Through her blog, she helps others—and herself.
Mariah Leach, who blogs at www.fromthispointforward.com, inspires countless individuals living with rheumatoid arthritis/rheumatoid disease (RA/RD), helping them realize their disease does not have to define their life. At 34, she is a mom of two young boys, a wife, writer, patient advocate, and a person living with RA/RD. Mariah is proving that former titles don’t matter in life; you will always be who you were, but what’s more important now is to focus on being happy, and feeling as well as you can.
In June 2008, at the age of 25, Mariah was diagnosed with RA/RD. At the time, she was a dual-degree student at the University of Colorado, working simultaneously on a law degree and a master’s of science in environmental policy. She was also a member of the law journal, worked as a newsletter editor and events planner for an environmental research center, and was on the University’s club water polo team.
An Early Diagnosis ≠ Optimal Care
It started with acute pain in her toes, then fatigue and anemia, followed by pain and swelling in her wrists and fingers. Since the symptoms appeared one at a time, Mariah could easily excuse them—she had recently injured her foot, exhaustion was obviously from being so busy, and her hands hurt due to the amount of time she spent typing.
She thought once the stress of the semester ended and she could rest, she would be better. But she was still exhausted no matter how much she slept. It was during a summer camping trip that Mariah knew something was seriously wrong. Her knees swelled up to the size of grapefruits and they were so painful she could hardly stand or walk.
Mariah was lucky her university’s student health service diagnosed her relatively quickly. She was also fortunate that her rheumatologist was aggressive in finding the right treatment plan, so Mariah could take the classes she needed to graduate. This meant getting on a biologic medication as quickly as possible.
In nine years, Mariah has been on five different biologics through five different insurance plans. The barriers and roadblocks are countless.
She has had trouble getting prior authorizations approved in a timely manner. In the instances when her insurance company has required her to get her medication via a specialty pharmacy, she has faced myriad issues. Sometimes it takes more than 10 phone calls to set up delivery of a prescription; she has had deliveries delayed, causing her to miss doses.
To top it off, Mariah has had difficulty getting insurance companies and co-pay assistance programs to clearly explain their complicated policies and procedures. While grateful for the co-pay assistance programs offered by pharmaceutical companies (without which she wouldn’t be able to afford these life-changing medications), she wishes these programs were easier for patients to navigate.
“I’ve faced endless phone trees where I couldn’t get in touch with a human to speak to. I’ve had difficulty determining which forms I needed to submit to get my funds. And I’ve also been approved for the wrong amount of funds and had to argue about it,” she shares.
Balancing Treatment Options
There is no denying biologic medications are a crucial component of treating Mariah’s RA/RD. But she has also used disease-modifying anti-rheumatic drug therapy (DMARD), steroids, non-steroidal anti-inflammatory drugs (NSAIDs), and opioids to varying degrees. Some have been stopped and restarted around her pregnancies, to protect the babies’ health. Others she relies on only to control acute flares, as the side effects are too much to bear for extended periods of time.
Nonpharmacological options for Mariah include physical therapy and massage (which was particularly helpful while she was pregnant and medication options were limited). She tried acupuncture and went gluten-free for six months, but did not find either positively impacted her symptoms. Although she doesn’t stick to any particular diet, Mariah prepares meals that are as healthy as possible with local, fresh produce and a variety of good nutrients—not only for the benefit her own health but also to demonstrate good eating habits to her kids.
Ensuring that she is caring for her whole body, not just the physical symptoms, Mariah takes nightly hot Epsom salt baths. These soaks ease sore muscles and calm down her nervous system.
“You can’t pour from an empty cup,” she says. “It is important for myself and my family that I take time for myself every day.”
A Difficult Decision
In so many ways, Mariah’s life has changed due to her disease. She was in the middle of school when diagnosed; while she did eventually graduate with both of her degrees (even after having to take a semester off while trying to find a treatment that worked), she was then faced with a hard decision: “I wanted to start a career and a family, and I knew I had to live with RA,” she says. Mariah didn’t think she could be successful at all three at the same time. “So my plans to work were more or less put on the back burner so I could focus on building my family.”
RA/RD made her path to motherhood significantly more strenuous than it likely would have been otherwise. To have a safe pregnancy, she had to stop taking some of the medications—meaning she was dealing with RA/RD that was not fully treated during conception, pregnancy, delivery, breastfeeding, and the postpartum period.
Then there was the significant impact her disease had on her ability to be active. A water polo athlete and active snowboarder prior to her diagnosis, Mariah struggled with not being able to play at the same level due to pain and fatigue. She had to take it slow—first by finding treatments that worked, and then slowly finding new ways to exercise.
For Mariah, movement now comes in the form of chasing her young boys. She also has taken up cycling, a low-impact way to be outdoors, even participating in the 2016 California Coast Classic, an Arthritis Foundation fundraiser.
“Don’t be afraid to try new things,” she says. “I had never been a bike rider or had any desire to be one, but now I enjoy it and it is something I can do with my family.” Even more exciting: After five years of being unable to snowboard, Mariah is back on the slopes. She can do a few runs—enjoying them as much as possible—and then stops. “I know not to push myself,” she says.
A Positive Outlook
For Mariah, seeing new medications coming down the pipeline is exciting. She understands all too well that even if a treatment currently works, there’s no guarantee it will continue to do so. There are presently 8 or 9 biologics approved to treat RA, and at the age of 34, she is already on her fifth one. Realizing the likelihood of needing some kind of treatment the rest of her life (unless a cure is found), she is happy and hopeful to see the development of additional options.
This is also why Mariah feels so strongly about participating in research studies whenever possible, as it provides further insight into the disease and treatment therapies. She especially encourages moms-to-be: “There is not enough data available on using various medications during pregnancy and breastfeeding,” she says.
She wishes the public could understand RA/RD is more than just “a little joint pain.” It’s a serious autoimmune condition; her immune system is attacking her own body.
“The truth of the matter is that RA impacts nearly every component of my life,” she shares.
Additionally, invisible illnesses like RA/RD are great examples of why no one should ever judge a book by its cover. Mariah may “look fine” or seem healthy, but underneath she is dealing with intense levels of pain and fatigue. It is her hope that growing up with a mom who has RA/RD will help her boys learn that everyone is struggling with something, and that a little compassion can go a long way.
Words of Wisdom
To the newly diagnosed, Mariah has one important piece of advice: Find a rheumatologist you can trust, who listens to you, and with whom you can work as a team to come up with the best treatment options for your personal situation. RA/RD impacts everyone differently.
“Everyone I have ever met with RA has had his or her own unique experience,” she explains. “That means what works for one person to manage pain and other symptoms may or may not work for another.”
Mariah even has a great piece of advice for caregivers. There is an ongoing chronic nature with RA/RD, and the need for help can feel endless.
“Saying ‘Let me know how I can help’ is a genuine offer’,” says Mariah. “But it forces us to make an ‘ask.’ Instead, make the offer: ‘Can I take the dog for a walk?’ ‘Let me unload the dishwasher.’ ‘How about I pick up your kids from school?’”
Mariah’s blog started as a personal online journal but has become a public site with countless followers. She also created the private Facebook support group Mamas Facing Forward, for moms living with chronic illness.
“It took about two years to fully realize that blogging was a way I could connect with others living with RA who would actually understand what I was going through,” Mariah says. “I discovered that by talking to others living with RA (and other chronic illnesses), we could band together to support each other and advocate for awareness and improvements in health care.”
For over nine years, Mariah has been gracefully living with RA/RD. With her incredible husband Austin by her side, her supportive mom, her adoring boys, and numerous friends, she is finding balance in a life filled with unpredictability at the hands of her disease.
“I am not comfortable letting RA make my life decisions for me,” she says. “I still want the decision to be mine. Having RA may change the way I have to live or how I will achieve my goals, but it won’t make reaching my dreams impossible. I will still go after what I want.”