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!

2017 Update: Biologics in Pregnancy and Breastfeeding

The exciting news is that the trend seems to be moving towards more and more safe options for women with RA who want to get pregnant or breastfeed their babies! So if you’re considering a pregnancy while living with RA, make sure you know all your options.

Read more at RheumatoidArthritis.net!

Facing Forward Series Draws to a Close

Some of you may have noticed that last Friday came and went without my usual Facing Forward feature. The reason is that I've decided it is finally time to retire the series and move on to something else (mainly my work on the new Mamas Facing Forward website!!)

But before I move on completely, I wanted to take a minute to reflect back on the last two and a half years spent interviewing individuals living with various chronic illnesses. The Facing Forward series was intended to share the lives of people living with invisible chronic illnesses. In addition to spreading awareness, I wanted to help all of us see how we are similar and how we are different - and to remind everyone to keep moving forward, because none of us are alone!

Since my very first interview published on March 8, 2015 (my own!), the series has featured over 100 other individuals living with invisible chronic illnesses - as well as a handful of caregivers for children or spouses living with chronic illnesses. These individuals represented more than 110 different diseases and conditions, including (but not at all limited to): ankylosing spondylitis (AS), Celiac disease, COPD, Ehlers Danlos syndrome, endometriosis, fibromyalgia, Hashimotos thyroiditis, HIV, juvenile idiopathic arthritis (JIA), lupus (SLE), lyme disease, myalgic encephalopathy (ME, formerly known as chronic fatigue syndrome or CFS), postural orthostatic tachycardia syndrome (POTS), psoriasis, psoriatic arthritis, Raynaud’s disease, rheumatoid arthritis (RA), scleroderma, Sjogren’s syndrome, Type 1 diabetes, Type 2 diabetes, and ulcerative colitis. The series also touched on many co-morbid conditions that are often present with chronic illness, such as anxiety, depression, or issues with sleep. 

Despite the fact that more than 100 different people answered the same set of questions, I think what surprised me most were the underlying themes of how we all we all work to keep facing forward, in spite of whatever our personal health issues may be. While most of us agree that it is important to give recognition to feelings of grief or depression, we also tend to make a real effort to focus on the positive aspects of life and practice gratitude, mindfulness, and thankfulness as much as we can. Our families, spouses, children, friends, pets, and loved ones also help us face each new day. 

Many of us also find support by connecting with others who are living with the same or similar illnesses - as well as personally benefiting from advocacy work and providing much-needed support to each other. It is absolutely no easy task to keep facing forward every single day while living with a chronic illness, but I think the overall lesson to be learned here is that we are stronger if we work together - lending a hand to those of us who are struggling more at any given time. 

To everyone who participated in this series over the last two and a half years, I want to offer my most heartfelt thanks for helping to share the importance of continuing to face forward!!

Facing Forward: Angela

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Angela

Location: Minneapolis, MN

Diagnoses: Rheumatoid Arthritis

Age at Diagnoses: 18

How are you currently treating your conditions?

Medications:

prednisone, methotrexate, plaquenil, Rituxan, hydrocodone (as needed for pain).

Diet:

For about a year I’ve been trying hard to stick to a vegan and gluten-free diet, but it’s really hard. I have seen real, significant effects after eating a strictly vegan diet for at least a week: much less swelling in my feet and ankles (even my bad ankle). They look almost “normal” again! What are those strange bumps on the sides? Ankle bones! Because I’ve seen positive results, it is my goal to stick with a vegan diet consistently for a good length of time. It’s just really hard to give up a lot of your favorite foods and comfort foods when you’re hurting and already feel like you’re sacrificing a lot due to RA.

Other diet changes I’ve made include: no soda, no processed foods, no “fake” foods or foods with chemical ingredients, no refined sugar or carbs. When I’m able to be strict about eating only whole, clean foods, I feel a lot better overall and my RA symptoms also improve.

Alternative treatments:

I’m currently doing physical therapy in a warm water pool and then plan to continue with pool therapy and exercises on my own once I’m finished with my sessions.

I also started seeing an integrative medicine doctor almost a year ago and she is continuing to help me try different alternative treatments along side my conventional or Western medications. She works on several different things with me: stress reduction, anxiety reduction, weight loss, breathing exercises, meditation, an exercise plan, and she recommends other forms of self-care, such as yoga. My ultimate goal is to use alternative treatments effectively and successfully so that I can get off some of the powerful RA drugs I’ve taken for years. Tapering off of prednisone is the first plan of action!

What are the biggest challenges you have faced since your diagnosis?

I was diagnosed at age 18, the summer after graduating from high school, so I began college life while trying to cope with the physical and emotional pain of RA. My RA has always been moderate to severe and I’ve never gone into remission, sadly.  My RA flared up a lot and pretty badly during my college years, probably due to stress and not finding a treatment that worked well. It took me a bit longer to graduate from college (6 years), but I did finally do it! RA definitely played a factor in not being able to graduate in the expected four years. I often missed classes and had trouble getting work done because of the severe pain and swelling in my hands and feet. I also had to retake some classes because of this.

What are your favorite tips and tricks for managing everyday tasks?

Making sure to get enough sleep is an important thing to do and makes a huge difference with my RA. Lack of sleep definitely makes my RA flare up, as well as exacerbating other health problems (anxiety, depression, fatigue, GI problems).

Giving yourself enough time to get things done or to go somewhere is also important and helps a lot with managing the disease. If I’m rushed, then I get really stressed out, which then often causes flare-ups.

For me personally, my ankles are my main “problem joints” at the moment. Having ice packs handy, as much as possible, help a lot with soothing my ankle pain and swelling. Having a couple of Ace bandages in my purse whenever I go somewhere is also helpful if I find I need to do a lot of standing or walking.

How do you manage to keep facing forward every day?

Good question! It’s not easy. And some days are much harder than others. I think I manage to keep facing forward every day, even if I’m in the middle of an excruciating flare-up, by somehow telling myself this mantra: Hang in there, things are going to be okay. They will be okay! In the moment, this may sound and feel like the most ridiculous and ludicrous thought to have, but I hold onto it because I do trust that things will always be okay, somehow.

Having this disease for a long time has shown me, over and over again, what a rollercoaster of a ride RA is. There have been times when I couldn’t even walk and my entire body felt like it was being continuously beaten with a baseball bat. It’s difficult to hold onto hope or hear your tiny voice trying to tell you that things will be okay and you’ll get through it. I force myself to listen to that voice, though, and do whatever is in my power to get better. I’ve been doing this for 20 years and so far it’s working! Holding onto hope and trying hard to not beat myself up about things I can’t do the way I want is what keeps me going forward.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

This isn’t a death sentence, Angela. You’re going to be okay. You can still live a happy and fulfilling life—never forget that! You’re stronger than this.

Do you have a blog you would like to share?

Blog: inflamed.wordpress.com (Inflamed: Living with Rheumatoid Arthritis)

Facebook: facebook.com/inflamedRA

Twitter: @aclundberg

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Juvenile Arthritis Camp Colorado

We had a ridiculously busy summer! And now here we are, already launching into fall. My oldest son has started kindergarten (?!?!), I've had the opportunity to start writing for a couple of great new publications, and I'm just about 19 weeks pregnant with baby #3 - all of which might help explain why I still haven't shared here about my experiences at JA Camp Colorado this summer!!

Volunteering my time and energy at JA Camp Colorado is honestly one of the most meaningful things I do all year long. I didn't grow up with JA myself, but I did get diagnosed with RA at a relatively young age - and so I like to think that I have life experience and understanding that would be relevant to these kids. One part of camp that I really like to contribute to is "Talk with the Doc," which are small group discussions that give campers the opportunity to really talk with doctors, nurses, adults living with arthritis (like me!), and each other about life with arthritis. In my group the kids wanted to discuss the search for a cure, the reality that many of us will need lifelong treatment, tips for making shots easier to deal with and getting over flares, whether stress makes arthritis worse and how to deal with it, trying different diets, and growing up to do different types of jobs with arthritis.

I love that JA Camp gives these kids an opportunity to meet and spend time with other children who are facing similar challenges. At at the same time, I love that camp offers the opportunity to just be kids and have fun with no judgment whatsoever. I don't think I'm really doing justice to how much of an impact the camp experience can have for kids living with JA, so instead I'd like to let some of the junior counselors share in their own words!! Not sure whether I'll be able to make it to camp next year with a tiny baby in tow, but I certainly want to do whatever I can to continue supporting these amazing kids - who are growing into pretty phenomenal young adults!

September is Rheumatic Disease Awareness Month!

This September marks the second annual Rheumatic Disease Awareness Month!! If we truly act as one voice, we can encourage more understanding and compassion for people living with rheumatic diseases – which will improve the lives of millions of Americans just like us!

Read more at RheumatoidArthritis.net!

Facing Forward: Stephanie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Stephanie

Location: Boynton Beach, FL

Diagnoses: Rheumatoid Arthritis

Age at Diagnoses: 25

How are you currently treating your conditions?

I am currently taking Enbrel injections once per week to manage the pain. I do my best to try and curb my diet (minimize gluten, dairy, sugar intake) but I have such a sweet tooth it is not always possible. The Enbrel controls about 95% of the pain thankfully.

What are the biggest challenges you have faced since your diagnosis?

Having to explain why I struggle to do simple every day things like turn on the faucet, open a jar, or squeeze a shampoo bottle. I went undiagnosed for 5 years and managed the pain with Tylenol sparsely and I adapted to doing things (like using my teeth to squeeze a bottle of shampoo). I was naturally adapting to not being able to do things and never thought about it until someone would see me doing it and comment on it, then I would have to explain the pain I am in and the difficultly the swelling makes it to do everyday tasks.

It is also a challenge to talk about this with close friends because I always feel like no one truly understands and it is so hard to explain. People associate "arthritis" with old age and not understanding rheumatoid arthritis is a chronic illness and can affect any age. I struggled in silence for years only using my husband's shoulder to cry on and as a sounding board because I did not want the "poor you" comments or looks from friends and family who really didn't know what else to say. I don't blame them though, it took me a long time to come to terms with this and I am still comprehending my lifelong diagnosis and how it affects me now as a new mom and how I will have to deal and manage the pain for the rest of my life. 

As a new mom, I am challenged with making decisions based on my ability to do certain things, for example: when it came to breastfeeding I was fortunate enough to be able to exclusively breastfeed my daughter but when she was about 7 weeks old I had to make the decision to go back on my medication and continue or stop breastfeeding but not for the reasons other moms stop (low supply, pain, time consuming, no desire to breastfeed, etc). I had all the struggles of other breastfeeding moms plus a need to take medication in order to walk (my knees had swollen to almost double in size). Thankfully I was able to take a medication compatible with breastfeeding and continue on in that journey. I just had immense mom guilt of depriving my daughter of breastmilk because of my own health issues. It's a challenge to think of your condition ON TOP of all the things new moms worry and think about.

What are your favorite tips and tricks for managing everyday tasks?

I take my time and know my limits. My body will tell me when I am not going to be able to open the jar or squeeze a bottle or pull the car seat out without the shooting pain. I have to take a moment and take a deep breath and try it again, try a different way... or ask for help. I have gotten better at asking for help. I don't have a lot of tips and tricks other than just listening to my body and not beating myself up when I can't do things someone my age shouldn't have to think twice about doing.

How do you manage to keep facing forward every day?

I try not to let it hinder my goals, I work hard to do everything I should be able to do, I am pretty silent about my condition and because it is an invisible illness, people forget to ask about it. Which I'm ok with, because if I had to talk about it all the time, I think it would be hard to stay positive and face forward. The thing I always try to do is turn the well-meaning, but often negative comments ("wow I can't believe you have to deal with that", "that's awful", "I feel so bad for you" and I've even heard "that sucks") into a positive, I can still do everything others can, it might just take me a little longer or I might need a little more help but I can do it. I don't want to be looked at or treated different which is probably why I am so private about my illness.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

Wow. My diagnosis day was so emotional. I couldn't stop crying. I thought my life was being cut short and there was so much I hadn't seen or done (I was unmarried, no kids, didn't own my home, etc). It may sound dramatic but my life flashed before my eyes. If I could go back to that day, back 4 years, I would tell myself "You can do this! You will persevere and figure this out. You'll be able to see and do everything you're supposed to, everything others your age do and you'll be able to do it without the average person even knowing you have this condition." When I was first diagnosed, I craved a community of others, similar to me, who were also diagnosed with this condition at a young age and I had such a hard time finding that. I would also tell myself that it's out there and I would find it one day and that talking about it helps.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Pregnancy & Parenting With Arthritis – An Interview with Laurie Proulx

I was very excited to have the opportunity to interview the amazing Laurie Prolux about her own experiences with arthritis and pregnancy/parenthood - as well as the amazing resource she has helped to develop for other parents! 

Read more at RheumatoidArthritis.net!

Facing Forward: Jeffrey

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Jeffrey

Location: Los Angeles

Diagnoses: Stage IV Non-Small Cell Lung Cancer, Adenocarcinoma

Age at Diagnoses: 46

How are you currently treating your conditions?

I had been on chemotherapy (Alimta) for over 2.5 years -- through 40 cycles -- and just stopped to take a break before switching to another treatment. I will either qualify for a new clinical trial on an immunotherapy combination regimen or I will try a targeted therapy for a specific DNA mutation, pending the results of a liquid biopsy that will take place this coming week. I also have tried staying generally active, eating a healthy and balanced diet that is high in protein, and working a lot on things that bring me joy.

What are the biggest challenges you have faced since your diagnosis?

The hardest thing has been fending off fatigue, both physical and mental. But I have found that the more active and engaged I can be, the better the results.

What are your favorite tips and tricks for managing everyday tasks?

Focusing on finding the beauty in everything around me. And when it comes right down to it, simple acceptance of what I need to do and that it has to get done.

How do you manage to keep facing forward every day?

Some days this can be a bit tricky, but I think about what I love in life and what is important to me beyond just how I feel. The more I engage with the world, the easier it is to envision myself a worthwhile part of it. I try to live in the moment, with an eye to the future -- goals remain important and there is a lot that I still want to get done.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

Exercise matters -- stay off the couch as much as you can.

Do you have a blog you would like to share?

My blog is at www.justbadforyou.com/blog (I have chronicled my experience with cancer there since Nov. 2014, and occasionally write about other things, too)

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Facing Forward: Alice

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Alice

Location: Ireland

Diagnoses: Osteoarthritis; Degenerative Disc Disease; and Degenerative Joint Disease of the spine.

Age at Diagnoses: 47

How are you currently treating your conditions?

I am currently treating my condition with a combination of lifestyle changes including walking 3 miles 3 times per week and attending aqua aerobics once per week. I also use a lot of meds, including painkillers, muscle relaxers, nerve dampers and anti-inflammatories. I attend physiotherapy once per week and practice daily range of  motion exercises. I use daily supplements also: turmeric, fish oil, glucosamine, and vitamin D supplements. I attend weekly pain psychology appointments and monthly pain management and orthopedic appointments. I have had a lot of steroid injections, facet joint injections, and nerve root blocks both lumbar and cervical spine. I have had lumbar surgery where I had a discectomy and decompression of L5/S1 and spur removal and am now preparing for fusion of cervical spine.

What are the biggest challenges you have faced since your diagnosis?

I think the biggest challenge I have faced since diagnosis has been trying to find acceptance of my condition. I have seriously struggled with this. I was a very active person juggling family, work, social life, and looking forward to enjoying an early retirement with my husband. This diagnosis and the constant demands that it puts on me have changed me from the person I was. I have had to quit working, driving, and socializing. I have become very dependent on my family now. I miss my old self.

What are your favorite tips and tricks for managing everyday tasks?

My tips are to accept that you can no longer do certain tasks and to ask for help with the things you struggle with.

How do you manage to keep facing forward every day?

I began to focus on the things that I can do and not so much on the things that I can't. I rediscovered my love of sewing and recently started an Angel Gown Program in my local town. This has given me a renewed sense of purpose and a feeling that I can still make a difference. I try to keep it in the day and not attempt to look too far forward.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

To stop smoking earlier and to take care of my back.

Do you have a blog you would like to share?

I don’t have a blog, but here is my Angel Gown Program. 

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Facing Forward: Cheryl

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Cheryl

Location: Kirkland, WA

Diagnoses: Rheumatoid Arthritis and Gastroparesis

Age at Diagnoses: 20

How are you currently treating your conditions?

For rheumatoid arthritis, I take a biologic medication along with a DMARD (disease-modifying antirheumatic agent), which is supposed to help improve the effectiveness of the biologic. I also focus on protecting my joints during my daily activities by modifying my approach to them, as well as wearing splints as needed. For gastroparesis, I see a GI doctor along with a naturopath and acupuncturist to help my motility; at times I’ve been able to control it with simple dietary changes, but at other times I’ve needed medication. To manage both these chronic illnesses, I’ve found it crucial to see a therapist as well, to cope with the stressors that go along with these diseases.

What are the biggest challenges you have faced since your diagnosis?

The biggest challenge for me has been the fact that these diseases don’t have a clear trajectory; I like to be able to plan my life in advance, which is impossible health-wise since I don’t know when either of my diseases is going to flare up. The second biggest challenge has been balancing my role as a mom with my disease management, particularly when it comes to sleep and rest. As my son has gotten older, this aspect has gotten a bit easier, however!

What are your favorite tips and tricks for managing everyday tasks?

I focus on either changing up the items I use, changing my approach to the task, or finding workarounds. For example, instead of opening jars by hand, I use an electronic jar opener. If I don’t have the opener available, however, I can change my approach to the task so that I minimize strain on my joints - I do this by using my bigger muscles and “whole arm movements” rather than using just the small joints in my hands (which are more affected by my RA). Workarounds are crucial for me, as they allow me to avoid tasks altogether; these include asking for help, grocery delivery, and a housekeeping service. Overall, I find that building in time for self-care and taking rest breaks is also important, regardless of which other approaches I’m using.

How do you manage to keep facing forward every day?

I recently took a mindfulness course, which I found very helpful because it taught me how to focus on the present moment rather than getting consumed about future worries and anxieties. It also helped me cultivate a sense of gratitude for what I have, regardless of the limitations imposed by my diseases. I started a gratitude journal. I also find that my weekly sessions with my therapist are essential for helping me face forward, along with quality time with my family.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

When I got diagnosed with rheumatoid arthritis, I was actually relieved as I had previous felt that something was definitely “wrong” in my body, yet was told by many healthcare providers that I was “just anxious.” That said, I would tell myself to not take for granted the times that I feel good. I didn’t understand that the disease would likely have lots of ups and downs over time; I thought that I would simply take medication for the rest of my life and feel better. I was overly optimistic when I got diagnosed, and so if I could go back in time, I’d urge myself to be a little more cautious in my optimism.

Do you have a blog you would like to share?

My blog is The Enthusiastic Life, where I share tips for daily living with rheumatoid arthritis, as well as tips for pediatric occupational therapy (my job field) and a few other fun topics.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Pregnancy and Chronic Illness: What I Learned

I recently had the opportunity to write an article for Women magazine about my experiences with pregnancy and chronic illness (though I wrote it before we found out about pregnancy #3!) Though the article definitely looks prettier in the printed magazine, you can read it online here:

Pregnancy and Chronic Illness: What I Learned

For those of you who have read a lot of my writing on this subject, you won't find anything particularly new or groundbreaking in this article. I do think it's a great summary of all the important things to keep in mind when considering a pregnancy with a chronic illness - but I have already written about most of the topics in other places. What I think is particularly exciting about this article is to see the topic getting more attention as an issue of general women's health - that affects more women than most people think!

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!