HAWMC 2013 – Day 8: The Demyelinators are Langoliers


When I think of what’s happened to my body, resulting in a diagnosis of Multiple Sclerosis, I think of tiny little creatures gnawing away at the myelin sheath that protects the nerves in my brain.

Something like these guys.

langoliers_hungry

Omnomnom… eating all that tasty myelin.

the_langoliers_1

Behold: The Demyelinator

Great miniseries by the way.

As part of WEGO Health’s third Health Activist’s Writer’s Month Challenge, I am challenging myself to write 30 posts in 30 days using prompts provided for the event. Wish me luck, or join me!

 

HAWMC 2013 – Day 6: Dear Multiple Sclerosis


Forty-five minutes left in Day 6; this will be a short one!

Dear Multiple Sclerosis,

Thank you for providing me with the opportunity to make changes in my lifestyle to improve my health. I was not taking care of my body and you alerted me to the fact that I was harming it. You may very well have prevented my body from experiencing future illnesses, such as cancer or heart disease. I am so happy to learn about nutrition, the human body and brain, and the immune system. My only regret is that you did not come along sooner so I could have more time teaching my children about proper nutrition before they left the nest. I can only hope they learned something they can draw from in their future years. While you have been a blessing in disguise for me, I do not wish for my children to know you or your cousins.

I also want to thank you for instilling in me an awareness of others with health problems. I now can appreciate the fact that John Doe slowing me down on the sidewalk may be moving slowly because he could be living with you too. Before I met you, I could not have known what it might be like for him. If John isn’t living with you, one of your cousins might have moved in and become a part of his life. I have shared this awareness with my children and hope they too can be patient with those who may be slowing them down.

The life lessons I have learned as a result of having met you are priceless.

Thank you,

Alahnna

As part of WEGO Health’s third Health Activist’s Writer’s Month Challenge, I am challenging myself to write 30 posts in 30 days using prompts provided for the event. Wish me luck, or join me!

A Few Bad Days; A New Symptom


I missed a few days of work this week. The first day missed was due to fatigue and cramps as a result of my monthly cycle. Some months it passes unnoticed, other months it is all I can notice. I don’t know how the severity is determined month-to-month, but it certainly varies and seems to be unpredictable. Or there could be a pattern, like once a month per quarter, that I have yet to pick up on. It may be worth my while to look into that; added to list of things to do someday.

Anywho,* when my monthly cycle gives me a hard time, the hard part usually lasts 1-2 days and I’m back to my normal self soon after. But not this week. I’ve been experiencing brain fog big time, making it hard to concentrate and focus. I’m. So. Very. Tired. All. Of. The. Time. I discover myself reciting the lyrics to I’m So Tired by The Beatles, although I have slept a wink. I’ve also been slightly woozy; not dizzy, but not 100% woozy. Just, off. It can be hard to describe what these sensations feel like.

I took another day off and stayed home to rest. But the following day at work, I’m still not feeling well. Better, but not better.

The most concerning thing has been the development of a possible new symptom. I first noticed it about a week and a half prior to the start of my monthly cycle. It’s in the lower part of my left leg and, again, difficult to describe. It’s not numb, it’s not tingly, and I know it’s not foot drop, a symptom commonly associated with multiple sclerosis (MS). It could be the first signs of foot drop. God, I hope not. I would like to avoid difficulties with walking.

The silly thing is that it could have nothing to do with my MS and is actually caused by me sitting on my rump all day long most every day… Working! Oh, and vegging on the computer at night. Years ago I experienced what might have been sciatica in my left leg, to which the doctor attributed sitting for extended periods of time.

Or, I could be experiencing an MS mini-episode and the sciatica I experienced pre-diagnosis was MS-related.

Or, I’m an inactive aging person and this is perfectly normal for someone who is almost 41.

Le sigh.

Regardless the reason, I know what I’m not doing and I know what I need to do to improve my health and keep me on my feet. I need to lose a few pounds anyway, and get in shape so I can buy some new work clothes! Since my initial 20-pound loss, my wardrobe has been in limbo and it’s beginning to get a little sad… and worn out… because I wear the same things each week.

New shiny things can be a great short-term motivator; optimal health & proving it can be achieved without pharmaceuticals an even greater long-term motivator.

Sparkling Water

Shiny!

Becoming Well: The Importance of Vitamin D, Minerals, Your Gut and the Nutritional Interventions Necessary for Good Health

Tonight, I’m participating in the first part of a three-part webinar series with Dr. Terry Wahls and hosted by Leanne Ely of SavingDinner.com. All sessions begin at 8:00 p.m. ET and are outlined below.

  1. Today, September 20th, Session 1: The Incredible Importance of Vitamin D & Minerals. Your vitamin D levels are critical; which minerals you must have daily for optimal health. Inadequate mineral intake is associated with the top 10 causes of death and disability; 2/3 of Americans are deficient!
  2. Tuesday, October 30th, Session 2: Friend or Foe? Who or What is Living in YOUR Gut? Your gut is your second brain; how to heal a leaky gut, practical steps.
  3. Thursday, November 15th, Session 3: It’s Time for an Intervention! Your food is the basis of health or of chronic disease; nutritional interventions that may save your health!

Anyone can register. The information presented is for everyone and not exclusive for people with MS or other chronic conditions or diseases. Everyone needs to know this stuff! If you are interested in attending, you can do so via http://savingdinner.com/wahlswebinar/.

* I just figured out where “anywho” came from! It’s anyhow mistyped. And, being Ms. Newb, I am probably the only one that did not know this.

Pulling My Head Out of the Sand and Coming Out of the Closet, In One Fell Swoop


 

I think I’ve finally arrived at the acceptance and getting on with it phase of what one goes through when learning they have a non life threatening disease or chronic illness. It took one year and four months to get here, but I have arrived.

Basically, it went something like this:

I’m living my life, albeit feeling as if I’m trudging through mud for some time, and one day my eyesight goes all wonky. The wonkiness persists for a few days and when there’s no sign of it letting up, my husband and I go to urgent care where my blood is taken. Results indicate I’m perfectly healthy. But my eyes tell me otherwise. I go to the eye doctor, where everything appears to be fine. But they aren’t! We enter the closet. Yeah, I think we entered together. Internet searches galore, and husband mentions what I’m experiencing to a colleague who tells him about someone they know who has Multiple Sclerosis (MS). We shut that closet door.

Once we suspect I might have MS, we look for neurologists with immediate openings in their schedules. But first, I must get a referral from my primary care physician. I don’t have one. My employer switched health care providers a few years ago and I never bothered to find one. So the scramble to find an available PCP begins. We find one, book an appointment, and at said appointment my blessed husband pushes for that referral so we don’t waste any time with further testing. An appointment with an available neurologist is made and within a week’s time I have an MRI  and spinal tap. A week after the spinal tap, we receive my diagnosis of MS… a month after my eyes went wonky.

I am fully aware of how very lucky I was to receive my diagnosis so quickly, and after experiencing my first relapse. I am so very thankful for this. I can’t imagine how torturous it is for those who experience relapse after relapse without a diagnosis. In all honesty, if it hadn’t been for my husband, I would have gone along with the further testing the PCP wanted. More likely in an attempt to delay the inevitable diagnosis.

It truly is a gift to know what is “wrong” with you. But as is said (in cartoon PSAs?), knowing is half the battle. In this case, the other half is figuring out what to do with that knowledge.

So, let’s see. I’m still in that closet. The door is locked and I’m communicating with the outside world through the walls of my closet. I’ve decided to treat my MS naturally and I’m really excited about what I’m learning. I want to share it with the world. So I fluff my feathers and start a blog. It’s going to be great! I’ll document everything I learn and help others newly diagnosed with MS and interested in treating it naturally. But some time passes and I’m not sure I like the idea of relegating myself to MS in that way. There’s more to me than MS. I don’t want to be defined, judged, and/or perceived by others in the light of MS. So I’ll just bury my head in the sand floor of my closet here, continue treating my MS naturally, and be angry that others might be judging me as a diseased person. People like boxing others up and slapping labels on them. I didn’t want anyone applying the diseased label to me.

Head. In. The. Sand.

That’s called denial. I could pretty it up however I wanted by telling myself things like, “I’m just a person who happens to have MS.” A true statement indeed, but in a roundabout way it becomes a belief system entrenched in denial. Especially to an MS newb. I’m new to this for goodness sake! I can’t yet own that statement in the right way.

Enter A New Earth: Awakening to Your Life’s Purpose, by Eckhart Tolle.  I’m really quite appreciative of what this book did for me. It reminded me that I can’t do a damn thing about other people. They will box me up, put a label on my box, and shove me on a shelf in their mental craziness. No matter what. They did it before I was diagnosed with MS, and they will continue to do so. I’m sure I was already in a box on their shelves. My diagnosis provided them with the opportunity to create another pretty label and put it on my box.

It can be hard to resist a pretty label.

Fast Forward One Year

To now. All that above the headline was drafted in July 2011.

Hindsight is truly 20/20. Reading the post now is funny to me… I was putting a label on myself! The closet was a nice big giant box I stepped into, and apparently shut the lid on myself. Like I said, pretty labels are hard to resist.

I’ve chosen to go ahead and publish this year-old draft because I think it’s part of the process some of us may go through when adjusting to our new reality. And the part about labels is important. And then the new part about applying labels to yourself is even more important. To hell with people who box you up, slap on a few labels, and then put you on a shelf. The real problem is when you do it to yourself, limiting potential options and solutions, closing doors you didn’t even know were open!

Don’t do that to yourself.

The MS label is a limitation. If you don’t look beyond it, your options for treatment will be limited to the ones your doctor provides. MS is an auto-immune disease. Auto-immunity is caused by chronic inflammation. Chronic inflammation is caused by a myriad of things, one of which is diet. Which of these myriad of things apply to you and what can you do about it?

You are now free to begin a wonderful journey of learning and discovery as you choose how to treat yourself.

 

5 Steps to Getting Back on Track


Now that I’m feeling better—yes, recovering from my not-so-favorite time of the month can take awhile—I want to document the steps I am taking to get back on track. These steps also work for a weight loss program, not a diet, but a program involving lifestyle change. I lost 20 pounds after I was diagnosed with multiple sclerosis (MS) and began cutting dairy and gluten from my diet, which was a bonus side effect to treating my MS naturally.

1. Begin saying NO to gluten/dairy/sugar-laden foods.

Begin, as in allowing a slip up here and there. Every time I make the right choice, a small battle is won in the bigger fight for eliminating these foods from my diet. This way I can celebrate each victory, making a positive movement upward toward my ultimate goal of complete elimination. If I say yes, I chalk it up to a minor defeat and look forward to the next battle, with determination to win!

A few YESes help balance out all those NOs. Say yes to more vegetables. Instead of wondering what to do with that bag of broccoli wasting away in the fridge, chop some up and add them to a salad. Instead of that yummy looking pastry, get a bag of mushrooms at the farmer’s market or grocery store and add them to that salad.

2. Combat cravings with water.

When a craving for any gluten/dairy/sugar-laden food hits, drink water. While it doesn’t satisfy the content of the craving, it does not go unanswered, free to pester me with its temptation. Drinking water acknowledges the craving, but does not give in to it.

In addition to helping me combat my cravings, it also helps me work toward what seems a ridiculous goal of drinking the recommended half my weight of water in ounces each day.

Currently, I start the day with a full 33.8 ounce bottle of water. I manage to down about half of it, which is almost one-quarter the amount I should be drinking. I’ve got a long way to go!

3. Whistle while you work.

Whistling, or bursting into song, at any given moment can only result in positive energy and happiness. Especially for those around you! I’m pretty sure I’ve never seen or heard anyone whistling or humming angrily to themselves. Is that even possible?

Essentially, this is about choosing to be happy with whatever you are doing whenever you are doing it. Making changes that will  improve your lifestyle is a good thing. It is a thing worthy of celebration.

If whistling or singing are not your thing, then create a playlist of songs that make you happy, and play it often.

4. Connect with the MS Community.

There’s a huge online community of people with MS. HUGE! But I don’t spend a lot of time participating in it. I spend most of my online time reading about and looking up topics that interest me. Currently, that would be food and gardening.

Reading up on how others are dealing with their MS, particularly those who have also chosen to treat it naturally, reminds me that I’m not alone. Sometimes I get lucky and come across gems, such as The Cancer Gene over at The Self-Healing Coach. What affected me most was in Karen’s response to Greg’s comment:

illnesses are indeed the universe’s calling to us to evolve. evolve or die. and though some choose the latter, the call to evolve is a great one to get, if you answer it and step up. and i consider myself privileged to have received it

Wow. You see what she did there? She made some really yummy lemonade with her basket of lemons. Considering my diagnosis to be a calling from the universe to help contribute to humanity’s evolution is revolutionary, to say the least. How can I say no?

So yeah, connecting with the MS community can not only serve as a reminder that I’m not the only one living with it, but it can push my reset button, providing me with a ginormous ah-ha moment… with fireworks.

5. Plan and prepare.

Ugh. This is where everything can fall apart for me, and usually does. If I do not plan and prepare, I am more apt to eat food I shouldn’t.

When starting out, or getting back on track, the simpler the plan the better. For one week, eat the same food for lunch, breakfast, and then dinner. Have a piece of chicken and handful of baby carrots for breakfast every day. Cut up a piece of chicken and put it on a salad for lunch. Cook frozen vegetables for dinner, and eat them with a piece of chicken.

The preparation for that simple plan is shop for frozen chicken breasts, frozen vegetables, baby carrots, lettuce or spinach, and other fruit/vegetables/nuts for the salads. On Sunday, cook enough chicken for the week, maybe even shred some baby carrots for the salads, and chop/slice/dice the other salad ingredients.

It’s really quite simple and, yes, plain. I add flavor with spices and seasonings, my favorite being olive tapenade with the chicken and vegetables for dinner.

So, that’s it. Those are the things I’m doing to help me get back on track and hopefully return to that “best-I’ve-ever-felt” state of mind and being I experienced last summer.

There are certainly more steps and things to do, such as eliminating coffee or exercising, but these are the foundational steps that help me get moving in the right direction.

It Was One Year Ago Today: Vision Problems


It was a Thursday. The afternoon of February 4, 2010. My eyes began misbehaving. I would refer to it as a dizzy sensation, because I knew of no other way to describe it. I wasn’t dizzy, but my vision was.

The dizzy sensation was faint. It was like when you are lying/sitting down, stand up real fast, and experience that flash of a head rush. But it persisted, ever so faintly. The next day, it remained. I worked a full day, expecting it to go away at any moment.

But it didn’t.

It was still there when I woke up Saturday morning, and stronger. My husband and I thought I might be experiencing a visual reaction to our new 27” iMac we bought the previous week. The wide-screen certainly was an adjustment! If it was a reaction to the wide-screen, surely it would clear up in a few days.

I stayed home from work on Monday, to rest. Perhaps a full day resting at home would help make it go away? With a family, it can be hard to rest during the weekends. A nice quiet day at home might do the trick.

But it didn’t.

Tuesday morning was no different from Monday morning. The night before, we decided that if there was no change Tuesday morning, we’d go to urgent care. So we did. They took blood and a few days later they had the results. Nothing. As far as my blood was concerned, I was perfectly healthy.

I stayed home from work the entire week, resting and hoping it would just go away.

But it didn’t.

Why I Decided to Treat My Multiple Sclerosis Naturally


When my husband and I began to suspect I might have multiple sclerosis, we spent a lot of time trying to learn how this could have happened. What variables in my body combined to make MS possible for me? Kinda like an equation, y’know? (X + Y) – (A x B) / Z = MS

This line of questioning led us to approach our “investigation” from the perspective of autoimmunity, not MS. I could have an autoimmune disease named multiple sclerosis. We learned that I could manage my autoimmune disease, of which there are many, by changing the way I eat. I wouldn’t have to stab myself and inject my body with manmade concoctions… isn’t that what I have been doing with processed foods anyhow? Plus, the side effects were much better than any of those caused by the pharmaceuticals! (I’ve lost 15 pounds this year) We already had The Paleo Diet book, so I began reading it and it made a lot of sense to me. The premise being that our bodies have not evolved as fast as our food supply has changed – we just can’t process these processed foods and are making ourselves sick with what we eat.

At my spinal tap appointment, the neuro gave us 3 different binders on 3 different drug options. I knew then that if the test results were positive, I would pursue a natural treatment. As we left, with 3 binders stacked in my arms, I knew I wouldn’t be opening any of them.

Since then, I have read The Anti-Inflammation Diet & Recipe Book (Black), The MS Diet Book (Swank), and Overcoming Multiple Sclerosis (Jelinek). I also watched the 7-part series on YouTube, The Paleo Diet and Multiple Sclerosis. It’s a recording of Dr. Loren Cordain, the author of the The Paleo Diet, giving a presentation sponsored by Direct-MS.

In the past 8 months since my diagnosis, I’ve gone back and forth trying to decide which diet to follow. The best I felt was when I was caffeine/dairy/gluten free for a few weeks. It really truly was the best I’ve felt in years… and I was just diagnosed this year. I should have stuck with that, but reading Swank’s book convinced me I could do gluten. Then Jelinek’s book arrived, and his advocacy for no meat at all made me throw my hands up in the air! If I combined all these diet recommendations, all I could eat were fruits and vegetables.

Thankfully, this weekend I came across an article by Dr. Mark Hyman* which led me to his website and the “7 Keys to UltraWellness.” Based on what I read there, I returned full circle to what I had learned about The Paleo Diet. And you know what was really fascinating? The bit about our mitochondria and energy (Lesson 6). Now I totally want to order Minding my Mitochondria by Terry Wahls!

As my early research about MS led me to autoimmunity, so has my research on how to naturally treat my MS. It’s really a new way of thinking about how we take care of ourselves… PREVENTION by way of putting good things into our bodies. Doesn’t it make perfect sense?

This website explains it all so very well. Much better than I ever could. You can start by choosing one of the Lessons that interests you, and once on the site, can explore even further.

7 Keys to UltraWellness

•    Introduction: My Philosophy of UltraWellness
•    Lesson 1: Environmental Inputs
•    Lesson 2: Inflammation and Immune Balance
•    Lesson 3: Hormones and Neurotransmitters
•    Lesson 4: Gut & Digestive Health
•    Lesson 5: Detoxification
•    Lesson 6: Energy, Mitochondria & Oxidative Stress
•    Lesson 7: The Mind/Body and Body/Mind Effect

* Please know that performing a Google search for Dr. Hyman will return results where he is referenced as a “quack.” These are primarily in reference to either his view on mercury and its relation to autism or the fact that he is selling products. Please also understand that he is an advocate for “functional medicine,” a very serious threat to conventional medicine and Big Pharma. There will most certainly be opposition to new approaches! Also know that he does sell products on his website. Don’t buy them! Read the information on the site and determine what makes sense to you and what you can apply to your own personal health plan.

Fitness Boosts Brain Power in Multiple Sclerosis Patients


Multiple Sclerosis  - 75KM Niagara Bike Ride

Image by seannalexander via Flickr

I came across an article on Caring.com that succinctly explains why I ought to be moving a whole lot more than I am now. Have a look.

Fitness Boosts Brain Power in Multiple Sclerosis Patients

Improved cognitive function

I could use some of that!

Less deterioration of brain white matter

I’ll take some of that too!!

What the heck am I waiting for?

For Spring?

Ugh, what a lame excuse. Even before I was diagnosed, I knew I should be exercising.

So… how to incorporate exercise in bad weather?

Well, there are 10 flights of stairs in the building at work. That’s a start… but not all 10 of them on the first try!! Oh goodness me, no! I’ll start with 5 and see how that goes.

A perfect time to do it is around 3:00, when the afternoon slump hits. Once I make this a regular activity, maybe after a week or two, I’ll probably be motivated to look into other activities.

You just gotta start somewhere!

Can’t vs. Don’t


I’m working on the way I perceive the food choices I need to make on a daily basis. It truly is an exercise in mental fortitude. I’m discovering how much my emotions come in to play when I’m presented with making a decision about what or what not to eat.

I have also discovered that it’s much easier to make good choices when I’m feeling great and energized. Whereas when fatigue has set in hard, or I’m PMSing and feeling crappy anyway, it’s much easier to make bad choices.

I recently came across a fantastic post over at Overcoming Multiple Sclerosis, Foods to Enjoy, which has encouraged me to switch my thinking about food choices from “I can’t eat that.” to “I don’t eat that.” What a difference one word can make!

It is important to just say, I don’t eat this anymore and be done with it, rather than tormenting yourself with what you are ‘missing out on’.

And boy, have I been tormenting myself!

I need to plan ahead so that I’m prepared for the times when I’m emotionally down and tempted to lift my spirits with food I DON’T eat anymore. Food is my medicine. I’m taking a dose each and every time I eat. If my dose is bad, it’s going to hurt… and it does. It’s probably like missing a daily/weekly shot, if I had chosen that type of treatment.

Various fruits, vegetables, nuts, and grains; ...

Image via Wikipedia

So… planning ahead… what does that look like?

Predetermined options to combat cravings.

I may have to research this a bit. What could I replace for a fast food burger craving? Something salty, perhaps.

Don’t get caught with your pants down.

Always have the right food choices available, else I am at risk of taking a bad dose. We have gotten in the habit of making sure there are always veggies & chicken in the freezer, so I’ve almost got this one covered. I think we just need to get into a good habit of buying more, bulk style, so my pantry doesn’t get caught with its pants down. So instead of one bag of veggies, buy two.

Food prep.

Life is just fantabulous when I take the time to do this. And really, it doesn’t take that much time. An example would be to chop up a cup of walnuts to put on my salads for lunch at work. Easy peasy, right? I just have to be diligent about setting aside the time to do this (well, not just chopping walnuts!). Sundays seem to be an ideal day. And if Sunday is taken up by something else, I still need to set aside the time.

Meal planning.

Ugh.

It seems easy. It seems productive.

Ugh.

I would definitely need help from the husband and kids to make this work.

Plan for eating out.

For restaurants, look up their menu online. If they don’t have one, call and ask about their gluten/dairy free options. If they don’t have any, suggest some restaurants that do. If there aren’t any, move.

For eating at other people’s houses, politely inquire as to what will be served. If you don’t eat any of it, make your own dish and bring it to share. It’s an opportunity to share how good healthy eating can taste!

This is something I’ve been doing and it’s worth it. I made gluten/dairy free pumpkin bars that were a hit at a birthday celebration this past weekend. I was so proud of myself!

To sum up.

  • Practice trading out the word can’t for don’t: I don’t eat ice cream! (and I haven’t for some time now)
  • Plan, prepare, anticipate, look ahead…
  • Have fun with trying new things!

Oh, and I just received my Overcoming Multiple Sclerosis book today! I am looking forward to reading it!

Michaele Salahi COULD Have Multiple Sclerosis


President Barack Obama greets Michaele and Tar...

Image via Wikipedia

I created a custom Google news category for Multiple Sclerosis and check it every once in awhile. Currently, the big MS news is that reality TV celebrity Michaele Salahi claims to have had MS for years. Due to the controversial figures she and her husband have become, people are debating whether or not it’s a publicity stunt. There’s nothing to debate – they are getting a lot of publicity. It’s no coincidence it was announced yesterday, the same day their ebook was made available.

I’ll be honest, I’m curious to know what is said about Michaele’s MS in the book. I have yet to come across any reports about what detail, if any, is provided about how she’s been living with it for so long. Surely there has to be more to it than, “Michaele has had Multiple Sclerosis for years.”

But I’m not falling into their trap and spending my money on the book to find out.

I just hope she isn’t making it up. If she is, if Michaele does not have MS, then I have to give the Salahis props for choosing a disease that can easily be faked. She could lie that she’s been on the Swank diet for years, which can greatly reduce the disease’s progression. It’s true for people who have MS and choose to treat it with diet and nutrition. Thus, Michaele’s claim to have MS is certainly a believable lie. If she does have it, she’s done a good job managing it, helping to prevent further disease progression. She could be on the Swank diet!

What truly shocked me was how people with MS were so quick to judge Michaele. The last people on earth who should be judging the validity of her claim are those with MS. As we know, it affects everyone differently. Some of us are in wheelchairs, some use canes, and some get around fine without either. This is actually a great opportunity to help educate people about invisible MS, how we can have a disease but “look so good.”

Regardless whether or not Michaele has MS, turn their publicity stunt into an opportunity to explain how someone can have MS and what appears to people on the outside as a normal life. Get the word out and make your contribution to MS Awareness.