It has been a rough few weeks. Don’t get me wrong, I have had some amazing experiences and created some fabulous core memories. I am talking about physically, emotionally, and mentally the past few weeks have been very trying.

I was extremely fortunate when I first got home from the hospital, despite my extreme discomfort and shortness of breath, I was not in physical pain. Unfortunately I can no longer say the same. I am in constant back pain and have a headache strong enough to effect everything about 60% of the time.  I do not believe I have had a rejuvenative night of sleep since mid-August. Added to that, I can’t seem to nap anymore even when I’m fatigued in the middle of the day.

This is coupled with the fact that the nights are cold and winter is coming. The cold has a significant effect on my breathing, and also can cause my back to seize up. I also know it’s just a matter of time before my Raynaud’s causes significant pain in my hands and feet. I will literally start planning my days around the temperatures and climates that I must endure. That sounds more dramatic than it is, but things like a grocery store, a doctor’s office, or a library –  I am always thinking about the temperature inside and what I have to wear to endure outside.

I am doing my best to stay focused on the things that I am looking forward to. That has always been a huge motivator for me, but now that anticipation is heightened as there are many days where I can only manage the energy to do one thing. That one thing is extremely special to me. First up is my long anticipated trip to see the Righteous Blackguards at the Lady of the Lakes Renaissance Faire. Mom and I snagged $99 airfare round trip from Atlantic City, and Spirit has been super easy to work with for my portable oxygen concentrator and checking my wheelchair for free.

I am admittedly very nervous about how I will get from the parking lot to the stage where the Blackguards are performing as the faire is in a beautiful, rustic setting in the woods, so a power chair is out and I do believe it is beyond my capacity to walk of my own accord. But as I see it, I’ve got a week and a half to figure that part out.

The other thing I am most looking forward to is reuniting with dear friends. I have been blessed to have quality time sipping tea and reconnecting with some of the most genuine and authentic humans that I have been fortunate to know, many of which I have not seen in a decade or more. As someone who values human connection so significantly, these reunions have made my heart soar. I sincerely hope that sharing my journey and letting the world know what I am going through currently is an avenue to continue these reunions and bring meaning and joy to my life. If YOU are someone who would love a catch up and porch sitting as much as I, please message me and let’s get something on our calendar so I can ANTICIPATE our reunion!