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.