I’ve been intending to get the paperwork done for a handicap hang tag for the car for a while now. Over a year actually. My husband took the initiative to help me get it done. We dropped the paperwork off and I promptly forgot about it. We’ve lived without it this long so it frankly slipped my brain-fog-addled mind. And then today it came. It’s been a week. A WEEK!

My first reaction was just pure awe. I had no idea that our state’s bureaucracy was capable of functioning that quickly. I said the niceties about it that I’m supposed to say. This will help. And I found immediately excusing myself for needing it before even using it. “I won’t use it all the time.” And, “I’ll only use it when it can’t be helped.”

Continue reading →

Welcome!

If you’ve found my little haven on the web, welcome to this wild ride. I started this blog years ago when I was a healthy woman. Looking back at my posts I find them trite and silly. I had to take them down. They were the words of a woman with a skewed perspective of what it means to be happy and too much time on her hands. I utterly took for granted the blessings in my life. I was concerned with material happiness. I was short-sighted and didn’t realize how quickly life can hand you a different bag to carry. Getting sick has changed all that.

Until a couple years ago I was a normal, healthy woman enjoying life. In fact, I was the healthiest I’d been in years. Though I’d battled a weight problem for a while, I’d finally managed to lose 70+ lbs. I was exercising every day and eating well. My husband and I were getting ready for a trip abroad to Prague, a city that had been at the top of my bucket list. We were trying to start a family. Life was good. I was in an amazing place.

And then I got sick. I got on the plane to Prague a healthy woman. I got off the plane a sick one. At least that’s what we thought happened (turns out I’d actually been sick for years, just not obviously so). Within 48 hours I was an absolute mess. I cannot explain how scary it is to be in a country where you do not know the medical system with a disease that is not easily diagnose-able. My husband and I bought emergency tickets and flew back home. Once we got here, we entered the whirlwind that is the last 2+ years of my life. Doctor after doctor, treatment after side effect. With very few answers. I just got sicker and sicker until I was completely bedridden. There have been periods of remission. And periods where I walk with a cane or walker. There have been times of joy despite it all, and times I just want to fade away.

So here I am, in tears as I write this, looking back at the journey so far. I want to share what’s happened and what’s to come. My story, although rare, is still way too common. There are other people out there like me. Desperate for a diagnosis, a treatment, and quality of life. People with from chronic and/or invisible illness are often forgotten by society, our peers, and even our family and friends. We are invalidated by the medical system that’s supposed to help up. We are isolated and suffering. I hope that by being honest and vulnerable about this journey, another person suffering feels less alone. And if we’re very lucky, perhaps my own research and experiences can help another Spoonie get a step closer to answers in their own journey.

I want this to be a place where I can just be wholly, honestly me. There will be negative thoughts and embracing of joy. I promise to be as real and raw as I can be. In a social media world, where we only see the top 1% of good parts of a person’s life, I don’t believe it does anyone any good to be fake about their struggles and triumphs.