WHAT A DIFFERENCE TWO YEARS MAKE

Tomorrow it will be two years since I was given the diagnosis of CIDP.  The weeks leading up to it were some of the scariest of my life. Not knowing what was wrong with me, afraid I would decline so much I would need constant care; the future was a big black scary question mark.  It has hovered on the horizon of my thoughts, this anniversary of sorts.  The weeks leading up to it though, have shown me how incredibly blessed and downright lucky I am. 

I have mentioned that this summer is the first one since my daughter started kindergarten seven years ago that I have had a summer off with my family. And we have made the most of it! Two weeks ago, we traveled to Galena for a couple nights. One of the things we had done two years ago was hike with goats, and we were up for it again.  In fact, it was two years to the day that we had done it, and the significance of that was not lost on me.  The picture I have of two years ago are a little deceiving. Nothing really looks wrong. In fact, we look incredibly joyful.  It was a moment in time that belied the fact my “hike” that day was pretty unsteady, and I used my husband’s arm for support for most of it. In the second picture 2 years later, the goats were not quite as cooperative to pose on the log and opted for photo bombing, but it was still fun. 

What was even more delightful for me is that the night before, we ate at my daughter’s favorite restaurant that requires quite a few steps to get to, and the memory of that ascent two years ago compared to how easily I traipsed up them now, made me smile for sure.  When I was there two years ago, my only thought was to get through the trip, giving my daughter some good memories, before we returned home to uncertainty and discouragement.  At the time, we were still just trying to get someone to help and take me seriously. 

There would be a couple weeks after our return before I was able to get the appointment at Rush. Those two weeks seemed like a lifetime. I was getting weaker, able to do less and less. I was sure I would end up in a wheelchair.

BUT……here it is two years later and the condition I was in is the polar opposite of where I am now.  Fully functioning, no discernable weakness, spacing out infusions and enjoying the summer to the best of my ability! Since Galena we have met up with good friends in Michigan City for a quick getaway and next week we start to head east with the final destination being North Carolina.  It’s hard to fathom where I was compared to where I am now.  The treatment I received WORKED and continues to work and for that I am grateful. So many others with this horrible disease have had little response to IVig or many of the other drugs used to combat CIDP.  They struggle with insurance. They struggle with the lack of family and friends supporting them.  They struggle with depression. I thank God every day I continue to live a normal life. 

Just a little preview of coming posts……..I have taken the plunge to enter the world of wigs and have one ordered. The very lovely lady who owns the wig shop here locally has helped me immeasurably in deciding what is right for me. She discouraged the shaving of my head, right off the bat anyway, and we are currently awaiting the arrival of my new do, so she can show me the proper care of it and all the little ins and out of wig wearing.  I picked something as close to my own hair as possible, but it will still, in my opinion, look like a whole new me.  We shall see!