2.15.18 Paula the Port

Monday I had a hot date with Nina the Great at UTSW for a punch biopsy for nerve fiber layer density, kachow!

This donation was for a couple of friends of my cousin Tyler’s who have a lab at UCSF and as you know, research is always in style. Appointment was painless and I got to see some of my favorites. One major item on my “to do” list while I was on campus was to catch Dr. Trivedi and discuss my undying love for my port – now named Paula – used for radicava ridiculousness. Per usual, with new drugs comes differing opinions on administration. My friend Meg is a badass and not only started with a port rather than IV, she was able to get certified to access at home. My neurologist, Dr. Heitzman, is more conservative so he had me go through the IV routine prior to surgery so that if I was allergic or had a reaction it would happen before surgery. Some doctors are recommending picc lines. Part of my job in this war on ALS is to advocate for myself and others who are fighting this battle with me. For me a picc line wouldn’t be an option: i’m waaaaay too crazy for that. Y’all know I would have pulled it out doing something ridiculous, like rolling over in bed, so having Paula the port completely internal means sloppy Sunny is less likely to screw it up. To each their own, I can only voice my own experiences, but you don’t know what you don’t know, right?

I forgot that Monday is ALS clinic day at UTSW. I’ve discussed before my reasoning for attending Texas Neurology’s ALS clinic and going to UTSW for research. Because I don’t attend this clinic I didn’t readily know the patients but y’all know me well enough to know I made friends while I was there. Most were curious about Phil, and it was fun to meet new pALS. This community is full of amazing people though we’d all give anything to jump ship.

Thank y’all for reaching out and checking on me after Monday’s appointment. I’ll soak up all of the love and attention, always. Friday is clinic day for me, yippee! Hard to believe I’ve been going for 3 years now and how much has changed since that freak snow storm during my first appointment. Fingers crossed we’ll never have to go through that insanity again!

Gross True Love

How I Live Now: Life With ALS

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At my most recent clinic, the nurse pulled out my mic-key – the feeding tube that allows access to my stomach – so they could give me a fresh one, and all of my breakfast came out like a volcano. Before the nurses could even react, Evan dove in and covered the hole with his bare hands. Remember, my feeding tube version of vomit was pouring out. Nothing grosses him out when it comes to me. Nothing. And that is true love in all its gross glory.

Please enjoy the illustration below, and have a happy Valentine’s Day!

J/K about the illustration. I love you too much to do that to you. (insert adorable, mischievous grin)

Xoxo,

Rachel “The Volcano” Doboga

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2.13.18 Watch Him Work

Ok y’all know how busy Kenneth and I are every day, but what the heck are we even doing to be so busy? What do we have to show for all of this busyness? Why are we even so busy? Well we’re going to slow down, as best as we can, and make our marriage a priority this season of Lent. No, we’re not Catholic but we both enjoy a challenge and a clearly devised plan of attack so Lent is attractive to both of us.

“The happiest of couples are those who make their marriage a priority and are committed to improving their relationship, in big and small ways, day in and day out. A happy marriage takes work. Lots of work. And a healthy dose of sacrifice too.” – Catholic Match Institute 

Since Lent officially starts tomorrow, February 14th, and goes through March 29th we are excited to share with y’all, our village of supporters, our plan towards a life where our marriage is our top priority, allowing God to uses our trials and tribulations to bless us and our village around us. Are you ready to watch him work? Are you ready to see how God uses these 44 days to unite us for his glory? I’m excited, we’re excited.

After LOTS of research, polling of friends and family, and discussion we agreed on the following:

  1. Daily Prayer Cards from Your Modern Family to be discussed nightly
  2. No take out for dinner which is going to require planning and grocery shopping on our end – something neither of us is in the habit of currently

Please pray for us. Pray for our hearts to be open and receptive during this time. Pray for discovery and strength to trust his revelations. Pray for focus and commitment to this project, our marriage, our hearts, and our bellies. Please send us recipes that you can’t live without, variety isn’t our forte so save us from sandwiches and hotdogs. We are excited to share this journey with you and can’t wait to see what God has in store.

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