Creating a holistic health team
MS is a big, scary diagnosis and has certainly come with life-altering implications. It’s also nebulous, unique to each person and something the medical community doesn’t have defined borders around.
Early on in any diagnosis, it’s common to feel like you have to have a narrow window of time and a short set of options to choose from.
Once I passed the initial stages of shock, grief, worry, etc… I asked myself, what if there are more options to explore?
Shortly after I was diagnosed last year, and before I saw my neurologists, I flew out to New Jersey see and consult with a doctor who could uniquely see my point of view. Not because she was a doctor, but because she is a doctor who also has MS. More importantly, she has been off all medication for the management of MS for many years.
I went to talk to her for many reasons, but it boiled down to the fact I needed someone with skin in the game.
I had done my research and needed input from someone both medically and personally qualified that I wasn’t completely crazy for wanting to manage this without any traditional medications.
Staring down the barrel at diagnosis like this can be a bit intimidating at first for many reasons. There is often a limited window of time you have to see a doctor, doctors can bring their experience and bias, they don’t initially know you as a human being aside from the details on your chart, they don’t know your risk tolerance, you don’t know theirs, etc.
Doctors in this situation give you pamphlets to take with you to think about your options. In the case of MS (and in the U.S.), it generally boils down to three traditional categories of drugs with varying levels of risks. You’re expected to take them home and consider your options and let them know fairly soon, which option you’d like to go with.
Specialists can sometimes have a narrowly defined view of treatment and MS is traditionally a drug-managed disease. There are three classes of drugs – injections (Class 1), pills/oral meds (Class 2), chemotherapy medications (Class 3) that come with varying degrees of success rates and a long list of complications and side effects.
Class 1: daily injections, lowest efficacy, lowest rates of side effects, medicine must be refrigerated, Side note: patient (myself) is a wimp ass when it comes to blood and gore and queasy about things like self-injections, patient also likes to travel and can’t see schlepping a cooler of refrigerated medication around the globe for the rest of my life.
Class 2: oral meds, a newer treatment protocol with 10+ years less data, from 10+ years on the market, higher efficacy, higher and longer list of side effects
Class 3: Chemotherapy and chemotherapy-like infusions, highest rate of efficacy, highest rate of side effects (like, but not limited to: heart failure, brain infections, hair loss, incontinence…and the list goes on). Doctors also recommended I not start taking these if I haven’t had children yet, because these aren’t meds you take once and are done, these are things you take for the rest of your life.
To me, those options were all unsatisfactory and not without a TON of risk on my behalf, especially when taking my symptoms into consideration.
Looking through those pamphlets and initial options all felt like they were part of a big map, where every winding road led to a negative outcome, or at least a significant amount of risk, for the one person at the end of the day that had to deal with this – me.
Both neurologists couldn’t really tell me what those drugs would do to me or my disease. Both said I’d likely take something for three to six months before we would know if it was working or not.
I go off of my gut feel quite a bit in general and that feeling said no…except it was more like a hell no.
Pumping me full of drugs for six months and then seeing if it was working? And if not, we’d switch to another drug?
No, thank you.
Advocating for that was a bit different at times and I received a decent amount of push back across the board.
But once I said no, being able to keep saying no became easier and I gained the confidence that I was both able and capable to lead the management of this disease and my doctors were welcome to have a valued seat at the table.
So, after my appointment in New Jersey and meeting with both neurologists, I started to build my health team. I also felt more confident in rejecting the notion that I needed to solely rely on the opinion and expertise of a very limited number of people in this process. If my neurologists agreed to join my health team, they’d be in good company.
I’ve looked at nearly every aspect I can think of and my current health team is made up of the following people:
Doctors who are in my position with this disease or other autoimmune diseases
Two neurologists (one local and one at the University of Michigan)
A naturopathic doctor
A chiropractor
An acupuncturist
My meditation teacher
My primary care physician
My local, organic farmer
A couple of yoga teachers
A couple of reiki practitioners
A reiki practitioner who specializes in medical needs
Countless friends, family through their support
Others in the MS community who I can lean on with questions, issues, etc
The recent and new edition of Dr. Terry Wahls [insert fangirl dance party here] because I got into her diet study and as part of that, she looks at my scans, her team monitors my diet and I will soon get a personal, 1:1 video conference with her.
Anyone else that comes along that feels like they belong here
The biggest change over the past year is that I’m comfortable leading this journey, everyone at the table may not get an equal vote and at the end of the day, I call the shots.
When you have the stress of a diagnosis like this, plus general life stress and likely the acute stress that landed you at a chronic disease patient in the first place, it’s really easy to lose sight of the fact that there are options and you are ultimately in control.