SSCD -The dis-Ability

Stepping out into unknown territory is gutsy. To some it’s courageous. Others think it is just plain crazy. But when you are a pioneer, you learn to not settle. You make decisions. Some are bold and daring. Others are completely risky. Win or learn, you are living. And in the end that is all that matters. Because, the reality is we are all terminal. So why not live life to the fullest—no matter what. Our culture wastes more time in life by thinking of all the reasons something won’t work out, than just putting action into place.

Derek’s progress report has great wins and more patience in the future.

Every day brings him one step closer to regaining his strength. His internal sounds are completely gone. No more pounding heartbeat. No more screeching when his neck moves. No more hearing crazy weird—or even gross—sounds. He is on zero medications, and using only natural protocols!  That is progress!

These are huge wins!

And every single win counts.

Thank you, Jesus.

Unfortunately the external sound sensitivity of every day normal noise is still amplified and has not lifted. Neither has the pressure in his head. When he is surrounded by noise or is physically active, the pressure builds and dizziness returns. Elevation still bothers him. His ears are popping more frequently. They didn’t do this before, but because we are driving through the mountains, he isn’t able to equalize pressure. On the flip side, Derek doesn’t feel like he is walking at a slant anymore. Before it was all the time, know it’s only when he becomes active. A roller coaster ride for sure.

Slow and steady wins the race. We must not give up or give in. Celebrate the wins and always remember tomorrow is a new day. Derek is still early into his recovery. The pressure could still be a result of all his past surgeries and inflammation. We continue living a healthy lifestyle, eating clean, and supplementing to control what we can. What you eat matters. The wrong foods can cause more inflammation. Keeping his gut and brain as healthy as possible promotes healing!

Every bit helps.

The reality is that Derek had a lot of damage done from surgeries that he shouldn’t have had. We continue to be patient and keep praying for the sound sensitivity and pressure to release. When our minds wander and  anger surfaces at the years of misdiagnosis, and damage that resulted, you have to learn to let go. I sing the Frozen song A LOT!

LET IT GO……

For those of you who are discouraged in whatever challenges you face, we want to encourage each and everyone of you. Sometimes you just have to fight for the miracle. I tell Derek every single day that his job right now is to be your hero. He is always embarrassed when I say this because real heroes don’t think they are heroes. They are too humble. I just happened to be married to one, so I can say it:

Derek is a hero.

Derek looks great. You can’t see his disability unless you are with him or when he is so rough his eyes give it away. His disability is hidden. That is the horror of SSCD. The patient looks great on the outside, but inside their head is a hot mess. Every picture I post of Derek smiling is him smiling through tortured conditions. That’s why he is a hero to me. He never stops smiling. He never stops finding joy in the eye of the storm. Talk to any patient diagnosed with this wretched disease and they will tell you. They are accused of faking it. Crazy. Psychotic. Depressed. Vestibular migraines. The list goes on. The reality is they have holes in their skull that creates a nightmare of problems.

 

 Derek continues to live the motto we taught our children:

Work hard and play hard—even with a dis-Ability.

He chooses to not live life in fear, but in faith, which gives him the ability to keep moving forward. He takes nothing for granted. This is why we take every advantage of exploring God’s amazing creation. Witnessing the masterpieces of nature is a beautiful reminder that our God is a great God. He can and will move mountains when He so choses.

Here are the joys we found in pioneering this past week.

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We were graced this Thanksgiving with our daughter Whitney who flew in to Phoenix to meet up with us. She has been deeply missed. I found them all cuddling on the couch. Even Snickerdoodle missed her. Our long walks, watching the sunsets and sunrises, and exploring with her was most definitely our highlight.

 

arizona13Cousin Kurt and his beautiful wife Jen graciously welcomed us into their home, and put on an amazing Thanksgiving dinner. Together they have five awesome kids, and we were also blessed with a visit from Uncle Mike and Aunt Heidi from Georgia as well. We were like a long-distance group of misfits. Laughter filled the air. Though we all terribly missed everyone back home, we pioneered through the rough patches of homesickness and found joy in new traditions. Derek and Kurt could pass for brothers and they most certainly share the same hearts. Jen and I “married UP.” As for Jen, she is a grace-filled woman who never stops amazing me. Incredible mom, wife, and athlete who just signed up for the 2018 IRONMAN. WOW!

Talk about serious girl power. Jen definitely ranks in my Top Ten pioneer women category. Thank you for your warm welcome and hospitality.

Of course we wouldn’t be pioneers if we didn’t go out and explore.

Old junk yards in Jerome, Arizona. This is a must see place. A mining town built in the side of a mountain back in the mid-1800’s became abandoned over the years and in the past couple decades has been brought back to life. Of course, with this clan of Heins and  Pitterles, the junk yard was a huge hit. Anyone that knows us, knows how we love anything abandoned. Lots of cousin memories were made here.

 

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Everyone voted this should be our new home. Lord, help me.

arizona9Then there is sweet Aunt Heidi who has Alzheimer’s. She may not remember everything, but she still has the spirit of the pioneer. Adventure will always be ingrained in her. Originally from Germany, she journeyed years ago to a foreign country to live the American dream. As we walked through the junk yard, she grabbed my hand and shared the stories she could remember of pioneering into a new country long ago. This amazing woman—and all she has endured—also made my Top Ten girl pioneer list.

 

 

If you ever go to Arizona you HAVE to see the Grand Canyon. This was Whitney’s first time. Thank you, Kurt, for being an amazing tour guide.

 

 

The history of exploring national parks and witnessing the wonders of Creation is the best medicine in the world.

arizona24Derek tried hiking for the first time after his second brain surgery and did amazing. That is when I have a front row view of just how challenging it is for him—and still he plows through it. What a sight for our children to witness. Their relentless Dad refuses to stop living. Remember, activity makes him dizzy. How many people would even attempt a small hike at the Grand Canyon…DIZZY? I will not lie, there were moments my heart stopped. But Derek teaches and pushes me everyday to not live a fear-driven life by being the example. When he is dizzy enough, he sits for awhile. Then he simply gets back up.

Oh, how I love him!

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Montezuma Castle was breathtaking. To see the history of our nation during this adventure has been humbling. It is 100% better than reading it in a book. To think an Indian tribe built this castle in the side of a canyon cliff with simple tools, no power, no machines with lifts is unbelievable. Imagine carrying everything by hand up hand-built ladders.

Something tells me this wasn’t OSHA regulated.

 

 

Slide Rock State Park in Sedona has one of the world’s best secret swimming holes. Truly breathtaking!

What’s next?

From sea to shining sea, we are driving across the country. Why not?

So…Florida, get ready. The Long Long trailer has hit the road again. I can work from the road, our home goes with us, and, heck, if I have to go to the bathroom, I just pull over. It’s awesome. Besides it’s winter in the Midwest and our pipes would freeze. So it’s best to stay south. Why not let Derek recover in the sunshine!

 Derek will see our “other favorite doctors”—Dr. Li and Dr. Massa—and continue to address the issues he is still having. We follow up with his surgeons at UCLA in January.

Plus, we have some amazing surprises coming and can’t wait to share them with you all!

Life isn’t about the disability. It’s about the ability to make the most of every day.

Go. Be a pioneer. The world is waiting just for YOU.

Sarah Hein the Pioneer

 

1 thought on “SSCD -The dis-Ability”

  1. Definitely my heroes. I love that you’re walking in my AZ footsteps. I am blessed to be here. On to Prescott next week and then back to WI for 2 weeks. Love, Lynn

    Sent from my iPhone

    >

    Like

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