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!
Tuesday, May 22, 2018
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?
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