Archive | June, 2014

Old Baldy

18 Jun

Bald Head Island Port

The Port at Bald Head Island

If you have followed my blog, then you know I have a “thing” for lighthouses. When my orthopedic surgeon told me I still have some time left on my old, worn-out, arthritic knees, I decided that I would make my steps count. Climbing lighthouse steps, whenever possible, is one of my ways of making by steps count.

Approaching Old Baldy

Approaching Old Baldy. Yes, the top is off-centered.

Up the shaft

Looking up Old Baldy, from the inside

A couple weeks ago, I almost “conquered” another set of lighthouse steps. Old Baldy, on Bald Head Island, NC, has 108 steps. I climbed 105. The last three I didn’t climb because I was either, #1, chicken, or #2, realized I wouldn’t have anything to hold on to when it came time to turn around and descend the steps therefore making it unwise to “try it and see what happens.” I’m not saying which. I will say, though, that every time I thought about those last three steps and imagined trying to climb and descend them, I got a queasy feeling in my stomach along with a heart flutter. Even now, thinking about it makes me feel woozy. In my imaginings, the ones that made me feel queasy and fluttery, there was nothing to grab to help me climb those last three steps. Professorgrrl was at the top and could have helped me get to the very top, I guess, but I’m not sure she could help me descend, unless she went first and broke my fall. And that would be very unpleasant for both of us. When I got home, and looked at my photographs from the trip, I discovered something very odd. There was a handrail at the top! I have no memory whatsoever of that handrail. My camera sure did remember it.

Three steps short

Looking up into Old Baldy

Have you ever been so fearful, that you’ve been blinded by your fear? My fear of heights that day completely blinded me, I guess. I later stared at that photograph and thought, “Where did that handrail come from?” At the time, all I could imagine was falling when it came time to turn around and descend, due to a misstep. Perhaps I could have climbed the last three steps. I don’t know.

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Looking down from the 105th step

I know that I have long lived with a fear that I would end up in a wheelchair long before everyone else does. Maybe being a child in braces does that to a person. Maybe getting old with a bone disease like XLH does that to a person. Maybe just getting old does that to a person. I am learning to not let fear blind me to the moment that I live in. And in this moment, I can walk. A little crooked sometimes, and sometimes with a hiking stick, and sometimes holding on to Professorgrrl’s arm, but I can walk. I often say that if I wake up and my feet hit the floor before my butt does, then it’s going to be a good day. So, I walk. I climb (lighthouse stairs only). Sometimes, when no one is looking, I dance—a crooked dance, but a dance, nevertheless.

So, what are you going to do with this moment?

Peeking into the top of Old Baldy

Peeking into the top of Old Baldy

Copyright 2014, Banjogrrldiaries and S.G. Hunter

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Calcitonin Drug Study at Yale

1 Jun

Some of you folks with XLH may know about the study that is currently underway at Yale University. Here’s the information on the drug study: https://clinicaltrials.gov/ct2/show/NCT01652573 Last month, I volunteered to participate in the study, because my endocrinologist recommended it, and flew to Yale in New Haven, Connecticut. There’s not a whole lot to tell, except that they collected a lot of urine from me, and did several blood draws. For those of you who hate being stuck by a needle, they actually put in an IV with stop cocks, rather than stick you 7 times. Just one stick, about 8:00 in the morning (what a way to start the day!) and the IV was left in until about 10 AM the following morning. Here’s my selfie of it:

IV with stop cocks

And because I have a friend who is a research scientist, I HIGHLY edited my photo to make it as creepy as possible, and sent this one to him:

IV photo edited

Professorgrrl went with me to Yale, which requires an overnight hospital stay for the study. She knows how flying negatively affects me. Plus, this would be the first time in my life (except for when I was born) that I had ever spent the night in a hospital, which is pretty rare for any middle-aged woman. I was not worried about the hospital stay. In fact, the thing that worried me the most about the trip was that I might throw up on the plane. So, Professorgrrl found a two-hour direct flight, drove me to the airport, and steered me to my seat, while I enjoyed the benefits of Dramamine. My first nurse at Yale said that Professorgrrl was my “Sherpa.” That’s about the truth of it. There are times I definitely need one!

Landing in Connecticut

Landing in Connecticut. I am happy to report that I did not throw up, thanks to Dramamine.

So, how does one blog about a drug study for a rare disease? There’s not a whole lot I want to say, except the nurses, the research assistant, and the doctor (whom I referred to as a “rock star in the XLH world”) were all so incredibly nice and wonderful and knowledgeable. And compassionate. And I’m sure I could think of several other glowing adjectives for them. I felt very cared-for and listened-to and understood. Many people, not just folks with XLH, don’t always get that from their medical caregivers, but I sure did.

I have been taking the calcitonin nasal spray (or placebo) since then, and will continue to take it for the three-month study and then return in August to Yale. There are two local lab visits in the middle of the study (blood and urine) and my first one will be next week.

So, that’s it. Pretty cut and dried, nothing exciting. And when that happens in my blog, well, I post photos.

New Haven is a beautiful city, with lots of very interesting architecture. We were able to do some walking on and near the campus, eat at a good restaurant (did you know New Haven is known for its good pizza???) and go to the Yale University Art Museum. Enjoy the photos!

Yale University tower from the Art Museum window

Yale University tower from the art museum window.

Yale Art Museum window

Yale University art museum window and steps. Those of you who have followed my blog know that I have a “thing” for climbing the steps of lighthouses. I don’t have a thing for climbing steps in a museum, however. I used the elevator.

Yale University building

A building on the campus. They don’t build buildings like this anymore!

The tower at Yale

The tower on the Yale campus is ornate and beautiful!

Come Unto Me

Engraved above the window of this church is a paraphrase of Matthew 11:28. “Come unto me all ye that travail and are heavy laden and I will refresh you.”

Sunset at Yale Hospital

View of the sunset in New Haven from my hospital room. In the distance, you can see the mountain, Sleeping Giant.

Sun sets on the Yale University tower

View of the tower at sunset from my hospital room.

Looking out the Yale University Hospital window

Sunrise view out the window of my hospital room.

Copyright 2014, S.G. Hunter and Banjogrrldiaries