I don’t usually have an emotional attachment to the appliances in my home. In general I don’t think much about the refrigerator, toilet, or my kitchen table. Unless they break or smell bad. Then I have some emotions, but not good ones.
But I just got an air purifier and I’m definitely emotionally attached.
This isn’t a post about the air purifier though. I figured you’d want to know ahead of time that this is not a post hailing the low-intelligence robot performing air quality CPR in my living room. I’m sorry if you were here for that.
In all seriousness, wildfires and a medical crisis brought a community of people to this impoverished person’s nostrils. My people showed up and breathed life back into me. Literally.
Kind of. Continue reading My Search for Clean Air in a World Blowing Smoke | California on Fire →
FYI: if you purchase something through a link in this post I may receive a small commission, but it will not change the amount you pay for the item. Note: links to products sold on Amazon are not (currently) linked to an affiliate program.
While gift-giving is common for special occasions and during the holiday season, people living with Ankylosing Spondylitis (AS) could use a little extra love year-round. Here’s a long list of items I use almost daily (I really have used all these items recently)! The prices I included are as of the date this was written:
Hot or cold?
1. A heated mattress pad – this is my fall-through-spring bed staple item, and my cats love it too.
2. A moist heat heating pad. My favorite brand is Battle Creek, but be aware that their products get super hot!
3. A simple bean or rice microwave heating pad or sock. You can even make these at home using – you guessed it – a (clean) sock and a couple cups of rice. Please research this before making!
Things to wear
Continue reading 27 Gifts for Someone with Ankylosing Spondylitis →
I am a 30 year old who inherited a lifelong inflammatory disease called ankylosing spondylitis (AS). AS can cause the spine to fuse together from bone spurs and can affect organs and other joints. AS causes significant pain, to put it lightly.
I am also a former college athlete and marathoner. I know what it means to push through pain as an athlete. But I cannot push through the pain caused by my disease. Pushing through it causes the disease to progress and the pain to increase.
My main treatment is a drug made from living cells (the same class of drugs that treats many cancers); it helps slow the progression of my disease. Because this treatment is [finally!] working, it also reduces some of the worst symptoms. But AS is a severe disease with no cure, so even with this specialty drug I still have plenty of pain.
And, like millions of chronic pain patients who fight simply to survive daily, I’ve tried everything to control the pain. Continue reading Dear Prescription Opioid Debaters: →
You may look at my young, healthy-appearing body and ask, “You’re sick? Why don’t you suck it up and try harder? Why haven’t you tried XYZ?”
What you see is the poker face I’ve spent years creating, the one that allows me to pass in an able-bodied world so I don’t spend every moment defending my disease to faux-cure-evangelists.
What you don’t see is that I’m faking health to preserve my dignity, energy, and ability to accomplish whatever task it is I have to do before I collapse. Faking it is hard, but it’s easier than displaying my pain and then having to use more energy to defend my body’s permanent sickness.
What you don’t see are the grimaces I make when I’m in a safe place, when I allow myself to actually respond to the pain that is unrelenting, the pain that I do my best to ignore in public.
What you don’t see is the fear underlying my existence. Will I die young? Will I lose healthcare? What if my disability is denied? Will this new treatment work? Will I become homeless? Will I find a forever partner?
Continue reading What I Wish You Knew About Living with an Invisible Disease →