December 2, 2014
Here’s an article I wrote for RheumatoidArthritis.net recently about the change in federal regulations regarding certain pain medications. I’m not very happy about these changes, to put it mildly. It’s now even more difficult for people with chronic pain to get the relief they need. Luckily I live in a state right now where I’m not required to go to the doctor for an office visit just to get a handwritten prescription from him (and therefore charged $200+ for the office visit). A couple of new friends I met in New York and New Jersey over the last two weeks have to deal with this. It’s ridiculous and discriminatory, in my opinion. Something needs to be done! Nobody should have to be in pain in the first place. Nor should anyone be forced to suffer additional pain because of government laws that hurt patients instead of helping them.
September 23, 2014
Apparently everyone in the health care field is incompetent today. About to go punch out someone at Target pharmacy right now.
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 little 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 came across 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 quite 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.