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Thursday, August 12, 2021

Another busy week...

Tomorrow we take Peter to school so prayers are appreciated.  We are all feeling a healthy mixture of nervous, sad, excited, worried, hopeful, etc. I know this is normal and I have been praying for a smooth transition for Peter for months so now I just have to "let go and let God" as they say.  

I complained in my last post that the school did not email us about the bill which I thought was odd and annoying.  My cousin text me to let me know that she recalls getting emails about tuition payments (her son recently graduated from NC State) but that the student has to go into their Pack Portal and update their settings so that parents get alerts about tuition payments, grades, etc.  I thought we had done that several months ago but when I logged into his portal none of those settings were selected.  So, I immediately remedied that and hopefully we are good to go now.  Thanks, Tammy! 

The kids have been pretty busy this last week.  Sarah's completing her summer work and working at the pool and spending time with friends.  Peter's been spending a lot of time with friends hanging out "one last time". Last night they were both gone and as Dan and I sat together eating dinner Dan said, "Well I guess this is how it's going to be - just us."  And I said, "Well, we are back to the beginning. It's like the good old days when we were dating and first married."  Dan's response, "It all seemed more exciting then."

And I get exactly what he means.  We had our whole lives ahead of us: marriage, a house, kids, etc. And now we are sitting on the other side and looking at each other like "what now?" But don't worry about us - we will get it figured out.  Life is just a series of transitions and we are slowly moving into the next phase!

Saturday, we all went to Mass and afterwards went to dinner at Cibo Trattoria downtown.  Peter selected the restaurant and it  was delicious. All four plates were clean and we managed to put away two delicious desserts!


Sunday was our last lunch together at mom's house for a while as Peter won't have his car at school and we aren't exactly sure when he will be home again.  My mom decorated the table in school colors - red and white and she wore her new N.C. State gear.  Isn't she just the cutest???

And I made, at Peter's request, Ding Dong Bundt Cake.  I know I've shared the link before but I'm sharing it again because this cake is so yummy!

Sarah had her senior photos taken for the yearbook on Tuesday.  She asked me to help her curl her hair so I did what any non-hair-curling mother would do.  I frantically texted our stylist and asked if she could do it and thankfully, she could.  I'm excited to see how her picture turns out!  

On Monday morning, I had a sleep deprived EEG.  I have recently had to switch to the generic version of my MS medication and have been having a mild flare of some of my old symptoms. I've had to switch because the copay assistance programs that were paying for my $6,000 a month medication were halted when the generic became available.  The price did go down on the name brand once the generic was released but it was still going to cost me $1600 out of pocket a month.  The generic is $800 a month but thankfully there is a copay assistance program for that one as well so I am only paying $20 a month BUT - it isn't working as well as the name brand.  

In addition to trying to get approved for the name brand (which so far isn't working) my neurologist wanted to do the EEG.  She said that I have a "venous angioma" in my brain.  She said it's been there my whole life and posses no problem or threat but it's location near the edge of my brain my be causing mild seizure-like activity in my brain which may be causing the symptoms of my flare. So she wanted to sleep deprived EEG to see if we could replicate a flare and see if that's what's going on.  

I was assuming that "sleep deprived" meant I would  go in at midnight for the EEG so I was shocked and dismayed when the nurse who called to set it up informed me that I would need to be up ALL NIGHT prior to my 7:45 AM appointment.  I said, "UP ALL NIGHT?? I CAN'T DO THAT!!!"  

She laughed and scheduled the appointment anyway and I, a person who is in bed nightly at 10:00 PM and asleep nightly by 10:04 PM, had to find a way to stay up all night.  

Dan stayed up with me until 12:30.  I had to force him to bed by reminding him that he was my ride to the hospital and that he also had to work all day on Monday.  Peter stayed up until his normal 2:30 until he finally went to bed.  Sarah was having a reaction to our cat and had to take a Benadryl and went to bed earlier than normal for her.

Staying up all night was a little easier than I thought it was going to be. Between 10 and 4, I drank 4 cups of coffee and  I processed a bunch (6 pounds without the juice and seeds) of ripe tomatoes and made spaghetti sauce. I cut up and canned a bunch of jalapenos and I even made several jars of relish.  After that, I settled into my chair around 3:30 AM and watched TV, and TikTok and next thing I knew, it was time to get in the shower.

I was very glad Dan drove me to the hospital because I was  groggy and out of it.  He dropped me off and headed back home to work and I headed inside to do the Covid check in the lobby.  I was having a hard time listening to and answering their questions.  I got through the lobby and headed to the bathroom where I proceeded to miss the hook on the door and my purse crashed to the floor.  I picked it up to make sure my phone wasn't broken and realized in my sleepiness I left my phone in the car.  

I needed my phone to call Dan when it was over so he could pick me up.  I left the bathroom and headed down the hall towards Diagnostic Neurology and saw a bank of phones of the wall. I picked one up to call Dan on his cell so he could turn around and bring my phone back.

I struggled to remember his phone number but finally did.  But then, I struggled with the phone.  It was a hospital phone after all and I couldn't figure out how to get it to make a call out.  In my dazed and confused state I was never going to be able to figure the phones out so I decided to head to my appointment and I would just have someone call Dan after it was over. 

I checked in and struggled to answer questions like "what's your address" and "what's your birthday". I was laughing at myself because I really had to stop and think. And then as I was answering, I felt like I was slurring my words.  I do not recommend staying up all night at this age!  

I sat down to wait for my appointment and chose a seat in front of the door. There was a window by the door and I just knew that Dan was going to realize that I left my phone and come into the hospital and try to find me and I wanted to be able to see him if walked by.

And sure enough! About 5 minutes later I could see him walk past the door.  I hopped up and opened the door and called his name.  He was trying to find me and he had my phone! Apparently he had texted me at a stop light to see if I made it in okay and heard my phone. So he came back, parked, and made his way into the bowels of the hospital to find me.  

The EEG itself wasn't a big deal except that it took the nurse over 30 minutes to place the 21 leads on my head.  She had to measure then mark through my hair the placements and then had to place them all with some substance that seemed to be part paste and part lard. The test itself seemed to be shorter than the placement of the leads. 

After it was over, the nurse removed all the leads and took a wet wash cloth and tried to scrub some of the paste/lard out of my hair and then dismissed me.  I was walking through the halls to the parking lot looking like this:

I came home, took a little nap, did some laundry and a few other things around the house, took another nap and we then we all went out to eat because I was too tired to cook. I then came home, fell asleep in front of the TV at 8:00, forced myself awake and upstairs and to bed at 10 and slept like a rock until the next morning. Remember the good old days of being able to be up all night and still function the next day?  Those days are long gone for me.

And that's what we've been up to this week! If you've made it to the end of this post, thanks for reading!  And, if you can spare some prayers for us for tomorrow, I would appreciate it!



Madeline said...

Praying for you all!!! May this year be a blessing for you! The combo of the paste/lard description and that photo made me laugh out loud. Hopefully you will not need to repeat such a test and you can get the medication you need at a reasonable cost going forward!

Gigi said...

Good luck tomorrow! I should have thought about that - yes, the college will tell you absolutely nothing unless Peter okays/shares it - which is beyond ridiculous in my opinion, but it is what it is.

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