April 24, 2015
Good news! My blog was named as one of Healthline‘s Best Rheumatoid Arthritis Blogs of 2015. I’m slide #4 on the list: http://www.healthline.com/health-slideshow/best-rheumatoid-arthritis-blogs#4
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.
April 24, 2015
And in good news…here’s an awesome group photo of us HealtheVoices patient/health advocates with a gorgeous view of Manhattan in the background. What an inspiring group of people! Can you spot me?
(Hint, I’m short)
April 20, 2015
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.
March 25, 2015
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:
Please contact Keith Olsen (who is extremely nice and helpful!) if you have any questions about participating:
Here are some quick facts and FAQs about the YourCareMoments program:
Zitter Health Insights is a specialized business intelligence firm that provides insights to biopharmaceutical manufacturers and health insurance companies related to the affordability of and access to medications. The project, YourCareMoments, provides insights into consumer habits, decisions and health care experiences. This is done through short online surveys that are sent to registered patients. Once they register, emails are sent with links to participate in the surveys. Surveys average about 5-10 minutes to complete and participants are paid per survey. The surveys can be completed on your computer or mobile device. YourCareMoments keeps in contact with each participant over time to follow when he/she will next see a doctor or pick up a prescription in order to survey the participants while the information is still fresh in their minds. Also, these are anonymous surveys so the patients never need to worry about their identities being shared–they will never be asked for their names or addresses.
How long are the surveys?
Surveys average around 5-10 minutes for completion.
How much money do participants make?
The amount of money earned depends on the type and length of the survey. Patients/registrants are informed how much each survey will earn before they take a survey.
What does YourCareMoments Insights do with the research?
The research is received and analyzed by YourCareMoments. The data is then sold to bio-pharmaceutical companies to help them gain insight to patient healthcare experiences, opinions and habits.
Is YourCareMoments contracted with any pharmaceutical companies?
YourCareMoments works with pharmaceutical companies, but they are not working directly for any specific company or drug.
Will YourCareMoments ever sell or share email addresses?
YourCareMoments will never sell or share participants’ email addresses, and they ensure that all information participants share is safe.
How are participants paid?
Because participants are never asked for names and addresses, they are paid via PayPal within 2-3 business days.
What are some of the questions in the surveys?
Examples include: What medications are you currently taking for your medical condition? Did the doctor prescribe you any new medications or increase your current medication dosage during your visit? Please describe your level of satisfaction with the amount of information provided about your new prescription, etc.
Who can sign up for the program?
Participants must be 18 years or older and living in the United States.
March 23, 2015
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.
Here’s a link to the photos if you’re interested:
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.
February 13, 2015
I just want to say…I really love giving all of my money to Fairview Health Services for my primary care. I mean, they deserve it. They always answer the phone right away and get me in for appointments quickly. They are so fast and efficient at RETURNING phone calls too, it’s amazing. I never have to call multiple times and repeat myself to several different customer service representatives/nurses/who-the-hell-knows-who-I’m-even-talking-to. No, of course not. If I call and leave a message for a nurse to call me back, she doesn’t forget me and ignore my message(s) and then never return my call until I have to call again, repeatedly taking up more time and effort and energy from my day(s). They are so considerate and on top of things and that’s why I happily give them large sums of my hard-earned money.
The nurses also never get any of my information wrong, like the medications I’ve had in the past, the history of my health issues, nor do they ignore the fact that I have a chronic illness–which makes primary care a bit more of a challenge than care for your “normal,” usually-healthy person. No, no–Fairview staff understand this and treat me with consideration and respect whenever I’m dealing with an additional illness or extra pain on top of living with the miserable symptoms and frustrations of RA.
So, let’s see here: I’ve had to go to my primary care clinic and urgent care 4-5 times within the last month, I think. Each visit costs me approximately $175.00 out of my pocket. I’d stop and do the math right now but it seems like a large enough amount and Fairview deserves as much as they can get for their excellent care, of course. So why even keep track? You know, I could probably start writing out insanely large checks each month or just send them my credit card to give some of their staff bonuses (especially the CEOs and Administrators) to help encourage and ensure the continuation of such personal, patient-driven, and fantastic care.
Might as well, right?
February 3, 2015
I’ve been having a flare-up for the last three days or so in both feet and ankles, hands, and my right wrist. My shoulder too, I think (sometimes it’s so hard to tell which pain is which). And, in great frustration (and pain), I’m out of pain medication. Once again these new, stricter FDA regulations on narcotics are causing me additional and unnecessary suffering. And I know I’m not the only one.
So, sorry for complaining, but I think this issue needs to be talked about. I’d also like to point out that if I had easier access to pain treatment (which is obviously legitimate and not abusive), I would not be missing work this week. I’m losing. My bank account is losing. Society/the economy is losing. And my sweet kindergarten students are losing their teacher.
Here’s a good opinion piece I read today from The Boston Globe by Donald N.S. Unger:
This hits home, unfortunately.