Tag Archives: xlhnetwork.org

Come Home Free

29 Oct

Hello fellow XLH-ers!

As a follow up to my September post, the book that I co-wrote, “Come Home Free,” by Hunter Crainshaw, is ON SALE today and tomorrow for .99, Kindle Edition only. Clara, who is one of the main characters in the book, has XLH.

While writing the book, we debated a little bit about whether to include a character with XLH, since it is something that I have. But a writing seminar we attended convinced us it would be okay to do that because, according to the writer who spoke at the seminar, most readers enjoy learning new things. So, it’s okay to “write what you know” if it’s a subject that others might not know about. We XLH-ers know that XLH is a subject that hardly anyone knows anything about, including most doctors. This confirmed our decision to have Clara be a person with XLH.

If you’re a fan of Southern fiction, you might enjoy this book, available through Amazon. You can do a search of “Come Home Free” by Hunter Crainshaw.

Or, you can follow this link: Come Home Free.

Thanks for reading!

Fused roots

7 Sep

Fused root #12

Fused Roots!

Now showing at your local movie theater, it is a film about a tooth whose two roots are fused. Can anything save it?!

Rated PG for Premolar Grimness.

Sigh. Yes, I lost another tooth. Tooth #12 on the dental chart. We XLH-ers specialize in dental problems. I think this is the 16th tooth that I’ve had to have pulled, bridged, crowned or “root canal-ed.” Last year, I lost its match on the other side. That one did not have a periodontal ligament, but from what I remember, it did have the usual two roots.

But this one, #12 premolar, had two roots which were fused into one fat one, which contributed to its instability. Of course, we didn’t know it had fused roots until Dr. Tooth extracted it. Prior to the extraction, we discussed whether it was worth saving, not knowing that it had fused roots, since that didn’t show up in the x-Ray. I finally decided that he should pull it, given the history I had with the same one on the other side. So, he pulled it. It hurt. A lot. But it hurt before he pulled it, too.

The over-riding thought that I had throughout this tooth-pulling ordeal was how lucky I was. Lucky, you might ask?

On Friday morning when I realized that the growing pain I’d had all week in my mouth was coming from one particular tooth, I thought, “How unlucky am I? It’s Friday and I have a dental emergency and they’re closed on Fridays. Not only that, it’s the Friday before Labor Day weekend. I’m going to have a long, rough weekend.”

I called the office, though, because I was concerned. When I pressed the appropriate button for “true dental emergency,” MY dentist, out of the four dentists who work at this practice, answered the phone. MY dentist, Dr. Tooth, was on call for the long weekend! How lucky was THAT! I couldn’t believe how my bad luck had changed with one phone call. All I really wanted was his advice, but after we chatted, we agreed to meet at the office for him to check it out.

When I think of the many medical professionals I’ve entrusted myself to over the years, Dr. Tooth is the one I’ve been the most worried about “losing.” Of course, he deserves to retire one day, and I suppose I could run out of teeth to pull or crown before he retires, at the rate I’m going, but still–the thought of trusting another dentist is nerve-wracking. He is a compassionate man and an excellent dentist. He has a very conservative approach to dentistry and doesn’t try to sell me some product that will whiten, brighten and glamorize my smile. He’s old school. I like old school.

So my movie, “Fused Roots,” starring me, has a happy ending for now. The pain is gone. The source of the pain is gone. And my dentist was there for me.

Stay tuned for the sequel: “Fused Roots II: The Invoice Arrival.” I’m sure it will be a shocker.

Copyright 2015, Banjogrrldiaries and S.G. Hunter

Come Home Free by Hunter Crainshaw

2 Aug

Today I have a very short post. For several years, I have been co-writing a book of fiction. You might describe it as literary fiction or Southern fiction.

It is finally available on Amazon in an electronic format for $4.99. The paper version will be available in a couple weeks, we hope. Here’s the link to the book: Come Home Free.

The reason I am posting it on my XLH blog is because Clara, one of the narrators, has a mild case of XLH and some of you might find that interesting. I hope it will help to raise some awareness of the disorder, anyway. But the story does not make the XLH a focal point, in my opinion.

For any readers who grew up in the Christian faith, you might recognize many of the biblical references scattered throughout the book. For my Jewish readers, you will notice that most of the biblical references are from the the Old Testament, or Hebrew Bible. Most of the characters who are in the book are Southern and Lutheran.

So, if you like a good trashy romance novel, you will NOT like this book! In our book there is mystery, humor, faith and hope in good measure, but no trash!

The book is “Come Home Free” by Hunter Crainshaw and we hope you’ll give it a read.

Happy belated 25th birthday, ADA!

1 Aug

Looking toward Main - Copy

Last Sunday, July 26, 2015, was the 25th birthday of the Americans with Disabilities Act. President George H. W. Bush signed this law into effect on July 26th, 1990 as a civil rights bill for Americans with disabilities. The law is many pages long, but if you’d like to read about it, go to ada.gov.

Of course, passing laws does not necessarily make people better citizens. I still see people break the speed limit and run through stop signs on a daily basis. The ADA, though, has made people more aware of folks who have both physical and mental disabilities. Thank goodness for that! Physically disabled people now have better and easier access to public places. Congress listed in their “findings” several things which inspired them to create this law. For example, they found that:  discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services.

The bill was/is an attempt to eliminate these kinds of discrimination, among other things. You can legislate some things, but you cannot legislate kindness. I know someone, for example, who had to threaten to stop taking her mother to a particular beauty salon because of the lack of kindness showed to her mother when she would roll in on her walker to the salon. The beauty salon conformed to the ADA standards by having a nice ramp up to the back door, with adequate parking for those with a handicap sign. Unfortunately, the hair stylists there like to gather out by the back door to smoke and eat their lunches, and were not very accommodating as she tried to get through the heavy door, roll through the tiny break room and into the salon area. One time the way was blocked by several boxes of hair products in the hallway, making it too narrow to pass through with a walker. My friend felt that the best approach to handle this was not to “call the authorities” and report this, using the “ADA” word. Instead, she told her mother’s hair stylist who was furious and as far as I know, this has not been a problem since then.  But you still can’t legislate kindness and manners. Somebody’s mama and/or daddy has to teach their children some manners.

I want to focus on the “recreation” part of this finding (quoted above) by Congress. In December 2012, I wrote to my neighborhood association’s president and asked him if they (the board) could approach our city about doing some sidewalk repairs. Oh yes, he replied, the board had discussed this and had plans to work on this and would remind the person who was in charge of this. I never heard another word, but I did continue to wonder if anything would come of it.

Sidewalk in front of yellow house - Copy

There are several places in the neighborhood where tree roots in the medians have lifted up the sidewalk sections so high that a wheelchair or baby stroller would not go over it safely. If you were not paying attention, or had limited eyesight or it was at night, it would be very easy to trip over these sections. They’re unsafe.

When I was reminded this week that the ADA was celebrating its 25th birthday, I decided I would skip the middleman (the neighborhood association) and contact the city myself. Professorgrrl found that contact person for me online. (Thanks, Professorgrrl!)

I wrote the man in charge of city sidewalks, not expecting an answer any time soon. Oh me of little faith! He wrote back less than 12 hours later and asked me to send him the addresses of those places where the sidewalks are dangerous. A couple days later, I sent him a list of 8 places. And yesterday, less than two weeks later, he had been out and marked the places with cones and had the crews pull up the sidewalk sections for their “tree man” to take a look and see if anything can be done with those roots that are pushing up the sidewalks. How’s that for progress? Skip the middleman, I say.

20150731_091914 - Copy

20150731_092047 - Copy

Now, I will admit, a case could be made that my asking for these sidewalks to be repaired was a bit self-serving. There is certainly some truth in that. In 2012, though, when I initially wrote the neighborhood board president, it was because an able-bodied neighbor tripped over an uneven sidewalk section and became temporarily NOT able-bodied. And, when I wrote the board in 2012, I had no idea that almost three years later, I would be walking “nordic style” due to a fractured foot. Because of my own experiences, I felt an even more urgent need to seek some help from the city. As they say, “there but by the grace of God, go I.” It can happen to anybody. One day you’re walking, the next day you’re not. Or in my case, one day you’re waddling, the next day, you’re waddling more. In an instant, someone’s ability can change. I am lucky, in that I’ve always known deep inside of my potential for disability, that would come over a period of time. For my neighbor who tripped on a sidewalk, it was an instant. For my mother, who fell three months ago and popped her artificial hip out of joint, it was an instant. A painful instant. She is still recovering. I don’t wish this on anyone of my neighbors, even the ones who irritate me! (And, incidentally, my mother tripped over an uneven sidewalk many years ago and broke her knee. She was much younger and more able-bodied then, but accidents do happen, even to the young and able-bodied.)

All this has reminded me. Sometimes, you only have to ask. And you might get lucky and receive!

Copyright 2015, Banjogrrldiaries

Spring has sprung!

12 Apr

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!

Thorn bush blossoms

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.

When one year closes, another one opens.

31 Dec

Yes, I know the correct saying is “When one door closes, another one opens.” Or something like that.

Here we go, leaving 2014 and rushing headlong into 2015. First of all, let me say thank you to those of you who subscribed, made comments, hit the “Like” button, with an extra thank you if you’re one of my fellow members of the XLH tribe. I wish you all well this coming year.

The year 2014 has been a very interesting year of blogging, with many ups and downs. Regarding XLH, I was able to participate in a drug study at Yale, and as a result, am now under the care of a physician who is treating me with the standard course of treatment for adults with XLH. This is all going well so far, and I’ve been feeling better.

The saddest part of the year was the loss of our beloved Jack Russell Terrier, Deacon, whom I blogged about this year. He was truly an inspiration for aging, but he passed away in September at the ripe old age of 14. This was all very difficult, even for Tucker the Beagle, who was more attached to him than we thought. As a result of Tucker’s loneliness…okay, so he wasn’t the only heartbroken one…we now have Penny, a terrier mix. I think a photo of Penny is in order here.

Penny running towards me

She has been very good for me. She’s very sweet, brings out my nurturing side and keeps me from sitting on the couch too much, since she’s usually into something that she shouldn’t be doing. She adores Tucker and he adores her. She’s very small, about 9 pounds, and has a lot of love to give. In October, my doctor put me on blood pressure medication and between the pills, knitting and Penny, my blood pressure is under control. I’d like to think that the knitting and Penny deserve most of the credit for my improved health. But I’ll keep taking the pill, just to be sure. Ironically, the doctor who first noticed I had blood pressure problems was the one who ran the XLH drug study at Yale. So, the drug study was unexpectedly helpful in other ways.

So, here we go. rushing headlong into 2015, like Penny in the photo with the toy in her mouth. Not sure what will happen…will Mommy throw the toy again or not? Will she throw it to the same place or not? It doesn’t seem to matter to her…she keeps coming back for more, ready for whatever is next.

So, life moves along and new year with who knows what awaits us…I hope you all will keep coming back for more!

Honesty is the best policy.

14 Sep

[NOTE: In my blog post today, I write about losing weight and exercising. I do realize that my personal experience cannot be universally applied to everyone else’s medical situation and physical condition and abilities. I am not being judgmental towards other people who are overweight or can’t exercise due to physical disability. Really, this blog post is all about me–and now that I’ve written and published it, I guess I will have to hold myself accountable to the promise I’ve made myself to lose a few pounds by being more active, as I am able, and eating less. I’m letting you “in” on this pledge I’ve made to myself, hoping that someone “out there” might also be inspired to make a commitment to get healthier, as they are able.]

Today, I am stuck at home. Why? Because I am doing a 24-hour urine collection for my doctor and I don’t want to go anywhere today and take my “hat” and urine collection jug with me in case I need to pee. I know, this is probably too much information for some of my readers. I’ve just recently started on the “standard” treatment for adults with XLH—Calcitriol and Phospha 250 Neutral—and I guess part of that standard course of treatment is doing a 24-hour urine collection to see how my kidneys are affected. We do have a phosphorous wasting disorder, and the kidneys are a big part of making sure most our phosphorous gets wasted as per the instructions on the PHEX gene of the faulty X chromosome. As I have mentioned in a previous post, my body is following those genetic instructions very well; it’s just too bad the instructions are wrong.

So, I’m at home, knitting a baby hat for someone I know who’s going to have a baby in a few weeks, listening to the gentle snores of the dogs and pondering the big things in life like, is it time for lunch yet?

What has led to the pondering of lunch is, ironically, that I started on a diet last week, with the help and wise advice of Professorgrrl, who has a calorie-counting app on her smartphone. (Note to self: ask her how many calories are burned when one blogs?)

Professorgrrl and I had an interesting discussion while on a walk this morning. We were discussing an elderly woman that we know who, though she’s had more than one MRI on her back PLUS back surgery, is determined that her doctor needs to order another MRI for her back, “to see what’s going on.” The woman is 80 years old, doesn’t exercise, sits in her recliner all day and watches TV, but does get up to walk down to the elevator to go to the dining room (she lives in an independent living facility) three times a day to eat. For this woman, there seems to be, in her mind anyway, some therapeutic value to getting an MRI. I don’t dispute that sometimes knowing exactly what your problem is does help you to deal with it better. I asked Professorgrrl if she thought that the doctor would just order the test OR would she say, “Your problem is that you sit in your recliner all day and do nothing but think about yourself. You need to get off your butt and walk around several times a day; you need to socialize with other people; you need to get involved in some activities around there and stop thinking about yourself so much and get a little bit of exercise while you’re at it.” We concluded that there aren’t many doctors who are that brutally honest. Why did we conclude this?

Well, I have the same family doctor as this elderly woman. I just had my yearly physical a couple weeks ago, and my doctor said nothing about my weight gain. In fact, I have seen three different doctors in the last year, plus their nurses, and not one single medical person has said to me, “Banjogrrl, I have noticed that your weight seems to be trending upwards. If you keep gaining, by the time you’re 65, you will be in sorry shape. Have you changed your eating habits? Have you stopped walking every day? Why are you slowly gaining weight? Do you know what this will eventually do to your already arthritic knees and hips? Not to mention your back pain, too?” Nope, not one single comment from a medical professional. In fact, my family doctor looked at my lab work results and said that my cholesterol looked really good and I seemed to be fine, see ya next year.

Now, if you were to look at me, you wouldn’t notice that I’ve gained weight steadily over the years. I have never had a shapely shape that could be lost with weight gain. I’m pretty much shaped like a tree stump—short with no hips, or anything to suggest an “hourglass” shape that American women strive for. I know some of you who know me personally will probably read this and scold me for saying I’m shaped like a tree stump. A stump is NOT a bad thing. Read the children’s book, “The Giving Tree.”

However, the doctors and nurses all have those numbers in front of them and could easily look at the amount I weigh now and say, “You’re gaining weight. Why?”

I am not saying that the responsibility of losing weight is on them, either. I know it’s all my responsibility. I am a bit surprised that the insurance company hasn’t stepped in and said to their customers, “We’re sorry. Because you are over your ideal weight, we are not going to allow you to have knee replacement surgery, blood pressure medication, cholesterol medication, etc. You need to get your act together first, then we’ll review your case.” I hope that day doesn’t come, since the insurance companies control the world enough already.

I do think, though, that some strong encouragement from a medical professional might go a long way. My doctor could have said, “Banjogrrl, have you considered the possible problems in your future if you allow your weight to continue to trend upwards? Can you make a plan to stop that increase?” Maybe she’s being overly compassionate, because she realizes I have the mobility and pain issues that come with XLH. Perhaps she can’t bring herself to use “tough love” on her patients. Maybe she won’t be able to bring herself to say to my elderly friend, “Have you considered the consequences of sitting on your butt all day in your room and doing nothing but watch TV? Change your sedentary, hermit-like lifestyle and after a year of implementing that change, talk to me.”

She probably won’t say something like what my dad’s doctor said to him once, regarding his diabetes. “If you don’t lose weight and change your eating habits, you’re going to die. Are you ready for that?” My dad wasn’t ready, thank goodness. His doctor wasn’t politically correct in his approach, either. But sometimes, do we need a kick in the pants? I think I need one regularly, and if you have XLH, then you know how hard it is to literally or figuratively kick your own self in the pants.

So, I’ve decided to give myself some “tough love” and I plan to try to lose 11.5% of what I weighed last week before I started this adventure. Right now I am being encouraged by Professorgrrl. Oh, and her phone app, too. Here’s a list of fun calorie burning activities, which is important to know, because you can eat those calories in snacks or dessert later:

30 minutes of playing Croquet burns 81 calories.

30 minutes of gardening burns 105 calories.

30 minutes of fishing burns 88 calories. I need to renew my state fishing license.

15 minutes of juggling burns 53 calories. I know how to juggle, but 15 minutes at a time is plenty for me.

30 minutes of Wii bowling burns 60 calories and 30 minutes of REAL bowling burns 70 calories. This, in my opinion, makes the case for staying at home to bowl, because you don’t have to rent smelly ill-fitting shoes and eat high-calorie, over-priced snacks. You should invite someone over, though, because socializing is part of the fun of bowling.

30 minutes of walking with a dog burns 70 calories. I think that 30 minutes of walking a maniacal Jack Russell Terrier burns 100 calories.

30 minutes of playing the guitar while sitting down burns 35 calories.

30 minutes of playing the piano burns 46 calories.

30 minutes of playing a woodwind instrument burns 28 calories. Another good reason to take up the guitar or piano.

Yesterday, I played my hammered dulcimer at a wedding for approximately 1.5 hours. Playing the hammered dulcimer isn’t on the list of instruments in the calorie counting app; however, since it is a percussion instrument, I looked for the amount of calories burned while playing the drums. Thirty minutes of playing the drums burns 98 calories! I practiced many hours this week in preparation for the wedding so I’m pretty sure that earned me some chocolate.

Dulcimer set up for wedding

A pretty location for a wedding and a hammered dulcimer.

Overlooking dulcimer at wedding

We made it through the bride’s processional music, Pachelbel’s Canon in D. At this point in the service, we’re waiting to play the recessional music, “Haste to the Wedding.” The recessional music burns more calories than the processional music, since it’s much faster and in 6/8 time, which is considered “jig” time. Dancing a jig burns many more calories than playing a jig, but hey, you do what you can do.

Copyright 2014, S.G. Hunter and Banjogrrldiaries. All rights reserved.