Thank you so much to everyone who reads my blog and supports me and what I do! I’m forever grateful for the wonderful friends I’ve met through my little blog and for being part of the online RA and patient advocacy communities.
I’m in Brooklyn, New York right now, trying to figure out what the hell I’m doing. And why I’m doing it again. I had a really awful day yesterday, mostly because of my health insurance company in Minnesota admitting that they gave me completely WRONG information regarding me having health coverage here in New York City. It’s a long story and I’m too tired to go into it now, but basically I’m stranded here without health care. And my rheumatologist in Minneapolis is in China now for two weeks, so it’s pretty difficult to reach him. I’m working with his nurse though. Hopefully another doctor can help me.
So, ah, just saying hi from New York. I’m alive…barely! ha ha. Prayers, good thoughts, etc, are very welcome right now. I need them. I was crying my eyes out for hours yesterday. :(
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.
About a month or so ago I began participating in an ongoing patient research study about RA called YourCareMoments. How it works is I basically fill out a short survey after each time I see my rheumatologist or get RA prescriptions filled at the pharmacy or have any kind of RA-related treatment. The feedback from the surveys is then used by YourCareMoments to help inform pharmaceutical companies about what’s going on with patients who have RA–their experiences and opinions regarding doctor appointments, getting their RA medications, starting new medications. I do receive a small monetary compensation each time I complete a survey (about $6-7 per survey), which is nice, but what I really like about the program is that pharmaceutical companies are getting feedback directly from the patients who use their products. I think this is one good way to help bridge the gap that exists between patients and the huge pharmaceutical industry (which often has a bad reputation for not being very patient-friendly).
The pharmaceutical companies need to hear from patients and hear what the experiences are in their daily lives living with RA. Because RA is such an unpredictable and ever-changing disease, and it’s very specific from person to person, I believe it’s important for as many voices to be heard as possible, and that’s why I support this program. I want pharma to know what it’s like when I have my rheumatology appointments. I want them to know the hassle I sometimes have trying to get certain medications. They need to know that access to care and treatment and medications is often very difficult for RA patients. So! I want to let you, my readers, know that I’m participating in this program and I would like to extend a friendly invitation to anybody else who has RA who would also like to participate. So far I’ve had nothing but good experiences taking the surveys and working with YourCareMoments. It’s easy, convenient, and fast–I recommend getting involved if you have a few extra minutes to spare each week/month.
You can register to start receiving surveys by going here:
I finally finished editing the photos I took at The Walk to Cure Juvenile Arthritis a couple weekends ago. The event is an annual 5k walk that brings out tons of people to raise money to help find a cure for Juvenile Arthritis and support the kids and families who live with the disease. This was my fifth year photographing the walk for my local Arthritis Foundation chapter, and as always, it was great to see all of the people who participated in the event and to be surrounded by so many people who are dedicated to and passionate about arthritis advocacy.
I, myself, was diagnosed with RA when I was 18 (although I started having symptoms at age 17), so I was on the cusp of juvenile vs adult rheumatoid arthritis. My pediatrician gave me a preliminary diagnosis and immediately sent me to see an adult rheumatologist who I stayed with for the next 10 years. During the end of my teen years and into my 20s, I lived a very isolated and lonely life regarding my RA. I didn’t know any other teenagers or college-age people with the disease and spent these young years battling the physical and emotional pain essentially alone. To say it was hard would be a big understatement.
Volunteering at the walk this year, like the previous years, it made me feel happy to see all of these young people and their families coming together to support each other, and to nurture the friendships and relationships they’ve made over the years, as well as forming new ones. It breaks my heart to think of little kids having to deal with the intense, debilitating pain of RA, but I do feel better knowing that many of them are not alone.
Well, maybe I shouldn’t have said something so soon. Sadly and frustratingly, I’m back on prednisone–5 mg. My right foot and ankle are flaring up again (seriously, what is WRONG with THAT foot and ankle?!). I see my rheumatologist on Thursday so we’ll see what he says about it.
And in other painful health news, I’ve been battling a bad case of gastritis (I think) for over a week. Thanks to omeprazole (Prilosec), and an anti-nausea drug, and severely limiting my diet, it seems to be getting better. What relief! The constant nausea (with some vomiting) and stomach pain has been so horrible. But on the bright side, I have been losing weight. This isn’t exactly the weight loss plan I had imagined for myself, however. Another good forced diet change: no Diet Coke or caffeine!
And in GOOD NEWS, I went on my first bike ride a couple days ago! I had to make a few stops and take breaks (I’m weak from sickness and not eating hardly anything and not exercising all winter), but it felt so good. It was a lot colder out today so I chickened out, but I hope to go on another ride very soon.