Page 20 - HFA Dateline 2016 Q3 Fall

muscles are inflamed, they tend to atrophy from lack of use. That’s something people
notice: if ankles are damaged, calves tend to be skinnier than normal. If it’s the elbows
that are inflamed, biceps will tend to be smaller.
When I was in college, I fell in love with rock climbing. I would wear Aircasts on my
ankles, hike a couple of miles to climbing sites, climb several routes, and hike back
out. Of course, that night, and usually the following day, I would not be able to walk
at all. I would literally sit on my kitchen counter in order to cook my meals. I would
crawl on the floor, pushing my plate to the couch, and continue to crawl around until
I could put weight on my ankles again. Luckily I did my rock climbing and hiking on
Saturdays, so by the time Monday rolled around, I was able to limp to class. I was in
pain but it was pain I could tolerate. Why did I do this to myself? Well, rock climbing
was something new and exciting; it tested my strength, agility, limitations, and, yes,
my mental toughness as well. When I was able to accomplish any route no matter the
difficulty, I was exuberant! The feeling of accomplishment and happiness gave me
goosebumps. A man can put up with a lot of pain for that kind of joy.
How do you manage pain?
For the most I’ve suffered, endured, and tolerated the pain. It was, and is, not easy.
Acetaminophen couldn’t touch my arthritic pain. In middle school, I wore a cast for
a month on one ankle and wore several types of braces. In high school I discovered
Aircasts and they worked the best with the boots I wore at the time. They stabilized
and supported my ankles up, down, left and right. I still had pain moving from class
to class but the Aircasts helped. By high school, I was taking ibuprofen almost every
day and it was a life saver. I know ibuprofen is not recommended for people living with
hemophilia, but it worked for me and I always took it on a full stomach.

As I got older, I graduated out of Aircasts and into a kind of boot that provides me
with the support I need. I discovered, though, that I was getting soft tissue bleeds from
consuming all that ibuprofen. A hematologist prescribed hydrocodone, but that gave
me terrible headaches, which wasn’t a worthwhile trade-off. Now when I need pain
medication, I take Tramadol and ibuprofen to get me through the day. I cannot recom-
mend this treatment to anyone else, in fact my hematologist has told me specifically
not to use ibuprofen. But I don’t want to take stronger narcotics and risk addiction. In
addition to the Tramadol and ibuprofen, I use cold gel packs for topical relief and my
shins and ankles are regularly massaged by my wife.

What has been your experience with pain management
treatment options?
Treatment options have mostly come in pill form: acetaminophen, didn’t work for
me; Celebrex, worked well, but hurt my kidneys; naproxen was great, but it gave me
too many bleeds; hydrocodone and oxycodone gave me headaches; ibuprofen I could
tolerate well; and finally, Tramadol. I do find it worrisome that some doctors will write
prescriptions for strong narcotics to members of our community, seemingly careless-
ly. I've seen Blood Brothers on very strong opiate pain medication, and it is troubling.
While strong narcotics are necessary in many situations and are taken under the
guidance of medial professionals, the risks associated with them are what worry me.
Which day-to-day activities help you cope with your pain?
Exercise is always good; I try to do it at least twice a week. What helps the most is
doing things that keep my mind off the pain: playing and listening to music, going
to the movies, reading books, watching favorite TV shows, and playing video games
are all good distractions. I like outdoor activities like fishing, too. Being in nature and
20 Dateline Federation | Fall 2016