Spring has sprung!

Greetings, faithful followers. I am still alive and kicking…okay, well, I’m not really kicking, but I am alive.

I just had my six-month check up at Yale with the endocrinologist who is managing my XLH and it was an informative and helpful trip. I am tolerating the XLH meds well, so well, in fact, that my doctor wants to increase them to improve my numbers a little bit. Now I’m up to three calcitriol pills per day and 4 phosphorous pills per day. I will know within a couple of weeks if I can tolerate the increase. Then, in 8 weeks I will have blood work done to make sure my parathyroid hormone is under control. It is very important to monitor both the parathyroid and the kidneys when you are an XLH person on calcitriol and phosphorous.* (See footnote–pun intended!)

While doing my “medical tourism” last week, as my family doctor calls it, I also found out that I have a broken foot. I had wondered why it has been hurting so much for the last year. I mentioned it again to my endocrinologist on Tuesday, telling him it still wasn’t feeling right and so he sent me over to get an x-ray. He called me the next morning to tell me that it was broken and that I needed to go see my orthopedist when I get back to NC. He said it’s an insufficiency fracture.

So there go my soccer career plans.

Anyway, I made an appointment with my orthopedist and saw him a couple of days ago. He said that he wasn’t surprised that my foot had been hurting for about a year, because this particular location in a foot  is a “real booger to heal” when it is fractured. I love having a doctor who is a Southerner like me and who speaks my language!

Just so you know, an insufficiency fracture is a type of stress fracture. What is the difference? The cause. Athletes get stress fractures caused by abnormal stresses on their normal bones. My orthopedist rattled off several names of famous basketball players who had gotten them in this same spot on their feet.

Mine is an insufficiency fracture. Here’s a good definition I found for it: “Insufficiency fractures are a type of stress fracture, which are the result of normal stresses on abnormal bone” (From radiopaedia.org.). Yep–I’ve got the abnormal bone, for sure. So I cannot blame my athletic skills, like knitting and photography, for the broken bone. Darn.

My endocrinologist told me on the phone that the broken foot was another good reason to increase my medication. He said it would help speed up the healing process of the fracture.

I was feeling overwhelmed by all of this but decided to make myself feel better with a new pair of shoes. At this particular shoe store, referred by my orthopedist, I found out all about “neutral shoes” and that this type of shoe would be better for a bowlegged person like me. Most shoes, but not neutral shoes, help people to walk or run more on the outside of their feet, according to the salesman. A neutral shoe is more cushioned, too. Lord knows, I need more cushioning for my feet, and I don’t need to walk more on the outside of my feet than I do already! The fracture was on the left side of my left foot, another reason not to wear something that rolls my feet outward.

I have learned more about feet this year than I ever dreamed I would. I learned last year that my sore feet could only tolerate New Balance WIDE shoes, and only the ones made in Indonesia. The NB wide shoes made in China or Vietnam hurt my feet. Weird, huh?

So, my latest pair of shoes, which are “neutral” shoes, are made by Saucony. In addition to being wide enough, they are also the lightest weight shoes I have ever put on my feet! They’re expensive, though, so I hope they last forever. Well, at least as long as my feet last.

The next thing on the horizon is the XLH adult drug study of KRN-23 that may begin in the fall. I will be eligible for that. You can read more about that study at xlhnetwork.org. In the meantime, I will continue on my current meds and hope that I don’t get any more fractures, which we are prone to get!

All in all, it was a good 6-month checkup. It was sort of like life–a mixture of bad news and good news. Even the bad news (the foot fracture) was good in that I was glad to know I’m not crazy and imagining that my foot “ain’t right” as we say in the South. Life is like that sometimes. A mixture of the bad news and good news, rain and sunshine, thorns and blossoms.

Happy Spring everyone!

Copyright S. G. Hunter and Banjogrrldiaries, 2015. All Rights Reserved.

*If you’re a person with XLH reading this blog, please be sure to subscribe to the listserve of the XLH Network (xlhnetwork.org) so that you can be sure you’re being correctly treated for this disorder. There’s no need to make an already complicated disorder more complicated by being improperly treated! The XLH Network is a great resource for both patients and doctors, so take advantage of it. And, if you’re able, please support the network financially. It’s important to have groups like this who advocate for us on our behalf and there are some wonderful people who volunteer their time to do that for us. Many of those volunteers have XLH themselves or family members with XLH and spend time educating medical and pharmaceutical professionals about our rare genetic bone disorder.