April 19, 2013. A day that will forever stay ingrained in my mind. The day life changed. The day I realized nothing will ever again be as it was. This “about” page will likely be the hardest thing I’ll have to write. It’ll be long. But bear with me.
The week before, I had felt some numbness in part of my tongue… Then it spread to the side of my face. I was somewhat concerned, but not too much, figured it was a pinched nerve or something that will work itself out. I went to the doctor anyway, to check. I got an MRI. The doctor called on Friday evening to tell me the news: I have MS (multiple sclerosis). I had her on speaker phone, so my husband could hear the news at the same time. This was not at all what we were expecting. This happens to other people, not to me! I’m only 33. It has to be something else. Right? We held each other and cried.
Searching the internet for MS is pretty terrifying. I couldn’t do it. I stopped eating. I stopped sleeping. My stomach was a constant ball of nerves – not butterflies, but angry, mad hornets that would not go away. My husband, “M” I’ll call him, did all the research for us. He’s amazing. I’m going to say that a lot. You’ll see why. Anyway, he found some alternative research – by Swank, Jelinek, and others – who discovered a diet and lifestyle based recovery. There’s hope?!! Yes, there is. Your neurologist won’t tell you; I don’t know why. It angers me. They ignore so much evidence. Other doctors in Europe and other parts of the world acknowledge the link. Here? Not so much.
I was put in contact with a friend of a friend who has MS. She got it pretty bad her first time; essentially immobile on one side. A friend of hers told her about the diet/lifestyle link – a lady was in a wheelchair, unable to feel touch; after changing her diet, she’s now fine. The friend of a friend whom I talked with, she did the same – 12 years later, no relapses, is able to dance and play music. Another friend of a friend had a similar story. Maria, who has a blog I mention in the links below – 5 years on the new “diet” and getting better each day. It goes on and on. I found a good naturopath who specializes in MS. Of her 700+ patients in the past 13 years, only 2 are not fine (and they are exceptions; men who came to her already in wheelchairs, and she’s unsure of the MS diagnosis to begin with). Those are baffling numbers! Versus what you’d see from a traditional clinic…
So if there’s any possibility at all of living a normal life, for the rest of my life, I will do anything. As much as I complain about hating running, I love the fact that I *can* run. I don’t ever want to be limited. So if I need to cut out meat and dairy and gluten and eat lots of fish – I will. It will be hard, but not as hard as what could happen if I don’t do those things. And you know what? There is a wealth of people who eat this way by choice – and if they can do it, so can I. Plus, they’ve come up with amazing substitutes for things I love (I’m lookin’ at you, butter and cheese!), that are better for both me and the environment (including all the animals I love).
I love food. I love cooking. I love eating. Growing up, I always loved spending time in the kitchen. Traveling – I always looked forward to the great restaurants I’ll get to try; often planning a trip around the food I’ll eat (mmm… bacon! cheese! butter! sweets! eat all the things!). I dreamed of becoming a personal chef, or having a food cart, or something where I could cook all the time. Alternatively, growing up, I didn’t eat fish. I hated it. Getting this diagnosis and finding out I had to change everything, well, it sucked. But as I said above, if it would keep me from becoming one of “them” – the folks who continue to worsen with MS – I would do anything. Surprisingly, hypnotherapy helped get things started. It helped calm my stomach, to start thinking clearly again. To realize it’s not the end of the world, there’s hope, I have strength, and I can still love food! In fact, I now have to cook home more often and become creative with using “new” ingredients and methods of cooking. It’s getting out of any rut I was in before. It’s forcing me to expand my tastes into different things. Healthier things. “M” is joining me on this – he continually tells me, when I get down or feel guilty or whatever, “No – you don’t have MS. WE have MS. We’re in this together. Forever.” I love him more than words, and he has no idea how much this means to me. He’s my angel.
And, in the end, isn’t eating healthy, managing stress better, and getting regular exercise something we should all be doing anyway?
Go see a naturopath. Preferably one that is a little left of right, and a little right of left – mine is great in the fact that she doesn’t cut off traditional medicine; if it seems I should take drugs, she would tell me. But she also sees the power of diet and lifestyle changes, giving me hope instead of the despair I got at the neurologist. At first, it’s just vegan + fish and eggs, but then my allergy test came back saying I’m not so good with eggs or wheat, so that means no eggs, no gluten. Thankfully, I don’t have celiac, but I’ve read that wheat can cause all sorts of auto-immune like responses, so it’s out. Knowledge is power, and it’s better to know than to not know. Not one specific way works for everyone, which is why it’s so important to have a doctor you can trust, who will work with you and customize your treatment to your needs. This is my journey; it may change over time, and likely will. But I know, deep down, that I will overcome this.
A few links I suggest for anyone needing to read something hopeful:
Big MS Breakthrough (brilliant because science! I love science, and know they will figure something out, that’s not a drug that “can cause liver failure and death, compromise immunity, and not sure how exactly it kinda works,” hopefully within my lifetime – sooner rather than later, obvs 😉 )
Dr. Jelinek’s Overcoming MS book (he is also coming out with a “success stories” book soon)
Plant-Based Slow Motion Miracle (this woman is pure inspiration)
Time and time again, I go back to these links, to that “friend of a friend,” to center myself in the knowledge that there is hope – and it’s not a fool’s hope. It’s real hope. It gives me strength and confidence that I’m doing the right thing.
I’ll end with a quote that’s helped me a lot the past few months… It’s from LOTR, but very relevant (I’m a huge sci-fi/fantasy fan):
[Frodo]: I wish the ring had never come to me. I wish none of this had happened.
[Gandalf]: So do all who live to see such times. But it is not for them to decide. All you have to decide is what to do with the time that is given to you.
9 thoughts on “About Me”
Hopefully things will get better for you. Try any and everything possible.
Thanks, LFFL, for your warm thoughts. It’s a journey, and I’ve found (and will continue to find) all sorts of new things to help!
I’m wishing you lots of strength and determination. And I’m so pleased that you have the wonderful support and love from your partner, makes it all so much easier. All the very best to you.
Thank you so much, flavourphotos, for your kind words! It really does help, having the support of loved ones. I am very lucky to be surrounded by people who care. My best to you, as well!
Hello to you dear one! Ohhh, reading your blog for the first time, I wanted to sit down and write you a twenty page letter, exchanging notes, but… We know how time gets away from us! I’m here NOW though…and I’ll keep this as concise as possible! twenty five years ago TOMORROW, April 17th, of 1989, I was told I had “in the top third of the worst cases of MS they’d ever seen” at a prestigious neurological instititute, and had “a few good years left” . Honey, I know and understand DEVASTATED. I was 32. My mother died of Lupus at 33.
Fast forward a few months, through unspeakable grief…I learned of Professor Roy Swank, the head professor of neurology,at Oregon Health sciences university. Here was coming the biggest miracle and GIFT,of my entire life…getting in to see him, (a two year wait list) required calling Every day, looking for that one cancelled appointment…it came, in three months time!
Dr. Swank…with his calm,measured demeanor, almost instantly put ALL my fears to rest with one simple sentence (after seeing my MRI with it’s uncountable lesion load)..He said ,Donna,if you do as I say, you will lead a normal life”. HOW can this be??? I thought. he went on to talk about many, many things, but then and there, my entire way of being in the world, changed…for the better.
The diet he gave me,thoroughly explained by his co worker, right hand and nurse, Barbara Dugan…would be simple I thought. It was. I learned some time later, that the REALLY hard thing! was the deliberate cutting down on energy output each day, (when I was soon feeling BETTER than I had my ENTIRE life)! The daily nap regimen, I adopted and always will, as he implored.
I continued to see him, to call on him from Colorado,where I was then living,for the next ten years, when ever something came up that scared me, or I needed his advice on. I learned Imd found my “calling”. Through the years, I learned along the way, every tip, every nuance of this disease management Ithat I could possibly glean. His book, and monthly newsletters were my salvation…each one full of dogeared pages, yellow highlighter filled paragraphs. What to do, when…weather changes affect how you feel?? (And it does!) What to DO, about…this, that,a million other things.
There was not the internet like we know it today..Ohhh no. Things were done the old fashioned way, slow mail, actual phone calls, etc. I made it though, and YOU will too!
I have long been a mentor or “coach” for the Swank diet, to people from all over the world who find their way to the Swank foundation and need help. I’d be happy to chat with you,either this way, or on the phone,anytime! Let’s just find a mutually agreeable time slot for each of us, and about two hours, si I can give you the REAL scoop, that you won’t find in any blog or online group. What I learned, straight from Dr. swank, and Barbara Dugan. You’ll be…amazed!
This went lots longer than I’d planned, but for now, I hope this gives you the very real sense that you are on the right path!!
all the best!
Hi Donna, Thank you so much for your kind and hopeful post. It seems your anniversary and mine are just about the same. Being told detrimental news from a doctor is so difficult; I can only imagine being in your position. I am so glad you found Dr. Swank and his methods, and that they’re working!! It gives me confidence knowing more and more people for whom this has worked. It’s truly amazing what the body can do given the proper fuel (both physical and mental). Please feel free to email me directly (the link is on the right in the “socialize” area of my blog) and we can chat further. All my best in your continued success (25 years is quite a milestone! Congratulations on your health!), and thank you again for your kind words and encouragement.
Hello! Just wanted to say I’m happy I came across your site. I don’t have MS, but I have celiac disease, and having learned how autoimmune disorders tend to travel together, I will keep checking back here.
I am also vegan, and I feel some resentment after being diagnosed with celiac disease: does all my food have to be fake this and fake that? But after a year of eating gluten-free, I am much more comfortable with it now, and it seems like new products keep appearing all the time. Now if only they would label everything — all the “normal” stuff in cans, boxes, and freezers — as gluten-free or gluten-unsafe, wouldn’t that be nice?
Hi Chessie! Thanks so much for visiting my blog.
It is interesting how these auto-immune issues have so much in common. And that a lot of it is tied to diet and lifestyle! Though those are like the 2 hardest things to change…
I hear ya when you have some resentment about your diagnosis. It’s so frustrating, and annoying, and angering, and sad. But it does get easier, and I’ve been seeing so many more products available that are both wholesome and labeled for dietary restrictions. It sucks it’s taking so long to label everything – especially since ingredients can have sneaky names that aren’t obviously wheat/gluten or dairy or whatever. But I just think about how people who had these issues just 20 years ago – how much more difficult it must have been! So many people have stepped up and are fighting for our food, making things a bit bearable, step by step. I’m very thankful to all those chefs, bloggers, entrepreneurs… Anyway, I’ll be posting a page of products I recommend soon – stuff I’ve investigated and tasted and has gotten my seal of approval, so hopefully you and others might find that helpful. Sometimes you just don’t have time or energy to always cook everything from scratch!
Thanks again for reading my blog and posting a comment – and good luck in your gluten-free lifestyle; we’re all in this together. And I hope you’re feeling heaps better by eating gf!
I know, I’m so much better off than I would have been 20 years ago! Hats off to the gluten-free pioneers.
Can’t wait to see your page on recommended products.
Cutting out gluten made a huge difference for me, although it took about three months before I felt back to normal. Before then, I could barely get out of bed. I’m so lucky I went to a GI doc who knew what he was doing.
Keep up the good blogging.