Tuesday, April 24, 2012

Day 24 of Cushing's Awareness: Dealing with the grief of Cushing's

This will be a short entry as I haven't been feeling so great today.  I have had a bit of adrenal insufficiency and slept the majority of the day away.  However, when I was awake I felt a sense of grief which I do periodically with this disease.

I mourn the loss of all that should be normal in my life, but it is not.  Yesterday I left the house to go to a dentist appointment, then stopped by my mom's to pick up my son and then we went out to eat and hit the grocery store.  I knew that it was probably going to be too much for my sick body, but I just wanted to have a day that felt "normal."  I was feeling sick before I even left the dentist's office, but I kept on because I wanted to be able to spend the evening with my family and just soak it all in.  It's funny how something so many take for granted is something that I look forward to.

I paid for it dearly last night and today.  I knew it was going to be a rough day when last night I was in bed before 1 A.M. and was hardly able to speak a coherent sentence. Plus, the pain had set in so badly I was doing nothing but gnashing my teeth to will it away.  I had two and a half hours of sleep the night before and was running on empty.  This morning I woke with such a headache.  I knew it wasn't a normal headache, it was one saying my body was running low on cortisol from overdoing it yesterday.  I also found myself running to the bathroom more times than I care to admit.  TMI I know, but it is the reality of what I deal with and I promised myself I wasn't going to hold back while writing about what I deal with. I still believe I have Cushing's, but I still cycle so I have low days mixed in with my high ones.  It's such a cruddy feeling.  When I am low I find myself being more depressed than usual as well.

I just hope one day that I am able to look back on all of this and realize that these were my dark days.  I want so badly to be able to take my kids to Disney World.  My daughter, bless her heart has said she wants to become a doctor so that she can make mommy better.  She has a heart of gold and wants nothing more than to see her mom get better so that we can do normal things together.  I just want to be able to feel good enough to go bike riding, swimming, walk around Disney and so much more with my kids.  I just want to scream sometimes "WHY ME?"  "What did I do to deserve this?"  It's a sick and cruel joke to be blessed with two miracles and then not be well enough to do the everyday normal things with them.

On these days I remember my Grandma.  She was sick the majority of my life, but she meant the world to me. It didn't matter what we did together as long as I was with her.  I enjoyed cuddling with her, just talking, making dinner and just being in her company.  I wouldn't have traded it for the world.  I just hope that one day my children can look back and think about me in that same manner.  I don't want them to ever feel like they were short changed because their momma was sick.  I hope my love will be enough to sustain them through these rough times.

Cushing's affects every aspect of my life.  I will not let it define me as a person, but I cannot lie that it takes up entirely too much of my life.  It really needs to go and with a quickness.

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