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!

Moving on!

As much as I loved the latest post about my one-year milestones, it's time to move on! It has been a busy several months for me and my family. My husband, who is Active Duty Air Force just went to Korea for a year long assignment. Yeah, a little scary to be the lone parent, but I am stronger and I have lots of help with 4 strong and healthy kids at home (well, one is recovering from mono, but since he can still play hard, we figure he can work, too!).

I still have a lot to say about GBS, life, and progress, so I will try to keep this blog alive in a positive way. The same way it started...

One year

A year ago this week, I was experiencing difficulty walking, pain in my hips and legs, double vision and weakness. I was eventually diagnosed with GBS, Miller Fisher variant, treated with IVIG, physical and occupational therapy, and sent home to slowly recover.

It has been a long year. Quieter, calmer, and more reflective than years past.

Today:

• I can walk well
• Lower legs feel heavy, but are usable
• Still no deep tendon reflexes
• Feet still tingly and numb
• Fingertips tingly (tip of tongue, too)
• Endurance much better
• Balance better, still a little more wobbly than my 41 years
• Working some-less than before, but getting back
• Exercising is great (30+ min. w/heart rate up!) at YMCA doing elliptical, bike or treadmill, some swimming, even walking with a bit of jogging outside!
• Soft things are my favorite: blanket, scarf, socks and the stuffed animals the kids share with me

I still take time to rest every day to save energy for the necessary stuff or things I really want to do. Wade does more dishes and can fix dinner at the last minute on days I run out of steam (fewer and fewer, though!). The kids have learned the real meaning of nerves on edge, and other nerve related sayings. I have my moments of overload, but everyone is forgiving and patient.

I love my family and can't say enough about how their love and support is the greatest thing. Mom and Dad, siblings, dear friends, extended family and especially Wade, Jim, Trevor, Mae, and Owen--thanks!

Neurontin

Early on in the course my GBS, the doctors tried neurontin for the pain in my hips and legs. Fortunately it turned out to be very effective with no noticeable side effects, and I'm still taking it three times a day.

A couple of weeks ago I started to feel drowsy occasionally about 30-60 minutes after the doses I took during the daytime, so I wondered if it would help to decrease the dosage a little bit (per my neurologist). I also misplaced one of the bottles of my prescription and figured it would be a good time to see if I still needed the dose I was taking. Long story, short; after a week of trying to lower the dose from 900mg to 600mg every 8 hours, I felt more irritable, tingly and just like not moving, a lot more of the time.

So now I am back to taking 900mg at least for 2 doses a day. If I feel ok at the end of the day, I just take 600mg before going to sleep, then take the normal dose when I wake up. We'll see how it goes, but for now I'll be grateful for how much this medication helps my nerve symptoms, and keep taking it for as long as needed. My neurologist said it could be for at least a couple of years. Speaking of time...(see next post!).

image from patientpowernow.org

Tips and Tricks

A few things I have learned since becoming weak:

• when a door opens inward, just lean into it (throw your weight into it!) to open it
• use a backpack (with both straps)-- hands tire quickly when holding onto a purse or bag
• relax shoulders whenever you think of it... when driving, walking, sitting, eating-- this will release tension
• use cruise! control, that is. Both our cars engage at 25 mph, so it can be used even in neighborhoods. This saves your foot/ankle/leg from applying constant pressure.

Some of these things seem silly, but all conserve energy to be used for specific strengthening exercises or cooking dinner or whatever you really need to get accomplished today, or any day. Think about that! It's worth it to me.

Image found at wordpressblog.com

Time to see the doctor

I have a really nice family doctor. He saw me for a check-up, then a month later saw me in a follow up visit to my first hospital stay, sending me straight to the neurologist who eventually diagnosed GBS.

It was time for a check-up again this month and again, I was impressed that I have such a caring doctor. He asked many questions to make sure that during my relatively slow recovery that I am keeping my spirits up. He is a civilian doctor at the Air Force Base Hospital where I live. I'm glad he chose to work there.

We rely so much on competent doctors to help with our health concerns. As far as Health Care Reform goes, I just hope that it is clear that we need good, smart doctors and we need to compensate them fairly. What smart, caring person would decide to go to medical school if they know they will be poorly paid and have little decision making power in their practice when they graduate? Just something to think about.

image from digital-scrapbook-kits.com

Two great examples

Did you know Rowdy Gaines had GBS? I didn't until I was looking for an online version of a recent recoveree. I remember his name from the 1984 Olympics--he was a swimmer. And he won gold medals (wow!). Anyway, in the 1990's he had GBS and was investigating the LDS church. Story here.

Then here is the article I was looking for in the first place. I asked my young son to read the paragraph describing the onset of symptoms and he recognized those as GBS. The article is about a high school athlete recovered from from GBS in time to play his last year of football. Part of his recovery was shooting baskets and playing basketball. How fun is that?!

Being forced to slow down

Have you noticed that you can learn a lot from things that you don't want to have happen (i.e. trials)? I read The Last Song by Nicholas Sparks this week and was impressed by a quote from page 264.

Strange, what being forced to slow down could do to a person.

Applies to GBS, for sure! In the book, a girl and her brother go from NYC to live with their dad on the beach in North Carolina for the summer and as the pace of life slows down, they learn to be less selfish, more aware, and to love. It's quite beautiful, actually. Didn't know till I was searching for a book image that it is soon to be out as a movie. Hope my favorite quote is in it.

Regain, Rebuild, Restore

• Regain fitness
  
• Rebuild strength
• Restore active lifestyle.

These are the goals of my new plan to use our Wii Fit to help me toward my best possible physical functioning this year. Check it out at MiiontheWii.

Check out this stance!

Christmas Day, 2009

10 months since the onset of GBS. Look at those feet?! Just keepin' my balance, baby. You know, I did not realize I was doing that, or if I did, I thought my feet would not be in the photo. So, being pigeon toed does not mean that I should stand around all twisted up, but it might explain why a tired leg would resort to the above position.

All in all, lots of progress is happening...just very slowly. I estimate myself at 70-75% of my normal functioning (though significantly less if you count endurance). At the latest neurologist visit, he said to give it a good 12-18 months and see where we are and what residual effects linger.

As of now:

• No deep tendon reflexes (zero, zilch, nada).
• Still walking with a wider than normal gait (very cute-- not so much! but what can one do without those reflexes!).
• Able to walk a couple of miles on an easy going day without other demands.
• Spending time at work 2 or 3 times a week doing light duty RN stuff (sort nurse in triage, a couple of hours patient care here and there).
• Doing more cooking, cleaning, laundry and other regular chores (the family LOVES this!).
• A couple of hours rest is often enough to recharge after doing a little too much--better than a day or more!

We had a nice Christmas at home with the traditional scones and fruit soup for brunch in the morning after presents. I slept all afternoon after working the night before and staying up finishing wrapping (procrastinator that I am!), so life is getting back to normal. And I am happy.

Month of Gratitude!

Did I really not post anything for over a month?! One thing that should have made it here was a photo of myself asleep at the computer along with an explanation of how that happens now and then (I put it on my personal journal blog instead). That would not have happened in my life before GBS. I guess not posting could mean that things are progressing, life is busier with normal stuff.

Truly, though, I never forget that I'm recovering from something big (at least big for me!). I am grateful to be recovering--this is a blessing. Life is slower and more careful. And you know, there is a lot of good in that. I appreciate the view from my bed (the best reclining place of rest for me in the house) so much. Instead of a window, I get to look out a full patio sliding glass door past a normal balcony into a big backyard with trees and grass. Anytime of year it's interesting and a great view. Most of the year there are times of the day to go out and sit on the balcony and rest, read or watch the kids play in the yard. Today there was plenty of bright sunlight to be seen and felt. This is one of the many things I am grateful for.

Gratitude is endless for my family and the love and patience they show me. The kids really do help more (hint, hint), and they keep me supplied with soft stuffed animal companions on loan to sooth my tingly hands (note the hamster in my hands!). Wade is tired for having so many additional tasks to do around the house yet he remains loving and sweet. I constantly wish I was doing more and watching or sleeping less, but I am glad to be able to do more all the time. Yep, there is so much I am thankful for!

(photo is Mae soothing me as I rested between things on Thanksgiving Day, 2009 in Nashville)

What's the best thing that has happened as a result of GBS?

Wow. Even I wonder how I can ask this question. For me the answer is this:

I am more grateful for everything.  Living. Family. Walking. Running. Speaking. Eating. Seeing. Reading. Driving. Cooking. Functioning.

I am more thankful than ever for all of it.

(A close second would be this: My family has learned to be less dependent on me for almost everything.)

Can do...

Over the past several months with slow, but mostly steady progress in my physical activities, I will periodically list the things I can do. Sometimes for perspective I list the can't do stuff, but only for the record, since I hope to be able to do them soon. Often something makes it on the can do list just because it wasn't on there last time!

Currently I can:

• walk for 20-30 minutes (yep, this means more than once around the block!)
• stay awake while reading
• go up and down the stairs if I forget something (instead of sending one of the kids after it--though I still do that sometimes anyway!)
• carry the laundry basket (instead of dragging it)
• cook real dinner without just directing the action from a stool in the kitchen
• make bread (thanks to a powerful KitchenAid--but still, it wasn't on the list last time)
• do light duty work (at the hospital) without feeling like a wrung out washcloth at the end of 4 hours
• smile when I lose my balance or catch someone looking at my gait with a puzzled look on their face

The reasons to make such a list are to mark progress, laugh a bit at the irony of the items listed, and to keep things positive, upbeat, light and can do. FYI, my can't do list includes running, working on a Master's degree, puttering till late into the night, and starting IV's, but those things can wait while I listen to my kids talk while we walk, while they read, while I bake cookies, blog, and while I rest and heal.

A beginning...

You have a diagnosis. There is a lot you don’t know. Basically, you know how you feel and nothing you read sounds exactly like your case. Not to fear. You will face this illness and slow recovery with courage, balance and, of necessity, patience.

This blog will be here for a little bit of information, a lot of hope and uplifting messages, from one who has had a taste of what you might be going through. I am currently 6 months into Miller-Fisher variant of Guillain-Barre Syndrome. In my searching for information about this uncommon syndrome, I found some facts, but not much else online. There is a mountain to climb...let us begin.

photo from http://www.guardian.co.uk/travel/2007/jan/02/top10.cycling