3 Strategies for Parenting With Chronic Illness

Here are three strategies for parenting with chronic illness:

Strategy 1: fill your own cup first. ☕ 

Strategy 2: plan in advance! 🗓️

Strategy 3: connect for support! 🫶

“If you’re trying to get pregnant, you kind of have to have sex”

When I first started thinking about getting pregnant after being diagnosed with rheumatoid arthritis, I desperately wanted to hear from other women who had succeeded in this goal. At the time, there wasn’t much social media, but I did find a great book called Arthritis, Pregnancy and the Path to Parenthood. It contained quotes and advice from real women, and I found it invaluable.

But I also found a problem: the book started off talking about the possibility of having to change some of your medications before getting pregnant and then jumped straight to talking about being pregnant. But wait! If I stop my medications, won’t I flare? And if I’m in pain, how do I ever get pregnant in the first place? Is there a chapter missing from this book on trying to conceive while living with arthritis??

That’s the question I asked Iris Zink, a rheumatology Nurse Practitioner who recently wrote a book about intimacy and chronic illness with Jenny Thorn Palter. (The book is called “Sex – Interrupted” and you can read my review of it here!) Their book recommends a lot of alternatives to intercourse – which I think is generally great advice for for maintaining intimacy in a relationship while dealing with a chronic illness! But what if you want to start a family? If you’re trying to get pregnant, you kind of have to have sex!

Iris and I decided to have a discussion about a topic we haven’t seen anyone else talking about: the challenges many women face in actually trying to conceive while living with a chronic illness. I share my personal experiences, and Iris shares her expert advice in this video!

4 Women Get Real About Living with Rheumatoid Arthritis

Your immune system is supposed to protect your body, but if you have rheumatoid arthritis (RA), it mistakenly attacks healthy joints, tissues, and organs—including the eyes and lungs. As a result, the chronic autoimmune disorder causes pain, swelling, stiffness, and loss of function in the joints. It can also cause other symptoms including fatigue, appetite loss, and dry eyes.

RA affects 1.5 million Americans, and there is no cure. But it can be managed with medications and lifestyle modifications.

Women’s Health

 

Women’s Health magazine featured four women – including Mamas Facing Forward founder Mariah Leach – who discuss being diagnosed with rheumatoid arthritis, how they each cope, and what they’ve learned from living with RA.

4 Women Get Real About Living with Rheumatoid Arthritis

Women’s Health

 

Colorado Lawmakers Debate Bill Surrounding Prescription Drug Prices

A little late sharing this, but I was recently interviewed by Shaun Boyd on CBS4 News (via Zoom!) about the new prescription drug affordability board bill being considered in the Colorado state legislature.

You can view the news clip here.

Children's Book Review: How Many Marbles Do YOU Have?

Perhaps one of the most challenging aspects of motherhood with chronic illness is helping your children understand what is going on with your body and encouraging acceptance about how your illness may impact them. How can you help them develop empathy about what you're experiencing, especially if your illness is invisible? Where's the line between being honest and making them worry? What's the best way to address their concerns in kid-friendly language? This is a topic that will likely need to be an ongoing discussion in your family - and sometimes reading a book together can help!

Click below to read a review of "How Many Marbles Do YOU Have? Helping Children Understand The Limitations of Those With Chronic Fatigue Syndrome and Fibromyalgia" by Melinda Malott. 

Children's Book Review: How Many Marbles Do YOU Have?

Mamas Facing Forward

My Life with RA: Mariah Zebrowski Leach

In some strange ways, I think RA helped prepare me for motherhood. Being diagnosed with RA taught me the importance of realistically allocating my time and energy – giving myself credit for what I can accomplish and letting go of guilt for unfinished tasks.

Mariah Leach

RheumatoidArthritis.net interviewed me about living with rheumatoid arthritis for over a decade and my experiences with motherhood.

My Life With RA: Mariah Zebrowski Leach

RheumatoidArthritis.net

3 Tips for Achieving Big Life Goals While Living with Chronic Illness

The uncertainty that comes with diagnosis of a lifelong chronic illness can make it feel really difficult to plan in advance. But living with a chronic illness shouldn’t mean giving up on life goals that are really important to you...As an example of how to approach big life goals while living with a chronic illness, I’m going to use what seemed like a pretty outrageous goal that I set for myself in 2016: riding in the Arthritis Foundation’s California Coast Classic.

Mariah Leach

In this article I share some of the strategies I used in completing my goal of riding my bike 525 miles in the Arthritis Foundation's California Coast Classic - and how you can apply these same strategies to achieving big life goals while living with chronic illness.

3 Tips for Achieving Big Life Goals While Living with Chronic Illness

Mamas Facing Forward

Children's Book Review: Aunt Barby's Invisible, Endless Owie

A special kind of guest is coming to visit! Aunt Barby has an invisible, endless owie - but there are lots of things to help her feel better when she visits. With fun cartoon illustrations, this book explains to children that while the owie may never go away, neither will the love for them. 

Today we're featuring our review of "Aunt Barby's Invisible, Endless Owie" by Barby Ingle & Tim Ingle - and we're giving away a copy of the book over on Instagram!

Children's Book Review: Aunt Barby's Invisible, Endless Owie

Mamas Facing Forward

Black Maternal Health

In honor of Black History Month, I wanted to take a moment to recognize the disparities that Black mothers are still facing today when it comes to maternal healthcare. 

At school, my kids primarily learn about Black History Month in terms of events that have happened in the past – so when we talk about these issues at home, I always try to create a link and make them aware of the disparities that continue to exist today. It reminds me that I, too, have a lot to learn about these inequalities – and what we might be able to do to address them. I hope you will use the resources I’ve provided below and take some time this month to learn more about Black maternal health.

Black Maternal Health

Mamas Facing Forward

The Role of the Mamas Facing Forward Facebook Group in the Chronic Illness Community

In their open-ended answers, many participants spoke about not wanting to feel isolated or alone, and shared how they wanted to be connected to real people going through similar experiences. We linked this desire for emotional support with the idea of community. While only 10 women chose emotional support as their primary motivation for joining the group, more than three quarters of the women included at least one answer that we thought discussed community.  

Mariah Leach

 

This article is based on a presentation I gave at the virtual American College of Rheumatology Annual meeting on November 8, 2020. This article shares some of the conclusions we've drawn from the open-ended answers of our survey.

 

See Part 1 of this presentation: Survey Shows Moms with Chronic Illness Need More Support From Their Doctors.

The Role of the Mamas Facing Forward Facebook Group in the Chronic Illness Community

Mamas Facing Forward