Sunday, November 5, 2017

1:00am Writings - My New Normal

It's 1 o'clock in the morning... But I'm up and writing. God and I seem to have an unending date every day at 1:17am! So here's this week's update!

I'm at 2 weeks of radiation down. 4.5 weeks to go...

Things I have learned... Steroids are awful. They have so many crazy side effects! But I know they are beneficial, especially in my case. With having radiation to my head, I’ve been experiencing increased swelling in and around my right eye and horrible headaches. The radiation is causing intracranial swelling which is compressing on all sorts of nerves and blood vessels, which caused me to be in the most excruciating pain I have ever been in before on Monday. I was in so much pain I told Michael I literally just wanted to die. I’ve given birth to three babies without an epidural. I’ve endured kidney stones which I think was worse than labor. I would have preferred 10 kidney stones while giving birth, over the pain I was in Monday.  That was a really scary moment for me and the rest of my family to see me in such pain.  Michael rushed me to the ER, where they gave me a shot of morphine for pain. 

The next day they decided to put me on a different steroid that’s longer release and something I have to take 3 times a day instead of once in the morning, as the previous steroid was wearing off by the time I’d have radiation and the internal swelling would occur at night, causing the pain. While this steroid seems to be working (as long as I’m taking it at very specific times), it unfortunately is wreaking havoc on my body. My body and mind is exhausted, yet I’m unable to sleep. I’ve slept about 16 hours total in the last 5 days/120 hours. I’m able to sleep from around 10pm-1am and then I’m up the rest of the day... 

In a way, it’s been kind of a blessing, because I get some things done while everyone is sleeping (like making elderberry syrup, snooze tincture - I’m willing to try anything for sleep!!, homemade bread, etc), and I get a good length of quality time with the Lord. I’ve started doing 3-4 various bible studies and I’ve picked back up on writing my book that I’ve considered writing for years. Maybe God will use this time where I may finally complete it! 

But while I’m able to accomplish so much, I know my body is becoming weary and my brain is feeling all the affects from the radiation and the lack of sleep. I’m becoming more forgetful and confused and struggling with basic concepts. It’s weird... It’s like mom brain on steroids. Literally! 

Despite all of this, I find myself just consumed with joy. I’m constantly looking for things to be joyful about because I know how easy it is to dwell in our current situation and see all the bad and I do not want to be consumed with that. I know that despite our circumstances, God is still so very good!! And we are so, so blessed by Him. 

I have some great doctors who truly care... Not many doctors ever text you throughout the week just to see how you’re feeling. What a blessing it is to have a doctor who does this for me. 

My daily radiation time has become such a huge blessing and joy for me. I’m able to sit and talk in a women’s waiting room with other ladies going through cancer. I’m the youngest one in there by about 30-40 years usually, but it’s such an encouragement for me to talk to these ladies each day and I cherish the wisdom they speak of. I go into the radiation room and am literally strapped to the table with a face mask to prevent my head from moving at all during the radiation. This time has been so amazing to me as I lay there, giving back to all those who have prayed for our family over the years and I lay there in prayer for so many people who have shared their prayer requests with me. (If you have a prayer request, I would absolutely love you to email me at michaelandamanda@gmail.com or contact me on Facebook. I would LOVE to pray for you!) 

I have found that through all of this chaos, God has drawn me closer to Him than ever before and I’m just so overjoyed and truly happy... Our whole family is constantly working on choosing joy, as well. It’s been hard for some of my kiddos who already struggle with change and depression and anxiety. This month, during November, we are really focusing on GRATITUDE for how good our Lord is and we plan to use this month to give back to Him by helping others. Whether in prayer or in any other way God sees fit - our kids are thinking and praying for God to give them ideas of random acts of kindness gestures we can do each week and they are just so excited to give to others!! What better way to prepare for Thanksgiving and Christmas than aligning our hearts to give and be thankful?

We are especially thankful for each of our followers, supporters, prayer warriors, family (church and blood) and friends. Your prayers have helped sustain us on the hardest of days. Your monetary gifts have helped ease the burdens of all these medical appointments. Anytime I start to worry about our finances, we get a random check in the mail or a donation on our GoFundMe and it’s just a constant reminder again, that God is good and He will supply ALL our needs and He reminds me to stop worrying!! 

I know so many have asked how you can help tangibly, and I really don’t know right now... Your support and offers truly mean a lot. Really, your prayers are so appreciated and I will try to update once a week with specific prayer needs. 

Here are a few for this upcoming week:

  • For my kids... This is all a lot to endure for them. I’m always the one taking care of them and I’m always home with them. With me being tired and struggling with pain, I’m not able to as much for them and I’ve had to rely heavily on my mom and sister and Michael. They are a huge blessing! But I know it’s hard for my kids to not see me being “normal” and to have me leave everyday for an hour or so for radiation. They’re all still reacting in many different ways to all the change and while I know it’s normal and okay, it’s hard for me to see certain ones struggling so much... 
  • For Michael - it’s hard for him seeing me in constant pain. He’s so incredible though at taking care of me. Such a blessing to have a husband that loves me and cares so much!
  • For my steroids to allow me to sleep a little longer than 2-3 hours a day and for the exhaustion it’s putting on my body to not wear down my immune system.
  • For the amazing people I meet every day at radiation. For their bodies to heal completely of each of their different cancers. 
  • For wisdom for my doctors in knowing what things to do for me, as I’m pretty much a guinea pig/experiment as they’ve never treated this before. 
  • For the deep, internal pressure in my head to subside. While the headache pain has decreased from Monday, I still struggle with the normal "dull, aching headache" I've had for the last 6 weeks. But there's now a new kind of "pain" which is more of just internal pressure. I'm sure it's from the intracranial swelling, but I'd love for that pressure to be minimal...
  • For God to be glorified through our entire family's circumstance. No matter the outcome. 

4 comments:

  1. Prayers with love and hugs.
    I would like to share this if it's ok with you������

    ReplyDelete
  2. Continuing to pray, thank you for more specific ways to pray...as always, let me know how to help tangibly too. Love you guys, Ariele

    ReplyDelete