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Eve's Blog: Suviving FSGS & CKD

evelyneileencawley@yahoo.com

2013 is a New Year

I’ve never been so happy to see December 31 at midnight.  2012 had been awful. Terry and I were both hoping that 2013 would bring hope.

Had the Mayans been right and the world had ended Dec 21st, I wouldn’t have cared one tiny bit. I would have been on the front porch with my arms stretched wide, yelling, take me – take me now. 

Dr. Asshole released me to return to work on Jan 2.

I made it one day and I was so tired and in so much pain, I was discouraged, so I started working half days. My body began shutting down by about 3 each day. Then it became more difficult for me to get out of bed real early in the morning so I started going in later and getting off near 5.  It helped.

By mid January, my feet began swelling and pitting again. I did another 24 hour urinalysis, but it came back fine. My levels were the lowest they had ever been. I’d started a Pred taper. 10 mg every week.  I got down to 5 mg daily and 350mg Cyclo daily.  We still don’t know why my feet are swelling.

A year ago, I weighed 145 lbs.  With the New Year, I weigh 187 lbs.  Talk about pissed. I’m not a happy camper. Not one little bit.  My feet are so large, I had to go buy size 10 shoes.  I normally wear 8.  Nope, not happy. I also had to go buy Large Sweat Pants. My big ass doesn’t fit in my smalls anymore.  Again, not happy.

I had to cut my hair. It’s so thin and the lower half is dead straw. It was time. Terry wasn’t happy. Oh well.

Also mid January, I got a stomach virus. To be more exact, I got the Norovirus. I didn’t know you could get that outside of a cruise ship. I learned something new. And I was miserable.

Terry’s Uncle Earl passed away. We went to the visitation on Monday night and I was feeling a little queazy. Later that evening, I ate a salad. It came back up. The next day, I worked from home. Each time I ate, I threw it up.  By Wedneday morning, I hadn’t had anything stay down in almost three days. I was dry heaving, throwing up acid and bile. Oh my goodness. I called the doctor. He wanted me to go to the hospital. I refused.  By Thursday evening, I was finally holding down some food, fluids so I made an attempt to go to work on Friday. I worked a half day.

I refuse to start the New Year off with a hospital stay. I’ve pretty much been making quarterly visits since I got diagnosed. They should have frequent flyer incentives or discounts.  

I keep thinking to myself…. If I could just go back one year, just one year… could I or would I have done something differently that could have prevented this whole disease?  I know I shouldn’t think that way. It’s not healthy.  I know I have this disease for a reason. I shouldn’t question God’s motive, His plan. I should just go with it.

I’ve always thought God had a specific purpose for me. I’ve always hoped I’d one day do something special…I’ve waited patiently for God to show me the way. I just pray that I don’t let Him down. I pray that He gives me the strength and courage to be a good witness, a child of God and serve the purpose I was meant for….