“I’m Not Lazy:” Talking About Arthritis Fatigue
One of the biggest frustrations of living with arthritis — especially autoimmune arthritis — is the fatigue. It’s not just tired, it is a crushing exhaustion that does not get relief from rest. It’s a constant challenge to understand it, find ways cope with it, as well as dealing with the perceptions and the stigma…
10 Things to Try if Wearing a Bra Hurts Because of Rheumatoid Arthritis
I’ve been known to say that RA affects all areas of your life and do I ever mean all areas. Even something as simple as your underwear. Bras can be especially challenging. If you think about it, putting on a bra involves skill of a contortionist and when you have a chronic illness that affects…
Berserker Author with RA: An Interview with Erik Henry Vick
Settle in, my friends, you’re in for a treat! I somehow persuaded Erik Henry Vick, author extraordinaire with RA, to let me interview him. If you’re a regular reader of this website, you know I loved Errant Gods, the first book in his Blood of the Isir series, also featured on my list of books…
How to Train Your Rheumatologist in Six Easy Steps
Congratulations on getting yourself a brand-new rheumatologist! Rheumatologists — or rheumies, as they are affectionately known in the community — can add so much value to living with any kind of arthritis. Like any other new relationship, though, you have to get used to each other, and your rheumatologist has to come to understand how…
Strategies for Surviving Celebrations (and Daily Life) with Chronic Illness
Updated November 20, 2021 We all have energy-sucking events and tasks in our lives. They can range from doing routine household chores to planning a big celebration, such as a family party or a wedding. When you have a chronic illness, approaching any of them can feel overwhelming. Where do you start? Will you have…
Medical PTSD and Long-Term Effects of Ventilator and Tracheostomy
Updated April, 2020 Rheumatologist: “how are you feeling? ICU PTSD can happen after such an experience.” Me: “I’m fine.” This conversation occurred two weeks after I’d been discharged from the hospital after my medical adventure. And the very next day, my GP brandished a pneumonia vaccine and I burst into tears, terrified that it would…
Hästens: The Best Sleep I’ve Ever Had
I have a new bed. I have never slept this well and it has reduced my chronic pain levels significantly. It is a blue checked Hästens bed. Earlier this year, I wrote about my quest for a new bed. To recap: every bed I found was too high, too hot, too smelly, or contained latex…
4 Ways to Use Respect and Dignity in Caregiving for Chronic Illness
When you have a chronic illness — or know someone who does — help can be part of your relationship. More commonly, the word caregiving is used when there is an element of caring for someone who has physical limitations, such as chronic illness. Giving and receiving care is much more than just the physical act…
What It Is Like To Wean Off a Tracheostomy
Updated December 6, 2020 Trigger warning: medical trauma. A quick recap: In March 2016, I got a bad flu, which developed into pneumonia. I ended up in the ICU in an induced coma and on a ventilator. Due to a bit of a mishap (understatement of the year) when being extubated, I had an emergency…
10 Things about What It Is Like To Be On a Ventilator
Updated December 6, 2020 Trigger warning: this post is about medical trauma. This post is a look at the experience of being on a ventilator from the point of view of the person on the receiving end of the tube. This happened when I had complications to the flu and ended up in the ICU.(side…
I Survived the ICU
Trigger warning: Medical trauma So, where was I? The last time I posted, I had the flu and was pretty miserable. It was the precursor to a roller coaster ride into a very dark place. The flu turned into pneumonia, which sent me to the hospital in the middle of March. There was a trip…
With and Without: Comparing Rheumatoid Arthritis and Fibromyalgia Pain
Updated June 16, 2021 Explaining the difference between rheumatoid arthritis (RA) pain and fibromyalgia pain isn’t easy. Articulating what pain feels like is extremely difficult to begin with, adding an attempt to differentiate different kinds of pain is even more of a challenge. I have both RA and Fibro, the latter adding on to the…