When confronting life’s problems, hemophilia included, I never give up

Two and a half years ago, I purchased a manufactured home in need of a few repairs. Truthfully, it had really good bones, but was a dump. But I saw the potential in it and knew that with enough love, time, and renovation it would be a beautiful place to call home.

When I first moved in, I couldn’t sleep in the primary bedroom. To say the room reeked of dog urine would be a gross understatement. The odor was so overpowering I couldn’t breathe. I slept in a different room for two months while I pulled carpet, sealed the subflooring, and laid new vinyl plank flooring. I painted the entire room from ceiling to floor, including every built-in shelf. The difference was huge. The room was usable again.

Slowly, I’ve renovated every room of the house, and one of the last steps was replacing the rest of the flooring. As the process started, I told the flooring guy that I still smelled a faint dog urine scent in the entire house and it needed to go. Room by room, we pulled flooring and sealed subflooring. He said the smell abatement had been completed, but the smell remained!

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“Told you so!” Upon G Shellye’s insistence, workers discover old dog urine stains underneath the kitchen flooring. (Photo by G Shellye Horowitz)

This reminded me of my factor treatment not working, which I recently wrote about. I knew I was bleeding. I was not believed. Persistence over time eventually solved the mystery and proved I was bleeding. My medication wasn’t functioning correctly in my system. A change of medication solved the issue.

In my journey with hemophilia, I struggle with the recurring theme of not being believed. This remains a constant battle for women with hemophilia, as well as both men and women with mild hemophilia. The key is to not give up. Grab on to your tenacity and persevere until answers are found. For me, this has meant documenting everything I possibly can in order to “prove” the issues are real. While I shouldn’t have to do this, it proves beneficial to achieving a faster resolution.

My house still smelled like urine. There was one room left that wasn’t a likely culprit: the kitchen, which had glue on the subfloors and linoleum laid over that. The chance of dog urine there was slim. The new flooring could be laid directly over the old linoleum, which is fairly standard.

I mentioned the smell again, and the flooring guy humored me by testing the floor for moisture. It shouldn’t have had any, but the test showed a reading of about 40%. The linoleum needed to come out.

The workers found many puddles of dog urine. The glue and linoleum had been laid while the urine was still wet, four years prior! When ripped up, the floors were moist and had to dry before they could be treated. This was the source of the smell I KNEW still existed!

Getting to the bottom of the problem meant it could be fixed. My floors were sealed, new flooring laid, and my house no longer smells like urine. A solution was found. Whether we are fighting to have our bleeds acknowledged and treated or searching for answers to different issues entirely, the strategies are often the same. We must persist, even in the face of doubt. We can point to evidence we do have and search to find more documentation, propelling us toward resolution. Clues are sometimes found in places and ways we don’t expect.

Still, she persisted

No more smell! (Photo by G Shellye Horowitz)

Living my life as a woman with hemophilia, I have to photograph bleeds to “prove” they are happening. Doctors question my report of the number of bleeds I get each year. When a man reports the same answer, it likely isn’t questioned. I fight with doctors who try to “school me” by explaining that I am wrong and I couldn’t possibly have hemophilia. So I bury them in peer-reviewed medical journal articles that explain why my specific hemophilia variant causes people with mild hemophilia to bleed more frequently.

When I know a problem exists, I keep going until the issue is resolved. Sometimes this means discovering a cause that is not a bleed, which is a great step toward resolving the true root issue.

What I do not do is give up, even when questioned by the so-called professionals. I am the expert on my body. When my body is not working like it should be, it must be figured out. It is my job to continue on until it is sorted out. Similarly, I am also the expert on the home I live in. When I knew a smell remained, I tenaciously persisted until it was fully resolved.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.