Tag Archives: auto immune disease

I once was lost….

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Somewhere along the way I lost myself and my purpose here. Not here on the planet in this life. I know exactly where I stand in the scheme of things. I know my purpose in the universe. Here, in my blog though, I got more wrapped up in sharing content that I thought would interest the people or boost my businesses instead of sharing thoughts that my heart needed to purge and the sort of things I wanted to share just because this is my sacred space and I CAN. I forgot why I had originally created this blog in the first place.

I designed this humble little blog with one simple purpose in mind. I wanted a page to help motivate young people with illnesses towards a lifestyle of  positivity and optimism regardless of how their bodies make them feel on the inside and look on the outside. I want to share my own story while strengthening and inspiring both myself and others also living with auto immune diseases. I created this to be a safe space for myself and others in similar situations. Regardless of our genetic makeup and universal design, this life is what we make of it. No matter how much pain and illness one lives with, how we react to our bodies and how we make other people feel towards our conditions is our personal power.

Four years ago, after 10years of doctors, surgeries and tests, misdiagnosis’s of cancer, MS, and Ulcerative Colitis, I was finally correctly diagnosed with Ankylosing Spondylitis and Narcolepsy with Cataplexy. After all the time spent in hospitals and doctors offices, I was barely 29 years old and living in daily misery completely consumed by the pains ripping through every nerve in my body and watching my physical state deteriorate faster than I could get to my next round of tests. I never admitted it verbally to anyone around me, but I lost all purpose for living. I saw absolutely no point in going on, but I never wanted anyone to know how dark my thoughts had spiraled because I had lost my own mother to suicide and I was all to aware of how actions such as that effected the people left behind. So I pushed on, not for myself, but for others, to show strength and inspire people, all while doling out fake smiles and secretly wanted to not be Me anymore. Somewhere along the way, I noticed I wasn’t faking anymore and I truly did feel an endless source of strength from within and I began inspiring my very own self.

I came from an upbringing that valued privacy, almost to the point of secrecy. I realized how secluded my mindset was keeping me from the rest of society but I didn’t know any other way to be but private with a lone wolf mentality. Out of loneliness and desperation for connection of any kind, I taught myself to be vulnerable. It took many years, but eventually I learned to trust and open up. I learned the power of sharing thoughts and feelings and situations with others and about how much more we can learn about our selves when we share our experiences. I shifted my mindset from a place of misery and wanting to give up on life, to a place where I now see so much love and light in all things surrounding me that I want to share the beauty with everyone that I can. In a way, I feel as though I was given a second chance at life. We are never given struggles that we can not handle, and everything truly does happen for a reason.

In the beginning stages of learning to live my “new life”, a life of acceptance, self compassion and simple, gentle living instead of stress, denial and being to hard on myself. I had found hope and inspiration from a few blogs that had been created by other young people living full successful lives with auto immune diseases. I did not want to compete or take anything from the other blogs, but I felt that I too had something unique to share with the masses. My positive outlook, humor and resilience throughout the hard and seemingly impossible times, was something that I wanted to share with people in hopes of inspiring and connecting. The selfish side of me also wanted a way to connect with other people who were living with similar diseases so that I didn’t feel so alone, odd, different and medically freakish.

I want to help shed light on what life with auto immune diseases is actually like for both those living with the diseases and for those loving ones with diseases. It might seem hard to believe, but it is just as difficult to live with auto immune diseases as it is to live near it and not fully understand it, if that makes sense. As I struggle with my own issues, I am also hyper aware of how difficult to understand and uncomfortable pain and emotions can make other people feel. Communication has been my saving grace throughout this process. Educating others so they have an understanding of what I deal with and don’t feel nervous around me, or scared that something will happen that they have to be responsible for my well being, has allowed me to feel comfortable leaving my house and be able to enjoy the company of others again.

You did not stumble upon this blog post for no reason. Everything has a design, this was meant to be. Thank you for taking a moment to be present here with me. I hope I can help shed light and be a source of hope and inspiration for others. Please feel free to leave comments or message me directly if you feel the desire to reach out and connect for any reason. I am here and I am happy to help.

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Dear Diary

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Dear Diary

I feel a little overwhelmed

Every little thing is frustrating me into a short violently angry manner that dissipates just as rapidly as it appears leaving me feeling like I am choking back tears.

I can’t keep up

I am exhausted

I would sacrifice a virgin goddess for a few days completely and entirely alone. Just a few, or possibly a couple if a few is asking for too many. Just me, and  my dog of course. No distractions. No phone. No Social Media. No one needing me for all the things for just a day.

Sólo veinticuatro horas por favor.

I am craving a Vow Of Silence with every ounce of my being, but my lifestyle very rarely allows for such a thing. I literally penciled “Vow of Silence” into ten potentially possible days of my calendar this month.

Running a non stop flow of Airbnb guests and being MamaBear to all my friends takes a lot out of an introvert. Anyone who knows me feels my passion though. I live to serve. Sharing my light and energy gives me strength. Every ounce of my exhaustion is worth it. I love the irony in that. I grumble and groan so infrequently. Complaining about anything in my fantastically beautiful life feels like a disrespect to myself and to the universe that has gifted me so greatly.

I am grateful. Blessed. Proud.

Proud of myself. Proud of my family. Proud of the beautiful humans that I care about. Proud of people I have never even met out there making small and great changes and impacts. So grateful to be connected to so much love. So honored to be a source of light and inspiration for so many people. So damn blessed to have my love, energy, and light returned to me in so many ways.

Yet I am entire body and soul type of exhausted.

So much pain. I can no longer hold back the tears. I feel as if my mind and body are in a hundred different places. I exerted too much physical energy this weekend and I am paying for it dearly. Plus its Shark Week and I am on high emotional alert. I made too many appointments and plans, lost my planner, forgot everything, and made extra plans that I very well might never make it to. I lost count of my spoons (Read The Spoon Theory).

I’m frantically trying to keep up with these days that just keep slipping past my butter fingers. My brain feels like a dam that has bursted and been repatched up at least two dozen times. Crackled and spackled. Backed up and yet squirting and spurting. I am looking at too many tomorrows for some odd reason instead of being present and self compassionate. I know better. I am worried about the things that I am forgetting and making up excuses for the things that I already know I will somehow miss.

I am not unreliable, but my body is. My physical limitations still frustrate me a times. And very very rarely, I still get embarrassed and want to hide my flare ups and sleep attacks. Those feelings burst into an anxiety of the belief that soon my time and availability will be greatly limited and then into disappointment at my lack of self compassion.

Slow down Cloud. Breathe. Cálmate Mamita.

Be Compassionate.

Be Present.

As my vision gets blurry my writing slows down a bit. Breathe. It’s ok to feel the feels Crystal says. The feels make you who you are. That thought alone calms my soul. It’s always ok to cry when you are you. And I am always me so I let it be and leak from the eyeballs freely.

Such an incredibly beautiful grab bag of mixed emotions jivin’ and vibin’ within me at the moment. Yin and Yang. The dark forever embracing the light creating entirety. I see it all for what it is and embrace the feels.

Let it in. Let it go.

With each breath I feel more. I hurt less.

I am imperfectly human.