Archive for category RA/RAD

Those Who Can’t Journal Haiku

I went to an Ignite talk the other night (a series of 5 minute talks). One guy spoke of the power of journaling, but how easy it is to fail at.

He instead recommended summing up your day in a haiku (you know, those cute little three line poems with 5 syllables in the first line, 7 in the second, 5 in the third).

Well, here goes:

Swollen, puffy feet

Summer flops are not for me

Feet long to be free

I know, I know…it’s my first attempt.

Got a haiku to share? Leave it in the comments!

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Great Attitude, Great Advice

11 Things My Son Taught Me about Life & Business
http://www.sugarrae.com/random/11-things-my-son-taught-me-about-life-and-business/

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$5.6 for RA/Lupus Research

$5.6 for RA/Lupus Research

Hurray! I love reading that there is new research going on!

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Patience Heals

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.

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Eww…Wow.

It’s gross, but, then again, so are autoimmune diseases…

BBC – Future – Health – Worm therapy: Why parasites may be good for you
http://www.bbc.com/future/story/20130422-feeling-ill-swallow-a-parasite/4

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Should I Move On?

Dear friends,

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.

Thanks,

Angsty RAD blogwriter 😉

 

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New Green Monster Smoothie Recipe

New Green Monster Smoothie Recipe

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
11) Enjoy!!!

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Barcelona Marathon Success!

Barcelona Marathon Success!

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).

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When Chilly Isn’t Just Cold

I have been meaning to write a post about Raynaud’s Phenomenon and Chillblains for some time. So why not today while I’m watching snow fall peacefully and thinking, that won’t be good for my toes.

First off, for those of you that don’t know, Raynaud’s is a circulation condition in which cold temperatures or strong emotions cause blood vessel spasms that block blood flow to the fingers, toes, ears, and nose. Meanwhile, Chillblains is a tissue condition that occurs with cold exposure, causing redness, blisters, pain, inflammation and itching.

For me, what this actually means is that I have struggled with cold hands and feet from poor circulation my whole life. When I hit puberty, this translated into my hands and feet occasionally (usually at really inopportune times, because Raynaud’s can be associated with emotion) turning really spectacular shades of blue, red and purple. In my late 20’s, the most common symptom is losing all blood flow to my hands and feet when they’re extremely cold or in high altitude. This causes them to go white and numb.

Then, this year rolls around and my toes are now prone to the really painful, unattractive blisters associated with Chillblains after cold exposure. Fun!

I’m only writing about this because it took me forever to diagnose these two problems. When I first got Chillblains, I thought I’d had a run-in with a troop of vicious spiders that had bit up my toes.

Now, unfortunately, the only treatment I’ve been prescribed is avoiding cold (Ha! Who are we kidding? I ski and snowboard… and I’m training for a marathon in the winter). Other tips include warming your extremities slowly when you come in from the cold (much like frostbite). I’ve also found putting witch hazel on my toes twice a day helps a little.

Though my doc says these are two separate issues from Rheumatoid Arthritis, I’m not convinced it’s unrelated. I am curious how many of you autoimmuners out there also suffer from circulation issues? If so, any tips?

AND, in case you didn’t see my last post, please consider donating to help me reach my goal of raising $500 for autoimmune disease research and running my first marathon! I’m only $200 away!
Donate Now

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Barcelona or Bust: I’m raising money for autoimmune disease research

We did the Vegas half marathon in 2011, and now we’re going to run the Barcelona full to raise money for autoimmune disease awareness & research. Care to donate to our cause?

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:

http://www.razoo.com/story/Barcelona-Or-Bust-Running-For-Autoimmune-Diseases

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…

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