Yesterday I had my first iron IV infusion since last December because my hematology labs are still abnormal; my hemoglobin is 10-something. I’ve been dealing with anemia or borderline anemia ever since my RA diagnosis 18 years ago, I think. During all of those years I knew my anemia was somehow related to RA, but it’s not until just recently that I started doing some research on it.
Hello! I can’t believe how long it’s been since I’ve posted on here. Very embarrassing. So many things have happened regarding my health, work, family, and friends since November. There’s a lot to catch up on and I am going to do it!
Right now, I’m going through a pretty bad flare-up in both feet and ankles and a bit in my hands. The feet/ankles flare started about a week ago and then got quickly worse while I was in Chicago last weekend for a wonderful conference called HealtheVoices. I will write more about that very soon, I promise! Despite suffering through the staggering physical and emotional pain of the flare, I was so inspired and energized being a part of the conference again (I was at the first one held last year in Jersey City, NJ). Just being there with my fellow RA friends and advocates as well as connecting with people who are advocates regarding other chronic illnesses…it was incredibly motivating and empowering. But more on that later! Know that there are a lot of people out there who really care about those who live with RA and are passionate about making lives better. This gives me great hope.
This post is a bit rambling and scrambling, but I wanted to post something now. Finally! I’m still here and this blog and cause are still so very important to me. They always will be. :)
I hope you’re all happy and as pain-free as possible out there…in the Internet universe.
So I just got an email from someone at ABC News about an arthritis Twitter chat happening TOMORROW with moderator Dr. Richard Besser, ABC’s chief health and medical editor. ABC News is looking for people to discuss all aspects of arthritis: symptoms, treatment, etc. And they want to hear from researchers, clinicians, bloggers, and patients.
**The video on the link isn’t about the arthritis chat specifically. But the instructions of how to join one of Dr. Besser’s chats is explained below the video. You can use that information to join the arthritis chat tomorrow.
Please join the chat if you’re interested and pass along the info to others. I’ll be there, tweeting! Look for me at @aclundberg
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.
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.
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.