Monday, January 8, 2018

January 2016.

One of the biggest goals I've heard for 2018? 
Being healthy. 

Hey, plants matter too ok, not just oatmeal.

For everyone, being healthy means something different. 
2 years ago this month, it definitely changed in meaning to me. 

Since I started this blog, I knew I would eventually write about what happened to me two years ago this week. I didn't necessarily know it would be this soon.
However, it seems fitting that it be now, because it's the two year anniversary.

For 2018, I want to write a lot of posts to help other people who might be going through the same thing. In my first post of the year, I talked about being genuine and how finding myself changed me. I have been bothered lately by the amount of people making fun of people who made it a goal this year to get in shape, go to the gym, or eat healthy. 
Mocking people is not good, because it brings them down. 
Soon they may give up on their new lifestyle, because no one believed in them. Wouldn't that be sad?

Everyone is different. 

Mind wellness matters as well.
Currently reading this amazing book by Deepak Chopra. 

I got a lot of pushback when I cut out dairy from my life two years ago. 

I had just arrived back from NYC from the weekend with my mom. I had noticed my eyes were heavy, but blamed it on the cold and tiredness. 
We took the train back and I remember driving home thinking wow, I'm so tired I can barely keep them open!

However, the next day, after ample rest, they did not improve. 

I went back to work, I struggled to get anything done because the computer seemed to make it worse. I struggled to drive back and forth to work each day. I mentioned to a few people this, they just thought it was a tick, or just tiredness. But eventually, I couldn't open them enough to drive. I think the worst part was being home trying to relax, and having to literally hold my eyes open to watch tv. That is how bad it became. 

I booked an appointment with a general practitioner because I really had zero idea what was happening.  As we all know, the answer would be cancer if I looked it up on WebMD, so I didn't even go there. The doctor had no clue either, but said maybe it would be a good idea to see a neurologist. 
Great, a starting point. 

10 minutes later, not great, the soonest I could be seen would be April, and we called an entire list. 
Based on the fact that I was terrified and could barely see, this was not ideal. 

As fate would have it, we had a family friend with ties to a local hospital. 
I was able to get in the next day. 

We went in, they immediately determined they were pretty sure what it was, which was exciting, well, I hoped. Depended on how bad whatever it is, was. 
But, they wanted to do some tests to be sure. One test, was basically a taser to the neck. No joke, mom had to hold me down, and they "tased" me to see how my muscles contracted. My mom didn't handle this well, and I think they were coerced (not gently) by her to end the test early. 
They still got their results. 
The other test, equally awful, was a bag of ice (nothing around it) straight to the face, to see what my eyes did when it was removed. Straight to the face, for like 10 minutes. Yep. Excruciating. 
The tests were 100% necessary and routine, but... that didn't make it better. 

The doctor said, we've got it. You have Myasthenia Gravis
"What's that?" I said. 
As I am sure most of you reading this are as well. 

Myasthenia Gravis is a very rare auto-immune disease. 
It affects your muscles, and can make them not respond appropriately, hence my eye muscles not opening. It can also spread to the rest of your body, but in some people it stays in the eyes. There's some research that says after two years if it hasn't left the eyes, it won't. So I'm hoping that is correct. For now, it has never left my eyes. Some people also get a small benign tumor in the thymus gland, I had the MRI, but do not have this. If it gets bad enough, it can affect the muscles that help you breathe, this part scared me the most. 

Now that I had an answer I was grateful, but nervous. They put me on a medication, that I took three times daily. I returned home hopeful that the medication would work, although I knew in a lot of cases it didn't always. Because the disease is so rare, even the knowledge the doctors have is somewhat limited. Much of the treatment is trial and error. 

This was a very long road. I threw up every single day for over a month. We tried to tweak the medication doses, eat with meds, everything I could think of but nothing was working. I lost 15 lbs just from being sick in about 3 weeks. I couldn't do anything, I took off an entire month from work. I felt worthless (for those who don't know this about me, I used to define myself by my work). 
I looked into long term disability, I didn't know what any of this would mean. 

But eventually, I got sick of being sick. 

So, I took to the computer. After a lot of reading I found something that said the medication I was taking, did not interact well with dairy and fried foods (and sugar did not bode well either).

Well, well well. I live for cheese. I eat fried everything. Mozzarella sticks, best of both worlds right there. Cheez-its? Heck I lived on those, cause I kept getting sick. If there was any truth to this, it made sense. So in an experiment one day I decided to cut out dairy, sugar and fried foods.

That was the day that I stopped being sick. 

I started to research and research foods that were good for me to eat. I bought books, I looked up different websites, I followed bloggers, doctors, and Pinterest'd recipes with no dairy until my heart was content. 

I love food, and now, food loves me too. 

Things I discovered:
For me, there hasn't been a great real substitute for cheese. So either I eat it, or I don't. However I am trying the newest Vegan Shaker Parm Cheese by GoVeggie. So I'll let you know. 
+I prefer cashew milk in my coffee. 
+Almond milk in my cereal. 
+Coconut milk for everything else.
It is AMAZING what can be mixed to taste like actual cookie dough, and really it's a bunch of nuts and dates (talking about food, not tinder). CRAZY! 
I have come to accept and love earth balance butter. Even more than actual butter.
I live by olive oil and coconut oil. 
Cutting out dairy makes you lose weight and acne, FAST. 
There are name brands that have dairy free brownie mix. 
I suddenly felt great and had way more energy.
Also, ginger root gives you SO MUCH ENERGY. 

So finally, what happened....

Well, I cured myself of all symptoms in less than 1 year, approximately 10  months to be exact. 

The earliest the doctors had ever seen was just over a year, but they said USUALLY it takes 2 years. In fact, within 6 months I told them I thought I was cured (from symptoms). They laughed, and said to come back closer to a year. At 10 months they said ok, maybe we believe you but wait to go off meds completely until the 12 month mark. They also were very surprised and asked me how I did it. 
I told them, they were very interested. I was pretty proud of myself. 
I may have cheated a little on the timeline,  because I wanted to be off of meds. 
But I was right! 
I've been off meds completely for over a year now. Last year, since I was off meds, I lost my way a bit, and got back into dairy. It left me lethargic and I gained weight. So, the first day of the new year this year, I cut it out again. I DO NOT want these symptoms back ever again. 

I've already lost pounds in just a few days, and have increased energy and clarity. It's not about the weight though, because weight comes and goes. It is about being healthy. 

Kombucha - my current love.

2018 - I've also gotten more into & am working on:
+Meditation
+Yoga
+Letting go of anything that formerly bothered me
+Breathing before answering messages
+Thinking before I speak or type
+Being more kind and understanding
+Keeping an open mind at all times

I feel that all of these things will help me maintain the health and wellness necessary to keep these symptoms away forever. 

Thanks for reading this super personal post. I hope that it helps you in some way. 
I want to point off that I was fortunate and I do recognize that. There are those who are in this disease way more aggressively than I am, and to you I say please let me know how I can help you in any way. We can fight this fight, and I feel for you. Don't lose hope!

Have a great week everyone,
-SBR


























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