Recently published on rheumatoidarthritis.net — my article on Virginia Woolf’s essay “On Being Ill.”
Virginia Woolf herself suffered from chronic illness for the majority of her life until her death in 1941.
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.
Here’s a recent article I wrote for rheumatoidarthritis.net about the anemia-RA connection.
I’m willing to bet that there are a lot of other people out there with RA who also struggle with anemia. Is your fatigue from your RA and pain or could it be from low iron levels? Good question! :)
Aaaand…I’m recently on Humira. Again. Xeljanz (as well as Actemra) failed me. Last Friday I gave myself my fourth injection, which now equals two months of being on Humira. Unfortunately, maddeningly, I’m still taking prednisone and I’m still having pain and swelling in my fingers and feet and ankles. I’m not happy about this. Actually, I’m trying hard to not be scared to death about it. Are the anti-TNFs no longer working? Will anything work?! Will I ever get off prednisone?
Here’s another update I wrote for RheumatoidArthritis.net about what’s been going on in my RA life, and specifically about the recent switch back to Humira:
My body is really frustrating me lately. In fact, I kind of hate it. I know that’s not a great attitude to have and being angry and pessimistic will not make things better. It’s really hard though when you feel like you’re playing this never-ending game of musical chairs or “musical drugs.” But it doesn’t sound much like music to me–more like the unbearable shrieking sound of “WE’RE NOT GOING TO HELP YOU!” screaming over and over in my head.
Come on, Humira. Get moving and do what you’re supposed to do, please. Please.
Here’s an article of mine that was recently published on rheumatoidarthritis.net: “Smaller Phones, Less Pain: the new iPhone SE”
The article is my take on what has been the seemingly growing trend of bigger and bigger smart phones and how that affects people with RA. Basically, the larger phones hurt my hands, so I’m ecstatic to discover that Apple has a new SMALLER iPhone available now. I’m an Apple person and I want to stick with iPhones (for now), so this is great news.
However, I recently got a comment on the article from someone disagreeing with me on my opinion of smaller smart phones being better for RA. She made some good, interesting points that I’m going to respond to right now, actually! What do you think?
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.
I just finished editing and posting the photos I took at last weekend’s “Jingle Bell Run/Walk” which was put on by the Arthritis Foundation’s Upper Midwest Chapter. It was fun seeing all of the people decked out in their crazy Christmas/holiday outfits. It was also great to see such a big turnout.
Here’s a link to the album on Flickr if you would like to see more photos:
Hello again, my fellow RA-ers (and anybody else who reads this blog)!
I recently found out about a research opportunity for people living with rheumatoid arthritis that I thought I’d share with you. The company is Focus Pointe Global, which is a National Medical Research Company. I’ve actually participated in one of Focus Pointe Global’s RA studies myself and it was a positive, worthwhile experience. I’d definitely work with them again in the future.
Here’s more info:
Focus Pointe Global is currently looking to speak with people living with Rheumatoid Arthritis for an upcoming research opportunity. There are no sales involved and all information collected during the research process will be kept confidential and used for research purposes to help those in the healthcare field better understand the needs and challenges of living with RA.
By participating, you will be able to give direct feedback to professionals that can actually make a difference. Participants will be compensated for their time and efforts. This opportunity is available nationally.
If you are interested, please click this link, sign up, and fill out the short survey and you will be contacted within the next month: Focus Pointe Global RA Study
If you have any questions, please email:
Good luck and please feel free to pass along this information to others who might be interested in participating!