New blog series alert!
From time to time, Do Well is going to spotlight people who “do well” in life by choosing to naturally support their health. I believe that those suffering from chronic disease/conditions/issues can often feel much better by supporting their system with nutrition, supplements, movement, other lifestyle habits (stress control, sleep, etc.) and alternative/complimentary services. Heck, those without chronic issues could feel a lot better if they did the same things! But, particularly when your body is under constant attack, it needs support for you to feel well enough to function and thrive. I am also a firm believer that being your own health advocate benefits people in many ways – by gaining a sense of control, positive thinking, the placebo affect, etc. So, please welcome our first guest in the Do Well spotlight – the Malleable Mom!
For those who may not know the Malleable Mom, can you introduce yourself and tell us a bit about you and your medical issues?
I am a writer, a blogger and I have a husband and two great kids. I am The Malleable Mom, because as a modern day mother, we all have to be very flexible, right? But literally, both of my children and I have a genetic connective tissue disorder called Ehlers-Danlos Syndrome, which among many things, makes our ligaments and tendons hyperflexible. This causes us chronic pain and injury, among other problems, and in many ways, an even greater need to be flexible in our day to day lives as we face challenges, modify our activity, and problem solve. We are the Flexible Family, and that is where you can find me on Facebook! (@FlexibleFamily)
What part has or does nutrition play in your life? Do you follow a particular eating plan? What specific differences do you notice in your health when you eat “well” or not?
Food has gone from merely one of the stabs in the dark that I made to feel better to my obsession. I had suffered pain from my syndrome, undiagnosed, since I was eight years old. By the time I was in my 20s in Nursing School, it was drastically affecting my Life, to the point where I couldn’t get out of bed, and I almost failed out of school. The only advice people could give those of us with “wastebasket” diagnoses in those days was “live well, eat well, sleep well.” I took that to heart, and stopped living like a college student, and started living with routine and structure. Over the years, regular sleep and eating habits improved how I felt. But I was entrenched in Nutritionism at that time: reading Nutrition Facts, not ingredient labels, and not caring if something was organic, seasonal or local. Now, what is eat, or don’t eat is even more important to me than medicine that I may or may not consume. In many ways, food is my medicine.
After I became a mother, and author Michael Pollan began talking to us all about our dilemma and his food rules, I discovered that I have a huge passion for Nutrition and helping others make positive changes in their pantry (that’s where most of the problems are). I almost started my own pantry makeover business! But I decided to become an Arbonne consultant instead, because I liked their business model and wellness products. By this time, I left my Nursing career for good, because I could not handle the long shifts anymore. Also, I was starting to feel a huge divide between my own health philosophy and that of the Western Medicine world: I was a GI and Endocrine nurse, and I could not believe how we were feeding these kids in the hospital!
The past eight years have been a wonderful food journey for me. What my Nursing/Arbonne career have taught me is that if you are to make habit changes in your Life, you need to set yourself up for success: don’t make so many changes that it is difficult to stick with it, and you give up, or that your family resents the crap out of you and rebels…and then you give up. I practice and preach the idea of making lateral changes first (replace), adding second and then eliminate. Meaning: Replace Ritz crackers with an organic version to get rid of the chemicals, add healthy greens that may be missing to your diet in whatever way you can consume them (hey! Kale chips taste like popcorn!), and then eventually we stop eating crackers and eat kale chips instead, because…processed wheat. But I didn’t go from Ritz crackers to raw milk overnight. The process is s-l-o-w….This became my New Year’s Resolution: every year we work on one way to elevate our diet. One year it was to go all organic with our produce. One year it was to start drinking raw milk. One year it was to start eating only grass fed meat (and that meant eating less of it). Last year I went on a primal diet and eliminated all sugar, because my therapy team told me that I had tendonitis all over my body, and a hair analysis came back showing my body was in extreme stress and that I was developing a sugar allergy! No fruit, no white rice, wheat, or sweeteners. After three weeks, my body completely changed, and the wall of “puffiness” was gone. The sticky scar tissue around my pancreas and liver was also starting to go away. I can tell if I fall off the wagon now, because I get severe sharp pains under my Left ribs where my pancreas is (the organ that is responsible for handling insulin). What I can eat is basmati rice (it pulls toxins out of your body), blue/yellow corn, and sprouted wheat (it acts like a vegetable, not a grain). I also have fallen in love with liquid organic Stevia, and use that exclusively as a sweetener.
My big kick this year has been to DIY my food. We have started a small kitchen garden, and we are canning food during peak season, which has been a goal of mine for many years. This is a fantastic way to save money. We never used to buy canned food because of the preservatives, and this has eliminated a money saving method for me. I have spend thousands of dollars a year at expensive natural food stores to get year-round, fresh produce, and with mounting medical bills, I knew that we needed to make a change. It has been a learning curve to can, and not a small amount of sweat equity, but something we have done as a family (for the record, we haven’t eaten anything we have canned yet, so I don’t know if we are any good at it…). What I am learning is that making food like butter, cheese, and basic vegetable preserves is a lot easier than I thought! With the abundance of information from YouTube and Pinterest tutorials, I have thousands of mentors to guide me.
What other lifestyle habits make a difference in how you feel or cope with your medical issues?
The biggest one has been retiring from work and keeping my Life unstructured. I know this is not something that everyone can do, so this has been a real gift to me from my husband. I don’t know what I would do if we were not in a position for me to stay home. Our condition is very complicated, and we are still trying to diagnose all of the components. I get frequent calls from the nurses offices, and am available to go at a moment’s notice to tape up a kid or bring someone to the doctor to have a part put back together. Also my day is free for the many appointments that I have or to rest…of course, I don’t, and I end up wiping myself out before the kids even come home. But that’s another issue…I find that people with invisible illnesses seem to have this overachieving, Type A personality. It is how I have always functioned. I had no real answers for 30 years, and still I searched. That takes some powerful grit!
What about alternative or complimentary services?
Ha, ha. What I mean by that is, I look exactly like a person who has fallen through everyone’s cracks for 30 years: I have done it all: chiropractors, acupuncture, naturopaths, massage therapists, yoga, reiki, NAET, Nutrition Response Therapy, cupping, dry needling, and my favorite of all of them: just living. People would tell me “You need to stop focusing on your problems and just live with them.” Yeah, well that lasted long enough for my spine to degenerate and my neck to stick in permanent whiplash, so that I had a three year stint of headaches (which I am currently still in). I knew there was something wrong with me, and I never gave up hope that I would find it. Complimentary medicine has been great, and they make up 2/3 of my rehab “dream team,” but I was properly diagnosed by a Geneticist, and my Physical Therapist is my Lifeline. People should not discount Western Medicine entirely by throwing the baby out with the bathwater, as I have sometimes seen then want to do.
You are a funny lady. What part does humor and life outlook play on your health and how you cope with a chronic condition?
Humor is everything to me. About two years ago, I realized that our situation was becoming very heavy. I used to be quite a crier when I was younger, but not so much as an adult. I only let myself have a “pity party” 2 or 3 times a year by crying over my situation. But when my children started looking and acting like me at their age, and worse in some cases, I lost it, because I am the ghost of Christmas Future, right? I went nuts that first year, acting like their own personal Physical Therapist/Drill Sergeant. Now, we all love our therapists, but we don’t have to live with them 24/7. After a few months, I realized that this was not a sustainable lifestyle for any of us. I am a funny person by nature, and I needed to tap back into that. So, I stopped listen to the news or anything depressing during my day. I started listening exclusively to stand up comedy radio to cheer me up. Not only did it put me in a better mental place, I found that laughing helped me manage my pain better, and it made me deliver my messages differently to the kids. We started having more fun, and they started listening more. It was around that time that Jen Balducci from One. nagged, I mean, encouraged me to start a blog to teach people all that I had learned about managing EDS and my family. And the rest is our story!
Feel free to add anything you want! Especially about your kids!
My kids are absolutely amazing. They handle this diagnosis really well. As much as I fear that they will end up like me, I know that this is not true, because I am this way because of ignorance and injury. My kids are being raised with all of the prevention techniques and injury repair that we now know would have saved me from my current state. They do get sad, and cry and say that they wish that they had never been born with EDS. But they also have very active lives, and are learning to adapt to their limitations, which are valuable Life skills. What I am teaching them, and what I am teaching my readers, is that we should never compare ourselves to others. Everyone has their story – their own private battle that we don’t know. We need to set personal goals and do our best only compared to how we did before.
What I love about my “MM” community is that whether people have EDS, migraines, MS, back pain, or are just a tired parent, there is something for everyone to identify with. Everyone struggles. Everyone needs to laugh about it. My friend told me that she reads my page because she loves the fact that I am real, and I am not sugar-coating my Life. You won’t find whining on my page, but you will find a lot of people that aren’t pretending that their lives are perfect. Also, my motto is a dash of wisdom with a shot of vodka: I may drink raw milk and can food, but I am by no means Martha freakin’ Stewart. I do NOT have a Pinterest life. I am on my health journey for me. I am addicted to coffee, and I love the little bit of low glycemic alcohol that I consume each week. One of the first things I did on my primal diet was to replace beer and wine with low sugar cocktails! If this sounds like a place you want to hang, come visit. We’d love to have you!
Ashley is a hyper-flexible mother of two bouncing (literally) kids. A lack of collagen
has left them the world’s worst Superheros (but don’t tell them that). She
writes about the wacky things that their syndrome has taught her family, and
tries to keep everyone chuckling. You can read more at The Incredible Adventures
of Malleable Mom.