I CAN BIKE!

I posted this on my family blog, but felt it had a place here, too.

My friend Barb, who used to live in our ward, is from England, and talks with a darling accent led us on a bike ride on the rail trail into Dayton and around then back home. Wow, was it beautiful (not the mud, but the rest of the ride was)! This is the first sunny day this week and it was ride your bike to work day, so there were a lot of bike riders out and about with us. Part of the trail was flooded from the Great Miami River overflowing its banks (see photos above) so we just went up another way and had a wonderful time. We rode past the hospital where I work (it was across the river), past the Boonshoft Museum, and up to a pretty gardens area. I'm starting to figure out more of what is cool to do here, and we have just weeks till we leave!

Honestly, I can ride so much easier than I can run. I think it's because my calf muscles are weak and I don't have any bouncy reflexes anymore. But bike riding uses core, hip and upper leg muscles, and mine work! We had a great workout, and I was really tired when I got home, but feel fine now.

So, we rode 32 miles! Last week we rode a little under 20 miles, and we didn't expect to ride so far, but we found some beautiful places to go, had a few snacks, plenty of water, so we just went. A little sunscreen, a few tissues and we were good to go! I think we were gone about 4 hours. Pretty fun trek. Next time I'm taking a real camera. We had to do with cell phone cameras for today.

Priorities

• sell the house
• do the laundry
• get Jim's graduation stuff ready
• sell the house
• work and earn money
• watch Trevor's volleyball games
• sell the house
• take Mae to the fabric store
• let Owen have a friend over
• sell the house
• prepare to move
• fulfill church responsibilities (a little low on the list, but I have easy tasks)
• exercise!

Well, in the midst of all this, and concurrent with financial considerations for traveling, we opted to cancel the trip to the fun run in Charlotte this weekend.  Oh well. It would have made me tired anyways. And spending money isn't even on the list of priorities--so I'll stay here and exercise when I can fit it in.... Notice that the main priority is to sell the house. So we have more to do to make that happen, and this weekend will be a chance for us to do some more clearing out and cleaning. Priorities! First things first!

Two Year Anniversary

I was perusing the GBS-CIDP Foundation web site and saw the ad pictured above. Being the runner I used to be, it caught my eye. Then I read the reason for the run, and decided we'd be going. I can run a 5k easily now (not very fast, but who's timing me?) and it is a great chance to celebrate a good recovery. Also, for now, it's easy driving distance to Charlotte, so we'll make a weekend of it.

It is the 2 year anniversary of my diagnosis (Miller-Fisher variant of GBS). I had problems with my vision, walking and numbness and tingling a week prior, was in the hospital for one day, then sent home to "see how it goes." Well, it went downhill from there and I showed up at my follow-up doctor's appointment (on March 3, 2009) with devastating neurological symptoms. Thankfully it was a short time until the diagnosis was fairly certain and IVIG treatment was begun. I rapidly improved and was able to go home within a couple of weeks after that. I still have lingering tingling and pain that is mostly controlled with Neurontin, and my endurance continues to improve. I feel so blessed to have so much of my body functioning back! And I can empathize with those who lose abilities they once had, or with those who have nerve pain or related fatigue problems. Recently, a talented author I like had a mild stroke. He explores the idea of perspective gained when one loses a physical ability in this article at Talents, gifts, and intelligence.

Life can be hard, but it is GOOD. And we carry on, to work and play and rest! And to celebrate the life we have and the loved ones we share it with.

90%, this brisk hike proves it!

We hiked part of Mt. Diablo, behind my brother-in-law's house (!, I know!, isn't that so cool?!), and took this awesome trail to a waterfall, that I didn't really get a good photo of as I was busy gazing at it amazedly. David (my brother-in-law) led us (Wade was in California for a conference, I just had to join him for a few days!) on a fast-paced, interesting and beautiful 2 1/2 hour hike. As I proceeded to hike along, I wondered if it would zap my strength for days, or what. But instead I felt invigorated, energetic and should have jumped for joy to realize the progress this one event indicated.

Decidedly, the outdoors is where it's at for physical activity that is enjoyable and with enough distraction to keep me interested. My muscles felt a little stiff for a day or two, but in a good way. Awesome workout, amazing trail, and a totally fun hike. Hurray for progress!

Faith

It is fast approaching 2 years to the time I first felt the symptoms of GBS begin in my legs.  My youngest son, Owen still prays every day, "bless Mom to get better from Guillain-Barre."

Honestly, I am still improving, after almost 2 years. I still take neurontin, still have tingliness in my hands, feet and the tip of my tongue, and no deep tendon reflexes. But I do feel stronger. There are improvements in my coordination and speed. I feel so blessed to have continuing improvement.

Thanks, Owen, and friends and family, for your faith and hope, love and prayers. I know the Lord blesses each of us with different things and in various ways to help us to learn and grow. I was not miraculously, suddenly, perfectly healed. But I have felt the loving care of my Father in Heaven and the goodness of Jesus Christ in my daily living. I am grateful for my faith. It is a gift. I feel so blessed.

What new things can I do?

staircase photo from loghome.com, NOT my staircase, but isn't it a beautiful entry?!

Every once in awhile I ask myself what new things I can do since Guillain-Barre. Let's make my list from the past few months:

• Owen says I am conscious more of the time! So true.
  
• I can do dishes (stand at the sink, putter around the kitchen).
  
• I can go up and down the stairs multiple times a day--it's like getting in a workout, not killing my energy for the day.
  
• I can drive just fine. I still like using cruise control since my gas pedal leg is the weaker one, but I can totally do it.
  
• I can jog. Legs still stiff-ish and leaden from the knees down, but if I'm well rested and keep my head, I can run a little bit a couple of times a week, albeit slowly!
• I can go to work. Really...I can do all I need to as an Emergency Room RN. IV's, no problem (well, no more than the usual difficulties!), walking all shift--even the occasional 12-hour one-okay. I still only work maybe part-time hours, but this is just fine for me and my family.
  

So what do you think of that? For me, this is progress, and I like that. I hope other patients experience similar improvement over time.

Speaking of other patients...I have found another blog I like at guillain-barresyndrome.blogspot.com. It is informative, and the gal who authors it has had a great recovery. Admittedly I found her link on the facebook GBS group. I just can't get into facebook on a regular basis, but it does have an amazing ability to connect people.

Also from the facebook GBS group, I found this quote, GBS also stands for "Getting Better Slowly." For sure! And for some more than others. To everyone, GBS patients or not...let's keep a goin'!

Guest Blogger, Jon Childs

This is his story, in his words (clarifications added by Amy D.)

Diagnosis
"I contracted Guillain-Barre about 12 years ago while brand new to the mission field in Australia. I ate some chicken that was a little too old and got food poisoning, which then developed into Guillian-Barre. Six days after the food poisoning hit is when I noticed things weren't right. I remember I woke up on our p-day (preparation day for missionary work), and I could barely get to my feet. I tried to jump and nothing. I couldn't even stand on my tippy toes. I went to the doctor and he didn't know what to make of it and sent me home until he could figure it out. By that afternoon I could barely walk and steps were out of the question. Luckily the doctor called me back and sent me to the emergency room. They did a bunch of tests and then sent me 2 hours away to one of Melbourne's main hospitals. I got there and received a great blessing (priesthood blessing by members of the church), then they did a bunch of breathing tests then a spinal tap.

Treatment
Luckily Australia has only 20 million people there and the medical care is top notch. I had the white blood cell treatments (likely IVIG) for 5 days then a slow recovery after that.

Recovery
I was moved to a rehabilitation center (right on the beach - very nice) and spent 3 or so months there learning to walk and other movements again. I was able to recover enough to get to go back in the field (serving as a missionary). After 3 months I asked to be taken out of the car so I could walk and bike and get my body back again. It took awhile and I had pain here and there, but walking and riding everywhere played a huge part in my recovery. I pushed myself very hard and after a year of first contracting it, I was almost back to normal and 3 months later I was in better shape then I was when I first arrived. When I came home I was down almost 30 lbs.

Life Now
I look back and think how crazy it all was. The biggest problem I have now, which I hear is a common side effect, is about 2 days a week I will have no energy and just fall asleep. I have fallen asleep almost everywhere."

That is his experience. Thanks so much, Jon for another perspective and example of GBS. Neither Jon nor I had any respiratory depression. I'm sure this would make the course of this illness much different. If you chance upon this blog and have any words of encouragement or information to share, please comment!