How do I thank thee? Let me count the ways.

29 Feb

Hello fellow XLH-ers and other followers of my blog. Writing another post has been on my “to-do” list, but life has gotten in the way!

I’ve been inspired to write about saying “thank you.” It seems I’ve had many opportunities to say that two-word phrase recently. I’ve come to realize that saying thank you works for many situations, when other words fail me. There are three specific ways that I’ve found it to be useful.

#1 The Sarcastic “Thank you.”

#2 The Genuine “Thank you.”

#3 The “I’m-At-a-Loss-For-Other-Words Thank you.”

The #1 Thank you, sarcastic version, I haven’t had to use much. A possible use for it might be when someone says to you, “Wow, you look like $&*@ today.” Your response of “thank you” should be accompanied by an appropriate facial expression, like a smirk or that little head bobble that teenage girls are so good at doing. I’m still working on the head bobble.

The #2 Thank you, the “genuine thank you,” is one  I hope I use regularly. I hope I live a life of genuine thankfulness. Recently I had occasion to use it regarding my XLH.

An acquaintance stopped me at a social event and asked, in the most southern “bless your heart” drawl you can imagine, “Banjogrrl, may I ask you a personal question?”

“Sure,” I said. “This should be interesting,” I thought.

She asked, “Does it pain you to walk?”

I wish I could spell out “pain” the way she said it, but it was at least two syllables and stretched out as only we southerners can do it and used as a verb. (Think Julia Sugarbaker from the TV show “Designing Women,” although I think Julia was not nearly as sweet as my acquaintance is. But Julia’s southern drawl was great.)

“Yes,” I said, wondering if I need to work on my facial expressions a little more while walking. Less grimace, less tension or something, I guess.

“Well, it pains me to walk, too and I know a little how you feel, although we probably have different health problems.”

Awkward silence. “Thank you for asking,” I said to her. I was genuinely touched by her reaching out to connect with me. We didn’t go into what our health problems are, but it was a mutually understood connection.

I’ve had a couple occasions to use the #3 “I’m-At-a-Total-Loss-For-Other-Words Thank you.”

One was when another acquaintance out of the blue and with other people around pulled something out of her bag, handed it to me and said, “Have you ever tried grape seed extract? I’ve been watching you and I think this would help you. I take these pills every day and now my hands aren’t as stiff. You should try these.” Along with the bottle of grape seed extract was a brochure explaining the benefits of said product.

I didn’t know what to say to her except, “Thank you.” There were other people around and it wasn’t a good time to do the 30-second speech about X-linked Hypophosphatemia and why I might not move through this world very gracefully. I didn’t open the  bottle of pills and knew I needed to return them. A couple weeks later when she asked if I had tried them yet (maybe there was no visual improvement in my walking?) I told her, “It’s complicated but no, I have not used them and I’m returning them to you to give to someone else who might benefit from these.” Let me tell you, if grape seed extract actually helped the 1 in 20,000 people in the world who have XLH, then the pharmacies would have those pills flying off the shelves.

The other time I used the “I’m at a Total Loss for Words so I’ll Say Thank You Instead” was when I was chatting with an acquaintance as I was about to get into my car. She asked me, while following me around to the passenger side so that I could put something in my front passenger seat, “Banjogrrl, you seem to be moving a bit slower these days. Are you having trouble with your back?”

Once again, not willing to give the 30-second XLH explanation speech and as I made my way back around to the driver’s side, I responded with “I do have some bone issues.” Part of the reason for being non-specific with people is that it requires a certain level of vulnerability and frankly, I was ready to sit down in my car and go home and just not interested in being vulnerable in that moment.

So, as I was getting into the driver’s seat, she leaned in, placed a hand on my shoulder and exclaimed in all earnestness, “Be healed in the name of Jesus!”

!!!

I looked up at her sincere face and said, “Thank you,” because this time, I really DIDN’T know what else to say. We said our goodbyes and then I drove away.

Sigh. As I drove away, I started to feel aggravated. What I wish I could have said was,  “I was born with a rare disease called x-linked hypophosphatemia. I have noticeable physical characteristics of XLH and then some that aren’t so noticeable. I was diagnosed when I was ONE YEAR OLD. I’m pretty sure my parents, both of whom are alive and are people of faith, have been praying for me for the last FIFTY-FOUR AND ONE HALF YEARS. What makes you think that God would listen to you and your quick prayer of healing and not my parents?”

But of course, I didn’t say that. I said, “Thank you” because I was at a total loss of words. Well, at a loss of words that I could have said without my voice rising to a fever pitch.

Later, I recounted these three incidents which happened in a span of a few weeks to Professorgrrl and asked her, “Am I looking that bad lately? Have I gotten worse and don’t even realize it?” I mean, I know I’m not improving and healing. The kind of healing that woman prayed for is not going to happen. Healing with a bottle of pills isn’t going to happen either.

How could it? Do some people think I could wake up one morning and be 6″ taller, have all my teeth and a perfectly straight back and legs? If I did wake up like that, I wouldn’t even be me. Being the shortest and “bowleggedest” kid in the school is part of who I am. My world view has been shaped by XLH. Life is not black and white through my eyes. God does not heal or fix children with genetic disorders. God left it to the people to do that. And so far, the people can’t fix this but only a certain amount. If you want to pray for us, pray that we can cope. Pray that we will keep our sense of humor. Pray that we can find doctors and dentists who are interested in taking us on as patients. Pray that we can get health insurance after the Affordable Care Act gets repealed. Pray that the insurance companies will start covering ALL of our medications. Pray that the new drug that is now being tested will help us. Pray that parents will teach their children that it’s wrong to make fun of other children who are different. Pray, pray, pray.

And for those honest, real prayers, I say, “Thank you.” (And that’s a genuine thank you.)

By the way, today is Rare Disease Day. Go hug someone with a rare disease or who is a caregiver of someone with a rare disease.

Copyright  S.G. Hunter, 2016

 

 

 

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.

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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. Ravelry.com 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 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

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

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