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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!

img_0106

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

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

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!

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

My Inspiration

21 Jul

Those of you who read my blog who have XLH know that our bones “act” older than we really are. Sometimes I feel like I’m aging at warp speed–not all the time, but sometimes. Of course, we’re all getting older if we’re fortunate enough to still be breathing. One of my dogs, Deacon the Jack Russell Terrier, has been a true inspiration for me in the last year. He’s an old guy–almost 14 years old by my estimation–and he inspires me every day. He is the most determined creature I know when it comes to carrying on with the daily routine of living. He makes sure he gets his walk and his food at the time he is supposed to get them. I can set my clock by him. If I try to stray outside the routine, he makes sure to get me back on track.

He is a rescue dog; his “owners” abandoned him in 2002 and he managed to “find” me. He was heartworm-positive and needed two rounds of treatment to recover. He also smelled so bad when I first took him in, that he had to sleep outside in a crate on the deck for the first night or two until whatever he had been eating off the streets had made its way out of his system. A bath could not rid him of his foul odor. I had another Jack Russell Terrier at the time, Pogo, who ruled the house (and me) and Deacon’s personality never really came out until Pogo died 2009. I discovered that Deacon had his own distinct personality and is very smart. Prior to that, I had my doubts. He lived in Pogo’s shadow. Come to think of it, I also lived in Pogo’s shadow!

Within the last year, I have been inspired by Deacon and how he deals with aging. It’s not always a graceful aging process with him–sometimes, he starts up the back steps and missteps and rolls back down–but he gets up, determined to make it back up. On those days when he’s moving slower than usual, he will ask for help. So, here’s my series of photos I have taken within the last year that I’ll call “Everything I ever learned about aging, I learned from Deacon.”

#1 Be open to new adventures, even if it involves riding in the back seat of a car.

Deacon riding in the car

 

 

#2 If possible, take time to sit outside in the sunshine.

Deacon

 

#3 Observe the world around you. God’s creation can still amaze us, even when we’re older. Maybe we can’t see it or smell it as well as we used to, but we can still be amazed. And, of course, be on the lookout for squirrels.

Deacon on the alert

 

#4 Some days, you’re just going to feel like crap. Be extra good to yourself on those days, maybe even throw on your party beads and wrap yourself up in a cheerful blanket.

Deacon in his finest

 

#5 Try to make new friends, even if they’re very different from you. It might take some time, and you may want to chase them away at first, but you might end up liking them more than you thought you would!

Deacon meets the neighbor's cat

 

#6 Accept offers of assistance. (This one is really hard for me!) Sometimes, we just need a little help getting up those steps, or reaching things on the top shelf at the grocery store or picking up something we’ve dropped. Let someone help you. It might make their day!

Deacon and his assistant

 

 

#7 Take naps. Aging can be tiring. Also, there is nothing wrong with having a favorite blanket, if that helps you to take a good nap.

Deacon and his blanket

 

 

#8 Relax. Try to get rid of the things in life that cause you tension. Meditate or pray. Take time to just be still and perhaps get a new perspective.

Deacon rests

 

 

I love this little guy. I hope he will continue to mentor me through the aging process for a little while longer!

 

Copyright S.G. Hunter and Banjogrrldiaries, 2014. All Rights Reserved.

 

If a Tree Falls

5 Aug

“If a tree falls in a forest and no one is around to hear it, does it make a sound?”

Apparently this philosophical question has been batted around for decades, even hundreds of years. I have always thought it to be about the dumbest and most egocentric question I have ever heard. AS IF sound is completely dependent upon some human to hear it. AS IF nothing exists unless WE say it does. That’s an incredibly arrogant point of view. Just ask my dog, who hears the rumble of thunder long before I do. Sound is not dependent upon me.

However, speaking of trees, I have had some interesting trees in my camera viewfinder this summer. This tree pictured below houses some red-headed woodpeckers. Earlier in the spring when I saw it, though the tree appeared to be quite dead, it stood straight and tall. When I saw it again this summer, it looked as if it had been struck by lightning and had cracked and would have fallen to the ground, had it not been caught by a neighboring pine tree. It still houses the woodpeckers, though I’m sure they had to rearrange their nest now that it has a major case of lean-itis.

Woodpecker peering into tree hole

Leaning tree

Woodpecker peering into tree hole

Close-up of Red-headed woodpecker in the leaning tree

The other tree I have found this summer was standing quite tall and majestic in a winery vineyard. It appears to be dead, too. It strikes quite a pose as it stands completely alone in the vineyard, with no other trees nearby. You can see that there’s a bird perched in it, too.

Like a tree planted by the grape vines

When this vineyard tree falls one day, and I’m sure it will, I imagine that the sound will be something like a loud “thud” and it might even shake the ground when it hits, since there will be nothing to catch its fall. When the woodpecker tree fell sometime this late spring or early summer, I imagine that the sound it made was something like a “crack” followed by a slow “whoosh” as it fell over to rest in the arms of the pine tree nearby.

Why the difference? A scientist would have a different answer than the one I’m going to suggest. So would a sound technician. “Blah, blah, blah” is the sound I imagine coming out of their mouths.

The difference, and I’m sure you’ve guessed it already, is the woodpecker tree is surrounded by a community of other trees who caught it before it hit the ground. The landing was quite soft. Sadly, the lone vineyard tree has no other community of trees to provide a soft landing. It will fall hard.

As I get older, I have to work a little harder, I think, to make sure that I surround myself with a community of friends, family, and companions in my life’s journey. It’s very easy for me to sit at home and isolate myself in some way. At the end of the work day, I am tired, and so it takes a little extra effort to go out with friends or make plans with those I love. I have watched some older people isolate themselves, too. It takes energy to be with other people, let’s face it. Even extroverts get tired, or so I hear.

I think that some of my fellow XLH-ers, too, probably get tired from the amount of physical energy it takes to actually get out, if they are able. This probably applies to others who are becoming less-abled either due to aging or due to medical problems. One of my relatives, whom I love very much, is finally getting some help narrowing down her diagnosis of an auto-immune disease. She’s ready for whatever help she can get so that she can feel better. Right now, though, reaching out to those around her takes a lot of energy, but she is managing to do that. I think she understands the importance of community and I hope she’ll continue to reach out to me and others for support.

We’re all going to fall someday, in some way. We may fall emotionally, spiritually, morally, or mentally. We may even fall physically. (I usually have about one big “splat” per year, and thank goodness, I’ve already had mine this year so the rest of the year is looking pretty good.) I ask myself and invite you to ask yourself, “Have I surrounded myself with a community of others who might catch me or at least let me lean on them awhile?” I hope that I am doing that. I hope you are doing that. We need each other. Maybe physically getting out is impossible for you—I know that it is for some. Have you tried social media, like Facebook? Can you join an online support group? We XLH-ers have a wonderful group, found at xlhnetwork.org, and I know that many other support groups exist for people who need support for one thing or another. I have rarely commented in my group, but just reading the comments and emails of others makes me feel like I’m part of a community that cares and understands my particular medical condition. These days, there are support groups for all kinds of people, so it’s a lot easier to find folks with whom to connect. I even know some people who are not a part of a faith community that meets in a building somewhere because they’re disenchanted and disappointed with organized religion and yet they still meet regularly with like-minded friends who share their beliefs and desires to make the world a better place. Often we can just take a look around and find someone on whom we can lean.

Better yet, we can be that person who is close by, waiting to catch someone when they fall.

Copyright Banjogrrldiaries and S.G. Hunter, 2013-2018

I Can Dance!

9 Jun

I can dance! Okay, not really. I mean, I used to be able to cut a few moves when I was younger, since I am a musician, after all, but with this whole aging thing, plus the addition of having XLH, my moves are not very cool looking. I have very good rhythm from the waist up, but my lower half can’t bust any moves, and if I try, well, it’s not pretty. It leans more towards being comical. It’s a shame, too, since I do have good rhythm, and all.

I have recently figured out a way around that. I play in a music group and we now have a percussionist on occasion and when we play in retirement homes, we’ve been bringing out the handmade limberjack cat that I’ve had for probably 15 years or so. I became concerned that the cat was a little too special to cart around to these gigs, and decided that what we really needed was a limberjack dog. If you don’t know what a limberjack is, check out my video of Corky, the Limberjack Dog that I made.

http://www.youtube.com/watch?v=_zpa7KRIcRQ

Being somewhat obsessive in nature, I decided that I just couldn’t stop with making only one limberjack. So, I felt like I needed to make a Limberjack Chicken, to dance to “Cluck Old Hen.” Now, this chicken can REALLY bust a few moves! She throws in a little tap dancing, too. I admire her fancy footwork.

http://www.youtube.com/watch?v=U8A8plyxSBI

I have a confession to make, too. I have watched these videos several times. I have always loved watching people dance; even ballet thrills me. Maybe there’s a touch of envy, too, when I watch others dance, but really, I am just fascinated by the strength and agility that it takes to be a good dancer. I even like watching ballet. I think good dancing is really fun to watch. Watching my limberjacks dance on the videos gives me a similar feeling, with a little comedy thrown in, because I KNOW there’s no way any of God’s creatures could do what those crazy limberjack dolls do.

When I posted my limberjack dog and my limberjack chicken videos, I had a few friends who enjoyed them so much, they wanted me to make one for them. Now, I can tell you that this is not a business I want to start. You can buy a homemade limberjack for $30-$40 online, plus shipping, and I don’t know how in the world people can charge so LITTLE for making those things. Maybe I’m just slow in the shop—it did take a little longer for me, of course, since I had to draw my own designs, but still—it’s not a money-making operation!

So, here’s what I’m doing, instead. I am offering my detailed woodworking plans (with the drawing of the dog and the chicken) along with photographs so that you can make your own limberjack dog or chicken. Maybe you can’t dance due to physical challenges, but your hands still work, so you can give these a try. If you know a woodworker (they don’t have to be very advanced—I’m not!) then ask them to make one for you. Perhaps you know a physical therapist or someone who works in music therapy with kids or adults who can use one of these, too. I’m not charging for my plans but I am making a request: if you’re a woodworker, make two of them—one to keep and one to give to someone who might not otherwise be able to dance or who works with kids or adults with physical disabilities. I showed the videos to my physical therapist friend and she asked me to come do a “show” for some of the physically challenged kids that she works with. Kids love these. As a matter of fact, adults love these. Now, maybe you don’t know of someone that you can give one of these to. So, if you want my woodworking plans, then please consider making a minimum $5 donation (that’s about the cost of a set of easy woodworking plans these days) to XLH Network, which can be found via the internet at www.xlhnetwork.org. Many XLH-er’s have either never been able to dance or perhaps, like me, they know their dancing days are over, at least from the waist down. Your contribution is tax-deductible.

How to request the plans: I am hesitant to post my email address on a blog, due to the prevalence of spammers, so here’s my idea. You can send me your email address in a comment to this blog. I will copy the email address and send you the plans (in a Word document for the instructions and a pdf. file of the drawings) but will not “approve” your comment (if it has your email address in it) to be published in my blog. If you want to make a comment to my post, like, “Cool! Love the chicken!” then you can send that comment separately from your request with the email. The nice comment will be “approved” and shown on the blog, but I’m not going to let your email address be shown. Those spammers…they are annoying, aren’t they???

Just so you know—I am now working on a cow and a rooster. The music is still playing so why stop with two dancing limberjacks?

People first

14 Jan

ImageThe first week of January, someone told me that another hammered dulcimer player had moved to town. When I heard this news, I think I felt like some John Wayne-like cowboy– “This town ain’t big enough for the two of us. There’s only one paying St. Paddy’s Day gig in this town, and I don’t aim to let you have it…uh, yep.” Okay, that’s an exaggeration. Actually, what I realized was that I have gotten very lazy about learning new music. If you were to pull out an old Baptist hymnal, and name any familiar hymn from it, I could probably sit down and within a few minutes, work out an arrangement of that song on my hammered dulcimer and play it for you, even improvise a little bit too. When it comes to playing familiar tunes by ear, it is very easy for me to do. However, when it comes to sitting down and learning an unfamiliar tune written out in standard notation, it takes me much longer and my patience wears thin. Also, since the hammered dulcimer is an instrument that you have to play while looking at your hands and not a piece of music, then I feel like a bobble-head doll when attempting to learn written music. Look up at the music, look down at the hammered dulcimer to find the notes, look back up to the music, back down at the hammered dulcimer. It can be dizzying.

There has been one particular piece of music that I have wanted to learn for a long time, but I haven’t because I knew that I would have to sit down and WORK on it by reading and memorizing the music note for note. I have heard this piece several times over the years and every time I have heard it I have thought, “What IS that song? It’s so beautiful.” And every time I would check my CD to find the name of the song, I would see that it’s “Carolan’s Concerto.” The song is, to me, very beautiful, but not very memorable. Or maybe I should say it’s not very memorize-able. I have tried listening to it over and over before, to try and memorize the tune but it just did not stick in my head. Not like a Baptist hymn, anyway. So, I never bothered to attempt to learn it by the notes on the page. I just assumed that I would never be able to learn it because it didn’t make very much musical sense, in the same way that a song with words might.

“Carolan’s Concerto” is one of many songs written by Turlough O’Carolan in the late 1600’s and early 1700’s. So, now I’m going to take a detour here and tell you about him and something that does relate to the purpose of this blog. Several places that I have found with descriptions of Turlough O’Carolan, or Carolan, as he and his friends referred to him, describe him as a blind, Irish harpist. The noticeable thing about these descriptions is that he is labeled first as “blind.”  Actually, the most memorable thing about Carolan was that he was an outstanding and prolific composer. He was a better composer than a harpist, apparently. But, some of these descriptions that I have read put “blind” first.

There has been a movement for at least the last two decades in the world of disabilities to move away from adjective-first language (i.e., disabled person, handicapped person, blind person, deaf person, autistic person, learning-disabled person, etc.) and move toward people-first language (person with disabilities, person with visual or hearing impairment, person with autism, etc.) Apparently, this shift to people-first language has been controversial in some communities, because for some of these communities, what others may call their “disability” is for them a source of culture and pride (for example, in the deaf and visually-impaired communities.) However, the shift has been welcomed in some other communities, for example, those people who have mobility-related disabilities. Not everyone wants to be defined, for example, by what they cannot do. I can understand that. I don’t want to be defined as that “short, bowlegged limping woman.” However, if I were a criminal, that description would be very handy to the police who might be looking for me. I mean, after all, that is the first thing you might notice about me if you saw me out on the street. I guess the more polite thing to say about me if you were describing me would be “the woman with bowlegs, a limp and short stature,” to use people-first language. Hmm…actually, that’s not so great either, I suppose. If you see me out on the street, just ask me my name and strike up a conversation. Then you can describe me as “that woman who is nice and whose name I can’t remember.”

Anyway, there has been a lot written on people-first language. Just Google that phrase and you’ll find many articles. The ones that I read were all very interesting. I understand the reasoning behind it all. People should be people first and their “otherness” should be secondary to the obvious fact that they’re human beings created in the image of God first. I also understand that there are some communities whose “otherness” defines who they are as people. I had a good friend many years ago who was deaf and was thrilled to invite me into her world and her culture of deafness and even more thrilled when I asked her to tutor me in her language. Her identity as a deaf person was very important to her. And while I do have an identity as a person with XLH, it is certainly not the defining thing about me, and it probably isn’t for many folks in that particular community. We are people with many talents and gifts and many characteristics. Yes, we have all those physical traits that come with the territory of having XLH, and it has probably influenced who we’ve become as far as personality is concerned (compassionate comes to mind) but who we are certainly is not limited to our medical diagnosis. That goes for all people, too. We are not solely defined by our professions, our race, gender, age, etc. We do love categories in the U.S.A., but hopefully each of us is way more multi-faceted than some box we check on a survey or census form.

So, back to the hammered dulcimer and Carolan’s Concerto. I found an arrangement of the song that I like, started learning it and within three days, I was playing the song. I discovered something new about myself in the process. The song turned out, for me, to be very memorize-able as long as I didn’t just limit myself to learning it solely by ear. I realized that there was a kind of three-legged stool necessary for me to learn this song, each leg being equally important. In addition to listening, I had to read the written music and also pay extra close attention to the visual patterns of the piece as I played it on the dulcimer. Now I am working on getting the piece up to speed. I needed to take a multi-faceted approach to learn this song, rather than limit myself to trying to learn it solely by ear. I found it sort of ironic that I really had to rely so heavily on the visual aspects of learning it on my instrument rather than my usual aural approach, when it was a song written by a composer who was blind. I’m rather pleased to discover that I am not nearly as impatient as I had judged myself, either. So, now I’m thinking I need to learn one song each month this way. I need to not be so lazy, and push myself to learn something that may require more brain power (and discipline) than normal. I guess I had sort of subconsciously self-labeled myself as music-reading challenged or rather, a person with music-reading challenges. Thank you, Turlough O’Carolan for a beautiful song that is worth the extra work to learn it. Now, I will be ready for that St. Paddy’s day gig. Uh, yep.

Copyright 2013-2018, S.G. Hunter and Banjogrrldiaries