February 15, 2014
Well, I’m taking prednisone again–10 mg. I’m not happy about being back on it, but at least it’s helping.
Damn foot and ankle.
January 30, 2014
I’m a girl you can’t shut up! –said musician/artist/Riot Girrrl/feminist/activist Kathleen Hanna. And I’m really glad that she doesn’t shut up. I recently wrote a blog post for RheumatoidArthritis.net about a wonderful documentary I saw last month called The Punk Singer (2013), which is about Kathleen and her contributions to feminism, the riot girrrl movement, music, and the world in general–as a creative and empowered woman. You should definitely check it out; it’s not out on DVD yet (March, I think), but it’s still showing in some cinemas. The documentary also reveals Kathleen’s struggles with a serious, chronic illness, which came as a surprise to me.
Here’s my blog post regarding my thoughts about the documentary, Kathleen Hanna, and my own passion for becoming involved with advocacy work:
I hope you like it! And again, please see The Punk Singer if you can–especially if you’re a music nerd like I am. :)
Thanks for reading!
January 20, 2014
Hooray, hooray, HOORAY! I’m off prednisone as of TODAY! Cross your fingers this lasts a while. Or, forever.
Sadly, it could not last. Back on 5 mg. :(
January 12, 2014
So I’m back on prednisone, which is annoying. Right now I’m taking 10 mg, but I was taking 15 mg for a couple weeks. About a month ago a pretty bad flare-up started in both feet and ankles–especially the right foot and ankle. Swelling and terrible, throbbing stabbing pain. I’ve been trying hard to resist taking steroids because of their nasty side effects, and because I’ve been trying very hard to lose weight. But, once again I felt I had no other choice than to take prednisone temporarily until the flare-up is gone. The drug has been helping, which is great, but it’s also been affecting my moods and causing me to have a raging, ravishing appetite. I want to stuff my face with every carb I see, basically. This is frustrating and depressing.
I wrote more about this in a blog post for RheumatoidArthritis.net which hasn’t been published yet (soon, hopefully). In it I ask for tips and suggestions about how to cope with the side effects of prednisone. How can I control my appetite better while taking this wonderful yet awful drug? I’ve been trying to drink a lot of water and tea which is helping, sort of. I’m not sure what else to do other than, yeah, taping my mouth shut. But when a pasta/bread/sugar/chips craving pops up, I’m not sure if I could stop myself from ripping it off anyway. Lock me in a closet instead? Chop off my hands? Joking aside, those aren’t realistic options, of course. Anybody have any good ideas? Please tell me soon, before I clean out the fridge…again.
December 26, 2013
Most everyone has a “brick wall” (or two or 10, maybe) that can get in the way of fulfilling dreams and goals and living the life you want. I’ve been thinking about my own brick walls lately, thanks to one of the classes at the high school where I substitute teach. In this class we watched a video of Professor Randy Pausch’s: “The Last Lecture: Really Achieving Your Childhood Dreams.” If you haven’t seen it yet, I highly recommend checking it out, as well as reading his book, also titled The Last Lecture. Pausch was such an intelligent, creative, passionate, and down-to-earth person, dedicated to helping others–especially his students. I’m a few years late discovering him and his lecture, but I’m so glad that I finally have.
I recently wrote a longer post on RheumatoidArthritis.net about Pausch’s lecture as well as the struggles I’ve faced dealing with my own brick walls in life–such as living with RA.
You can read my post here: “Brick Walls & Childhood Dreams”
I hope you like it!
The Last Lecture links:
October 23, 2013
Living with a chronic invisible illness such as RA can be tough, for several reasons. Just because you might look “normal” and healthy on the outside, that doesn’t mean you aren’t actually dealing with a lot of pain on a daily basis–physically and emotionally. Sometimes family, friends, co-workers, bosses, and even doctors can be surprisingly insensitive and judgmental regarding this issue. Here’s a recent blog post I wrote for RheumatoidArthritis.net about the pain of living with an invisible illness:
Thanks for reading!
October 17, 2013
Here’s a link to my latest blog post that was just published tonight on RheumatoidArthritis.net!
I received some really happy, surprising news when I went to my last doctor appointment on Monday. I stepped onto the scale for my regular weigh-in and when I saw the numbers flash on the screen I almost fell off of it. I LOST WEIGHT! Crazy. Well, it seems crazy because for the last month or so (or, um, all summer?) I’ve fallen off the weight-loss wagon and I haven’t been doing anything or really paying attention at all to what I’ve been eating. Actually, I feel like since I started the substitute para job at the high school about a month ago that I’ve been eating much worse and indiscriminately scarfing down whatever junk I feel like eating (gallons of coffee, Diet Coke, fast food, burritos, chocolate, pasta, bread, etc.) But hey, I don’t want to complain about this mysterious drop of pounds. I’m ecstatic that I’ve lost about 4-5 lbs. over the last month and I can feel that my clothes are looser too. Now I just have to keep on losing to finally get to where I want to be, which is about 30 lbs less than I weigh right now.
But anyway–my latest blog post on RheumatoidArthritis.net goes more into the difficulty of losing weight while having a painful chronic disease like RA and my personal struggles with it over the years. But I’m going to use this terrific, inspiring news of my recent weight loss to motivate me to get back on track with healthy eating and exercise. I really do want to be healthy. Losing weight is a smart goal to have, for so many reasons.
October 13, 2013
September 13, 2013
I had my bi-monthly Remicade (infliximab) infusion a week ago which was exciting and fun as usual (not). But I’m thankful for it, especially because my stubborn right ankle and foot have been flaring up worse again lately. Why? Stress? I’m guessing stress. Or else God hates me right now. Maybe both. But seriously, it’s painful and irritating and annoying and I don’t have time to deal with it. I also really don’t want to go back on prednisone, which I’ve been lucky to be off since early June. Will I ever be off of that evil yet wonderful drug for a whole year again? I wonder. But back to stress — there’s been a lot of it going on in my life the last few months. Well, all summer really.
August 28, 2013
A new RA website is officially launching TODAY – RheumatoidArthritis.net
It’s a cool site, full of information about rheumatoid arthritis for patients, families, spouses — everyone really! A great part of this site is there is a community of bloggers sharing their personal stories of living with RA. And the exciting thing is, I’m going to be one of their featured regular bloggers! So now in addition to blathering on about medical appointments and swollen joints on this blog, you can read my posts over at rheumatoidarthritis.net too. Whoo! Actually those will probably be a little more organized structurally. And maybe more well-thought-out. Although I do try to not sound like a blubbering idiot on here, too, I swear. Ha ha. In any case, I hope you like the new site and my blog posts.
So check it out! It’s a neat site and I think it will be a helpful resource and source of communication and community for people affected by RA.