My latest article for RheumatoidArthritis.net was just published! It’s about a song I love, “Rebel Heart,” by Swedish band and sister duo, First Aid Kit. The article also emphasizes how much music is an important form of self-care for me when dealing with the physical and emotional pain of living with RA.
I hope you enjoy both the article and the song!
“Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”
—C.S. Lewis (1898-1963)
My latest article for RheumatoidArthritis.net was just published on Valentine’s Day, coincidentally (probably not a coincidence?):
“Dating: When to Tell or Not to Tell?”
In the article I write about the anxieties of disclosing you have RA with the people in your life, and especially your dating partners. There’s always a fear of negative judgment and rejection when it comes to revealing that you have a chronic, painful disease. In a perfect world there shouldn’t be, but in my own life and experiences, I have definitely been rejected and dumped because I have RA. This is appalling and disgusting, but it is a reality, sadly.
There is also a lot of anxiety associated with when and how to tell people, especially potential romantic partners, that you have RA. Should you tell? When should you tell? How should you talk about it? When is too soon? When is the “right” time to do it? The questions swirl around in your brain as you grapple with what’s the best thing to do. “He won’t want to be with a sick person,” you tell yourself. “My life of pain and sickness will be too much for him to handle.” The negative possible scenarios can give you panic attacks while questioning yourself, your RA, and your life.
Thankfully, when I finally disclosed to the person I’m currently dating that I have RA, my fear of being dumped for having a disease I had no control over getting, basically vanished. He was kind, understanding, empathetic, and supportive. And for this, I’m very grateful.
However, we all must remind ourselves that if anybody rejects us because we have RA, that person is not worthy of us anyway. We should be respected, honored, and even admired for our continual strength, courage, and resilience.
Remember, you are amazing and a fighter and deserve more than anything to be accepted and loved for who you are. If someone isn’t willing to do that, then it shows the (bad) kind of person he/she/they are–not you. We all do incredible things and overcome huge, insurmountable challenges on a daily basis.
Honor, respect, and love us. We deserve it.
Today’s breakfast: Two organic, cage-free hardboiled eggs, pumpkin seeds mixed with a little extra-virgin olive oil, salt, fresh-cracked pepper; fresh orange slices
I admit that lately I have fallen off the whole foods/healthy eating bandwagon, after being very diligent about it for many months. This fall, I began falling into some of my old eating patterns: refined carbs, processed/packaged foods, dairy, red meat, caffeine, alcohol, and a lot of snacky “junk.” During the last couple weeks, however, I’ve decided to make a conscious effort to turn things around again and get back to healthy, whole food nutrition, and ditch the refined carbs, sugar, booze, coffee, and processed crap that I believe is causing my RA to flare up again.
It’s not easy to eat a diet like this and one that is so far from the norm you grew up with and have eaten for decades. However, I have seen noticeable positive results, physically and mentally, when I kick sugar and chemicals to the curb. So, here’s to a near year and a renewed dedication to fueling my body and mind with real food and nutrients that are good for me–in so many ways!
If anybody has any good recipes they’d like to share, please do! I’m not a great cook and I do get bored with making variations of the same egg/veggie/chicken breast scrambles.
Recently published for RheumatoidArthritis.net: “RA-United!”
This is a little story of an RA-related friendship break-up with a happy ending, I’m very grateful to say. Thank you for your forgiveness, kindness, and open heart, Mara. I miss you!
“How stupid pain is…pain sent its dull, insistent message upstairs to the brain. Pain was like a siren. Pleasure never worked that way.”
–Charles Baxter, “There’s Something I Want You to Do”
“Behold, your body includes and is the meaning, the main concern, and includes and is the soul; Whoever you are, how superb and how divine is your body, or any part of it!“
—Walt Whitman (1819-1892)
You told me once I have a rebel heart
I don’t know if that’s true
But I believe you saw something in me that lives inside you too
Tell me why do I keep trying
To be someone I’ll never be
I keep seeing her in everyone
Everyone but me
After over a year of severe anxiety, paranoia, frantic hand-washing and sanitizing, masking, social distancing, lockdowns, self-quarantining, and three vaccinations–Covid-19 finally got me. I’m on Day 11 of being sick with symptoms: a strange constant throbbing headache, low-grade fever, major congestion in my nose and head, scratchy/sore throat, fatigue, body aches, junk running down the back of my throat. Luckily, I’m not coughing so I think (hope) my lungs are OK. I have a little cough here and there due to all of the drainage in my throat, but it’s barely anything. And I’m not having any problems breathing. But this awful throbbing, full, sickish feeling in my head is driving me crazy. Tylenol isn’t doing much to help it.
I still can’t believe that I finally got it, even though I know I shouldn’t be that surprised. Minnesota’s cases and hospitalizations right now are shockingly high. Thanksgiving week and maybe the week before, I believe, we were the worst state in the entire country, which blows my mind. I asked a doctor recently why, and she said it’s because of all of the unvaccinated people who are mostly outside of the Twin Cities metro area. I looked at the case numbers and statistics again today for Minnesota, and only 62% of all people here are fully vaccinated. That’s ridiculous and not nearly enough. This infuriates me, but I won’t go into that right now.
Minnesota senator (my senator) Amy Klobuchar posted this on her Twitter feed two days ago. I just reposted it on my RA Instagram page (@inflamed.ra) with this comment:
Thank you to my senator for saying this! It’s not just medication but ALL medical care that needs to be affordable yet still of high quality: doctor’s visits, lab work, diagnostic tests, ER care, surgeries, mental health care, dental care, vision care, preventative care, physical therapy, integrative/functional medicine care…and anything else that the patient needs to be as healthy as possible and live a normal life as much as possible.
I stand by these statements.
Inflamed: Living with Rheumatoid Arthritis 