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.

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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.

 

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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.

Another Inspiration

1 Aug

I have always enjoyed feisty animals. Not mean but feisty. I have a Jack Russell Terrier (and you read about him in my last blog post) and before him, I had another Jack Russell Terrier. That is one feisty breed of dog. Those two dogs have been my inspiration over the years, especially as I get older. I need role models like them, especially in the mornings, when it’s challenging to get up and get going. These dogs have inspired me to keep up my routine of a daily walk with them, even when I don’t feel like it. They’ve been feisty when it comes to our scheduled exercise routine.

Another feisty animal that I enjoy is the Ruby-Throated Hummingbird. I have several that come to the feeders that I have hanging around my house, within a few feet of where I sit to watch them. They are tiny—the average weight of an adult male is 3.4 grams, with the females weighing slightly more (yes, they’re allowed.)  They flap their wings 53 times per second, their preferred method of transportation, and that creates the “humming” sound you hear. According the National Geographic, their legs are extremely short (hey—those of us with XLH can relate to that!) and as a result, they do not walk or hop very well. They grow to be 3 or 4 inches and on a daily basis might eat up to twice their weight in food (now, I’m jealous!) because of their high rate of metabolism. I guess if I flapped my arms 53 times a second, I could eat more, too. As it is, my arms are beginning to flap on their own, but not that fast.

I enjoy watching them and photographing them for several reasons. They are beautiful and fascinating and seem to be unafraid of anyone, including me and my camera. I try to get as close to them as possible. I really enjoy watching them chase each other when trying to guard their favorite feeding spot. A couple weeks ago, I moved two feeders to the backyard, and watched with amazement as they chased off larger birds, like the Tufted Titmouse. This bird can weigh anywhere from 18-26 grams, according to the Cornell Lab of Ornithology. So I have to ask myself, would I chase off another critter that is 6 TIMES my weight?

I don’t think so. And, that’s why they both inspire me and make me laugh. They are tough little birds. I’ve included some of my photos and videos for your enjoyment. If you ever feel too small in the world, which I often do, remember the hummingbird!

Who's following me?

 Who’s following me?

Heavenly Hummer

Female Ruby-Throated Hummingbird

 

Here’s a video of a juvenile male Ruby-Throated Hummingbird that came to one of my feeders:

http://www.youtube.com/watch?v=qJbn4gk9CsQ

This video is of an adult male Ruby-Throated Hummingbird who’s been looking a little scraggly in the last few days:

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

 

 

Copyright S. G. Hunter and Banjogrrldiaries, 2014

Pain Scale

22 Jul

Have you heard of the pain scale? When you report to your doctor that you have pain, he/she will usually ask you this question: “On a scale of 1 to 10, with 10 being the worst pain you’ve ever had, how would you rate your current pain?” If you’re a person with XLH in the U.S.A., you’re probably familiar with the pain scale.

Professorgrrl says that whenever her father went to the doctor about some new pain he was having, and the doc asked him to rate it on a scale of 1-10, he always said 10, so that he’d get the most help available. He believed he wouldn’t get enough help or medication if he only gave it a 5 or a 6.

My understanding of that pain scale is that I am supposed to compare my present pain with the worst pain (a #10) I have ever felt. My grandmother once told me that childbirth was the worst pain she had ever felt. It was so bad, she thought she would die. I asked her why she went on to have three more children after that first time, knowing full well it was going to hurt. “You forget how bad it was, ” she said.

I clearly remember my worst pains. I’ve never given birth, so I guess I’ve had it easy, but my #10’s haven’t been forgettable.

1980’s- I had to have a dye injected under my left kneecap so that the orthopedic doc could get a better idea of what was wrong with my knee. Mercy, that hurt. I probably teared up for that. I’m pretty sure the needle was the diameter of a pencil.

1990’s- I had an abscessed front tooth. I wanted to die. No pain meds helped and one of them made me very sick on top of that. A bad few days. Really bad.

Last week: I had a diagnostic mammogram (or “slammogram” as I like to call them). I had one of these last December too but I think the technician last week had a sadistic streak. The more calcifications and density you have in your breasts (my sister is convinced I’m mummifying) then the more “technique” they apply with those machines. I am not lying–they actually used the phrase “apply more technique.” Lady, you apply makeup; what you did to me last week was to torque down on that gear knob. I get to have another one in six months. Woo hoo.

Yesterday: I picked up the water hose sprayer to go fill up the bird bath. Between my hand and the sprayer was a hornet or wasp or some other evil pollinator. I am shocked at how much that sting hurt! I yelled while applying ice and baking soda. My beagle was afraid of me because of the racket I made, yelling, cursing and stomping my feet. It still hurts! It only feels bruised today, but wow, I am stunned that a creature that tiny could hurt me (a level 10 pain) like that for a full 10 minutes, and then still hurt the next day. Thankfully, it was only 10 minutes of #10 pain, unlike childbirth.

That is my list of level 10 pains on the pain scale, those pains by which all my other pains are measured. Thinking about those #10’s, my other regular daily pains don’t seem so bad today.

How about you? What are your #10’s? Besides childbirth, of course.

 

Sage Bumble Bee
The bumble bee doesn’t seem to be very aggressive. Probably not the perpetrator from yesterday.
Honey Bee
The sweet little honey bee. The first time I ever got stung was by a honey bee. I was about 3 or 4 years old, and picking flowers to give my mother. The bee sting really put a damper on that experience. But for her, I’d pick flowers again.
Invader
A wasp, mooching off the hummingbird feeder. Very high on the suspect list, in my opinion. Grrr…
Copyright S.G. Hunter and Banjogrrldiaries, 2014. All Rights Reserved.

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.

 

Elbows

3 Jul

Fireworks

 

Tomorrow is July 4th in the United States of America. Which, in this moment, makes me think of my elbows. I know. Crazy.

I have recently discovered that one of the many places that the joints of an XLH-er calcifies with age is in the elbows. I had noticed some pain in my elbows, and noticed that they pop and crack a lot and that they didn’t quite hang straight.

At the Yale study, when I was examined by the doctor, he said this is one of the typical places that tend to get affected by our disorder. He had me extend my arms, and noted that they didn’t completely straighten out.

When I returned home, I also took note that I also could not completely bend them, either. In fact, I discovered that I could not touch my shoulders with my hands (like in the children’s song, “Head and shoulders, knees and toes, knees and toes.”) For a couple of weeks, I asked my friends, who are my age and older, if they could touch their shoulders. They could. I even asked my parents, who are in their upper 70’s, if they could touch their shoulders. They could. So, I realized this isn’t just an “old person thing.”

My physical therapist friend told me to keep trying. Stretch them, extend them, bend them, and keep moving them and try to get them to do what they’re supposed to do. So, I’ve been practicing. Stretching, moving, bending. I have seen some improvement! I can now touch my right thumb to my right shoulder and I can touch my left thumbnail to my left shoulder. I’ve been practicing this every day. That may be the most I’ll ever be able to do, but, I certainly don’t want to lose more ground.

And, tomorrow, on July 4th, I will put my right elbow to good use. I am one of those old-fashioned people who celebrate July 4th in an old-fashioned way. I will go to a baseball game in my town (minor league), stand up for the National Anthem and place my right hand (arm bent at the elbow) over my heart and listen to the anthem being sung. I still remember doing that as a child in school, and the “habit” has never left me. I hope I never lose the ability to do that.

Flag in the mirror

I live in an imperfect country, with many problems but we also have a lot of good things going for us. I have the freedom to sit in my house and blog and write about whatever I want to. I complain about the health care system sometimes, but it is, at least, available to me. I am able to participate in a drug research study at Yale University because the National Institute of Health, which is a government organization, is supportive of Yale doing this study.

We are not perfect here in the U.S.A. Relative to the rest of the world, we’re some of the newer kids on the block. And when I look back to my youth, I see that I made a lot of mistakes. Hopefully, I have learned from them. I hope that the U.S.A. keeps trying to learn from her mistakes.

And, I hope that we keep doing the good things that we’re trying to do, too. In light of that hope, tomorrow night I will place my arthritic right hand (bent at the sore, stiff elbow) over my heart and listen to the singer sing the National Anthem. I will get a little teary, like I usually do, count my many blessings, which are many, and wait for the next explosion of words to come out of the sound system.

“PLAY BALL!”

Play ball!

 

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

Old Baldy

18 Jun

Bald Head Island Port

The Port at Bald Head Island

If you have followed my blog, then you know I have a “thing” for lighthouses. When my orthopedic surgeon told me I still have some time left on my old, worn-out, arthritic knees, I decided that I would make my steps count. Climbing lighthouse steps, whenever possible, is one of my ways of making by steps count.

Approaching Old Baldy

Approaching Old Baldy. Yes, the top is off-centered.

Up the shaft

Looking up Old Baldy, from the inside

A couple weeks ago, I almost “conquered” another set of lighthouse steps. Old Baldy, on Bald Head Island, NC, has 108 steps. I climbed 105. The last three I didn’t climb because I was either, #1, chicken, or #2, realized I wouldn’t have anything to hold on to when it came time to turn around and descend the steps therefore making it unwise to “try it and see what happens.” I’m not saying which. I will say, though, that every time I thought about those last three steps and imagined trying to climb and descend them, I got a queasy feeling in my stomach along with a heart flutter. Even now, thinking about it makes me feel woozy. In my imaginings, the ones that made me feel queasy and fluttery, there was nothing to grab to help me climb those last three steps. Professorgrrl was at the top and could have helped me get to the very top, I guess, but I’m not sure she could help me descend, unless she went first and broke my fall. And that would be very unpleasant for both of us. When I got home, and looked at my photographs from the trip, I discovered something very odd. There was a handrail at the top! I have no memory whatsoever of that handrail. My camera sure did remember it.

Three steps short

Looking up into Old Baldy

Have you ever been so fearful, that you’ve been blinded by your fear? My fear of heights that day completely blinded me, I guess. I later stared at that photograph and thought, “Where did that handrail come from?” At the time, all I could imagine was falling when it came time to turn around and descend, due to a misstep. Perhaps I could have climbed the last three steps. I don’t know.

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Looking down from the 105th step

I know that I have long lived with a fear that I would end up in a wheelchair long before everyone else does. Maybe being a child in braces does that to a person. Maybe getting old with a bone disease like XLH does that to a person. Maybe just getting old does that to a person. I am learning to not let fear blind me to the moment that I live in. And in this moment, I can walk. A little crooked sometimes, and sometimes with a hiking stick, and sometimes holding on to Professorgrrl’s arm, but I can walk. I often say that if I wake up and my feet hit the floor before my butt does, then it’s going to be a good day. So, I walk. I climb (lighthouse stairs only). Sometimes, when no one is looking, I dance—a crooked dance, but a dance, nevertheless.

So, what are you going to do with this moment?

Peeking into the top of Old Baldy

Peeking into the top of Old Baldy

Copyright 2014, Banjogrrldiaries and S.G. Hunter

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