Archive for April, 2013
Great Attitude, Great Advice
Posted by My RAD Life in RA/RAD on April 30, 2013
11 Things My Son Taught Me about Life & Business
$5.6 for RA/Lupus Research
Posted by My RAD Life in RA/RAD on April 28, 2013
Hurray! I love reading that there is new research going on!
Posted by My RAD Life in Alternative Medicine, Dealing, RA/RAD, Symptoms on April 28, 2013
There’s been times on this blog where I’ve complained or wondered about the efficacy of acupuncture. I wanted to share the very positive experience with acupuncture I had this week.
When I first took a chance on acupuncture, I went to an eastern medicine school close to me. They were VERY affordable, at only $25 for acupuncture or herbal recommendations. The only problem was, it was never relaxing.
The students weren’t always sure of themselves and the teachers who answered their questions were teaching more than treating me like a human patient.
And then after they stuck me with needles, they would leave and I could overhear them chatting with fellow students in the hallway. It was not relaxing at all and, being new to acupuncture, I would have panic attacks when they left me in the room.
I gave this clinic about four chances and then pretty much swore off acupuncture. Then my friends started recommending an acquaintance of mine who had just started her own practice. They weren’t just recommending, they were raving.
So despite the hour drive and much higher cost, I decided to go see her. I bought a five session package to save money. So there I was, committing once again to something I’d tried and given up on. I’m so glad I did.
Off the bat, the experience was more caring and relaxing. She took time to go over every bit of my history, from medical to personal, in a very human (read: not just doctor to patient, mhmm, mhmm) kind of way. I found that leaving her sessions would at the very least put me in a better mood. I couldn’t say with certainty that it was helping my RA though.
And then, last week, something very miraculous happened. It had been about three weeks since my last session with her, and I’d been struggling with joint pain and all over aches and fatigue pretty consistently for about a month. I was bordering devastation because I had been feeling so good before and during my March trip to Spain.
Not to mention, I had consulted with a doctor in March who had given me the go-ahead to get off methotrexate since I was doing so well. My constant pain that seemed to getting worse and worse was making me really nervous about getting off MTX, so I haven’t done it yet.
So last week I go to her and tell her the positives – my digestion’s been great, my wrist is no longer shooting nerve pain up my hand – and the negatives – I’m stressed and freaked out, achy all over with pain points in my joints, and struggling with fatigue.
We chatted and she stuck me with needles and let me relax (yes, actually relax) for about thirty minutes. By the time she took the needles out and I left her office, I felt like a new woman. I wasn’t in pain.
Over the last couple of days, I’ve had mild pain in specific joints – my left wrist, my right foot. But that is more par for the course and hasn’t stopped me from signing on for training for a sprint triathlon or running a 15k benefit run for Boston yesterday. The mysterious, horrible, unrelenting all over achiness has lifted.
I don’t know if it was actually being able to relax, or venting my problems, or the needles, but I’m so happy I could kiss her. 🙂 I settled for sending her this card:
I have now decided to buy 10 more acupuncture sessions with her. I hope each one is as magnificent.
Posted by My RAD Life in Alternative Medicine, Drugs, RA/RAD on April 23, 2013
It’s gross, but, then again, so are autoimmune diseases…
BBC – Future – Health – Worm therapy: Why parasites may be good for you
Posted by My RAD Life in Fitness, Running/Marathon on April 16, 2013
I’m sporting my Barcelona marathon tee in support of the victims of the Boston Marathon bombings and the running community in general.
I watched the tragedy unfold yesterday and was absolutely speechless, horrified, and angry.
Who would do this? Why? And why are they so cowardly, they haven’t come forward to claim responsibility yet? What did they hope to gain if it wasn’t credit for the attacks?
Don’t they realize that runners will not be terrorized. If I’ve learned anything in my year training for my first marathon, it’s that RUNNERS’ SPIRITS WILL NOT BE BROKEN.
We run to defeat all odds and expectations. We run to stay free. We run.
For those who died or lost limbs, my thoughts are with you. This is such a terrible tragedy. You have the support of the running community. An international community of people who will not give up.
Should I Move On?
Posted by My RAD Life in Doctors, Drugs, RA/RAD on April 5, 2013
For those of you that follow my blog, I am very interested in advice…
As you know, I went to get a second opinion on my rheumatoid arthritis treatment because a family friend’s death illuminated the connection of methotrexate to interstitial lung disease.
Well, I went to a pretty renowned hospital and saw a very nice female (wow, rare!) rheumatologist who is not much older than I am. She was easy to talk to, smart, and, since she works in a research hospital, very up-to-date on the latest RAD research.
And get this, she wants me to try to go off methotrexate and see how I do with just Enbrel. Her reasoning was that a) I have valid concerns about MTX side effects, b) my last two liver tests came back high, and c) why not try it?
Granted, she hasn’t been my doc, so hasn’t seen me before my drug therapy or on bad days (it was a good day when I saw her). But she thought my treatment may be a bit unnecessarily aggressive.
If going off MTX didn’t go well, she talked about putting me on Azathioprine, which I know nothing about, but pulmonologists (lung docs) like better than MTX. Has anyone been on Azathioprine or have thoughts about it?
*It should be said that methotrexate causing interstitial lung disease is quite rare, and in many cases treatable. I am just a little sensitive about this because I had severe interstitial lung disease as a child. My lung doc says that I’m not necessarily at more risk than the average RA patient for developing ILD, but I’d like to play it safe.
But, of course, I’d also like my treatment to work.
I’m scared to death of getting off MTX when my current drug therapy seems to be working pretty well.
I also don’t want to be on MTX for the rest of my life…
My current doc brought me down to seven pills per week from 10 because of my liver, but I know he’d rather see me stay on the MTX.
I feel as though I have to decide on both which doc to go with (you can’t have two rheumatologists, apparently; they’ll just disagree on everything) and which treatment plan. And I feel like I have to decide by Sunday, which is methotrexate day for me.
Finally, how do you even break up with a doc who’s been kind, effective, and accessible? And should I? The new hospital offers more cutting edge care and is bigger, so my rheumy would be consulting with other rheumatologists and pulmonologists. I can also participate in research there. BUT, it’s further from my house and my new doc may be a little less accessible than my current one.
If anyone has advice on how to choose doctors, break up with doctors, or switch treatment plans, I would really love to hear it.
Angsty RAD blogwriter 😉
New Green Monster Smoothie Recipe
Posted by My RAD Life in Dairy/Casein Free, Diet, Gluten Free, RA/RAD, Recipes on April 5, 2013
This is my new favorite morning smoothie:
1) A bunch of fresh parsley
2) A handful of kale
3) 1 banana (fresh or frozen)
4) A few inches of cucumber
5) Avocado (half or full)
6) A bit of fresh ginger
7) A teaspoon (or so) of chia seeds
8) For the inflammation challenged…A tablespoon (or so) of liquid fish oil
9) Unsweetened almond milk
10) Agave sweetener as desired
The Last Best Cure
Posted by My RAD Life in Alternative Medicine on April 3, 2013
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/