April 24, 2015
And in good news…here’s an awesome group photo of us HealtheVoices patient/health advocates with a gorgeous view of Manhattan in the background. What an inspiring group of people! Can you spot me?
(Hint, I’m short)
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.
September 23, 2014
Apparently everyone in the health care field is incompetent today. About to go punch out someone at Target pharmacy right now.
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.
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.
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.