Good thing this column isn’t a podcast because I’m not speaking today. Last night, I chomped down on my tongue for the second time in two months. Not a big deal, you might say. True. Unless you have a bleeding disorder like hemophilia B, von Willebrand disease, or, like me, both. As I write this, any movement of my damaged tongue causes pain.

My tongue didn’t bleed on the outside, as you might be thinking. It wasn’t a gusher — though I think that would’ve been better because I’d know how to treat it. Apply direct pressure with a gauze pad and ice. Mix a paste with Lydesta (tranexamic acid), an antifibrinolytic, and water. Eventually, the bleeding will stop.

Instead, my tongue bled under the surface. The damaged tissue inside my tongue swelled, bruised, and turned blue. My tongue started tingling, and I could feel the pressure building. At first, there was a visible purple bruise and lump. After a few hours, as the bleeding continued, the swelling and purple bruise spread down my tongue toward the back of my throat and to the inside of my cheek.

I am a freak

At this point, I feel like a freak. My tongue is swelling, and I can no longer talk without a lisp. I’m sad and concerned about my airway. Who has ever heard of this craziness resulting from someone biting their tongue?

I Google “bit my tongue” and decide my tongue looks horrifically worse than any of the images I find. Then I Google “tongue hemophilia” and wish I could unsee the results. My tongue is not as bad as most of those pictures, so I feel a little better.

I take some photos with my iPhone to document the situation, but they don’t show the problem clearly because it’s very dark in the back of my mouth. The pictures are gross, so I’ll spare you and not share them here.

What to do

I consider calling the emergency line at my hemophilia treatment center, even though it’s late Sunday night. I think about infusing Humate-P and BeneFix as I did last month when the same thing happened while I was traveling. This time, though, I’m at home in Florida and not in Chicago. At home, I have comfort.

I put the medicine on my nightstand. Instead of infusing, I decide to stay up all night eating leftover COVID-19 popsicles, applying ice, and catching up on “Stranger Things” on Netflix. I realize the coincidence of my tongue now being a strange thing.

The last thing I want to do at this point is stick a needle in my hand to infuse. It’s always my last resort, as I have a massive aversion to it. In the 1980s, medication for hemophilia caused thousands of people to become infected with the viruses that cause AIDS and hepatitis. Many died. In addition, in 2019, too much clotting factor during a major surgery caused pulmonary embolisms in my lungs. I almost died.

The next morning, I contact the nurse at my hemophilia treatment center, who suggests I try Lydesta. At this point, I’m in a “wait and see” period — a familiar situation for many women with hemophilia and people with mild hemophilia.

One thing is for certain: I’ll never take my tongue for granted again.