Much Ado About Myelin

I’ve been scarce the past eight months. I suppose I have a lot of explaining to do.

Since giving up bio-medical logistics consulting six years ago, I’ve been very active in my new professional circles. I am a driven, passionate woman who has accomplished quite a bit in the world of Reiki and holistic wellness. I even crossed over successfully into hosting radio and supporting the paranormal community as a go-to energy expert.  Physically I was in impeccable shape. I chose not to own a car and instead I walked at near-jogging speeds to get from one client to the next, pushing my pedometer to several miles a day. My schedule was filling up from Philadelphia to Central PA to South Jersey and I was preparing to expand into North Carolina. I was hosting two live radio shows per week. The possibilities were endless.

And then one day, I began to have difficulty seeing.

From there I went on a painful, frightening tour of Philadelphia Hospitals, emergency departments, doctors and specialists. For a time, I could barely read my computer even with the screen blown up. Eye issues began to resolve (slowly and on their own) and then several weeks later I started to develop numbness and weakness in my extremities, leading me to walk with a cane. I had two MRIs, electrical impulse tests called evoked potentials and even a spinal tap (which did not go as expected). Those of you with any medical understanding at all probably know where this is heading.

Multiple Sclerosis, or MS for short.

Multiple Sclerosis literally means “multiple scars”, referring to the many lesions that appear on an affected person’s brain, spinal cord and other nerves. These scars develop because MS attacks the protective coating on the nerves, called myelin, which then impedes the messages being sent through them. It is a degenerative neurological disease with no known cure and little in the way of treatment though recent medications and those currently in development seem very promising. It strikes far more women than men and generally hits between 20 and 40 years of age (I am 32).

From NationalMSSociety.org:

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.

What IS Multiple Sclerosis?

Scientifically/Medically speaking

Very little is truly known about the disease, even less about what causes it. Most Neurologists and medical researchers agree that this demyelination is caused by an autoimmune response, while a loud minority believe it to be something else-possibly:

Environmental-the disease is one of temperate climates

Heredity-running in families, even though many people with MS report no other family members with the illness

Infectious disease-everything from Epstein Barr to chickenpox and shingles viruses been blamed, but none yet proven causative (more about that theory here)

There are different forms of MS, and I seem to be displaying symptoms of “Relapse Remitting Multiple Sclerosis”, which accounts for roughly 80% of new diagnosis. In this subtype symptoms come and go, with most damage (or at least symptoms thereof) healing between attacks, at least at first. As the disease progresses, damage begins to accumulate and the disease may stop going into remission, at which time a patient has secondary progressive multiple sclerosis.

The truth is we know so very little about this disease that it usually takes months or years to diagnose. There is NO test for Multiple Sclerosis. There are several tests to rule out other possible causes for the symptoms, and rule in damage to the central nervous system. When you eliminate all other potential causes (of which there are a great many) often one is still not diagnosed with with clinically definite MS, but rather “possible MS” or “probable MS”. Generally, this means you will get a clinical diagnosis as soon as the damage is progressed enough to meet standard diagnostic criteria. I’ve coined this interim “livin la vida limbo”. The Ricky Martin tune, however horrible, is still better than this scenario.

How sure a thing is “probable” or “possible” MS? Pretty damn sure. Many people with MS were in this limbo for a while preceding their diagnosis, and nearly all people in this limbo progress and are diagnosed with MS or another rarer like disease. In the series “The West Wing” President Bartlett has Multiple Sclerosis and it is explained that it took two years from the onset of symptoms for him to be diagnosed and start a treatment regimen. That’s the average-about 2 years for a clinical diagnosis. I’ve been having severe symptoms on and off starting only 8 months ago. More about possible MS

Thanks in part to these studies, it is becoming increasingly common to treat people who have not yet received a clinical diagnosis with medication to slow the disease’s progression. Currently my case is not progressed enough for the first line treatments (called “immunomodulators”) which is GREAT news-though I am mentally prepared for the day that changes. I am being treated with medication and physical therapy for the severe muscle stiffness and spasms which are caused by the disease and are proving debilitating, and I’ll go into that later on.

Other theories, and how they relate to Science

This is actually far less Godzilla vs. Mothra than you might imagine. Since I work in the natural wellness field (and as the Host of Healing Arts Radio-currently on hiatus while I heal up from my last apparent exacerbation) I have knowledge of lots of theories, ideas, treatment methods and even independent research that others may not. Some of these ideas make sense, the rest…well…here’s the ones I feel are worth mentioning.

My own thought: what is “autoimmune” anyway? I have another autoimmune condition – celiac disease. This is basically a sensitivity to gluten-the protein found in wheat, barley, rye, kamut, spelt, and triticale. When that protein is present because I eat, say, a piece of bread my body attacks it causing very serious collateral damage to my intestines. The treatment? Don’t eat gluten. Is it possible that MS, and maybe other autoimmune diseases, are really caused by our bodies attacking something we haven’t discovered yet?

One set of theories blames “toxins”- heavy metals, chemicals, pesticides etc. While research has been done here much more is needed. I think the search will continue as society demands answers. Though even if this is the culprit, how long will it take to remove these things from our environment and will it happen soon enough to impact my case? Archangel Gabriel had some interesting things to say about toxins, which we’ll get to in a moment.

My Spirit Guides had some insight. First of all, they said YES, what I have is what Western Medicine could/would call “Multiple Sclerosis”…at least for now. But in about 10 years, there will be more known about this and it will actually be discovered to be about 4-6 different unique diseases; one of which I have. They also said there will be times to take prescription medications because they will help me and encouraged me to get acupuncture. They said the reason I am sick was not a matter of blame, that I had done nothing wrong, nor was I incurring the wrath of “bad karma” but rather that this was something I needed to go through in this life as a learning experience and to help others.

The “It’s a few different diseases” part appears to pass muster. It is a common theory in medical circles, and specifically in regards to Lyme. I tested negative for Lyme disease three times (western blot, elisa, and via the cerebral spinal fluid) and insisted on a course of antibiotics just in case while we awaited those results. For a brief while we held out hope that it was Lyme-while much worse a disease than most people realize, it is thought to be more treatable than other neurological problems (although that is fiercely debated, with good reason). Ultimately, Western medicine and my guides agree again-I don’t have Lyme.

I also want to acknowledge that anything Lyme related is highly controversial in all circles and conspiracy theories abound. I have not come to see anything that makes me believe that ALL cases of MS are Lyme related, though clearly even Science admits some are. There are a few studies out there, but sifting through misinformation about Lyme (on both sides) makes it difficult to find. I’m not going to go into Lyme here because MS is enough to discuss, but Lyme disease is NO JOKE whatsoever and it is also far older than most people realize. If it intrigues you I encourage you to do some serious research.

Archangel Gabriel gave me a message that what was happening specifically in my case had a lot to do with toxins. I grew up in Northeastern NJ, the land of the Superfund Cleanup sites. I was less than 20 miles from at least four such ecological abominations as well as the old Agent Orange factory. On a recent trip home, my sister and I discussed the park at the end of the street where we regularly played as children. It suffers raw sewage backups and also collects a fair amount of runoff from the local highway interchange. It is so polluted I have actually witnessed the swampy water burn a translucent blue flame on one occasion. Toxins you say? Again, more research is needed.

What’s next?

Whatever Multiple Sclerosis really is, it is very bad news. My future is far less certain than it was a year ago…but let’s be honest, there are no certainties in life to begin with. Here I am, still going strong. I get knocked down, I do my best to get back up. There are new limitations and more “new normals” yet to come. Statistics are all over the place, but there is a 50/50 chance I’ll be walking without daily assistance (cane, wheelchair, etc) even 15-20 years after diagnosis, whenever that even happens (I am doing everything in my power to slow the disease and the damage). If things do get that bad, I will just be a great broad in a wheelchair. This disease sucks, but it is only very rarely fatal.

My guides apologized that it had to be this way, and acknowledged that while the road will be difficult, I would be fully supported and best of all it would not stop me from doing anything I had come to Earth to do. Sorry to disappoint anyone looking to glean from my dead practice, alas I will be teaching, treating, doing readings and writing for a very long time.

Stephen_Hawking_050506Shaking your head?

Meet this man: Steven Hawking.

He was diagnosed with a motor neuron disease related to ALS (or Lou Gehrig’s Disease) at age 21, which has left him with virtually no ability to move or even speak. Yet he has contributed more to Science than entire Universities. If he can pull that off, I can pull this off. No problem.

They see me floatin' they hatin'
They see me floatin’ they hatin’

I’ve survived an eating disorder and domestic abuse. I’m from the Newark NJ metro area and moved to Philly because I went there on vacation and thought WOW THE PEOPLE ARE SO NICE (note-they are only nice in comparison to Newark, Detroit, Camden and the 8th or better circles of Hell). I lived on Philly’s South St. for seven years. I defended my apartment by kicking someone who attempted to follow me in, foiled a would be break in by dumping used cat litter out a third story window onto their head, and once had the local police precinct along with all of my neighbors pointing guns at my roof while I yelled at someone for being up there.

Multiple sclerosis. Ain’t nobody got time for that.

I got shit to do.

Yeah, I may not be able to walk 6 miles anymore but there’s more I can do than can’t.

Taking Care

So what have I been doing to keep myself bipedal for as long as possible? In addition to stretching, physical therapy, Reiki, IET, Shamanic healing methods and meditation I’ve been doing plenty. Here’s the skinny on what has been working so far:

Acupuncture with BJ Rau Putnam of North Penn Community Acupuncture:
Auditioning for a Hellraiser sequel
Auditioning for a Hellraiser sequel

Western med might not have decided what I had yet, but BJ had found a surprisingly effective way to treat it-my Guides were right 🙂 Most days I actually left the studio seeing and/or walking better and in less pain. Affordable as anything too: just $100 for a month of unlimited treatments. When I had my first session she reminded me that I couldn’t get too much acupuncture. I went almost every single day she was open for close to two months.

I feel like the most helpful part was having someone who genuinely cared treating me in a warm, friendly non-clinical setting. I still remember the day that I got there two hours early because I couldn’t read the schedule, and then walked into a stop sign I didn’t see. My eyes were welled up in tears when I told her. She apologized and reminded me that it was impressive that I was able to sit and calmly explain to her how I was losing my sight, sensation and ability to walk without a cane to an undiagnosed illness every day. It was a humanizing thing to say at a time when I had started to feel anything but human. I’m really grateful she did that. Thank you, BJ.

Acupuncture with Electric Stimulation, back and neck
Acupuncture with Electric Stimulation, back and neck
Acupuncture with Electric Stimulation, scalp
Acupuncture with Electric Stimulation, scalp

Go let her make you a pin cushion, you will not regret it. If you can’t make it to Lansdale, look for a similar clinic in your area here.

You can also listen to her discuss Chinese Medicine and the Paranormal on a past installment of Healing Arts Radio

Ayurvedic herbs, nutrition and bodywork with Lynn Roberts

Ayurveda is the sister science of Yoga and has some incredibly sound and effective approaches to nutrition. They theorize that each body is different and constantly changing depending on everything from the season to what our physical, mental, emotional and spiritual needs are. Their bodywork methods seem to compliment what a body or part thereof might need at a specific point in time. One of the stranger looking methods, basti, involved making a container on an irritated or affected part of the body (in this case my eye) with dough (gluten free for me) and filling that container with hot herbalised oil or clarified butter also known as ghee. It took some trust to let someone make dough goggles on my face and pour butter in my eyes, but ultimately I am glad I did it. The dryness and irritation of my eyes was greatly improved for well over a week. I went from using eye drops 10x a day to once or twice for a while following that treatment, and was generally more comfortable. I also smelled like cookies for days, and who doesn’t want to smell like cookies?

In addition Lynn was a great friend. She was one of the people who drove me to ERs and Doctor’s visits when I was in too bad a shape to take transit. Thanks, Lynn.

You can schedule with her in Elkins Park, PA, Learn more on her website, or the website of her Yoga studio Banyan Yoga and Ayurveda.

You can also listen to her discuss Ayurveda on a past installment of Healing Arts Radio 


Baclofen
 (prescription muscle relaxer) along with physical therapy

Extreme muscle spasm is very common with MS, and you can read more about it here.

WHAT! You are taking M-E-D-I-C-I-N-E????????? WHY!!!!!

Because it gave me back the ability to walk when daily stretching, herbs, acupuncture, shamanic practices and Reiki were not even enough anymore. And as previously mentioned, my Guides were on board.

Baclofen.svg

Before symptoms started I was able to reach my foot in a stretch. By the time I was willing to try baclofen along with physical therapy, I was hardly reaching past my knee, and my right foot would no longer straiten out. I could barely walk or sleep. Within a week of being on baclofen, my daily stretching routine improved dramatically and I am now almost reaching my ankle again. I just started physical therapy twice a week-getting my stretch on with strangers-in addition to my daily home routine. My goal is to keep as much flexibility as I can for as long as possible. I am happy to have another effective tool available to help me help myself.

Western Medicine All-Stars

If you loathe and despise Western Medicine, that’s your thing, I respect that. But I feel differently. I worked in the Pharma Industry, and I work in the Wellness Industry. I find both sides have their merits, their limitations, and their misplaced values. Choosing wisely on either side can be a frustrating high stakes game though both are well worth considering, at least in my opinion. I’m no hypocrite, I have never told a client to forgo Western Med treatments.

Throughout my ordeal, Western Medicine seemed at best deeply concerned yet confused by my signs and symptoms and at worst dispassionate and unprofessional in their inability to diagnose and help me. The bad ones make me appreciate the good ones even more. In no particular order, here are the Docs I am most grateful for:

Dr. Roth, America’s Best Eyeglasses and Contacts 13th and Walnut

Dr. Linares, Deglan & Greene (Retina Specialist)

Dr. Nissman,  now in private practice in Plymouth Meeting

The Clinic at Scheie Eye, University of Pennsylvania

Dr. Tamhankar, Neuro-ophthalmologist at Upenn and Einstein

And for certain, most of all Mazzoni Family Medicine.

Mazzoni is amazing in every way, I am treated with respect every time I go in and every time I use their web based patient portal. They have been my primary care and referral hub, doing everything from helping me fill out insurance paperwork when I couldn’t see to doing all the labs that the Neurologists praised as covering what would normally be their next step. They are a non-profit LGBT (that’s lesbian, gay, bisexual, transgender) health center. Oh yeah by the way I am bisexual. We exist! Go build a bridge and get over it, or don’t and stay in 1953. See if I care. All I know is that apparently, in this one in a million scenario, it gave me better options for healthcare than I may have had otherwise and I am so grateful for everyone there. EVERYONE.

Why am I sharing all this?

One, it’s pretty obvious I’m not well on the “walking with a cane” days. It’s impossible to hide entirely, and I don’t feel inclined to lie about it. Two, the word has been out for quite a while and when you start getting condolence letters, you no longer have the option to wait for a better time.

Do I “Give a Shit” now?

Long ago I added a post many of you read entitled “Not Giving a Shit as a Spiritual Practice”. A year later, after all I have been through, I am more proud of that post than ever. The Universe was helping me clear some less-than-necessary relationships and assert better boundaries in light of what I was about to experience. Two people in particular, who had been a huge part of my life prior to that realization,  blew up and walked out in an epic huff. It was a blessing. I can’t imagine the pain of both of them abandoning me (in one case, yet again) during this time of physical illness and  emotional vulnerability. I’m happy I had the opportunity to split the wheat from the chaff early on.

Lesson learned: Treat others the way you wish to be treated, and accept no less in return. Fair weather friends disappear. The good ones are worth more than gold. And for the people I “lost”, I am grateful for at least 40 more that were there for me in my darkest hour, as I was there for many of them previously.

Want to do something?

I am NOT accepting personal donations. If this entire blog post makes you want to go out and give someone money, here are my favorite Non-Profits:

The Mazzoni Center – LGBT Health and Well-Being in Philadelphia

National Multiple Sclerosis Society

Restore the Shore A lot of my NJ friends and family lost a lot in Hurricane Sandy and despite the commercials…it ain’t all fixed.

Or, just go do something nice for yourself. Go grab a nice dinner, see a movie, or sit in a park. Bring a friend or co-worker, spread even more happiness. Then post pictures and tag me in them on facebook, instagram or twitter and I’ll enjoy you having a lovely time too.

If you want to see me and share a nice time with me in person, here’s where you can do it:

Wobbly for a Reason Part 1, Myelin on the Run (Philly): Saturday, Sept. 7 starting at 4pm at Coco’s, 8th and Sansom. It’s cozy, welcoming, and the staff are really friendly. Veg and vegan options available. I’ll be there till at least 6pm. I’ll post an event on Facebook ASAP.

Wobbly for a Reason Part 2, Neurological Boogaloo (Jersey): Its not definite yet, but looks like Sunday Sept. 15, 3pm at Jakeabob’s in Union Beach NJ. They lost their original restaurant in the storm, and could certainly use the business.  I’ll post an event on Facebook once the details are firmed up, and will update this post to reflect it.

These events are not fundraisers or anything, just an excuse to have a good time in spite of bad news.

Before you post in comments, elsewhere on the web or Email me

braceyourselffixedWhen I came out and shared my past treatment of anorexia three years ago, I did so to make myself a personal example, a mirror if you will, of the healing arts profession’s views on illness, unfairly judging our clients and scope of practice as it relates to nutrition advice. The feedback I got from colleagues ran the gamut from supportive to hateful. I’d like to again reiterate that I’m not exactly thrilled to discuss this in such a public way right now, but the world keeps spinning just the same.

New blog ground rules: 
  1. If you are someone recently diagnosed or “livin la lida limbo”, please understand that what I am posting here is my own personal experience and/or based on the advice of professionals-board certified and otherwise-that I am working with individually. None of this should be taken as advice in any way-it’s just “what’s working for me, at least right now”. This also goes for anything you find in the comments. Good luck in your search, and always trust your instincts.
  2. My diagnosis-or what any of YOU think I do/might have-will not be a group guessing game. We will not play pin the diagnosis on the donkey, with mine being the unwitting ass.
  3. I will not sit on the receiving end of abusive, hurtful or passive-aggressive feedback, law of attraction based or otherwise. There is no research or reasonable theory that I have found to suggests MS is a direct result of “negative beliefs”. To the contrary, I feel living my life and continuing my career in spite of it involves quite a bit of positivity, and I refuse to allow judgments of others to harsh my mellow. Go read Bright-Sided  by Barbara Ehrenreich (released in the UK as Smile or Die).
  4. I now reserve the right to publish the feedback sent to me in any media related to this blog or it’s subject matter. This is to allow discussion about relevant beliefs and how they help/hinder the healing process and are not to cause any real or perceived harm to anyone’s brand, practice or reputation. That said I will happily remove your name from the post, but sometimes a manner of speaking can unwittingly implicate you. This is especially true in cases of practice- or belief-based jargon, or if you blog, speak publicly or teach in the same speaking/writing style. If there is any chance that you could be embarrassed by your own words, consider keeping them to yourself. I assume and accept ZERO responsibility from any harm-real or perceived-that YOUR words cause.

Thank you for reading. Sorry I kinda bummed you out. But now you know, and we are all on the same page.

I am pretty clumsy these days and can no longer so much as stand in heels. I recently saw this video of models falling and it made me feel a little better. Just for the love of god turn the sound off, the music sounds like a violin being played by a brick with Sailor Moon doing vocals.

Have a great day. I will.

Keep Smyelin’
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13 thoughts on “Much Ado About Myelin

  1. Pt

    You know I will always be here for you, no matter what…I love what you wrote here and I love you D! We’ve been inseparable for 25 years and there’s no way in hell MS is going to interfere. Anything you need, I am a phone call away–even if you need to just vent or cry, no matter what time it is. And I will keep sending you reiki as often as I can! ❤

  2. susanwrotehere

    I shared it on my Blind Urban Mellow page. I thank you for this. I know others who were diagnosed with MS, but I cannot say I understood it very well until I read this .

    I’m glad you said what you did about Western Medicine. Yes, it sucks for many things, but it is great in crisis, and we must turn to it when we need it. And it is good you mention doctors who are able to use Western medicine for healing not profit alone. My own family doctor is one of them.

    Kudos again for the shout out to acupunture. I go to Five Virtues. We are lucky that we can find affordable care, but even more fortunate when the practitioner genuinely cares about us and give us two valuable resource: TIME and COMPASSION.

    Okay, I have to digest what you said. I wish the world didn’t work as it did, but trusting the process is just one more painful lesson. Those of us in Reiki and any community based healing service owe you big for your pioneering work. I love you, Danielle.

  3. Jen harrison

    Danielle you are an inspiration beyond comparison. I am so in awe of your perspective, calm and drive to keep yourself fully engaged with a positive outlook despite one of the shittiest diagnoses.

  4. Robin

    This is an amazing series of words by an amazing person. I love the way you think, feel, do. My best friend from college has MS, I work with fabulous folks who have MS, I fucking hate MS. I want to punch it in the neck. But on your suggestion, I will now go treat myself to a snuggle with my 6 month old cuddle bug and not get so angry. Be well, dear, I hope our paths cross soon!

  5. Rachel

    My dear Danielle, I am so glad you finally have an “answer”…even if that answer brings up some mystery. I do have a good friend who has controlled MS well with his diet, but I am not going to make recommendations or suggestions because you’ll likely get sick of that game (I know I do when I discuss my migraine disease with people). Seems like you have some amazing support around you in terms of people that love you and access to “medicine” (both Eastern and Western). Tell me if you need anything, I’m here!

  6. Ranessa

    I’m so sorry. Thank you for sharing your story. Your resolve is inspiring. I an’t make your gathering this weekend, ut please let me know how I can help.

  7. Nan Lin

    Danielle, I’ve read your post. There’s nothing more devastating than to receive bad news that are health related. I’m impressed and inspired by your strength and outlook. I just can’t believe how much bad shit happen to good people. I wish you the all the best moving forward.

  8. Brenda Claveloux

    Danielle, your writing is so clear and so real. I am sorry for your diagnosis and thankful for the strength, intelligence and fortitude I know you will bring to it. I can relate as I deal with Lupus and a host of other invisible issues. I might see you on Sunday…if not, please keep in touch and I am sending loving vibes your way honey.

  9. Dolores

    Danielle, reading your post, you are such an inspiration, so strong and beautiful, I am so blessed to know you, keep pushing forward, you have so much support from friends, spirit guides and angels.
    Love you unconditionally! You are a brave soul!

  10. Imani Nia

    Thank you for this post Danielle… Just Thank you is all I can say! I adore you and your positivity, determination and raw reflection on life! ^_^ Love you!!!! ❤

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