I sit here in silence. Well, not really silence. I hear ringing that can range from a low roar to a rushing sound to whistling depending on how tired I am. 

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.

My poor, dear husband Dwight found me whacking the toilet wildly with the plunger while sobbing because I could not get it to flush…..

I know all of you have heard very little from me this summer. It has been a hard time.

A little over a week ago, I got the dreaded news. My husband Dwight was COVID positive. Neither of us knew where nor now he picked it up, but here it was. I started sanitizing like a mad woman with sprays and wipes.

Today is my 52nd birthday. I cannot believe I am saying that. I have a life full of love and laughter that I could never have imagined before. The despair and loneliness is gone because of my diagnosis. Yes. Life is uncertain. I don’t know how long I will have on this planet or how well I will be functioning. But I am HERE! I know who the adversary is and I can fight back with all my might.

I want to make sure to enjoy life to the fullest for as long as I can. Goal one has been met – I joined a choir. Goal two is a road trip. I don’t care where. Just a road trip. Goal three is spending as much time as I can with my friends and family just enjoying life. I don’t want the moon. I just want simple things.

I am back! Missing a few body parts but still here! LOL!!! I want to talk about perspective. Going in to this surgery, I heard many people talk about how hard it was to recover from, how painful it was, and how it changed them. I am not doubting this is true. They have a different perspective than me.

Patti talks us through her sugery prep and the support she has from her husband, including the best post-surgery outfit!

When is it enough? When have we seen all the doctors we need to see, added all the meds we need to add, had all the surgeries we need to have, and done all that we can for our bodies?

Fifteen months ago on January 28, 2021, I left work for the last time. At the time, I intended to take 12 weeks off for surgical recovery and then go right back at it. We, my employers and me as part of an emergency physician’s group, were fighting COVID. They needed me. I would not let a little thing like Myhre Syndrome get in my way!

I meant to write my blog on Friday. I really did. I sat in front of the computer and typed nothing worthy of writing. It was not happening. That night, I fell asleep at 6:30. SIX THIRTY!!!! I slept the whole night with one snack awakening at 11pm, until 8:30 Saturday morning. No wonder I could not write!

My beauty is my difference. My strength is my ability to see where I need help and ask for it. My warrior comes from facing this daily and still fighting on. Please do not feel you are the only one struggling.

Nothing about this syndrome is easy from the multiple systems affected to the number of doctor appointments to the daily strain of living with all this. Whether you have Myhre’s or love someone with it, it is not for faint of heart. Keep your chin up and keep going. We got this!

Back in the 70’s and 80’s unless something was falling off or broken, kids did not see the doctor. My parents adhered to this philosophy. My body was always different. Cartwheels were an impossibility when your wrists do not bend. But I was alive, breathing, and nothing was falling off. No need to investigate further.

Last week was brutal. No other way to describe it. Between early morning appointments, conflicting doctors, and fighting long term disability, I needed to have a Patti Pity Party for a few days. This week, I want to talk about how I pull myself out of this funk. It is not always easy.

Do you remember those Magic 8 Balls from the 1970s and 80s? All you had to do was shake it and an answer would pop up for your question. Yes. Johnny likes me. Or no. He does not. LOL! Ever wish there was one for Myhre syndrome? I feel the weight of my own health pressing down on my shoulders with very few definitive answers.

I am angry. How often are we too afraid to say those words or feel that emotion? This last week has been a frustrating cycle of medical bureaucracy for both me and my friend Holli who has Myhre's as well.