It's Scary when I feel well - Moving on!

False Hope is what I experience right after my chemotherapy treatments.  My energy comes back, the dark black circles under my eyes become bright, I can think clearly, walk with confidence, think about tomorrow and begin to dream about the possibility of regaining a normal life again, whatever what means. Prior to the last 14 years, when my health first declined, I truly loved my profession as a nutrition counselor, personnel trainer, and fitness advisor.  That chapter of my life prepared me for what is, a body that has failed the norm no matter how healthy I was. I know how to stay strong within the confines of my home and eat for health not for pleasure because of my prior life.  I am fortunate to have these tools to survive the life of chronic illness.  I worry about all those that aren’t as fortunate as me. When I feel as well as I do today I realize that getting on the plane taking me to San Diego and then Palo Alto for Stanford Medicine X conference is a reality.   I’m so excited to go and participate and learn whatever I can for the rare disease community, but I will bring my cane just in case I start to decline. I will bring my medications just in case I start to flare.  A flare may mean that my legs and feet swell up so much that I can’t walk.  I imagine Stanford will provide wheelchairs, just in case.  It may mean that I will have to sleep up to 13 hours before I can get out of bed for the next conference day.  There is a possibility that I may not be able to concentrate on anything anyone is saying, so I’ll just be present and let life happen as it should. I completed my last chemotherapy treatment just two months ago.   In 6 weeks this very strange protein begins to re-produce itself in my bone marrow and then all hell brakes loose.  No one has me able to explain to me why this happens. Maybe I can beat it this time but in reality I have to be that it is a very strong possibility that my health will decline again and I will be in that place where fear sets in. Why am I fearful? Because, no one understands what my body is doing and how to STOP it. Kind of scary isn’t it?  I’m scared because I experienced a brief moment in time when life feels normal and I don’t want to let it go.  I just don’t want to be a sick person again. The worst part about having a chronic illness for me is fatigue.  I can deal with allot of pain but when fatigue sets in, life STOPS.  I’m a triple a personality but there are days that nothing, not even my grandkids smiling faces pull me out of that frightening place where my body just won’t move.  Of course I never let anyone see me that way.  That’s when I hide. People usually say, “Hey Mare, you look pretty good today”.   That’s because most people never see me when I am the hurting child, the person that just can’t participate in life.  So today I am well and strong and I’m making plans and hoping and praying that maybe it might not happen again.  Maybe the invader will disappear and never come back. What will I do with all that wellness?  How will I handle it, all over again, if or when it returns?

Looks like I lost my paragraphs? Oh well!