Sleep > Writing a blog post at almost midnight

What in the world am I doing up this late?

Oh, yeah.  My anxiety is flaring.  Big time.

But I had a good day today.  It started out well.  I guess.

During the 2nd hour of church I worked on some Family History.  I have such a strong calling to search after my ancestors, and there is one line in my family where I am completely stuck.  At a wall.  Either this man saw a murder or he committed a murder and changed his last name in the process.  Pretty crazy stuff.  But I am committed to figure out, somehow, what happened and to find the rest of my ancestors.

I taught the Relief Society lesson today also.  It went very well.  The Spirit was so strong, and the sisters were responsive and it was just a great discussion.  I am so lucky.

But.  Here comes the gnarly part:  I can’t deny that my brain is changing.  And I don’t know what to do with this.  My brain is changing and other things are changing too and it’s scaring the crap out of me.  I am so saddled with grief that my only option is to take more medication to help manage my symptoms.  Who knows how these symptoms will progress is another thing that scares the holy crap out of me, too.

I guess I should be glad I had a good 3 years – and now I feel it’s all going downhill from here.  I’m so scared. What do I do about my brain changing and my body changing? This dizzy crap that makes me feel like I’m going to fall over? And then what if I can’t drive anymore?  It’s weird that these symptoms seemed to have come up from no where, if that makes sense.  I have so much anxiety in my heart yet as I sit here to write it all out I’m blocked.  I cannot seem to get it from my head to my fingers.  I don’t know how to process these emotions of what’s going on inside of me.  You know, my biggest fear (when I had the first surgery) was that when I woke up I was going to be different.  And, by the grace of Heavenly Father I wasn’t.  Yet, the brain is such an amazing thing I think I had no idea how magnificent it really is.  So, as I sit here typing, I’m wondering, “What can I do to take care of my brain better?”  Well, duh.  Sleep would be job #1. But what else?  I know there are tons of things out there about classical music and our brains – and I do listen to classical music quite often.  I should really research this and look into this more…I’m afraid that my brain, or at least my cerebellum, is tired.  Wouldn’t you be, too, after a freaking 13-hour long surgery?! I need to really take good care of it.

This seems like a dream.  This doesn’t seem real.  Like, I don’t, or can’t, believe that I am the person who has 2 brain tumors, who had a hysterectomy, and will never be a mother, because of these 2 rare genetic conditions that I just found out about only 3 years ago.  I guess looking at it that way, I’m only a toddler on this Rare Disease Road.  And, toddlers need a lot of love and support.  For the record, I want off the effing road, but I know that can’t happen.

So with all this being written, I am going to go to bed.  Turn on my iPod and listen to the Mormon Tabernacle Choir hymns and just sleep for tonight.  I know I can live in fear or I can live in faith.  These 2 emotions waiver minute by minute I’ve noticed.  So, when I tip over into fear, I need to do something quickly to get back in faith. That’s why I jumped on here and wrote for a few minutes so I can clear my head.  And to remember the great things about today.

(Nephew #2 had me draw a name out of a plastic baggie because we are doing “Secret Santa” and it ended up that I drew my name!) 🙂  But, we fixed it after all.

Good night.





5 thoughts on “Sleep > Writing a blog post at almost midnight

  1. Oh Dear, Heather! I am so sorry you’re not finding peace! I’ll write more later. I just wanted you to know that I am thinking of you & praying for your peace of mind (as well as body).

  2. I’m beginning to take a different look at others who have had life-changing medical interventions and think they were all smart for reaching out to a trained counselor or psychologist or some other professional. I used to think that we all had to work with our dealt hand the best we could with the resources we had. Now, even if someone is not trained in a certain disease, it is good that they can listen.

    Last week, I received and early Christmas gift, an UP24 – one of those wristbands that reports how many steps you take and how long you sleep. Well I knew I had problems sleeping, but after seeing the details on a screen, it’s a wonder I’m still upright. My 6 hours in bed is translating to 1-3 hours of actual sleep. It’s a small miracle that I’m functioning!

    When I’m up, I’m just up. I’m not frantically fretting about anything in particular. Throughout the day, though, my health test to-do list mentally pops up — even when I’m trying my darnest to block out all thoughts of my health! All I can figure, now, is that it is seeping into my sleep and nudging me awake.

    I have no answers – maybe I’m too tired of it all. Maybe it’s the lower immune system that gave me a cold at Thanksgiving, finally a week off, and now another cold at Christmas. So, without answers, I just repeat that I’m thinking of you and hoping that you, too, find peace…and sleep!

      • Hi Heather! Since our emotions have been a ride of ups and downs – I hope yours is an up today. Yesterday was worse for me – more of the 3rd month anniversary when we let our dogster go. Today’s the actual day, but October was a Sunday night / Monday morning, so yesterday was a hard one.

        My dear UP24 tells me that I’m still not sleeping. My body tells me I’m not sleeping. But having this data is priceless. I got mine at Best Buy because I have an 8″ wrist and was a bit wary that it would fit. When I saw it in person, the salesman showed me how the packaging is set up to measure your wrist. If you can fit your wrist through their packaging, the band should fit. It synchs with my iphone so I have my steps or snoozes right there. The Up3 is coming out soon and it is supposed to also measure heartrate. It will be more expensive, but the UP24 is going down in price.

        Have a good day! –Debbie

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