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:

 Year 1

Year 2

Year 3

Year 4

Year 5

 Year 6

Year 7

Year 8

Year 9

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.

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!

News!

Those of you who follow me on Instagram will likely have already seen this news, but it just occurred to me that I hadn't yet announced it here! I actually blame the news itself for my lapse in brain power haha! ~;o)

We're expecting an addition to the family - and it's a girl!

The whole family is very excited, especially my five-year-old son, who had spontaneously asked me for a baby sister on multiple occasions. He keeps running up to kiss my belly at random times during the day. It's really the sweetest thing ever. His three year old brother was mostly just happy we broke the news with a pink frosted cookie, ("can I have another sister cookie pweese??") but even he seems to be adjusting to the idea and getting excited.

I'm currently about 14 weeks along and, for the most part, doing ok. Definitely still dealing with more morning sickness than I would like, but not quite as bad as the last time around (when I actually lost weight from vomiting so often). I certainly have some aches and pains, but this seems normal to pregnancy for the most part.

Considering what happened with my RA during my last pregnancy and after consulting with a perinatologist, I've made the decision to stay on Cimzia during most of my pregnancy. Cimzia is a TNF inhibitor, which are now generally considered quite safe for use while pregnant. I ended up using Enbrel last time around, which is also a TNF inhibitor. I had actually planned to go back to Enbrel this time, as it is a biologic that has been around for quite a while (a lot longer than Cimzia), I had already used it during a pregnancy, and I had at least some reason to think it would likely work for me. However, due to my insurance plan's step therapy policy, I was forced on to Cimzia. 

The perinatologist and I were both gearing up to fight my insurance - but before we launched our attack she did a bit more research on Cimzia. Although there is a lot less data on this newer biologic, she discovered something about the structure of the Cimzia molecule. It turns out that Cimzia lacks the antibody that is responsible for placental transfer. In English, this means that (at least in rodent models) none of the drug was transferred across the placenta to the baby. So, by happy bureaucratic accident, it seems I have ended up with what may be one of the safest TNF inhibitors for pregnancy. It's working relatively well (though not as well as the Rituxan, I'll admit) so I'm sticking with it for now. And I certainly already joined the Mother to Baby study to contribute our data to future moms-to-be!! 

Baby girl will be a planned C-section at the end of January. At some point in the future, I'd be happy to write more about how we made the decision to expand our family - because given my own health it certainly wasn't an easy one. I'm also happy to discuss my medication research and decision in more detail too. Though I plan to try to stop the Cimzia during the third trimester - so the baby can have live vaccines when she's born - I'll likely re-start soon after delivery and use it while breastfeeding too.

In the meantime, we're all enjoying watching my belly grow (and with baby number 3 it's definitely already growing!) The boys can't wait to feel her kick! And I promise to try to keep you posted on how things are going from now on!

Managing RA Pain

Pain is one of the main invisible symptoms of life with RA, so I've contributed to a RheumatoidArthritis.net video discussing different ways to manage pain.

What do you think? How do you manage pain?

How to Entertain Kids When You’re Not Feeling Well

Keeping kids safe, clean, fed, and entertained can be exhausting – even when you are feeling your best. So how do you manage when you’re sick? 

Here's 6 ideas I came up with that might help! Read more at Mango Health!

Mamas Facing Forward Around The World!

Although I have a lot of really wonderful friends who became first time moms right about the same time that I did, my path to motherhood was actually quite lonely. Because of my rheumatoid arthritis, I had to deal with a variety of difficult situations that my other mom friends never had to face. I had to wean off medications for months to make it safe to conceive. I had to try to get pregnant while living with untreated RA. I had to deal with flares during my pregnancies and make difficult decisions about taking medications while pregnant. I had to figure out how to change diapers and lift my baby safely when my hands and wrists ached terribly. I had to make heart wrenching decisions about whether to breastfeed or take stronger medications to treat my RA. And I had to do it all basically alone - because at the time there weren't even very many blogs or places online where I could get connected to other women who were having similar experiences.

After going through all that on my own, I really wanted to share my story so that other women would feel less alone on their own paths to motherhood. So I shared my experiences of conception, pregnancy, breastfeeding, and motherhood on this blog and also on RheumatoidArthritis.net and other sites. It wasn't until the first HealtheVoices Conference in April 2015 that I realized I might be able to utilize social media to do more. At the conference I also met many individuals who were living with other types of chronic illnesses, and I realized just how much we had in common with each other even though we didn't live with the same diseases. So it also occurred to me that I might be able to create an even bigger network of support if I included all types of chronic illnesses. 

So I launched Mamas Facing Forward just about a year and a half ago. Since that time, the group has grown to include over 400 moms who are living with various types of chronic illnesses - and it continues to grow every day! The goal of the group is 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 want us to support and encourage each other as we brainstorm ways to keep facing forward – for our children and, even more importantly, for ourselves. I truly hope that the women in the group feel less alone and more supported than I did on my own path to motherhood and I hope to be able to continue to develop resources for additional support. I know that I have personally benefited from being connected to other moms who understand what I am going through! Because motherhood is hard - and chronic illness makes it harder!

Though I did dream of creating a big network of support, one thing that never occurred to me was how far the impact of the group might reach. I recently found out just how far by offering the mamas in the group the chance to add their location to a world map. It turns out that members of Mamas Facing Forward can be found in at least 30 U.S. states, Canada, England, Ireland, Belgium, Australia, New Zealand, Malaysia, South Africa, Uganda, Senegal - and the pins on the map only represent about a third of the group's members! 

I'm amazed to see just how far we have been able to reach - and I'm excited to continue leading a community that helps moms figure out how to keep facing forward despite chronic illness.

If you're a mom living with a chronic illness (or want to become a mom someday!) PLEASE JOIN US!

 

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…

Mamas Facing Forward – A Community to Help Mamas Facing Chronic Illnesses Move Forward

When I realized that there seemed to be no resources addressing the unique challenges of motherhood with a chronic illness, I decided to start one of my own.

Read more at RheumatoidArthritis.net.

Click here to request to join Mamas Facing Forward!

Babywearing for Parents with RA

After more than 4 years of wearing both of my boys, I honestly can’t imagine motherhood without the benefits of babywearing.

Read more at RheumatoidArthritis.net.

How To Handle Parenting With Rheumatoid Arthritis

I'm pleased to announce my first guest post for another great RA support site: NewLifeOutlook|RA!

From an RA perspective, I felt so alone when I started my journey to pregnancy and parenthood. Since then I've worked hard to try to provide and encourage more resources on this topic - so that future parents-to-be with RA will feel less alone than I did! 

So I'm always pleased to be asked to write about a topic that is near and dear to my heart: How To Handle Parenting With Rheumatoid Arthritis.

My 8th RA Annivesary

I can hardly believe that it's already time to write my next RA anniversary post! It has now been eight years since I was diagnosed with RA in June of 2008. And my how my life has changed since then!!

My older son just turned four at the end of May, and it's hard to believe but the "little" one will be two in just a few weeks! My boys are rambunctious and completely full of life - and they take up most of my spoons every single day! I am still treating my RA with methotrexate and Rituxan, though I have had to reduce the time between my Rituxan infusions from six to five months. Hopefully this will continue to be a good method of treatment for me for the foreseeable future.

I've been working hard this year to expand my advocacy and awareness efforts. In addition to the writing I've been doing for RheumatoidArthritis.net (and various other Health Union sites), I also did some guest posts for Mango Health and Scary Mommy this year. I participated in several Joint Decisions events, including a webchat on Becoming Your Own Health Advocate, the second Empowerment Summit, a live web chat with host Matt Iseman, and a Facebook chat about Raising a Family While Living With RA. I also attended the American College of Rheumatology Annual Meeting for the second time, as well as summits and advisory boards with Pfizer, Janssen, and Lilly. For the second time I volunteered as support staff for the Arthritis Foundation's California Coast Classic (while APL rode for the third time). I was also exited to return to the second HealtheVoices conference, and I've been thrilled to support the amazing Kirsten Schultz as she develops the Chronic Sex chat and website.

Like last year, I've continued to be pretty active in the media. I was interviewed by the New York Times, HealthCentral, HealthMonitor's Guide to RA, the Colorado Statesman, the Daily Camera, and I also participated HealthCentral's Managing Your RA: Big Picture photo shoot. The Facing Forward series on this blog has been expanded to include not just people living with arthritis but also other invisible chronic illnesses - and I've been learning a lot from reading all the submissions! My Facebook support group for moms with chronic illnesses, Mamas Facing Forward, is growing by the day and turning out to be a wonderful community of optimism and support.

This coming year is likely to be pretty crazy, as I want to continue my writing and advocacy efforts as much as possible. In addition to focusing on supporting moms (and moms-to-be!) living with chronic illnesses, I also want to get back to working with the juvenile arthritis community (and, in fact, in the next few months I'll be speaking at both JA Conferences and volunteering as a counselor at JA Camp again!) I've also signed up to try riding myself in the 2016 California Coast Classic, and I finally busted out my dusty old law degree by agreeing to help write the 5th edition of International Environmental Law in a Nutshell. Also? Raising two crazy little dudes! So it's looking to be a very busy year! Wish me luck!

From This Point. Forward.

HealthCentral - Managing Your Rheumatoid Arthritis: Big Picture

I was recently featured in HeathCentral's "Managing Your Rheumatoid Arthritis: Big Picture" photo gallery. Check it out to see some gorgeous and inspiring photos of people living with RA!

For my section, I really love the shot of me with my boys - especially my little dude's glorious blonde curls. As I told APL, if anyone goes near him with scissors I WILL DESTROY THEM! ~;o)

Our Favorite Apps!

I’ve been threatening to do this for a long time and I finally got around to it! Here’s a list of our favorite apps – because guess what? Sometimes mama needs a break!!!

A good many of these apps are free! As for the ones that cost a few dollars, we certainly didn’t pay for all of them. Many we got for free through Starbucks or AppGratis or similar promotions. But, in general, I think most of these are worth the money OR they offer enough of a free demo to be entertaining for free.

[NOTE: Every app marked ** can be played on the first generation iPad with the old operating system!!]

For babies:

·      I Hear Ewe – by Claireware Software (free) **

·      Laugh & Learn Learning Leaders Monkey App – by Fisher-Price (free) **

·      Laugh & Learn Shapes & Colors Music Show – by Fisher-Price (free) **

·      Laugh & Learn Animal Sounds – by Fisher-Price (free) **

·      Laugh & Learn Storybook Rhymes Volume 1 – by Fisher-Price (free) **

·      Laugh & Learn Storybook Rhymes Volume 2 – by Fisher-Price (free) **

·      Laugh & Learn Storybook Rhymes Volume 3 – by Fisher-Price (free) **

·      Music Box – by Sago Mini ($2.99) **

For toddlers:

·      Lego Duplo Train – by Lego Systems (free)

·      Lego Duplo Food – by Lego Systems (free)

·      Starfall ABCs – by Starfall Education (free) **

·      ABC Train – by Knox Apps (free) **

·      Friends – by Sago Mini (free) **

·      Vehicles Games for Toddlers and Kids – by Stefano Frassi (free) **

·      Lotto matching – by Tiny Hands (first few levels free; unlock $3.99) **

·      Towers 1 – by Tiny Hands (first few levels free; unlock $3.99) **

·      Towers 2 – by Tiny Hands (first few levels free; unlock $3.99) **

·      First Words 1 – by Tiny Hands (first few levels free; unlock $3.99) **

·      First Words 2 – by Tiny Hands (first few levels free; unlock $3.99) **

·      What’s my Pair 1 – by Tiny Hands (first few levels free; unlock $3.99) **

·      What’s my Pair 2 – by Tiny Hands (first few levels free; unlock $3.99) **

·      Sorting 1 – by Tiny Hands (first few levels free; unlock $3.99) **

·      Sorting 2 – by Tiny Hands (first few levels free; unlock $3.99) **

·      Trucks – by Duck Duck Moose ($2.99) **

·      Pepi Tree – by Pepi Play ($2.99) **

·      Interactive Alphabet – by Piikea St. ($2.99) **

·      Sago Mini Ocean Swimmer – by Sago Sago  ($2.99)

·      Endless Alphabet – by Originator Inc. ($6.99) **

For preschoolers :

·      Starfall Free – by Starfall Education (free) **

·      Preschool Games – Farm Animals – by Innovative Investments (free)

·      Toca Kitchen Monsters – by Toca Boca (free) **

·      First Words Sampler – by Learning Touch (free) **

·      Little Matchups ABC – by Innovative Investments (free) **

·      Geoboard – by Clarity Innovations (free)

·      The Ugly Duckling – by Potrus Interactive Fun (free)

·      Goodnight Safari – Polk Street Press (free)

·      Connect the dots – by Tiny Hands (first few levels free; unlock $2.99) **

·      Sorting 3 – by Tiny Hands (first few levels free; unlock $3.99) **

·      What's my Pair 3 – by Tiny Hands (first few levels free; unlock $3.99) **

·      Town Center – by Tiny Hands (first few levels free; unlock $3.99) **

·      Raccoon Treehouse – by Tiny Hands (first few levels free; unlock $4.99) **

·      Endless Reader – by Originator (first few levels free; starter pack $5.99) **

·      Endless 123 – by Originator (first few levels free; starter pack $6.99) **

·      Endless Wordplay – by Originator (first few levels free; starter pack $6.99)

·      Draw with Curious George – by Houghton Mifflin Harcourt ($0.99) **

·      Little Writer – by Innovative Mobile Apps ($0.99) **

·      Kids Preschool Puzzles, learning shapes and numbers – by Milen Kirkov ($0.99)

·      Build A Truck – by Duck Duck Moose ($1.99) **

·      Monkey Preschool Lunchbox ($1.99) **

·      More Trucks – by Duck Duck Moose ($2.99) **

·      Toca Life: Town – by Toca Boca ($2.99) **

·      Toca Kitchen – by Toca Boca ($2.99) **

·      ABC Food – by Peapod Labs ($2.99) **

·      Easy Music – by Edoki Academy ($3.99)

·      Green Eggs and Ham – By Oceanhouse Media ($3.99)

·      First Words Delux – by Learning Touch ($4.99)

Any Age:

·      Talking Baby Hippo – by Outfit7 Limited (free) **

·      Kids Doodle – by Bejoy Mobile (free) **

·      Fireworks Arcade – by Big Duck Games (free)

·      Draw with Stars –by L’Escapadou (free)

·      Balls – by iotic (free)

·      BoomKLAKers – by Funky Bots ($1.99) **

·      Tayasyi Tangram – by Tayasui.com ($1.99)

·      Petting Zoo – Animal Animations – By Fox and Sheep ($2.99) **

Joint Decisions Facebook Chat - Raising a Family While Living With RA

Join us today as I host the first ever Joint Decisions Facebook Chat! The topic is one that you all know is near and dear to my heart: Raising a Family While Living With RA!

Head on over to the Joint Decisions Facebook Page to submit any questions you may want to ask me - and I'll start answering them live at 2pm ET! 

Hope to chat with you later!