July 19, 2016
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.
July 19, 2016
Once again I’ve been M.I.A. from this blog, which makes me feel guilty and embarrassed. I know it’s my blog and I can do (or not do) whatever I want to with it, but I hate that it’s been neglected so much lately. Apologies to everyone who’s been wondering where the heck I’ve been and what I’ve been doing!
Happily, I have still been doing a lot of writing about RA and related issues for RheumatoidArthritis.net. One of my latest published articles gives a bit of info to help explain what’s been going on with me lately, if you’re interested to read it. Basically, it’s been a really rough spring and summer, with months comprised of major health problems and, well, some very bad luck. In May my car was stolen along with all of my camera gear (it was hidden in the car). I also had a ridiculous accident the same night which resulted in several fairly serious injuries. And my RA has been flaring up since April, which doesn’t help matters. So! Below is a link to article where I wrote about all of this crazy stuff. Don’t worry, it’s not entirely depressing and whiny, I promise. I have been working hard to get things back on track!
I hope everyone out there is having a wonderful, fun, and pain-free summer! I plan to be back blogging on here much more regularly now, so stay tuned. :)
April 21, 2016
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?
April 21, 2016
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.
November 23, 2015
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:
And, here are a few more of my favorites:
November 19, 2015
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!
November 19, 2015
Where does the time go? Seriously. So much has happened just within the span of a few weeks, but in a way it feels much longer ago than that.
OCTOBER: In late October I flew to New Jersey to participate in an advisory panel for a pharmaceutical company. It was a one-day consulting job, but I found it to be very professional, interesting, and a great chance to discuss RA and RA-related issues with others who are involved in rheumatology and healthcare.
After New Jersey, I decided to swing over to NYC for a brief visit (since I was in the neighborhood), and I had a wonderful time staying with my friend Holly in her little apartment in Hell’s Kitchen, Manhattan. It felt both odd and good to be back in New York, after I had to leave it so miserably and abruptly at the end of August. This time, I didn’t want to leave.
NOVEMBER: A week after I returned from NJ/NYC, I found myself on a plane yet again (I’m usually not such a jetsetter), this time heading to San Francisco for the annual Joint Decisions Empowerment Summit. This year it was actually held in Sausalito, which proved to be a perfect and beautiful choice for a location. The summit was excellent, as it was last year in Boston, and I will write a more in-depth update about that soon.
The last day of our Joint Decisions summit, most of us RA bloggers/activists traveled over to San Francisco to attend the American College of Rheumatology‘s annual meeting/conference. This was my second time attending and experiencing ACR, and wow, yet again I was impressed at its massiveness and global importance in the field of rheumatology and healthcare.
So right now, I’m desperately trying to play catch-up in the other areas of my life: work (substitute teaching, writing, photography), family, and my health.