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Taking a break

23 Jul

So, I still haven’t recovered from my trip to Denver (see last post), where I did a LOT of walking, including breaking my personal record of steps taken in one day. I’ve had a nagging pain in my right foot since then and I went to the orthopedist last week to get it checked out. Sure enough, I have an insufficiency (stress) fracture in my right foot, almost a “Jones fracture,” according to the doctor. I was not surprised, though. Annoyed, yes; surprised, no. I broke my previous record of daily steps and broke my foot all in one trip.

What did surprise me was the x-ray, which, the doctor pointed out, showed 2 previous fractures in my right foot at sometime in the distant past. I honestly don’t do a great job of interpreting the pain scale very well…I get a pain in my foot and think, “ow, that hurts, so I think I’ll sit down” instead of “yowza, that hurts like the devil, let me go to the doctor.” The difference between 🤨 and 😱. I’m learning, though, to interpret those pains and rely on a doctor’s wisdom (“stay off your feet, wear a hard inflexible shoe for a few weeks”) as I age. I guess it’s about time.

The GREAT NEWS about this is that after one month of my right foot hurting and being broken, the x-ray showed that it is healing. I attribute this to the study drug that I’ve been on for 2.5 years, which was called KRN23, then Burosumab and now, commercially known as Crysvita. When my left foot broke about 4 years ago, the pain went on for months and even the orthopedist said, “well, it’s healing, but it’s taking its own sweet time.” At that time, I had just started the “old” treatment of phosphorous and calcitriol. It eventually healed, but still hurts at times, which the orthopedist said would always be the case. Feet get a lot of abuse.

But, in my opinion, my right foot is healing at a much faster rate, thank goodness. I’m trying to be kind to it. Fortunately, the only activities I do that require being on my feet are fishing. So, lucky for me, I caught this trout a couple weeks ago on the sixth cast, and then immediately stopped fishing and rested, to give my feet a “break.” Well, really, it was to give the fish a break. I only needed one fish for dinner, no more.

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Copyright 2018 Banjogrrldiaries and S.G. Hunter, All Rights Reserved.

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Step(s) Count

23 Jun

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I am feeling pretty pleased with myself this evening. I am on a short vacation with Professorgrrl in Denver, CO, and today I reached a new all-time high in the number of steps I took in one day. Over 15,000!

I have been counting steps with my little Samsung phone health app for about 2 years, and my daily goal is 6,000 steps. I feel like that’s a good goal for me because it’s attainable and for the last two months I have reached it almost every day. I know that the experts, whoever they are, say that 10,000 steps are a better goal but when you have some physical limitations, as many folks with XLH have, and many much worse than mine, it’s good to have attainable goals. I rarely go over 8,000 steps a day.

Today, though, we toured the Denver Botanic Gardens and also went to a Colorado Rockies baseball game and we travelled by bus and on foot. Add a little bit of getting lost or turned around, and by the end of this day, I have walked over 15,000 steps. Don’t get me wrong…my feet and knees are killing me and all the other bones below my navel are complaining, too. I have increased my nightly dose of pain meds tonight, knowing that all those old bones will still be mad at me in the morning.

However, let me just say that I honestly don’t think I could have done all this without the help of the trial drug. (Yes, I’m still in the XLH drug trial.) If nothing else, it gives me energy to keep going. It’s not a cure, and it doesn’t reverse the damage that 56 years of living with XLH did before I started it, but my energy level has increased which has helped me to be more determined to keep being as physically active as I can.

My drug trial will end in September. Honestly, I am worried. I am worried that my insurance will refuse to cover it. I’m worried that they will only cover a small part of it and my copayment will be ridiculously expensive. I’m worried that families with children who have XLH will not be able to afford it and children with XLH really should have access to this medication. I am a little bit of a worrier anyway, but given the state of healthcare in the USA, I don’t think I’m over-reacting here. I hope that the powers who control us and our health (insurance, government, medical people) realize that a middle-aged adult who can still work and be physically active thanks to a monthly injection is a value to our society rather than a burden. I am a hopeful worrier.

In the meantime, and for the next few months, at least, I will continue to plug along, continue to walk (my new shoes, New Balance 880’s have helped!), continue to aim for those “badges” and positive affirmations from my Samsung phone health app (“You did it! You reached your step target with time to spare!) and continue to be hopeful that we XLH’ers will get the medicine we need to keep on keeping on.

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Copyright 2018, S.G. Hunter and Banjogrrldiaries

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.

 

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 

 

Ode to a Gallbladder

9 Feb

Well, as of yesterday morning, she left me. My gallbladder, that is. We had a close relationship for almost 57 years, practically inseparable, but she “done me wrong.” I loved her, though. She helped me to digest fried chicken, fried catfish, fried oysters and French fries. If you’re a praying person, pray that I will be able to live without her, and that the anesthesia and post-surgery pain medications make me forget she ever existed. The day prior to my surgery, I recorded this song as my way of saying goodbye to my gallbladder.

Now, you may be thinking…this is a blog by a person who has XLH, so how is gallbladder surgery related to the XLH theme of this blog? I guess it’s not exactly related. However, as a person who has for years tried to live on only over-the-counter pain medications rather than stronger prescription pain relievers, last night after the surgery and today, I’ve enjoyed the side effect of the Tramadol they prescribed for me, that side-effect of having very little back pain and knee pain. Nice!

Thanks all for your good thoughts and kind words for the post I wrote a couple days before my surgery. So far, so good, as I embark on a new gallbladder-less life.

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

Life’s an Adventure

5 Feb

I once read a comment in an online support group that just because you have a rare disease doesn’t mean you’ll not have other health challenges as well. I have certainly discovered the truth of that in the last year!

Last spring, I had several fibroid tumors removed and certainly won’t bore you with the details of that little adventure, and this week, I will be having my gallbladder removed, due to having several polyps in it, one of which is the maximum allowable size limit according to my surgeon. I asked my surgeon if my gallbladder weighs 10 pounds, because that’s about how much I’d like to lose, if at all possible. She was a serious sort and I’m not sure she realized I was making a joke. Nevertheless, as I gazed upon the life-size illustration of the human abdomen hanging on the examination room wall, I realized that the gallbladder is quite small and likely doesn’t weigh anything near 10 pounds. So, I’m out of luck on the easy way out of losing weight. Sigh.

With this upcoming surgery there is a list of medications, which included vitamin D and a few other pills, that I had to stop taking five days before the surgery. Since I am in the KRN-23 drug study and have to keep meticulous records on any medication I take or stop taking, this just adds to my “job” of record-keeping. It also adds to the job of record-keeping for the study coordinator and the home health nurse. Almost any medical event I have, even a headache, is considered an “adverse event.” So, I have to record a start date and a stop date for the pain medication I might take for that headache. Thank goodness for my google calendar that lets me highlight all my medical events in yellow so they’re easy to find when she or the home health nurse asks me if I’ve had any adverse events. If I had to keep this all written down on a piece of paper, I’d probably lose the paper by the time I had to report this to the nurse or study coordinator. So far, I haven’t lost the google calendar that’s on my phone, though. This week I will likely have several yellow medical events to report. I can’t remember why I designated the color “yellow” for all medical-related activities on my calendar. Maybe it’s because that’s the color of my cholesterol pill and the Vitamin D pills.

Anyway, I’ve had lots of encouragement from friends about the surgery and also advice on what I can eat afterwards or not eat and how routine and easy this surgery is, except for the gas which will eventually “work” its way out and I’ve heard great things about my doctor. I’m thankful to have friends with whom I can share this latest adventure. There’s nothing like a good group of friends to get you through stuff like this. I’m looking forward to having them come over afterwards for a visit and to share a bowl of jello with me, that I will serve in vintage Fire King glass bowls. Just because I’m having surgery doesn’t mean I will forget my classiness when it comes to being a hostess!

Have a good week!

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“Still life with Box of Jello and Vintage Fire King bowls”

Copyright 2017, S.G. Hunter and Banjogrrldiaries. All Rights Reserved.