2.20.18 Losing My Mind

So remember when our house flooded in January? Yeah we’re finally getting flooring done this week, thank goodness. It’s been exhausting and dirty and exhausting but I cannot wait to see the final product. Determined to stay optimistic, dammit.

ALS Clinic on Friday was fun and marked my 3 year anniversary of being in the clinic at Texas Neurology. Insanity. I had a cute date, we were early, surprise visit from a cousin, got to sit next to Tom, and we handed out all of our valentine’s treats.

Everything was good, the same or better. I lost two pounds but I’m spending most of next week in San Antonio with Jaci eating all of the mexican food so surely I’ll find them. Promised to finally complete voice banking by next appointment in May so I just need to get it done – it’s just talking, which y’all know I do a lot of, so I don’t know why I’m having such a hard time committing to it. I had 3 backwards falls two weeks ago so I asked Dr. Heitzman what to do about those and he told me to stop it, so that’s what we’re going to do – stop falling. Sound good? Breathing was better, but we went ahead and ordered the BiPAP machine since my insurance is changing soon. I have put off ordering it in the past because it’s an automatic disqualifier for clinical trials and that has been my priority for a while. Because radicava is so new it is also a disqualifier for clinical trials, so why not have all of the toys? Um, PT agreed with no more falls, OT wants me to stretch daily, “The Boss” Sheliah helped me apply for student loan forgiveness based on disability – #winning – Research Todd has a new study starting soon with Answer ALS, and it all started with a big bang, hey!

I started taking Protandim NRF2 so we’re monitoring any improvements there. Had an issue with the Nuedexta manufacturer but we got it figured out. Left Dr. Heitzman with homework to figure out how I can find enough energy to enjoy all of the traveling and wedding extravaganzas that are on the books, so we’ll see what he comes up with. No body has time for exhaustion, my girls are getting hitched! I’m working on scheduling another punch biopsy, minor misunderstanding on storing procedures so we get to do it again, yay!

Per usual, we followed clinic with margaritas, an entire pitcher of them. Jess had never been to Joe Ts so we fixed that as quick as we could.

Round 6 of Radicava Ridiculousness starts Friday and this time Jaci is the lucky one to deaccess me so that’ll be fun. Pray for her. What else? So far we’ve done well with our Lent plans, thank you for the recipes – keep’em coming. Spent yesterday with my sweet nephew and his mama and my mama, he’s funny and walking and always hungry. He should fit in well around here. I’m sure I’m forgetting something or someone, losing my mind and everything in it.

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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2.8.18 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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2.5.18 Winner Winner Winner

THANK YOU for playing! Congrats to the winners and we’ll be doing this again next year! And THANK YOU to those who have donated their winnings back to Sunnystrong!

1st Quarter – Patriots 3 Eagles 9

  • Board 1 Winner – Mary Brous
  • Board 2 Winner – Victor Sanchez
  • Board 3 Winner – Thindy Sims

2nd Quarter – Patriots 2 Eagles 2

  • Board 1 Winner – Willie Boyd
  • Board 2 Winner – Anna Sewell
  • Board 3 Winner – Kacy Railsback

3rd Quarter – Patriots 6 Eagles 9

  • Board 1 Winner – Tant Shepherd
  • Board 2 Winner – Rhea Jackson
  • Board 3 Winner – Mikel Martinson

4th Quarter – Patriots 3 Eagles 1

  • Board 1 Winner – Zak Healy
  • Board 2 Winner – Wendy Epley
  • Board 3 Winner – Mason Merritt

2.4.18 Whoa

Whoa, you guys are insane! Kenneth and I discussed doing a Super Bowl Squares board since my 31st birthday fell on Super Bowl Sunday with the expectation of it not selling out. You guys exceeded our expectations, three times, and as a result $1500 is going to SunnyStrong. We can’t wait to see who the quarter winners are for each board!

Y’all know I love birthdays and celebrating, especially celebrating my birthday, so the change from a traditional party to a charitable endeavor was a major trial for me – thanks for making sure it was a successful one! I told you the other day that I know without a doubt that 2018 is going to be epic, and y’all confirmed the first step in that direction with this fun collaboration.

If you ordered shirts, I’ll get them pulled and in the mail this week. We’re brainstorming a spring SunnyStrong event and details and new shirts will be available for ordering soon. If you have any ideas or suggestions please send them our way – we’re pretty much game for anything that allows us to love on y’all and spend time together. Since I only get to turn 31 once, I’m thankful do it up big raising $3000, giving ALS a run for it’s money, and sharing this beautiful life with each of you!

Happy “Sunny’s Birthday” to You!

Board 1 Complete

Board 2 Complete

Board 3 Complete

2.2.18 Trevor Noah

“Traveling is the antidote to ignorance” – Trevor Noah

Pretty excited about today’s agenda. When Kenneth and I first met we traveled a lot, weekend trips, weddings, etc. and now we still go more than I’m sure he’d prefer to, we don’t get many weekends of unrushed roadtrips. I’m looking forward to the conversation, the mandatory stops at Buccee’s, and for the cathartic relief of being in car together.

I have learned so much since meeting my South African knight in golf gear, and the lessons continue daily. I often take for granted my small town raising, or menial knowledge of the world around me, but Kenneth remains patient with my convictions and opens my eyes to the world outside of Hico, America. I can remember the night his sister introduced me to Trevor Noah, we were at the dinner tables at his parents laughing hysterically from this video:

Casually we started watching Trevor Noah’s Netflix specials and keeping up with him through social media. Randomly in an ambien induced haze I had the genius idea to see what his tour schedule was, sure of the fact that Texas, much less our travel area, would be on his agenda. God really has the greatest sense of humor, and our tickets were purchased once I sobered up – ambien is a fun drug but not great for my online shopping habits. Keeping the secret from Kenneth proved to be the absolute hardest part but his reaction on Christmas was worth the struggle:

So we’re off to Austin, to play in a city we both love, to slow down and enjoy some us time. We’re excited to brunch at South Congress Cafe where he proposed not all that long ago. Hopefully we’ll get to hug some necks along the way there and back. I’m excited for a weekend with my favorite South African.

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2.1.18 New Year

Starting 2018 on January 1 is like starting a diet on Monday – likely to fail and way too much pressure. So now that we’ve had a month of scratching out the ‘7’ on our dates and correcting to ‘8’ it’s time to really get 2018 going.

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We learned a lot in 2017: bought a house,started a new drug, traveled, threw out the first pitch at the Rangers Game, brought Phil on board, flipped my scooter – twice, got a port – then got it fixed, lost a sweet soul, and the list goes on and on and on. Thank you for being a part of it, for loving and supporting us, and for sharing out laughs and tears as we navigate this disease together.

So what does 2018 have in store for SunnyStrong? Hopefully a balance of life and rest – but surely by now you know better than that. Plans to get us filed as a charitable foundation are in the works – charitable to whom; what should be our focus? Weddings galore – Kenneth and I are excited to celebrate! Turning 31 on Super Bowl Sunday – how nice of the NFL and Justin Timberlake to throw a party for me 🙂 Another fun year of marriage, loving on those around us, giving ALS a run for it’s money, settling into our roles as “Uncle Kenneth” and “Aunt Sunny”. Maybe I’ll get ordained? Maybe I’ll find a new hobby in my new found free time? The possibilities are endless!

So cheers to 2018! Glad you’re on board for the January “Soft Opening” and February kickoff. Go get’em, Tiger! I’m calling it today, right here, right now: 2018 is going to be EPIC.

Reblog: Divorce or Death, a Real Life Decision

THE BLOG 

07/26/2016 09:51 pm ET Updated Dec 06, 2017

Divorce or Death, a Real Life Decision

JAY SMITH

When I was diagnosed with ALS, I was given two years to live. Two and a half years later here I am typing this article using my eyes, while being fed through a tube in my stomach and wearing a breathing mask to give my diaphragm a break. I am one of the lucky ones, and I’m thankful for that.

I still think about how awesome it would be to be sitting at bar in a divey Mexican restaurant with my wife, shoveling way too many salty chips and chasing them down with cheap margaritas. I’d be happier than a truck driver after an eight-hour stretch to be able to scratch my balls again, but I digress. You might be surprised that the hardest thing about ALS isn’t trying to vigorously type in a witty, timely jab with eyes when your buddy does something stupid. It is the cost to stay alive.

When I was diagnosed I came across other patients, like Eric Valor, who through mechanical ventilation has been able to stay alive for over ten years. Then there’s Augie Nieto who has been very actively fighting this beast for twelve years and is the current Chairman of the board at ALS.net. And of course, we all know Stephen Hawking, who I like to tell people I have the same disease as to make me seem smarter. I mean I bet we both share the burning desire to scratch our balls, so there’s that.

It’s estimated that the care for an ALS patient is over $200,000 a year. I ran my own company for ten years and while I always chose a new hire over a pay raise, I was able to bring in enough to convince my wife to “give it another year.” I put away a few thousand dollars each year into my retirement and paid my fair share into social security, both as an employee and employer. So when I could no longer work because of ALS, I applied for social security disability and Medicare. When I found out that I would only collect around $20,000 a year we thought, okay my wife will go back to work and Medicare will cover the medical expenses. I was wrong, almost dead wrong.

I now require a full time caretaker while my wife is at work, which is not covered by insurance. As my breathing continues to decline, I can extend my life for a very long time with a tracheotomy and ventilator, but at what cost? I will require 24-hour care, more sophisticated technology, not to mention a $30,000 used wheelchair-accessible minivan, none of which are covered by Medicare. There are government programs to help cover these costs, but not for middle class families. So my choices are to give up everything and declare bankruptcy, divorce my wife, or just accept death.

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Fellow ALS patient Eric Valor describes the cost of staying alive, “First and foremost, it cost me my marriage. I lost my house and all my savings. I am now destitute, living solely on Social Security, most of which goes to partially pay for my 24/7 care team. The majority of that bill is picked up by Medicaid (not Medicare), for which I must have no assets in order to qualify. ALS took me from a top 10% wage earner to below poverty level.”

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Catherine Scott, the mother of Anthony Carbajal whose 2014 Ice Bucket Challenge videohelped it become a viral sensation, and who also shares the same disease as her son, explains the financial deviation. “It takes everything. After paying all of our monthly obligations it takes every single discretionary dollar we have left to keep me at home by paying for a caretaker out of our own pockets…and even then, we fall short about $1,200 per month.” Catherine, whose ability to breathe on her own is coming to an end will also be faced with my decision.

In Japan the life expectancy for someone with ALS is much longer than in the US. Not because of their fish centered diets or their awesome Kung Fu movies, but because over 90% opt for a tracheotomy to dramatically extend their lives compared to the only 5% here in the US. It simply comes down to costs. The Japanese government provides support for its citizens with this devastating disease and ours doesn’t. As the most advanced country in the world we have to do better. A 38 year old father of two who ran his own business I should be penalized by being middle class, but I am. I shouldn’t have to decide between divorce and death, but I have to.