folks didn’t know, this past week was Rehabilitation Awareness Week at OSF-Peoria. I received an invitation to attend after being identified as an all-star rehabilitation patient by my therapists.  It was a huge honor for me to receive such a invitation, and I want to say thank you to my adventure partner, John Nathan, for taking me.

Attending meant having an opportunity to thank everyone at OSF-Peoria who helped me during my first two months post health issues. It was a wonderful event too.  Great job to the folks who put it together!  Each day, I’m thankful to be here to have a chance to say thank you.  Some of you might know that I’m working on a book about my experience, but I anticipate it being a bit before I get it to a publishable quality. Still, I do have a draft of the whole book written, and a list of edits to make to it.  Thus, in place of having a book to share with the world in which I have written my thank you to all who were a part of my recovery, I thought I would post some photos from the rehab celebration.

My PT and OT Team. There were many more therapists that I worked with, but these two put up with me the most. ;)

My PT and OT Team. There were many more therapists that I worked with, but these two put up with me the most. 😉

Me and Niko meeting up again after our time in rehab together.

Me and Niko meeting up again after our time in rehab together.

 

Me, Heather, and Niko laughing...probably at something funny Niko said. :)

Me, Heather, and Niko laughing…probably at something funny Niko said. 🙂

 

 

 

 

 

 

 

 

 

The contraption that I have hanging around my neck is a remote to my Bioness, which is an electrical stimulation unit that activates my peroneal nerve that is causing my foot drop. I’ve been using it for about two months now, and it has helped me improve in my walking. It was fun to be with folks who were excited that I have it.  Of course, I was instantly SUPER nervous to walk, so didn’t walk without my cane until after everyone left, and then I let John take this video of me.

Thank you, thank you, OSF-Peoria!

Visiting My Relaxing Place

Last week, I took my first approved trip since my health issues earlier this year. I was so excited, as there was only one destination that I wanted to visit in order to take a break, Lake Vermilion, MN. The location where John and I were married, and where my family has a cabin.  Last summer I spent approximately 5.5 weeks there and felt very refreshed for the new school year.  This year, I was hoping to find peace and perspective before returning to therapy and the start of the school year in the fall.  Despite my excitement, I also admit that I quite nervous.  I knew that I would not be able to do many of the tasks I had done in the past.  Activities such as: taking walks, laying out near the water, and helping take down fallen branches were not endeavors I anticipated being able to participate in.  The whole week prior, I kept thinking to myself, “if these were the things I knew I would struggle with, what other things might I discover I could no longer do?”

The week of the trip, started with John and I attending a wedding for one of my former students.  It was great fun! IMG_1136Yes, it is true, I learned I really can’t dance now…except slow dance, which is more just me swaying back and forth, and the buffet line was something John had to help me with (I assure you, that he had no problem helping me with food). Despite these issues, I believe I appreciated more than ever before the time spent with good friends celebrating the love of two people.  Valuing time spent with others is something that has become even more important to me since January. John kept asking me if I was tired, and even when I became tired, I didn’t want to leave because I knew that the moment could not be captured again.

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The next day, John and I were off to northern Minnesota.  We get to Lake Vermilion by going through Wisconsin, which is a much prettier state than I had ever realized.

Crossing from Wisconsin into Minnesota with a view of Lake Superior

Crossing from Wisconsin into Minnesota with a view of Lake Superior

One of my favorite parts about going north during the summer is that you get to experience spring all over again.

Haven’t a clue what these flowers are, but I believe they were orange just for me!

I spent a lot of time snuggling with Lucy, which is always wonderful.

Best. Dog. Ever.

Best. Dog. Ever.

 

We often rested at the same time.

We often rested at the same time.

This was often the view I had when she sat close to me.

This was often the view I had when she sat close to me.

Again, Best. Dog. Ever.

Again, Best. Dog. Ever.

And playing games with my family.

I won more games than John, which is really all that matters. ;)

I won more games than John, which is really all that matters.

We even put a screened tent up, so that I could go outside to read and take naps.  It was wonderful.

Or, rather, my mom and John put up a tent for me to use. Thank you, thank you.

Or, rather, my mom and John put up a tent for me to use. Thank you, thank you.

And this was my view.

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Something I noticed is that due to my new environment, I could do several things one day and the next I would need to sleep quite a bit. Biologically, I knew this made sense, as I was taking in new information, and my brain was rebuilding those connections, but I didn’t expect to be so tired just from spending time walking down to our dock and back up the hill.

The day before we decided to leave, my uncle took us out on a boat ride. It was so wonderful! And, quite funny too.  🙂 Everyone kept asking me if I knew how to swim and if I could go into the water with my leg the way that it is. I found it humorous, as I’ve been swimming since I was a kid, and I haven’t forgotten. I responded by telling them that I wasn’t going to start gulping water if I did find my way into the water. This response, turned the conversation toward a boat crash. What if the boat crashed, nobody could get to me, and I would have to tread water for 20 minutes? Mind you, our boat is not the only boat on the lake, and it was July 4th weekend, so there was a decent amount of traffic. Thus, I didn’t anticipate having to wait 20 minutes for help from another boat. Furthermore, everyone on the boat knew how to swim, and I couldn’t imagine a crash in which I survived and none of them did, so I knew they would help me if I needed it. It was clear, however, that the only way I was going to be allowed to go on the boat trip would be if I wore a life vest, which I haven’t worn in forever.  So, I agreed, and my mom helped to snap me into it.

My best selfie with a life vest on.

My best selfie with a life vest on.

And the view of the lake from the back of the boat when we started the trip.

This was my view just to get us around the dock.

This was my view just to get us around the dock.

We started heading to new places and my view got better.

We started heading to new places and my view got better.

The view of the John at the front of the boat.

John's seat up front.

John’s seat up front.

We first went to check out the eagles that we can see from our dock and cabin flying around, and calling to each other.

Do you see the eagle?

Do you see the eagle?

How about now?

How about now?

We then boated around a bit, enjoying the beautiful lake before stopping at Moosebirds for an ice cream cone, and eventually heading back to the cabin.

I had the best sleep while I was at the cabin, and have struggled a bit sleeping since my return. I’m not sure that I’m necessarily surprised by this, as Lake Vermilion was the location I went to in my head whenever someone (nurse, family member, friend, etc.) was trying to help calm me down while I was in the hospital.

I cried when I had to leave at the end of the week. Both tears of happiness and sorrow. Sorrow because I don’t anticipate I will get to go there again this year, and because I recognized how much I took for granted in the past by having two functioning legs.  Happiness because I did it. I went to Lake Vermilion, and enjoyed it more than I probably have ever enjoyed it before. Yes, it was relaxing to be in the great outdoors beyond my yard and the town of Macomb, but it was extra relaxing because I was with loving family.  They helped to make my time special, and just being around them helped to restore my motivation to keep improving.  I hope next year to go with even more of my family members.

Just a few more photos of the lake from the boat.

Just a few more photos of the lake from the boat.

 

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I did it. 🙂

My Left Foot

My left ankle might not ever move again on my command, and I might not be able to spread apart or wiggle my toes.  I have foot drop.

This is a terrifying thought to me for many reasons, as well as a fact that I might need to come to accept.  Yes, I do realize that it hasn’t even been a full four months (it will be on May 6), since my life exploded (a PE, two seizures, two strokes, and cardiac arrest for an hour) in January.  And, I do know that some people get movement back a year later, and some times even two years later.  So, please don’t hear that I am giving up hope because I am not.

I have hope. hope

But, I also want to not have my expectations up too high because stroke depression is real and I don’t want to slide into it.  After all, strokes are the leading cause of long term disabilities in the United States.

I am working hard every day to accept what has happened to me, and appreciate that I am still here and still have a lot going for me.  This all means that I have a tug-of-war post-copygoing on inside of me and it is not easy.  Part of me is focused on having hope, and part of me is working on accepting what has happened to me.  I’ve been encouraged to just focus on having hope, and I try.  It is just that it is much easier for someone to say that to me than for me to do.

I struggle daily with questions such as:

It has been almost four months, why am I not back to normal? 

All of the rest of my leg has woken up, so why is my foot so insistent on sleeping?

What else haven’t we tried that we can try to get it going?

Did it just move, or did I imagine it?

There are several ways that I work through my tug-of-war:

1. I am quite protective of who I surround myself with because I need to keep having hope.  I can’t spend time being around thoughts and feelings that are negative because it is too easy for me to see my situation as negative.  It isn’t that I don’t share with those who are near me how I am feeling, which is often that I am sad, but I know that I need others to respond positively (which often means just being with me) even if I am crying.

2. I try hard to keep moving.  My older sister said to me when I first woke up in the hospital, that the best thing I could do for my recovery is to keep moving.  I am not sure I fully understood what that meant until recently, and I hear her voice in my head each time I want to just be lazy and do nothing.  I’ve also recently been exploring yoga for foot drop, although I’m terrible at it–still, I am determined.

3. I journal about my feelings related to my left leg.  I have never really spent time journaling about one specific part of my physical body before, but it makes sense for me to do so now.  Yes, my left foot and my need to wear an AFO (ankle and foot orthotic) means that I can’t be outside like I used to, but that doesn’t mean that I can’t go outside. I try to become fascinated by my leg, and notice if it shakes and consider why that might be (am I nervous, etc).  I want my left leg to remember that it is a part of my body, and needs to listen to my brain again.

4. I process through in my mind how much privilege I had when I didn’t have to think about walking, and the fact that I might be able to make a full recovery is in itself another privilege.  I still have many things going for me even if I have a physical disability the rest of my life, so I will be okay if this is “as good as it gets”.

5. I can make a cane look cool…so, who cares if I have to use it the rest of my life.  It helps remind me to stand taller, which is good for my posture.

Still…I really want my left foot to wake up.  064151-high-resolution-dark-blue-denim-jeans-icon-people-things-foot-left-ps