Tag Archives: ankylosing spodylitis

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.

I Am Not My Disease

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I Am Not My Disease

I have Ankylosing Spondylitis (AS), but I am not my disease. Please do not treat me different, I am still am irregular girl.

It’s alright, I can tell you want to ask, I get it quite often. Go ahead and get nosy, I do not mind. Your questions means you care. Let’s take a walk, its uncomfortable for me to remain in one position to long.

Yes, I have arthritis. I was diagnosed with an inflammatory auto immune disease called Ankylosing Spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss) a year ago on my 30th birthday.

Yes, I am young. No, you can not always see it but I can always feel it. I use a cane at times to keep my balance when my legs don’t cooperate. Yes, I do look healthy, why thank you kindly. I altered my entire wardrobe to accommodate my daily discomfort. This is my favorite skirt, it hides my swollen legs, and it makes me feel pretty.

Every move I make is taken with gentle care and excessive planning. I’m not obsessive compulsive, See The Spoon Theory. Ok, and I might be a little OC, but I only use my powers for good. I am not unreliable, but my body is. No, it is not contagious. Yes, You can touch me, but do it gently because I am fragile. I bruise easily and I can feel the vibrations of your voice on my skin. Sound waves ripple across my nerve endings constantly but you wouldn’t know anymore, I’ve finally stopped flinching every time I hear a new noise.

Pardon, I need to have a seat, my knees and feet are beginning to swell and stiffen from walking. Please, sit with me, and do not treat me any differently, I beg of you. I am still the same vivacious woman you met 10min ago, I just can’t walk anymore right now. Yes it hurts. All the time. Yes, my smile is genuine, is yours? I am happy. Life is beautiful why wouldn’t I be? You see, I have AS, but I am not my disease.

My joints ache, my bones get stuck, my nerve endings are fried. I enjoy long stretches, slow walks, warm blankets, hot bubble baths, and I’m a sucker for a good massage. No, it is not curable. Yes, it is manageable. No, I do not use the prescriptions that line my medicine cabinet. Do you know where I can dispose of them safely? Yes, I use herbal powders, holistic remedies, progressive muscle and autogenic relaxation techniques. My mind is stronger than my body.

I took a year off of life. I didn’t give up, simply took a long rest. I over came a great number of hurdles with very little support. No I am not bitter. I do not keep score, but I can not forget. I do not hold grudges, but I wish you had been there, I could have really used your help. Pardon, I need to stand a bit, my hips are swelling from sitting. No, don’t get up. And don’t treat me differently. Let me finish my story while I still have the energy. Let’s speed this up a bit.

I took the term fresh start to the extreme. I said goodbye to everything I knew and everyone I loved. I quit my job and moved to an island with my doctor’s blessing. I changed my way of thinking first, my surroundings second, and my diet third. I’m not too proud to admit it, you were right, it was food and stress (well yes, and an auto immune disease causing severe inflammation and bone fusion, but, you know, mostly food and stress). With every subtle change that I made I felt lighter, stronger, happier.

I am 31 years old now. I recreated life as i knew it. I live a simplistic lifestyle that revolves around taking care of my body and mind first. I made a home and a career for myself on the island and visit the Mainland for the ones I love and left behind. My body is weary but my heart is happy. Our minds are incredibly powerful. Every single aspect in our lives is a determining factor of our health. I am living proof. My cane is getting dusty. Yes, I am still in pain and I do not sleep the greatest at night but my days are full. I do to much to make up for lost time to come because I do not know how this disease will progress through the years. My body has taught me more about life in these past two years than any schooling or role model that influenced me. I am constantly craving more knowledge from my growing community of compassionate souls. How do You cope with what ails you? What tricks do you use to trick your mind and calm your inner soul? I would love to know….