Friday, September 7, 2018

Mamas Facing Forward is Finally Live!!

It has been a loooooong time coming (since I launched the Mamas Facing Forward Facebook group in 2015!) but I'm proud to officially announce that www.mamasfacingforward.com is finally live! 


The internet is teeming with advice for moms and moms-to-be, but when it comes to the unique challenges faced by moms living with chronic illnesses, the resources seem to be few and far between. Mamas Facing Forward is dedicated to addressing this very important unmet need.

While not meant to replace the advice and guidance of doctors on these topics, Mamas Facing Forward endeavors to be a "one stop shop" for moms and moms-to-be who are living with chronic illnesses and have questions or concerns about pregnancy and motherhood. We want to make existing resources easier to find and work towards creating additional resources where they are needed. We want moms with chronic illnesses to know they aren't alone and that help is available. 

The Mamas Facing Forward Mission

To help moms and moms-to-be living with chronic illnesses embrace the unique challenges we face and learn to find strength from them. To provide resources, support, and encouragement to keep facing forward - for our children and for ourselves.


Or find us on social media!



Monday, September 3, 2018

August Articles for Rheumatology Network

My assignments for Rheumatology Network include reporting on recent scientific studies about rheumatoid arthritis and other related diseases. Although these articles are intended primarily for a physician audience (and thus can get a bit technical and jargon-y) I know patients are also interested in scientific advances - so I still want to share links to these articles! But if you ever have additional questions, please don't hesitate to let me know!

Identifying populations at risk may provide opportunities for primary prevention.  

This dietary pattern has already been shown to reduce overall mortality, cardiovascular disease, and cancer. Do the benefits extend to RA?

Wednesday, August 1, 2018

July Articles on Rheumatology Network

My assignments for Rheumatology Network include reporting on recent scientific studies about rheumatoid arthritis and other related diseases. Although these articles are intended primarily for a physician audience (and thus can get a bit technical and jargon-y) I know patients are also interested in scientific advances - so I still want to share links to these articles! But if you ever have additional questions, please don't hesitate to let me know!

Two Early Life Risk Factors for Hip Osteoarthritis
Two newly identified factors may raise the lifetime risk of symptomatic OA that requires total hip arthroplasty.

6 Things Mothers With RA Wish You Knew
A wish list for doctors from patients with rheumatoid arthritis who are—or who want to become—mothers.

Thursday, July 12, 2018

The Tag*a*long! Product Review and Giveaway!

Tag*a*long is providing products for this giveaway, but the company did not influence the content of this review in any way. As stated in my product review policy, my reviews will always be honest.

When my second kiddo came along, a dear friend bought me a Tag*a*long. I'm not going to lie: at first I thought it was a very silly piece of plastic. I'll just take the double stroller, I thought. Or I can just have him hold my hand or the strap of the diaper bag. Why would I ever need a special little handle?

Of course, it didn't take me long to realize that my solutions weren't very effective or particularly practical, especially for someone living with rheumatoid arthritis (RA). The double stroller was bulky and heavy, making it physically difficult to handle when my RA flared postpartum. I also didn't love that my older son basically refused to walk, even for short distances, if we had the double stroller with us. But trying to hold his hand while pushing the single stroller with one hand wasn't good for my wrists. And I'm sure no seasoned mom will be surprised to hear that my son wasn't particularly interested in holding on to the strap of the diaper bag.

Enter the Tag*a*long: a bright, shiny, simple plastic handle that I presented my son with enthusiasm and announced it was especially for him! And it worked! Somehow having a designated handle to hold made him feel special. It was fun for him to hold and soon he was happily walking along next to the stroller. I was amazed.

Fast-forward nearly four years: I thought we were done with the Tag*a*long. My middle son was nearly four when his sister was born, and he is perfectly capable staying near me while we are walking without me having to worry (too much!) But what I did not anticipate was how often he would beg to push his sister's stroller, and how, ahem, enthusiastically he would push it. Sometimes I let him push, but sometimes it just isn't practical to let him be in command of a wheeled object with his poor sister strapped to it! So once again the Tag*a*long stepped in! It allows my son to feel like he is helping and like he is connected to his baby sister, while still allowing me to be the one in control of the stroller!

The Tag*a*long also gives him a sense of safety and security in crowded situations - which gives me as sense of safety and security! Those of you who follow me on Instagram know we took a road trip to South Dakota a few weeks ago. It was very crowded when we stopped to visit Mount Rushmore, so my middle kiddo voluntarily hooked himself to his Tag*a*long. He felt safe, which left me able to enjoy the memorial instead of being distracted by kid-wrangling!


While the Tag*a*long could potentially be useful for any mama, I think moms with chronic illnesses - who may have limited energy or mobility - could find it particularly useful. Moms with chronic illnesses have much better uses for our very limited energy than trying to chase our kids (which sometimes isn't physically possible for us) or reprimanding them to stay nearby or worrying about them wandering off! I even saw the brilliant idea on Instagram the other day to attach the Tag*a*long to your cart at the grocery store (why didn't I ever think of that one?!?) 

So I'm very excited to announce that I'll be giving away two Tag*a*longs! Please enter the giveaway below and I will randomly select two winners next week!


Or, if you don't want to wait, you can grab a Tag*a*long on Amazon!




Friday, July 6, 2018

6 Things Mothers With RA Want You To Know

In my newest article for Rheumatology Network, I was asked to write about what mothers with RA wish their doctors knew. With the help of some amazing mamas in my Mamas Facing Forward group, we created a "wish list" for our doctors.


What do you think? Did we miss anything?

Thursday, July 5, 2018

Rheumatology Nurse Practice: Family Planning & Pregnancy Issues in RA

A few weeks ago I shared on Instagram that I recently had the opportunity to write an article on what women wished their rheumatology teams had told them before getting pregnant for Rheumatology Nurse Practice - the magazine published by the Rheumatology Nurses Society. I was thrilled that they wanted to include the patient perspective, and very happy to have the opportunity to share not only my insights but also some gathered from other mamas in my Mamas Facing Forward group. 

In addition to including the patient perspective, I think RNS has managed to create a MASTERPIECE of information on pregnancy with rheumatic disease that was completely missing when I started my own path to motherhood. The issue includes an explanation of the FDA's new medication labeling system for safety during pregnancy, current data on DMARDs during pregnancy, the importance of encouraging patients to join pregnancy registries, real experience from rheumatology professionals managing their patient's pregnancies, advice for new parents living with RA, and even a pull out poster with current clinical recommendations for the use of various medications during pregnancy. 

I'm over the moon to see this issue getting so much detailed attention - and I hope that this magazine ends up in the hands of many rheumatology professionals! And, for patients who might want to take a look themselves, I'm happy to report that the issue is now available for free online! 

Sunday, July 1, 2018

A Decade of Living With RA

I've been so busy recently that it would have been really easy to let this anniversary slip by unnoticed - maybe part of me even wanted to. But I am now 35 years old and I have officially been living with RA for ten years

I've also been blogging about RA for a decade - and I've come a long way in that time. Some of you have been with me almost since day one, some of you found me years later, or maybe you just discovered this blog recently. But, for anyone who wants to remember or learn what the last ten years have been like for me, you can take the trip down memory lane that I just took myself:










I have to admit, re-reading the first few years after my diagnosis was rather difficult for me to look back on. While I've certainly accepted RA as a part of my life at this point - and I know it has even helped me identify new passion and a career helping others who live with chronic illnesses - reading the words I wrote ten years ago reminded me about who I was back then. And how unbelievably hard it was to watch my life change so drastically. How monumentally frustrating it was to live in a body I felt I couldn't control. How scary it was to look in the future and feel like I had no idea where I was going and what my life might be like. But I've come a long way since then.

Today my career as a freelance health writer has continued to expand. This year I wrote for RhuematoidArthritis.net, Rheumatology Network, Women Magazine, NewLifeOutlook RA, Arthritis Today magazine, and Rheumatology Nurse Practice. I was interviewed by Healthline, did a Healthline video interview, was featured in the U.S. Pain Foundation's INvisible Project, was included in a list of health advocates to follow by HealthCentral and another list by Everyday Health, and I had the opportunity to share my voice a few times in Arthritis Today. I've now been listed as one of Healthline's Best Rheumatoid Arthritis Blogs for seven years in a row.

Over the course of my tenth year with RA I volunteered at JA Camp and traveled to conferences and advisory boards in Dallas, New York, San Diego, Phoenix, Austin, and Chicago. I launched into public speaking a bit more this year too - something I hope to continue doing going forward.

My Facing Forward series finally came to a close after interviewing over 100 individuals living with invisible chronic illnesses, representing more than 110 different diseases and and conditions. My Mamas Facing Forward Facebook group has grown to 900+ members from all over the world and continues to grow. I was very excited to receive a grant to launch mamasfacingforward.com - which will hopefully be up and very running soon!

Most important of all, we welcomed a baby girl to our family in January! 


We had a bit of a rough start - as I had to be re-hospitalized for three days when mZL was less than two weeks old, and she had to spend a night at the Children's Hospital at four weeks - but at least my third pregnancy was significantly easier than my first two.

It is absolutely amazing to see how much the research has changed between my first baby and my third. With OZL, I struggled through pregnancy essentially untreated and stopped nursing him at three months to start taking Enbrel again. With CZL, I struggled through most of my pregnancy untreated until things got so bad that I was forced to re-start Enbrel during my third trimester, even though the safety data wasn't as good at the time as it is now. I breastfed him while taking Enbrel, but I think my RA had gotten so out of control during pregnancy that it still wasn't enough, and I weaned him at three months also. 

With mZL I switched from Ritixan to Cimzia prior to trying to conceive. I stayed on Cimzia all through my pregnancy and I'm still taking it today. mZL is now five months old and we are still breastfeeding. I've had to add a bit of prednisone (my favorite!) to the Cimzia to keep me functional, but for the most part I am actually doing quite well physically. I think this is primarily thanks to being able to actually treat my RA while going through pregnancy and while breastfeeding postpartum. 

I am so glad that moms and moms-to-be today have many more options for actually controlling their diseases while pregnant and breastfeeding, and I truly hope things continue to improve for mamas going forward. This quick advance in data is in large part due to women being willing to participate in studies. I participated in two - one for Enbrel, one for Cimzia - through Mother to Baby, and if you are considering pregnancy with a chronic illness I highly encourage you to do the same! You might even end up helping yourself down the line!

While I am doing pretty well physically, those of you who follow me on Instagram may know that I've been struggling a bit emotionally. Between the needs of three kids during summer vacation and breastfeeding longer than ever before (which is both wonderful and challenging!) and trying to keep up with my work despite very little summer childcare and the never-ending housework I think it's easy to see how I've been a bit overwhelmed lately!

I retreated to the mountains alone this weekend (which is how I found time to write this post in the first place!) and I know after this break I'll feel a bit better about being home this evening. (I'll certainly be happy to ditch the pump in favor of my baby girl!) I have to admit, while August 15 seemed ridiculously early for the school year to start, now I'm sort of feeling like it can't come soon enough! Jokes aside, I do think things will calm down and settle into a good routine once school starts again. I'll have more time to focus on my work and myself, and that will be very good. And we all love baby mZL to bits so I couldn't possibly have it any other way.

Here's to the next decade! From This Point. Forward.

Thursday, June 28, 2018

Arthritis Today: How has a loved one supported you?

I'm always happy to be able to contribute to Arthritis Today - this time I was especially thrilled to have the opportunity to share how much my own mom has helped me manage motherhood with RA. And it's always an honor to be featured alongside other amazing advocates - this time my friend Carla of Carla's Corner and Sheryl of A Chronic Voice

You can read the full piece here.
 
I'm also excited that the link to mamasfacingforward.com is featured in the magazine! Hopefully that will help direct more moms and moms-to-be living with arthritis to the site! I'm making good progress and hope to have the real resources launched very soon! Stay tuned!

Thursday, June 21, 2018

June Articles on Rheumatology Network

My assignments for Rheumatology Network include reporting on recent scientific studies about rheumatoid arthritis and other related diseases. Although these articles are intended primarily for a physician audience (and thus can get a bit technical and jargon-y) I know patients are also interested in scientific advances - so I still want to share links to these articles! But if you ever have additional questions, please don't hesitate to let me know!

Hyperuricemia remains the leading risk factor, but the runners-up may surprise you.

Tuesday, May 22, 2018

5 Things Patients With RA Want Their Doctors to Know

In my newest article for Rheumatology Network, I used my own experience and interviews of other patients living with RA to create a "wish list" of things patients with RA which their doctor's knew!