Back in the game!

Well, the holidays and most of the winter are now behind us!  I'm still playing catch up from the busy season and my recent trip.  I thank everyone who reached out during my little 'hiatus' from the blog.  I appreciated the love, notes, emails, and cards.  I will slowly be getting back to writing more about living life with chronic illness and include an occasional health update from time to time.

This winter was certainly a roller coaster for me and my health.  I had many wonderful days, filled with much joy and happiness.  I enjoyed the holidays and all that comes with them.  I also had many difficult days.  While I'm 10 times better than I was a year ago, it hasn't made the rough days any easier.  I keep telling myself that the really bad days just make the good days that much sweeter.  It's very true.  But the body sure does grow weary of the pain, the limitations, the sick feelings, the emotions, and the let downs.  I pick myself up each and every day, even when the days seems dark!  I'm so grateful to have my family helping me through this difficult journey.

As many of you may know, I spent almost an entire month in southern California during the month of February with my daughter.  We took this trip for medical reasons.  We wanted to try to jump start my body back into the rhythm of last August when I was feeling amazing!  We also know the snow and bitter cold can make life more challenging here in Indiana when you are chronically ill.  We wanted to experiment with climate changes, as well.  Because I cannot do much, physical activity is limited greatly in the cold months.  We also knew this would be a great time to renew the spirit, mind, and body!  I had slowly began to lose so much progress, we had to do something drastic to prevent a return to the wheelchair.  So, we set out on the drive across the country!

I am not a good traveler due to multiple physical limitations.  However, despite having to ride 4 days with my legs on the dashboard, I did amazingly well.  I'm still unable to sit normally with my legs down for more than 10-20 minutes at a time.   Ellie and I spent the next several weeks right on the beach.  We homeschooled, biked, walked, visited family close by, played, talked, read, and reconnected.  It was a beautiful time for us both.  However, the trip did not yield the desired effects.  I had a crash while there, but it didn't last as long as they typically do.  The time with my daughter was priceless.  My men back home did wonderfully without us, and we were delighted to be reunited.  While the results were frustrating, we felt like we did learn a little more and won't call it an entire waste!    Ellie and I are already planning another trip for next February...maybe Florida?!

I've grown more frustrated in the last few months dealing with such an unknown and unpredictable disease.  Knowing that I did have a few months of feeling great, it has only made me more anxious to find out the cause of the decline vs the incline.  The doctors still continue to not have any answers and continue to tell me its all part of the normal course.  I've grown more restless, maybe to my own detriment, to find a way to get better again.  The bad days are increasing in frequency, and my resolve has multiplied.

I'm learning more and more about how to live with chronic illness----despite my consistent denial that this is going to be my life forever.  Each day is brining me new opportunities to learn and grow.  I'm eager to share some of these new coping and managing skills of chronic illness with you.  After all, we only get one shot at this life, might as well make it amazing......even if I am going to be sick.