I know I haven’t updated this blog in seemingly forever. Sincere apologies (I’m embarrassed about this)! 2016 was one of the most challenging years I’ve ever experienced, I’d argue, and it used up a lot of my time, energy, and health. I know I’m being vague here, but I’ll explain more in following posts. I’m really glad that a new year is finally here and I hope it will be happy and healthy for everyone!
That said, here’s a recently published article of mine on rheumatoidarthritis.net about the issue of rising and unaffordable out-of-pocket costs for people who currently have health insurance. I know I’m not alone is having to deal with this issue.
I’ve lived most of my adult life being “dangerously uncovered” even while having health insurance. I know that the fate of our country’s health insurance is on shaky ground right now; it will be interesting (and hopefully not alarming) to see what happens in the near future with the Affordable Care Act and the Trump administration.
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.
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.
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!
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.