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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.

 

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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.

Happy New Year 2017

6 Jan

Hello to my subscribers and new readers of my blog! Happy New Year! I am snowed in right now, (and in the south that means there has been a prediction of snow, but not necessarily actual snow), so I thought I’d take a few minutes to check in with all y’all, especially my fellow XLH’ers and wish you all the best in 2017.

It’s been several months since I’ve written a post and I’ll give you an update. Last year, I was accepted into the adult drug trial for KRN-23. For those of you who aren’t familiar with the trial, it is a drug trial to study the effectiveness of the drug KRN-23 on children and adults with X-linked hypophosphatemia. I am in the third phase of the trials, which is for adults. During the first six months, I did not know if I was receiving the actual drug or a placebo…top secret! Only the pharmacist knew and whoever studied my lab results whenever my blood was drawn, which was (and is) quite a lot! During the second six months of the study, I began receiving the actual drug FOR SURE.

I can say this for certain, too…my broken foot, actually feet, are feeling much better. Oh sure, there are days when I stand too much and my feet hurt at the end of the day, but all in all, that is where I have felt the biggest difference. (I knew my left foot had a fracture, but I didn’t know about the other one until I was told by the study coordinator that the doctors were closely following both feet due to fractures. I thought my right foot just hurt a lot. Go figure.) I’ve also had an increase in energy. That’s been a good thing.

I’m very excited about the promising results for children from this drug, which is an injection, by the way. I sort of doubt that there are many XLH’ers who are afraid of needles, since we often get stuck, poked and prodded  from early on if we were “fortunate” enough to be diagnosed as children. I may dread the needles, depending on who’s getting ready to stick me, but I’m not afraid. Not to brag, but I do have great veins that are easy to find and stick a needle into.

The only side effect I seem to have experienced is restless legs. And what an aggravation it is! The study doctor, seeing that I was borderline anemic, suggested that I take an iron pill daily, since anemia can also cause restless legs. I have faithfully done that and my restless leg “syndrome” has not abated. In fact, I’ve decided that the day after I have my monthly injection, I may as well take the day off from work because it will be a sleepless night that first night. I feel like I could do kickboxing if I were younger, my legs are so restless.

And yes, I’ve tried the “Ivory soap in the bed” trick that some people swear by for restless leg syndrome, and it has not worked. I will say, though, when I tried it, my feet and legs smelled very nice in the mornings.

I’m crossing my fingers that this drug will get approved and will become available for XLH’ers soon. I’m worried about insurance, of course. Even though my former XLH treatment (a combination of calcitriol and phosphorous) was the ONLY valid treatment prior to this drug, my insurance refused to cover the calcitriol. So, who knows what insurance companies will say about this new treatment, which will, no doubt, be expensive. And who knows what will happen to those people who, perhaps for the first time, were able to get health insurance for their pre-existing condition due to the changes in the insurance laws. That all might change, too. There are some promising and also scary things on the horizon in 2017. I’m crossing my fingers. And praying especially for my “tribe,” i.e., other XLH’ers.

I have made no resolutions for this year. I can’t seem to follow through with those. But I do plan to continue doing the things I enjoy doing, like playing music and working and one of my newer hobbies, rescuing cast iron cookware from thrift shops and restoring them to usable condition, while extolling the virtues of Teflon-free cooking. I’ve baked about 7 Bundt cakes in the last two months in my restored cast iron Bundt pan and I might even bake one while I’m “snowed in” this weekend. Feel free to send me your favorite Bundt cake recipes. Which I will look at…if I don’t lose internet. And electricity.

Good thing I still have some leftover cake from the last one I baked, just in case!

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Copyright 2017, S. G. Hunter and Banjogrlldiaries

Happy belated 25th birthday, ADA!

1 Aug

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Last Sunday, July 26, 2015, was the 25th birthday of the Americans with Disabilities Act. President George H. W. Bush signed this law into effect on July 26th, 1990 as a civil rights bill for Americans with disabilities. The law is many pages long, but if you’d like to read about it, go to ada.gov.

Of course, passing laws does not necessarily make people better citizens. I still see people break the speed limit and run through stop signs on a daily basis. The ADA, though, has made people more aware of folks who have both physical and mental disabilities. Thank goodness for that! Physically disabled people now have better and easier access to public places. Congress listed in their “findings” several things which inspired them to create this law. For example, they found that:  discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services.

The bill was/is an attempt to eliminate these kinds of discrimination, among other things. You can legislate some things, but you cannot legislate kindness. I know someone, for example, who had to threaten to stop taking her mother to a particular beauty salon because of the lack of kindness showed to her mother when she would roll in on her walker to the salon. The beauty salon conformed to the ADA standards by having a nice ramp up to the back door, with adequate parking for those with a handicap sign. Unfortunately, the hair stylists there like to gather out by the back door to smoke and eat their lunches, and were not very accommodating as she tried to get through the heavy door, roll through the tiny break room and into the salon area. One time the way was blocked by several boxes of hair products in the hallway, making it too narrow to pass through with a walker. My friend felt that the best approach to handle this was not to “call the authorities” and report this, using the “ADA” word. Instead, she told her mother’s hair stylist who was furious and as far as I know, this has not been a problem since then.  But you still can’t legislate kindness and manners. Somebody’s mama and/or daddy has to teach their children some manners.

I want to focus on the “recreation” part of this finding (quoted above) by Congress. In December 2012, I wrote to my neighborhood association’s president and asked him if they (the board) could approach our city about doing some sidewalk repairs. Oh yes, he replied, the board had discussed this and had plans to work on this and would remind the person who was in charge of this. I never heard another word, but I did continue to wonder if anything would come of it.

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There are several places in the neighborhood where tree roots in the medians have lifted up the sidewalk sections so high that a wheelchair or baby stroller would not go over it safely. If you were not paying attention, or had limited eyesight or it was at night, it would be very easy to trip over these sections. They’re unsafe.

When I was reminded this week that the ADA was celebrating its 25th birthday, I decided I would skip the middleman (the neighborhood association) and contact the city myself. Professorgrrl found that contact person for me online. (Thanks, Professorgrrl!)

I wrote the man in charge of city sidewalks, not expecting an answer any time soon. Oh me of little faith! He wrote back less than 12 hours later and asked me to send him the addresses of those places where the sidewalks are dangerous. A couple days later, I sent him a list of 8 places. And yesterday, less than two weeks later, he had been out and marked the places with cones and had the crews pull up the sidewalk sections for their “tree man” to take a look and see if anything can be done with those roots that are pushing up the sidewalks. How’s that for progress? Skip the middleman, I say.

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Now, I will admit, a case could be made that my asking for these sidewalks to be repaired was a bit self-serving. There is certainly some truth in that. In 2012, though, when I initially wrote the neighborhood board president, it was because an able-bodied neighbor tripped over an uneven sidewalk section and became temporarily NOT able-bodied. And, when I wrote the board in 2012, I had no idea that almost three years later, I would be walking “nordic style” due to a fractured foot. Because of my own experiences, I felt an even more urgent need to seek some help from the city. As they say, “there but by the grace of God, go I.” It can happen to anybody. One day you’re walking, the next day you’re not. Or in my case, one day you’re waddling, the next day, you’re waddling more. In an instant, someone’s ability can change. I am lucky, in that I’ve always known deep inside of my potential for disability, that would come over a period of time. For my neighbor who tripped on a sidewalk, it was an instant. For my mother, who fell three months ago and popped her artificial hip out of joint, it was an instant. A painful instant. She is still recovering. I don’t wish this on anyone of my neighbors, even the ones who irritate me! (And, incidentally, my mother tripped over an uneven sidewalk many years ago and broke her knee. She was much younger and more able-bodied then, but accidents do happen, even to the young and able-bodied.)

All this has reminded me. Sometimes, you only have to ask. And you might get lucky and receive!

Copyright 2015, Banjogrrldiaries

Spring has sprung!

12 Apr

Greetings, faithful followers. I am still alive and kicking…okay, well, I’m not really kicking, but I am alive.

I just had my six-month check up at Yale with the endocrinologist who is managing my XLH and it was an informative and helpful trip. I am tolerating the XLH meds well, so well, in fact, that my doctor wants to increase them to improve my numbers a little bit. Now I’m up to three calcitriol pills per day and 4 phosphorous pills per day. I will know within a couple of weeks if I can tolerate the increase. Then, in 8 weeks I will have blood work done to make sure my parathyroid hormone is under control. It is very important to monitor both the parathyroid and the kidneys when you are an XLH person on calcitriol and phosphorous.* (See footnote–pun intended!)

While doing my “medical tourism” last week, as my family doctor calls it, I also found out that I have a broken foot. I had wondered why it has been hurting so much for the last year. I mentioned it again to my endocrinologist on Tuesday, telling him it still wasn’t feeling right and so he sent me over to get an x-ray. He called me the next morning to tell me that it was broken and that I needed to go see my orthopedist when I get back to NC. He said it’s an insufficiency fracture.

So there go my soccer career plans.

Anyway, I made an appointment with my orthopedist and saw him a couple of days ago. He said that he wasn’t surprised that my foot had been hurting for about a year, because this particular location in a foot  is a “real booger to heal” when it is fractured. I love having a doctor who is a Southerner like me and who speaks my language!

Just so you know, an insufficiency fracture is a type of stress fracture. What is the difference? The cause. Athletes get stress fractures caused by abnormal stresses on their normal bones. My orthopedist rattled off several names of famous basketball players who had gotten them in this same spot on their feet.

Mine is an insufficiency fracture. Here’s a good definition I found for it: “Insufficiency fractures are a type of stress fracture, which are the result of normal stresses on abnormal bone” (From radiopaedia.org.). Yep–I’ve got the abnormal bone, for sure. So I cannot blame my athletic skills, like knitting and photography, for the broken bone. Darn.

My endocrinologist told me on the phone that the broken foot was another good reason to increase my medication. He said it would help speed up the healing process of the fracture.

I was feeling overwhelmed by all of this but decided to make myself feel better with a new pair of shoes. At this particular shoe store, referred by my orthopedist, I found out all about “neutral shoes” and that this type of shoe would be better for a bowlegged person like me. Most shoes, but not neutral shoes, help people to walk or run more on the outside of their feet, according to the salesman. A neutral shoe is more cushioned, too. Lord knows, I need more cushioning for my feet, and I don’t need to walk more on the outside of my feet than I do already! The fracture was on the left side of my left foot, another reason not to wear something that rolls my feet outward.

I have learned more about feet this year than I ever dreamed I would. I learned last year that my sore feet could only tolerate New Balance WIDE shoes, and only the ones made in Indonesia. The NB wide shoes made in China or Vietnam hurt my feet. Weird, huh?

So, my latest pair of shoes, which are “neutral” shoes, are made by Saucony. In addition to being wide enough, they are also the lightest weight shoes I have ever put on my feet! They’re expensive, though, so I hope they last forever. Well, at least as long as my feet last.

The next thing on the horizon is the XLH adult drug study of KRN-23 that may begin in the fall. I will be eligible for that. You can read more about that study at xlhnetwork.org. In the meantime, I will continue on my current meds and hope that I don’t get any more fractures, which we are prone to get!

All in all, it was a good 6-month checkup. It was sort of like life–a mixture of bad news and good news. Even the bad news (the foot fracture) was good in that I was glad to know I’m not crazy and imagining that my foot “ain’t right” as we say in the South. Life is like that sometimes. A mixture of the bad news and good news, rain and sunshine, thorns and blossoms.

Happy Spring everyone!

Thorn bush blossoms

Copyright S. G. Hunter and Banjogrrldiaries, 2015. All Rights Reserved.

*If you’re a person with XLH reading this blog, please be sure to subscribe to the listserve of the XLH Network (xlhnetwork.org) so that you can be sure you’re being correctly treated for this disorder. There’s no need to make an already complicated disorder more complicated by being improperly treated! The XLH Network is a great resource for both patients and doctors, so take advantage of it. And, if you’re able, please support the network financially. It’s important to have groups like this who advocate for us on our behalf and there are some wonderful people who volunteer their time to do that for us. Many of those volunteers have XLH themselves or family members with XLH and spend time educating medical and pharmaceutical professionals about our rare genetic bone disorder.

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!