Always fight for your health and care.
Always fight for your rights as a patient and a human being.
Always fight to be listened to and taken seriously.
Always fight to be treated with respect and dignity.
I constantly have to remind myself of these things, because I know that nobody can advocate for me better than I can.
YOUR health and life matter! Don’t ever forget it. ❤️
This is an excerpt from a poem I love by David Whyte: “The Truelove”
If you wanted
to drown you could, because finally
after all the struggle
and all these years
you simply don’t want to
anymore
you’ve simply had enough
of drowning
and you want to live and you
want to love and you will
walk across any territory
and any darkness
however fluid and however
dangerous to take the
one hand you know
belongs in yours.
–David Whyte
For months I’ve been trying really hard to only eat whole foods as best as possible. No preservatives, chemicals, packaged crap, junk food, sugar, refined carbs, fast food, artificial sweeteners, “natural flavors,” caffeine, alcohol, or pop (sorry, soda). I’ve been drinking 99% water (a little real orange juice sometimes) out of a stainless steel water bottle (with stainless steel cap) or glass, not letting any of my food or beverages touch plastic, and I’ve been eating organic cage-free eggs, spinach, mushrooms, beans, other vegetables, organic hummus, nuts, and guzzling good olive oil like a maniac.
And FRUIT! Real fruit. I’ve noticed when eating real fruit instead of sugary carb junk, that the fruit tastes so much better than it used to. Is it psychological? Maybe. But I think my body and tastebuds are possibly rewarding me for giving them real food consistently. Oh, and berries. Lots of delicious blueberries, raspberries, and blackberries. Today, cherries!
I was recently interviewed for Marie Claire magazine about living with chronic pain and what a heavy financial toll it can take on a person. The article was just published yesterday! It’s a bit embarrassing (ok, a lot) having my personal debt and financial information flung into the open for all to see, but I think it’s an important issue to recognize and talk about.
Here’s the article if you’d like to check it out. My friend Leslie is also featured in it!
“The High Price of Living With Chronic Pain” by Alice Oglethorpe
Too many people who live with chronic illnesses are staggering under the stress and weight of years of outrageously expensive medical bills. It’s ridiculous and frankly unethical, in my opinion, that we live in a country where you have to decide between caring for your health or sinking into debt. I didn’t ask or choose to have this disease. I did nothing wrong to deserve it. So why am I and countless others constantly being punished by an unfair healthcare system? It’s more wealth care than health care, if you ask me.
Sadly, for the most part, sickness is an expensive, lucrative business in the United States. And we desperately and urgently need to change that.
P.S. I have paid off even more debt since I was interviewed for this article 😊
“My body is talking louder than I ever could.” –Susan Sontag
This poem by Emily Dickinson is beautiful and means a lot to me. Especially living through 2020/21. With pain and illness, RA also brings a lot of grief–in many different ways.
I measure every Grief I meet
With narrow, probing, Eyes —
I wonder if It weighs like Mine —
Or has an Easier size.
“It is spring again. The earth is like a child that knows poems by heart.”
–Rainer Maria Rilke
I just missed submitting a poem to a poetry challenge for Vocal by two minutes. I don’t write poetry, and I’ve always felt like I couldn’t do it. But I spent a lot of time on this, whether it’s crap or not. So, I might as well post it here. Sure, why not? The theme of the challenge was COLOR.
***
Me Without You
ice
white
bloodless, clear
a blizzard of tears
falling
into a whiteness too bright
where shadows don’t show
and a night deep blue
that’s too dark for a soul
me without you
This is an interesting and important read via Human Rights Watch.
An International Pandemic Treaty Should Center on Human Rights
“The right to health—Most of the world lacks covid-19 diagnostics, medicines, and vaccines. A new treaty should uphold the right to physical and mental health, and acknowledge the right of everyone to the benefits of scientific progress and its applications, including through intellectual property waivers.”
“The covid-19 pandemic starkly widened inequalities. We must seize this opportunity to reassert the principle of human equality, which must never be compromised; draw on lessons learned from the past year, and chart a better future.”
My good, old friend Thérèse sent me a video of Pieta’s “Darkness Into Light” annual charity event a bit ago from Ireland (link is at the bottom of this post). Pieta House is an Irish organization that helps with the prevention of suicide and self-harm and provides free mental health counseling to people in need. Thérèse was there in Kinsale last night with all of the beautiful lights in the dark. I wish I could’ve been there. I’m crying a bit after watching the video. I should have lit a candle myself last night, too.
