3.8.18 Throwback Thursday

It’s been a while since we really chatted about what’s been going on. February is easily my favorite month – birthday month, duh – but it always goes by entirely too fast. We didn’t do a big birthday bash like normal but we sold the heck out of some Super Bowl squares and over $1500 was donated to SunnyStrong. Long term disability kicked in, I got a bonus month of coverage on insurance, and clinic was a blast as always.

Round 6 of Radicava Ridiculousness wraps up today and nothing exciting to report other than Jaci pulled my needle out and didn’t faint – #winning. Girls State Basketball Tournament is always one of favorite getaways. We laugh, we mingle, and in the end we always end up with fun stories to share for years to come. Coaching was not my calling in life, but to be in the presence of those who spend their days enriching our youth in the classroom and on the field/court is inspiring. The stories told are priceless, the list of accolades would drown you, and the constant banter will keep you laughing. It’s no surprise that everything is a competition. I exceeded the legal limit of mexican food intake and I’m not even sorry. We took the scooter this year and learned all about accessible routes and Jaci made me stay on Turtle speed – zero fun, sir.

Baloo has been a little puny lately so staying in bed all day Sunday was ok with both of us. As you can imagine, San Antonio was all play and no rest so the Sunday Slowdown was a must though this raspy, sexy voice can stick around for as long as it wants. March is coming at us hard and fast, lots of celebrations, adjustments with LTD and insurance, and working towards getting the house finished. I promise to share pics soon!

I have a hot date with my girl Bailey today for some hair upkeep – being a girl is a lot of work. Still working on finding my “fix” for endurance, we have A LOT of wedding stuff coming up this summer and none of it is negotiable. Trying a new supplement – Protandim Nrf2 – and drinking a double Spark & Rehydrate concoction everyday to function.  Thanks for the suggestions and research, I love that y’all are part of my war on ALS.

Couple of exciting announcements and upcoming events for SunnyStrong, but I’ll tell you all about those tomorrow 🙂

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!

2.8.18 My Village

“Train up a child in the way he should go, and when he is old he will not depart from it” (Proverbs 22:6).

I have been blessed with an elaborate, intricate circle of family and friends that would take years to decipher and discuss. All of these blessings, memories, and relationships collide one day a year, on my birthday, and it’s insane to physically see and feel all of the love – My cup truly runneth over. Thanks to the modern age of social media, cell phones, and calendar reminders we are able to remain connected and involved in each others lives and I thank you for remaining part of my village. We share a story together, and I’m a better person for it.

It was a wonderful birthday, much lower key than my norm, and I was blessed with hundreds of  well wishes, encouragements, calls, funny memories, hugs, and even some beautiful singing. 100% Spoiled rotten. We had some winners on the Super Bowl Squares, I was surprised at class with this adorable cupcake cake of Baloo, and spent the evening with friends I consider family and my favorite drink – VODKA! It was a great day.

31, so far, has been eventful. Baloo and I slept almost all day Monday and got up just in time to catch Uncle Bronson before he closed up shop -if you need a chiropractor, go see Dr. Lester.

Tuesday we got up “early” (11:45 AM) and headed to Soleo to get accessed and finish out Round 6 of Radicava Ridiculousness. We’re trying a new dressing that is so fashionable I can barely stand it BUT hopefully I won’t have the reaction this time. Landed on my butt when I left, balance is a tricky thing, especially when you’re good and chiropractor sore.

Wednesday I had a hot date with Cunkle Sam (Cousin/Uncle) and we totally nerded out over Brous family pictures, we both love love that stuff. So cool to see so much of your family’s history in photo form. Excited to work on that project with him. Landed on my butt, again, in the restaurant parking lot this time completely embarrassing myself. Going to be super sore very soon. Maybe I’ll remember how to remain upright before my next birthday, until then we’re thankful for the minor falls – no more broken noses please and thank you – and ibuprofen!

Thank you for being part of my village!

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1.30.18 Three is my Favorite Numba

Yesterday was a big day for a couple of reasons:

1. Round 5 of Radicava Ridiculousness is rockin right along – 4 days down, zero excitement to report.

2. It’s officially my last week of Short Term Disability and I celebrated by sleeping until 2PM – homegirl was sleepy.

3. Our house is finally getting worked on which means we’re that much closer to sanity, and yes, I slept through it.

4. Y’all sold out Super Bowl Squares board number 2, hooray! Board 3 is up – $10 per square, 2 square minimum – let’s sell it out, hurry! Tell a friend!

Thanks for celebrating with us! Turning 31 on Super Bowl Sunday is going to be exciting!

5. January is coming to a close, 2018 is working out to be a fun year of firsts, and SunnyStrong has some awesome things in store for all of our favorite knuckleheads!

Round 4, 8&9&10

ALSFRS-R: 35

Round 4 is done.

Round 5 starts 1/26/18

No news is good news, and thankfully no side effects. Other than to the tecaderm, but we knew that. Also, I earned my “dot” where the needle goes so accessing is even easier.

see it? see it? see it? another round of radicava ridiculousness complete!

Round 4, days 4 -7

Kenneth knocked out days 4&5 then I brought in a celebrity nurse for days 6&7 of this infusion.

Wonderful best friend getaway in Austin for a couple of days of wedding planning and catching up. She completed both infusions and deaccessed the port without passing out, winning! ALS is teaching all of us new things. Of course she snapped it to the other girls who didn’t react as gracefully, sorry I don’t have photos of those.

Came home to a complete mess, thank goodness Kenneth was home to take care of everything. House flooded, water everywhere, and now fans and dehumidifiers have moved in. Thankfully we have great friends that came to our rescue. Sid and Zach at DMR Services took care of us before we moved in and now they’re saving us again! Can’t wait to show y’all the finished product, until then just trust me when I say that I’m as discombobulated as I look. Homeownership is fuh-uhn!

Round 3, 9&10

and just like that, we’re done with round 3. Round 4 starts 12.29.17.

ALSFRS-R Scores:

12.10.17: 34

11.16.17: 35

10.19.17: 34

according to Radicava.com :

ALS Functional Rating Scale–Revised (ALSFRS-R)

The ALSFRS-R consists of 12 questions that evaluate 4 domains (fine motor, gross motor, bulbar, and respiratory function) in patients with ALS.1

  • Items: speech, salivation, swallowing, handwriting, cutting food, dressing/hygiene, turning in bed, walking, climbing stairs, dyspnea, orthopnea, and respiratory insufficiency
  • Each item is scored from 0 to 4
  • Higher scores represent greater functional ability

Timeliness is essential

Because ALS can progress rapidly, beginning treatment can be important in slowing decline in the loss of physical function. It may be important to let patients know that1:

  • Radicava® is an ongoing treatment for ALS
  • It is not a cure
  • It does not restore function
  • It can only help if treatment is continued as directed, even though they may feel like it is not making a difference
  • Individual results may vary

How long do patients stay on Radicava®?

  • The duration of treatment with Radicava® should be based on the professional judgment of the healthcare provider in consultation with patients and caregivers. Work with patients to decide how long to continue treatment with Radicava®.

Can patients receive Radicava® if they are pregnant?

  • There are no adequate data on the developmental risk associated with the use of Radicava® in pregnant women. Based on animal data, Radicava® may cause fetal harm. Advise patients to notify the appropriate healthcare provider if they become pregnant or intend to become pregnant during treatment with Radicava®.1

obviously Kenneth and I have some decisions to make if we’re going to get us one of these sweet additions one day, but until then we are enjoying being Uncle Kenneth and Aunt Sunny.