Tag Archives: baseball

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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Elbows

3 Jul

Fireworks

 

Tomorrow is July 4th in the United States of America. Which, in this moment, makes me think of my elbows. I know. Crazy.

I have recently discovered that one of the many places that the joints of an XLH-er calcifies with age is in the elbows. I had noticed some pain in my elbows, and noticed that they pop and crack a lot and that they didn’t quite hang straight.

At the Yale study, when I was examined by the doctor, he said this is one of the typical places that tend to get affected by our disorder. He had me extend my arms, and noted that they didn’t completely straighten out.

When I returned home, I also took note that I also could not completely bend them, either. In fact, I discovered that I could not touch my shoulders with my hands (like in the children’s song, “Head and shoulders, knees and toes, knees and toes.”) For a couple of weeks, I asked my friends, who are my age and older, if they could touch their shoulders. They could. I even asked my parents, who are in their upper 70’s, if they could touch their shoulders. They could. So, I realized this isn’t just an “old person thing.”

My physical therapist friend told me to keep trying. Stretch them, extend them, bend them, and keep moving them and try to get them to do what they’re supposed to do. So, I’ve been practicing. Stretching, moving, bending. I have seen some improvement! I can now touch my right thumb to my right shoulder and I can touch my left thumbnail to my left shoulder. I’ve been practicing this every day. That may be the most I’ll ever be able to do, but, I certainly don’t want to lose more ground.

And, tomorrow, on July 4th, I will put my right elbow to good use. I am one of those old-fashioned people who celebrate July 4th in an old-fashioned way. I will go to a baseball game in my town (minor league), stand up for the National Anthem and place my right hand (arm bent at the elbow) over my heart and listen to the anthem being sung. I still remember doing that as a child in school, and the “habit” has never left me. I hope I never lose the ability to do that.

Flag in the mirror

I live in an imperfect country, with many problems but we also have a lot of good things going for us. I have the freedom to sit in my house and blog and write about whatever I want to. I complain about the health care system sometimes, but it is, at least, available to me. I am able to participate in a drug research study at Yale University because the National Institute of Health, which is a government organization, is supportive of Yale doing this study.

We are not perfect here in the U.S.A. Relative to the rest of the world, we’re some of the newer kids on the block. And when I look back to my youth, I see that I made a lot of mistakes. Hopefully, I have learned from them. I hope that the U.S.A. keeps trying to learn from her mistakes.

And, I hope that we keep doing the good things that we’re trying to do, too. In light of that hope, tomorrow night I will place my arthritic right hand (bent at the sore, stiff elbow) over my heart and listen to the singer sing the National Anthem. I will get a little teary, like I usually do, count my many blessings, which are many, and wait for the next explosion of words to come out of the sound system.

“PLAY BALL!”

Play ball!

 

Copyright S.G. Hunter and Banjogrrldiaries, 2014. All Rights Reserved.