The Uuuups and Doooooowns

Things have returned to the hectic lifestyle that is our norm.  I'm trying to get back to 40 hour work weeks, but germs seem to like to get in the way of that.  Every time I get close and think it's going to happen, I get sick and feel like I have to start all over again!  For example, I made it through our entire cruise without getting sick.  Michael started the trip with an ear infection, and by the end of the trip Morgan was complaining of an ear ache.  We were skeptical at first, but when she woke the first morning back from the trip complaining about her ear first thing, I called her pediatrician. 

Now on a side note, we were talking about how nice her doctor is on the way to the appointment.  She told me she really liked Dr Redwine but Nurse Ashley is not nice.  When I asked her why, she told me that Nurse Ahsley scratches her throat with a stick and makes it hurt.  I couldn't believe she remembered being tested for strep last fall.  I reassured her that we'd only be looking in her ears, and Nurse Ashley definitely hates to have to put the stick in her throat and only does it to make her feel better.  I even asked Nurse Ashley about the strep test, and she also assured Morgan we would just be looking in her ears.  Of course when Dr Redwine checked her ears, nose, and throat she noticed some splotches at the back of her throat and swollen glands.  What did that mean...?  Poor Nurse Ashley had to come in and put the stick at the back of Morgan's throat!  Only ice cream would do after that betrayal!  To top it off, Morgan's strep test came back positive...and so did mine.

This strep has kicked my butt!  It has taken a full week to get over it.  Today is the first day I've felt normal again, and that was after 13 hours of sleep last night!  Sheesh.  I'm trying to stay upbeat about it though.  If I can make it through the crazy lows of the last six months, I can definitely make it through this little dip.

My meds are slowly diminishing.  Check out the two boxes in the picture below.  I had to swap the boxes for my active and inactive prescriptions, because the inactive box was overflowing!  The pink ones are the pills I'm currently taking, and the black one holds my old prescriptions that I've been able to drop! Also note the giant pee jug I have to fill when we make the trip to Mayo at the end of July...fun times.

My heart actually dropped when I got a phone call just before our trip.  My doctor called me after some bloodwork.  He never calls unless there is a problem, and I usually hear from the nurse if everything is ok.  He laughed and said there was no way he was going to let the nurse give me the best news yet.  He had spoken with the doctor at Mayo, and they both agreed they wanted to start tapering my drugs.  I've completely dropped the Cellcept from my daily lineup.  I just did another blood draw and spot check today, and if everything is stable, I can cut my Acthar injection dosage in half.  That would be awesome, because it takes me about 10 - 15 seconds to get the full mL into my leg.  My hand is always shaking by the time I finish....I think it is a mental thing.

I'm excited about the end of July and going to Mayo for two reasons.  First, if my test results are still stable, I can drop the Acthar injections all together!  On top of having to stick myself, it has the lovely side effect of weight gain.  I have found that sticking myself hurts a little less than having Michael do it...thanks to you for doing it for me though baby!  Second, when we go to MN, I'm going to meet some really cool girls.  Two of them I've met online through this ordeal, and they are also dealing with kidney disease.  Another is the tiny little Anwyn Grace whose mom is my dear friend from UNC!  I'm bummed Morgan won't be with me to meet her.  Morgan travelled to MN when Erin was pregnant with Anwyn for the baby shower.  It would also be cool for Morgan to meet the kids of the girls I've met online.  Their kids are also 4, and one of them was born the day before Morgan...kinda neat!  She'll have fun here in OK with her Grammie and PawPaw though.

Off to find Michael to drag him along to yet another appointment this afternoon.  I'm sure my insurance company has been just thrilled by my 2012 portfolio to date!