Pain Scale

22 Jul

Have you heard of the pain scale? When you report to your doctor that you have pain, he/she will usually ask you this question: “On a scale of 1 to 10, with 10 being the worst pain you’ve ever had, how would you rate your current pain?” If you’re a person with XLH in the U.S.A., you’re probably familiar with the pain scale.

Professorgrrl says that whenever her father went to the doctor about some new pain he was having, and the doc asked him to rate it on a scale of 1-10, he always said 10, so that he’d get the most help available. He believed he wouldn’t get enough help or medication if he only gave it a 5 or a 6.

My understanding of that pain scale is that I am supposed to compare my present pain with the worst pain (a #10) I have ever felt. My grandmother once told me that childbirth was the worst pain she had ever felt. It was so bad, she thought she would die. I asked her why she went on to have three more children after that first time, knowing full well it was going to hurt. “You forget how bad it was, ” she said.

I clearly remember my worst pains. I’ve never given birth, so I guess I’ve had it easy, but my #10′s haven’t been forgettable.

1980′s- I had to have a dye injected under my left kneecap so that the orthopedic doc could get a better idea of what was wrong with my knee. Mercy, that hurt. I probably teared up for that. I’m pretty sure the needle was the diameter of a pencil.

1990′s- I had an abscessed front tooth. I wanted to die. No pain meds helped and one of them made me very sick on top of that. A bad few days. Really bad.

Last week: I had a diagnostic mammogram (or “slammogram” as I like to call them). I had one of these last December too but I think the technician last week had a sadistic streak. The more calcifications and density you have in your breasts (my sister is convinced I’m mummifying) then the more “technique” they apply with those machines. I am not lying–they actually used the phrase “apply more technique.” Lady, you apply makeup; what you did to me last week was to torque down on that gear knob. I get to have another one in six months. Woo hoo.

Yesterday: I picked up the water hose sprayer to go fill up the bird bath. Between my hand and the sprayer was a hornet or wasp or some other evil pollinator. I am shocked at how much that sting hurt! I yelled while applying ice and baking soda. My beagle was afraid of me because of the racket I made, yelling, cursing and stomping my feet. It still hurts! It only feels bruised today, but wow, I am stunned that a creature that tiny could hurt me (a level 10 pain) like that for a full 10 minutes, and then still hurt the next day. Thankfully, it was only 10 minutes of #10 pain, unlike childbirth.

That is my list of level 10 pains on the pain scale, those pains by which all my other pains are measured. Thinking about those #10′s, my other regular daily pains don’t seem so bad today.

How about you? What are your #10′s? Besides childbirth, of course.

 

Sage Bumble Bee
The bumble bee doesn’t seem to be very aggressive. Probably not the perpetrator from yesterday.
Honey Bee
The sweet little honey bee. The first time I ever got stung was by a honey bee. I was about 3 or 4 years old, and picking flowers to give my mother. The bee sting really put a damper on that experience. But for her, I’d pick flowers again.
Invader
A wasp, mooching off the hummingbird feeder. Very high on the suspect list, in my opinion. Grrr…
Copyright S.G. Hunter and Banjogrrldiaries, 2014. All Rights Reserved.

My Inspiration

21 Jul

Those of you who read my blog who have XLH know that our bones “act” older than we really are. Sometimes I feel like I’m aging at warp speed–not all the time, but sometimes. Of course, we’re all getting older if we’re fortunate enough to still be breathing. One of my dogs, Deacon the Jack Russell Terrier, has been a true inspiration for me in the last year. He’s an old guy–almost 14 years old by my estimation–and he inspires me every day. He is the most determined creature I know when it comes to carrying on with the daily routine of living. He makes sure he gets his walk and his food at the time he is supposed to get them. I can set my clock by him. If I try to stray outside the routine, he makes sure to get me back on track.

He is a rescue dog; his “owners” abandoned him in 2002 and he managed to “find” me. He was heartworm-positive and needed two rounds of treatment to recover. He also smelled so bad when I first took him in, that he had to sleep outside in a crate on the deck for the first night or two until whatever he had been eating off the streets had made its way out of his system. A bath could not rid him of his foul odor. I had another Jack Russell Terrier at the time, Pogo, who ruled the house (and me) and Deacon’s personality never really came out until Pogo died 2009. I discovered that Deacon had his own distinct personality and is very smart. Prior to that, I had my doubts. He lived in Pogo’s shadow. Come to think of it, I also lived in Pogo’s shadow!

Within the last year, I have been inspired by Deacon and how he deals with aging. It’s not always a graceful aging process with him–sometimes, he starts up the back steps and missteps and rolls back down–but he gets up, determined to make it back up. On those days when he’s moving slower than usual, he will ask for help. So, here’s my series of photos I have taken within the last year that I’ll call “Everything I ever learned about aging, I learned from Deacon.”

#1 Be open to new adventures, even if it involves riding in the back seat of a car.

Deacon riding in the car

 

 

#2 If possible, take time to sit outside in the sunshine.

Deacon

 

#3 Observe the world around you. God’s creation can still amaze us, even when we’re older. Maybe we can’t see it or smell it as well as we used to, but we can still be amazed. And, of course, be on the lookout for squirrels.

Deacon on the alert

 

#4 Some days, you’re just going to feel like crap. Be extra good to yourself on those days, maybe even throw on your party beads and wrap yourself up in a cheerful blanket.

Deacon in his finest

 

#5 Try to make new friends, even if they’re very different from you. It might take some time, and you may want to chase them away at first, but you might end up liking them more than you thought you would!

Deacon meets the neighbor's cat

 

#6 Accept offers of assistance. (This one is really hard for me!) Sometimes, we just need a little help getting up those steps, or reaching things on the top shelf at the grocery store or picking up something we’ve dropped. Let someone help you. It might make their day!

Deacon and his assistant

 

 

#7 Take naps. Aging can be tiring. Also, there is nothing wrong with having a favorite blanket, if that helps you to take a good nap.

Deacon and his blanket

 

 

#8 Relax. Try to get rid of the things in life that cause you tension. Meditate or pray. Take time to just be still and perhaps get a new perspective.

Deacon rests

 

 

I love this little guy. I hope he will continue to mentor me through the aging process for a little while longer!

 

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

 

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.

Old Baldy

18 Jun

Bald Head Island Port

The Port at Bald Head Island

If you have followed my blog, then you know I have a “thing” for lighthouses. When my orthopedic surgeon told me I still have some time left on my old, worn-out, arthritic knees, I decided that I would make my steps count. Climbing lighthouse steps, whenever possible, is one of my ways of making by steps count.

Approaching Old Baldy

Approaching Old Baldy. Yes, the top is off-centered.

Up the shaft

Looking up Old Baldy, from the inside

A couple weeks ago, I almost “conquered” another set of lighthouse steps. Old Baldy, on Bald Head Island, NC, has 108 steps. I climbed 105. The last three I didn’t climb because I was either, #1, chicken, or #2, realized I wouldn’t have anything to hold on to when it came time to turn around and descend the steps therefore making it unwise to “try it and see what happens.” I’m not saying which. I will say, though, that every time I thought about those last three steps and imagined trying to climb and descend them, I got a queasy feeling in my stomach along with a heart flutter. Even now, thinking about it makes me feel woozy. In my imaginings, the ones that made me feel queasy and fluttery, there was nothing to grab to help me climb those last three steps. Professorgrrl was at the top and could have helped me get to the very top, I guess, but I’m not sure she could help me descend, unless she went first and broke my fall. And that would be very unpleasant for both of us. When I got home, and looked at my photographs from the trip, I discovered something very odd. There was a handrail at the top! I have no memory whatsoever of that handrail. My camera sure did remember it.

Three steps short

Looking up into Old Baldy

Have you ever been so fearful, that you’ve been blinded by your fear? My fear of heights that day completely blinded me, I guess. I later stared at that photograph and thought, “Where did that handrail come from?” At the time, all I could imagine was falling when it came time to turn around and descend, due to a misstep. Perhaps I could have climbed the last three steps. I don’t know.

20140529_152143(0)_1

Looking down from the 105th step

I know that I have long lived with a fear that I would end up in a wheelchair long before everyone else does. Maybe being a child in braces does that to a person. Maybe getting old with a bone disease like XLH does that to a person. Maybe just getting old does that to a person. I am learning to not let fear blind me to the moment that I live in. And in this moment, I can walk. A little crooked sometimes, and sometimes with a hiking stick, and sometimes holding on to Professorgrrl’s arm, but I can walk. I often say that if I wake up and my feet hit the floor before my butt does, then it’s going to be a good day. So, I walk. I climb (lighthouse stairs only). Sometimes, when no one is looking, I dance—a crooked dance, but a dance, nevertheless.

So, what are you going to do with this moment?

Peeking into the top of Old Baldy

Peeking into the top of Old Baldy

Copyright 2014, Banjogrrldiaries and S.G. Hunter

Calcitonin Drug Study at Yale

1 Jun

Some of you folks with XLH may know about the study that is currently underway at Yale University. Here’s the information on the drug study: https://clinicaltrials.gov/ct2/show/NCT01652573 Last month, I volunteered to participate in the study, because my endocrinologist recommended it, and flew to Yale in New Haven, Connecticut. There’s not a whole lot to tell, except that they collected a lot of urine from me, and did several blood draws. For those of you who hate being stuck by a needle, they actually put in an IV with stop cocks, rather than stick you 7 times. Just one stick, about 8:00 in the morning (what a way to start the day!) and the IV was left in until about 10 AM the following morning. Here’s my selfie of it:

IV with stop cocks

And because I have a friend who is a research scientist, I HIGHLY edited my photo to make it as creepy as possible, and sent this one to him:

IV photo edited

Professorgrrl went with me to Yale, which requires an overnight hospital stay for the study. She knows how flying negatively affects me. Plus, this would be the first time in my life (except for when I was born) that I had ever spent the night in a hospital, which is pretty rare for any middle-aged woman. I was not worried about the hospital stay. In fact, the thing that worried me the most about the trip was that I might throw up on the plane. So, Professorgrrl found a two-hour direct flight, drove me to the airport, and steered me to my seat, while I enjoyed the benefits of Dramamine. My first nurse at Yale said that Professorgrrl was my “Sherpa.” That’s about the truth of it. There are times I definitely need one!

Landing in Connecticut

Landing in Connecticut. I am happy to report that I did not throw up, thanks to Dramamine.

So, how does one blog about a drug study for a rare disease? There’s not a whole lot I want to say, except the nurses, the research assistant, and the doctor (whom I referred to as a “rock star in the XLH world”) were all so incredibly nice and wonderful and knowledgeable. And compassionate. And I’m sure I could think of several other glowing adjectives for them. I felt very cared-for and listened-to and understood. Many people, not just folks with XLH, don’t always get that from their medical caregivers, but I sure did.

I have been taking the calcitonin nasal spray (or placebo) since then, and will continue to take it for the three-month study and then return in August to Yale. There are two local lab visits in the middle of the study (blood and urine) and my first one will be next week.

So, that’s it. Pretty cut and dried, nothing exciting. And when that happens in my blog, well, I post photos.

New Haven is a beautiful city, with lots of very interesting architecture. We were able to do some walking on and near the campus, eat at a good restaurant (did you know New Haven is known for its good pizza???) and go to the Yale University Art Museum. Enjoy the photos!

Yale University tower from the Art Museum window

Yale University tower from the art museum window.

Yale Art Museum window

Yale University art museum window and steps. Those of you who have followed my blog know that I have a “thing” for climbing the steps of lighthouses. I don’t have a thing for climbing steps in a museum, however. I used the elevator.

Yale University building

A building on the campus. They don’t build buildings like this anymore!

The tower at Yale

The tower on the Yale campus is ornate and beautiful!

Come Unto Me

Engraved above the window of this church is a paraphrase of Matthew 11:28. “Come unto me all ye that travail and are heavy laden and I will refresh you.”

Sunset at Yale Hospital

View of the sunset in New Haven from my hospital room. In the distance, you can see the mountain, Sleeping Giant.

Sun sets on the Yale University tower

View of the tower at sunset from my hospital room.

Looking out the Yale University Hospital window

Sunrise view out the window of my hospital room.

Copyright 2014, S.G. Hunter and Banjogrrldiaries

Pain

29 Mar

It’s not unusual to see healthcare articles about the treatment of chronic pain in adults. I have thought about the subject of pain quite a bit recently, due to reading some online discussions of that topic. Adults and children differ in their ability to handle pain, in my opinion.

I imagine a child who climbs a tree, but falls out of it and breaks her arm. Obviously, she’s going to hurt from that! She would cry, run to the house and look for her mommy (or other parental figure) for comfort, and have to go to the doctor. “Bless her heart,” is what we Southerners would say. The child would get treated at the doctor’s office, get some pain medication, and get a big ol’ cast on her arm. She would also get a lot of attention from the doctor, nurse, parents, grandparents and friends. The child would obviously feel actual physical pain from this fall and subsequent break of her arm. Her crying is most likely due to the actual physical pain of the event so treating the pain is straightforward. She probably isn’t going to think, “Oh, no, I’ll never get a date to the prom in ten years because I’ll have a crooked arm from now on.” She probably won’t worry about the cost of the pain meds, cast and sling and doctor’s visits. I doubt she’ll think, “I’ll never be able to get a summer job working at the Myrtle Beach Putt Putt because this arm will never be the same. My job options are now limited.” She’s a kid—she just feels the physical pain of falling out of that tree and breaking her arm. The only emotion she might attach to this event is a short term fear that her mom is going to be really ticked off that she climbed that tree against her mother’s wishes. That fear will probably dissipate once she sees that her mother is going to comfort her and take care of her rather than bawl her out for disobedience. (That will come later.)

This isn’t usually true for adults. With physical pain, especially chronic pain, there comes a huge range of emotions. I believe that this is the main reason why doctors simply cannot treat adult pain effectively. All the pain meds in the world won’t stop an adult from worrying about what this pain they’re dealing with means for their future health and financial status. Adults don’t just feel the physical pain—they worry about it affecting their quality of life. Young adults, with diseases and disorders that cause debilitating pain, worry about things that most people take for granted. “How will I work and feed my children? How will I hold my child or pick up my child?” Pain is not just a simple problem that can be “fixed” with some pills, a doctor’s visit and a hug and a kiss from mommy. Middle-aged adults with chronic and/or debilitating pain worry about many things—losing their independence, becoming disabled, not being able to find meaningful work, not being able to walk their dogs or pick up their grandchildren. Single adults with chronic and/or debilitating pain might fear that they’ll never find a date or a spouse because of their physical limitations. Let’s face it—people who can ski, bungee jump, and run marathons are way more exciting and make better life partners, right? Right.

A while back, a friend wrote to me to tell me she was going through a very rough time. She told me that she had decided to tell two people what she was going through. I was one of the two she chose to tell. At first, I questioned the wisdom of her only telling two people. I worried that maybe she should tell more than two people, thinking that telling more than two would give her more support. More is better, right?

However, within 12 hours of my friend telling me what she was going through, I happened to mention to a person a little bit about my XLH. I normally don’t discuss it but I did, casually and mostly in medical and scientific terms. This opened the door for this person to respond with a very stupid comment, stated with great confidence, which made the comment even stupider. (Is that a word? No? It is now.) It left me feeling very vulnerable and irritated.

Suddenly, I realized my friend was right. Tell two people. That’s it. Are you feeling like crap? Are you in pain (physical and/or emotional)? Tell two people. That’s it. That’s plenty. Don’t add to your pain by telling so many people that your chances of getting a stupid or insensitive response are increased tenfold.

Be selective. Tell your spouse or best friend or a clergyperson or a professional therapist. Tell your online support group if you have one (yeah, I know that’s more than two people, but it’s only one “telling” of it.) You can also tell God. If you don’t believe in God, then find yourself a “Wilson” to tell. (Watch the movie “Castaway” if you don’t know who Wilson is.) Even if you tell just two humans, there’s still a chance that someone might give you a stupid response. (My friend told me, and she knows I am capable of stupid responses, but I’m glad she trusted me anyway.) The last thing you need to do is feel even more vulnerable in addition to the physical and/or emotional pain that you’re already experiencing.

So, my “advice” (which should always be taken with a grain of salt, remembering that I’m not a therapist or doctor, merely a blogger with XLH) is to treat your pain (physical and emotional) in a multifaceted way. Medication might not completely take away physical pain in adults, in my opinion. We have to deal with the emotions that come with it—the worries, fears, sadness, grief, loss, etc. Tell someone or two (okay, three for you extroverts) about it either in person or by writing, if you’re a part of an online support group. There are people who will be compassionate listeners.

And, just because I like to throw in a photograph or two in my posts, I’ll tell you another thing my friend told me. She said she doesn’t like to look at herself in the mirror when she’s had a crying spell. I sure know that feeling! My face looks like I fell into a bee’s nest when I cry—red and splotchy and puffy. I really try to avoid low hanging mirrors when I cry, which is about twice a year, so I won’t see my splotchy face. And next time I cry, I have found just the place to do it—a recently renovated restroom at a college where I work. Eat your heart out, tall people.

Bathroom mirror

Just for your information: this mirror goes all the way up to the ceiling in this bathroom, but the bottom edge is, obviously, too high for me to see my face. It’s a good thing I’m not vain. Who designs these bathrooms? Why does the mirror extend all the way up to the ceiling but not down to the sink? For the life of me, I don’t recall ever seeing a 7’ or 8’ tall person at this college, who might need a mirror like this.

Copyright 2014-2019, S.G. Hunter and Banjogrrldiaries

Winter-cise

17 Mar

This year in the South, during the months of January, February and March, we have been experiencing a thing that non-southerners call “Winter.” This happens to us about every 5-10 years, and of course, we feel sorry for ourselves and victimized by Mother Nature. She’s basically picking on us this year. Here in NC, we have seen a couple of snowstorms, ice storms, single digit temperatures, and I have personally seen more snow-covered lawn furniture photos posted on Facebook than I have ever seen before. I thought people did that because snow-covered lawn furniture is ironic; however, one friend told me that people use their lawn furniture to show off how much snow they got. Who knew? I still think they do it for the irony, and just don’t realize it.

So, my daily walks with the dogs have been greatly affected by this bad weather. In the mornings, I can hardly walk in perfect weather, never mind icy, snowy weather. Professorgrrl insists that I stay inside and not take the chance of going outside and falling. Being a person who likes to “chillax” as kids say, I don’t argue. However, this doesn’t help me keep my, ahem, girlish figure. (Neither does aging.)

Therefore, I devised my own indoor exercise plan. Since the house is all one level (yep, that’s on purpose) I decided to count how many steps (my steps, not a regular person’s steps) there are from the kitchen on one side of the house to the back bedroom on the other side of the house. There are about 50, making a round trip of 100 steps. I went online and found that around 2500-2600 steps equals one mile. (I guess that’s regular people’s steps.) I decided I would walk in the house on snowy and icy days to “get my exercise on.” The first day, I stopped at 600. That was before I discovered how many steps equal one mile. Then I knew I needed to push a little harder than 600 steps. So far, the most I’ve gone is 2000 before the left knee starts to complain loudly. Walking is one of the best things for helping my back, though.

And here’s the other benefit. The dogs are completely fascinated when I do this. Well, Tucker actually looks a little worried about the whole thing. He usually stays out of the way and watches from a perch on the recliner.

Tucker staring

But Deacon, the old guy, thinks that this is the most exciting plan that I’ve ever come up with. He walks with me, and must think we’re going somewhere. Today, he even walked with me so long that he started panting and had to stop for water.

20140317_163620_1      Deacon leading me

His happy attitude about my walking (he’s usually an Eeyore, so this is a nice change) encourages me to go for 2000 steps. I don’t know what he thinks will happen when I arrive, but it’s obviously something great.

Sometimes, it sure is nice to have a cheerleader.

Deacon barking

Copyright 2014-2019, Banjogrrldiaries and S.G. Hunter

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