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.