Breaking the Surface of Normal

Summer...a great time to start something new.If there’s one thing I’ve learned this year, it’s to not sweat the things I couldn’t accomplish. Like keeping up with this blog. Some things in life are just more important than the things you want to do (like keeping up a blog); they are called the things you have to do.

This year, top of the list was getting our daughter healthy again after a successful trip to the  Mayo Clinic (see earlier posts). I was under the impression that I wrote a denouement to that story in January, but now I realize it was on our Caring Bridge webpage, which is private. Upshot: We got to Mayo, our daughter triumphed through a gauntlet of tests and appointments, pulled the feeding tube the night before our last appointment, and is eating full meals again. Yay! We got a successful diagnosis of Postural Orthostatic Tachycardia Syndrome, which I we had started treating her for months before her diagnosis. But at Mayo they had a better treatment plan for her, and it works. We also found out she has a fructose intolerance, which at first was tricky to navigate, but we’ve got it down now. You can learn a lot of tricks in six months.

Shower the people you love...with amazing little miracle blossoms.

Shower the people you love…with amazing little miracle blossoms.

Words can’t describe how grateful we are to have a happy, healthy kid again. She’ll deal with this stuff for years to come, but now she knows what she needs to stay active and healthy, so life is good. How can we thank God for this? I guess the rest of her life will glorify God. In the meantime, we are working to raise awareness and help kids with POTS. More on that later.

For now, I continue to pray for kids we’ve met who have POTS and other ailments. I have a bracelet for that. And now I can pray while I run. At Red Rocks Community College, where I work, an amazing instructor named Andrew Johnston designed a course where you train for a marathon. Your final exam is running it! I couldn’t take it in the spring, but he’s offering a half-marathon course this summer, so I’m taking it. It is a kick! I have a bunch of reasons for doing this, but Andrew asked us to send us our “Big WHY” so that when it gets tough, we can dig in. Here’s my response:

Dear Andrew,

You asked for the Big WHY, but to be honest, it’s more of a web of reasons. I will try to figure out a main one, but all these are important (in random order).

    • Because the thought of running 13 miles in a row without stopping scares hell outta me and I always learn the most when I keep going even though I’m scared.
    • Time to focus on my health: physical, mental, spiritual. Prayer time to dedicate laps or miles to others.
    • To learn how to run correctly and lightly, without strain or injury. I’ve never gotten hurt but I’ve also never gotten very far. : )
    • Because I have an amazing family who need and deserve me to be strong and healthy.
    • Taking a class always makes me a better teacher. And it’s really nice to be on the receiving end of inspiration.
    • Middle age is nipping at my butt and I don’t like it.
    • Inspiration for my blog and writing.
    • My mother has high blood pressure, endless joint pain, and now congestive heart failure. I inherited her high blood pressure, but I ain’t doing that other crap.
    • Vanity. I’ve always wanted to have sculpted thigh muscles, but no matter how much I run or swim, I just can’t get there. Guess I need to step it up.
    • To work with you and Richard. I’ve never had a coach.
    • I trust you. It’s obvious you have integrity and enjoy inspiring others! Great energy.

Last, in October 2010, our youngest daughter was hit with a mysterious debilitating illness no doc could ID or fix. We tried every test, prescription, diet change, doctor, holistic approach we could uncover. After a while, modern medicine gets bored with your repeat business (even if it is lucrative) and will tell you it’s all in your head. I knew she was undiagnosed with something fixable, so I spent countless hours researching, haunting chat boards, and more. I applied to the Mayo Clinic. It took us 11 months to get in. In the meantime, I learned about a condition I was sure was her problem, so we began treating her for it. She got a little better, but was still on a feeding tube when we got to Mayo last December. The doctors confirmed it was Postural Orthostatic Tachycardia Syndrome (POTS) and designed a recovery/treatment plan that would really work. She’s now back to normal activity and diet. She lives within certain restrictions, but we are stretching those every day. Life is good again.

One of the best treatments for POTS is regular cardio, so we work out together or she (proudly) works independently. Along that grueling journey, she taught me what bravery is. If she can do what she did, I can run a stupid little half marathon.

There, I guess I figured out the center of my Big Web of Why. In fact, the experience will be useful as we develop an online support group for young POTS patients. Yeah. Thanks!

Sandra

Now that we have surfaced from the undertow of illness, it just feels good to breathe deep and catch our breath. And now venture out into a new journey. On your marks…get set…live!

Look who's coming to dinner.

Look who’s coming to dinner.

 

Posted in fructose intolerance/malabsorption, POTS (Postural Orthostatic Tachycardia Syndrome), Running | Tagged , | 2 Comments

Dash Away, Dash Away, Dash Away All…

…our hopes of finding civilized niceties in Rochester on a Saturday night.

It’s the second-to-last Saturday before Christmas and guess what? In “downtown” Rochester, the stores close at 5 or 6:00 p.m. And if you want pizza, you will have to walk “at least a mile,” but really, no one can tell you in which direction. They just don’t seem to KNOW…and they LIVE here.

Alternatively (and proactively), you can get your act together and time your hunger with a shuttle to the “big mall.” Not the legendary Mall of America, which is just outside Minneapolis. (And I can see now why it is so famous…shopping not being very cosmopolitan in these parts.) Just “the one on the north end of town.” Which, if the south end of town is any indication, must look like it’s in the boonies. And I say that coming from the mountains.

I must say, I feel like a total Yank in these parts. And yet, isn’t this the America many of us dream of? Mom and Pop stores and no “big box” monstrosities marring the landscape and hording all the commerce? I mean, that’s the America this country was built on. It’s what makes shopping charming, tolerable. It’s what keeps America employed and fed. And, evidently, it’s what keeps America’s bedtime right after the Lawrence Welk re-runs. Even with my Little Girl in the Big City sensibilities, I can’t help but wish Mom and Pop could manage to stay up a little later in the evening. Come on, folks, have a second cup of coffee!

Rochester is a strange place indeed. And the Kahler Grand, where we are emprison–uh, staying–is an oddity worthy of a novel. It also home to the Meatloaf Cupcake. Need I say more?

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Airport Gauntlet

Modern day air travel feels exactly like one of those stupid, ridiculous dares you accepted in grade school, just to prove your chutzpah, then immediately realized, too late, you just signed up for a big, big mistake. You are going to get creamed, humiliated, and you know it.

Yesterday started early. Very early. We gave ourselves three hours to get to our flight and used every minute to get to our gate just as they started boarding. After a traffic backup on I-70, we were strategizing the quickest way to unload, etc. I asked my husband to give me his driver’s license and credit card so I could start check-in at the kiosk. He blanched. He’s been on and off so many planes this week, which suit pocket or coat was it nestled in, safe at home? In about two minutes we figured he’d have to zip home, grab his license, and catch the next plane. We unloaded the car and voila, his license was in his jeans. “I’ve been wearing suits all week, how did this get here?!” I knew how: traveling mercies. You prayed for them, they arrived. Miracle: Delivered!

At check-in we had to reshuffle a bit. You cannot believe how heavy these boxes of formula are. I had bought an extra big suitcase to accommodate them and our clothes for a week. When Joe lifted the packed bag as we were leaving the house, he had me grab another empty one. Good plan. The bag was 80 lbs! I shoved the formula and our daughter’s medical records (2″ stack of papers—and that’s just through March) into the empty, and we were off.

Security was a workout. (I had called TSA ahead of time to get the scoop on traveling with medical liquids.) They were very polite and professional. They swiped everything in sight, did a pat-down on me and our patient, and 10 minutes later, we were off–without my cell phone! The agent forgot to put it back in my coat. So for the second time in my life, I ran back up the “Do Not Enter” stairs. In Frankfurt in 1988, I was greeted by an officer with a machine gun. In these days of global terrorism, no one noticed me. Thank God, because who has time to get arrested when you’re trying to catch a plane? A few minutes later, I got my phone back. Whew!

Now we had to collapse the IV pole and switch to backpack mode while boarding. I have the blood blister to prove it was a bit of a scramble. Finished before takeoff. With the gauntlet run, I had a good cry as the plane took off. I could not believe the day we had dreamed of for so long had finally arrived! It was just such an immense relief to have made it this far. If you’ve talked to me in the last few weeks, you know I have been just living for that moment.

Rochester, Minnesota, is a clean and friendly, short and tiny town. Our hotel is literally across the street from the Mayo Clinic’s main building, the Gonda Building. I stared up at the lighted windows and felt that rush of anticipation like kids must feel when they get to the gates of Disney World (but not as sweaty and miserable because we are in refreshing Minnesota, not a drained swamp).

We had dinner in the hotel, which is the oldest hotel in America, I think. Charming outside, but as we say around here, “At least it’s not prison!” Seriously, the bathroom, which looks like luxury accommodations for a bomb shelter, has a slot in the wall for disposing of old, single razor blades, like they used in the ‘50s. I can almost hear the ghosts of 1950s razors calling to me as I struggle to turn on the faucet. Did I mention the rusted metal medicine cabinet and the fluorescent lighting? Oh well. It ain’t prison!

Last night my husband, Joe, and I decided to pick up some stuff for the hotel room while the girls settled in. (I had brought some flat Christmas decorations to spruce up the room, but they were too tired to hang them.) We asked the locals for directions to a drug store for snacks and sundries and a liquor store for a bottle of wine. “Oh, wow, I don’t think there’s a liquor store within walking distance of downtown,” was the surprised reaction of the nice Midwesterners. It was seriously like the thought of a liquor store had never occurred to them. So then we just felt like Wild West drunks. And super athletes, because it turns out we could walk “a whole mile!” to Buckeye Liquors in no time, but they seemed to think we needed a cab. Let’s just say that, coming from 8500 feet, we could have easily done a half marathon without even panting. They have so much oxygen here!

The weather is terrific! Brisk and exciting, like Christmas could actually be just around the corner. (Colorado had the decency to wait until I had the studded snow tires on the car before it even so much as grew chilly.) Not nearly as much holiday decor as I expected, but we are comfortable and ready to turn our worries over to higher powers and smarter people. Today’s agenda includes goofing off and maybe a cab ride to one of two—TWO!—movie theatres in town. Let the games begin….

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