Wednesday, April 7, 2010

Easter Re-cap

Easter was good.  Gary had a lot of fun during our egg hunt.  He got a head start before all the older kids.  I had to hop around early in the morning.  I was went to bed at 1am the night before, helping the Easter Bunny out.  He likes me because our initials are the same,  E.B. : ).  Up again at 6am to hide them.  With wet hair and a towel on my head hiding eggs in the yard.   The kids had to wait until dinner to hunt them.

Last week I did post on the Cure JM board about some brown spots in the cuticles of his fingers.  This was on  Friday during the lab draw.  After discovering the tiny spots and over grown cuticles I had the rheumatology staff hunt down a nurse or a doctor to come take a look.  See if they had any input.  Naturally I tend to freak out at anything new or returning.  Especially in the middle of course of cytoxan.  The spots I knew what they were.  I didn't need them to tell me.  They are hemorrhaging capillarey vein in his nail folds.  A disease activity indicator.  One of the disease indicators that is.  The cuticles are overgrowing again, like in the beginning when we were first diagnosed.  So it is not like I haven't seen them before.  I have calmed way down over the weekend.  I was concerned especially when the doctor that did come out to look at them asked if he hit his fingers on anything.    As always I am nice and forgiving.  But then my inner dialog starts when the logic is processed.  Wow.  Really, did you just ask me that?  I know everyone has a process.  She was super sweet for coming out to the lobby to see us but our only answer was "I will email the last person you saw in clinic."  I thought of pushing more but we are the middle of cytoxan like I said before.  His labs are great, his strength is good, and the rest of his skin is on and off.  Not much more to be done right now without changing or adding or increasing something and in my Dr. Mom opinion, I don't see that being necessary at this time.  But in the back of my silly mind thoughts like, 'is this new activity?  a sign of what is to come? is this the start or the end of a flare?'  Madness.  A symptom of being a mother is torturous thoughts.  You have to admit though, you can't blame given his past.  I have to sit here and think, next month could we have to go back in the hospital?  What if?  I have a fire extinguisher in my head.  I have pulled the pin and am putting that thought out.  Because it is a waste.  A waste of fear and anxiety.  My fear and/or anxiety will change nothing.  Even if it does happen.  My favorite however, is looking back when you are knee deep in it and saying, "remember that day at the lab,  uh huh, yep, told ya!".  Besides, lots of other stuff I can throw my fear and anxiety at like, oh, I don't know, earthquakes, or I got it! Bills.  Or how about money!  Yes, that gets my heart pumping.  And its not about having too much of it if you catch my drift. Ha ha.  That's a favorite.

Give it to God.  

1 comment:

  1. Gary looks so stinkin cute dying Easter eggs! Girly I am getting the hemmoraging back in my nail beds too! Do you think it is the weather? For some reason I think the sun triggers our flares some too! I am on tons of meds and a big steroid pulse and I am getting the hemmoraging nail beds too! Wonder if it is a sign of it all going away! I hope it is for Gary and me both! Let me know if you find out anything and I will let you know too!

    Hang in there girly
    Summer ;0)