Tag Archives: insurance

Step(s) Count

23 Jun

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I am feeling pretty pleased with myself this evening. I am on a short vacation with Professorgrrl in Denver, CO, and today I reached a new all-time high in the number of steps I took in one day. Over 15,000!

I have been counting steps with my little Samsung phone health app for about 2 years, and my daily goal is 6,000 steps. I feel like that’s a good goal for me because it’s attainable and for the last two months I have reached it almost every day. I know that the experts, whoever they are, say that 10,000 steps are a better goal but when you have some physical limitations, as many folks with XLH have, and many much worse than mine, it’s good to have attainable goals. I rarely go over 8,000 steps a day.

Today, though, we toured the Denver Botanic Gardens and also went to a Colorado Rockies baseball game and we travelled by bus and on foot. Add a little bit of getting lost or turned around, and by the end of this day, I have walked over 15,000 steps. Don’t get me wrong…my feet and knees are killing me and all the other bones below my navel are complaining, too. I have increased my nightly dose of pain meds tonight, knowing that all those old bones will still be mad at me in the morning.

However, let me just say that I honestly don’t think I could have done all this without the help of the trial drug. (Yes, I’m still in the XLH drug trial.) If nothing else, it gives me energy to keep going. It’s not a cure, and it doesn’t reverse the damage that 56 years of living with XLH did before I started it, but my energy level has increased which has helped me to be more determined to keep being as physically active as I can.

My drug trial will end in September. Honestly, I am worried. I am worried that my insurance will refuse to cover it. I’m worried that they will only cover a small part of it and my copayment will be ridiculously expensive. I’m worried that families with children who have XLH will not be able to afford it and children with XLH really should have access to this medication. I am a little bit of a worrier anyway, but given the state of healthcare in the USA, I don’t think I’m over-reacting here. I hope that the powers who control us and our health (insurance, government, medical people) realize that a middle-aged adult who can still work and be physically active thanks to a monthly injection is a value to our society rather than a burden. I am a hopeful worrier.

In the meantime, and for the next few months, at least, I will continue to plug along, continue to walk (my new shoes, New Balance 880’s have helped!), continue to aim for those “badges” and positive affirmations from my Samsung phone health app (“You did it! You reached your step target with time to spare!) and continue to be hopeful that we XLH’ers will get the medicine we need to keep on keeping on.

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Copyright 2018, S.G. Hunter and Banjogrrldiaries

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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.