The Sweet Kale #salad at costco is soooo good. Other than at @itsdanielak_ 's wedding, I've never really enjoyed a salad until this one. So for all you greens-adverse spoonies out there, give this one a try! It's delightfully crunchy and has kale, green cabbage, broccoli, brussels sprouts, chicory, roasted pumpkin seeds and dried cranberries. Thanks to @cashorcheque for introducing me to it!
When the medical system fails us, #spoonies who can get access to it turn to #alternativemedicine , like #naturopathy , #acupuncture , and #tcm . Just because the doctors can't figure out what's going on doesn't mean we can give up on finding a treatment that works- to do so would almost mean giving up on life. Because when your ability to function is so low, any little push is a treasure.
One of my best friends @cashorcheque is taking a disability studies course, and she has amazing skills at clearly and succinctly summing up big ideas: Oliver (1990) notes that "doctors are trained to diagnose, treat, and cure illnesses, not to alleviate social conditions or circumstances." Elysse then said, "What happens when doctors are the gatekeepers to legitimisation and social acceptance of contested illness or disability?" Well, we know what happens. People with contested illness are viewed as faking their symptoms to get out of work and other responsibilities. Because we are not legitimated through the medical gaze, we are often made ineligible for treatment, support services, and disability benefits. Often our friends and family view us an ineligible for social supports and are prompted only to provide "tough love."
My sleep has been really fragmented since the change of seasons, so I'm headed to acupuncture this afternoon. While acupuncture has not been a panacea for my fatigue, it has really improved the quality of my sleep. When the medical treatments don't work (or the docs don't think you need it) we often turn to alternative practices. I am lucky enough that my parents pay for it, as non-medical services are not covered under Ontario healthcare.
It's flannel weather in Toronto, which means it's time for spoonies to layer up. Keep warm out there! Thanks to sister @paper_paradigm for this newold flannel.
Happy Thanksgiving! This year I am thankful for so much: for good friends (new and old), my supportive family, and that my grandparents are reunited in heaven. I'm thankful for the rheumatology referral, for the Canadian health-care system (despite its faults) and for you, my Instagram family, who have turned a lonely journey into a community of strong-willed spoonies.
Blackboard resting in the grass that reads "Change isn't always nice." As an Asian female, I have been exhorted to be "nice" my entire life. There are times when you MUST subvert the way things are, when change is a necessity to being able to exist, for example, as a chronically ill person in a society that only understands short-term illness. Change isn't always nice. It isn't always pleasant or easy- it's rarely easy. But it is a part of growing as individuals and as a community of human beings.
Essential supplies for a trip to suburbia for (Canadian) Thanksgiving: daily meds, PRN meds, notebook, disability studies book, makeup, and my transit card. I am so excited to talk to my parents about the referral. The clinic I've been referred to has specialists in idiopathic presentations! THEIR SPECIALTY IS MYSTERY SPOONIES!!!
"I got a referral!" Yesterday the clinic called me back to go over an xray report that had been delayed, and in light of the xrays the doc reinterpreted the blood test results and sent in a referral to a rheumatology clinic who can assess all the way from arthritis or autoimmune to ME/CFS. I am ecstatic! I am full of hope! Finally, finally the tests showed something worth investigating. Finally someone believed the tests reflected some modicum of how small my life has become. I am trying to push away from this trend in only believing someone is sick once they have a diagnosis, but I cannot deny that is still the reality. Despite the fact that it takes an average of four years before autoimmune disease is accurately diagnosed, let alone contested illnesses like fibro and ME/CFS. That's rather a long time to dismiss someone, isn't it?
The test results came back normal, and the doctor was not remotely interested in further investigating why a 27-year-old has painful joints after 1.5h at a book festival. Halfway home I sat down and contemplated how bad it has to be before I get help, and how deeply sick people fall into the cracks.
Being regular-people sick is almost a relief. Everyone understands a nasty cough- no one would consider dismissing my phlegmmy voice.
"Hold your breath. Don't breathe..." whirrrrMOOPwhirrr "Breathe!" I am so grateful to live in Canada, where almost all lab tests and imaging are covered under single-payer healthcare. Where my anxieties can just be about what will (or won't) show on the x-rays and not about how to pay for it.
I never played football or frisbee on the quad. What energy I had was saved for the bare minimum of school and housekeeping, with no leftovers for playing catch or going dancing. I didn't have a very strenuous weekend, but halfway through the book festival yesterday my body broke out in pain. It took hours to get home because I kept having to rest. I dragged myself to the clinic today to show the doctors what it's like. By the time I got to the pharmacy I was holding back tears, and I had to rest in a corner after getting blood taken before walking home. Where I finally burst out sobbing in the empty elevator. Ah, to be 27 and young, right??
"Spend money to save energy, or spend energy to save money." But what do you do when you have very little of either? You do without. When you don't have energy to earn money, and you can't replace money with energy, you do without because THERE IS NO OTHER OPTION. It is not a choice. No one would rather not work and have nothing. This is a reality of chronic illness.
Sometimes you just need to put your feet up (on a chair with a heat pad under your back.) Chronic illness chalk art is back tomorrow!
Get thee to a park! I feel like poop today but I know I'll feel better at the park. Somehow, I always end up on the floor in the process of leaving the apartment. Apply...willpower...go...outside...