I have been writing enumerations of this blog post in my head all day now. That's how this works. My head is so busy all the time with ideas, with stories, with work that needs to be done, that there is hardly ever a moment I can just stop and be silent. To hear the words inside my own head. But it is only when I can be quiet that they come. The words come. It has always been this way. The noise inside my head. Writing it down is the only thing that has ever helped it. So I have written. From the time I could pen to paper. Sometimes I draw it too, but mostly I write. When I was younger, I had ample time to listen to the noise and write it all down. Try to make sense of it. Fiction, non-fiction, page and pages and pages of stories. Overflow boxes, filling the attic in my childhood home, the home where I now live.
It doesn't work that way anymore. There is too much noise these days. It's been that way for a while. But these are the good noises. And they have been good for a long while now. The only other times it has been this good is when I use to dance. When the noises were so good they made music. And music made me close my eyes and see dance.
I was able to do that again today.
On a flight. Yes on a plane. Yes I do travel a lot for work.
But this post isn't about that.
This post is about the fact that I'm sick. Like really sick.
No, not like the flu. But, yes I did just have that. But it only started after a day of uncontrolled body spasms, pain that left me in tears, and a fever that held my body over a 102 degrees for more than half a day.
Yes I'm coughing. That's new. But the joint, back, neck, hip, muscle, tendon, and bone pain? That's not.
I hurt everywhere. I realized this at a doctor ordered massage on Tuesday when my amazing masseur, Amy, asked "Where does it hurt today?" The funny thing was that I said I felt pretty good, and I guess I did feel pretty considering it was my first day getting outside after a 4 day fever. And then she started to give me a massage. My calves. That is the only part that didn't hurt.
I cannot remember the last time I worked out consistently. There were the two kind of half hearted days in San Antonio...so two weeks ago? I lost several days in that dizzy fuzzy haze that only pain can trap you in. I'm looking at all the women I admire on Instagram as fitness inspirations and feeling like a complete fraud. I change my bio to reflect the recent changes in my personal fitness abilities.
I decide I've always been a better writer than Instagram persona.
I've lost weight (which I couldn't give a shit about) because I have no appetite. To add insult to injury, I am also losing muscle. My best butt leggings are loose.
I had told myself I would say something here when I had an answer. I have <INSERT INCURABLE INFLAMMATORY DISEASE HERE>. But even after weeks of calling for medical records, so many doctors appointments I've lost count, getting my health insurance, faxing ridiculous paperwork (who the F*CK still uses a fax machine), and giving blood like I'm banking on it: I still don't have any answers.
It's not lupus, hashimoto's, MS, rheumatoid arthritis or vasculitis. Or it maybe is all of these things. I am also studying up on the frightening and damning affects of a vaccine that had terrible side affects for young girls, a vaccine I had three rounds of at ages 13 & 14, which is coincidently (or not) the onset time of my pain. I've had tests on tests on tests. I'm now to the point of seeking out specialists.
I've been told that these things take time. But I've been feeling this way since last October/the last 12 years of my life. Most importantly I've been told that even though MDs can possibly help with a diagnosis, traditional medicine will not be where I will find the answers to living with a chronic illness.
All I know is I am sick right now.
I have only had one test turn up a clue, although the spreading markings on my hands may be another. A general screening for inflammation. The results were suppose to range from 1 to 3, with 3 being a high marker of inflammation.
My result was 36.87
Some days I cannot get out of bed. My energy has become my most precious commodity, although my time is pretty valuable these days as well.
Please know I didn't know how to say this.
But a piece of me had to say it here. This is the only way I can make sense of it. I can't keep going around telling people one by one. Some of you already know. Some of my dearest friends may have intuitively known.
This is why I have been so distant. Pain is a scary thing. I don't want to worry people or rain on their parade.
Please know I love you. That I didn't want to hurt you by telling you. That I'm sorry this took so long to tell you. And that I am sorry if this doesn't seem like a personal way to say this.
But this is how I needed to tell this chapter of my story.
And this is my story. And you need to believe it will have a beautiful ending. Even with all of this, I am the happiest I've ever been. I've decided to take my writing more seriously. To actually be fearless instead of just talking about it. So...yes, this blog will be changing a bit.
I have so much love in my life. And I have a lot to learn.
But I will also continue to share in hopes that it might reach someone else that needs to hear it. I have no idea what will happen next.
But I just needed to say this. I just had to get it written down.