I spent the entire weekend documenting everything I’ve tried for my MS. Thank God for iCal, my Amazon order history and the “purchase” file I keep in my email app. I’m not surprised by the vast majority of medicines, therapies and equipment as much as I’m shocked at what I forgot. For example I literally had …

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Living With MS: What I Wish I Had Been Told When I Was Diagnosed

August 6, 2018

If you’re newly diagnosed with Multiple Sclerosis, I’m happy to give you my number with the understanding that you may never call me because:

A) I’m a stranger

B) You’ll probably spend the next 6 months scouring the internet and come across a plethora of amazing and downright dangerous suggestions that you’ll try before calling me or anyone else for that matter.

I completely understand. When you have a disease that doesn’t have a cure, you tend to subsidize western medicine with non-traditional options as you search for answers. Now don’t get me wrong. I’ll happily pop the “MS Cure All Pill” once science creates it. I’m also open to revamping my stem cells and / or fixing or replacing whatever freaky gene caused me to get this disease in the first place. But until the FDA says those procedures wont result in a 3rd thumb growing out of my ass, I’m trying whatever else is available to me.

This approach requires reading lots of articles, researching new findings, discovering new tools and equipment, embracing holistic approaches to health while seeking out new, never-before-heard-of scientific advancements. This happens because when you’re diagnosed with Multiple Sclerosis, besides taking one of the more than a dozen available disease modifying drugs, no one actually tells you what to do. There’s no standard MS protocol to follow. Science has no idea which diet works, which form of exercise is best or which drug is better, thus you fall down the Internet rabbit hole while looking for things to try.

Since I’ve had Multiple Sclerosis for almost a decade I thought I’d write out what I wish I had been told by the Neurologist that warm September day back in 2009. If I could go back to the moment I was diagnosed, this is the pamphlet of information I would give myself and refer back to, daily, during the first year.

A chronic condition is just that – chronic – so you can either spend a ton of time trying to do the impossible and eradicate it OR learn to live well with it. You will definitely find someone online who claims to have gotten rid of MS through diet or visualization or yoga or medical marijuana or a specific medicine or prayer or training for a triathlon or listening to beta waves during REM sleep. But most patients simply learn how to live well with terrible diseases by planning for terrible days while taking advantage of their good days. Of course, good days occur more frequently once you find the best forms of diet, exercise, stress-release, and medication for your particular body, mind and spirit.

But a chronic condition is just that – a condition – which is a state of health that changes. So even if you do everything right, you will absolutely experience a really bad day due to your diagnosis.  Likewise if you don’t take care of yourself, you can skate for a while but it will catch up with you because you’re also aging as you’re skating. Therefore a commitment to general health and wellness is your best underlying defense.

It’s not your fault so cut yourself a break.  You can’t control your genetic makeup or all the environments your parents or loved ones placed you in, growing up. The only thing you can control at this point is your lifestyle choices. Therefore when it comes to any chronic condition the popular adage, “Genetics loads the gun but environment pulls the trigger” is true but perhaps lacking a third element…

“When it comes to health although genetics loads the gun and your environment pulls the trigger, I believe that lifestyle keeps the safety on.” 

Embrace a general, anti-inflammatory lifestyle.  Many medical professionals believe that all diseases start with inflammation. So rather than jumping into strict gluten free, paleo, raw, vegan or keto diets, keep it simple and start by committing to a general anti-inflammatory diet that will decrease internal irritation. Dr. Andrew Weil offers a great diet to start with.

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Move as much as possible. Because MS can negatively affect your gait, balance and mobility, for as long as you can, move, move, move! If I could go back in time, I’d take a daily walk no matter the weather, weekly hikes and basically choose walking in lieu of driving as often as possible, just because I could.

Find the best way to release stress. For some that means yoga and meditation. For others it involves kick boxing or banging out frustrations on a drum set. Other’s require a creative outlet to clear their mind and feel sane. Figure out what you need and do it often.

Give yourself time to slowly grow and change. Begin by eating more vegetables in general before you decide to give up grains, only eat raw foods and throw out your microwave.  The same with supplements, organic foods, and healthcare. In a perfect world I would only eat organic, but if I did that I wouldn’t be able to afford co-pays to see certain providers, buy the cool walking stick I love from Canada or try out the $200 foot-drop brace I found online.

Be a curious scientist about your health not a judgmental, inner critic. Keep a journal and take “data”, focusing on one change at a time. Start by noting how you feel physically, mentally and emotionally when you try something new or different.  Changes take time to go into affect so give your body time to adjust before trying something else and clouding the data.

Remember, this is a marathon, not a sprint. Non-runners need at least 4 months to go from their couch to the finish line. Being newly diagnosed with a chronic condition (that you’ll have your entire life) is like training to run yearly marathons. You’ll need to simply run on a regular basis while figuring out the best way to eat, hydrate, stretch, rest, rehabilitate any injuries, while responding to other illnesses, stress and age-related changes. Twenty year old runners are different from 63-year-old runners. Disease processes across one’s lifespan require just as much adaptation and ingenuity.

Don’t go overboard trying out alternative therapies. In retrospect, I wish I would’ve spent 75% of my time focused on basic, traditional approaches to wellness and 25% of my time exploring alternative suggestions. It would’ve created a better foundation to support alternative therapy today and saved me a lot of time, energy and money.

Find the right healthcare professionals. Doctors and therapists are supposed to tell you the truth but sometimes their delivery and word choice plants a negative seed that can grow wild, weeds in your head.

Personally I try to hope for the best yet plan for the worst. It’s easier to do that when professionals are as curious and positive as I am. If I leave their office feeling discouraged and deflated, I find someone else. Medicine doesn’t know what causes or cures MS so it’s pretty arrogant to think it knows exactly what will or wont work for me. I’m happy to embrace a balanced approach to health as long as they’re happy to encourage me and my ideas. They know medicine, but I know myself.

Be gentle and compassionate with yourself as you figure this all out. It’s taken me a decade to find:

The right professionals to see as needed

The right types of exercise, medicine, alternative therapies, nutrition, stress release and cutting edge information to use as needed.

  • Yoga (Meditation, Pranayama, & Gentle, prop-heavy / chair classes that increase capacity)
  • Equipment (Step Smart brace, Active hands, Urban walking poles)
  • Western medicine (Twice a year Ocrevus infusions)
  • Exercise (Elliptical / Rowing machines & Walking, CARS joint work, Functional Range Conditioning)
  • Alternative therapies (Frequency specific micro-currents, NeuroKinetic Tx, Medical Cannabis),
  • Nutrition (WW / Whole foods eating),
  • Stress release (Writing / Talking with friends with chronic conditions)
  • Cutting edge information (Autonomic nervous system work, Neuroplasticity, Irene Lyon’s Nervous System Work ).

I’m still trying to figure out how much of the above to do and how often to do it. It’s taken me years but I finally learned to figure out what I need with the understanding that it’ll change and I’ll have to tweak everything again. Because of that:

  • I don’t get as mad as I used to when something stops working for me.
  • I try not to let the amount of work required freak me out.
  • I don’t feel guilty for not spending 8 hours each do only focused on my MS.

Seriously did you see the list above? It’s fucking long! If I did everything daily – I’d get nothing else accomplished.

Everyone has a cross to bear. Life throws everyone a curveball or two (or ten). Some have money and marriage problems. Others have health issues, addiction, or mental illness. Some live in cults, suffer from abuse, get bounced around the foster care system or are homeless. People are incarcerated for crimes they didn’t commit or fall victim to institutionalized racism. Many are disowned by their families while others are downright suffocated by theirs. The cross on my back happens to be a health one, but it’s no heavier or lighter than the burdens that others carry around each day.

Don’t compare yourself to others with your same condition. I’m a 51-year-old, married, “doesn’t have to work”, privledged, white woman who is the mother of grown children. I have the time, energy and money to try and fail at lots of things for my disease. If I were a single mom with 2 jobs and 3 kids I wouldn’t have tried a fraction of the above options.

If anything I blog about MS to try and cut through the bullshit to save other’s time, energy and money. Therefore if you have a specific question about something I’ve played around with, reach out. I’m happy to offer my thoughts and point you toward any research I’ve come across so you can make the best decision for yourself.

Lastly, you’re allowed to grieve the loss of your health. I was once told that to surrender means to simply grieve the loss of something. Thus before I could surrender to the process of re-creating my health I would first need to grieve the loss of the healthy life I had expected to enjoy. That doesn’t mean giving up as much as it is about letting go of whatever I had imagined. I often wonder what would’ve happened had I simply taken the time to grieve my diagnosis in lieu of jumping straight into “lets fix this” mode?

Bottom Line:  Don’t try to cure yourself of a disease that the smartest neuroscientists on the planet can’t figure out. Don’t put pressure on a sick body to heal itself without the help of modern medicine. Feel free to use both eastern and western approaches to your medical care but don’t demonize doctors and drugs. A yoga practitioner or a naturalpath didn’t diagnose you. A medical doctor using a high-tech MRI machine did, so don’t rule them out when figuring out your long-term, medical options.

Be positive and give yourself one full year to live as healthy as possible as a newly diagnosed, unhealthy person. After that, start playing around to figure out what works specifically for you and your disease process. Then make a promise to yourself to keep doing the work required.

(And if you ever do want to talk, feel free to give me a call. 🙂

This post was edited for clarification on August 7, 2018 to add more resources on October 29, 2019 and to add links and updated resources on April 21, 2020.

When you have a condition that affects mobility, traveling anywhere involves planning, research and in some cases stress-induced, ingenuity. Normally when I attend a Politics and Prose book reading it’s held at Sixth and I. This historic DC venue is one I’ve scoped out, mastered and feel comfortable navigating either via car or public transportation. …

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A few months ago I was frustrated by my continued gait dysfunction. No matter which medications I’ve taken (Copaxone, Tysabri, Ampyra, Low Dose Naltrexone), therapies I’ve attempted (yoga, Feldenkrais, Anat Baniel Method, physical therapy, myofascial release, basic calisthenics), or medical equipment I’ve purchased (AFOs, foot drop braces, canes), my walking was going to shit. I’d …

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Day 33: Failing to Give Up Something for Lent

February 10, 2016

Although I thought about giving up carbs, sugar, snacks, and even wine, I’ve decided that this year instead of giving something up, I’m vowing to do more.

For the next 40 days I’m going to try like hell to eat the 5 recommended fruits and vegetables and drink 5 glasses of water.

Although I love vegetables, I don’t always eat the recommended amount. I like cooked vegetables more than raw, especially when it’s cold out. Add to that how cooling fruit is in general to the body and you can understand why this time of year I don’t eat much fruit at all.

That doesn’t mean I can’t warm up applesauce or eat more room temperature bananas. I also find that pairing an apple with a healthy fat (almond butter or cheese) helps make it more palatable.

Since I tend to eat more hot soups than cold salads during the lenten season, I plan on throwing sautéed onions, warm whole grains or more healthy fats (salmon, chicken, etc.) onto greens so as to eat more salads on these colder, winter days.

I’m terrible at getting enough fluids in me and one of the problems with MS is having a sudden urgency to use the bathroom. Drinking more water when you can’t dash to a toilet as needed, seems like a bad idea. Here’s hoping that my next failure isn’t me describing how I had to tie my coat around my waist and shamefully, waddle out of a restaurant before Easter.

Wish me luck and feel free to join me if you’ve been looking for a healthy-but-not-too-crazy Ash Wednesday idea this year.

Day 32: Failing to Understand Trauma

February 9, 2016

Until recently, when I heard the word trauma, I thought of big, excruciatingly painful instances like rape, natural disasters, torture or soldiers suffering from PTSD. I never thought of myself as a trauma survivor but now that I know more about the body’s stress response system, I understand that everyone on the planet has been effected by trauma.

Trauma, the Greek word for “wound”, shows up eventually. If you’ve ever experienced any of the following: the sudden death of a loved one; divorce; physical / emotional / verbal / sexual abuse; car accidents; bike wrecks; bullying; surgical procedures; sporting accidents or injuries; bad falls; being involved in or witnessing a crime (burglaries, shootings, muggings); riots; animal attacks; serious illness or injuries; war; terrorism; natural disasters; abandonment; prison; non-voluntary, institutional confinements; near death experiences; being publicly shamed; or severe neglect – you’ve been traumatized.

Although trauma is subjective to our rational brain, it’s all the same to our nervous system. It is whatever automatically triggers our body to go into flight, flight or freeze mode. In other words, coming upon a rattlesnake on your weekend hike is no different to your adrenal glands than being called out in a staff meeting for a mistake your boss actually made.

These changes to your nervous system (while your body assesses the threat at hand and decides what to do) are fine if you’re actually going to fight or flee. You get to use up the energy that you’ve created via punching, kicking, yelling, running, screaming, climbing or crying. You get the luxury of completing the stress response cycle.

But look back at the list. Think of all of the traumas that you’ve simply tabled. Remember that car accident when you hydroplaned into the median with your kid in the backseat? Once you realized that no one was seriously injured, did you shake and cry?  Or did you suck it up and tell your toddler who’s lip was quivering, “Don’t cry, Sweetie. We’re fine.  The car has a boo boo but we’re okay.”

And later when you called your mom to tell her about your accident, did you cry then as you relived the event? Or did you not give yourself permission because you were fortunate enough to walk away without a scratch from something that kills others every day of the week?

That is a great example of when being an animal is better than being a person because animals don’t have to follow our rules of decorum. If a dog had survived the same car crash she would’ve gotten out of the car and shaken like crazy right in front of and along with her puppy. And if that same dog had been screwed over in her staff meeting, she would’ve shown her teeth, growled and dominated the hell out of her boss right there in the conference room until he admitted (with his tail between his legs), “It was me who lost the dog bone account, not her!”

It’s this inability to follow our impulses and our lack of completing stress response cycles that’s making us sick and slowly killing us. What’s crazier still is that we don’t know that we can deal with this evolutionary response in ways that keep us safe without causing chronic illness and emotional issues.

I’m fairly certain that my inability to complete a variety of stress responses has been my biggest failure to date and I’m guessing you’re not so great at it either. If you’d like to change this for yourself, go back to my post on orienting and start there. Orienting is a simple, cheap and easy way to sense where your body is holding onto stress, keep your breathing in check while noticing that you’re safe.

As I continue to explore this particular failure, I’ll pass along what I find in terms of what else can be done.

Day 27: Failing at Tysabri

February 4, 2016

Tysabri (Natalizumab) is for sure, the most spectacular drug failure that I’ve experienced. But first a little background information.

Drugs, like all medical procedures, fall on a continuum. Because doctors in general want to first do no harm, whenever possible you are offered options with the least amount of side effects. It’s when those options fail that docs begin offering you crazier drugs with shittier downsides. And since you’re losing function, you start to justify the risks.

Just to review: Copaxone put me at risk for injection site itchiness and shortness of breath. Ampyra put me at risk for seizures and kidney problems. Good ole Tysabri put me at risk for liver damage, a weakened immune system and a fatal brain infection.

Before you start Tysabri you must have your baseline liver values taken and be tested for the John Cunningham virus. The JC virus is a type of human polyomavirus that by itself isn’t a problem. It’s when a person is immunodeficient or in a state of immunosuppression that JC becomes problematic as it may cause the often fatal progressive multifocal leukoencephalopathy, (PML).

Although my liver function was fine, JC titers in my blood put me at risk for PML. This didn’t mean I couldn’t have the drug, it just meant I couldn’t take Tysabri for more than 2 years and needed twice yearly MRIs.

So of course I decided to take it! I jumped at the chance to go to an infusion center monthly and risk a fatal brain infection in the hope that my slow decline would stop.

I justified this risk by going online and finding JC positive women with 62, 75 and 83 infusions under their belts without complications. Men in private Tysabri facebook groups spoke of their increased balance, energy and improved gait. Most referred to Tysabri as their “magic juice” that gave them life changing energy and stamina.

I on the other hand felt nothing. No positive benefits or negative side effects were noted and because this time my walking actually got worse, I stopped. It didn’t seem worth the risks or the $6500 monthly price tag (thank God for insurance).

After that big bomb, I took a break from my neurologist and drugs in general. It’s just too depressing to keep getting your hopes up for nothing.

I was supposed to start another drug this month but decided against it. I’m over disease modifying long shots with high price points. And besides, with a gait as slow as mine I can’t risk the possible diarrhea side effect of this new one.

You’re welcome.