ROAD TRIP!

(This is Chris, btw.) You may have been wondering why Alison hasn't blogged in over eight months. Well if you'll remember back to October, Alison had a pretty rough couple of weeks with back-to-back hospital stays - which included her worst infection to-date and her first-ever seizure. Ever since, she's struggled to rebound to her normal (post-stroke) self, and her ability to blog and communicate has been hindered. I'll spare you all the details, but it's been a real challenge of all of us at times.

We've consulted with local specialists the best we could, but are now taking a bigger step toward trying to figure out what happened back in October to cause all of this - in hopes we can figure out a better way to move forward. On Monday we're loading up the van and heading north to Rochester, MN. The neurology team at Mayo Clinic has agreed to see Alison. We'll be there for about two weeks.

We're pretty excited about this opportunity. Mayo has such a great reputation, and Alison deserves the best possible shot at finding some relief. There's certainly no down side to having the best and brightest doctors in the country poking around in her brain for a couple of weeks. Who knows, maybe they'll stumble upon something that will help with more than just these recent issues!

I'll give you guys another update when we get back to let you know how it went. And thanks for all your continued support. - Chris

From Chris' perspective

Well, hello there. I think it is about time for us to take a little journey. Really, there is no reason in mind. No reason at all.

On March 11, 2012, we were living life similarly to any American couple without children. I say that, but I mean the boring, in bed by 10 p.m. kind. And I said we because this stroke didn’t just happen to me. It happened to Chris, too. And to everyone else who loves me, for that matter. But it mostly affected Chris and me. And I am pretty sure we will need couples’ therapy after I am recovered.

I can’t begin to imagine what it is like to have a spouse going through this. Seriously, at this age? I’d like to ask you to try and read this entry from Chris’ perspective.

For about a month after my stroke, I was in an intensive care unit at the hospital in Kansas City. Nobody knew what to expect of my prognosis. Except Chris knew my memory was still there.

Next, I was in Nebraska at a rehab hospital for three months. While there, I pretty much accomplished, well, nothing. Chris, however, sent a very important email I mentioned in a previous entry that got us connected with some communication specialists. I guess I did learn to sort of communicate using my left foot and a computer. And I guess it was there that we learned my recovery would take its own course and speed. They also got me off of that ventilator. Still not enough for me. Also, to be fair, I was kind of a mangled mess when I arrived.

Once I was back in the Kansas City area, I continued to work on using my toe switch with the computer. I was living in a nursing home then. For seven months, young Chris visited his young wife before and after work, on weekends and on holidays. While I was there, I began using my left thumb to communicate. And I started shaking my head.

I finally moved “home” in time for my one year stroke anniversary. I used quotation marks there because Chris and I decided to sell our house months earlier. He was then living in a tiny apartment close to his work and the nursing home. Chris was there and our dog was there, so it was home.

Now that we are living in Springfield, both our house and I need some work. Home renovations are underway, but not coming along as quickly as I had imagined. I guess that really exemplifies my recovery as well. My expectations have always been different than reality. That’s a good thing, right?

About hospitals

When I was much younger, I thought it would be fun to be in the hospital. For nothing life-threatening, of course. Maybe to get a tonsillectomy or have a baby.

Now that I think about it, I just wanted attention. Maybe some cards and flowers would’ve been the cure. 

Instead, my first visit to the hospital was not so great. Honestly, I can’t remember most of it. I guess I learned my lesson there. Now, I have been hospitalized more times than I can remember. And it is not fun.

I guess whoever said to be careful what you wish for was absolutely correct. Now I am wishing I had never seen the inside of a hospital—as a patient, anyway. I visited more than my fair share of family members, and I had a lot of meetings at hospitals because of my line of work.

In conclusion, I guess I would prefer not to go to the hospital again. As a patient, I mean.

Totally unrelated, I had a very bad impromptu power wheelchair practice session in the basement over the weekend. It’s one thing to go down a long, empty hallway, and entirely another to drive in a place with obstacles. I will go back for more, though. Because that is what I do.

Why I blog

When this blog first started it was supposed to be about my recovery. While it may not be as prominent today, my recovery will always be part of my story. As Chris said so many years ago, “It’s not a sprint, it’s a marathon”. A little help--medical, miracle (or both)--would be appreciated.

On the other hand, my blog has become so much more over the past couple years. It has become a place where I can express myself somewhat freely. However, it takes a lot of work for me to post a blog right now. It also takes a bunch of time. And not just my time, either. Chris helps me proof and post. I can’t begin to thank him enough. Now that I think about it, I should also express my gratitude for those current and past caregivers for getting and keeping my hand positioned just right. That is no small task.

Speaking of which, two of the guys from Be Extraordinary came to start working on a custom foot switch for my chair, and they’re bring it up next week. That’s good, because I have places to go and things to do.

Dear Blog Proofreaders

Dear Blog Proofreaders,

I owe you many apologies. There have been many comma omissions and other mistakes. I really have no excuse, except maybe I can blame the stroke. Yes, I will assign responsibility there.

As for writing style, I have no idea what I am doing. I can actually place responsibility on the stroke for this one. My Associated Press Stylebook is on a bookshelf across the house. If it happened to be in a different location, it wouldn’t matter, so there’s that. I could look up questions online, but that wouldn’t be efficient. So I guess that means we are stuck with Alison Style for now.

Sincerely,
Alison

Just a sidenote, I am recovering from some rare disorder. At least I had never heard of it. One evening, Chris noticed swelling along the right side of my face and neck, and I began to feel pain radiating from my mouth. A visit to the dentist and referral to an oral surgeon later, and we learned that I have an infected salivary gland. Who knew? The antibiotic seems to be working though.

Begging for money

My switch was broken for a while, but now it’s fixed. I am even getting a backup this time.

I know I never beg for money, but I will not let it stop me now. If you are longing for a nonprofit to support, boy howdy, have I got some for you.

Be Extraordinary has been invaluable to me. I would not have a blog without my switch. I also wouldn’t have taken as easily to the power wheelchair. And they are working on other projects for me and others who need their help.

Another nonprofit of note is Falling Forward Foundation. Simply put, they pay for therapy when insurance doesn’t. I was a beneficiary before I even knew anything about the nonprofit. Right now, Falling Forward is primarily working with rehab facilities in Lawrence, Kan., the Kansas City area, Colorado, and most recently, Chicago.

Of course, there is also NOPW whose purpose is to make people aware that young individuals can and do have strokes. Their annual events begin May 16, and go throughout May, but I suppose they would accept donations anytime.

I am also glad to report that my motorized wheelchair will be here within a month. It may seem like it has been a long time since I first mentioned it, but it really hasn’t. Not in the health insurance world. And if there is anything I have learned during this whole process, it has been a little bit of patience.

Eras

Prepare yourself for a couple of euphemisms. I have been watching a few historical dramas lately. For example, I am catching “Little House on the Prairie” almost every afternoon. Let me rephrase that so I sound less pathetic. “Little House On the Prairie” is on all the time and I watch sometimes. I am also watching “Bomb Girls”, “When Calls the Heart” and, of course, I was an avid “Downton Abbey” viewer. I was saddened almost as much by the cheesy series finale as I was by the fact that it was the last episode ever.

It is fun to imagine living in different eras, but the fact of the matter is that I would have probably kicked the bucket (euphemism one) by now if I lived in another time. There is also a small chance I could have not passed away (euphemism two) if I lived in a different period. Undoubtedly, I could have lived, but far less comfortably. There obviously would not be a blog, and there would definitely not be a power wheelchair in the 19^th century, the 1930s or the 1940s.

While we are on the topic of media, I finally got around to watching “My Beautiful Broken Brain” on Netflix. While I thought it was good that it brought awareness to stroke in young people, there were too many missed opportunities (euphemism three). I think it is important to mention that there are many other telltale signs of stroke and ongoing side effects. The filmmaker chose to show her journey and no one else’s.

And for those of you who needed to look up the meaning of euphemism, it could be said that you are missing a few crayons in your box. But not really, because you are reading my blog.