August 18, 2014
Hello from beautiful North Carolina! I’ve been here since August 12th, initially for a medical appointment at Duke University Medical Center with an orthopedic foot and ankle specialist/surgeon. The appointment was a huge let-down, to put it mildly. But I’m glad that I decided to extend my stay and make a holiday of this trip. I’ve been staying on an incredible little island called Ocracoke, which is part of North Carolina’s Outer Banks since last Friday night. I really lucked out in choosing this place, as well as the cute and charming B&B I randomly found online. I’ve been so impressed with the island, the village, the B&B, the beaches. Everything.
You can read more about my Duke and NC experience in the post I recently wrote for RheumatoidArthritis.net:
Tomorrow is my last full day here and I’m sad thinking about it. I’m not ready to go back home! I love the ocean so much and I have to say that island life certainly agrees with me. Alone time is something that I’ve been severely lacking for several months; I didn’t realize how much I needed this vacation.
July 22, 2014
PREDNISONE TAPERING COUNTDOWN DAY…?
I’m not sure what week/day I’m on except that I went down to 7 mg at the start of this week. HOORAY! I WILL reach 0 soon. Staying at 0 is the main goal, though, and that tends to be tricky.
Milligram by milligram I will get off of this drug. Then the next hurdle–tapering off the Xanax and Vicodin. I’m not looking forward to that. I’m actually really nervous of withdrawal/tolerance side effects, but I know I can do it.
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 16, 2014
Good, exciting things are starting to happen just recently! But I’m going to leave it at that until things are confirmed. One of those good things I will say right now is that I’m down to taking 10 mg of prednisone. I’ve been SLOWLY tapering down from 30 mg since April. This makes me very happy and I hope I can continue tapering each week until I’m off of this dreadful medication.
Hooray, 10 mg! Sometimes it’s slowly, step by step, that things get better. And I always must keep reminding myself of this, especially during those times when it feels like nothing will be better again.
Hold onto hope.
April 28, 2014
You know what, I do have some good news to share–I’m not totally consumed with whining and venting about this miserable flare-up that’s going on now (thank God for that, right?).
THE GOOD NEWS: I recently got assigned to write another article for Arthritis Self-Management magazine! The topic is “invisible illnesses.” I’ll be interviewing people who have different kinds of invisible illnesses, not just RA, and how having such a disease affects their lives–and the lives of others around them (family, friends, coworkers, employers, etc.). This “invisible illness” topic is something that’s really important to me not only because it personally affects my life in huge ways, but I know that so many other people are stuck in difficult situations because of it too.
How do you get people to understand what you’re going through when you look “normal” on the outside? How do you avoid being discriminated against because of your illness if you do decide to open up about it with others? How do you find a balance that works? Either people don’t take you and your illness seriously enough, or they judge you because of it. It’s a fine line and I think that many people don’t know how to deal with it–neither the person with the disease nor the caregiver/friend/partner/family member.
For the past 16 years, my default mode has mostly been keeping my mouth shut about my disease while trying to continue pushing forward, and living as normal a life as possible. The danger with this approach is it can lead to intense feelings of isolation and frustration, which I often do feel. I don’t know. Despite living with RA for so many years, I don’t have the answers or feel like I know what I’m doing most of the time. But I’m looking forward to talking with others who also understand what it’s like living with an invisible illness and hearing about their experiences. I’m also excited to be able to spread more awareness about this issue. There is a weird stigma and sense of taboo attached to talking about chronic illnesses, and especially chronic pain. It’s frightening and uncomfortable and awkward, but it’s a real problem. There are too many people out there whose pain and struggles are still invisible.
April 28, 2014
KEEP ON LIVIN’! KEEP ON LIVIN’! KEEP ON LIVIN’…keeps shouting in my head. Well, I did just finish watching The Punk Singer (2013) again (love it!). This Le Tigre song is a catchy tune, but it’s also not a bad mantra to have looping over and over again in my mind at the moment.
Keep on livin’ –easy, right? No. I’m still going through a bad RA flare-up despite taking 30 mg of prednisone for over two weeks. My right foot and ankle are killing me and not much is helping. I have ice strapped to my foot most hours of the day. I’ve got my ankle wrapped in ace bandages and tape and I’m trying to elevate it wherever I am (which is not easy to do when you’re in public). I also took all last week off from work (and today) to try to rest and stay off my feet, despite feeling guilty for doing that–that I was letting my employer, coworkers and myself down.
Well. What can I do? More phone tag with my doctor’s office and nurse. More medications. More MRI scans. More unanswered questions. Desperation elimination diets. Acupuncture? Meditation? Drinking binge? I have no control. And that’s one of the main things I hate about having RA flare-ups–the disease is in absolute control during these times. I don’t know how long this is going to last and I don’t know how much or little pain is going to come from it. The scariest thing is not knowing if it’s going to go away or if I’ll be stuck with a new permanent disability. I keep trying to tell myself to calm down and not panic and not fall into despair because that won’t help anything. And as cheesy as it might sound for me to say this–I am simply trying to just keep on living right now. Living would be a lot easier, though, if my doctor, or someone, could figure out how to help me get better.
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. It’s great.