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

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.

image

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

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!

Changes

17 Oct

Things change. I don’t always do well with changes, especially when they affect my health. Those of you with XLH know that sometimes things can change rather quickly as we age. They certainly have for me. This past week, I had to address my sudden rise in blood pressure, which of course, doesn’t have anything to do with XLH and isn’t a side effect of the medications we take, but can simply be just one more thing we can get in middle age. For me, I halfway expected it, since both my parents have high blood pressure. I assumed I had just gotten another “genetic thing” to deal with.

So, I went to my family doctor, at the strong suggestion of my endocrinologist, to get her wise counsel on this problem. Her first thought is that my allergy medication, Claritin D-12, is the source of my problem. “If you were a smoker, I would tell you to stop smoking,” she said. “If you used crack cocaine, I’d tell you to stop using crack cocaine. But I am going to tell you–no more decongestants for your allergies!” If any of you readers live in or near the allergy capital of the world like I do, then you know that this kind of change is a little scary. I mean, I get some bad sinus headaches, and I’ll take my bone pain over a nauseating headache any day. Seriously. I will do almost anything to avoid those headaches.

But, I stopped taking all decongestants. That’s it, I’m done. She prescribed another allergy medication to take its place. We’ll see if it works. My blood pressure has gotten back to normal, so far. Maybe those parental genes haven’t kicked in yet. The good thing is that Claritin D-12 was a large pill, so now I have more room in my pillbox, and if you read my post from a couple weeks ago, you know that’s important to me. Therefore, I added the fish oil pill back into the box, since it is supposed to help with–yep–blood pressure.

Some changes are GOOD!

And, one of my favorite changes are the changes of colors around here as we transition from summer into fall. Yeah, I know, leaf mold bothers some people, but gosh, it sure is pretty. I will leave you with some photographs I have taken in the last two weeks, to celebrate some beautiful changes I enjoy. Happy autumn, friends!

Mabry Mill

Autumn at Mabry Mill

Behind Mabry Mill

Behind Mabry Mill

Widow Falls

Widow Falls at Stone Mountain in Elkin, NC

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

Follow

Get every new post delivered to your Inbox.

Join 30 other followers