Tag Archives: health

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.

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!