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Another One Bites the Dust…

16 Sep

 

…pun intended!

Tooth #4 is no longer a pain, because it’s GONE! Check out the notch in this tooth:

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I’ve been dealing with this aggravating tooth for several years. Eventually, the notch got so deep that the nerve was exposed. My dentist tried patching it about 7 years ago and the patch fell out while eating a bowl of chicken soup a short time later. He patched it again, and that patch fell out, too. So, we just kept an eye on it until a few weeks ago when it really started bothering me. I was actually glad when he told me about three weeks ago that he recommended extraction. There was also quite a bit of bone loss in the gums around it, so it was not going to make it. I thought it would be better to have it professionally extracted rather than do like my uncle, who pulled his own teeth. (I previously blogged about him a few years ago.) I may be crazy but not THAT crazy.

I feel fortunate that my dentist is the THE BEST Novocain injector (or whatever you call that) on the planet. I hardly felt a thing. Until I went to the checkout counter to pay my bill. I felt that.

I know many of you XLH-ers can relate to the tooth problems I’ve had. It’s an aggravation, isn’t it? Not to mention what it does to your self-esteem. And ability to eat. And bank account. And the smile factor. Sigh.

As I’ve said before, though, I love mashed potatoes. In fact, that’s what I ate for dinner Wednesday night. They were so good. Last night I ate a bowl of lentil stew, using a recipe from a cookbook called “Eating the Bible,” by Rena Rossner. (Now, THAT  would literally be hard on your teeth!) This lentil stew recipe was inspired by the story of Esau selling his birthright to his brother Jacob, as found in the book of Genesis. The author was then inspired to write a book based on the Jewish foods mentioned in the Hebrew bible, found in the books of Genesis, Exodus, Leviticus, Numbers and Deuteronomy. Not only did she create recipes for the modern kitchen inspired by these ancient stories, she wrote commentary on each of the stories, based on her research and her reading of the texts both in Hebrew and in English.

It’s  a very meaty book to sink your teeth into. Yeah, I had to say that.

I bet Ms. Rossner would be surprised to learn that a recipe from her book would help a person with a rare disease to eat following a tooth extraction which has limited my ability to eat foods that require even minimal chewing. We’re all so interconnected anymore. Thank you, Ms. Rossner. I will make that recipe again. In fact, I will probably make it even after my gum heals and I can go back to eating some “chewy” things. It was that good! I’m looking forward to the leftovers.

My dentist told me that he believes this is the last tooth I’ll lose. That’s good, because I don’t have many left. I still can’t convince him that I should receive a discount on my cleanings, though. Doesn’t that seem fair to you all? I mean, would you charge the full price of a pedicure to a one-legged person? And my cousin with one eye…should he be required to buy two contact lenses? Why should I pay full price for a cleaning when there are a LOT of gaps in my mouth, mostly in the back which is hard to get to anyway. It’s just not right.

At the very least, I should get a bigger bag of parting gifts when I leave…more toothbrushes, tooth paste, floss and floss threaders and maybe even some sugar-free breath mints and some lip gloss.

And a recipe book for soft foods.

 

Copyright 2017, Banjogrrldiaries and S.G. Hunter. All rights reserved.

 

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I Am a Pre-existing Condition

13 May

Hello fellow XLH-ers!

A couple days ago, I got an essay published on a religious blog called “Unfundamentalist Christians.” It generated quite a discussion, especially on the Facebook page version! Whew! Don’t read all those comments unless you have thick skin.

I’m concerned about the future of health care in America and I do see that the government can play a role, for the good of our society, in making sure all of its citizens have affordable health care. As much as many people of faith like to say that it’s not the government’s place to “heal the sick,” The Church, as a whole, is now not that kind of organization. We’ve had about 1,984 years to prove that we’re interested in healing the sick, feeding the hungry and caring for the poor, but frankly, we have failed to do that on any kind of large scale.  I have personally failed, to be quite honest. My indictment on the church is also on myself.

I willingly pay taxes to insure there is money for children to be educated, although I have no children.  I would like to think that we, as citizens of the USA, would also be willing to pay taxes to insure affordable health care for all, including those of us who were born with pre-existing conditions. I realize all the complexities around doing this, though.

Anyway, if you want to check out my essay, here’s the link to the website:

I Am a Pre-existing Condition.

As always, I welcome your comments, even if you disagree! We do share something…either you have XLH or you love someone with XLH, so hopefully our common ground can keep the conversation open. I do care about my readers with XLH, no matter where you fall on the religious spectrum. I feel sure many of us who live in the USA are nervous about our futures in the health care system, even if we disagree on how to fix it and who should fix it.

More later!

 

Copyright 2017, Banjogrrldiaries and S.G. Hunter. All rights reserved.

 

Stories

8 Apr

Long Exposure with old Pentax 35mm lens

When I was about 10 years old, my family (parents, younger sister and brother) went on one of our camping trips to Myrtle Beach in South Carolina. We always stayed at the Ponderosa campground there and this time was no different. We had a state-of-the-art pop-up camper called a Nimrod, a good solid Old Testament name which means “mighty hunter.” I always had fun at the Ponderosa Campground…each morning I would embark on a hunt for perfect seashells. This was back in the day when you could allow your children to walk on the beach by themselves. I always saved my money for these camping vacations so that I could go to the camp store and buy a souvenir for myself, usually a comic book. It’s always a good idea to have fine reading material at the beach, and I knew that even at the tender age of ten.

This particular trip was different, exciting and we all lived to tell about it. A water spout, which is basically a tornado on water, ripped through the campground one night while we were there. It was a very violent, windy and rainy storm that was scary for our parents as well as the three of us kids. My mother and father stood outside the rocking camper and held it down while the three of us stayed inside. I white knuckle clutched my red letter edition Holy Bible with the white leather cover and a zipper and prayed as hard as any ten year old could pray while my sister, 8 years old and my brother, 5 years old wailed. I don’t remember what promises and bargains I made with God that night, but I hope I’ve fulfilled them all. We survived, unscathed. No pine trees fell on us, and the stakes and poles of the add-a-room were not ripped out of the ground. We were camped up on a little knoll (in the cheaper campsites, not the more expensive ones on the beach front) and so the family with six kids in the big canvas tent down in the little valley below us got all the water. The adults were up to their knees in rainwater, but they survived, too. And the big “slide-slide” ( do y’all remember those?) down the beach from our campground was almost completely gone…nothing left but the steel frame. The expensive beach front campsites didn’t fare well, either.

Forever after, I told this exciting story to anyone who would listen. It had been the most exciting thing that had ever happened to me and I loved a good dramatic story where the good people survive. It was one of my favorite stories to tell to anyone who would listen.

A few years ago, at a family Christmas gathering with all the next generation kids gathered around, my little brother, the 5 year old in my story, told this 40+ year old story. And, remarkably, he told it from MY point of view! In his story, he was the kid clutching a bible and praying to God while his two older sisters cried. As he told my story, I said nothing. I just stared at him in total disbelief. He didn’t even own a bible at the age of 5 and if he had owned one, he couldn’t have read it since he wasn’t in school and we didn’t have kindergarten back then. (Well, only the rich kids went to kindergarten.) But, I remained silent and listened to him tell my story. I did not correct him.

I had a rare moment of realization instead. I had told that story so many times, it had become his story, too. The story became his memory of what he experienced as a five year old boy. My story was also his story. In essence, it was our story. A family story.

I have mixed feelings about all that. Having my story become a part of the “canon” of our family’s stories is sort of an honor. On the other hand, when does a story like this become YOUR story, one that you own and in which you are fully present? Rather than recounting my story, I would like to hear my brother tell this story from his point of view as a terrified five-year-old.

For years, I rarely mentioned to anyone my “story” of having XLH, how I felt as a child wearing braces or going to the doctor a lot, having my blood drawn, etc. I know that some of my friends were surprised that I even had a genetic “condition” when I “came out” a few years ago. Initially, many of my stories were stories of how others acted in my story…how my grandmother felt and how my parents felt about having a child or grandchild with XLH. It’s true, though, that their points of view are part of my story. But they’re not the whole story. As I have become more actively involved in taking care of myself as an adult with XLH, reading and writing about the disease, going to doctors and participating in clinical trials, it has become MY story. I own this now. I am not telling someone else’s story, but I am telling mine.

And my story has been a little bit of a wild ride and sometimes I feel like I’m a kid clutching my Holy Bible in a tiny little pop-up camper of a body while the winds rock it back and forth, wondering how this is all going to turn out. Wondering what promises and bargains I can make to God to insure my safety in the end. But through this, I have been surrounded by some kind souls who have prayed for me or helped hold down the fort (especially Professorgrrl!) or have just been quietly present, asking how I’m doing occasionally but not too much.

It is my story, yes, but I am not alone in it.

 

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Copyright 2017, Banjogrrldiaries and S. G.  Hunter 

 

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

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

 

 

 

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

Happy belated 25th birthday, ADA!

1 Aug

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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.

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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