Archive | August, 2014

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:

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

 

 

Copyright S. G. Hunter and Banjogrrldiaries, 2014