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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!


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

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


More of the same

4 Sep

Where have I been? I see that I haven’t blogged in a month. A month! August is one of my busiest months with my work, so I’ve mostly been working, coming home and putting on the heating pads.

I’ve also been knitting. As I mentioned in my post on August 2nd, a book that I co-authored is now published and available. We had some friends who were very supportive during this long writing process. They encouraged us to keep writing and to publish it, not just in the e-reader format but also in paperback so that people who still love the feel of a “real” book would read it. They also enjoyed imagining who would play the characters in a movie of our book! We all agreed that Meryl Streep should be in there somehow so that it would be a blockbuster. Ha! What wonderful friends we have to encourage us to press on.

These same friends also have been supportive and loving with regards to my XLH. I cannot ask for better friends and I hope every XLH-er has the kind of friends that these folks are. I knitted bookmarks for them simply because the process of knitting makes me think about and be thankful for the person for whom I am knitting. I am very grateful as I ponder the love that I have in my life.


For you knitters, this is a drop stitch scarf pattern that I adapted to make the bookmark. I used size 2 double pointed needles and sock yarn. Crochet yarn also works well. If you want your bookmark to be stiff, try some starch. has many bookmark patterns but this pattern that I used is simple and can be done while watching TV, but probably not while reading.

As for current news, I’m due for another 24-hour urine collection followed up by blood work. I’ve had a couple of medicine changes this year. I’m dreading it. The last time, it took three needle sticks (2 trips) for the phlebotomist to get it right. And the doctor didn’t get all the test results faxed to him, either. Sometimes I wonder how people, especially elderly people, deal with all the craziness in the medical industry. I sat with Professorgrrl’s mother in the ER one night last week and marveled, shaking my head, that Professorgrrl had to convince them that her mother did NOT need another chest x-ray, since the doctor’s office had just done a chest x-ray one hour prior to arriving at the hospital.

All of you who deal with chronic health issues probably have occasional dread of a medical visit, so I’m sure I’m not alone. You may dread going to the doctor even if you don’t have a chronic issue. It’s sort of like taking your dog to the vet–you know he/she will come back with fleas. I half expect to come back from any doctor’s visit with a cold or virus (but not fleas, thank goodness!) But, I try to remember to be grateful that medical care in this country, even with it’s craziness, is better than the availability of medical care in many other countries.

So that’s what’s going on with me. How about you, blog-reading friends? I hear from some of you occasionally and it always lifts me up to hear from you, especially the XLH-er’s. I think of you often and hope you’re hanging in there!

Copyright 2015, S.G. Hunter

Happy Thanksgiving!

21 Nov

I’ve been thinking a lot about birds this week. I don’t think it’s tomorrow’s turkey-fest that has inspired me, either.

I live in an urban neighborhood. Even with all the traffic, the houses, the noise, the pollution, the cats, it’s quite a bird sanctuary. In the 14 years that I have lived in this neighborhood, I have seen crows, woodpeckers, hawks, finches, canaries, cardinals, blue jays, flickers, mockingbirds, doves, chickadees, wrens, owls, and, of course, the many different varieties of sparrows. There’s even a blue heron that hangs out at the creek in our park sometimes. I have always been amazed at the number of birds who are city-dwellers like me. City living has its challenges for our feathered friends, especially with the number of cats around here, but it also has many benefits. Many folks keep birdfeeders stocked up to encourage these many varieties of beautiful birds to stop by for food. I have quite a collection of  bird feathers that I have found on my walks over the years. If you remember my first blog post, then you already know that I like feathers and why I like them. I prefer to see them on the birds, of course, but hey, occasionally my hair falls out, too.

Found Feathers on a Drum

When I arrive home from work each day, I pull my car into the driveway which is next to a large wandering wild rose bush that is next to the front porch. Almost everyday, there is a flock of several varieties of sparrows hanging out in that tangled mess of a bush, chattering away, hopping around, doing the bird thing. They seem to be a happy bunch. Sometimes in the summer, they are wallowing in the dirt of the garden on the other side of the driveway, taking a dirt bath, flying from the garden, to and from the rose bush, which is their safe haven, I guess. I like to sit in my car and watch them sometimes. On Monday, when I pulled into the driveway, there was a beautiful hawk standing by the rose bush. I’ve seen a hawk in the front yard and on the porch before. I always assumed she was catching mice, for which I have been very grateful, since that cat next door is a lazy slacker, not doing the job she was meant to do on this earth.

But Monday, the beautiful hawk was obliterating a sparrow (or maybe more than one sparrow, given the number of feathers remaining) by the rose bush. The hawk was undeterred by my arrival, too. I didn’t notice what she was doing at first. Then, when I saw the pile of feathers all around her, I watched in both horror and fascination as she devoured her lunch. Many thoughts came to my mind including, “Today’s a really bad day to be a sparrow.”

Then I thought of a song that I heard many times growing up. “His Eye is On the Sparrow.” The song says, referring to God, “His eye is on the sparrow so I know He [God] watches me.”

One needs to be really careful before one uses nature as a metaphor to illustrate the presence of God, because the second thought I had was, “God wasn’t watching THAT sparrow today.”

And then, my mind rambling on, I thought of a friend of mine who is having a rough time right now with family illness and job changes. She might even feel like God is nowhere around and the hawks have gotten to her as a result of God’s absence. I know I certainly would if I were in her shoes.

So, that’s where we, those who love her and care about her step in. I really believe we are to be the presence of God in other people’s lives, especially during those times when they feel completely abandoned by God. I certainly am not God, and can do nothing to change her circumstances right now, but I can be with her, listen to her, think about her, pray for her, and support her in the best way I know how (which usually means going out to a nearby Mexican restaurant for dinner.) I can watch out for her, keep my eye on her. I am pretty sure she knows that she is loved by her friends, and that we’re paying attention and watching out for her.

That’s a lot of what I have to be thankful for this year. Friends. I have some really great ones. I hope I can be a really good friend, too. I also have some new friends, which makes me happy and reassures me that I have not become a sour-puss as I have gotten older. I worry about that, because I’ve seen it happen!

And I am really grateful for my XLH “friends” who are out there. I have never met another XLH-er in person. (Since it occurs in 1 in 20,000 people, I guess I shouldn’t be too surprised by that.) But thanks to the internet, I have “met” some people through this blog and through the XLH Network that share this odd condition with me, and it makes me feel like I have found my “flock” of fellow birds out there. They have been very supportive the past several years through their conversations on the network, and they probably don’t even realize it, since I have mostly just read the conversations rather than participated. The one or two times I asked for some advice, though, many willingly jumped in to offer their wisdom and concern.

So, this year, I raise a glass of cider to my flocks of friends, of many varieties, for whom I am very grateful! Happy Thanksgiving!

Copyright S.G. Hunter and Banjogrrldiaries, 2012-2017