Wednesday, December 25, 2013

Photo: Thank u amazon for the overnight delivery of my new sleep phones. Hoping these babies help me sleep through the night. Now to decide which sounds to use tonight. 
My SleepPhones Review

So sleeping has been a real issue for me since I have been diagnosed with a brain tumor.  In general I can sleep at night from like 11 - 2am but then I lay away from 2-4 or 5 and then if I am lucky get to sleep again from 5-6:30.  Part of my problem is that my mind is wandering, part of the problem is that Jamie my poor husband who has so much on his plate is finally falling into a deep sleep and snoring so loud it keeps me awake.  SO I googled and found the SleepPhones, marketed as pajamas for your ears.  I ordered them on Monday, December 23rd through Amazon and was so happy to see the UPS guy deliver them Christmas Eve around 4pm.  The UPS guy was NOT having a good day and practically tossed the package at Jamie from half way up our sidewalk.  Mr. UPS if you are reading this, you may be mad that you are working at 4pm on Christmas Eve.... I just was told I have a brain tumor and this little package you delivered will hopefully bring me some much needed sleep.  

SO... i had to decide which sound to use.  The SleepPhones work through Bluetooth with my iPhone and an app.  I had a creeepy piano, white noise or waves to pick from.  I went with waves because with all my meds I feel a little like I have sea legs all the time.  I find myself walking down the hallway and will suddenly walk right into the wall.  I try and bring myself back to a happy place where Jamie and I went on a cruise before we had Owen and these sea legs were something fun and exciting after spending a week on a cruise with a bunch of friends drinking without a care in the world.  These current sea legs aren't the same but it's still nice to pretend.  :)  

Next, i had to decide if I wanted to start the night with the headphones on right away.  I usually sleep fine from like 11-3 and the batteries are only supposed to last 6 hours so I figured I would go to sleep without them at 11pm and then if/when I wake up, put them on and hopefully doze back to sleep to the sound of the ocean.  I fall asleep fine at 11 and wake up and look at my clock, damn it's only 1:10am, not a long stretch at all.  I woke up because my left shoulder was cold.  Now to any normal person this would not be a big deal BUT since I am now deathly afraid of every tingle or thing that I feel waking up with a cold shoulder means I must do a full and complete check on my body that included EVERYTHING i could think of such as: blinking both eyes to check vision, squeezing both fists, moving all fingers, making sure both feet and all toes work the same and on and on and on.  After all this; entire thing started with me waking up with a left foot that was asleep.  After doing a full methodical and very medical check I decide that perhaps my shoulder is cold because I am wearing a tank top and my left shoulder is the only part of my body not covered by my blanket.  So I proceed to slowly cover my shoulder and then spend the next 20 minutes laying awake in bed making sure my arm is warming up at an appropriate pace.   Agh, my mind is out to get me for sure!  

Well by this point i can see that Jamie is in a deep sleep from how loudly he is snoring.  He NEEDS sleep, he has been through the wringer lately.  My heart is truly breaking for him and I feel worse for him that I do myself, he has a lot on his plate.  Above and beyond learning his wife has a brain tumor here are a few other things that we just can't get to go his way.
  #1 - BOXERS - the poor guy has been asking me to get him new boxers for months, I FINALLY ordered him like 8 pairs from Old Navy in size Large, same size he always wears, we wash and dry them and they are all too small.  Thank you SO much Old Navy for resizing your boxers.  So he ran to Target on Monday and grabbed himself two packs of XL Hanes boxes.... we wash and dry them... too big.  Boxers, can the guy just get a pair of boxers that fit?!
 #2 - His lack of a muddler.  He wanted a muddler for Christmas, it's the only thing he asked for.  He knew he wouldn't be getting one since I wasn't doing any shopping from the Neuro ICU at Froedert so at Target on Monday he decided to just grab himself one.  Well they were gone, rain check tag hanging in it's spot.  Not a big deal but all he wanted was a stupid muddler to make himself an old fashion and even that didn't pan out.
 #3 - Jacob - Jacob is STUCK to him like GLUE!  I feel terrible.  I am not allowed to lift Jacob at all so Jamie has had to do everything with him and now Jacob needs to be with him non stop.  If Jamie leaves the room Jacob instantly screams a scream I have never even heard.  It's wearing on Jamie, he's handling it as best he can but it's a lot on top of a lot already.  

SO I WANT SO BADLY FOR JAMIE TO GET SLEEP, he deserves it!  So last night he was finally getting it and snoring SO loudly.  I kept turning my wave volume up and up and up until finally the sound of his snoring was gone.  Well then I lay there with my eyes closed and instead of a nice calming wave sound what I was left with was a deafening loud wave that made me feel like I was floating in a huge ocean of 50 foot waves in a tiny sinking boat.  NOT soothing at all. 

BUT the wave sound put me in a Zen mood.   The night before Jamie's snoring led me to send this exact text to his older brother Andrew at 11:22pm regarding Jamie and his snoring..
{I want to grab his nose and pinch it so hard that I pull it off and then whip it at the closet door and hear it thunk and slide down to the floor}....please remember this could partly be my medication talking. :)

With the waves playing in my ear instead of wanting to calm bodily harm to him I found myself reaching over to scratch his head to help soothe him into a calmer sleep.  This immediately led him to sit straight up in bed freaked out that something was going on with me and that I needed help, why else would I be touching him like that.  I told him that I was just trying to help him sleep,  I think he is still confused by the whole thing. :)

I was then awake until about 5am when I drifted off to sleep for about an hour.  So overall, the SleepPhones weren't a total life changer but it helped my frame of mind.  The last few nights I have found myself sitting in the dark silently thinking and crying and having the calming waves seemed to keep me in a happier place which is about as good as I can ask for at this point.  I hope each night gets easier for me.  Nighttime is just plain scary for me right now and I hate it.  Last night for the parts that I was asleep I could hear the voice of one of the paramedics stating my name over and over in my ear.  It was like he was standing by our bed saying my name in the same calming tone trying to keep me conscious.  I mentioned it to Jamie in the morning and he confirmed that one of the paramedics was doing this to me the night i was taken by ambulance.  It was eery and i hope I don't get a repeat of it tonight.  

Wow, this ended up being really long.  Jamie is snoring on the couch right now.  We should really get to bed.  If you made it through this whole post, thank you!  

We had a nice Christmas, emotional and exhausting but we were together as a family.  I had lots of smiles and lots of tears today, much to be expected.  Our goal for tomorrow is to relax and get some normalcy back in the boys lives.  They seem to both be greatly effected by all the recent events and it's breaking my heart.  Trying my best to get back to "normal" as best we can.  No visitors, we are locking our doors tomorrow and having some good family time with all our new Christmas toys.  Maybe even a whole house nap around 1pm!

I get my staples out at 9:30 on Friday.  YAY!  In case you are counting that will be FOURTEEN FULL days without washing my hair!  It will feel SO good to hop in the shower and let the water pour on my head.  We may not have the results of the biopsy on Friday, may have to wait until next week for that but hoping and praying like crazy they give us good results on Friday!  

Here are a few photos from our Christmas.  Thank you again so much for the outpouring of love.  Everyone's kind words and messages are keeping us going!

Off to bed, hoping for a good night's sleep!


Jacob worked hard all night to try and make his hair look worse than mine, he loses, he still just looks cute.  


  1. I listen to ASMR videos on youtube pretty much every night. They're of people whispering about pretty much any and everything. It keeps my brain from running away with my useless anxiety. It might help you too. Gentlewhispering is my favorite channel. She even has a whispered review of sleep phones, lol. I hope you can get some good sleep soon. <3

    1. Angel - totally checking out those videos asap! Thanks for the tip!

  2. You always look good! YOU'VE GOT THIS!!!!!!


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