Life Has Not Forgotten You

“Don’t be frightened, dear friend, if a sadness confronts you larger than any you have ever known, casting its shadow over all you do. You must think that something is happening within you, and remember that life has not forgotten you; it holds you in its hand and will not let you fall. Why would you want to exclude from your life any uneasiness, any pain, any depression, since you don’t know what work they are accomplishing within you?”

–Rainer Maria Rilke, Letters to a Young Poet

The Austrian poet and novelist Rainer Maria Rilke has so many wonderful quotes from the letters he wrote to a young aspiring poet, Franz Xaver Kappus, from 1902-1908. In the letters, he gives Kappus thoughtful advice about how a poet should feel and experience life–especially in terms of love, truth, and art.

The above quote resonates with me, especially lately, as I’ve been struggling with a lot of anxiety, fear, depression, and confusion about things going on in my life right now. Pain (physical and emotional) is a massive burden to carry, so why wouldn’t I want to remove it from my life?

There are many days when I silently beg God or someone to take away my pain, even if just for a short time. Reading this quote again, however, reminds me that maybe there is a good reason for such suffering in the first place. I don’t have a crystal ball, of course (I wish!), and I do try to remain hopeful that there is some higher, positive reason for my pain. Can pain be good?

Is pain making me a stronger, more empathetic person? I hope so. Has it led to developing friendships and other positive relationships and connections with others? Yes. Has living with chronic pain given me opportunities that I otherwise wouldn’t have had if I didn’t have RA? Absolutely.

But is the pain worth it? Well…I’m tempted to say, “No. Give me back my healthy body, please!” Sadly, life and RA don’t work that way, so I’m stuck with this debilitating disease until a cure is found. But I’m not stuck when it comes to how I handle and react to my pain, even if it feels like I’ve fallen into a deep, dark hole that I can’t crawl out of again.

Just hearing someone else say: “Life has not forgotten you; it holds you in its hand and will not let you fall.” gives me a bit of quiet comfort and encouragement that I very much need now and always.

I’m sitting on the soft, green grass now on the edge of beautiful Lake Harriet in South Minneapolis, watching the sailboats bob and twirl back and forth on the blue, rippled water. A cool breeze blows over me as the sun shines warmly upon my hair, bare legs and feet. I think I even spot Minnesota’s state bird, the loon, with its black head and body gliding between a couple of sailboats. It’s summer. Things are OK. Things will be OK. Happiness and (mostly) pain-free days will come again, even if this seems impossible right now. Life hasn’t forgotten me and I do not want to forget to live my life.

You Are Not a Burden

_{Illustration: Stephen Andreo}

“Having extra needs does not make you too difficult, too time-consuming, but worthy of compassion and love.” –Chanel Miller

Here’s my latest article for RheumatoidArthritis.net–published today!

Not “Too Difficult”

People who live with extra needs, such as having RA, often struggle with feeling like they’re a burden to their family and friends — and to everyone. They constantly worry that they’re “too much” for people because of their chronic illnesses and chronic pain: financially, physically, and emotionally. And they often work and fight really hard to mask their pain and illness in order to not be a burden.

This isn’t fair, of course, because nobody chooses to have this painful disease, and I believe that people are invariably doing the best they can in life. But when you live with an “invisible illness” such as RA, it’s easy for others to not know or understand just how painful and debilitating RA can be. We who have RA want to be “normal” and productive members of our families, communities, and society. And we don’t want to burden anyone or feel like a burden or a pain because of our limitations and disabilities from the disease.

Cathedrals

_{Kölner Dom (Cologne Cathedral), Cologne, Germany – January 2023}

“From tiny experiences we build cathedrals.” -Orhan Pamuk

I apologize for how long it’s been since I’ve updated this blog, however a lot of “tiny” and pretty BIG experiences have happened to me in the last few months–especially since the beginning of the new year. A last-minute trip to celebrate New Year’s Eve with old friends in Cologne, Germany kicked off almost two months of a rollercoaster ride of truly wild and unexpected events.

Where to start? Well, firstly, I really love this quote from Turkish novelist Orhan Pamuk. It’s from an interview he did for The Paris Review: “Orhan Pamuk, The Art of Fiction No. 187.” My main interpretation of the quote is that it’s important to recognize and honor that all experiences in life – even tiny and seemingly insignificant ones – do have meaning and matter. I also feel it’s a message of encouragement and perseverance: keep getting up in the morning, keep moving forward, keep moving, keep trying, keep building. Great, beautiful things can be created and accomplished from tiny actions and moments.

This really speaks to me, especially right now, because I feel like I’m stuck in rut, desperately trying to claw my way out of a deep trench of frustration, anxiety, hopelessness, and confusion. And lately, these frustrations seem much worse than usual. I feel very overwhelmed.

But, there are so many “cathedrals” I want to build during the remainder of my life.

Heartbroken

_{Auntie Jean & me}

“Mental pain is less dramatic than physical pain, but it is more common and also more hard to bear. The frequent attempt to conceal mental pain increases the burden: it is easier to say “My tooth is aching” than to say “My heart is broken.”
-C.S. Lewis

My head is constantly throbbing; my right foot and ankle endure shooting, stabbing pain every day; the bursitis in my hips burns me when I try to sleep. But these things are nothing compared to the pain my heart and soul feel. My heart IS broken. 

My beloved Auntie Jean died October 10th after a short but horrific battle with cancer (probably ovarian, but it’s complicated). She was only 67 years old and it’s been a horrible shock to my entire family. My mother, one of her older sisters, is lost without her. Her kids and husband are grieving deeply. My sister, mom, and I have a sickening sadness in us that will not go away–ever, I’m guessing. Auntie Jean was a second mother to me and was always someone I could talk to about anything and everything.

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” -Khalil Gibran

Auntie Jean also understood what it was like to live and struggle with chronic pain. Ever since she was a kid, she suffered from chronic pain and endured numerous surgeries due to various health conditions. The cancer that destroyed her body was also unspeakably painful. Why she had to suffer from so much physical pain in her life, I don’t know. Why must any of us? I can’t believe she’s gone and if I stop and think about it too much (or even a little), I will start crying. The only thing I can find solace in right now is the fact that she is finally free from pain.

I love and miss you so much, my dear Auntie Jean.

RIP Jean Marie (Kolvig) Waldvogel
(8/3/1955 – 10/10/2022)

Chronic Clenching

_{Illustration: Health Union, LLC}

I have suffered from intensely painful, chronic tension headaches since shortly after I was diagnosed with RA 25 years ago. The jaw pain began approximately 15 years ago, I think. Lately, my jaw, head, and neck pain has been flaring up a lot, and I’m pretty sure that it’s from clenching and grinding my teeth due to several stressful things going on in my life now.

Here’s an article that was recently published for RheumatoidArthritis.net about my clenching problem: “Chronic Clencher”

Looking back, I don’t think it’s a coincidence that my tension headaches began not long after I got RA. Living with chronic pain is very stressful, and I think my body tensing and tightening into knots is an unconscious reaction to dealing with pain. My head and muscle pain can become excruciating, and escalate to a point where nothing I can do can help it. I’ve gone to physical therapy several times over the years for my headaches, and I think it’s probably time to go again.

RA Research Project LAUNCHED!

ImYoo, a biotech startup from Caltech, has just launched their rheumatoid arthritis project!

Study link: https://go.kernls.com/3BZEDqP

The study will evaluate the efficacy of first-line RA therapies by collecting blood samples from patients. Support citizen science by donating, participating, or sharing ImYoo’s first decentralized RA study!

RA Research Project Needs YOU!

I’ve recently been working on an RA research project with ImYoo, which is a biotech startup, originating from Caltech (The California Institute of Technology).

INFO:

ImYoo is a biotech startup that spun out of Caltech last year. With our kit, you can take a molecular snapshot of your immune system from home. We think this is important for making research accessible, no matter where you live. We brainstormed research ideas with folks who have RA and now we’re preparing to crowdfund a study for one of those ideas. Please answer our 3-minute survey, so we can launch this study! 

Please take this short RA survey if you’d like to help out with this research project. And please feel free to pass it on to others with RA. We need as many people as we can get to answer the survey in order to move forward with the project and to ultimately help those who struggle with this painful and debilitating disease.

SURVEY: https://akruj13evsf.typeform.com/to/NzJtdiYg

Here’s to SCIENCE! Thank you!

Summer Update

_{Minnesota, August 2022}

I feel guilty that I haven’t updated this blog in quite a while. The days, weeks, months are zooming by; I don’t know where they’re going or how this is happening, once again. So, let’s see, what have I been up to? (if anybody still reads this)

-Job searching/applying

-Working as a process server again (ugh)

-Still writing for RheumatoidArthritis.net

-Still working with Pfizer, Inc. on photo essay projects for arthritis.com

-Trying hard to return to my strict eating/nutrition which has helped keep my RA under control

-Trying/wanting to do more freelance writing and photography work

-Self-care: lots of reading and movie-watching

-Trying to get back into biking regularly

-Lots of karaoke!

Exhausted By Strength

“I dream of never being called resilient again in my life. I’m exhausted by strength. I want support. I want softness. I want ease. I want to be amongst kin. Not patted on the back for how well I take a hit. Or for how many.”

    –Zandashé L’Orelia Brown

Here’s my latest article that was just published for RheumatoidArthritis.net:

“Exhausted By Strength”

This quote by Zandashé L’Orelia Brown resonates with me a lot, which I write about in the article. While it’s certainly nice and affirming for people to recognize what a difficult disease RA is to live with, and for them to realize that it takes a huge amount of strength to deal with it on a daily basis, there are many times when I’m just sick and tired of having to be resilient. I don’t want this disease anymore; I’ve had enough. I think 25 years is enough, thank you. I do want “softness” and “ease” and I’m tired of taking hits and having to crawl and grope my way back to trying to live like a normal, healthy person.

Hope you enjoy the article and that it can connect and resonate with you somehow.

Food Matters

Exciting news! Well, I think it’s exciting at least. I just started a new Instagram page that focuses on the diet and nutrition changes I’ve made since 2020 that have really helped my RA and overall health.

instagram.com/foodmatters.ra

Even after losing 50 lbs, getting off my blood pressure medications, and getting off most of my RA drugs, staying on track with healthy eating is not easy. It’s often a day-to-day struggle and sometimes I slip up and eat something I probably shouldn’t–and that’s OK. I want this new page to be an honest depiction of my ongoing story related to food, RA, and my health in general. I’m also not a great cook and I’m still learning as I go, so I would also love to connect with others to share recipes and ideas and recommendations.

Please follow my new page if you wish, and I’ll try to not bore you with a million photos of my various egg scrambles. :)

_{Breakfast today: Hard-boiled egg, kiwi, pumpkin seeds, salt, ground peppercorn}