These bruises, while certainly not pretty, are very visual representation of the battle I am fighting for my health every single day.
Monday, January 19, 2015
Tuesday, January 13, 2015
One other thing happened when I went to Boston for the Joint Decisions Empowerment Summit and the American College of Rheumatology meeting: I finally got on The Twitter.
Yes, yes. I do know it's not actually called The Twitter. But after avoiding it for so many years I do feel kind of like the old fogy of the internet trying to figure it all out! Luckily the amazing bloggers I met at the empowerment summit were very encouraging.
Those of you who read this blog regularly will know that I am generally quite long-winded, so the 140 character limit is a huge challenge for me! At this point I must admit that I'm not exactly sure what to say on Twitter, but it does seem to be another important avenue for advocacy and getting connected, so I'm figuring it out!
You can follow me at: @MariahForward (or by clicking the button I added to the right-hand menu).
Friday, January 9, 2015
When I was in Boston for the Joint Decisions Empowerment Summit, I also had the opportunity to spend a few hours at the American College of Rheumatology (ACR) Annual Meeting with a press pass. (I know, I know. That was in November! This post is better late than never, right?)
It was an interesting and, honestly, rather overwhelming experience. When you walked into the convention center the giant main hall was primarily taken up by the "booths" of the different major biologic medications. I say "booths" because these setups weren't really booths. Really they were enormous, elaborate, and extremely swanky...pavilions? Areas? I don't even know. But they were fancy to the point where they had padded carpeting and you could feel the difference when you stepped into their area from the conference hall floor.
Nearly all of these booths had coffee bars giving away free espresso and sometimes desserts or snacks to conference attendees. I did decide to take the Enbrel booth up on a free latte. I figured they owe me at least that much after all these years! One of the medication booths even had an elaborate video game setup where you could "learn" about how their drug worked by playing a video game (though, ironically, if you actually took the time to read the facts and learn you totally lost the race. So I'm not exactly sure what they were thinking there.) The amount of money spent to design, create, and run each of these booths must be be simply astronomical. And while I do realize that a certain degree of advertizing is necessary from a business perspective, the whole thing just left me wondering whether that money could have been put to better use to somehow actually improve the lives of patients living with these diseases.
I also realize that ACR is a giant scientific conference primarily intended for medical professionals and scientists - not for patients. But, seeing as patients are the reasons the doctors and pharmaceutical companies have jobs in the first place, it was sort of interesting just how little patient presence there was. Creaky Joints and a few other patient advocacy groups were there, but they all had tiny little booths that were off to the side of the hall. I assume that this was due to cost considerations, but it was sort of symbolically interesting that the huge pharmaceutical booths were front and center while groups supporting the patients who actually take these medications were pushed over to the side.
During the few hours I had at ACR I had time to attend one talk about the current science surrounding methotrexate (ironically while beginning to feel nauseous from the dose of methotrexate I had take the previous evening. Fun times!) And while I also realize the point of most of these talks is to get doctors up to date so that they can do the best job possible helping their patients, I have to admit that it felt a little strange to be discussed as nothing more as a dehumanized number on a graph.
Ultimately I know that the rheumatology community is working very hard to help people living with rheumatic diseases. And I know was only able to explore the conference for a few hours. But it made me wonder whether there was anything that could be done to make patients more a part of this process - rather than pushing them to the side or seeing them as nothing more than consumers of medication. It would be nice to find a way to make patients seem, well, as human as the medical professionals attending these events.
Friday, November 21, 2014
Last weekend I kissed my babies goodbye, wished APL luck, and flew to Boston for the Joint Decisions Empowerment Summit.* The summit was an amazing opportunity to meet other RA bloggers face-to-face, including three other members of my RheumatoidArthritis.net team (Leslie, Angela, and Carla). Many of these people are the authors of blogs that I have been following for years, so it felt sort of like a chance to meet some of my favorite celebrities! I got to meet:
- Rheumatoid Arthritis Guy - one of the first RA bloggers I discovered when I started my own blogging journey over six years ago. A real superhero come to life!
- Wren of Rheumablog - who, in addition to her own journey with RA, has been following my blog and leaving me loving and supportive comments for years. So amazing to meet her in person!
- Spoonless Momma - another mama battling to have her family despite living with RA.
- Leslie from Getting Closer to Myself - diagnosed with lupus and RA while working towards her PhD, who now advocates for students living with autoimmune conditions
- Angela from Inflamed: Living with Rheumatoid Arthritis - who was diagnosed with RA just out of high school but hasn't let RA stop her from pursuing her passions
- Carla from Carla's Corner - who was actually diagnosed the very same month I was, but has already lived through hip, shoulder, and knee replacement surgeries
- Britt from The Hurt Blogger - who has been living with arthritis since she was a child and whose online advocacy efforts have been very inspiring to me
- Dina the Titanium Triathlete - a triathlete who doesn't let RA or her two total hip replacements stop her
- Amanda of All Flared Up - diagnosed with RA four years ago but not letting it change her outlook on life
- Cathy of The Life And Adventures of Cateepoo - another mama working to make the best life for her kids despite her RA
On the other side of the coin, it was totally bizarre to meet "strangers" who already knew so many intimate details about my life! Of course I know that when I blog I am purposely sharing the details of my life with the world, and I do often email or talk on Facebook with people who read my blog, but I haven't had very many opportunities to meet these folks in person. So it was strange - but also kind of wonderful - to meet people who I know understand what I am going through.
The first day of the Summit we shared our patient stories, and even though I was familiar with many of them through their blogs it was actually very powerful to hear these stories in person. The level of understanding and determination shared between everyone in the room was very uplifting and inspiring for me.
The second day of the Summit we were able to give some feedback about Joint Decisions, a webinar which is the collaborative effort of CreakyJoints and Janssen Biotech. Although these live webinars (and the subsequent recordings) are already great resources for people living with RA, it was great to be able to provide some feedback to help improve the series going forward. There's still one more webinar scheduled for January 14th called "Right Track RA: Helpful Tips for Continued Success in the New Year." (Register here if you are interested in joining!)
Though it was an extremely busy weekend of traveling (a week later I feel like I am still recovering!) it was a very positive and inspiring experience for me and I'm very glad I got to be a part of it. And though it was also a really nice break from my babies, I sure was happy to see all my boys when I got home!
*Janssen Biotech paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.
Wednesday, November 19, 2014
It has probably happened to everyone who has ever been diagnosed with RA. One day you start to notice that your medications don’t seem to be helping as much as they used to.
Monday, November 10, 2014
Monday, November 3, 2014
I've been reluctant to write about such a hot button topic, but it's also an issue that is extremely relevant to the members of this community. So I’m going to go ahead and discuss it: vaccinations.
Monday, October 27, 2014
A conversation that I had after picking OZL up from preschool today:
OZL: Can we go to the playground, please?
Me: Not today, buddy. Mommy doesn't feel so good.
OZL: Oh...did somebody bite you?
Me: No. I had to take some medicine and it made me feel a little bit sick.
OZL: Did you spit it out? Was it gross?
Me: Yeah. It was gross.
OZL: I will give you a hug. And I will play with you. Then you will be happy.
Yeah, little man, that sure did help!
Unfortunately, I'm still feeling horribly nauseous this morning. While I did remember that methotrexate has the potential to cause nausea (though I don't feel like it really did last time?) I couldn't quite remember what I am supposed to do about it. I emailed my rheumatologist, but he hasn't responded yet. So this prompted me to take a highly unrecommended action - I googled it.
Turns out methotrexate makes you feel nauseous not by irritating your stomach but by stimulating a receptor in the brain that causes nausea. And what can be done about it? (1) Take a folic acid supplement. (2) Ask your doctor for a prescription for zofran.
So.....It's like being first trimester pregnant. Forever?
All I can say is that I hope after a few doses the benefits begin to outweigh this nasty side effect. Because right now all I can think is: I made the horribly difficult decision to stop breastfeeding my baby....for this?!?!
I feel pretty discouraged right now.