Help Advance Rheumatoid Arthritis Research

This post is sponsored by Acurian, a world leader in connecting people to local research studies.

It’s been more than eight years since my rheumatoid arthritis (RA) diagnosis, and today I’m very happy to have a treatment plan that is working well for me. It was a long and arduous process for me to get to this point, requiring me to try many medications including four different biologics. But, as difficult as it was for me to find a working treatment, none of it would have been possible at all without medical research.

While I’ve been personally lucky to find a working treatment, I know that is not the case for everyone living with RA – which is why continuing research is so important. Research studies are necessary for developing future treatment options, but research studies need volunteers in order to move forward.

Right now, rheumatologists are looking for people with RA to volunteer for local research studies. If you or a loved one have RA and have tried other treatments without success, joining a research study might be a good option to consider. Those who qualify may receive*

·       Payment, which varies by study, up to $625

·       No-cost study-related care from local doctors and specialists

·       No-cost study medication

To see if you qualify for a local RA research study, please visit: www.RAHealthandYou.com

In addition to the above benefits, you will also be helping to advance research for everyone living with RA. The more data that doctors and scientists have, the better treatment options can be developed. That’s the reason I joined a research study myself when I was pregnant with my second baby – so that future moms with RA would have better data and better options than I did. If we can continue to advance research, hopefully doctors and scientists can develop better treatment options for those of us living with RA.  

*In a clinical research study, the participants may receive investigational study product or may receive an inactive substance, or placebo, depending on the study design. Participants receive study-related care from a doctor/research team for the duration of the study. Reasonable payments will be made for participation and the length of the study may vary.

Chronic Illness & the Importance of Self Care – Especially for Moms!

My name is Mariah. I have rheumatoid arthritis but I love to ride my bike.

This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.

Self care – or intentionally making an effort to care for your physical, mental and emotional health – is extremely important for your overall well-being. It’s especially important if you are living with a chronic illness like rheumatoid arthritis, which already places a huge burden on your time and energy levels. And it’s even more important if you are living with a chronic illness like rheumatoid arthritis and you are the mother of a small and demanding human, or perhaps several of them!

I’ve sometimes seen the oxygen mask metaphor used to describe the importance of self care: you have to put your own oxygen mask on before you can help anyone else. While this is undoubtedly true, there’s a reason they remind you every time you get on an airplane – because you might try to hold your own breath and help someone else first, even if that turns out to be detrimental to your own well being. I think this is something especially easy for parents to do, because there are so many demands on your time and energy that it can actually seem like a good solution to let your own needs slide – or even get forgotten all together. Because children are needy, and if you are having trouble finding the time and energy to meet their needs, it can seem practically impossible to make the time for self care.

The thing is, if you don’t take care of yourself you won’t be able to take care of anybody else – no matter how much they may need you. For that reason, my favorite metaphor for remembering the importance of self care is this: you can’t pour from an empty cup. It’s physically impossible! If your cup is empty, you have to find a way to fill it up before you can possibly share with anyone else.

But I do know that making time to “fill your cup” is far easier said than done, especially for moms. That’s one reason that I find it so important to be connected to a self care movement. Sometimes you need someone to remind you just how important it is to take care of yourself. Sometimes you need validation that it’s ok to take time away from caring for your kids to care for yourself – it makes you a good mom, not a bad one! And, if you’re anything like me, sometimes you need to be assured that taking the time for self care is being productive! We need to give ourselves credit for whatever we are able to accomplish, no matter how insignificant it may at first seem.

That’s one of the reasons I started Mamas Facing Forward. I wanted to help moms (and moms-to-be) who are living with chronic illnesses embrace the challenges we face and learn to find strength from them. I also want us to be able to support and encourage each other as we brainstorm ways to keep facing forward – for our children and, more importantly, for ourselves.

Self Care Movement’s mission is very similar: to transform perspectives about chronic illness and the way we manage it. They want to help us celebrate the greatness in the ordinary accomplishments that we face every day – which I often find moms, in particular, need to be reminded of. Are your kids (mostly) clean and fed? That’s a major accomplishment (even if they are, in reality, covered in dirt!) Did you find the energy to take them to the park or zoo? That’s fantastic! But guess what? It’s also ok if you didn’t. It’s ok if you let them watch TV so you could take a shower or if you spent the afternoon reading books on the couch instead of playing outside. Do your kids know you love them? That’s what matters.

No matter what type of social media you prefer – Facebook, Twitter, or Instagram – you can get connected to the Self Care Movement online to help you remember the importance of loving yourself too. Now, if you’ll excuse me, it’s time for me to try to convince my four year old to eat something other than cheese and carbs for dinner! Then maybe I’ll have Daddy take care of bath time so I can take some time for myself and go on a bike ride…

Remedy - Saving Patients Money By Finding Errors in Medical Bills

This is a sponsored post for Remedy. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company. As stated in my product review policy, my reviews will always be honest.

So many of us - especially those of us living with chronic illnesses like rheumatoid arthritis - spend huge portions of our budgets on medical expenses. For example, my family paid more than $8,000 last year, out of pocket. It's a huge portion of our family's budget, so it's not only responsible but necessary for me to try to make some sense of my medical bills to make sure we aren't paying more than we should.

But did you ever get an "Explanation of Benefits" in the mail and wonder what on earth it is actually supposed to explain? There's a billion numbers and charges and codes and, even if you can manage to divine some meaning from it, it often looks nothing like the actual bill when that arrives. Not to mention that every medical provider's bills are organized differently. In the end, even experienced patients can find it extremely difficult to identify errors and overcharges. And, unfortunately for us, overcharges are extremely common.

Remedy is a company that helps patients save money by auditing your medical bills for errors and savings. They'll also advocate for you with your medical provider in an attempt to reduce your bill. Remedy is free to try - if they don't save you any money there is no charge. And, if they do find errors that results in savings for you, they only charge 20% of what they save you with a cap of $99. Remedy says they find mistakes on 70% of the medical bills submitted to them, which results in saving the average family $1000 per year. 

This sounded like something that could be beneficial to so many of my readers, so I agreed write this post. Shortly after I had agreed, I got some pretty hefty medical bills in the mail - both for myself and my husband. So I decided to give the process a try myself. 

It's super easy to get started. I visited www.tryremedy.com, clicked "Get Started," and entered my cell phone number. Within a few minutes I got a text welcoming me to Remedy. I had to go back to their site to submit my credit card information, but remember that there is only a charge if Remedy is able to find savings and if they do it won't be more than $99, so I figured that was worth it. I also had to take a photo of my insurance card and fill out a form to give Remedy permission to speak on my behalf with my medical providers. 

After that was all set up I started texting with my Remedy representative. Submitting medical bills is super easy - you just take a photo with your phone and text it to your representative. That's it! And since my husband and I are on the same insurance plan, I was even able to send photos of my husband's medical bills. Then there was nothing more to do but wait and see if they found any overcharges!

Although Remedy did not end up finding any errors or overcharges on our bills, it was very comforting to know that a professional had double checked everything for free. I will warn that the process can take a while - because Remedy often has to submit a bunch of forms, make phone calls, write letters, and wait for responses - so don't expect a result right away. However, in the meantime, my representative was always available give me updates when I asked for them. They were also very patient in explaining when I had additional questions. 

Overall, I think Remedy offers a very valuable service to patients - and if I ever have bills in the future that I am unsure about, I'll certainly be submitting them to Remedy for a second opinion!

MedNexus - A Search Engine for Patients

I was recently introduced to MedNexus, a new medical search engine, and asked to share my thoughts and opinions about the website.* Though MedNexus was originally launched as a search engine for doctors, the co-founders quickly realized that patients also need and want access to information about their own medical conditions. We all know that just typing our conditions or symptoms into Google doesn’t always lead to the most reliable information – so the idea behind MedNexus is to provide only quality search results from reliable sources.

When I visited MedNexus for the first time, I started by searching for information about rheumatoid arthritis. I was quite impressed when I had barely typed “rhe” and several useful topic suggestions were presented to me:

-       What Is Rheumatoid Arthritis?

-       How Do You Diagnose Rheumatoid Arthritis?

-       How Do You Treat Rheumatoid Arthritis?

-       What Are Lifestyle Tips For Rheumatoid Arthritis?

-       What Are Risk Factors For Rheumatoid Arthritis?

This seemed like a good start to me, so I clicked on “What Is Rheumatoid Arthritis?” to see what kind of information would be presented.

The next page had a variety of great information. In the left sidebar was a brief answer to the question under the heading “Explained.” I found the general information in this column to be accurate and a good, brief overview of what RA is. My only complaint is that I would have liked to know the source for this information and the statistics it included. I assume this summary information was provided directly by MedNexus, but that wasn’t exactly made clear. However, it is important to note that MedNexus is still in Beta, so their platform is still a work in progress - so perhaps this is an issue that will be updated in future versions.

The rest of the search results were divided into several categories: Health Topics, Published Research, Ongoing Clinical Trials, and Discussion Forums. Under Health Topics there were 102 results, which all seemed to be from highly reliable sources like the Arthritis Foundation and the Rheumatoid Patient Foundation. I thought it was great to have access to resources that had already been curated and deemed to be reliable. I also loved that the search provided a separate section with links to published scientific research. While I may not always be looking for this type of detailed information, it’s great to have a resource for finding such studies when I am. I also think that access to information about ongoing clinical trials and discussion forums could potentially be quite useful to patients.

Next I took a look at the information MedNexus had to offer on Rituxan (rituximab), the biologic medication I am currently using to treat my RA. Although there were fewer search results on this subject, the results that were presented seemed to be accurate and from reliable sources. 

Lastly, you all know that I am always looking for improved/increased resources on chronic illness and motherhood, particularly when it comes to treatment options that are safe for pregnancy and breastfeeding. So of course the last thing I did was to search for “rheumatoid arthritis and pregnancy” and “rheumatoid arthritis and breastfeeding.” The pregnancy search brought up a couple of published studies and a variety of natural treatment suggestions, none of which I found particularly helpful, unfortunately. The breastfeeding search brought up almost no results at all. Hopefully this is something that can also be improved in future versions of the site - perhaps by linking to resources such as the InfantRisk Center and Mother to Baby. Because I know for a fact that there are a lot of moms and moms-to-be out there who would really benefit from a reliable place to learn about pregnancy-safe and breastfeeding-safe treatment options for their conditions!

As I mentioned above, MedNexus is still currently in Beta – and the developers are always looking for constructive feedback to improve the experience. So if you decide to check it out, please consider taking this short survey to provide feedback and improve the site!

*I was compensated for the time I spent, but all thoughts and opinions are my own.

YourCareMoments: Get Paid To Provide The Patient Perspective!

This post is sponsored by YourCareMoments.

I’ve never done a sponsored post on this blog before. It’s not because I haven’t been interested. While I don’t want my blog to be overrun with advertisements, I do love the idea of being able to use my lemons to make lemonade (babies are expensive, yo!) And it’s not because I haven’t been given the opportunity. As my blog has grown in popularity, I’ve received a lot of emails asking me to promote products or publish guest posts. But I’m not particularly interested in endorsing products I haven’t tried or people I don’t know.

That’s one of the reasons I was so impressed when Keith Olsen from YourCareMoments reached out to me. YourCareMoments is conducting research about the affordability and accessibility of medications for RA patients. They collect the patient’s perspective through short online surveys, which participants are paid to take. This data is then provided to pharmaceutical and health insurance companies so the patient’s perspective can be taken into account. 

Instead of asking me to blindly support their research, Keith spoke with me on the phone and invited me to try YourCareMoments myself. I took a few surveys – they were quick and easy to follow – and I was promptly paid for my time. Keith has also been extremely responsive in listening to any feedback I have had to offer afterwards. 

So I’ve decided to share this opportunity with my readers! You can help provide the patient’s perspective AND get paid to do it!

How does it work?

Once you register with YourCareMoments, you will receive emails with links to participate in paid surveys after you see your doctor or pick up a prescription, when the information is still fresh in your mind. The surveys can be completed on a computer or mobile device. YourCareMoments will never ask for your name or address – the surveys are all anonymous. And if you have any questions or concerns along the way you can email or call Keith directly!

How long are the surveys?

Surveys take about 5 to 10 minutes to complete.

What do the surveys ask about?

Here are some sample questions: What medications are you currently taking to treat your rheumatoid arthritis? Did the doctor prescribe you any new medication or change your dosage during your visit? Please describe your level of satisfaction with the amount of information provided about your new prescription.

How much money to participants make?

The payment depends on the type and length of the survey. You will be informed before each survey how much you will earn.

How are participants paid?

Because YourCareMoments never asks for your name or address, participants are paid via paypal within 2-3 business days. 

What happens to the information participants provide?

The data will be analyzed by YourCareMoments and then sold to pharmaceutical and health insurance companies to help them gain insight into patient health care experiences, opinions, and habits. YourCareMoments works with pharmaceutical companies, but they do not work directly for any specific company or drug. 

Who can sign up?

Participants must be 18 years or older and living in the United States. In particular they are looking for patients who have been diagnosed with rheumatoid arthritis and prescribed Actemra, Cimzia, Enbrel, Humira, Orencia, Remicade, Simponi, or Xeljanz. If you are interested, you can register here: www.yourcaremoments.com