A couple of months ago, my 8th grade son with hemophilia had “Future Bruin” night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we’ll have to go through to educate a new staff. Since we have already begun those conversations and his older sister is a freshman at the same high school this year, I felt like we have a jump start on what to expect. We attended the incoming freshmen night with a hope of Thomas being able to get his bearings around the rather large school campus. What I didn’t expect to gain from that night was a bleed for myself.
It happened innocently enough. We were walking through a hallway and Thomas saw one of his current teachers up ahead and said to me, “There’s Mrs. L.” In my haste to spot her in the crowd so I could say hello, I wasn’t watching where I was walking and bumped my right elbow into a wooden display case hanging on the wall.
You know that searing pain when you ram your elbow into something? Yeah, well, we were in a school, so I managed to not scream obscenities and said hello to Thomas’s teacher. But the next words out of mine, Thomas’s, and my husband’s mouths were, “That’s gonna end up as a bleed.”
Later that night as I got ready for bed, I checked and no bruising had formed and honestly the initial sting of pain had gone away. I forgot all about my clumsy move until four days later when I was running errands with Thomas.
“Probably from the wall,” he replied. “You do have mild hemophilia, remember? It’s probably been oozing in there for days.”
Oh yeah. I had forgotten.
It is easy to forget when you have mild hemophilia and you don’t get joint or muscle bleeds very often. That initial flash of “Oh crud, this could end up as a bleed,” is quickly forgotten after a few hours when the pain subsides.
The pain in my elbow and forearm intensified rather quickly that day and started to radiate down into my hand. Because it was in my dominant hand and I have terrible veins to begin with, I knew that trying to poke myself for an infusion was a lost cause. Driving with one hand, I managed to get Thomas and myself home from our errands. The kids set me up on the couch ensconced in icepacks until my husband could come home from his errands to infuse me.
After the fourth unsuccessful poke, I was halfway ready to just deal with the bleed. Thomas was somewhat gleefully enjoying and somewhat emphasizing with my plight. But the intense pain was enough to try a fifth needle stick and finally, my veins cooperated.
Later that night, I said to Thomas, “There’s really no way to explain the pain behind a bleed is there?”
“Yeah, it’s like bubbling or your foot falling asleep, but a hundred times worse,” Thomas agreed.
“I wish there was some way to demonstrate it to others, but that seems cruel. Because the only way I can describe how my elbow feels right now is like someone has a vice grip on the joint and a thousand rubbers bands around my upper forearm,” I replied.
“Yep. Your elbow is definitely bleeding,” confirmed my experienced bleeder.
By the next day, I was doing much better. The treatment plan my provider and I had previously agreed upon worked and other than some mild lingering soreness, the pain from the day before was almost as forgotten as the original bump into the wall.
But every time I experience a bleed, I am reminded of the awe I have for my son who has severe hemophilia and inhibitors. He has experienced countless bleeds, some of which were epically more painful than my little elbow bleed. My bleed had been bothersome for a few hours; Thomas has had bleeds and the accompanying pain that has lasted for days, even weeks.
How to you explain that someone who doesn’t have hemophilia? How can they experience how someone contains that pain, the frustration of missed pokes, and the feeling of not wanting or being able to move a limb?
The only explanation that I can come up with is that bleeds hurt, and that they hurt a lot, but the people who fight through those experiences are exceptionally stronger than the bleed.
Sonji lives with her husband, Nathan, and three children Nora (15), Thomas, (13), & Natalie (11), in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.