29 Mar

It’s not unusual to see healthcare articles about the treatment of chronic pain in adults. I have thought about the subject of pain quite a bit recently, due to reading some online discussions of that topic. Adults and children differ in their ability to handle pain, in my opinion.

I imagine a child who climbs a tree, but falls out of it and breaks her arm. Obviously, she’s going to hurt from that! She would cry, run to the house and look for her mommy (or other parental figure) for comfort, and have to go to the doctor. “Bless her heart,” is what we Southerners would say. The child would get treated at the doctor’s office, get some pain medication, and get a big ol’ cast on her arm. She would also get a lot of attention from the doctor, nurse, parents, grandparents and friends. The child would obviously feel actual physical pain from this fall and subsequent break of her arm. Her crying is most likely due to the actual physical pain of the event so treating the pain is straightforward. She probably isn’t going to think, “Oh, no, I’ll never get a date to the prom in ten years because I’ll have a crooked arm from now on.” She probably won’t worry about the cost of the pain meds, cast and sling and doctor’s visits. I doubt she’ll think, “I’ll never be able to get a summer job working at the Myrtle Beach Putt Putt because this arm will never be the same. My job options are now limited.” She’s a kid—she just feels the physical pain of falling out of that tree and breaking her arm. The only emotion she might attach to this event is a short term fear that her mom is going to be really ticked off that she climbed that tree against her mother’s wishes. That fear will probably dissipate once she sees that her mother is going to comfort her and take care of her rather than bawl her out for disobedience. (That will come later.)

This isn’t usually true for adults. With physical pain, especially chronic pain, there comes a huge range of emotions. I believe that this is the main reason why doctors simply cannot treat adult pain effectively. All the pain meds in the world won’t stop an adult from worrying about what this pain they’re dealing with means for their future health and financial status. Adults don’t just feel the physical pain—they worry about it affecting their quality of life. Young adults, with diseases and disorders that cause debilitating pain, worry about things that most people take for granted. “How will I work and feed my children? How will I hold my child or pick up my child?” Pain is not just a simple problem that can be “fixed” with some pills, a doctor’s visit and a hug and a kiss from mommy. Middle-aged adults with chronic and/or debilitating pain worry about many things—losing their independence, becoming disabled, not being able to find meaningful work, not being able to walk their dogs or pick up their grandchildren. Single adults with chronic and/or debilitating pain might fear that they’ll never find a date or a spouse because of their physical limitations. Let’s face it—people who can ski, bungee jump, and run marathons are way more exciting and make better life partners, right? Right.

A while back, a friend wrote to me to tell me she was going through a very rough time. She told me that she had decided to tell two people what she was going through. I was one of the two she chose to tell. At first, I questioned the wisdom of her only telling two people. I worried that maybe she should tell more than two people, thinking that telling more than two would give her more support. More is better, right?

However, within 12 hours of my friend telling me what she was going through, I happened to mention to a person a little bit about my XLH. I normally don’t discuss it but I did, casually and mostly in medical and scientific terms. This opened the door for this person to respond with a very stupid comment, stated with great confidence, which made the comment even stupider. (Is that a word? No? It is now.) It left me feeling very vulnerable and irritated.

Suddenly, I realized my friend was right. Tell two people. That’s it. Are you feeling like crap? Are you in pain (physical and/or emotional)? Tell two people. That’s it. That’s plenty. Don’t add to your pain by telling so many people that your chances of getting a stupid or insensitive response are increased tenfold.

Be selective. Tell your spouse or best friend or a clergyperson or a professional therapist. Tell your online support group if you have one (yeah, I know that’s more than two people, but it’s only one “telling” of it.) You can also tell God. If you don’t believe in God, then find yourself a “Wilson” to tell. (Watch the movie “Castaway” if you don’t know who Wilson is.) Even if you tell just two humans, there’s still a chance that someone might give you a stupid response. (My friend told me, and she knows I am capable of stupid responses, but I’m glad she trusted me anyway.) The last thing you need to do is feel even more vulnerable in addition to the physical and/or emotional pain that you’re already experiencing.

So, my “advice” (which should always be taken with a grain of salt, remembering that I’m not a therapist or doctor, merely a blogger with XLH) is to treat your pain (physical and emotional) in a multifaceted way. Medication might not completely take away physical pain in adults, in my opinion. We have to deal with the emotions that come with it—the worries, fears, sadness, grief, loss, etc. Tell someone or two (okay, three for you extroverts) about it either in person or by writing, if you’re a part of an online support group. There are people who will be compassionate listeners.

And, just because I like to throw in a photograph or two in my posts, I’ll tell you another thing my friend told me. She said she doesn’t like to look at herself in the mirror when she’s had a crying spell. I sure know that feeling! My face looks like I fell into a bee’s nest when I cry—red and splotchy and puffy. I really try to avoid low hanging mirrors when I cry, which is about twice a year, so I won’t see my splotchy face. And next time I cry, I have found just the place to do it—a recently renovated restroom at a college where I work. Eat your heart out, tall people.

Bathroom mirror

Just for your information: this mirror goes all the way up to the ceiling in this bathroom, but the bottom edge is, obviously, too high for me to see my face. It’s a good thing I’m not vain. Who designs these bathrooms? Why does the mirror extend all the way up to the ceiling but not down to the sink? For the life of me, I don’t recall ever seeing a 7’ or 8’ tall person at this college, who might need a mirror like this.

Copyright 2014-2019, S.G. Hunter and Banjogrrldiaries


17 Mar

This year in the South, during the months of January, February and March, we have been experiencing a thing that non-southerners call “Winter.” This happens to us about every 5-10 years, and of course, we feel sorry for ourselves and victimized by Mother Nature. She’s basically picking on us this year. Here in NC, we have seen a couple of snowstorms, ice storms, single digit temperatures, and I have personally seen more snow-covered lawn furniture photos posted on Facebook than I have ever seen before. I thought people did that because snow-covered lawn furniture is ironic; however, one friend told me that people use their lawn furniture to show off how much snow they got. Who knew? I still think they do it for the irony, and just don’t realize it.

So, my daily walks with the dogs have been greatly affected by this bad weather. In the mornings, I can hardly walk in perfect weather, never mind icy, snowy weather. Professorgrrl insists that I stay inside and not take the chance of going outside and falling. Being a person who likes to “chillax” as kids say, I don’t argue. However, this doesn’t help me keep my, ahem, girlish figure. (Neither does aging.)

Therefore, I devised my own indoor exercise plan. Since the house is all one level (yep, that’s on purpose) I decided to count how many steps (my steps, not a regular person’s steps) there are from the kitchen on one side of the house to the back bedroom on the other side of the house. There are about 50, making a round trip of 100 steps. I went online and found that around 2500-2600 steps equals one mile. (I guess that’s regular people’s steps.) I decided I would walk in the house on snowy and icy days to “get my exercise on.” The first day, I stopped at 600. That was before I discovered how many steps equal one mile. Then I knew I needed to push a little harder than 600 steps. So far, the most I’ve gone is 2000 before the left knee starts to complain loudly. Walking is one of the best things for helping my back, though.

And here’s the other benefit. The dogs are completely fascinated when I do this. Well, Tucker actually looks a little worried about the whole thing. He usually stays out of the way and watches from a perch on the recliner.

Tucker staring

But Deacon, the old guy, thinks that this is the most exciting plan that I’ve ever come up with. He walks with me, and must think we’re going somewhere. Today, he even walked with me so long that he started panting and had to stop for water.

20140317_163620_1      Deacon leading me

His happy attitude about my walking (he’s usually an Eeyore, so this is a nice change) encourages me to go for 2000 steps. I don’t know what he thinks will happen when I arrive, but it’s obviously something great.

Sometimes, it sure is nice to have a cheerleader.

Deacon barking

Copyright 2014-2019, Banjogrrldiaries and S.G. Hunter

World Rare Disease Day

28 Feb

Today is “World Rare Disease Day.” It is a day of recognition of all those who have rare diseases and/or advocate for those who have rare diseases and disorders. There are events held all over the world on the last day of February (which is the 29th in leap years) to educate and inform people and government agencies about the challenges faced by folks who have rare diseases and disorders. Today (and all this week) there have been fellow XLH patients and medical specialists who have advocated for us in Washington, D.C. Their message to representatives and senators has been this: “Without consistent funding of the National Institute of Health, research into rare diseases will not be done. We are losing our next generation of young scientists when budget cuts are made across the board without regard to the needs of long term research.” Their message is simple, and a message that helps many Americans, whether they have XLH, or some other rare disease or disorder.

The Global Genes project ( declared today to be a day that you wear your favorite pair of jeans in honor of World Rare Disease Day. I wore my favorite pair. Actually, it’s the only pair I can still get my derriere into.

Selfie with Jeans

Funny thing about cell phones. They make my legs look really long from this angle.

As far as I know, no one noticed that I wore jeans. It is not unusual for me to wear jeans, so they didn’t know that I was very intentional about wearing them today. Wearing them did nothing to change the world, or bring about awareness on a large scale.

But wearing them did this for me: I thought about a friend of mine that works with children with physical challenges and disorders, several of whom likely have some type of rare disease or disorder. I was silently thankful for her and people like her who do this work, day in and day out. They are probably under-appreciated. It is a very physically and emotionally demanding job.

I thought of my parents, who had to deal with the shock of learning that their first born one-year-old daughter had some strange thing called “Vitamin D Resistant Rickets” and would require many visits to the doctor, blood tests, medication, braces and rude comments from people who told them I wasn’t getting enough milk. It would also mean that they would need help from the March of Dimes.

I thought of another friend of mine who is a research scientist and works tirelessly for cures and treatments for all sorts of things. People like him have made some remarkable progress in understanding and treating XLH and other even rarer disorders. Because of their passion and curiosity, there are people now whose quality of life is much better than it would have been just 50 years ago.

And finally, I thought about those in my own support group,, who went to Washington, D.C. to advocate for ALL people who are affected by a rare disease or disorder. I am grateful for them.

I like the slogan for NORD (National Organization of Rare Disorders, According to NORD, there are 7000 rare diseases that affect 30 million Americans. And their slogan is this:

“Alone we are rare. Together we are strong.”

Copyright S.G. Hunter and Banjogrrldiaries, 2014-2019

Mona Lisa- Not

7 Feb

If you read my last post, then you know that I had plans to get a dental flipper to fill in the hole where one of my teeth used to be. I got it last week, and have been wearing it faithfully since then. As I suspected, I hate it. So, here’s my ode to the dental flipper.

How my dentist sees my dental flipper: a work of art. (Yes, I took a few liberties in my photo-editing program to give her some big white teeth.)

Mona Lisa with buck teeth

How my dentist’s accountant sees my dental flipper.


What others think is in my mouth.


What children think is in my mouth.

Hard Candy

What I feel like is in my mouth. I call this a dental flapper.

Dental Flapper

What is actually in my mouth.

Dental Flipper

The photo doesn’t do it justice. Professorgrrl says this photo looks like a piece of raw chicken sitting on a toilet. The “toilet” is actually a carrying case, Professorgrrl. I guess if you think it looks like raw chicken, then Tucker the Beagle would likely think the same thing. Note to self: keep it out of his reach.

©S.G. Hunter and Banjogrrldiaries, 2014-2019

Say “AH!”

23 Jan

Ah! The teeth! The TEETH! I have lost yet another one. What the dentist thought was a loose crown last week, turned out to be a tooth that was loose, due to the complete absence of a periodontal ligament. Did you even know that we had ligaments that hold the teeth to the bone of our jaws? I did not.  Well, we’re supposed to have ligaments that do that. This tooth did not. There is some speculation that these ligaments can calcify, just like the other ligaments that calcify on XLH-ers.

So, when Dr. Tooth begin telling me the bad news, that it wasn’t a loose crown at all, that there was no ligament to hold the tooth in, that he’d only seen this two other times in his 40-50 year dental practice, I did the UNTHINKABLE. I covered my face and cried (very briefly, 15 seconds maximum) and said, “I am SO tired of this.”

My dentist very wisely said, “We’re like Vegas around here. What happens in Vegas, stays in Vegas.” He knew that crying in public was not my normal behavior, but, like I said, it was a 15-second lapse in self-control. I think my brief cry upset him more than the loss of the tooth. It was a toss-up for me. I liked that tooth. It had a very expensive crown on it. That hole that’s in there now is not worth nearly as much as that tooth and gorgeous crown was. I admitted to two people that I had cried (briefly, mind you, 15 seconds, MAX), and they both said, “I’m sorry that it hurt so much it made you cry.” It didn’t hurt at all. I cried because this is the 15th tooth I’ve either lost, had pulled or had crowned. And this tooth was crowned and then lost. There could be more than 15 of my teeth that have been affected, but it’s hard to see up in there, even with a flashlight.

However, I learned some new dental lingo. The “dental flipper,” which I will be getting, is a device that looks like something you’d get at a theatrical shop, except this one is going to cost several hundred dollars and have only one fake tooth on it. The other lesser-known name for the dental flipper is the “cabbage catcher.” I don’t think I’m sworn to secrecy on that nickname, but it was an emotional morning, and maybe I did promise not to mention that. I can’t remember. You know how it is…lose your tooth, lose your memory.

So, I did the best thing I knew to do when I’m feeling really discouraged about my teeth. I called my mother. She always makes me feel better and I make her laugh and I love to hear her laugh. She understands all about the tooth thing. I feel so grateful that I have her to talk to about teeth.

By the way, I think the term “cabbage catcher” refers to both raw and cooked cabbage. I’m not certain about that, but when I find out, I’ll let you all know.


copyright S.G. Hunter and Banjogrrldiaries, 2014-2019

Happy New Year!

29 Dec

To my subscribers:

As the year 2013 draws to a close, I want to wish you all a Happy New Year! Thank you for your “likes” and comments over the past year. I seem to be writing less and taking more photos recently, so I have started a new photography blog that focuses on my profession, piano technology and related musical interests. If you have any interest in music, you might find it interesting. You can also follow it if you want notifications of new posts. I promise not to flood your inbox with new posts several times a day! The new blog address is:


Photo of Banjogrrl by Professorgrrl

I will still write occasionally for this blog, if something interesting and related to XLH inspires me, but right now, my time seems to be filled up with more work and less time to write. (Writing is hard work, I’ve discovered, and I only have the time and energy for one job!) My original intent when I started this XLH-related blog was to write specifically for the XLH audience, on issues of aging, health, disability, etc. As a result, I have connected with several “XLH-ers” and that has been invaluable to me. When I started, I was experiencing some physical changes related to XLH, and it has been very helpful to write about it. I’m sure there are more changes ahead of me, but for now I’m in a kind of holding pattern with nothing major on the horizon, except for possibly being able to participate in a drug study in the future.

Blessings to you in 2014!

© Banjogrrldiaries

On being hyper-focused

17 Nov

I have enjoyed photography for many years. In college, as an art major, it was my best class and probably the one in which I learned the most. After college, I even bought darkroom equipment and would set it up from time to time to develop photos in my closet (because, that was the darkest room in the apartment where I lived.) Working and developing photos in a darkroom (back in the old days, when we used film) was the ultimate in control of how my photos turned out. I liked being able to control the outcome to the “nth” degree. Today, we have post-processing programs like Lightroom (which I use) and Photoshop to control the “development” of our digital photos in areas like white balance, color, contrast, and even sharpening the focus.

And I like that control, especially when it comes to focusing. I want my photos to be crispy and so sharp they will cut you like a knife.  When I view super-sharp photos on photography websites I think, “How did that photographer DO that???” I wonder what lens he/she used, what post-processing program he/she used and how in the WORLD they got their photo(s) so sharp. Then there are other times I look at photos that others have uploaded to their sites and think, “Why in the world would you ever post such an out-of-focus photo?” or, even worse, “Why in the world would you ever post 5 out-of-focus photos of the exact same subject, barely changing your view of the subject???” Unfortunately, I spend a lot of time taking many photos of the same subject and cannot find even one that is perfectly focused to my satisfaction. It makes me crazy. I know that glass lenses are going to produce sharper images and I know that prime lenses (rather than zoom lenses) are going to produce sharper images, and I also know that a tripod and remote shutter release will reduce camera shake, that the size of the  aperture makes a difference, etc. I know all that. I can be a little obsessive about a thing.

And then there are the Impressionists. Those painters seemed to be quite successful at creating beautiful art without worrying about being hyper-focused on their subjects. I try to remember this. I have even tried to reproduce this in my photography. Below is a photo of some mountain apples that I took recently. Taken with a glass prime lens and manually focused to be a sharp as possible.

Focused Apple

This is as good as it gets with eyes that are 53 years old.

I had taken several shots of these apples. The above image is the only one I liked. Another similar shot was out-of-focus, so I decided to take the approach of the Impressionists—emphasize the out-of-focus quality of the photo to make it more painterly. Here’s what I got:

Unfoccused Apple

What the apples look like without my glasses. Monet surely had vision problems, too! I’m in good company.

I had figured out how to do this to my photos when I had a bird photo awhile back that was not as sharply focused as I wanted it. OH, I was SO disappointed! I really wanted the bird to be sharply focused, revealing every feather in fine detail, but alas, he was not. So, I played around in Lightroom, moved the clarity button all the way to the left, and pushed the out-of-focus quality of the photo to the extreme and ended up with a photo that is more painterly and, I think, pretty. Here it is:

Sparrow on the line

This bird photo may even be better because it was out-of-focus. I’ll never know, though!

This whole obsession I have with sharp focus has reminded me of one thing. Sometimes I am too hyper-focused on myself. When you have some health issue, which for me is XLH, it’s easy to focus too much on yourself. I have seen elderly people do this. They sit around and discuss their medical issues as if nothing else matters. And maybe nothing else DOES matter to them. We do have to take care of ourselves, after all. But wow, I sure don’t want to be one of those people who talks about herself constantly. I know some people who are like that—they’re a little annoying. They think they’re the only ones who suffer. “Nobody knows what it’s like…” That’s true—I don’t know what it’s like to live in your body and you don’t know what it’s like to live in mine. I try to keep the issues I have around XLH to myself as much as possible, though, because there are people around who have things a whole lot worse than I do or than I ever will. I am not suffering. There are many people who do suffer with medical ailments, and mental and emotional ones, too.

In fact, I mostly feel blessed. I am thankful for each day that I can walk, see beauty in the world, hear birds singing, taste an autumn apple and smell garlic cooking on the stove. I would like to feel blessed and fortunate 100% of the time, but alas, occasionally I fall into thinking about myself too much, and hyper-focused on me. If only I could step back, move the clarity button over to become less focused on myself, and enjoy the impressionistic view of myself, that view being that overall, I am fortunate, blessed, lucky, and happy.

But as for being hyper-focused in my photography—well, that’s not going to change!

Rooster on the Left

Love those fine feathers!

Copyright Banjogrrldiaries and S.G. Hunter, 2013-2018.


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