Sunday, December 20, 2015

About me

I have recently become more aware that I can seem hollow to people just meeting me. Maybe they are meeting me for the first time ever, or perhaps we are getting reacquainted for the first time in years.

I am unable to talk at all right now. Also, my face does not move like it used to. In fact, some medications cause my face to be paralyzed, making it impossible to even crook a smile. That makes all expressions kind of tricky.

I am here to tell you that my memory is intact. Probably annoyingly so. My intellect is the same, too. And I thought it was evidenced in my blog.

In short, I am sorry if I have misled anyone, but I still have a lot to say.

Sunday, December 13, 2015

Chicago

I was planning to write about something completely different, but this is more timely.

My birthday was in mid-November, and my sweet husband surprised me with a trip to Chicago and some other things I will talk about later. We used to go to Chicago all the time before I got sick. It’s a special place for us.

A trip to Chicago seems extravagant. For a birthday, I mean. I’m considering it a joint trip because Chris’ birthday was in early December. He agreed to it if he could go to our favorite place for breakfast. And so, it turned into a shared trip.

MIL had to tag along to help with me, and help she did. More on that later.

After a 2 ½ hour interstate closure, we finally made it. And my day was way less bad than the people involved in the crash.

We went to a museum. It closed before we were ready to leave, so I will reserve judgement. Except to say they closed awfully early.

On my actual birthday, I learned of my surprise. You see, I already knew we were going to a Copeland concert. What I didn’t know was there were V.I.P. passes. My aforementioned sweet husband got us one each. That meant we got to sit through an acoustic set, participate in a Q&A session, meet the band, get autographs and snap photos. Copeland is my favorite band ever in the whole, wide world. And the lead singer told me happy birthday before we had a chance to tell him. Because Chris told him on social media ahead of time.

Then came the actual concert. On the second floor. I should mention that the venue was in a building over 100 years old. No elevators. Lucky for me, there were some ramps and strong men involved. Once we were upstairs, we found there wouldn’t be a good spot for me to see the stage once it filled with people. Thankfully we were invited into the sound booth to watch the show. Even I could see from in there. The venue also accommodated my need for medication after I was in the building. Many thanks to my MIL for bringing them to the door for Chris to grab.

The rest of the show—and the trip, for that matter—went as planned.

I can still go to Chicago, but I now have different priorities than I did before.

Sunday, November 8, 2015

Quick update

My switch had been broken for an eternity. OK, it was only for a couple of weeks. I felt like I was cut off from the world, but BeExtraordinary/InvoTek fixed things right up. I honestly don’t know what I’d do if I didn’t have them. 
Whilst (I have always wanted to use that word) we are on the topic of technology, I have a version of the “barking dog” and it is every bit as wonderful as I expected. May I just say 3-D printers are awesome? Also, Be Extraordinary is pretty awesome. 
I just started physical and occupational therapies. There is even talk of a power wheelchair in OT. I am planning to start speech therapy very soon.
I was going to end there, but I thought I should mention that I was in the hospital again, but am out now. It was nothing too serious.

Sunday, October 11, 2015

Who I was: Part 4

I have really not been looking forward to this part of my story. It could be said that I have been procrastinating, even. But here goes. On March 11, 2012, I woke up like it was any other Sunday. I cleaned the winter debris from the backyard with Chris. I remember thinking how I never wanted to do that again. Not this way, though. I went inside, ate lunch and tried to nap. When I was unsuccessful, we decided to go shopping. Then we went to church that evening. I started feeling weird during the service and needed to leave early.

I stayed sick that night, though I don’t remember much. I do recall a lot of Googling (yes, I am aware that doctors prefer that patients don’t self-diagnose) and physically restraining my sweet husband who just wanted to call 911. Delaying a hospital visit is never a good idea for stroke patients. That’s why the letter “T” is in the acronym F.A.S.T. It stands for face, arms, speech and time. Time. That’s why I had Chris call 911 when my tongue went numb and my eyes became misaligned. If only the ambulance people and the emergency department staff would’ve picked up on what was happening to me. Note: I didn’t have meningitis. That’s what was suspected at first. There is a medication that can be given to stroke patients to prevent death or severe disability. The key is early intervention. I know I have said this before, but if you or someone you care about has a stroke, you want TPA—the clot-busting drug.

More stalling… Life was never the same. I know people say that, but it literally was different from that point forward. After I spent about a month in intensive care in Kansas City, I went to a rehab hospital in Nebraska for about three months. It was there we decided to sell our house. I wasn’t even finished decorating yet. 

Chris, like always, was my advocate in Nebraska; there was a steady stream of visitors. He also cold-emailed a lady about technology with my limited movement. At the time, by the way, I could only move my left foot. Now, I can move both feet and hands. In other words, every improvement has taken a long time. Now that I am back from my rabbit trail, the lady in Nebraska connected me with Be Extraordinary. I am really glad they have been willing and able to work with me.

After I left Nebraska, I lived in a nursing home in Johnson County, Kan., for seven long months. I have never had a more difficult time in my life. I will leave it at that.

I went home to a tiny apartment, also in Johnson County. I had never lived there, but it was home because Chris and Piper were there. Piper is our now blind geriatric Boston Terrier dog-daughter. We were happy there.

Then we moved back to Springfield to be closer to family. I am working on getting established with doctors. My first occupational and physical therapy appointments are this week. I met some nice neighbors this afternoon at the annual neighborhood picnic.

I guess what I’m saying is I am gradually settling in. I have nowhere to go but up.

This concludes my partial autobiography. Thanks for reading.

Here I am with my mother in Hawaii.

Here I am with my little brother in Mountain Grove.

Here I am in my sophomore yearbook from the Catholic high school.

Here I am at our wedding in 2004.



Here I am on the porch of our Kansas City home, Thanksgiving 2011.


Sunday, September 20, 2015

Who I was: Part 3

At some point, we were going to visit my brother and sister-in-law about one weekend a month in Kansas City. By the way, my brother didn’t turn out so bad.

Soon, Chris and I moved to KCMO. We lived with them for a couple months while we house hunted. A billion thanks to them. We were even on speaking terms when we moved into our newly-purchased 1925 craftsman in August 2011. We dreamed of remodeling the kitchen and the upstairs bathroom someday. 

Our home was close to the Country Club Plaza, Westport, Crown Center and downtown. We literally lived right around the corner from my brother and sister-in-law’s business. We even lived close to their house.

I secured work doing a job a lot like my old one. Only it was way lower-key. So did Chris. We were also pursuing participation in a mentorship organization and hoping to host international university students. We enjoyed having friends and family over for dinner. In short, I really liked my life. 

This concludes part three of my partial autobiography. To be continued.

Monday, August 31, 2015

Who I was: Part 2

For college, I decided to stay home and attend Pittsburg State University. During that time, I learned a few very important life lessons. For example, I ascertained that it is in poor taste to overcommit professionally. I also spent some time figuring out who I was.

Also during that time, my mother got sick again. I don’t talk about this much in passing, but I took a year off college, in part, to care for her. I also met a new friend during that time.

When I went back to college, I joined the university’s newspaper staff and eventually became an editor.

My new friend was Chris Wilson. I had completely forgotten about the transfer students, and one surprised me. He was friends with some people I had known for a very long time. After almost a year, Chris decided it would be OK for us to be a couple. I was obviously very patient then. Four short months later, we were engaged.

Only the months didn’t seem brief then. My mother’s health got progressively worse. We set the wedding date for almost five months later, hoping she could make it. Sadly, she didn’t.

Chris and I stayed in Pittsburg long enough for me to get my degree, then we were off to Springfield. At the time, my dad was living alone in Buffalo, Mo. He was by himself for the first time in about 30 years. Then he met a kind widow with no children of her own. Basically, there was more than enough room in her heart for a couple of kids, their significant others, grandpups and eventually grandchildren.

After about six years in Springfield, I finally found work where I thought I belonged: at a free clinic. 

Meanwhile, Chris and I traveled. And we ate. And we went to concerts.

This concludes part two of my partial autobiography. To be continued.

Sunday, August 9, 2015

Who I was: Part 1

Some of you knew me before I had a stroke, while others met me after or as a result. Anyway, it’s time for an autobiography. A partial one, that is. Because I am far from done.

I was born in Springfield, but my family lived in Mountain Grove, Mo. While there, I went to Hawaii and became a big sister. Life clearly wasn’t about me anymore. For a frame of reference, I was 3. We moved when I was 11, and to a town even smaller than Mountain Grove, Mo.: Mount Vernon, Mo. There isn’t even a Walmart. That’s how tiny it is.

Next, we relocated to Pittsburg, Kan. I was in eighth grade. When I toured the high school, it seemed so big. I decided the smaller made sense and went to the Catholic high school instead. Note: There is not an athletic bone in my body. Also note: I am not Catholic. Two big red flags. Both athleticism and religion were important. I transferred after my sophomore year. At Pittsburg High School (yes, the behemoth one), it wasn’t as important to have athletic prowess. I said not as important because, of course it was. It was, after all, high school.

I did OK, though, because of the wider variety of activities. For example, the newspaper. Credit for me even knowing I enjoy writing goes to my creative writing teacher in 10THgrade. The rest of high school was fine, though I spent some time being confused about life.

This concludes part one of my partial autobiography. To be continued.

Wednesday, July 1, 2015

Barking Dog

This warrants its own blog, but I have been working on another project. This has to do with the people at Be Extraordinary.

Several months ago, Chris and I were discussing how nice it would be to have a service dog who could alert people that I have something to say. Right now, I have to move my thumb up and down to get someone’s attention. Sometimes what I was going to say is no longer relevant. Also, I might forget. Additionally, sometimes people are unable to see my thumb moving to signal I have something to say. If only I had someone or something to make a sound for me...

Enter Be Extraordinary. Chris emailed them and they first thought I wanted to acquire a canine. No, Piper is quite enough for us now. Upon further review, they found I actually want a computer piece or a switch. The new item will be known as the “Barking Dog”. One day, three people from Be Extraordinary, along with two guys affiliated with the University of Arkansas (U of A), paid me a visit. They needed to see how my thumb and pinky would work with a variety of technologies. I am now officially part of the Rehabilitation Engineering Research Center onAugmentative and Alternative Communication (RERC on AAC). The “Barking Dog” also happens to be the thesis project for a grad student at U of A. What I really like is that this exercise might be helpful for others who are nonverbal. It should also help me write more efficiently. 

Also, I decided to take back control of my hair. Once I told MIL, she didn’t waste any time before she was looking online for salon options. I think I might have said “I am sick of not being blonde”. After that, I sent one of my caregivers to check it out for accessibility purposes. Things like that didn’t matter before, but do now. I went to the salon as a brunette and left as a blonde. It’s as if little pieces of me are gradually coming back.
Blondie and hubby enjoy an orange popsicle.
Additionally, we are in the midst of a kitchen remodeling project. Photos forthcoming.

Sunday, June 7, 2015

Master bathroom

Hey everyone,

Alison wanted me to post a few pictures of our finished master bathroom renovation. She designed the entire thing and it came together beautifully. Have a look!

Chris






Sunday, May 24, 2015

NOPW '15

I am late. For NOPW, that is. It is never too late to talk about stroke in young people. People who have no idea that life is about to change. To really change.
Know the classic signs: Face, Arms, Speech and Time—remember the acronym FAST. But do me a favor and look at the National Stroke Association website for a list of symptoms for women.
Before I was hospitalized, I spent the evening being nauseated. Later, I became dizzy and my tongue became numb. Chris says my eyes were misaligned. They still are. I’ve heard other young women talk about similar symptoms. 
The reason NOPW exists is to raise awareness of stroke in young people. So please know the symptoms, both FAST and those from the National Stroke Association.

Sunday, May 10, 2015

Mother's Day

There is a book called “I Feel Bad About My Neck”. It was featured on “Oprah” or something a long, long time ago. The title really stuck with me and I wondered if that really was a thing. It is, of course, but the book was written by the same lady as “When Harry Met Sally”, “Sleepless in Seattle” and “You’ve Got Mail”. I’m sure the book’s cutesy, witty and positive, but it’s still a thing.
Aging is a normal part of life, though I have yet to find a wrinkle or a gray hair. Chris on the other hand... 
I hate how women of a certain age are made to feel. Do they have tracheotomy scars or bent necks to feel bad about? Certainly not, but they illustrate how I could’ve been dead, but I’m not. And who among us hasn’t had a near miss or two? Or who doesn’t feel like the 22 year old version of herself? Now to the moms who can’t get back to how they were before, thank you. And happy Mother’s Day.

Sunday, April 26, 2015

MIL

My mother-in-law is moving in. Yes, she’s coming tomorrow. I realize she’ll be moved in by the time I publish this blog entry. I also realize having one’s mother-in-law move in at this stage in the game isn’t customary. It’s also not customary to have a stroke at 31. Not much here is customary. 
My MIL is not the stereotypical mother-in-law. She never was and never will be. Don’t get me wrong...she is a take charge kind of gal…but she knows how to reign it in. She is here to help us, and we can definitely use her help. It’s something we have talked about for a long time. Years, really. Even before I actually had a stroke. Yes, pre-stroke Alison approved this plan. I was able to do a bit more then, too.
It has been a week and a day since she came. Things are better than fine, by the way. I will continue my recovery with her help.

Sunday, April 19, 2015

We moved

So I have moved since I last started a blog. We came as a caravan, with Chris driving the moving truck and two caregivers following him and my MIL (yes, I actually call her that), our nephew and my brother in tow. It was a hectic day, but it was made less so when Jeri brought a sandwich tray, a super-cute housewarming wreath and her kitchen unpacking skills.
We met some neighbors that evening and some later. All have been really nice. I have missed living in a neighborhood.
About the house, it isn’t on the prestigious southern side of town, but it has a half acre. The master bath is the first major home improvement project I have lived through. But we're almost finished.




The floors went in before we moved in. The kitchen is next. Somewhere in this process, we will need to actually furnish the house and finish the basement. Until then, we will continue looking for deer and the rumored fox, turkey and owl.

Friday, March 27, 2015

You're awesome

Move every finger you can. Now feel very happy. No, I haven’t lost my marbles. I do, however, think you are awesome. Next, move every muscle in your body, and be very proud. Just three years ago, I could move every muscle. I definitely took it for granted. Now, I find it arduous to lift a finger but didn’t believe I would be a, for all intents and purposes, mute quadriplegic. But there’s so much more. It just takes a little time. Which no one has...

Yes, I did move back to Springfield, Mo. More on that in my next blog.

Until then, I would be remiss if I didn’t thank my many healthcare workers who toiled to make me better. Seriously, a myriad of them. Thanks.

Sunday, February 22, 2015

Springfield

We are moving back to Springfield. It is not that there’s anything wrong with Kansas City at all. It is just that things are different now than they were when we first moved here almost four years ago. We lived in a more central location. I adored it, as our home was blocks away from my brother and sister-in-law. After my stroke, I lived in a nursing home strategically located near Chris’ work. When I finally got to leave the nursing home, we moved into an apartment, also close to Chris’ office. When we started looking for homes in the Kansas City area, it became increasingly obvious that we weren’t going to find what we wanted here. And I would never, ever be a happy Johnson County, Kansan. I never would’ve just moved here, but I understand why we did. It is not for me. Springfield, however...

I was actually thinking how much more simple it would be to find a home in Springfield. Then Chris received a note from his former boss. He actually wanted my husband to go back to work for him. When I flashed a smile at Chris, he looked puzzled. After I told him about my thought process, he understood.


Above almost everything, it seems that it is important for me to be nearer to people who knew me before I had a stroke. Plus, it’s much closer in proximity to my parents and other family. 

Also, the house on which we made an offer has....wait for it...an elevator. We weren’t even looking for that feature, but hey. We’ll take it. Again, close to Chris’ work. 

I feel I should have mentioned this before, but I am very satisfied with my current caregiver. So much so, we asked her to move with us, and she said no. She did, however, offer to temporarily care for me while we look for a permanent solution. She even offered to train her replacement, but she won’t need to. If things go according to plans, one of my longtime caregivers is planning a move to Springfield.

Sunday, February 1, 2015

Food, glorious food

Pureed spinach through the tube.
My blender arrived during the past couple of weeks. Yippee! We have decided to gradually transition me to pureed real food via tube. My first sample was a bit of sweet potato. I should clarify that this sampling business is to make sure post-stroke me can digest anything that isn’t corn. Wonder of all wonders, I’m fine. I’ve since had apple, avocado, oats, carrots, lentils, spinach, almond milk, cow’s milk, salmon, strawberries, wild rice, peanuts and chicken. I fell asleep before the first chicken attempt, though. No surprise. Am I eating what I was supposed to eat before my stroke? Absolutely. I guess that means no more excuses. 

And furthermore (who says furthermore except in written communications?), Kelsey brought her baby and her mom over. I take partial credit for the little girl, by the way. Not genetically, but she did incubate right beside me. The baby was cute and so little. I was honored by her presence alone, but her mom brought an NOPW-themed quilt for me. Kelsey requested it, but her mom made it. Also, if you don't know what NOPW is, go here.