Groin Wiser: Adopting New Strategies to Manage My Rare Disease

I recently wrote an article, Groin Older: Aging With Hemophilia, where I described my life with the bleeding disorder, hemophilia.

My first pulled groin muscle was the star of the piece. I stand by everything I wrote except, "Over time, my groin muscle healed."

That's not untrue. Time just proved the statement to be more true-ish than true.

Same pain, but different

At the time of the writing, I was heading into the holidays pain-free, where the groin was concerned. Right around the time my article was published, I re-aggravated the groin injury, receiving festive holiday-style points by doing so when I was bringing the Christmas tree into the house.

The slight soreness returned, and over the next few days, I bemoaned the fact that premature celebration led to overextending, which set me back. Only this time, the pain was a little bit different.

About 5 days into the Christmas Tree Incident, as it came to be known, I finally realized what was happening when I couldn't get comfortable going to sleep one night. Flipping from side to side, I realized that it was no longer just a pulled muscle. It was a bleed.

An active bleed in disguise

Active bleeds are not always obvious and dramatic, despite the phrase. The fact that some of the discomfort initially mimicked how the groin pull felt helped disguise what was happening after being blindsided by the Christmas Tree Incident.

Sure enough, after I treated myself with clotting factor, the pain disappeared, and soon after, I was catching Zs again with no problem.

How can I limit long-term damage to my body?

Still, I'd unwittingly let a bleed go untreated for 5 days. I already have an arthritic ankle due to years of untreated, under-the-radar small bleeds in the joint.

As treatment options continue to improve, one of my goals is to limit any more long-term damage to my body.

My groin muscle pull and bleed combo meal was discussed in more depth at my yearly check-up with my hematologist, as were new (to me!) strategies, including a more prophylactic approach to hemophilia.

Preventing minor bleeds

Instead of treating a bleeding event after it happens, I can treat routinely to avoid those minor bleeds from occurring in the first place.

Going to physical therapy

I'll also be seeing a physical therapist. This will help me untangle the confused muscles in my groin area, which stands to be far less interesting in practice than it reads. I'd always heard that you always remember your first groin pull, and this one has certainly been a doozy I will remember.

Learning from my experience

As with all new medical challenges, I'm thankful for the wisdom this experience has provided. Has it been frustrating? Could I have done a few things better? Certainly. But we are only equipped to handle a situation with the knowledge we have in real time.

I will also do my best moving forward to keep my healthcare team informed of all injuries sustained – whether I initially believe them to be hemophilia-related or not.

I don't beat myself up about things like this. It's easy to leave the Swiss Army knife at home when you think you are out of the woods.
This applies to just about any rare disease you, the reader, may be managing.

Over time, we learn the lay of our lands – our unique and wonderful terrains! – but sometimes, new little towns emerge that haven't been explored before. That's what this groin issue has been. Consequently, my own little rare disease map has required some updating.

Listen to your body

In closing, as I write this, I may be giving myself what should be my last clotting factor treatment as it relates to this groin issue. From there, it can be addressed solely as what it began as: a non-bleeding related, pulled muscle.

But, I won't claim victory before it's been had. I'll listen to my body, take it easy, and keep my healthcare team informed.

Have you adopted new strategies for managing your rare disease as you have grown older and wiser? Share in the comments below!