Friday, October 16, 2020

Healthline Live Town Hall: Healthcare Policy Edition

I recently had the opportunity to participate in Healthline's Live Town Hall: Healthcare Policy Edition. (Disclosure: I was compensated for my time and expertise.)

Americans are so stressed about healthcare services and costs these days. This Town Hall discussion featured healthcare industry officials and patient advocates to have a non-partisan discussion of the healthcare issues that matter most in the upcoming election. Check out the full Town Hall Discussion below.

I've heard patient advocates say "vote like your life depends on it" - because it does! 

Get out there and VOTE!

Wednesday, September 30, 2020

US Pain Foundation Multidisciplinary Care Panel

This morning I had the opportunity to participate in a panel for the US Pain Foundation. The panel featured patient advocates living with various types of chronic pain, and we discussed the need for access to multidisciplinary care, as well as the many, many barriers patients face in receiving the care they need.

You can see a recording of the discussion below!

My pain journey

A panel discussion with four individuals with chronic pain, moderated by CEO Nicole Hemmenway.

Posted by US Pain Foundation on Wednesday, September 30, 2020

Tuesday, July 7, 2020

12 Years of Rheumatoid Arthritis Pain Has Taught Me Invaluable Life Lessons


RA has taught me invaluable lessons. Because of my varying pain and energy levels, I’ve learned to ask for help when I need it—it’s just one of the countless ways I've grown by living with RA. Here are a few more that I think may just help anyone living with RA or chronic pain.

Mariah Leach as told to Madeleine Burry
In this Woman's Day article, get to know the founder of Mamas Facing Forward as she shares her journey after being diagnosed with rheumatoid arthritis.

12 Years of Rheumatoid Arthritis Pain Has Taught Me Invaluable Life Lessons

Woman's Day

Friday, May 22, 2020

How I Am Staying Calm and Resilient during the Pandemic (or at Least Trying To!)

"For some of us, we no longer have access to daily help we rely on, whether that’s childcare or someone who helps with household tasks or, in my case, both. Many of us are missing routine appointments that help us manage life with RA, like physical therapy, massage therapy, exercise class, or talking to a therapist. And I know I’m not the only one who feels worried that COVID-19 represents extra risk for people living with chronic illness. For a lot of us, this pandemic has been a time of much-added stress and anxiety, so I wanted to share some of the things I am doing to help myself stay calm and resilient."

In this article, I share 5 things I am doing to try to stay calm and resilient during the pandemic.

RheumatoidArthritis.net

Wednesday, May 20, 2020

About IBD Podcast: I Evaluated What Was Really Important To Me

I was thrilled to be invited as a guest on Amber Tresca's About IBD Podcast. While I don't personally live with IBD, we talked about how the experiences of chronic illness patients have so much in common - regardless of the actual diagnosis - particularly when it comes to parenting with a chronic illness.

Amber asked me to share how being diagnosed with rheumatoid arthritis led to starting my blog, From This Point. Forward, which eventually led to the patient advocacy work I do today. It was my own experiences with pregnancy and motherhood that lead to creating the Mamas Facing Forward Facebook group and this website. We also chatted about how challenging life in quarantine can be, and I shared my plans for Stay Home Summer Camp - the first menu will be posted on Friday, May 22nd! I hope you'll take a listen!

Click here to listen to About IBD Podcast Episode 71: I Evaluated What Was Really Important To Me


Sunday, May 3, 2020

Tips for Homeschooling during Quarantine from a Mom of 3

Around the world, parents and caregivers are finding themselves staring down the calendar at extended school closures – and even the possibility that schools won’t resume at all this year....As a mom of 3 small children – ages 7, 5, and 2 – who also works part-time from home, trying to figure out how I’ll manage my work and homeschooling is very overwhelming. And, as a mom living with rheumatoid arthritis, the challenges I face in managing my own health and energy levels make the situation even more complicated.
Mariah Leach, RheumatoidArthritis.net
In this article I offer 4 tips for homeschooling during COVID19 quarantine - including ways to build in mini-breaks for yourself!

Tips for Homeschooling during Quarantine from a Mom of 3

RhuematoidArthritis.net

Tuesday, April 14, 2020

American College of Rheumatology Releases First-Ever Reproductive Health Guidelines

Due to everything that has been going on in the world recently, I am rather behind in sharing this exciting news - but that does not diminish the importance of this development!

In February, the American College of Rheumatology released its first-ever guideline on managing the reproductive health of patients with rheumatic diseases. This means, for the first time ever, rheumatology healthcare professionals have an official set of evidence-based clinical practice guidelines to turn to when deciding how to counsel patients who are or wish to become pregnant. 

Thursday, April 2, 2020

Staying Connected to Kids When You Can’t See Them In Person

While we are all at home, I'm obviously quite busy juggling my three kids, who are now 7, 5, and 2. It's a lot of work for sure! 

But I know there are plenty of people who have to be separated from children that they care about, whether it's their grandchildren, nieces and nephews, godchildren, or the children of close friends. These relationships are important - both to the child and to the adult - so I've written an article with some ideas for staying virtually connected to kids when you can't see them in person. 

And if you have kids of your own? Maybe you can forward this article to friends and family members and earn yourself a little break!

RheumatoidArthritis.net

Friday, March 13, 2020

LaGrippe Research Opportunity for Patients with RA or PSA

I wanted to share an opportunity to participate in paid research with LaGrippe Research for patients living with rheumatoid arthritis or psoriatic arthritis. 

I've communicated with Alex Lampe at LaGrippe Research, who told me that all information shared through this study will be used for research purposes only, and will be kept strictly confidential. This is not a clinical trial and at no point will anyone be selling anything. The study itself is a double blind study. Results will be used to advance knowledge, marketing, and understanding within the field of arthritis research. 

As an additional disclosure, LaGrippe has agreed to compensate me $25 per person who qualifies through the link below and participates in the study. If I receive any compensation for this project, it will go towards funding additional resources for Mamas Facing Forward - I am particularly interested in having funding so I can pay the writers that contribute to the site! 

Here is the info from LaGrippe about the study:

Hi! We're LaGrippe Research and we're currently working on an Rheumatoid/Psoriatic Arthritis Study. We're looking for individuals who wish to share their personal journey with arthritis to participate in a 45-minute web assisted phone interview. Those that qualify and participate will be compensated $100 as a thank you. We will be conducting these interviews March 16th through March 31st.

If you are interested, please fill out our preliminary questions online here: https://www.surveymonkey.com/r/NWZY73V 

If you have any questions, please contact Alex at 224-360-7929 or email alexander@lagripperesearch.com 


Wednesday, March 11, 2020

Rheumatology Nurses Society Psoriatic Arthritis Project

I wanted to share an opportunity for patients living with psoriatic arthritis (PsA) to contribute to a project with Rheumatology Nurses Society (RNS). I agreed to spread the word because I think RNS is a great group of healthcare providers doing important work towards giving patients more of a voice within healthcare, and I think the program they are offering could be beneficial to patients living with PsA. I have not been compensated for sharing this information. Here is the information I have been given about this project:

We are launching a brand-new program this month that is entitled Dear Diary: Unlocking the Secrets to Better Care of Patients with Psoriatic Arthritis. We are looking for 50 patients with psoriatic arthritis who are interested in participating in this 12-week initiative.

In this program, patients will complete a weekly online diary entry where they will be encouraged to write about a variety of topics related to their disease. Weekly prompts will offer suggestions on various topics to tackle, but participants will have the flexibility to write about anything on their mind that is related to their disease. Please note that, at least in this initiative, we are only enrolling patients with psoriatic arthritis. There may be opportunities for patients with other rheumatic conditions in the future.

Each enrolled patient will be paired with one or more healthcare providers. These providers will not receive any information related to the identity of any patient beyond their first name. They will only receive an email when their matched patient has submitted a diary entry, and they will then be asked to write a response. Due to privacy concerns, provider responses will not be shared with participating patients directly. However, our project administrator (me) will review all diary entries and compile an electronic document at the end of this project that contains a variety of patient diary entries and provider responses so that all participants can get a sense of what patients with psoriatic arthritis have been writing about and how the healthcare provider community responded to some of the challenges they have been reading.

Our hope is that participants will find that jotting down their feelings and emotions while emptying out some of the clutter in their head will be extremely helpful. Our hope is that participants will submit one weekly diary entry during each week of this project. It is OK to skip a week or two as personal circumstances arise, but we’d like to find participants who will be as active as possible on our platform.

Anyone interested in participating in this project can click here (https://www.surveymonkey.com/r/KNP8575) to enter their contact information. We hope to complete enrollment and begin this project within the next 2 weeks, so someone will contact folks who register shortly. If anyone has any questions or would like any further information, they can feel free to contact Sadie Montanus, RNS Education Coordinator, at sadie.montanus@rnsnurse.org.