I started to write a blog about what I have been up to for the last 6 months. It felt stilted and not my style. The truth is I have been overwhelmed and running on empty much of the time. Writing has not been a priority for me.

Why am I writing now? I finally got my sleep to a manageable state. I found an amazing sleep doctor who listened to me. He ran 3d mask fitting software for my CPAP mask. The one they had previously recommended was 3 sizes too big. He told me my meds were making the restless leg syndrome worse because I had been on them too long. He tested my iron levels and found out it was low. One of the meds I was taking was making my oxygenation levels even worse. We are slowly straightening all this out. I am coming back to life. I have a smidgeon of energy again.

In the last 7-8 months, a lot has been going on behind the scenes. We finished the first ever Patient and Family Handbook for Myhre (!!!!). I spoke to 300 doctors at Mayo about my diagnostic odyssey which became an emotionally charged moment when I told them all how they misdiagnosed me years ago. This led to a ripple effect of me not getting an actual diagnosis for another 25 years. In choir, I volunteered to be section leader. All while battling doctor appointments and concerning new diagnoses.

I, now, have a scarred trachea from my last surgery which is being monitored closely. My diabetes has been swinging from low to high and back to low again for no valid reason. My rib cage and breastbone are thickening to the point of starting to impede my breathing. And I HURT. EVERYWHERE. But I am here. Fighting on. Luna, the puppy, is keeping me moving.

As people who live with the effects of Myhre day in and day out, I think sometimes we forget how draining it can be. We forget to take care of ourselves in the midst of our struggles. I did. My breaking point happened late one night. I could not sleep. My legs would not stop moving. My spine, rib cage, ankle, and knee hurt. I felt anger, disheartened, and defeated.

The next morning, I emailed my doctor. I told her how I was feeling. I told her about the medical burnout from too many appointments, too few answers, and too many things to monitor like an insulin pump, Dexcom, medications which are growing into a beast of their own, and just existing. The impact of losing 3 children, the uncertainty of my health, and the lack of answers just seemed to be too much of a burden to bear.

Nothing changed but just the act of sharing with someone helped me to realize I am not alone. I don’t need to be perfect at managing my disease. This is hard stuff.

One of the topics I will be touching on in the near future is our mental health. What can we do to improve it? What do we need? How can we get our needs met? All questions to ponder. Just know you are not alone in your struggles. We are all walking along side you, feeling the same emotions and helplessness.