Wednesday, November 28, 2018

Yahoo! Lifestyle: The struggles of being a mom with painful arthritis

I recently had the opportunity to chat with Yahoo! Lifestyle about the challenges of being a mom with a chronic illness. The article also gave me a chance to share more about why I started Mamas Facing Forward and how I hope to continue helping moms in the future! Click below to read the full article:

Yahoo! Lifestyle


Thursday, November 15, 2018

RA Research Study That Pays $190

This post is sponsored by Video Chat Network

Since I was originally diagnosed with rheumatoid arthritis (RA) ten years ago, I've noticed that companies have become a lot more interested in giving patients the opportunity to provide real feedback on the patient experience. This is important not only to shape products and experiences for future patients, but also because some of these opportunities compensate patients for their time and expertise - and we all know that life with RA comes with a financial burden as well! So I wanted to share an opportunity that gives patients living with RA the opportunity to earn $190 for sharing their perspectives.

Video Chat Network is an independent research firm engaged in a project to learn about the current challenges, experiences, and best practices for living your life with RA. They are looking to interview patients who have been diagnosed with RA for more than three months and who are currently on a regimen that includes DMARDs (such as Celebrex, Trexall/methotrexate, or Plaquenil) or advanced therapy biologics (such as Humira, Simponi, or Orencia) in either pill, injection, or infusion form. 

Participants will be asked about their thoughts and experiences during the process of finding a treatment plan that works best for them. This input will affect how information about new and upcoming treatment options are presented to future patients.

If you are over 18 and interested in participating in a one-hour video chat interview, you will be compensated $190 for your time and opinions.

If you can refer other RA patients, you will be compensated $50 for every interview performed that your referral provides.

As a patient myself, I was sure to ask the study organizers about their privacy policies before deciding to share this opportunity with my readers. They assured me that the video interviews would be recorded for internal reference and study analysis only, and that participants names will not be revealed. The learning from all respondents will be pooled together and analyzed and no personal identifying information will be revealed to the client. 

To find out if you qualify, please click here and fill out the online questionnaire.

Monday, November 5, 2018

October Articles for Rheumatology Network - ACR 2018

My assignments for Rheumatology Network include reporting on recent scientific studies about rheumatoid arthritis and other related diseases. For the month of October my articles focus on coverage of the American College of Rheumatology Annual Meeting that took place in Chicago, Illinois.

Although these articles are intended primarily for a physician audience, I know patients are also interested in scientific advances. If you ever have additional questions, please don't hesitate to let me know!

New recommendations cover pre-conception assessment, pregnancy-compatible medications, breastfeeding, and contraception for rheumatology patients.

New guidelines have been drafted for the treatment of JIA, specifically addressing therapeutic approaches for non-systemic polyarthritis, sacroiilitis, and enthesitis. 

The pros and cons of HCQ dosing guidelines to limit potential eye toxicity were explored at this year's ACR/ARHP Annual Meeting.

Findings from the first study to incorporate a meta-analysis on TNFi dose adjustment in an axSpA population.

Seropositivity was strongly associated with ILD risk in this large prospective cohort study. 

British researchers quantified the burden of continuing weight gain on the risk of PsA. 

Be alert for the development of uveitis in older patients with gout, especially those who have multiple comorbidities.

Monday, October 1, 2018

September 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!

Moderate physical activity improved function and quality of life but failed to have the expected impact on pain. 

Wednesday, September 26, 2018

Appointments Without Answers

It's frustrating for anyone to visit doctor after doctor and not get any answers. But, for people living with chronic illnesses, I think it can be particularly soul crushing.

People with chronic illnesses tend to have this experience happen to them over and over...and over and over again. We are so so so tired of it all. Tired of doctors. Tired of labs. Tired of tests. We're tired when we do get answers - and exhausted to numbness when we don't. But what other options do we have than to keep going back anyways? 

I am so pleased that medications now exist to control my RA that are breastfeeding friendly. Because of these advances in research, I am still breastfeeding my little girl a full five months after I had to wean both of her brothers. I know that it absolutely doesn't matter how a baby is fed - no one cares that my first grader was given mostly formula. And I know from experience that there is so very much more to motherhood than how your baby eats those first few months. 

But breastfeeding has always been important to me. It was part of how I always envisioned myself as a mother. So I am beyond thrilled that my little girl turns eight months old today and we are still going strong - and my RA is still miraculously under control with Cimzia and a little bit of prednisone. I know exactly how lucky I am to be able to have this experience at all, and I really want it to last as long as possible.

However, there have been some hiccups with the breastfeeding itself. The Monday before last, I had another clogged milk duct - my fourth in less than two months in exactly the same spot. And each time that duct gets plugged, it seems to hurt even more than the last time. While I am obviously no stranger to pain, it hurt so much that Monday night that I literally fell asleep in tears. I think it scared my husband.

I know when to seek medical attention for myself, so I called my doctor first thing the next morning. They offered me an appointment on Friday. That seemed a bit too far away to me, so I asked to talk to a nurse. After playing phone tag all day long, they eventually ordered me a second round of antibiotics without me coming in and said they'd see me on Friday unless I got a fever before then.

After nearly a week of antibiotics, of course my breast looked totally fine by the time I went in for my appointment last Friday. I tried explaining that I wasn't in pain now, but that I'm concerned about it happening so often in the exact same location. Wasn't there anything we could do to stop that from happening again? Especially because every time they give me antibiotics I end up having to delay my Cimzia shot - and I know that if my RA starts getting out of control because of delayed meds, breastfeeding will be over. And I'm simply not ready to go there. 

The doctor kept repeating "that must be frustrating" and "I hear you." He repeated these phrases so many times in a row that instead of truly feeling understood, I got the impression that he was trying to placate a fragile hypochondriac and move on to his next patient. It was enough to make me feel like I was a fragile hypochondriac. I tried asking again if there was anything I could do to prevent this issue from happening in the future. He finally ordered an ultrasound.

I went in for the ultrasound this morning. Having finished my second course of antibiotics yesterday, of course everything in my breast looked totally normal. I tried explaining to that doctor that I wasn't in pain now, but that I was very concerned about the problem happening so often in the same location - is there anything you can tell me that might help?

He launched into some general information about breast tissue, during which he uttered the words "and because you're not nursing," and I had to remind him that I am, in fact, nursing. That's the whole issue here. When I realized I would get nothing useful from this appointment either, I couldn't stop tears from falling as I tried to politely thank him and get out of there while he patted me on the shoulder and said he understood. 

So after multiple phone calls, two appointments, and an ultrasound, I still don't know if there's anything else I can do to prevent this issue from occurring again. And maybe there simply isn't. Maybe it's just luck. But, even so, I still feel like there must be some way for me to leave those appointments feeling like I had my doctor's support and true understanding - rather than feeling like it was an infuriating waste of my time and energy.

Because when patients feel like doctors aren't helping them - especially patients who deal with doctors all the time - we're less likely to call the next time we have a problem. And that is a real problem.

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?