"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.
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!
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!
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.
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!
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
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.
Happy New Year! I'm honored to kick of 2020 by sharing that I've been featured on Everyday Health's list 10 Arthritis Blogs to Watch in 2020. It's an honor to be featured alongside these other amazing bloggers, who are both honest and uplifting when it comes to life with arthritis.
I was recently lucky to have the opportunity to travel to Atlanta, Georgia to attend the 2019 American College of Rheumatology Annual Meeting (ACR). While it was my sixth year attending the conference, this was the first time I attended officially representing Mamas Facing Forward and as a Patient Partner with the Arthritis Foundation. I'm very glad to have had the chance to represent patients at this important conference - particularly those who are or want to become parents.
Arthritis Foundation Patient Partners getting to work at ACR!
I'm pleased to share that there were multiple sessions at ACR this year focusing on issues of reproductive health for rheumatic disease patients - many more than in previous years! I will have some detailed articles about some of those sessions in the coming weeks. In the meantime, I wanted to share a just a little bit about the experiences of patients at ACR this year.
The Arthritis Foundation had a booth in the exhibit hall at ACR featuring posters from their patient partners - to help conference attendees understand the importance of the patient perspective and the real human impact of rheumatic diseases. In my poster, I shared the impact that rheumatoid arthritis has had on my family - and on the process of starting my family.
At the Arthritis Foundation booth in the Exhibit Hall at ACR
My poster at the Arthritis Foundation booth in the Exhibit Hall at ACR
The Arthritis Foundation blog published several articles featuring the perspectives of their Patient Partners at ACR this year. You can find them here:
I also took the opportunity to chat with the folks at MotherToBaby about the important work that they do. MotherToBaby is the nation’s leading authority and most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding. You can learn more about MotherToBaby here.
With Linnette Dyer at the MotherToBaby booth in the Exhibit Hall at ACR.
Lastly, while I was at ACR I had the opportunity to record a podcast with the International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA). The podcast focused on society's expectations for moms and the importance of pregnancy planning when living with a chronic illness - and how medical providers can help with this process. I'll be sure to share more when the podcast goes live!
Recording the AiArthritis Voices 360 Podcast with Tiffany
Westrich-Robertson and Deb Constein of the IFAA and Linette Dyer of
MotherToBaby
It was a very exciting conference, particularly as it serves as proof that resources and support is starting to improve for moms and moms-to-be living with chronic illnesses! More detailed information to follow!
This information is brought to you by Mamas Facing Forward and is not sponsored by, nor a part of, the American College of Rheumatology.
As
a researcher and mother to two girls who has experienced being diagnosed with cancer
post-partum, I have a unique understanding of the challenges of making personal
health decisions when growing a family.
From
Nevena:
As
a pharmacist and researcher, I am all too familiar with the lack of information
on the safety of medication use in pregnancy and I want to change this
narrative.
To
do this, we need your help!
We
reached out to Mariah to help spread the word about our research study on how
women with rheumatoid arthritis make decisions about taking medications before
and during pregnancy. Our research has shown that women with rheumatoid
arthritis will often stop medications when they become pregnant1 and that they are turning to online communities for
support and advice about using medications during pregnancy2. We know that finding the right information about
taking medications to safety and effectively manage rheumatoid arthritis is
challenging and we want to take the stress out of this process by helping
healthcare teams better support women so that they can focus on their
pregnancies.
If you are a womanliving anywhere in Canada, are between 18-50 years old, have a diagnosis
of rheumatoid arthritis, and can communicate in English or French, please
consider participating in their study. Your participation will involve a focus
group and/or individual interview conducted online, over the phone, or
in-person and you will receive a $25 gift card for each interview you
participate in as a token of appreciation.
For more information,
please contact Nevena Rebić, the study coordinator, at: nevena.rebic@ubc.ca or 604.822.5697.
ABOUT AUTHORS:
Dr. Mary De Vera, PhD
is an Assistant Professor at the University of British Columbia and Canada
Research Chair in Medication Adherence, Utilization, and Outcomes. She is an
expert in medications and pregnancy in arthritis.
Nevena Rebić, BSc(Pharm)
is a pharmacist and health services researcher at the University of British
Columbia who is committed to supporting women access quality reproductive
health information and services.
Photo description: Dr. Mary De Vera (right), Louise Gastonguay (centre,
French Study Coordinator), and Nevena Rebić (left).This study is the team’s baby.
