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.

Point of View

6 Oct

I had an appointment with my endocrinologist last week that confirmed something that I have long suspected–I have an odd point of view about some things. Now, I know that I do have a unique point of view, literally, when it comes to my short vantage point. I mean, I have seen more belt buckles in my lifetime than most people, which is why I hate large parties with complete strangers.

What led him to conclude that my way of thinking was a unique sort of logic came about as a result of him confirming what medications I currently take. In August, he had prescribed two new meds for me, calcitriol and phospha 250, and that was going to add 5 pills per day to my pillbox. Those of you XLH-ers who take those meds know that while the calcitriol is small, the phospha 250 is what my mother would refer to as a “horse pill.” Those 3 phospha pills and 2 calcitriol pills per day simply did not fit in my pillbox. So, I guess I’m vain. When I realized they didn’t fit, the first thing that came to my mind was, “Something’s got to go,” not, “I need a bigger pillbox.” I decided that since my cholesterol pill is doing a great job of lowering my bad cholesterol, then I could probably eliminate the flax seed pill and the fish oil pill, both of which are quite large. I did that, problem solved. Quite honestly, I associate huge pill boxes with old age. I know, I know, that’s really not fair, but what can I say? I’m just not ready for the big pillbox that has four compartments for each day. I can’t bring myself to carry a pillbox that qualifies as “carry-on luggage.” I am vain, just between me and you.

Blue Pill Box

Which leads me to reveal a secret dream that I’ve had for many years. I discussed this with a friend several years ago, when I bought my current pillbox, the one that seems to be shrinking. We felt like people in our generation would appreciate a more whimsical, fun pillbox. We both agreed that a pillbox that is more like a Pez dispenser would be way more cool to carry around and whip out at the restaurant than the boring ones that are currently available. And now that I have pills that are supposed to be taken with meals, the calcitriol and the phospha 250, I think it’s time to work on my invention.

Just remember: You first read about it here!

Pez Pill Boxes

My current vintage collection consists of Woodstock Wednesday, Snoopy Sunday, Tasmanian Tuesday and Fred Friday. I need three more, for Monday, Thursday and Saturday. Suggestions?

Fred Friday pills

Hmm…those doggone phospha pills are a little long. I guess I’ll have to stand them up or cut them in half. Still, though, way cooler than a box.

Copyright S. G. Hunter and Banjogrrldiaries, 2014

Honesty is the best policy.

14 Sep

[NOTE: In my blog post today, I write about losing weight and exercising. I do realize that my personal experience cannot be universally applied to everyone else’s medical situation and physical condition and abilities. I am not being judgmental towards other people who are overweight or can’t exercise due to physical disability. Really, this blog post is all about me–and now that I’ve written and published it, I guess I will have to hold myself accountable to the promise I’ve made myself to lose a few pounds by being more active, as I am able, and eating less. I’m letting you “in” on this pledge I’ve made to myself, hoping that someone “out there” might also be inspired to make a commitment to get healthier, as they are able.]

Today, I am stuck at home. Why? Because I am doing a 24-hour urine collection for my doctor and I don’t want to go anywhere today and take my “hat” and urine collection jug with me in case I need to pee. I know, this is probably too much information for some of my readers. I’ve just recently started on the “standard” treatment for adults with XLH—Calcitriol and Phospha 250 Neutral—and I guess part of that standard course of treatment is doing a 24-hour urine collection to see how my kidneys are affected. We do have a phosphorous wasting disorder, and the kidneys are a big part of making sure most our phosphorous gets wasted as per the instructions on the PHEX gene of the faulty X chromosome. As I have mentioned in a previous post, my body is following those genetic instructions very well; it’s just too bad the instructions are wrong.

So, I’m at home, knitting a baby hat for someone I know who’s going to have a baby in a few weeks, listening to the gentle snores of the dogs and pondering the big things in life like, is it time for lunch yet?

What has led to the pondering of lunch is, ironically, that I started on a diet last week, with the help and wise advice of Professorgrrl, who has a calorie-counting app on her smartphone. (Note to self: ask her how many calories are burned when one blogs?)

Professorgrrl and I had an interesting discussion while on a walk this morning. We were discussing an elderly woman that we know who, though she’s had more than one MRI on her back PLUS back surgery, is determined that her doctor needs to order another MRI for her back, “to see what’s going on.” The woman is 80 years old, doesn’t exercise, sits in her recliner all day and watches TV, but does get up to walk down to the elevator to go to the dining room (she lives in an independent living facility) three times a day to eat. For this woman, there seems to be, in her mind anyway, some therapeutic value to getting an MRI. I don’t dispute that sometimes knowing exactly what your problem is does help you to deal with it better. I asked Professorgrrl if she thought that the doctor would just order the test OR would she say, “Your problem is that you sit in your recliner all day and do nothing but think about yourself. You need to get off your butt and walk around several times a day; you need to socialize with other people; you need to get involved in some activities around there and stop thinking about yourself so much and get a little bit of exercise while you’re at it.” We concluded that there aren’t many doctors who are that brutally honest. Why did we conclude this?

Well, I have the same family doctor as this elderly woman. I just had my yearly physical a couple weeks ago, and my doctor said nothing about my weight gain. In fact, I have seen three different doctors in the last year, plus their nurses, and not one single medical person has said to me, “Banjogrrl, I have noticed that your weight seems to be trending upwards. If you keep gaining, by the time you’re 65, you will be in sorry shape. Have you changed your eating habits? Have you stopped walking every day? Why are you slowly gaining weight? Do you know what this will eventually do to your already arthritic knees and hips? Not to mention your back pain, too?” Nope, not one single comment from a medical professional. In fact, my family doctor looked at my lab work results and said that my cholesterol looked really good and I seemed to be fine, see ya next year.

Now, if you were to look at me, you wouldn’t notice that I’ve gained weight steadily over the years. I have never had a shapely shape that could be lost with weight gain. I’m pretty much shaped like a tree stump—short with no hips, or anything to suggest an “hourglass” shape that American women strive for. I know some of you who know me personally will probably read this and scold me for saying I’m shaped like a tree stump. A stump is NOT a bad thing. Read the children’s book, “The Giving Tree.”

However, the doctors and nurses all have those numbers in front of them and could easily look at the amount I weigh now and say, “You’re gaining weight. Why?”

I am not saying that the responsibility of losing weight is on them, either. I know it’s all my responsibility. I am a bit surprised that the insurance company hasn’t stepped in and said to their customers, “We’re sorry. Because you are over your ideal weight, we are not going to allow you to have knee replacement surgery, blood pressure medication, cholesterol medication, etc. You need to get your act together first, then we’ll review your case.” I hope that day doesn’t come, since the insurance companies control the world enough already.

I do think, though, that some strong encouragement from a medical professional might go a long way. My doctor could have said, “Banjogrrl, have you considered the possible problems in your future if you allow your weight to continue to trend upwards? Can you make a plan to stop that increase?” Maybe she’s being overly compassionate, because she realizes I have the mobility and pain issues that come with XLH. Perhaps she can’t bring herself to use “tough love” on her patients. Maybe she won’t be able to bring herself to say to my elderly friend, “Have you considered the consequences of sitting on your butt all day in your room and doing nothing but watch TV? Change your sedentary, hermit-like lifestyle and after a year of implementing that change, talk to me.”

She probably won’t say something like what my dad’s doctor said to him once, regarding his diabetes. “If you don’t lose weight and change your eating habits, you’re going to die. Are you ready for that?” My dad wasn’t ready, thank goodness. His doctor wasn’t politically correct in his approach, either. But sometimes, do we need a kick in the pants? I think I need one regularly, and if you have XLH, then you know how hard it is to literally or figuratively kick your own self in the pants.

So, I’ve decided to give myself some “tough love” and I plan to try to lose 11.5% of what I weighed last week before I started this adventure. Right now I am being encouraged by Professorgrrl. Oh, and her phone app, too. Here’s a list of fun calorie burning activities, which is important to know, because you can eat those calories in snacks or dessert later:

30 minutes of playing Croquet burns 81 calories.

30 minutes of gardening burns 105 calories.

30 minutes of fishing burns 88 calories. I need to renew my state fishing license.

15 minutes of juggling burns 53 calories. I know how to juggle, but 15 minutes at a time is plenty for me.

30 minutes of Wii bowling burns 60 calories and 30 minutes of REAL bowling burns 70 calories. This, in my opinion, makes the case for staying at home to bowl, because you don’t have to rent smelly ill-fitting shoes and eat high-calorie, over-priced snacks. You should invite someone over, though, because socializing is part of the fun of bowling.

30 minutes of walking with a dog burns 70 calories. I think that 30 minutes of walking a maniacal Jack Russell Terrier burns 100 calories.

30 minutes of playing the guitar while sitting down burns 35 calories.

30 minutes of playing the piano burns 46 calories.

30 minutes of playing a woodwind instrument burns 28 calories. Another good reason to take up the guitar or piano.

Yesterday, I played my hammered dulcimer at a wedding for approximately 1.5 hours. Playing the hammered dulcimer isn’t on the list of instruments in the calorie counting app; however, since it is a percussion instrument, I looked for the amount of calories burned while playing the drums. Thirty minutes of playing the drums burns 98 calories! I practiced many hours this week in preparation for the wedding so I’m pretty sure that earned me some chocolate.

Dulcimer set up for wedding

A pretty location for a wedding and a hammered dulcimer.

Overlooking dulcimer at wedding

We made it through the bride’s processional music, Pachelbel’s Canon in D. At this point in the service, we’re waiting to play the recessional music, “Haste to the Wedding.” The recessional music burns more calories than the processional music, since it’s much faster and in 6/8 time, which is considered “jig” time. Dancing a jig burns many more calories than playing a jig, but hey, you do what you can do.

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

Ice Bucket Challenge

24 Aug

I fear I must go on a mini-rant. I’m not sure if I’m ranting about Facebook or the ALS Ice Bucket Challenge videos that I am seeing daily.

At first, I was able to ignore the videos being posted for the ALS Ice Bucket Challenge. Why? Because people were posting celebrities throwing ice water on their heads and there was no mention in the video titles of why they were doing this. I just figured it was some gimmicky thing someone had come up with because they were celebrities, and not a fund raiser.

Then I saw some young people (under 25) posting videos of themselves stepping up to the challenge and tagging their friends to do the same. So I had to find out what, exactly, the challenge was.

I’m pretty sure the young people who were doing this did it because it was cute and fun, and, of course, to avoid the “penalty” of having to donate $100 to ALS (also known as Lou Gehrig’s Disease) if they didn’t take the “plunge” and dump ice water on their heads.

Let me be very clear: I am NOT against anyone donating money for research into this horrible rare disease. I know several people who have known someone with ALS, so I’m sure it is personal to many people who have had friends or relatives with ALS. I am glad they have raised so much money as a result of this challenge. (It’s in the millions of dollars, now.) I am also NOT against anyone raising awareness about any disease. Hopefully, they will inspire someone to give money or just look around a pay attention to people around them who may be suffering from some rare, or even common, disease or disorder.

However, I’d like for people to know that there are, according the National Organization for Rare Disorders (NORD) between 6,000 and 7,000 rare diseases and disorders that affect nearly 30,000,000 Americans. About 50% of them affect children. Very few of these rare diseases are named after celebrities or sports stars, so you probably have never heard of those nameless thousands of rare diseases that are not associated with a famous adult who developed a rare disease in their adulthood, after they had become famous. I daresay that the millions of children who are born with rare diseases probably won’t have the opportunity to grow up and become famous, and as a result, have their disease named after them.

I would like for people to look around them and pay attention. Do you want to give money to the ALS Association? Then please do. But look around you. There are people with rare and even not so rare disorders and diseases all around you! How about that friend whose parent has Alzheimer’s? How about that neighbor whose child has cerebral palsy? Give some money to the organizations that support them. Better yet, offer to support them in some tangible way. Let them know you’re thinking about them. Take them a meal. There are lots of families who have beloved members that require extra care, because they were born with or have acquired a disease or disorder. I have a friend with a chromosomal blood disorder that is even more rare than XLH, and it has some long complicated name that isn’t a celebrity’s name and doesn’t even have a catchy acronym. No one’s started a fundraiser to raise awareness of her disease or even teach people how to pronounce it. As I mentioned, there are over 30 MILLION people in this country with a rare disease. You likely know one of them. They also need your support.

Sure, if you also want to post a cute selfie of ice water being dumped on your head, then have at it. But can you not find something better to do with your time? Like writing TWO checks, instead of one. One to the ALS Association and the other to some other support organization that goes towards research into a cure or a treatment for people with another disease. And, as always, try to find out what percentage of your donation actually goes the cause you want to support. The higher the percentage, the better.

Of course, I am partial to the XLH Network (www.xlhnetwork.org) for donations. They are trying hard to raise awareness with the medical community about our disease. If you have XLH, then you likely know what it feels like to tell your new doctor or dentist that you have XLH and to hear that doctor or dentist respond, “Huh?”

And now you can tell them, “You know, that bone disease that the famous blogger, Banjogrrl, has.”

Just kidding.

Copyright S.G. Hunter and Banjogrrldiaries, 2014.

Yale Drug Study, Part II

6 Aug

Tonight, I am finishing up the end of a three-month drug study that I participated in at Yale. I wrote about this study back on June 1st, if you’d like to follow the link that I posted then to the specifics of this study for XLH patients. I am grateful that I was physically able to participate. The folks in the research unit of the hospital have been great and very caring. I hope that my participation has contributed to furthering the research that is needed to find a good treatment for people with XLH. There are those whose disability or financial circumstances (taking time off work) might prevent them from being able to participate, so I felt I had some responsibility to volunteer. So, here I am. Sitting in a hospital room, drinking a lot of water, getting up and down a LOT to go the bathroom, while toting an IV pole. I think this is what it must feel like to be my sister, who says she has a small bladder, but without the IV pole. Sorry, sister, if you’re reading this. No wonder you always hated camping when we were growing up, since we had to go to a bathhouse for our bathroom needs!

So, I’ve entertained myself today, in between trips to the bathroom, blood draws, and the taking of vital signs, by taking photos looking out my window, and editing the photos I took yesterday and Monday, before I checked into the hospital.

20140804_161158_1

Looking out the plane window as we arrive. I have both a fear and fascination with flying. Plus, it gives me motion-sickness, so I have to fly under the influence of Dramamine.

 

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We drove through a very old cemetery (established in 1645) yesterday, in nearby Branford, Connecticut.  Life always seems to overcome death.

 

20140805_115752_1

Five Mile Point Lighthouse in New Haven. This old lighthouse is locked, so I did not get to climb this one. It’s still worth going to the park to see it, though. Check out the antique carrousel, too! I couldn’t ride it, of course, for fear of throwing up on it. Nope…can’t do circles. Don’t ever ask me to go to the fair. I am no fun. This is not XLH-related, by the way.

 

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View out my hospital window, looking down.

 

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Another view, looking southward.

 

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Is this a selfie or a footie? I’m not sure.  To all my knitting friends out there, I have some knitting advice. Do not knit while under the influence of Dramamine. My first attempt, which I started on the airplane, was a disaster. I had to start over. This attempt (a baby hat) is going much better.

 

Copyright S.G. Hunter and Banjogrrldiaries, 2014.

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