My Journey to Motherhood with Rheumatoid Arthritis


I will be 40-weeks pregnant tomorrow, April 8, 2019 which is also my official due date. I will soon be giving birth to my first child, a sweet baby girl who we will call Cecilia Evelyn. As I reflect on the last 9-months of my life, I realize so many things have changed already, but not in comparison to the changes that will soon take place as my husband and I transition to the other side; parenthood. I thought I’d share so many things throughout my pregnancy journey with my readers on this blog, but writing takes time and I haven’t given myself the time to do it. The following is a piece that I wrote back in November when I was just 17-weeks pregnant. I promise to update y’all sooner than later with the next post. 🙂

I’m currently on the most exciting physical and emotional journey of my life… The journey to motherhood with Rheumatoid Arthritis. My husband and I met and then married later in life after a relatively short courtship – I was 36 and he was 39 when we married St. Patrick’s Day weekend, exactly two years after we first met. If you didn’t already know this, anyone over the age of 35 is considered geriatric and is at higher than normal prenatal risk in the OBGYN world. That said, we knew we wanted to try for a child right away. Having an autoimmune disease seemed like a double negative notch in my already geriatric belt.

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I started pregnancy conversations with my Rheumatologist well before we conceived. We modified my treatment plan to cultivate the healthiest space possible for our sweet little baby to be. Since I was diagnosed with RA at the age of 23, I’ve taken more combinations of drugs than most people can imagine. And over these past 14 years, Xeljanz has been the only drug that worked over an extended period of time, helping limit and sometimes even eliminate flares altogether for months at a time. Plus, Xeljanz allowed me freedom from methotrexate which is (basically a form of chemotherapy) and needles (no more self injections). I just had to swallow a daily Xeljanz pill… ah it was the dream. But unfortunately, there is not enough research to prove that Xeljanz is safe during pregnancy which meant I had to revert back to a drug that was safe for the baby but less effective in managing my pain, inflammation and flare ups. Because having a child has been a lifelong goal, I was 100% willing to sacrifice my own health, comfort and sanity for that of my child’s. Still, I have to admit that weaning myself off of Xeljanz after 5 years of success was scary. Especially since I was replacing it with Enbrel, a drug that stopped working for me twice, several years back. Not only did Enbrel stop working for me previously, but I had experienced some of the worst flares of my life on Enbrel. However, the hopes of creating a family with my husband didn’t discourage me from moving forward.

My Rheumatologist recommended I stop taking Xeljanz altogether, let my body detox and then start Enbrel after some time had passed. The simple thought of not being medicated was terrifying, but the positive outweighed the negative, so my journey to motherhood began. Three months into Enbrel, I started seeing my old friend inflammation again. But I also quickly became PREGNANT!!

As I write this, I am 17 weeks pregnant and have to say that the joy of my road trip to motherhood has overshadowed almost every symptom and flare caused by my RA. It helps me stay positive and power through the pain, the sleepless nights and the inflammation that would otherwise bring me down like it has most of my last 14 years since I was diagnosed. I cannot wait to hold my baby girl in my arms for the first time in April.

 

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Rheumatoid Arthritis Travel Tips


Will you soon be traveling with Rheumatoid Arthritis? If you’re like me, flying often leads to flare ups so I wanted to provide some tips that will help ensure that you travel as smoothly as possible.

 

  1. Pack Light. Preplan all of the clothing you will need for your trip well in advance of packing and make a list. Bring clothing that can be mix and matched throughout you trip. I tend to fill my bag with basics that can go from day to night. Example list: 2-3 cotton dresses, jeans, jean jacket, scarf (that can double as a blanket on the plane), a couple of solid tees and tanks, and a cardigan sweater. I bring one clutch purse, one pair of cute, supportive tennis shoes that can be worn with a dress or jeans and one pair of dressier sandals that can also go to the beach. PROTIP: I recently purchased the Adidas Cloudfoam Advantage Womens White sneakers on Google Express for $35!! Did I mention cloudfoam? They are amazing and wearing them literally makes me feel like I’m walking on clouds.Screen Shot 2018-11-24 at 12.22.30 PM
  2. Choose your Suitcase Wisely. Select a light weight 9”x22”x14” suitcase that can be checked or carried onto an airplane and has 360 degree roller wheels for easy maneuvering around the airport. Many experts recommend that you push rather than pull your suitcase and use both hands to alleviate pressure on your neck, arms and shoulders. PROTIP: If you don’t own a roller bag, you can ask a porter for assistance or utilize a rolling cart provided at the airport.
  3. Pre-plan potential medical needs. We all know RA and corresponding flares can be unpredictable, so packing your regular medications might not be enough. Try to prepare for the worst case scenario by packing prednisone (just in case), compression socks (my new favorites from Amazon– see photo below) & gloves and travel sized pain relief ointments such as Tiger Balm or Punch Gunk. If you are checking a bag, make sure your meds stay with you, in a carry-on bag.IMG_3207
  4. Are you traveling with syringes? You will need an ice-pack, cooler bag and a doctors note. I recommend having TSA hand check your syringes rather than sending them through the x-ray machine. Also, make sure the hotel you’re staying at has a refrigerator you can use for storage upon arrival. PROTIP: Enbrel offers a free travel pack to patients. Click here for more information.
  5. Book an aisle seat and stay hydrated. It’s important that you get up and stretch your legs a few times throughout a long flight. Plus, you’ll want to drink lots of water to stay hydrated which means lots of trips to the bathroom which can be most easily accessed if you book an aisle seat. Make sure to bring an empty water bottle with you through TSA, so you can fill it up before your flight.
  6. Carry an assistant. Consider a folding cane or walker if you need assistance walking. These also come in handy when you’re visiting monuments or tourist destinations with super long lines. PROTIP: Fashionable Canes offers travelers really fun designs that can be folded to fit in your back pocket when you’re not using it, for about $30.
  7. Carry healthy snacks: Most of the time, airports and airlines offer high fat foods and snacks to passengers. That said, I make sure to pack my bag full of healthy snacks, such as a protein bar, banana, tangerine, granola bar, etc. It’s inevitable that I’ll splurge on yummy/naughty foods throughout my vacation, especially if the timing coincides with the holidays, so I prefer to load up on healthy stuff until I arrive.

 

 

Don’t let traveling with Rheumatoid Arthritis stress you out… Travel is one of my absolute favorite things in life! It just takes a little more planning and preparation for spoonie folks like us.

Living with Rheumatoid Arthritis? Take care of yourself


I recently had the honor of being featured in Health Monitor Magazine‘s Arthritis issue for sharing some tips and tricks for living with Rheumatoid Arthritis so wanted to share that information with you all here, too.

Get a Good Night’s Sleep

“When I get limited sleep, my body feels it,” says Katie. So she talked with her doctor about her “Sleep hygiene” – a new concept to her. “I removed all screens [TV, computer, phone] from my bedroom. Now I plug my cellphone into the kitchen where I can still hear the alarm. It’s made a dramatic change in my sleep habits – which has helped to minimize my flares”.

Try Yoga!

“Yoga has helped tremendously at keeping me mobile and flexible,” says Katie, who actually teaches yoga when she’s not at her advertising job. “It’s also helped ease the frustrations that come with having fatigue and chronic pain. I first started practicing after I was diagnosed with RA 15 years ago. I’ve learned how to modify my poses. If my hips are feeling bad, I can sit in a chair and do a number of stretches that will help me.” And if yoga is out of the question on a difficult day? “Listen to your body! Do meditation to get the mental benefit without the physical strain”. On her site, katiestew.wordpress.com, Katie writes: If you allow your practice to take over your mind and your body, you can truly escape to a place where pain and other negative feelings are non-existent… even if just for an hour.

Travel Smartly

Newly married, Katie ordered a medication travel kit to take with her on her European honeymoon. “That way, airport security is less likely to give me a hard time about my syringes,” she says (she’ll travel with a doctor’s note, as well). The kit, which is free from the maker of her medication, includes an ice pack, small sharps container and a bag of alcohol wipes inside a lunch box-sized insulated bag.

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Real Yoga for Beginners


I first ventured into a yoga studio during my early 20s. I was drawn to the idea that yoga would allow my mind to relax through meditation while also doing physical activity that wouldn’t take a toll on my body that was riddled with pain, stiffness and exhaustion due to Rheumatoid Arthritis. At that time, I didn’t know how many forms of yoga existed nor which form would be most accommodating for someone like me with an autoimmune disease. Boy, did I have a lot to learn. I showed up in sweats and a baggy t-shirt to a hot yoga studio at 6PM on a Monday evening to “relax” after a long day at the office. As I watched a mix of very fit ladies and 1 man pile into the studio, wearing almost nothing, I immediately wondered what the heck I had just gotten myself into.

10 minutes into my first hot yoga class, I felt like I was fighting for my breath and maybe even my life. Sure, the last point sounds dramatic, but I had a vision of an ambulance taking me out of that class after I realized there were still 60 MINUTES left on the clock. The teacher instructed us not to drink water, not to deviate from the poses and not to leave the room, even if we were exhausted, dizzy, uncomfortable, etc. I wanted to cry and hide under my yoga mat because I couldn’t keep up with everyone around me. What a nightmare!

Fast Forward 15 years and a certification in yoga teacher training later, I’ve learned so much since my first hot yoga class in my early 20s. I now know that yoga offers something for everyone who wants to explore its incredible benefits. Some folks seek yoga solely for the workout, but I practice for many different reasons such as mental relaxation, spiritual meditation, stretching sore muscles and getting a gentle full body workout.

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I recently came across Costa Yoga’s “From the Ground Up” video series on teachable.com and want to share this incredible program for beginners with my readers so they can avoid an experience like mine, showing up at a yoga studio or class that’s not meant for them. This video series was designed for people who want to start a yoga practice, but don’t know where to begin. It’s great for those who want to reap the benefits of yoga, but from the comfort of their own homes. Additionally, the teacher Mandy Lawson is fabulous. She is smart, thorough and helps students build a complete yoga practice foundation in just 30 days.

Namaste,

Katie

We’re Having a Baby!! Any advice for Pregnant Gals with Rheumatoid Arthritis?


I am so incredibly thrilled to announce that my husband and I are expecting our first child… a baby girl due April 8, 2019! Beyond the obvious, over-the-moon, can’t stop smiling excitement, I look forward to sharing updates with my readers along the way about pregnancy with Rheumatoid Arthritis.

In the meantime, I’d love to hear any advice y’all might be willing to share. We all know Rheumatoid Arthritis is incredibly challenging on the body, but I’m dying to know more about RA during pregnancy. I’ve heard that some ladies go into remission while pregnant while others don’t. Would love to hear from you all on the good, the bad and the ugly related to pregnancy with RA.

Namaste-

Katie

#CureArthritis


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Derek Belisle (Marketing Director, Arthritis National Research Foundation) and Katie Stewart-Singh (KStew Vents about RA) at the 2018 Meet the Scientists Event

I had the privilege of attending the Arthritis National Research Foundation’s annual Meet the Scientists event last night in Newport Beach, CA. As a volunteer, I oversaw the selfie booth. Before I go on a tangent about how every event should have a selfie booth, let me gush about how amazing this organization is.

The Arthritis National Research Foundation funds research to cure arthritis and is one of the only arthritis organizations that focuses solely on funding research. Their grant recipients are early-career MD and/or PHD scientists with innovative ideas that need funding to launch their research and make the next breakthrough.

Quick facts from CureArthritis.org:

About their research:

  • Over 250 scientists funded since 1970
  • Their arthritis research projects have led to new information and treatments
  • 10-20 grants per year – $15 million in research awards since 2000
  • World-renowned Scientific Advisory Board of physician-scientists

About their commitment to excellence:

  • 4-Star Charity Navigator rating for 9-straight years, placing the foundation in the Top 1% of US charities
  • “Outstanding” as ranked by independent scientific panel
  • On average, over 90% of every donation is placed into research programs
  • In 2017, ANRF achieved the Platinum Seal of Transparency from Guidestar. Only 5% of the 32,000 nonprofits listed in GuideStar have achieved this ranking.

In addition to making great strides towards curing arthritis, the team is comprised of some of my favorite people I’ve met in the Arthritis community. I first met Helene (Executive Director) and Derek Belisle (Marketing Director) when researching the organization in 2011. Derek agreed to meet me for coffee in Long Beach where we had a great conversation and discussed some of the research projects they were funding. Soon after meeting Derek, he introduced me to his Mom, Helene who has been the Executive Director of the organization these past 22 years. Helene has taken the organization from being able to fund 1-2 researchers a grant of $50,000 per year to being able to give an amazing $100,000 to 12-25 scientists per year! And although Helene will be retiring this week, her legacy will carry on for many, many years to come. Last night, Derek shared an extremely heartfelt dedication to his Mom as her retirement became official. As Derek’s speech went on, my dinner napkin became my tissue, and I realized there was not a dry eye in the room.

From Nicole Dalton being our charming and hilarious master of ceremonies last night to Dr. James Louie’s enlightening presentation about artists with arthritis, such as Pierre Auguste Renior, Raoul and John Outterbridge, to having great conversations with Dr. Jason Knight, Lupus researcher, ANRF grant recipient and fellow Midwesterner at my table, I cannot say enough great things about this group!

HERE’S WHAT I’M GETTING AT…The Arthritis National Research Foundation is an organization I TRULY feel good standing behind! So if you’re looking to fund arthritis research (rather than overhead, red tape and nonsense programs), I would strongly encourage you to make The Arthritis National Research Foundation your go-to charity!

#CUREARTHRITIS #MEETTHESCIENTISTS

I’m proud to be an Accessible Yoga Ambassador


Hey y’all! I’m proud to announce that I recently became an Accessible Yoga Ambassador and am looking forward to making yoga accessible to all underserved communities throughout Los Angeles’s South Bay area via my company, South Bay Yoga Therapy.

South Bay Yoga Therapy specializes in yoga modifications for those with limited mobility, injuries and chronic pain in individual or group settings. Offering chair yoga, relaxation and meditation techniques, our commitment is to focus on the every kind of body and mind.

Contact us today for more information:

  • Website: southbayyoga.org
  • Email: katie@southbayyoga.org

Namaste-
Katie

Accessible Yoga Meme