I know we always say it...time flies...even in my mundane life...time flies...it is now late July and I cannot believe my symptoms began a year ago and worsened this week a year ago...incredible!!! I have learned and continue to learn so, so much in this crazy year! WOW! Patience (hhhhahahaaaa...) seems to be the word of the year...not a virtue...more of a practiced attitude.
A year. When I was first diagnosed with plain, simple GBS I was looking at six months to a year for recovery. When we switched the diagnosis to CIDP...we went to at least a year and most likely much more. It still is an unknown to us. Patience.
One of my readings yesterday allowed me to reflect on attitude. We blink one thousand times a day. Dark, light. Dark, light. How do we choose each day? Most of our lives are a combination of dark and light. Perhaps blinking keeps us in the middle...keeping us from drowning in the dark or burning up in the light. Nature teaches us so much.
I am not a loyal blogger...sorry. I just love that I have friends that look forward to my updates...you would think with so much time I would be better...best of intentions...my apologies. I have friends in Marietta whose elderly father just went from GBS to CIDP...they were reading my blog to him last week...I do hope it soothed him some and I pray he is getting great treatment and he gets well!
June/July. The last month has been super positive. I had another round of treatments with no adverse reactions. I am improving and getting stronger. My visit July 12th with my neurologist was super. I had not seen him for three months so he was pleased. As always Dr. Arce took his time with us and we always feel like we are the only ones that exist in his office. My arms are definitely improved and he thinks I could have complete (or as complete as it may get) by my next visit in October. My thighs are improved but still not much of anything below my knees. We are going to continue IVig and keep working to heal. He cannot give us any prediction on possible residuals/permanent nerve damage. All to be known down the road. His staff are wonderful and never fail to ask how we are...going out the door, Dr. Arce said it was nice to see me smile!
I can pedal six minutes, can lift my legs, pull them up and a few other movements I could not do just two months ago. YAHHOOO!!! We are getting there and we are so blessed. Our families and friends have never waned and continue to support us in many ways. Our son takes me to the farmer's market on Saturdays or my girlfriends bring me all my favorites. Wonderful meals and fattening desserts continue...wow!!! I ride in our golf cart on Friday evenings as we join our golf pals...my coaching skills leave a bit to be desired though. Our flowers look great (Tony says it's all his touch...whatever!!!). Many positives to be thankful for each and every day. Life is twisty but I would not trade mine.
We have much to look forward to in the coming years and we plan to live life to the fullest...being present and loving like there's no tomorrow...because, really, there isn't tomorrow.
By the way, since "the trial" is over, daytime tv is back to sucking...on a good tv note...True Blood, Weeds and The Big C are going strong!!!
Love, hugs and peace.
