Tag Archives: health insurance

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.



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!



Copyright 2017, S. G. Hunter and Banjogrlldiaries

Happy Birthday to Me

7 Jul

Today is my birthday. I have completed 52 years of life. It’s always nice to feel like I’ve completed something.

For my birthday, Professorgrrl gave me Adele’s album “19” which is now playing on my iphone. She said to me, “I thought that since one of Adele’s songs got you through your MRI,” [see my post on June 16, 2012] “then maybe one of her songs from this album will get you through your colonoscopy…”

That statement will certainly influence how I listen to the album, will it not?

Ah, the joys of aging. In addition to receiving regular requests from AARP to join up, my insurance company is sending me reminders that I am due for some test or another, due to being over 50. The latest was a reminder that it’s time for a colonoscopy. They’ve been sending that letter for 2 years now. That’s pretty bad when your insurance company WANTS you to go and spend some of their money!

Sometimes, I feel like this Mama Wren who has taken up residence in the back yard…not quite sure if it’s safe to leave the comforts of home. Especially if there is someone waiting for you out there holding suspicious-looking equipment…



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

Healthcare, Health Insurance, Etc.

29 Jun

Okay, I am stumped. I want to write about health insurance and health care, but since this is a blog, and not a book, I don’t know what to write. If I leave out all of the problems with the health care system in the U.S., and all the problems with health insurance in the U.S., then I won’t have very much to write about! Plus, I was hoping that my blog could always bring a little bit of humor and positive thinking into the world, and there is simply NO humor in health insurance, even if you have it. Hmm…

Today, (June 28th, 2012) I listened to NPR’s program called “Talk of the Nation.” You can find it online at npr.org. The Supreme Court made a ruling on what folks have nicknamed “Obamacare” and it has generated a lot of discussion and news here in the U.S.A. One controversial aspect of the legislation requires all citizens to purchase health insurance. A fellow named “Joseph” who is a 27 year-old part-time janitor called in to the show and was asked by the host, Neal Conan, if he was going to buy health insurance coverage if he was required by law to do so. His reply was, “Yes, I would. I mean, I feel it’s my duty as a patriotic citizen. I mean, I’m 27 years old, and you guys have been talking about how young people would be forced into paying for the people with preexisting conditions and things like that. But as I get older, those younger people will be helping me. So I just feel it’s my duty to help them. Somebody has got to start the system going.”

Wow. Who is his mama? And how in the world did she raise such an altruistic and selfless son? My eyes literally filled up with tears when I heard him say this. And this is not good, since I was driving.

As I watch my health insurance premium climb ever higher with each passing year (it’s getting close to being the amount of my house payment), I wonder how in the world am I going to pay for the health care that I will need as get older? Yes, I do have a “medical situation” that I was born with, but like most folks, I will develop other health problems with age. And I consider myself a relatively healthy person…I don’t smoke, I eat very healthy foods (no red meat, not much salt, etc.), I take a walk every day, drink lots of water. Yet, my health insurance company, Blue Cross Blue Shield of NC, is hoping to get out of paying for a part of the MRI that I just had. How do I know this? They sent me a form asking me to tell them if my back problems were work related, something that might be eligible for worker’s comp. I am a sole proprietor of my business, and no, there is no worker’s comp insurance for BCBSNC to go after. Yes, my work might aggravate my back pain, but so does breathing, and I don’t intend to stop that any time soon. If I feel pain, it means I am alive! So, give me the pain. And the Tylenol.

We have a broken system here in the U.S.A. Well, it’s broken if you don’t work for some big company that provides you with health insurance. Because I am an individual purchasing coverage, my premium is more than if I were getting it through a job in a corporation, and thus, part of a group. Does that make any sense whatsoever? If I closed my business today, and got a job in a large company that provides health insurance, my health would not change, but my premium would. The premium would be less, because the insurance company would give the employees a break in the price…like a quantity discount, if you will. But, hey, why not give me, the sole proprietor, a lower rate too, for being part of a group called “the human race.” That’s not going to happen…let’s face it…companies are started in the U.S.A. so that someone or a group of people can make money. The way you make money, is to lower your cost of doing business, so that there is more profit to go around. And how do you lower your cost of doing business if you’re an insurance company? You charge the expensive people more or ditch the people who cost too much…people with preexisting conditions (like XLH, and some people with this have been rejected for insurance), people who use their insurance a lot (you know, like sick people), etc. I understand this…I am a business owner. I travel with my job and my profits are more if I have to travel to a customer who only lives 3 miles away, as opposed to 15 miles away. So, if I wanted to increase my profits, I would either charge the person more who lives further away, or choose to only serve the people who live less than 3 miles away from me.

The other difficult part of health insurance and health care is that we cannot legislate what people eat or put into their bodies, as long as it’s legal. So, if a person wants to eat 10 Twinkies and wash those down with a case of beer every day, and increase their health costs as a result, then that person is going to increase the health costs for all of us, even those who don’t eat Twinkies and drink beer. Multiply that snacker by several thousand and you’ve got yourself a higher health insurance premium for everyone, thank you very much. Most likely, though, those Twinkie-eating beer drinkers won’t be around very long to cost us extra for years and years. But, they’ll be fun to invite to parties!

It’s complicated. I don’t know what the answer is and apparently, I am not alone. Congress is full of people who really don’t know how to fix this problem with the system that we currently have. Doctors have it tough too…they do all these extra tests and procedures to cover themselves in case someone decides to sue them for not diagnosing correctly or soon enough. There are good and bad people on both sides of the equation…HMO’s who are just in it for the money, insurance people who are just in it for the money, doctors who want to help people, but have to charge an arm and a leg so that they can pay their malpractice insurance premiums and med school loans. And I know there are insurance agents who are good and honest people as well as doctors who are in it only for the money. My list could go on, especially if I included the pharmaceutical side of health care. It all reminds me of those occasional times when I reach down into my knitting bag and pull out a wad of yarn balls that have inexplicably knotted themselves together into such a mess that I wonder, “How in the world did this happen? I’ll never be able to pull this tangled mess of a knot out!”

All of this, if you think about it too much, can just be too depressing. I certainly don’t want a depressing blog. So, I googled “joke insurance agent” just to see if there IS any humor in the discussion of health insurance and healthcare. Apparently, insurance agents know how to laugh at themselves, because I found a lot of humor at the website of an insurance company. I’ll leave you with this one:

Mr. James Barricks was a rich old man dying from a rare disease. On this deathbed, he called for his insurance agent, doctor and preacher.

“I trusted each of you with my entire life. Now I want to give each of you $30,000 cash in an envelope to put in my grave. I want to take it with me.”

Mr. Barricks died and at the funeral, each one placed the envelope on top of the man, then he was laid to rest.

On the way from the funeral, in the limo, the doctor confessed, “I must tell you gentlemen, I only put $20,000 on top of Mr. Barricks. I wanted to buy this new machine that would enable me to diagnose his rare disease and save others. It’s what he would have wanted.”

Then the preacher said, “I have to confess, I only put $10,000 on top of Mr. Barricks. We needed that money to help more homeless people, and it’s what Mr. Barricks would’ve wanted.”

The insurance agent was angry at both men and said, “I can’t believe both of you, stealing from a dead man. I wrote Mr. Barricks a check for the full $30,000!”


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