The Accidental Introvert

One thing people don’t really talk about is the slow inevitable slide of progressive illness. I’ve been sick for about 16 years now, disabled for 5, and for most of that time people in my life keep asking me if I feel better. I will never feel better. At each stage of my particular disease I have felt the best I will ever feel again because I have a progressive disease that is killing me very,…

If you have a chronic illness you know how often a doctor asks you to keep track of your symptoms, medication side effects, diet, exercise, lifestyle changes, etc. I have always hated it. I find it boring and depressing. Focusing on my symptoms reminds me I am sick, focusing on my pain makes it hurt more. So I have been really bad at it. Which doesn’t help the doctors do their job better. So I…

Can I just point out that I live in quite possibly the worst place a person with barometric pressure sensitivity can live? Our weatherperson gives out Spoonie warnings because the pressures in the valley are so intense. I live in Denver, in a valley, in front of a huge mountain range. Like a dumbass. A dumbass with a never-ending headache from hell. Especially the last month. Or three months.…

That’s where I ended up. After 15 years of tests, medication failures,  painful treatments, expensive doctors. I ended up with a diagnosis science poorly understands and a palliative care team. And a choice to keep going anyway. I am in pain every day. All day every day. Sometimes the pain is only as distracting as a well behaved toddler while you’re at the grocery store. It demands my…

Getting better. The slow inevitable decline of a progressive illness is hard to quantify especially when the illness in question gives you “good days” and “bad days” to begin with. It can be difficult to notice the fact that it takes longer and longer to recover from the flu, or infusions, or too much physical activity. The bounce back doesn’t dramatically swing from bouncy to flat. It’s more…

I pat my pockets absently for the item I’ve forgotten, rummaging through the detritus on the desk, the overflowing “in case of” items in my bag. I’m missing something. I go back upstairs to see if I left it there but nothing catches the faint haunting thought in my brain. Wallet yes, keys yes, gloves yes. What is it? I check the bathroom as I often leave things sitting on the windowsill or…

I’m scared. Despite being reassured that this disease doesn’t directly cause muscle weakness I’m seeing post after post about my fellow SFNers losing muscle strength. I have days when my legs feel weak and wobbly, when my hands would rather throw things than grasp them. I don’t want to lose my mobility. So I’m going to get moving. Every day. Regardless of how I feel I’m going to move. I have…

An attempt to withdraw from knee jerk capitalist self-soothing. They work us long, hard hours at less than generous wages so when we have free time we spend our money on things that feel like luxuries to reduce our stress, anxiety, and depression. What we need is time together, time in nature, time creating things, and so much less stuff. Not a popular opinion. As a woman whose Mother has had…

I’m at some remove, being in Colorado where the full force of Trump’s attack on our freedoms hasn’t truly begun but we’re just waiting. As the untrained, uneducated, and at times unhinged thugs he hired as his gestapo grow increasingly willing to murder American citizens in public and on camera there is a tightness in the air around us. Don’t read the comments could be a prayer as well. If you…

I’ve made 32 sock cats and one chicken. Seven went to Off The Bottle for sale. The rest went to neighbors who couldn’t afford gifts for their children because of the ill advised choices of 47. The Golden Whisker Society The Golden Whisker Society Mom is writing a backstory for the website. I’ve created adoption certificates. I can’t fix the government. I can’t stop the atrocities being…

The sock cats. They’ve taken over. They are all I think and dream and do. Each one is it’s own unique little critter. Each one is waiting for it’s own home. I have a website, I have adoption certificates, I have a plan. I also have a bunch of neighbors on my Denver Mutual Aid site that can’t afford to get their kids anything for the holidays. So this season I am making cats, putting cats with…

I’ve fallen into the trash panda handmade holidays. If I can’t use it for it’s original purpose anymore but I can keep it out of a landfill I’m making decorations or gifts out of it. All of these involved hot glue, bamboo toilet paper tubes (they are nicer than regular ones) and fabric scraps, broken ornament scraps, or cardboard scraps. I even used some parfait jars! These use clean socks…

I’m done with being treated like no matter what they do we will suck it up and buy their crap because we have to. We don’t. This year I am not putting a single dollar into a billionaire’s pocket. Not one. I’ve already found stunning and unusual earrings for a friend of mine, made by an artist on Etsy, and they were under $10. Best of all, they inspired me to try my hand at some quilled…

Nearly 20 years into the onset of my disease I feel accomplished to be here. It’s been a long, difficult road with pain my most stalwart companion. However, as I enter the second half of my life I want to remember some of my most important lessons from the first half. Spend time with the people you love when you can. Make time to be alone. Create strange, wonderful, silly things. Make…