April 20, 2015
I just attended an incredible conference in Jersey City, NJ comprised of health bloggers and advocates from all over the country, who all suffer from different chronic diseases. Wow! What a weekend! I’m sad it’s over, but so happy to have been a part of it. I have a lot of blogging and photo updating to do from this weekend (and in general), and I will post more here ASAP about the conference. I just want to write a little something right now before I head to my next adventure….which is MOVING TO BROOKLYN, NEW YORK! Yikes! More on that soon, too.
If you’re interested, you can look up #HealtheVoices15 on Twitter for lots of photos and posts about the conference. Health advocates coming together with experience that spans across MANY diseases and conditions is a pretty powerful thing.
January 31, 2015
Monday, January 26, I had my first Actemra infusion. I’m not sure how to feel or react to this, exactly. Hooray? Congrats to me? Holy shit? THIS BETTER WORK? In any case, it’s a new chapter in my RA life. Actemra is now the fifth biologic drug I’ve tried since I first began biologic injections/infusions, starting with Enbrel in autumn 2002. I can’t believe I’ve been on them that long! Luckily (I’ve been very lucky) I haven’t had problems with side effects with any of these still fairly new medications.
Before beginning Actemra on Monday, I received bi-monthly Remicade infusions for about seven years (for the second time). I had been on Remicade once before from approximately 2004-2007, then I switched to Humira injections because I moved to France briefly to teach English (my doctor and I decided it would be easier to do injections in a foreign country rather than trying to sort out getting infusions while abroad). When I returned home to Minneapolis from France, I switched to monthly infusions of Orencia, basically because I really hated giving myself shots; I never got used to doing it. I can’t remember how long I stayed on Orencia, but my rheumatologist and I decided that if I was going to stick with I.V. infusions, Remicade seemed to work a bit better for me. So after a brief time on Orencia, back to Remicade it was.
A few months ago my rheumatologist and I finally decided that it was time to change my RA treatment and try a new biologic. Remicade just didn’t seem to be working that well anymore. I was on prednisone more often than I wasn’t due to frequent and stubborn flare-ups. One of our main goals for my treatment has always been to stay off of prednisone. And now that I try to remember, I think it’s been at least a few years since I’ve been off of it consistently for more than a few months at a time.
So! While starting a new medication can be scary and worrying, I’m also trying to be hopeful and positive that Actemra will be a good turning point in helping to stabilize my RA and maybe even put me into “remission” for the first time. I’m so ready to have a good long stretch of significantly decreased pain and flares and especially a nice lengthy period of NO PREDNISONE.
I hope this works.
July 19, 2014
Acupuncture Day 2 (in a row):
Large-ish, very noticeable bruise on my forehead after today’s needle stabbing. How attractive. I hope this works soon.
Why can’t insurance pay for massage treatments? That would be more pleasant and equally beneficial for my chronic pain, I’d argue. I actually quite like getting acupuncture treatments, but massage therapy would feel so much better.
In other “alternative” news, I already failed my gluten-free “diet.” Big surprise there, eh? My anxiety is through the roof again and my tension headaches are on screaming fire. So, while this stuff is going on, I’ve found it a bit challenging to stick to my new gluten-free goals. Also my no-caffeine goals. AND my no-alcohol goals. Whatever. You can’t change the world at once, right? But I have little patience and I hate taking baby steps. I will get back on the “wagon” ASAP though with all of this stuff once my head decides to stop exploding.
Maybe I need to start meditating (do I have the patience and focus to do that?). Speaking of that, based on a strong recommendation from one of my pain management doctors, I recently bought a book by Jon Kabat-Zinn: Full Catastrophe Living. I’ll let you know what I think.
Happy weekend, everyone! I’ll let you know how my next acupuncture session goes on Monday and how many additional bruises I’ve acquired. I’m sure you’ll want to know.
July 10, 2014
So I’ve been M.I.A. on here for quite awhile, as you might have noticed. Unfortunately I’ve been dealing with all kinds of exhausting craziness: RA flare-up, additional health problems/illnesses, family stress. BUT! I’m finally feeling better and that I’m ready to get back to working on my writing and photography work (among other projects and things).
I’m happy to be on my way back!
Thanks for reading and sticking with me.