Tag Archives: rickets

Happy New Year 2017

6 Jan

Hello to my subscribers and new readers of my blog! Happy New Year! I am snowed in right now, (and in the south that means there has been a prediction of snow, but not necessarily actual snow), so I thought I’d take a few minutes to check in with all y’all, especially my fellow XLH’ers and wish you all the best in 2017.

It’s been several months since I’ve written a post and I’ll give you an update. Last year, I was accepted into the adult drug trial for KRN-23. For those of you who aren’t familiar with the trial, it is a drug trial to study the effectiveness of the drug KRN-23 on children and adults with X-linked hypophosphatemia. I am in the third phase of the trials, which is for adults. During the first six months, I did not know if I was receiving the actual drug or a placebo…top secret! Only the pharmacist knew and whoever studied my lab results whenever my blood was drawn, which was (and is) quite a lot! During the second six months of the study, I began receiving the actual drug FOR SURE.

I can say this for certain, too…my broken foot, actually feet, are feeling much better. Oh sure, there are days when I stand too much and my feet hurt at the end of the day, but all in all, that is where I have felt the biggest difference. (I knew my left foot had a fracture, but I didn’t know about the other one until I was told by the study coordinator that the doctors were closely following both feet due to fractures. I thought my right foot just hurt a lot. Go figure.) I’ve also had an increase in energy. That’s been a good thing.

I’m very excited about the promising results for children from this drug, which is an injection, by the way. I sort of doubt that there are many XLH’ers who are afraid of needles, since we often get stuck, poked and prodded  from early on if we were “fortunate” enough to be diagnosed as children. I may dread the needles, depending on who’s getting ready to stick me, but I’m not afraid. Not to brag, but I do have great veins that are easy to find and stick a needle into.

The only side effect I seem to have experienced is restless legs. And what an aggravation it is! The study doctor, seeing that I was borderline anemic, suggested that I take an iron pill daily, since anemia can also cause restless legs. I have faithfully done that and my restless leg “syndrome” has not abated. In fact, I’ve decided that the day after I have my monthly injection, I may as well take the day off from work because it will be a sleepless night that first night. I feel like I could do kickboxing if I were younger, my legs are so restless.

And yes, I’ve tried the “Ivory soap in the bed” trick that some people swear by for restless leg syndrome, and it has not worked. I will say, though, when I tried it, my feet and legs smelled very nice in the mornings.

I’m crossing my fingers that this drug will get approved and will become available for XLH’ers soon. I’m worried about insurance, of course. Even though my former XLH treatment (a combination of calcitriol and phosphorous) was the ONLY valid treatment prior to this drug, my insurance refused to cover the calcitriol. So, who knows what insurance companies will say about this new treatment, which will, no doubt, be expensive. And who knows what will happen to those people who, perhaps for the first time, were able to get health insurance for their pre-existing condition due to the changes in the insurance laws. That all might change, too. There are some promising and also scary things on the horizon in 2017. I’m crossing my fingers. And praying especially for my “tribe,” i.e., other XLH’ers.

I have made no resolutions for this year. I can’t seem to follow through with those. But I do plan to continue doing the things I enjoy doing, like playing music and working and one of my newer hobbies, rescuing cast iron cookware from thrift shops and restoring them to usable condition, while extolling the virtues of Teflon-free cooking. I’ve baked about 7 Bundt cakes in the last two months in my restored cast iron Bundt pan and I might even bake one while I’m “snowed in” this weekend. Feel free to send me your favorite Bundt cake recipes. Which I will look at…if I don’t lose internet. And electricity.

Good thing I still have some leftover cake from the last one I baked, just in case!

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Copyright 2017, S. G. Hunter and Banjogrlldiaries

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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!

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.

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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

Point of View

6 Oct

I had an appointment with my endocrinologist last week that confirmed something that I have long suspected–I have an odd point of view about some things. Now, I know that I do have a unique point of view, literally, when it comes to my short vantage point. I mean, I have seen more belt buckles in my lifetime than most people, which is why I hate large parties with complete strangers.

What led him to conclude that my way of thinking was a unique sort of logic came about as a result of him confirming what medications I currently take. In August, he had prescribed two new meds for me, calcitriol and phospha 250, and that was going to add 5 pills per day to my pillbox. Those of you XLH-ers who take those meds know that while the calcitriol is small, the phospha 250 is what my mother would refer to as a “horse pill.” Those 3 phospha pills and 2 calcitriol pills per day simply did not fit in my pillbox. So, I guess I’m vain. When I realized they didn’t fit, the first thing that came to my mind was, “Something’s got to go,” not, “I need a bigger pillbox.” I decided that since my cholesterol pill is doing a great job of lowering my bad cholesterol, then I could probably eliminate the flax seed pill and the fish oil pill, both of which are quite large. I did that, problem solved. Quite honestly, I associate huge pill boxes with old age. I know, I know, that’s really not fair, but what can I say? I’m just not ready for the big pillbox that has four compartments for each day. I can’t bring myself to carry a pillbox that qualifies as “carry-on luggage.” I am vain, just between me and you.

Blue Pill Box

Which leads me to reveal a secret dream that I’ve had for many years. I discussed this with a friend several years ago, when I bought my current pillbox, the one that seems to be shrinking. We felt like people in our generation would appreciate a more whimsical, fun pillbox. We both agreed that a pillbox that is more like a Pez dispenser would be way more cool to carry around and whip out at the restaurant than the boring ones that are currently available. And now that I have pills that are supposed to be taken with meals, the calcitriol and the phospha 250, I think it’s time to work on my invention.

Just remember: You first read about it here!

Pez Pill Boxes

My current vintage collection consists of Woodstock Wednesday, Snoopy Sunday, Tasmanian Tuesday and Fred Friday. I need three more, for Monday, Thursday and Saturday. Suggestions?

Fred Friday pills

Hmm…those doggone phospha pills are a little long. I guess I’ll have to stand them up or cut them in half. Still, though, way cooler than a box.

Copyright S. G. Hunter and Banjogrrldiaries, 2014

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.

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.