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 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

When to Tell or Not to Tell?

Minnesota, 2022

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.