Don’t stop talking.

On an ice pack on the couch.

Some days, I feel like no one will ever understand my pain. It is so difficult to put into words the feeling of your entire body burning, as if you’re being torn apart limb by limb, every muscle screaming head to toe in desperation. I just want it to end most days. That’s the ugly truth. The internet, as terrible as it is sometimes, is a lifeline to people who exist this way. I’m thankful for the advocates out there who still find enough words to speak out when the rest of us are too tired to do so. I’m not entirely alone in this misery, even though it seems that way when I’m feeling my worst.

Your voice matters more than you can imagine, so please keep talking about it. Being heard and treated with empathy and kindness is the only hope some of us have left.

I'm a Burrito

I'm too tired to live, so I've decided to be a burrito this week. I don't have much of a choice. My spoons, as they say, are few. The weather is a big factor, but life in general is just plain exhausting these days. There's plenty that I wish I could do, but it'll have to wait. I have Internal Medicine on Monday. I'll give a health update after test results and such. Back to my blankie until then.

If you're wondering how things are going...

On top of HKPP, sleep deprivation, kidney stones, and the rest of the crap I usually deal with, I have a doozy of an upper respiratory infection at the moment. There is so much that I would like to do, but even getting out of bed to sit up in a chair seems like too much to ask this week. Thanks, Life.

I'll have a less cranky update when I am functional again, someday.

NOTHING.

The fact that there are people out there who think they have the answer to my ailments, and that I am simply choosing not to comply - as if systemic disease is curable with your magic potions and notions - but for some insane reason I would rather be seriously ill, in severe pain, and debilitated every day of my life - is maddening beyond words.

Go take several seats. You know nothing.