Posts Tagged Autoimmune diseases
First off, my apologies for being off the radar for, well, months.
My work has been busy and I’ve been trying to finish up my second novel. (If anyone has any interest in checking out my first book, you can find it here.)
It’s left me with little motivation to write this blog after busy days that include a lot of time in front of the computer. In fact, I’ve spent many nights these past few months just being exhausted and having a great relationship with Netflix.
On to the good stuff.
I was recently at a dinner and found out through that a person close to me might have Lyme Disease. I was listening to her symptoms – sore joints, fatigue, depression – and told her I understand how a lot of these symptoms feel and that she should call me if I want to talk.
To which she responded, “But you’re better, right?”
She’s not the first person I’ve heard this from. I’ve heard it from friends and family, those who should really understand chronic disease better. And I get it. They see me and I look healthy — I go to work, get exercise, write, travel. I don’t complain like I used to before I had a diagnosis.
I’m better, right?
Well, not exactly. “Better” suggests “cured” and I think that’s how most people mean it. But in the world of chronic disease and Rheumatoid Arthritis, cured is not really part of our reality (Yet! So much exciting medical research is happening right now!).
So how can you balance educating people, but not causing those close to you worry -OR- come off as complaining?
Honestly, I’m not sure.
I responded by saying that my drug therapy allows me to manage my disease and I feel much, much better than I did before treatment. This is the truth. I balance pain, fatigue, new limits, and, yes, even depression from time to time. I tweak my drug regimen constantly to take the least amount of drugs possible while managing my pain. I take two heavy-duty drugs weekly just to keep a semi-normal life and I get blood panels regularly to make sure my liver’s keeping up.
I don’t feel cured, but I do feel better.
So, what about you? How do you handle the “Aren’t you better yet?” line?
I was going to write a blog post about how today I just feel exhausted, slow, off, and really irritated about it. My wrists hurt, my fingers hurt, my body’s heavy, and I’m just tired. Too tired to write a post about it, but this article sums it up better than I could right now anyway:
It’s gross, but, then again, so are autoimmune diseases…
BBC – Future – Health – Worm therapy: Why parasites may be good for you
I just finished The Last Best Cure by Donna Jackson Nakazawa, author of The Autoimmune Epidemic.
A sufferer from autoimmune diseases herself, in this book she takes a year long journey into the world of alternative medicine. Her quest is to find joy and see if she can improve her health even more than her drug therapy has accomplished.
I was a little wary of this book because it screamed self-help esoteric hippies, but I was such a fan of her previous book, I thought I’d give it a try.
This book really resonated with me. It isn’t over the top, she’s as skeptical as I was at the start of her journey. And since she’s a science writer, there’s an emphasis on how these alternative therapies may be working. This is a good read for anyone feeling like they’re at the end of their rope with Western medicine, or just curious about how yoga, talk therapy, acupuncture, acupressure and tai chi could help them.
The start of her quest leads her to therapy to discuss childhood trauma (ACEs). She, like me, is pretty skeptical. She’s a grown woman who doesn’t resent her childhood and, though she may have had some trauma (father’s death, distant mother), she knows other kids had it way worse. But there actually is some science behind journeying back into your past. A study showed that every trauma (ACE score) you have before age 18 increases a woman’s likeliness of being ill or hospitalized with an autoimmune disease by 20%. That’s huge. It basically works like this, as a kid, you develop responses to stressful and traumatic situations that serve you in the moment. As you move into adulthood, you carry those learned stress responses with you, but they may not be the healthiest coping mechanisms and may not be serving you anymore. Luckily, according to recent science, the plasticity of our brain allows us to re-train our stress responses.
As Donna sets out to re-train her stress responses and find joy, she tries out various forms of meditation, yoga, acupuncture and moving qi. Each of these were well worth the read. In fact, the book may have finally pushed me to try out meditation. (I’ll let you know how it goes…)
In a nutshell:
But something else happens as we look through that quiet window into our own experience. “When we put down the mantle of stress that we carry every moment, we become keen observers of what those stresses are,” Janet says. “I watch, over time, as the women I treat finally start to see the blocks and behaviors that have been holding them back. The grief they can’t let go of, the patterns they’ve been repeating that are keeping them stuck.” … “Becoming that calmer, wiser observer unleashes something in them – their own healing qi. Their back pain gets better, their fatigue lifts, their hormonal imbalances balance out. Their physical symptoms subside. And at the same time, they feel a new energy – that allows them to become who they are meant to be.”
Check out more here: http://donnajacksonnakazawa.com/last-best-cure/
I just got back from my mega trip to run the Barcelona marathon! I’m very proud to say that thanks to you guys, I raised $555 for autoimmune disease research and awareness (http://www.razoo.com/story/Barcelona-Or-Bust-Running-For-Autoimmune-Diseases). That’s $55 more than my goal!!!
I’m also proud to say I MADE IT! I’m not going to lie. It was very hard. My body was aching, my feet were screaming, my legs were shaking and my time wasn’t great, but this pic is me crossing the finish line! 🙂
Here’s my breakdown (obviously, I was slowing down at the end):
10 km time: 01:02:39
1/2 Marathon time: 02:17:40
30 km time: 03:23:27
42 km time: 04:54:30
I’m not sure there’s another marathon in my future, but I am so proud of this one. I’m also happy to report that my body recovered quickly. I was able to go see a FCBarcelona football game that night, do yoga the next day, and thoroughly enjoy the rest of my trip (more on that in another post).
For some reason, I really struggled with the concept of asking people to donate money for a cause I care about.
Why? Because it makes me feel extremely vulnerable. Because only a handful of people know that I have RA. Because asking for money makes me feel obnoxious.
But, I put all that aside and decided to set up a donation page to give my marathon a purpose: raise money for autoimmune disease research.
I chose to donate the money to the American Autoimmune Related Diseases Association, because they are not focused on just one autoimmune disease. Since these crazy, mysterious diseases seem so connected, this appealed to me.
I know you all already do your part by raising awareness of autoimmune diseases, but please consider donating if you can:
P.S. Have you told everyone in your life about your disease or are you keeping it a secret? As I’m weighing the pros and cons of sharing the donate link on Facebook, I’m wondering how other people have handled this…