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

More of the same

4 Sep

Where have I been? I see that I haven’t blogged in a month. A month! August is one of my busiest months with my work, so I’ve mostly been working, coming home and putting on the heating pads.

I’ve also been knitting. As I mentioned in my post on August 2nd, a book that I co-authored is now published and available. We had some friends who were very supportive during this long writing process. They encouraged us to keep writing and to publish it, not just in the e-reader format but also in paperback so that people who still love the feel of a “real” book would read it. They also enjoyed imagining who would play the characters in a movie of our book! We all agreed that Meryl Streep should be in there somehow so that it would be a blockbuster. Ha! What wonderful friends we have to encourage us to press on.

These same friends also have been supportive and loving with regards to my XLH. I cannot ask for better friends and I hope every XLH-er has the kind of friends that these folks are. I knitted bookmarks for them simply because the process of knitting makes me think about and be thankful for the person for whom I am knitting. I am very grateful as I ponder the love that I have in my life.


For you knitters, this is a drop stitch scarf pattern that I adapted to make the bookmark. I used size 2 double pointed needles and sock yarn. Crochet yarn also works well. If you want your bookmark to be stiff, try some starch. has many bookmark patterns but this pattern that I used is simple and can be done while watching TV, but probably not while reading.

As for current news, I’m due for another 24-hour urine collection followed up by blood work. I’ve had a couple of medicine changes this year. I’m dreading it. The last time, it took three needle sticks (2 trips) for the phlebotomist to get it right. And the doctor didn’t get all the test results faxed to him, either. Sometimes I wonder how people, especially elderly people, deal with all the craziness in the medical industry. I sat with Professorgrrl’s mother in the ER one night last week and marveled, shaking my head, that Professorgrrl had to convince them that her mother did NOT need another chest x-ray, since the doctor’s office had just done a chest x-ray one hour prior to arriving at the hospital.

All of you who deal with chronic health issues probably have occasional dread of a medical visit, so I’m sure I’m not alone. You may dread going to the doctor even if you don’t have a chronic issue. It’s sort of like taking your dog to the vet–you know he/she will come back with fleas. I half expect to come back from any doctor’s visit with a cold or virus (but not fleas, thank goodness!) But, I try to remember to be grateful that medical care in this country, even with it’s craziness, is better than the availability of medical care in many other countries.

So that’s what’s going on with me. How about you, blog-reading friends? I hear from some of you occasionally and it always lifts me up to hear from you, especially the XLH-er’s. I think of you often and hope you’re hanging in there!

Copyright 2015, 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

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

On the brink of my 55th

6 Jul

Tomorrow I will turn 55 years old. My body feels like 75 sometimes, and my mind feels like 35 most of the time. Young at heart, with an occasional “old lady” look of uncontrollable tufts of white hairs that I can’t seem to manage with my hair brush. This is how I look before morning coffee.

Grumpy Bird

In the last couple of months, I have not thought too much about how I feel (regarding the XLH). My broken foot is feeling much better, and I am taking a significant amount of time off from my job during the month of July, which gives my body time to rest from my physical job.

What I have felt in the last couple of months has not been about myself much at all. I’ve mostly been feeling bad for other people who have had some difficult times. Serious illness, death and unexpected major  surgeries have touched the lives of some of my friends and family members.  I’ve felt fortunate that compared to what others have suffered, I’ve been doing okay.

My mother has been an inspiration to me recently, too. About two months or so ago, she fell and her artificial hip popped out of joint. It took a doctor and three of her assistants to pop it back in when my mother showed up in the emergency room. (They had to sedate her first!) My mother told me later it was THE worst pain she had ever felt. She’s been recovering at home for several weeks now, with a lot of restrictions on her activity. I have spent some weekends with her and I have been amazed at how easy she has been to care for. She doesn’t complain or whine or gripe. We’ve had fun watching some TV, talking and singing duets while I played the ukulele. I just don’t know if I could be as good a patient as she has been if I were ever put to the test.

I have mentioned in previous blogs that there has been a question as to whether or not I inherited my XLH from her, since she has some of the symptoms of people with this disease/disorder. I just found out last week that some recent blood work she had indicates that she does NOT have XLH. That would make me a spontaneous case.

When my sister told me my mother’s blood test results over the phone last week, I said, “Wow. She doesn’t have XLH! I’m adopted.”

She laughed out loud and said, “You’re a fluke.” We used to ask our mother when we were children if we were adopted and made her show us our birth certificates. I don’t know why we were convinced we were adopted.

But now that I know I didn’t inherit a mutated X chromosome from her, I am worried! What if one day I’m temporarily disabled (like she is now) and I find out that I also did not inherit her sweet nature and pleasant personality? What if I also had a mutation on the attitude gene and become a total grouch and a whiner? I take 7 pills a day for my XLH but there’s no pill for grousing and whining. Seriously, though, I hope I can be like her. I’m sure I will be put to the test one day.

In the meantime, I try to daily count my blessings. I try to enjoy friends when I’m with them, enjoy my family when I see them, inhale the sweet gardenias that are blooming right now, look at the sky, the clouds, the stars, and take in all the beauty that I can.

I like to watch the hummingbirds feeding on my back deck and remind myself to savor the sweetness of life, whenever I can, wherever I can.

June Hummer

Copyright S.G. Hunter and Banjogrrldiaries, 2015

My Father

20 Jun

Since my blog focuses on growing up and living with X-linked Hypophosphatemia, this is a good time (Father’s Day weekend) to write about my father’s role in my life.

My early memories of my many medical appointments as a child were of having my blood drawn regularly. I still have to have that done about every three months, to monitor how well I’m responding to my medication.  My memories of my childhood visits are of sitting on my dad’s lap while the nurse drew my blood. I did it so often that I now have no problem being “stuck” with a needle.

I remember my father saying to me, as the nurse was getting the needle ready, if I didn’t cry he would buy me a box of Cracker Jack  after it was all over. I loved Cracker Jack, so being tough while I got stuck with a needle was definitely worth it. In retrospect, I wonder if he was the one who didn’t want to cry when I got stuck with a needle.

Last week, when I went to have my blood drawn, the (new) phlebotomist stuck me in my right arm, filled up two vials, and taped on gauze, telling me to apply pressure. You know, the usual. Then she realized that she didn’t get enough blood. So, I stuck out my left arm for her to stick and get two more vials. When I left the office, I was thinking about the box of Cracker Jack that felt I deserved! Two days later, when my doctor’s nurse called and said they needed MORE blood because they had made a mistake with the vial for the parathyroid hormone test, I was annoyed. After I went back to have my third “stick” in four days, I really thought I deserved a box of Cracker Jack! I even considered calling my father to complain about my bad luck! But I didn’t. The memory, though, cheered me up. I may still get a box yet.

Nowadays, my father asks me regularly, “how are your legs?” or “how’s your rickets?” He usually follows up that second question with, “I know it’s called something else these days, but all I can remember is ‘rickets.'” In 1961, when I was diagnosed, it was called Vitamin D Resistant Rickets (as opposed to nutritional rickets.) Today, it is called X-linked Hypophosphatemia, or XLH for short. He is the only person who asks me that question regularly and I appreciate his love and concern.

He has aged quite well and mellowed out quite a bit over the years. He still has a great sense of humor and is as handsome as ever. I feel very lucky that I still have my dad when many of my friends do not.

So now, I’ll post a photograph of a painting I did of him when I was in high school. Our family camped each summer in a pop-up camper, and I painted this from a photograph that I had taken of him on one of our camping trips.


He’s not nearly as grouchy as he looks, then or now. I favor him, especially with the morning head of hair and before the first cup of coffee.  Thankfully, I don’t have as much facial hair!

Copyright Banjogrrldiaries, 2015


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