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.
April 17, 2014
But aren’t they all inconvenient? I’m sorry I haven’t posted in such a long time. This winter in Minnesota (and other parts of the world, I know) has been brutally depressing, and I basically haven’t felt well throughout most of it. As I sit here writing this, I’m looking out my window at SNOW covering everything. We got dumped on yesterday and last night, which isn’t helping my mood or physical state of being. I’m bummed out, I’m stiff, I’m achey, I’m anxious, I hurt all over.
Anyway, I’m currently in the middle of a pretty bad flare-up. My stubborn right foot and ankle have been in intense, swollen, throbbing pain all week. The left ankle is also flaring up but not as bad as the right one (which is its usual pattern). I’m also taking 30 mg of prednisone, which is making me feel sluggish and bloated and agitated and mental and everything that wonderful prednisone likes to do to a person. I think it’s helping, a little. I hope it will hurry up and knock out this inflammation ASAP though. I’m supposed to drive six hours south to Omaha this weekend to spend time with friends I haven’t seen in a while, but I don’t see how I can do that with my inflamed foot. Driving only irritates it more. Not happy.
So, to sum up–winter came back last night and dumped a load of snow and misery on my street. RA came back this week and dumped a load of inflammation on my feet. I’m pretty pissed off about both things. Hopefully there is a silver lining to this, somewhere. There must be, right?
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. It’s great.
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.