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Day 37 Post Cystectomy

12/27/2019

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I had a difficult time falling asleep last night.  I've had restless leg syndrome off and on for the past 10-20 years (can't remember exactly when it started) but it's never been all that bad.  But since my surgery I think that's been the main thing waking me up in the middle of the night now that I don't have to wake up to pee anymore.  Well, I couldn't even go to sleep last night because I had it pretty bad.  I started reading an ebook I got from my library by the wife of comedian Jim Gaffigan.  She ran into her own health challenge a couple years ago when they discovered she had a brain tumor the size of a pear!  Thankfully, they were able to operate and get it, and since then she wrote a book titled When Life Gives You Pears.  It's really good and helped me pass the time until my restless leg died down around 3am.  I only slept until 8:30am but I was wide awake after that, so I finally got up around 9.  My pee was super clear all day and I didn't feel any pain in my kidney today, so I was very happy about that!  

I started calling about my ConvaTec order around 11am and had to leave a message again.  I called again around 1pm and said I really needed to speak with someone as I'm trying to get this order in before the end of the year since I've met my deductible.  I was finally transferred to the lady handling my order, and man did she have an attitude.  I guess she was ticked off she had to work after Christmas or something, but she was not very pleasant to deal with.  The guy I had messaged with yesterday morning had said they would contact my doctor's office, but she said they hadn't done that yet because they needed to talk with me first.  Ugh!  So I asked if I could conference my doctor's office in so we could try to streamline this, but she said no because another department handles that.  So she confirmed what it was I was wanting to order and said they would try to contact my doctor's office.  Didn't sound very promising.  So as soon as we hung up I called my primary care's office.  The person I spoke with was super nice and helpful, and she said she would put in a request for the prescription and my doctor's nurse should be calling me back, if not today, then Monday.  Now we're getting somewhere (hopefully)!  I wish I had understood how all this works ahead of time - I could have started this process probably at least a week ago.  Oh well - live and learn.

My sister stopped by for a quick visit on her way home from visiting her daughter in Orlando.  We had some lunch and took a nice walk around the neighborhood (haven't done that in several days) and after she left I had one of my luxurious afternoon naps!  So great!  I thought I might sleep longer since I only had 5 1/2 hours sleep last night, but I slept the usual 45 minutes to an hour (somewhere around there) and woke up refreshed and ready to go!  It's funny because I used to take 5-10 minute power naps and that was totally enough.  I'm hoping I'll be able to get back to that some day, but for now I'm just thankful I have the freedom in my schedule to take long naps! 

​Our son invited some friends over tonight to watch the last episode of The Mandalorian, so I swept the floors and then I made pizzas and salad and we sat down to dinner around 6pm.  Then we watched the episode around 7pm, and then Tim and I watched a movie after that.  We have a wedding to go to tomorrow, and I had ordered the gift from Target so I told him I wanted to go pick it up tonight and not deal with all the crowds tomorrow.  So he graciously took me, and I was still feeling pretty good!  I told him so, and told him I'm feeling a little reticent to even say it because it seems as soon as I do I get a set back.  But I am feeling really happy about the way I've felt today!  It's almost 11:30pm and I'm just feeling really happy and hopeful - maybe I can start living a fairly normal life soon?  Emotions are so fickle - last night I was literally crying about how overwhelmed I felt about all of this, and today and especially tonight I'm feeling so encouraged and happy!  We'll see what tomorrow brings.  
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