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.

 

Not Returning to True Intentions and Blaming it on the Cheese

(screwed up that last publish, my apologies for double posting)

In my last post, I confidently declared a return to cutting dairy & gluten from my diet. But I was soon put on alert that my not-so-favorite time of the month was waiting around the corner. I’ve had some cheese, ice cream, gravy, and cocoa. Dairy is my weakness. My knees would agree.

Not only that, but my lower back started hurting, enough to warrant a day lying flat at home… and eating cheese, apparently. I haven’t been very active. The extent of my activity is walking to where I need to go and moving my fingers up and down as they type while sitting for hours on end. The weather’s been getting nicer here. Sunday was gorgeous. My daughter has a class downtown on Sundays. So when I picked her up, I walked about 10 blocks from the car parked in the garage at my work to the location of her class. After her class we went to the mall nearby and walked around looking at a few different shops, then walked the 10 blocks to the car and drove home. It was the next day, later in the afternoon, after sitting at work all day, that my lower back started hurting. I also felt an occasional sharp pain in my left front hip. I figured a night of rest would do the trick, but there was no improvement when I woke the following morning. I stayed home to rest.

This is not the first time I’ve experienced lower back pain like that. One time it was so bad I could hardly walk, and ended up paying a visit to the urgent care. They said it was Sciatica. It could have been. But now, knowing that I have Multiple Sclerosis, but not knowing how long I’ve had it, we wonder if it was related to my MS. Does the lower back pain I am now experiencing have anything to do with my MS? We don’t know. It could be. Google search found people who think their back pain and MS are related. I’m not sure mine is. I think it’s more likely that my inactivity + burst of activity + inactivity = a back trying to tell me that I’m really out of shape. Boy, I sure hope that’s what it is because I can do something about it. I’m already walking around more at work, and have started to take stretching breaks. I just need to make it a habit… baby steps toward a decent fitness program.

Needless to say, my return to true intentions for this blog is on course. Next week, after my not-so-favorite time of the month has passed, I will return to using food as my medicine. I’ll be better prepared anyhow. We need to pick up a new blender so we can make super good for you healthy shakes. I can’t wait to blog about them!

Returning to True Intentions

Boy, it’s been awhile.

I think I figured out something. I do my worst eating when not blogging. I think. It’s been a little over two months since my last post and I have not been eating as I should. The reason I started this blog was to document my progress, blog about new ways of eating and whatever else I learn about MS, inflammation, the food supply, how we are all making ourselves sick. I thought it’d be a great way to help keep myself accountable to my own self-prescribed treatment plan. I still think it would. I just got a little lost back there, focusing on the blog and what to do about/with it instead of just writing.

As of today, I am returning to cutting dairy & gluten from my diet. Focusing on one week at a time seems to work for me. I am also returning to the true intention for this blog. Returning to both these things today will truly help document how changing my diet affects my health and overall sense of well-being.

For example, at this moment, I have a headache. It hurts. I’ve had them most days the past few months. Although I have not intentionally consumed any dairy or gluten today, I know that it will take some time before I begin experiencing the benefits of the change. About a week or two, in fact. It may get worse before it gets better. Such is the nature of withdrawals… yes, food withdrawals. Weird, I know. You can also experience food hangovers—just as fun as the other, more well known type of hangover.

To the return of true intentions!

Post a Week 2011 Redux

My post announcing my participation in WordPress’s Post a Week Challenge was pretty lame.

There was a lot of fuel behind the fire that motivated me to sign up.

Fuel #1: I want to blog more often

Once a day is too much for me, but I’m pretty sure I can do once a week. Because it seems doable, I figured signing up for something to which I would have to commit will help me write more frequently.

Fuel #2: I want to redirect my blog

In all honesty, I don’t want to exclusively write about multiple sclerosis. Sure, it’s become a pretty important part of my life, but I want to write about other stuff too. If I had focused-topic blogs, I’d probably have one on MS, Food, and Pugs. So instead of managing three separate blogs, I’ll just make those my main categories.

Fuel #3: To care, or not to care

Since I started this blog, I’ve gone back and forth about whether or not I should blog at all. People I know may come across it. They may learn something about me they don’t know, something I didn’t tell them (GASP!). Essentially, it comes down to whether I care about taking that risk. I am finally able to say, “No, I don’t care!”

I figure that this is my space and I can do what I want here, regardless if anyone’s paying attention.

With that, I welcome the challenge of posting at least once a week. Now that I have freed myself from being a singular topic blog, I will have more to write about anyway!

Michaele Salahi COULD Have Multiple Sclerosis

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.

Related Articles

• NOT WELL: Salahi reveals MS diagnosis (politico.com)
• Michaele Salahi Diagnosed With Multiple Sclerosis (abcnews.go.com)

Fell Off the Wagon, and it Hurt!

So I’m doing good, eating healthy (no dairy or gluten) and feeling great when along comes “that time of month” and with it, cravings. They are incredibly hard to resist. Brownies were consumed, pizza a few times, cheese here and there, coffee in the evenings, and even ice cream! My body simply cannot handle such foods any longer. I get a painful headache and become very sensitive to noise & light. The headache does not go away, even after taking Ibuprofen or Aleve. They would have done the trick before my diagnosis. Or, more accurately, before my first (and only, so far) episode in February.

It’s really quite easy to make up excuses… too easy! Next month, I’ll have to resist the cravings. Once I give in to one, it makes it that much easier to give in to another, and then another, and then another. And then I find myself in pain. There’s no question about it now, what I eat affects my MS. The week before I felt the best I’ve felt in a really long time. I had more energy, was happier, more motivated, and I really want to return to that state of being. Right now, I’m lethargic, my head hurts like heck, I’m unmotivated and would simply prefer to be lying in bed than doing anything else.

That’s unacceptable. Especially to my family. It’s not fair that they have to suffer along with me because I’ve been eating poorly. It’s not fair to my employer either. Missing time at work because I don’t feel well could have been prevented had I not gave in to my cravings.

The human body is truly amazing. If you listen and pay attention, your body will let you know what it needs and doesn’t need. Although my experience thus far isn’t an official scientific study, it’s enough proof for me that what we eat has so much more to do with the health and condition of our bodies than we know. Doesn’t it just make sense? Garbage in, garbage out. Right?

Oh, and I really have to make the point that this is not exclusive to people with MS, or any other illness or disease. This is true for anyone and everyone. If you are reading this and have not been diagnosed with an illness or disease, try cutting dairy or gluten from your diet and see what happens. I’d start with just one or the other and commit to giving it up for a week. Be your own scientific study and learn how to listen to your body!

Lifestyle Change Ain’t Too Easy

It’s been a little over 10 weeks since I was diagnosed with Multiple Sclerosis (MS). At my spinal tap appointment, the neurologist presented my husband and I with packets/binders of information on three different pharmaceuticals. We were supposed to choose one of the three and, if the diagnosis was positive, return to him with our decision.

We didn’t open any of them.

It just didn’t make sense that a person is diagnosed with a disease and the only option presented for treatment are drugs. Chemically crafted concoctions… to inject into one’s body. Really? That’s it?

Thank God for the Internet. There is so much information about MS on the web. It can be overwhelming at times, but we soon discovered a commonality with alternative treatments. Food. Managing my MS with how I eat, and dealing with the side effects of losing weight and improving my all around health, sounded like the right thing to do for me.

Over the past two months, I’ve read about the Paleo diet, Swank diet, and Anti-Inflammation diet. Not diets for losing weight mind you, although it is a nice side effect, but diets for a permanent lifestyle change to improve overall health and to treat my MS.

Dairy-Free

What really hit home for me was the recommendation to cut dairy. I’m lactose intolerant. Ironically, I love creamy and cheesy foods. My favorite soups are creams of this or that, my favorite dessert is ice cream, and I can’t get enough cheese. Boy, how I love cheese! After consuming dairy, I feel congested, phlegmy, and sluggish. Because of this, I had already reduced my dairy intake.  Since my diagnosis, I continued to reduce my dairy intake to almost nothing. It’s only been in the past week that I have entirely removed it from my diet.  My last piece of pizza was Sunday, May 9… mmmm… yummy melted cheese on pizza! My last ice cream was also May 9 – in celebration of Mother’s Day with the kids… mmmm… Coldstone!

What’s been interesting to observe this past week is that I continue to feel congested, and it seems to be worse! The skin around my chin and jaw line has broken out, which usually doesn’t happen unless it’s my time of the month. I can only assume it’s just my body clearing up the dairy residue. I wonder how long it will last and how I’ll feel once I’m completely cleared up. Maybe my voice will change!

Both the Paleo and Anti-Inflammation diets recommend to stop eating dairy products as well as gluten.

Gluten-Free

Maple Bacon Bar

Oh noes! I grew up learning that bread, cereal, and grains are the foundation of the food pyramid and should be eaten at every meal. Hoo boy, this would be a little more challenging, but certainly doable. I’ve replaced my weekday morning oatmeal with a piece of grilled chicken and handful of baby carrots. No more sandwiches, which were great for on the go meals/snacks. No more pasta. Sigh. No more pastries. NO MORE VOODOO DOUGHNUTS!! Cries.

The last gluten product I ate was wheat berries in a salad on May 12. And you know what? I’ve been feeling really good this past week! Clearing my diet of dairy and gluten has allowed me to discover that when I start “losing it” – feeling very tired, getting a bad headache, being grumpy – I need to eat.

The Most Important Ingredient

Cutting food groups from one’s daily diet sounds simple enough, but it’s a lot harder than it sounds! Did you know the most important ingredient for any recipe is time? I sometimes wonder if giving myself an injection would be a decent trade off for finding time to prepare food. The direct exchange of time would be worth it. But the long term effects are not. In a way, I am thankful that MS has motivated me to finally quit dairy altogether, and encourage me to learn more about diet and nutrition. It’s good information that benefits anyone, not just people who are sick or living with disease. Actually, eating healthy prevents sickness and disease. But for some reason or other, such knowledge is kept under wraps. Whatever would happen to the dairy or grain industries if our doctors practiced preventative care and taught their patients proper nutrition?

Something to think about.

Anyhow, I was unexpectedly presented with the fact that my lifestyle change isn’t just about what I eat. I have to change the way I spend my time! That’s more of a challenge for me, but one I am slowly overcoming. It will take time to make time.

Coffee/Caffeine

I’ve already knocked the habits of adding cocoa (contained dairy) to my coffee and drinking it after 4:00 in the afternoon. For sweetener, I now use turbinado sugar. I have also considerably reduced my consumption of coffee in the afternoon (around 3:00/4:00). It’s between the hours of 3 and 4 right now and I have to fight the urge to go get a coffee. I’m beginning to feel tired and my mind starts slowing down about now.

I should eat!

*runs off for a snack*

Related Articles

• Next-Generation Paleo Diet Signals Change to Kitchens World-Wide (prweb.com)
• Gluten-Free Has Gone Big Time, but Why So Popular? (abcnews.go.com)
• Complete Idiot’s Guide for Gluten Free Cooking in Bookstores on November 2, 2010 (prweb.com)

Does Knowing I Have MS Cause Stress?

I have so many questions about MS. Sometimes I’ll think of one, but will have forgotten what it was within a few hours.

The one that’s prominent in my mind now is if knowing that I have MS causes stress. So instead of waiting to forget the question, I’ll hash it out here.

For me, I think the answer is yes. Being diagnosed with something adds a whole ‘nother layer to life. Every interaction with every single person is tainted with this knowledge, whether I have told them or not.

• When I can’t think of words when speaking with people, do they walk away wondering what the heck is wrong with that person?
• When I decline invitation after invitation because I know I’ll be too tired, do they internalize it and begin to suspect I don’t like them?
• When I say I’ll do something but keep forgetting, will they assume I don’t care?
• Do I tell people I don’t really want to tell just so they know something is wrong with me, that I do like them, and I care? I don’t think so.
• Am I unecessarily thinking about how others will be affected? Probably.
• Am I creating more stress for my self, when I should be reducing it as much as possible? Definitely.

Perhaps, and hopefully, this is a newb phase. I’ll either eventually get over worrying about others, or come up with a way to handle these ridiculous stress-inducing thoughts.

I’ve never been much of a stress ball and I certainly don’t want to be when I have to deal with MS each and every day. But this added layer has so many facets; health care/insurance, doctors, treatments, disclosure, job security. None of these things were a part of my life before I was diagnosed. My thoughts, worries, and concerns were primarily all about my family. Specifically our two high schoolers, one who will be graduating next year. This added layer of being diagnosed with a disease is really quite heavy!

A heavy circle.

Diagnosed with MS –> Stress about it –> Symptoms worsen or relapse–> Stress about that –> Etc., etc., around and around we go.

I’ve really got to get a handle on this as it’s doing nobody, especially me, any good!