Thursday, July 12, 2018

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

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

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

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

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

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

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


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

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


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




Friday, July 6, 2018

6 Things Mothers With RA Want You To Know

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


What do you think? Did we miss anything?

Thursday, July 5, 2018

Rheumatology Nurse Practice: Family Planning & Pregnancy Issues in RA

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

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

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

Sunday, July 1, 2018

A Decade of Living With RA

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

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










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

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

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

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

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


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

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

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

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

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

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

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

Thursday, June 28, 2018

Arthritis Today: How has a loved one supported you?

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

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

Thursday, June 21, 2018

June Articles on Rheumatology Network

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

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

Tuesday, May 22, 2018

5 Things Patients With RA Want Their Doctors to Know

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

Saturday, May 19, 2018

Healthline's Best Rheumatoid Arthritis Blogs of 2018

I am very honored to have been selected as one of Healthline's Best Rheumatoid Arthritis Blogs for 2018, alongside some of the bloggers that I most love and respect. I'm especially excited that I can now claim this honor for seven years in a row!! 

You can check out the other amazing honorees here:


(It's also fun for me to see RheumatoidArthritis.net make the list - as I've been a contributor there since the site launched. So I feel twice honored!) 

Monday, May 7, 2018

UnbuckleMe! Product Review and Giveaway!

I was given this product as a gift to review, but all opinions remain my own and I was in no way influenced by the company. As stated in my product review policy, my reviews will always be honest. 

It's been three years since I launched Mamas Facing Forward, my private Facebook support group for moms living with chronic illnesses. In that time, one of the most frequently discussed topics has been car seats. More specifically, I often see mamas discussing how on earth we are supposed to be able to unbuckle car seats - especially those of us who are living with rheumatoid arthritis (RA) or have other issues with our hands! 

When it comes to parenting, there are some types of gear that are difficult to use and so you can skip using that item all together - but car seats aren't exactly optional! So I was pretty excited when UnbuckleMe contacted me right before my third baby was born to ask if I wanted to review their product. From discussion in Mamas Facing Forward I had heard of similar products, but I had never tried one myself. I figured it would be a great item to have on hand in case I experienced a post birth flare!

I have to say that I wasn't disappointed. Designed by an occupational therapist, the UnbuckleMe is extremely simple to use. You just slide it around that big red button - you know, the one that's so difficult to push when you're having trouble with your hands - then you exert just a tiny amount of pressure and the button pops open. Super simple. There's also a little loop so you can hook it to your key chain or diaper bag so it doesn't get lost.

Luckily for me my hands have been doing pretty well lately (knock on wood!) So since I don't need the UnbuckleMe regularly myself, I decided to see if my oldest kiddo would be able to use it. He has been able to buckle his car seat all by himself for a while now, but he simply wasn't able to exert enough pressure with his thumbs to unbuckle himself, and since I've got three car seats now it isn't that easy for me to reach to unbuckle him. He's thrilled that the UnbuckleMe makes it possible to unbuckle his own car seat - it makes him feel like a big kid - and I'm equally thrilled to have some help getting three kids in and out of car seats every time we go someplace! He can now unbuckle himself and sometimes even his brother when I ask him to, which is particularly useful if we're running late or the weather is yucky. Here's a quick video of my oldest kiddo demonstrating how easy the UnbuckleMe is to use!

(Please note: if you plan to let your kiddo use this you do need to have a system in place so they don't unbuckle themselves while you're driving down the road, either by setting rules with a responsible child or by only handing them the tool once the car is parked.)


I'm also thrilled to be able to give away an UnbuckleMe to one lucky follower! Here's how to enter the giveaway - I'll randomly select a winner on Friday, May 11th!

 
If you don't win the giveaway but you'd still like to give this product a try, UnbuckleMe is offering a 20% discount this week in honor of Mother's Day! Just visit their website and use code: mama20

Wednesday, April 25, 2018

Mamas Facing Forward Project Update!!

Tomorrow I'm headed to Chicago for HealtheVoices 18, where I'll be presenting an update on the progress of the Mamas Facing Forward website! I know it doesn't look like much has been happening on that site, but trust me there's a lot occurring behind the scenes - so I wanted to provide a little update! 

For starters, I wanted to let you know about the HealtheVoices Virtual Experience - where you'll be able to tune in to my presentation on Sunday morning as well as the other sessions at the conference!


As for my "behind the scenes" progress, I worked with a graphic designer to develop a logo for Mamas Facing Forward. We discussed the mission and goals of the site and settled on a logo that includes the image of held hands. This is meant to represent both the relationship between mama and child as well as the connected nature of the community of mothers with chronic illnesses supporting one another.




I've also been researching and gathering as many of the existing resources as I can find on topics related to motherhood and chronic illness. Through my own research and with feedback from real moms in the Mamas Facing Forward Facebook Group, I've developed an outline for the main menu for the site. Each main topic (seen below in bold) will have a drop-down menu with the sub-topics. Every article and resource published on the site will be tagged to fit into one or more of these topics. I'm also hoping to include a tagging system for resources related to specific illnesses, so I can direct viewers to relevant resources.

  • ABOUT
    • About Mamas Facing Forward
    • Privacy Policy
    • Terms and Conditions
    • HealtheVoices Impact Fund info
  • FAMILY PLANNING 
    • Genetics & inheritability
    • Medication considerations
    • TTC (trying to conceive) & intimacy issues
    • Alternative parenthood paths (IVF, adoption, surrogacy, etc)
  • PREGNANCY
    • Treatment during pregnancy
    • Preparing for baby
    • Childbirth
    • Postpartum
  • KIDS
    • Baby
    • Toddler
    • Big kids
    • Teens
    • Special needs
  • LIVING
    • Self-care
    • Explaining diagnosis to kids
    • Relationships
    • Food & home
    • Money & work
    • Single motherhood
    • Travel
    • Seasonal
Recently, I've taken a brief hiatus from working directly on the website to conduct some first-hand research into the challenges faced by moms living with chronic illnesses - by which I mean my own newest arrival is still only three months old! She's finally started to let me sit at my computer again, so I expect progress from this point forward (HA!) to be more rapid! I hope to have the first version of the Mamas Facing Forward site launched soon!


In the meantime, if you know of any great resources focusing on motherhood and chronic illness, please send them my way so I can make sure the links are included in my resource list! (Mariah@mamasfacingforward.com) I'm also still searching for a reasonably-priced web designer to help me with some of the technical details of building the site, so I'd appreciate recommendations if you have them! And please feel free to contact me if you might be interested in writing a guest post for the site in the future - I have a small budget for this purpose! 

If you'll be at HealtheVoices please come find me and say hello! I'd love to meet you in person!!

Friday, April 6, 2018

Everyday Health: The 10 Best Arthritis Blogs to Keep You (and Your Body) Moving

I'm very excited to share that this blog has been selected by Everyday Health as one of their ten best arthritis blogs! I'm honored to be selected alongside some of my very favorite arthritis advocates. 

You can check out the full list here:



Thursday, April 5, 2018

Postpartum

I tried to post this yesterday. But I just couldn't figure out how I felt, so I couldn't really think of what to say. Honestly I'm still not sure.

Yesterday the baby and I went to see my rheumatologist. While I'm definitely doing better than I was at this point postpartum with either of the boys, there's simply no denying the all too familiar twinge in my toes, the ache in my knees, the whole-body morning stiffness, the nightly anxiety dreams that always seem to accompany the onset of a really bad flare...

Cimzia is a wonderful pregnancy- and breastfeeding-friendly treatment option, and I'm so grateful for how much easier things have been this time around on it. But the reality is that it just isn't enough to control my RA indefinitely by itself. I've know that was the case from the start. But Rituxan, which is by far the best treatment I've ever been on, isn't breastfeeding-friendly. So my option if I want to keep breastfeeding is daily prednisone until I wean and switch to something stronger. And we all know how I feel about regular prednisone. And, in any event, there's no guarantee that the prednisone will even be enough to keep things under control.

For some reason, I can't really seem to figure out how I feel about the whole situation. On the one hand, I'm really doing a lot better than the last two postpartum periods, so I can probably afford to push it a bit more. On the other hand, with three kids to care for now, it's even more important for me to be functioning as well as possible. 

Perhaps most importantly, I can't seem to figure out what I actually want. On the one hand, breastfeeding is so much easier and I really love the bond it gives me with my baby girl. And even if things get worse than they are now for me physically, it luckily doesn't look like we're on track for it to be nearly as bad as my last two postpartum experiences. On the other hand, not breastfeeding would be so much easier, and I know full well that I can have an equally strong bond with my daughter without it. And, since I've done so well physically in the past year or two, even a small flare feels unnecessary since I know there's a treatment out there that could potentially make it stop. Each option feels easier than the other. Each option feels harder than the other. 

All these unknowns have been causing me some serious anxiety. It feels almost like having PTSD - based on pain and struggle I've experienced in the past I'm worrying about pain and struggle that hasn't even happened yet and might never even happen at all. And logically I know that doesn't remotely make sense. Logically I know I'm doing a lot better this time, I have more options than I've had in the past, not breastfeeding is perfectly fine, and mostly everything is going ok. But somehow my subconscious is having a difficult time remembering that, especially in the middle of the night. 

So for now I'll take the prednisone. I'll take the anxiety meds. I'll talk to the therapist. I'll take it one day at a time and see how it goes. I'll try to give myself space to figure out what I want. I'll try to give myself time to figure out the best decision for me. And I'll try not to beat myself up about any of it.

After all, my little girl is here. She's two months old and healthy and her brothers adore her. My family is whole. And that's most import of all.

Tuesday, March 6, 2018

Introducing mZL!

I've been rather remiss in updating this blog as I've been just a tiny bit busy these past few weeks! Baby mZL (lowercase m since her initials are the same as mine!) was born via scheduled C-section on January 26 at 8:21am. She was 7 lb 5 oz and 20 inches long. 

Those of you who follow me on Instagram already know we've had a rough start this first month. After about a week at home I was re-hospitalized for postpartum preeclampsia, which I didn't even know was a thing until it happened to me. I don't think living with a chronic illness made me any more susceptible to this particular pregnancy complication, but I do think it made me a lot more likely to ignore unpleasant symptoms because I'm so used to feeling crummy. I spent several days soldiering on with a crazy headache before APL insisted that I check my blood pressure and call my OB. And it turns out it was a good thing he did.

My OB asked me to come in immediately. I expected them to check my blood pressure and send me away with a prescription for blood pressure medication - instead I was admitted immediately to labor and delivery to start a 24 hour magnesium sulfate IV. It was not a pleasant experience, but luckily I was able to keep mZL in the hospital with me so we could keep breastfeeding, though my mom or husband had to stay in the room with us while I was on the magnesium. I spent three extra days in the hospital before going home for the second time. The experience was a reminder of how important it is for me to prioritize my own self care as a mom - because if I don't take care of myself I won't be able to take care of anyone else, no matter how much they may need me. 

Then, just last week, mZL and I had to spend a night at the Children's Hospital. She was napping one afternoon when I looked over and noticed that she was extremely still and her face and hands looked a bit blue. I picked her up and she was very sluggish, and it took a few minutes to get her pink and angry again. Our pedi sent us to have her heart and lungs checked - and let me tell you: getting a 4 week old to "lay still" while covered in wires for an EKG is no picnic! Luckily they ruled out any major issues and she is doing just fine now, but it was definitely very scary. 

It has certainly been a very eventful first month, and I'm very much looking forward to things calming down and settling back into a routine going forward. In the meantime, here are a couple more pictures!



Monday, February 26, 2018

New Study Finds No Link Between Rainfall and Joint Pain – What Do You Think?

There are many people who live with RA, who I know and trust, who have made a connection between symptoms, like pain, and the weather - but this study seems to debunk this commonly held belief. What do you think?

Friday, February 23, 2018

Monkey See, Monkey Do, Monkey Cure RA?

A recent study from the Keck School of Medicine at the University of Southern California has determined that old world monkeys could be key to a new, powerful RA therapy.

Wednesday, February 21, 2018

Fitness for Fatigue

We’ve all heard it over and over (and over and over) again: it’s so important for people living with RA to exercise. Physical fitness can be extremely useful in managing many of the symptoms that come with RA, including fatigue. But does anyone else think this advice is easier to hear than actually follow?

Monday, February 19, 2018

January Rheumatology Network Articles

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!

No differences observed in patellofemoral joints of asymptomatic patients and those with pain.

New Criteria for Idiopathic Inflammatory Myopathies
Recently published EULAR/ACR classification criteria generally perform better than previous criteria.

Treatment Targets Show Promise in Psoriatic Arthritis and RA
A look at the role of the C5a-C5aR axis in the onset of inflammation.

Tuesday, January 23, 2018

Cannabis as a Treatment Option

As local governments move towards legalization of marijuana, many patients with RA and other chronic illnesses are curious about cannabis as a potential treatment option. For this reason, I was very interested to attend a talk at the 2017 American College of Rheumatology Annual Meeting called “Cannabis in Society and Medical Practice.”

Tuesday, January 9, 2018

For Previous Cancer Patients, Biologics Don’t Increase Risk

For those with RA, new research has demonstrated that treatment with biologic medications does not increase the risk of a second cancer malignancy.

Thursday, January 4, 2018

Biosimilars: To Switch or Not to Switch? That Is The Question!

If you’re interested in new and emerging treatments for RA, you’ve probably at least heard the term “biosimilars.” But what exactly are biosimilars? And what should you do if your doctor recommends one?