My Do Well journey started when I was diagnosed with Multiple Sclerosis. It was 2010, and I woke one morning with a strange sensation in my eyes. They felt dilated, as when you get an eye exam – but they weren’t. It was a particularly stressful few days due to the passing of my dear aunt who meant so much to many of us. This feeling persisted for a few days and eventually started to affect my eyesight, my balance and my general well-being. I did my best to carry on and ignore it – you know how we mother’s do that. My husband and I have three amazing children. At the time, they were 14, 12 and 9. And – we home schooled. It isn’t what you think…we are not an overly religious family, we didn’t home school our children to protect them from society and no one had any problems in school (all of those are fine reasons for home schooling, but they weren’t our reasons.) We were and are a pretty main stream family, with a retired professional stay at home mom who took it one step further by schooling at home as well.
Eventually I couldn’t ignore my symptoms any longer as the left side of my face started to quickly go numb from top to bottom. This prompted an overdue visit to the emergency room. My husband met me there and we waited for several hours – actually until the wee hours of the morning – while they ran tests, including the dreaded MRI. The doctors changed shifts and the new doctor on duty was noticeably shaken to have to call us into his office and deliver the bad news to a relatively young couple. After much hemming and hand wringing, he finally told us that I had “Probable Multiple Sclerosis.”I spent five long days in the hospital being unwittingly treated with high dose IV steroids for the inflammation in my brain that was apparently affecting my cranial nerves and thus my eyes and face. A combination of the MS and the steroids left my immune system simultaneously flat out and on high alert fighting all the wrong things – mainly my own body. I was discharged from the hospital with slightly better vision and feeling in my face, but with an overwhelming array of symptoms that left me fatigued, shaky, barely able to walk, or see and completely overstimulated by the outside world. I had to ride in the car with my eyes shut –they just couldn’t keep up with the visual stimulation of a moving car. Walking made me seasick. Being at home was a relief, but trying to adequately care for my children, homeschool and maneuver my way through this new world of researching this disease, neurologists and MRI’s was daunting and exhausting. And then….a month later, I awoke with double vision. If you have never had this experience, I hope that you never do. I had the type where if you open both eyes – you see a distorted double version of everything – sort of like a tv that hasn’t come into focus or one that is on its way out. If you close one eye, you can see almost clearly. The two eyes just won’t work together. And it makes you very motion sick, queasy…and completely unable to drive. Every morning for four months I would open my eyes first thing in the morning and look up at the smoke detector on the ceiling in front of the bedroom door – and think, two red lights or one? For four months, the answer was two red lights.
With one eye covered, I threw myself into researching this MS disease, securing doctor’s appointments and getting more MRI’s. After scores of phone calls and a few false starts with area specialists, I was able to get a long overdue appointment with the best Neurologist John’s Hopkins has to offer for MS. With the new double vision symptoms, a thorough round of neurological tests in his office and the confirmation of at least six lesions on my brain, he gave me a definitive diagnosis of Relapsing Remitting Multiple Sclerosis (the most common form of the disease with temporary periods of relapses and remissions). Unfortunately, this amazingly educated and kind doctor had nothing more to offer me than the previous neurologists I had seen – lots of drugs. Drugs administered to myself through a needle (there were no oral medications at the time). Daily injections with side effects of possible injection site allergic reactions and skin/fat dimpling or every other day injections with flu like symptoms on the off days. The cost to my insurance company was more than $25,000 a year. I couldn’t imagine any of those options. I did order the injection kit – just because the Doctor seemed so certain that I should. But I never opened it. And I never returned the calls to the pharmaceutical company that kept ringing my phone two times a day to see when I was going to place my first order. A small voice in my soul – intuition – whispered that I should do some more research first.
My research led me to see an amazing Functional Medicine Doctor – these doctors look at your body as an entire system and approach your illness and wellness in such a way. Given my symptoms and location in Maryland, she tested me for Chronic Lyme Disease. When I tested positive with several different tests, I began to have an even deeper understanding of the trigger for my MS and neurological symptoms. Lyme induced MS they called it. Lyme Disease that I faintly recalled acquiring many years before after a camping trip with the kids in which I spent the following winter with a strange illness of fever, sore throat and incredible fatigue (but no bulls eye rash because only 30% of people actually develop that telltale sign). While there seemed to be nothing I could do to completely reverse the damage in my brain, I could treat the Lyme with antibiotics to try to thwart the initial cause of my MS. Which I did through a Lyme Literate MD. A grueling year and half of antibiotics and other medications used to beat Lyme was the best course of action for me at the time. Just over a year of oral antibiotics were followed by three months of an IV port in my arm because the oral meds just wouldn’t cut the illness. At times I had periods of extreme herxing (a reaction from the toxins which over take your body from the die-off of the Lyme bugs) which led to mainly flu-like symptoms, severe headaches, and fatigue that can’t be explained. Eventually, however, the persistence and care of a wonderful LLMD paid off and I was able to beat what we felt was the initial cause of the MS.
Honestly, up until that first moment that I was in the hospital in the MRI machine, I thought that I was healthy. I didn’t smoke, I rarely drank and I maintained a fairly good weight through my childbearing and raising years. But what I started to learn was that my genetic make-up, a few weak links in my system, had been turned on by my environment and infection. Many years of putting everyone else in my life first, lots of lost sleep, too much coffee and not enough nutrient-dense food and water, a deficiency of important vitamins like D and B12, a house full of unintended allergens and toxic cleaning chemicals, a cabinet full of toxic soaps, lotions and make-up, an infection from an insidious bug and a few burdens of my heart that were never dealt with properly….built up to eventually turn on genes that make it hard to be healthy and began to wear my fragile system down. Don’t get me wrong – since the age of twelve, I have been independent and strong-willed and a fighter who had to take care of myself– not what I would consider fragile. But maybe all of this independence had actually left my body and soul a bit unattended to.
And then while I researched and tried to learn all I could about why I was so sick and how to feel better, I stumbled upon anecdotal stories of healing. Healing through nutrition. Healing through yoga. Healing through sleep. Healing through supplements and acupuncture and prayer and positive thinking. Healing journeys that included functional medicine doctors, green juices, organic fruits, infrared saunas, clean unprocessed foods, long walks, deep breathing, sunshine and balance in life. They were inspiring and hopeful stories that no Western Medicine Doctor had ever mentioned to me before. I started to wonder if I could heal this way too. I admit that I became slightly obsessed with how to feel better and how to be well. I had no idea where to start. But start I did. Small steps every day, one idea at a time. Implementing what I learned each step of the way.
I started with nutrition and supplements, early on, even before any of my final diagnosis. I felt strongly that regardless of what I was actually fighting – that a diet rich in nutrients and void of irritants and toxins, supported by supplements – would build a stronger body for fighting. I learned all that I could about autoimmune disease and the role that diet plays in it. I made the best food choices I could given my knowledge and what was available. I learned to not deprive myself – to not count calories, to walk away from the low-fat diet craze – and to eat real food. And let’s be honest – it felt good to be in control of something that concerned my body. I could control what I put in my mouth and make sure that it was health promoting. And that in and of itself felt healing.
I was blessed to find an acupuncturist that cared. She listened and she was interested in my journey and she addressed my symptoms with love. And the actual acupuncture part worked too! She helped to build my immune system in general while also tackling whatever was ailing me most at the time. The hour that I spent on that table each week also became a time to count my blessings, to deep breath, to learn to meditate on the sounds of the ocean playing in the background and to repeat affirmations of healing. I left relaxed and yet rejuvenated each time with a hopeful heart that had been heard. The introduction to a new modality of healing was so important, but the support that was offered was immeasurable in my journey to health. Yes, I had family that cared – but, I truly didn’t want to burden them with my continued worries, or talk of my aches and pains or what I was researching next. I wanted to somehow carry on life with them without “illness” being the center of attention. I needed a place where illness could be discussed and fretted over just a bit, while pursuing wellness. And my sweet yet highly competent acupuncturist was just that place and person.
The combination of strong nutrition and supplementation, some alternative and complimentary therapies, and the listening ear of someone who cared was the beginning of my healing journey. Since then I have learned even more about living a clean life free of toxins and pesticides and hormones. I have studied and learned so much about the mind and body connection to healing. So much about our need for fresh air and sunshine and movement. There have been lessons about balance in life and spirituality and working through old hurts…all of it necessary for healing, including how to stop “fighting” the illness and start living with wellness. I didn’t discover a “cure” for my diagnosis, but I did discover how to heal and do well each and every day.