My poor, dear husband Dwight found me whacking the toilet wildly with the plunger while sobbing because I could not get it to flush. He said (Guys this is NOT what you should say), “Settle down! What is wrong with you?!?” It did not end well.

Although most days I handle things pretty well, that day I had enough. We found out we had to have our boiler replaced for 15,000. At the same time, our plumbing was having issues. Plus, I had an US, an MRI, EMG, and several x-rays the day before. By the way, the pinky vein is not a pleasant place to put an IV… Still bruised from that one. All that testing for… nothing. No usable results other than tendon thickening. No solutions for pain other than physical therapy. Nothing.

I lost it.

In my head, I immediately started feeling bad for not being in control. For saying and doing things I would not normally do. But then I realized we all have a strenuous, exhausting, uphill battle with this syndrome. We all have to fight a disease that is barely understood. We all DESERVE to have those moments when we lose it. Because no one is perfect. Holding all those emotions in does more damage than letting them out.

So my toilet bore the brunt of this one. It will be just fine. Hahaha!

Once I calmed down, I, also, realized what a blessing my life has been. Not only do I have a diagnosis, I have a real chance to make a difference for the future. I have been given the honor of speaking at the Mayo Clinic’s event called Rare Disease: Mayo Clinic. I get to spread the word about Myhre Syndrome as well as educate physicians. My choir, the Twin Cities Women’s Choir will be involved as well. This would not have been possible without my diagnosis. And I cannot forget my worldwide network of “cousins” who fight along with me.

And my husband now knows to leave me alone when I am whacking the toilet with a plunger.