Updated: Dec 5, 2021
December 4th 2017, things were very different for my family. I had been diagnosed for 5 years, and began journaling my professional and personal goals, fears, and thoughts. Within a week, I decided that it was time to do the thing I had been avoiding: work for myself. Supporting families along their breastfeeding journey had emerged as my passion years prior, but running a business seemed like it would have been not worth the hassle. Let me say that running my practice is worth it all. It is a pleasure and privilege for which I am filled with gratitude.
At the end of 2017, every week, 2 days I was seeing clients for lactation consultations, teaching 2 Yoga classes, and wearing my Mom and Wife hats. We felt lucky for the plasma exchange treatments that had brought me back to life. I'm not being hyperbolic. What I didn't know is that they were about to stop. I have not had to do what you see in the above photo, in about 2 years.
Let's go back to 2013, when I started these treatments: I could walk, but resembled Frankenstein's monster. There was considerable pain, as my nerves were healing. Thinking was hard, due to the lesions in my brain as well as the medications used to treat the nerve pain, depression, and insomnia. We had to hire a nanny for our daughters (3 years old and 9 months old). I was advised to discontinue nursing the baby. That advice is outdated ** See a forethcoming blog post for details. Plasma exchanges and a newly re-approved treatment provided dramatic improvement, and so began my 18 month-long road to basically the level of ability I enjoy, today. I spent 5 years enduring a plasma exchange every other week. During that time, a new FDA-approved disease modifier would work for 12-18 months, then it would become dangerous to me. I would wait for another one to be approved. In 2017, I started Ocrivus, which keeps the Multiple Sclerosis well-managed. My diagnosing event (12/4/12) is my last relapse. No relapse in 7 years! Despite the best efforts of that disease process, I am #livingmybestlife
Here is how that went down: first line treatments (those with the most clinical research, because they were developed earlier) made me worse. Then, we tried plasma exchanges for which I barely met criteria, and a drug that had been removed from the market. It was removed because people got sick. Other people had great results, and lobbied for compassionate use. The company figure out that a particular virus was making people sick. They got FDA approval with protocols to test for antibodies. None of this would have happened without clinical research.
I "converted" to positive antibody to that virus, so we had to stop it. I waited until there was a new drug scheduled for FDA approval, later that calendar year. A similar story for the next drug occurred. I was maintained with plasma exchanges. TriCare entered a new contract in 2018, and that company denied the treatments. The literature (published clinical research) did not support longterm plasma exchanges. We fought it, but it had been a month by the time I was going to get another treatment. I felt the same, so decided to wait and see. That was almost 2 years ago. To be fair, I had been on Ocrivus for about 8 months, and my MS specialist and I planned to try to wean off the plasma exchanges. I will never know if I could have stopped before Ocrivus.
The disease modifiers, plasma exchanges, and pain relievers were necessary, and my Yoga practice saved my life. I knew how to keep my body as supple as possible, embraced the philosophy that this obstacle had been placed in my path to teach me, and finally learned to meditate. Listening to my true self allowed me to keep going, in the face of little hope.
The way that cutting-edge research, expensive treatments, vitamin D supplements, physical exercise, and mindfulness have come together to manage the MS informs my lactation care practice.
While I know that support can make all the difference in a parent's journey, and respect the power of thoughts, I equally value research and development. I adhere to the standard of evidence-based care. We talk about the existing evidence, what my colleagues say, "In my experience"etc... I respect anecdotal evidence, as it can take time for the anecdotal to be proven clinically, and published. Money. Research also takes money. If something could help, we talk about it.
Clinical research aims to remove the effects of thoughts from the entity being studied. Data analyzed without the emotions and stories behind them is important, because our thoughts can and will change our experience. If all you need is your thoughts, then why buy products that don't work any better? Well, the prop of a placebo allows us to tap into the power of our thoughts, without using processes known as mindfulness. It is a practice that takes time, which a family meeting challenges may not feel that they have. Herbal supplements, for example, could be as effective as the manufacturer implies. Then again, thinking and feeling that you are doing something that could help, can make a difference. We call that "placebo effect" and it is a thing. If taking the supplement helps, then figuring out which is which is beside the point. Either way, feeling like a treatment can help (some would call that having faith) is proven to increase the effectiveness of any treatment.
For the client: We start by getting to know each other. Where are you now? What is your infant feeding goal? We have to customize your plan of care based on your goals. How did you get here? (History, concerns, how you are doing things, now ) What do I think can help? This is where it gets interesting: Several strategies can help any infant feeding challenge, so you help me choose a route that sounds better to you,. Then we get specific, and agree upon a plan, that seems sustainable to you. The better you feel about the plan, the better chance it has of working for you.
How does that relate to the way I manage the MS? Just as several things came together to give me my life back, my approach includes knowledge of the physiology of lactation, tools and supplements on the market, and sometimes referrals to specialists. It is always customized to work for your family. For each visit, I have learned to limit ourselves to 3 changes, then trusting in the process. In the comfort of your own furniture, we work with body mechanics so that Baby can use their whole body in feeding, and your body is supported. Every visit includes 2 weeks of remote support, because how you feel about the way you are feeding your baby can be more important than the mechanics of it. Mindful Infant Feeding was born of this concept.
For now, thank you for reading...