Don’t Worry, I Am Sooo Healthy

The only people who know I have MS are my closest friends and family. I work hard to keep this circle small because I abhor the expressions on people’s faces when they learn of, well, my incurable disease. The silent stares of pity while, I imagine, they imagine me in a wheelchair. The knitted, upturned eyebrows of worry when they learn that I don’t take “life-saving pharmaceuticals.” I know that I should welcome the compassion. Instead, I just want to punch their sad faces. Even their cheery, generic words of encouragement make me angry. (Hey, anonymous blogs permit blunt honesty.) I feel a gaping, impassable divide between us: the healthy (them) and the convicted (me). Convicted with a life sentence. I don’t want to be reminded. I am quick to remind anyone with ears in this small circle that it has been more than 15 years since my diagnosis, and I have no wheelchair, no cane. I meet my 10,000 step goal each day. Ten thooooousand, that is.

For those to whom I would never divulge my diagnosis, I work very hard to project an image of extraordinary health. I refer not infrequently to my experiences running two marathons (two! not just one; two, I said!), playing on high-school and college teams (I was a tennis-doubles champion! voted “most improved in a single season” on my swimming team!), trekking in the Annapurna range in Nepal’s Himalayan mountains (with a giant backpack and no prior training because I am so darn strong and a little dumb), navigating the uneven pavement on the twisted streets of Hanoi (code words: uneven pavement — a colorful description for most, but a nightmare for anybody with walking problems…not me! I am so healthy, I didn’t even notice the uneven pavement, except I really, really noticed). I have done all of those things over the years and more. More, I said! I don’t mention that most of those activities happened before my diagnosis. While I am still very active, MS has limited me in some ways (a future story).

For both groups, I am “in the closet.” While, truthfully, some days are good and some days are bad, my constant message is: don’t worry, I am great! I am sooo healthy! I practically brag that a bizarre side effect of MS is that I get the common cold much less frequently than the average person. I don’t go into detail about the reason why: my immune system is in over-drive and tends to attack everything from the occasional bug to my own spinal cord. Details.

I feel a distinct pang of guilt for lying to anyone whom I convince that I am healthy because each person’s “disease course” with MS is unique. Despite all of my efforts toward health, I still have an incurable disease and could end up in a very, very bad situation. Let’s be honest. Officially, nobody dies of MS; however, I *know people* in their 30s and 40s with MS in nursing homes on 24/7 care, and the mother of Dr. George Jelinek (who also has MS and is truly as healthy as a horse) died from complications of MS. Dr. T. Colin Campbell says in The China Study, “No group of diseases is more insidious than autoimmune diseases.” Insidious. Ugh. Definition: “stealthily treacherous or deceitful; operating or proceeding in an inconspicuous or seemingly harmless way, but actually with grave effect.” Waaaaaa.

Most of the time, my “lie” is harmless — I spare my friends, family, and even strangers of worry, and their lives mostly won’t be negatively impacted if my health declines. But in some ways, my proclamations of good health are the worst kind of lie. My husband will absolutely suffer from declines in my health — our plans for an international and active retirement — poof. Of course, he could divorce me (and I would let him do it without objection), but I know it would break both of our hearts because we have such a nice life together.

For my employer, which sends me on assignments overseas to conflict zones or developing countries with plenty of uneven pavement — what would be the cost of medically evacuating me, if I am incapable of doing that work that I love? In fact, I did not divulge my MS when I accepted a two-year assignment in Kabul, which in retrospect was an invaluable, life-changing experience. In our pre-travel, preparatory “hostile environment awareness training,” we practiced defensive tactics in gun fire, which required me to run a short distance, bent at the waist with my head tucked down. I could do it, but only just barely, but I convinced the trainers that I was capable. Before and since then, I have taken many assignments overseas without any noticeable problems. If I had told my employer that I have MS, and they had not allowed me to travel due to fears and stereotypes of the worst MS scenarios, what would I have lost? As well, what risks did I knowingly incur for myself and my employer? Was I selfish, stupid, or hopeful — or maybe all? I think quite a lot of one of my favorite books, “Crime and Punishment,” in which the main character’s mental health rapidly disintegrates from the guilt of getting away with murder. It’s not such a stretch. This s#!+ could get real.

But is it selfish to be hopeful; to stay “in the game?” Clearly, I don’t want to be “left out” because of what might happen some day. Is it OK to have hope? Yes, absolutely, definitely, uh-huh, yep. There is huge hope, based on scientific evidence, that overcoming MS is possible (see the “Stuff I Love” section on my landing page). I devour anything that fuels my favorite theory: nature loads the gun, but the environment pulls the trigger. My daily choices are a big part of that environment. I believe in my heart — and now I have mountains of evidence to support — that I will stay mobile and healthy if my daily choices are impeccable: if I exercise, eat big organic salads, use only toxin-free beauty products, meditate, sleep a minimum of seven hours each night, journal, cultivate healthy relationships, and spend a lot of time with my beloved, furry pets. Phew, it is a full time job being impeccable.

Except when I am not impeccable, and then I feel a tidal wave of guilt for likely (yes, very likely) subjecting my loved ones to the burden that MS has the real potential to become. I swear that 99% of the time, I reject the cookie or whatever other zillion temptations with which we are pummeled incessantly in the U.S. The other day while on vacation, I ate a microscopic piece of baklava (no wider or taller than the top joint of my pinky) because it looked really, fricken tasty, and I didn’t want to be a party pooper. Everyone else’s pieces of baklava were multiple times the size of mine, and my friends looked so carefree and happy eating it. I actually figured that I had some karmic credit for being so impeccable on so many other days/months/years.

The next day, I got a familiar, totally predictable rash at the corners of my mouth that happens whenever I eat dairy. The rash was just like the eczema that covered my face like a hard mask of red crust for more than a decade before I changed my diet to vegan. Other times, I stay up too late doing something fun and get fewer than seven hours of sleep. I figure that fun cancels-out sleep deprivation in the mysterious cosmic equation. Or does it? No, I am here to remind myself (a blockhead) and you that I am fooling myself, and the cumulative effect of bad choices is bad health for me. For others, enjoy the baklava!! But for me, keep my eyes on the prize of good health. That prize is a million times more enticing than the baklava, even while others knit their eyebrows in pity or confusion, depending on whether they know that I have MS or think I am just a radical health nut and party pooper. For me, dessert is an orange (or whatever fruit). I will never deny that I.want.that.fricken.baklava, while still I marvel at the awesomeness of Mother Nature that provides everything we need, including dessert.

Impeccability is impossible. I know that, logically. But to those with MS who doubt it or who, like me, were mostly symptom free throughout the decade following diagnosis: I say, proceed with extreme caution. MS is not a joke. I would add all sorts of expletives to drive home my point, but I subscribe to the philosophy espoused by Dr. Jelinek that we are not aiming to conquer our disease. We need to care for our bodies.

Ultimately, MS scares the s#!+ out of me, but the evidence fills me with a tidal wave of power. Here, I return to enormous gratitude — for the rash at the corners of my mouth and for the ever-present, ultra-subtle unsteadiness in my walk — that reminds me that MS ain’t going anywhere. I am grateful for the knowledge of what I can eat and do (based on mountains of research) to get rid of the rash at the corners of my mouth; stop the vertigo, numbness, and tingling in my hands and feet; walk more steadily, and so on. And yet more gratitude for the strength to lift really heavy weights in a gym class full of other healthy people, jump rope (even though I can’t run — go figure), and meet my Fitbit goal. In the old days, I hated exercise. Now, I marvel at its instant, positive effect on my body.

The truth is that I can only do my best. My charades to convince you of my glowing health feel like I am dragging a huge bag of wet socks. Your pity devalues all the scientific evidence that I have a right to have hope, and it enlarges the gap between us. So I’ll give you a break if you give me a break. Don’t ask me how my MS is doing, please — I can’t explain it, and it shape-shifts. If you are interested, ask me about the power of nutrition, and *then* I can convince you. Please treat me like any other human being — no pity, no worry. And I will not try to convince you of how great I am doing; I might even admit to you that today is not my best day. I may end up in a wheelchair in the future, and you might get eaten by an alligator. Or vice versa. Let’s just be real and have some fun.

This blog is dedicated to my beloved husband and life partner, who was the first person to disabuse me of the belief that I was powerless with MS, who never lets me pity myself, nor pities me, who always expects the most of me, and who makes me laugh hysterically (the best medicine) when I am crying, angry, or pitying myself. Thank you, Sweetie.

 

My MS Success Story

I really, really want to be an MS success story.

I know it won’t come easy, and I will do whatever it takes.

Diagnosed with MS in 2003, I took Copaxone and then Rebif for years as prescribed by my doctor, as well as got periodic MRIs. With minor symptoms, I never missed a dose, my doctor recommended nothing more, and I did not ask.

Meanwhile, I continued decades of being a junk-food junky. I had always been very thin, so I assumed I must also be very healthy. I surmised that I must just have good genes. I ran two marathons, and I have always loved my job that provides enormous challenges, long hours, and plenty of opportunities for stress.

In 2010, my symptoms demanded more attention. During two different stressful assignments at work, I got optic neuritis twice. My doctor quickly resolved both cases with heavy doses of prednisone. Ignoring the significant long- and short-term side effects, I declared myself a success story.

More symptoms – raging eczema, frequent vertigo, numbness, heat-exacerbated walking fatigue, and so many more symptoms not appropriate for polite company, and additional diagnoses, atopic dermatitis, Meniere’s Disease, etc – led to a dizzying array of pharmaceuticals and endless doctors’ appointments and exams. I started to worry about where this plotline would take me. I couldn’t see through the chaos to my success story.

I found Overcoming Multiple Sclerosis (OMS) in 2011, through a random and fairly desperate search for hope on Amazon.com. I bought the book, Overcoming Multiple Sclerosis and The China Study, and together they blew my mind and introduced me to a world of hope. Until that time, I had never heard the term ‘lifestyle disease’. Success seemed imminent.

I have seen great improvements in my MS symptoms since adopting improvements in my diet, adding meditation and journaling, and generally balancing work and life more constructively. Debilitating eczema and vertigo are gone, since identifying nutritional deficiencies and adding supplements. So often I have felt quite smug, thinking of all the neurologists who told me that I required drugs to manage (never cure) these problems.

Dr. George Jelinek, founder of OMS who himself has MS and whose mother died of complications of severe MS, once wrote that we need meditation most when we believe we are too busy for it. That’s nice, but I want to claim permanent victory. I want to know: where is the finish line? Haven’t I crossed it already because I meditated every day last week? You mean I have to keep doing this stuff almost every day for the rest of my life?

I have fallen off the wellness bandwagon more than a few times. When my health is good (usually after prolonged practice of lifestyle improvements), I drop wellness all too quickly and imagine writing my blog about my success in curing my MS. When my health is not good (usually after a lapse in lifestyle improvements), my instinct is to search desperately for a new silver bullet, rather than return to those things that require daily practice and dedication. I got rid of my eczema and vertigo permanently by popping a few supplements. I can do the same with all my other symptoms, if I just find that silver bullet. Right?

In addition to or instead of OMS, I have tried the Wahl’s Protocol, which allowed Dr. Wahl’s to get out of a wheelchair after six years (voila!), high doses of vitamin D3 (which mainstream doctors insist that I stop), emerging oral pharmaceuticals (with warnings of deadly viruses), more and different supplements, healers, and lately I became enthused about stem-cell transplants, ‘cold therapy’, and medically-supervised, water-only fasting.

My hope is indefatigable, and I will keep searching, but the process is exciting and exhausting. Exciting, because I do believe that research is getting closer to a cure. Exhausting, for an un-ending list of reasons, among them: until a cure is found, I need to be impeccable in my lifestyle choices, not joining my friends for wonderful, junky food and drink that I enjoyed mindlessly for decades prior to discovering OMS. Whatever it takes.

After all, however, I have only one conclusion: there is no silver bullet. No one-off pill to pop for a cure at the root level. There are only my lifestyle choices, which I know work well for me, but I just wish did not take any work on my part.

Had I been diagnosed with cancer instead of MS in 2003, I suspect my focus would have been on extraction of the tumor and resumption of my normal life. I have often felt a version of twisted (and stupid) jealousy for cancer patients, who have a tumor to extract, monitor, or blame. I have often wished that I could surgically extract MS.

To my surprise, I have felt occasional waves of deep gratitude for my MS, even though many more times I have cursed its limitations on my life. MS has forced me to slow way-the-hell down, listen, be patient and compassionate with myself and others, and accept ultimately, albeit usually begrudgingly, whatever MS and life toss in my lap. At the risk of sounding trite, I believe I am stronger as a result of MS.

So perhaps my daily wellness practices, gratitude, and mindfulness are my success story, with many, many more chapters to be told.

Brain Lesions, and Vertigo, and Eczema: Buh-Bye. (Versus Lions, and Tigers, and Bears: Oh My.)

For the full decade before diagnosis with Multiple Sclerosis (MS) in 2003 by the National Institutes of Health, I had severe eczema, which is officially unrelated to MS but which I believe was the introductory performance of inflammation prior to the debut of my MS. My dermatologists (plural) had no solutions. I had no choice but to look for my own.

I was diagnosed with MS at age 31 and took the first of two injectable MS drugs religiously from that day. For the following seven years, I had numbness on my torso, legs, and feet. I also had walking problems, otherwise known as gait fatigue, and one of the most common symptoms of MS. I lost sight in each eye on different occasions. In 2009, I developed vertigo (the earth spinning rapidly) for three days at a time, with maybe one day of normalcy, followed by another three days of vertigo, and so on. I took Dramamine to get through my days. No doctors (neurologists, plural) knew what to do, but one doctor diagnosed me with Meniere’s Disease and prescribed several pharmaceuticals. I never took those drugs; it just didn’t seem logical. How many prescription drugs can one person take?

Throughout these several years, I took annual MRIs (also monthly MRIs for a full year, as part of an NIH study participant), and each one was more depressing, with new and “enhancing” [not good] lesions in my spine and brain. I attended a support group organized by the National MS Society, which provided no useful recommendations about what *I* could do; we talked a lot about the side effects and annoyances of injectable medicine. And a lot of people were crying. My last MRI, before reading about the connection between diet and disease, was in 2010.

There are a lot of ideas about curing MS on the internet. While I loved stories from fellow MS-diagnosed people, I needed something deeply rooted in scientific evidence, and my doctors only pointed me to research funded by drug companies. In 2011, I found the books Overcoming Multiple Sclerosis (OMS) and The China Study in a desperate search for some hope on Amazon. Both made complete sense to me because they are both based in scientific research conducted over decades. After a lifetime of eating total and complete junk and being a workaholic (sedentary, with the occasional marathon), I changed cold-turkey, pun intended, to a whole foods, plant based (WFPB) diet on Thanksgiving 2011. So many of my symptoms improved at that time — vertigo disappeared (until four years later, when I got lazy in my wellness routine; it disappeared again quickly after I got back on the rails). Eczema cleared beautifully.

For better or worse, I stopped getting annual MRIs until 2015 because I was feeling so strong. I already had proof that the WFPB diet was working, and simply was traveling a lot for work — blissfully unfocused on my health. At that time, I decided to stop my injectable MS drugs, which is a controversial decision, but a decision I made nevertheless. My neurologist objected with thinly veiled disdain and a touch of anger. I want to believe that he cared about me, but I have some doubts.

In 2015, I got my first MRI since starting a WFPB diet in 2011, and it showed that my lesions had not only stopped enhancing, but some lesions had totally disappeared, and I had no new lesions compared with the 2010 MRI. My neurologist did not congratulate me or attribute this result to anything specific. In 2017, same results on my annual MRI, and my neurologist said, “keep doing what you are doing.” In 2018, same thing.

More and more research is demonstrating that diet and disease are connected, but my approach to managing MS is not endorsed by many neurologists in the Washington, DC area, or any neurologists that I have found. I have never been a renegade; I have always colored inside the lines. So to say that I was uncomfortable disagreeing with Board-certified medical doctors is putting it very mildly. I was a deer in the headlights for many years, because the standard prescription was not working. My health was declining rapidly, and the prognosis was bad.

Yet, after adopting so-called alternative approaches, strongly based in scientific evidence collected by respectable institutions, my personal experience has built my confidence. Since 2015, I have said goodbye to lesions in my brain and spine, vertigo, and eczema. While I would never be as audacious as to say that my MS is harmless or cured, I no longer feel helpless. I have hope – based on evidence – that my daily choices influence my outcome.

Dr. Facebook (Tales from the Front Lines of Wellness in the U.S.)

As the Senate recently abandoned a pre-recess attempt to pass the American Health Care Act (AHCA) that the Congressional Budget Office (CBO) estimates will leave 22 million Americans without heath insurance, I reflect on my luck in having one of the best employee-provided health insurance packages available, and why it is just one part of the broken U.S. healthcare system.

I have not had to understand the pros and cons of the AHCA. I have friends who have enrolled in Obamacare, and some of them love it, and others hate it, both with similar levels of passion. My friends’ experiences are equally real, but I have not asked why their opinions differ so substantially. My dominant feeling about AHCA, admittedly selfish, is gratitude for not having to depend on a plan that is on such unsteady ground as our politicians debate it. At the same time, I am acutely aware that someday I may find myself without employee-sponsored healthcare, and I cringe to think that the AHCA may impact even private healthcare plans. One way or another, I will depend on whatever the result of this debate will be. So, about my luck…

I have a chronic disease, Multiple Sclerosis (MS), which is mostly under control 15 years after diagnosis. I am familiar with MS’ worst-case scenarios and unsettling implications of the AHCA for pre-existing conditions. My current healthcare plan covers the grotesquely expensive prescription medications, if I chose to take them, which I do not (which is another story). At least I have a choice. I also have all the resources at my disposal to study healthcare options and navigate the healthcare system in which I am so fortunate to be a “member.” I have an advanced degree, which implies I should be able to solve basic riddles. I have 28 paid days off per year and 12 federal holidays. I have weekends and evenings mostly free to organize my life, pay bills, and make sense of communications from my health provider.

Even in my ideal health insurance scenario, navigation of the healthcare system is a second full-time job. I am not complaining. I am grateful to have that option. My friends from OECD countries marvel at my gratitude, based on their own countries’ healthcare systems and on statistics by now familiar to all and reinforced annually with each new study. According to an April 20, 2017 NPR article, analyzing data from the Institute for Health Metrics and Evaluation, the U.K. spends less per person ($3,749) on health care than the U.S. ($9,237). Despite its high spending, the U.S. does not have the best health outcomes. Life expectancy, for example, is 79.1 years in the U.S. and 80.9 years in the U.K. The article goes on to note that, while the U.S. spends more on health care than any country in the world, it ranks 12th in life expectancy among the 12 wealthiest industrialized countries. At the risk of sounding ungrateful, my personal experience – and the experience of friends who have engaged in the U.S. health system for a major illness (an admittedly unscientific, but nonetheless heartbreaking, study) — is that the U.S. healthcare system is as broken as statistics say it is.

My own experience is not unique. Recently, a friend with a very similar set of the best resources available, though with a different healthcare plan available to employees of the federal government, sought treatment for her 13 year-old daughter’s adolescent idiopathic scoliosis. Like MS, scoliosis is a household name as far as modern-day afflictions go, familiar to most Americans. As such, my friend and I believed that good treatments would be straightforward and affordable through co-pays. While our health challenges are quite different, they share symptoms of a broken healthcare system.

Social media-sourced treatment options: Current treatment options for MS and scoliosis are better than the old days — good but with health outcomes that do not inspire hope. Quite the opposite – I personally felt hopeless when seeking options at the National MS Society (another long story). MS treatment options include an increasingly broad spectrum of pharmaceuticals that boast a percentage reduction in symptoms for only one of four MS categories – predictably, for the least aggressive type. I’ve often asked myself, what is percentage improvement for someone who is wheelchair bound? I did not want to wait to find the answer through personal experience. After those pharmaceuticals, you are arguably on your own. Hence, I sought non-pharmaceutical options.

For scoliosis, fusion of vertebrae is generally considered a very good option, even while it can severely limit flexibility and is irreversible with an increased risk of complications compared with simpler, as-yet experimental procedures. In both our cases, Board-certified doctors are understandably reluctant to make career-risking recommendations of any procedure without ample evidence of efficacy, if it is not FDA approved.

Out of desperation and/or exasperation, patients or their guardians seek answers from social media. As crazy as it sounds (and I know it sounds crazy), and despite stern warnings from my own physicians, my friend and I individually have pursued options discovered on organically formed, private Facebook groups. These groups provide a source of hope in alternative treatments for patients and their caregivers from around the globe based on a shared medical concerns. Both my friend’s daughter and I found and have benefited from treatments that Board-certified specialists did not bring to our attention and initially rejected when we informed them of promising options. This obstacle led us both to shop around for Board-certified doctors more familiar with or open to alternative treatments.

A quagmire of bureaucracy: The paperwork. Even the healthiest among us know it well. If you have a chronic or idiopathic disease, multiply the paperwork by a thousand percent. Both my friend and I have had to maintain detailed timelines that track details of telephone conversations with “customer-care representatives” who explain the insurance company’s tangled reimbursement or appeal processes and use bewildering terminology (e.g. appeal versus utilization management), speaking plain English only to emphasize that the insurance company will not guarantee payment via telephone, nor it seems, in writing.

For example, in exploring alternatives to spinal fusion for her 13-year old daughter, my friend found (yes, on Facebook) an experimental medical procedure – Vertebral Body Tethering (VBT) – an off-label use of medical hardware currently approved for lumbar fusions in adults with degenerative disorders. After her health insurance company rejected the Children’s Hospital at Dartmouth-Hitchcock’s pre-approval documentation, my friend appealed again, and her insurance company convened its internal Board of general practitioners with no specialization in adolescent idiopathic scoliosis nor in VBT to review the appeal. Her daughter’s scoliosis worsened significantly (from a 34-degree curvature at diagnosis in October 2015 to a 43-degree curvature in September 2016, while wearing a back brace, diligently doing special exercises, all with increasing back pain. I will not waste your time explaining the painful teasing that any teenager endures while wearing a back brace, nor the fact that girls’ bone growth accelerates during the ages of 10 to 15.

After three rejections by the health insurance company, my friend and her husband submitted an appeal to their insurance company based on humanitarian grounds and copied their Congressional representatives. In response, her insurance company sent a two-page letter. On page 1, they wrote, “we have determined to allow, on an exceptional basis, coverage for the surgery you have requested [your daughter] receive.” On page 2, the insurance company wrote in bold font, “This is not an approval for claim payment. This approval is only a confirmation of medical necessity under the Member’s Service Benefit Plan contract. We have not reviewed your health care plan. Depending on the limitations of the health care plan, we may pay all, part, or none of the claims.” Estimated cost for VBT: $200,000. Fingers crossed.

Institutional resistance to evidence-based solutions: At the risk of sounding like a conspiracy theorist, I have wondered if the system is designed to drive patients and their caregivers out of the healthcare system to reduce expense and increase profit for health insurance providers. For example, in 2014, a jury awarded $37 million to the surgeon who pioneered VBT and performed it for my friend’s daughter. The doctor had patented a fusionless alternative that minimizes [adolescent scoliosis’] impact on the growth, motion, and function of the spine, and he licensed the device to the spine division of Medtronic Inc., one of the world’s largest medical device makers. The verdict – being appealed — was based on the jury’s findings of fraud and breach of contract, including failure to market the device as it had its other license for spinal-fusion hardware.

For my MS, my well-meaning but understandably risk-averse neurologist over a decade sternly rejected my non-pharmaceutical treatment, created by Australian Dr. George Jelinek, who wrote the book, Overcoming Multiple Sclerosis, after his own diagnosis of MS and his mother’s death from complications of MS. Meanwhile, representatives of pharmaceutical manufacturers – in spite of my repeated requests over several years to take me off their call lists — called me each year to wish me a happy birthday and inquire about my disease progress. Oh, how my birthday balloons deflated at their mention of my disease progress. After my MRI showed that several brain lesions had disappeared did my neurologist state, in writing no less, that I should continue my alternative treatment. Such a statement must be a risky move for a Board-certified physician; otherwise, why would doctors resist such cost-efficient – indeed, in my case, cost-free – healing options?

As for my friend’s daughter, eight weeks after her VBT surgery, X-rays show that she has a zero percent curvature in her lumbar spine. She is excited for summer vacation after she finishes camp. Her future is bright, brace-free, no crippling back pain, and no life-long deformities.

Imagine if my friend’s daughter and I had time-sensitive illnesses, such as life-threatening cancer, or we didn’t have the freedom of generous paid vacation and sick time to spend dozens of hours on the telephone with various customer-care representatives. What if we did not have time to maintain trackers of various communications about appeals and research alternative treatments? We know the answer to my questions. The result would be the statistics I cited above, which is the current reality of the U.S. health care system.