5 Things I’ve Learned Since Being Diagnosed with an AutoImmune Disease

Recent hike to send some good prayers off into the universe.

Recent hike to send some good prayers off into the universe.

This weekend marks the 2-year anniversary of leaving the hospital in Floyd, VA with my second diagnosis of Ulcerative Colitis (UC).  Two years ago I was weak.  I was starved of nutrients (amongst other things), heavily medicated and a good 1700 miles away from a home that was boxed up in a storage unit.  The road ahead of me seemed bleak.  My attitude and demeanor was dull and relatively lifeless.  I was frail and sensitive.  I wasn’t sure what would happen to my body or what my future looked like.  The memories are hazy at best. Probably because I wanted them to be.

The Mayo Clinic says this about my dis-ease:

“Ulcerative colitis (UL-sur-uh-tiv koe-LIE-tis) is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine (colon) and rectum. Symptoms usually develop over time, rather than suddenly.

Ulcerative colitis can be debilitating and sometimes can lead to life-threatening complications. While it has no known cure, treatment can greatly reduce signs and symptoms of the disease and even bring about long-term remission.”

Not exactly rainbows and unicorns… but it’s also not the worst diagnosis one could receive.  It does say something about treatment and long-term remission!?  Inflammatory Bowel Disease, or IBD is an immune system disorder, or autoimmune disease, and WebMD has this to say about Autoimmunity:

“Immune system disorders cause abnormally low activity or over activity of the immune system. In cases of immune system over activity, the body attacks and damages its own tissues (autoimmune diseases). Immune deficiency diseases decrease the body’s ability to fight invaders, causing vulnerability to infections.

In response to an unknown trigger, the immune system may begin producing antibodies that instead of fighting infections, attack the body’s own tissues. Treatment for autoimmune diseases generally focuses on reducing immune system activity.”

In addition to IBD, some other examples of Autoimmunity include Rheumatoid Arthritis, Lupus, Multiple Sclerosis (MS), Type I Diabetes, Guillian-Barre syndrome, Psoriasis, Graves disease, Hashimotos Thyroiditis, Myasthenia gravis, and Vasculitis.

Wow, I don’t know about you, but just writing all of this has practically lost me.  Don’t worry, I’m not going to get into specifics of diseases and all scientific on you…. What I am doing by providing these definitions and titles is showing you that this is a real thing – Autoimmunity.  The American Autoimmune Association goes on to explain that Autoimmunity is actually affecting more Americans than Cancer and Heart Disease, yet the funding for research and cures is less than a quarter than that of those big, widely known diseases plaguing our country.  Again, I am not trying to get super scientific on you.  I know a lot of what I say has meaning without the statistics, but I also know that some people out there enjoy statistical learning.  I hope I’ve provided some good links for your learning pleasure.

What I am here to talk about today is some of what I’ve learned from living these last 2 years fully aware of my dis-ease.  Notice that I spell it hyphenated instead of as a single word.  This is something I’ve picked up since choosing to heal myself holistically and not with traditional medication.  I am out of ease – dis-ease.  My body is not preforming optimally and I have work to do.  I am NOT defined by this diagnosis.  I still have my colon and my entire digestive tract (thankfully).  I am not full of disease, I am out of whack… for now.

I’d also like to point out a part of those definitions that has never settled very well in my mind:  “Treatment for autoimmune diseases generally focuses on reducing immune system activity.”  This amazes me.  It baffled me the first time I was diagnosed and I ran away from treatment telling myself  “I have a strong immune system… it has never failed me.  I never get ‘sick’ because my immune system is so strong… why would I suppress it from doing it’s job?  Obviously there is something else going on that I need to discover – the symptoms (uncomfortable swelling & diarrhea) are not my dis-ease, but that’s what traditional treatment targets.  There is something deeper irritating my strong immune system.  I do not want to block my immune system from doing what it is designed to do.”

I still feel this way.  The first time I was diagnosed I was irresponsible and simply ran away.  The diagnosis caught up with me a couple of years later and this time it shook me awake and landed me in the hospital with a surgeon on call to remove my colon if the swelling didn’t subside.  I could not run from this any longer, it was time to act. The following is just a few of the important things I have learned over the last 2 years of healing holistically.  I am proud of the choices I made to not follow the traditional western medicine routine of inhibiting my immune system.  If ever you want to talk deeper about these things, please don’t hesitate to reach out.

1.  I am not defined by my diagnosis.  I have been diagnosed – this is all.  The auto-immunity that lives in my body does not direct my life path or control me.  I do not have it tattooed on my forehead.  Only those who know my history will know what I have suffered from.  It does not define me as a person.

This one was big to realize.  If I choose to tell you my story you will notice I will say “I’ve been diagnosed with UC”, not “I have UC.”  I have a loving boyfriend.  I have a beautiful house and connected community.  I have lots of house plants.  I have a full refrigerator.  I have skis and bikes.  I have sandals and boots.  I have a car.  I have friends.  I have a nice smile.  I have a good job.  I have a supporting family. These are the things I focus on and allow to define me.  Not this dis-ease.

2.  My body is designed to heal.  So is yours!  What amazing vessels we get to walk this earth inhabiting!  We don’t even know all of the functioning systems of our human bodies.  When I was discussing treatment options with the GI doctor in the hospital he told me that at the time we (the medical field generically) knew less about the human digestive system than we do about deep space and the bottom of the ocean.  That, my friends, is alarming.  We walk around in these bodies for lifetimes and we have neglected to discover what is actually happening inside of us. (Don’t get me wrong here, I know we have produced doctors amongst doctors that know lots of anatomy, physiology, psychology and the likes…. but I’m talking about the interrelatedness of our systems – how it all works together and what exactly exists in regards to biotics – which happen to outnumber our cells) Granted, the research is being done now…. at an alarming rate and coming from reliable and questionable resources.  We are quickly discovering that there is a lot going on in there and most importantly that it is very different from person to person.  Woah…. what a concept… you mean I am different than you?  Who’da thunk it……?

Our bodies preform miraculous functions every moment of every day.  Our hearts pump blood where it is needed.  We breath air into our lungs without thinking.  Our brains remember and develop ideas.  Our organs collect and flush toxins.  We digest food and spread nutrients throughout the body without our knowledge.  We heal injuries – one can even see this happening with a small cut or bruise.  This is amazing stuff, folks!  We should appreciate and revel at the wondrous things our bodies do for us every single moment of every single day.  With focus and determination, along with understanding of our individual needs, we can heal from anything.  I believe this with my entire being and accredit this belief to my current health.

3.  I have support.  As hopeless as I felt when I was admitted to the hospital and starved for 4 days, I still knew I would make it.  The people I was with when I got sick came to visit me on their work breaks.  They picked me up when I was discharged and made sure I was taken care of until my flight back home.  My parents supported me by giving me a quiet place to rest and regain the strength I needed to begin thinking and moving again.  I had friends, siblings and lovers to support my healing, take me to lunch, shopping, or just come sit with me.  I am forever grateful to all of these people and I have probably never thanked them the way they deserve.

I still have support.  My family supports me by loving me unconditionally.  My boyfriend supports me in the home by cooking with me, loving me, and encouraging me to explore opportunities to help others.  My friends and my community support me by being interested in how I’ve healed.  I’ve gone back to school and my fellow students and teachers support me.  I’ve hired a coach who has supported me throughout and I owe my healthy choices to.  I have support in the form of emails and blogs that I follow, my facebook page even supports me.  Most importantly, I have learned how to support myself.  I now know that rest, hydration and nutrition play a big part in how I feel.  I know that quiet time is just as important as social outings.  Exercise doesn’t need to be exhausting, but moving my body daily is critical.  Using my voice and having confidence in my decisions gives me the support I need to continue to heal.

4.  All food is NOT created equal.  This is a touchy subject to many.  I won’t delve too deeply into it, but if you haven’t heard of the Food Babe or Food Matters TV or the Environmental Working Group yet you should probably check them out.  This is way beyond GMOs and Organic food, my friends.  This is the food we’ve been trusting and ingesting for over 30 years.  I personally feel like a victim of a scary science experiment that has been tested unknowingly on the population of our country.  The rates of dis-ease in our population is frightening and a major common denominator is FOOD.  Processed food (corn, wheat, soy and sugar) is not feeding the hungry parts of our world.  It is creating a tragedy of obesity and heart disease; polarizing economics and politics; debt and health care crisis; and strangling our planet – our home – with nauseous gases.  These are not the headlines of the next Monty Python play, this is reality.  We must do something about this, and quickly.

5.  Getting healthy is a lifestyle, not a destination.  It has been two years since I took my diagnosis seriously.  Am I healed?  Probably not.  Do I feel better than before?  About 200% more so!  Will I ever be able to remove the diagnosis from my medical chart?  Probably not.  Do I live every day thinking about how sick I am?  Hell no!  I may never be completely healed of this Autoimmune dis-ease, and I’m OK with that.  It’s like a tattoo… the one I got the day I turned 18 and is (fortunately) on my back and I never have to think about until someone asks me about it.  I live with it every day, but aside from some minor itching and annoying questions, it has very little to do with who I am and how I live my life.

I made a decision from that hospital bed 2 years ago that I was ready to shift my life in a healthy direction so I could continue to live fully.  This is not a “fad diet” or a “quick fix”.  I am not suppressing my immune system from functioning the way it needs to for a healthy, healing body to thrive.  I am learning to listen to my body – the one I have for this lifetime.  I am developing a relationship that very few people chose to give effort to – the one with me.  The road is a (hopefully) long one – as long as this body will be on this planet.  I’ve chosen to step onto this path without regard for where it ends.  I know that my body, mind and spirit is healthier while on the path.  I know that I may fall off occasionally, but that the path is always there and I will always be able to get back to it.  The destination is not the point – what’s the fun in getting somewhere when that’s the end?  It’s like finding yourself at the end of a good book only to wish there was more.  I am choosing to enjoy the road and not care too much about where it is ultimately taking me.  The adventure is the best part.

So here I am, alive and thriving, 2 years after being starved in a hospital bed in Virginia, alone and frightened.  I survived.  I’ve learned a lot along the way and I can’t even begin to imagine how much more there is to learn.  I wouldn’t trade my experiences for anything.  They collectively landed me right were I am – which is exactly where I am supposed to me.  I am in a healing phase of life, and everything I am doing is working perfectly.

Thanks for following me on this journey.  You are all part of my healing process, whether you know it – or me – or not.    I mentioned it before, but will say again that I love to talk about this with friends who might need support or just want to chat.  Comment below and let me know what your journey to health and happiness has taught you so far.  We’re all rotating around that big ball of fire on this rock together.  I find that things work better when we all work together.  I love to hear from you!

Sending Lots of Love to Your Health and Happiness!

Rather

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This entry was published on July 29, 2015 at 8:03 pm. It’s filed under accomplishments, adventure, autoimmunity, healing, health coaching, learning, support, ulcerative colitis and tagged , , , , , , , , , , , , , , . Bookmark the permalink. Follow any comments here with the RSS feed for this post.

2 thoughts on “5 Things I’ve Learned Since Being Diagnosed with an AutoImmune Disease

  1. Alex Wieczorek on said:

    Rather, you are one of the strongest people that I know. Your determination to heal yourself by simply living healthier is inspiring. I am trying to make changes in the products I buy, food I eat, and the general way I think about things I do to my body. It’s harder than I thought, but slowly I’m making small transformations. I always thought that “they” were looking out for us (Federal Drug Administration, food producers, the people that put in place regulations that are used to hopefully monitor what can be sold to consumers, etc…) but the scary part is that no one is doing that! You are right! We must take responsibility and do research ourselves. I’m so proud of you, and I’m glad you’ve received so much support on this journey. I know it’s not easy, and I admire the way you’ve taken control. Well done and I’m so glad you feel 200% better!!!!! Terrific blog! Hope to see you soon

    Like

  2. Brendon on said:

    I shared this with my husband, who has a similar, yet different struggle (SIBO). This is what he had to say:

    “knew less about the human digestive system than we do about deep space and the bottom of the ocean “… I wish this wasn’t true!

    Thanks for sharing! Sending love to you and Nate, too!

    Mary Beth

    Like

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