Tuesday, May 19, 2015

Facing Foward: Jessica & Waylon (A Caretaker's Perspective)

Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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: Jessica
Child's Name: Waylon, 10 years old
Location: Perryville, MO (rheumatologist and hospitalizations were at Cardinal Glennon Children's Hospital in St. Louis)
Child's Diagnosis: SJIA or Systemic Onset Juvenile Idiopathic Arthritis
Age at Diagnosis: 2 years old

How are you currently treating your child's condition?
Currently, he is only on one medication: Actemra. Actemra is an infusion that he receives every eight weeks.

What are the biggest challenges you have faced since your child's diagnosis?
Treating him the same as our other son. His doctor told us early on not to give him special treatment because of his arthritis. We also struggled with his question, "Why do I have to be the only one (in this family/in my class) who has to do this?" Waylon would ask us this through tears when he was having to take methotrexate. We did our best to explain that is just the way God made him, but how do you explain/justify this to a child when you can't understand it yourself? You just have to accept how things are when you have done everything you possibly can to fix it. 

What are your favorite tips and tricks for helping your child manage everyday tasks?
We pray a lot! From the time Waylon was first diagnosed, he would pry every night that God would take his arthritis away! We are really blessed that Waylon doesn't have difficulty managing everyday tasks. He has been active in sports over the years, participating in tae kwon do, soccer, and most recently basketball and track. You would never guess he has arthritis.

As a caregiver, how do you manage to keep facing forward every day?
We know that he is not hurting. His lab numbers are good. We can see that his Actemra is working. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
That is a tough one! I asked for some help on this. Waylong said, "It will all get a lot better." My husband (Brad) and I agreed on, "Trust God to take care of this." It took me over a year to realize that I couldn't make this better myself and to turn it all over to God to handle. 

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

Is RA Hereditary?

Is RA hereditary? A genetic component that influences susceptibility is not the same as a disease being hereditary.

Monday, May 18, 2015

The Changing Face of Arthritis

October 2012; OZL 4 months old

April 2013; OZL 11 months old

 March 2014; OZL 22 months; 22 weeks pregnant

 July 2014; OZL 2 years old; 38 weeks pregnant

 September 2014; OZL 2 years old; CZL 8 weeks old

 May 2015; OZL 3 years old; CZL 10 months old

Sunday, May 10, 2015

Arthritis Awareness Month

In honor of Arthritis Awareness Month, I want to share with you a15 second glimpse into my life with rheumatoid arthritis. 


Friday, May 8, 2015

The Benefits of Advocacy

This experience has really demonstrated the benefits of advocacy to me. Not only did I help pass a law that will help all patients in the state of Colorado, I also helped myself keep moving forward with a feeling of optimistic purpose.

Tuesday, April 28, 2015

Healthline's Best Rheumatoid Arthritis Blogs of the 2015

For the fourth year in a row, this blog has been selected as one of Healthline's Best Rheumatoid Arthritis Blogs of the Year. Here's what they had to say about me this year!
When Mariah Leach was diagnosed with RA while in law school, she started writing her blog, From This Point. Forward., as an outlet for her pain and frustration. Seven years later, she’s still blogging. Readers can track her progression from a student grappling with a new and unfamiliar disease to a mom and vocal RA advocate. Though Leach still has to deal with the everyday difficulties of her disease, she’s come a long way.
Thanks so much for the recognition! 

HealtheVoices Conference*

The weekend before last, I had the opportunity to travel to Jersey City, New Jersey to attend the HealtheVoices Conference.*

The unique thing about this conference was that it brought together about 60 health bloggers across a variety of diseases and conditions. In addition to getting to reconnect with many of the amazing RA bloggers that I met in Boston at the Joint Decisions Empowerment Summit, I also had the opportunity to meet people living with HIV/AIDS, Crohn's disease, IBD, metastatic breast cancer, diabetes, and more. 

After a welcome dinner on Friday, we launched into a completely jam-packed Saturday program. Seeing as I haven't been feeling fantastic lately, I have to admit that it was a really, really long day. I was completely exhausted and achy by the end of it. Honestly I probably would have been achy and exhausted even if I had been feeling better! But the speakers and presentations were so great I didn't want to miss any of it. I really learned a lot from the presenters about how to use my blog and social media to support and advocate for all of my readers!

Aside from the amazing presentations, the people at the conference were also a highlight. It was really amazing to get to see and spend time with the RA bloggers that I have been getting to know, both in person and online, over the past several months. We sat together through most of the presentations and laughed at how we all ended up fidgety, popping pain pills, and covered in ice/heat packs by the end of the afternoon. I am so happy to have connected with this stone cold pack of weirdos.   ~;o)

I also really enjoyed meeting people across a variety of other health conditions. It was truly amazing how much we had in common, despite our different diagnoses. On Saturday I had breakfast the mom of a toddler who had breast cancer. We talked about the added stress having a health condition places on being a mom and the sadness of weaning because your health requires it. At lunch I had a wonderful discussion with some ladies across a variety of diseases about the impact of chronic illness on our sex lives (and how to talk about it on the internet, which I have somehow gotten very good at doing haha). And before leaving on Sunday, I had a discussion with a woman with Type 1 diabetes about the issue of disease naming (some folks think rheumatoid arthritis should get a new name, so as not to be confused with osteoarthritis. It turns out some people with Type 1 diabetes feel the same about the confusion between Type 1 and Type 2. An interesting discussion!)

It was partly the discussions and connections made at this conference that gave me the idea to start Mamas Facing Forward, because I think there really is a lot that we can learn from each other - even if we have different diagnoses. In fact, my only complaint about the conference is that there wasn't enough time to really talk to all of the wonderful people who were there! I hope that we will be able to stay connected and continue learning from each other in the future. And I hope there's a HealtheVoices2 next year!

*Janssen paid for my travel expenses. All thoughts and opinions expressed here are my own.

Monday, April 27, 2015

Facing Forward

If the Rituxan works, I won’t have to have another infusion for at least six months. However, I can’t really bear to think about what I will do if it doesn’t work.

Friday, April 24, 2015

Mamas Facing Forward!

I honestly don't know how I think I have the time or energy for this, but I have a new project to announce!! 

NOTE: Am total crazy person. I'm aware. But it's been a long while since I have felt so excited about something (other than my obviously adorable children) so I am going for it!

Mamas Facing Forward is my new private FB support group designed to help mamas and mamas-to-be facing chronic illnesses move forward with motherhood! Whether you already have little ones, are pregnant, are looking to adopt, or are just considering motherhood - if you have a chronic illness this group is for you! Part of a larger project, this group will serve as a preliminary forum to ask questions, share resources and ideas, and connect with each other. I also hope to gain feedback as I develop content for a new website.

Tuesday, April 14, 2015

Rituxan, Round 2

Two weeks ago, I had my first infusion of Rituxan. It took more than six hours. I had some nausea and general flu-like malaise for a few days afterwards, but luckily I didn't have any major side effects.

Those of you who follow me on Facebook or Twitter will know that I had my second Rituxan infusion yesterday. Since I didn't have any major reactions the first time, they were able to do this infusion a little bit more quickly. This time it only took four hours. But afterwards I still felt like a total zombie. Thank goodness my mom came over to help me with the kids until APL got home!

And now? We wait. It will be another couple of weeks until we can know whether the Rituxan will work. My goal is to have my other treatments work well enough to get off the prednisone completely, so I'm keeping my fingers crossed. If it does, I won't need another infusion for at least six months. If it doesn't....well, I guess we'll cross that bridge when we get there.