Tag Archives: defeated

EM

I CHOOSE

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My body has spent the last 2 decades trying to break me. Every day it takes something else away. I didn’t think there was much left to take away. I was wrong.

My job is to stay alive until the medicine & research catch up.

I put in a lot of effort to live. I know that sounds foreign to anyone healthy, but it’s true. Every day with a chronic illness is spent staying alive. My body throws one obstacle after another in my path. In November, I learned that it will take multiple procedures to save my teeth & jaw. It’s been difficult to process this & gather the strength to face it head-on. Then Covid hit me like the sky was falling. I was so sick and my first oral surgery had to be canceled.

At the same time, my meds & treatments caught up to me & I started losing my hair. Within a very short time, we had to cut it, & eventually shave it completely. I know it’ll grow back, but damn, enough is enough. It’s not vanity that leads someone to the breaking point when they lose their hair. It’s another choice stolen, by illness. It may seem silly but yes, losing the ability to choose your hairstyle is a big deal. I was still very sick at this point, with Covid & we ended up postponing our holiday festivities. Losing my hair at the same time was extra cruel. It was one more kick in the gut from an ugly disease. 

A few days later, my quarantine ended and I went for my routine labs. My rheumatologist called later in the day, to tell me that I needed to stop one of my medications immediately. I was on the verge of liver failure. What are the chances that out of all my medications & treatments, I’d need to stop the one medication that made a huge difference in my quality of life? I reluctantly stopped it after speaking to my doctor. In just a few weeks, I’ve noticed negative changes in my body. I’m hoping my labs improve and I can resume the medication soon. 

So here I am my teeth & jaw at risk, with a bald head, and on the verge of liver failure, still trying to schedule time with family for Christmas. Yet, I am still not letting my physical problems terrorize my peace. I was feeling pretty positive earlier this week when I went for my normal urology tests and follow-up. Easy peasy routine visit. I should’ve known better. If you follow my blog you know that my urologist has wanted to put in a permanent catheter port for my bladder. I fought it as long as I could. Last year I agreed to do it, but I never scheduled the surgery. Now I have no choice it has to be done soon. I will have my mic-key port in my stomach & now I’ll have a catheter port in my bladder. Having one of these ports is difficult, but two ports on top of everything else is overwhelming.

I’m not sure how anyone else would handle all of this, but it pisses me off. I refuse to give in to my body. Unfortunately, my body continues to fight back. One would think this would break me, but they’d be wrong. I get frustrated and angry, then I fight even harder. I refuse to feel defeated. I get one damn life, this is it, I have to live with what I’ve been given! When you’re living with an incurable disease your only goal is to stop progression & maintain your quality of life. Just because your disease can’t be cured doesn’t mean you can’t live a full life. I focus on the things I love, the joy in the world & the positive possibilities of what the future might bring. I want a long happy life just like everyone else. None of us know when death will take us. That is a fact we all live with until our last breath.

I’m nothing special. I don’t do all these things because I’m strong or courageous. I do these things because I HAVE NO CHOICE. I do them or I die. I’m not alone in this lifestyle. It is with mixed emotions I watch several people close to me go through similar trials. It’s heartbreaking to know they’re suffering, but there’s something comforting in knowing I’m not alone. Someone else gets “it”. 

If you’re in a health battle my advice is to build your team, your circle, your tribe whatever you choose to call it, a strong support system is imperative. I’m so grateful to have family, friends & a medical team who are there working side by side with me. They carry me when I haven’t the energy, they push me when I’m unsure I can give anymore, & they let me be when I need time to process all of it, they are never out of reach. My tribe doesn’t judge me, I can laugh or cry and they’ll be there. They aren’t afraid to give me a kick in the ass when I need a reality check or if my pity party has gone on too long. 

I know my body will continue to fight me with every minute of my life. It better be prepared because I do not back down, I do not give up & no matter how many battles I lose, I will continue to fight. I will fight for every minute I can get. I’m always saying, I’m going to live to be 124yo. Stay tuned to see how close I get 😉

Despite it all, I refuse to bow out, give in, or become miserable. As my good friend TC says, “I choose awesome!”

I choose to be happy. I choose to survive.

I choose!
EM

JUST DON’T

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It’s that moment in a social situation when things get awkward. When the person you’re talking to starts squirming & fumbling for words. They are struggling to keep the conversation going. That moment when people are at a loss for words. I realize my illness, my pain, my wheelchair & dozens of other chronic illness-related issues, I live with make “them” uncomfortable. If I’m being honest, saying the wrong thing happens a lot.

These are innocent, benign comments from people with no malicious intent. Many times they think it’s funny and yet they’re completely serious. Sometimes I can shrug it off or laugh it off. Other times, my bitch switch is flipped and it’s on. I’m ready to completely obliterate someone in anger and frustration. Faster than you would think, anger turns to frustration, and frustration turns to pain. Before you know it, I’m launching headfirst into the abyss that leads me down the dark road to depression.

“You’re so lucky you don’t have to work.”

“I wish I could stay home all day, like you.”

When you want to say it, just don’t.

I hear this often. Each time my mind’s eye suddenly sees my day in what it perceives, they think I do all day. There I am on a lavish sofa, the sun gleaming through the windows, making me appear like a starlet under the glow of the spotlight. I have snacks to the left of me, a controller to my right, and I’m snug in the middle with… Netflix. My dogs are at the table playing poker with their friends. My house is a magical place where dirt evaporates and items walk themselves back to where they belong. Once in a while, I glance up from the TV long enough to see my dishes take a bath and dry themselves with my self-cleaning dishcloths. All I do is think about dinner and bam! There it is, ready to serve itself when the time is right. The washing machine collects dirty laundry and bedding, proceeds to wash, dry, put it away, and make my bed. I’m like 5 episodes into my binge-watching by now. This fantasy vision is short-lived, and my brain brings me back to reality.

What they don’t think about is the fact that you can’t work because you can’t function. Your day is consumed with effort through pain, fatigue, and brain fog. There are meds to take, scripts to fill, doctor’s appointments, organizing all of this, and dozens of other equally not-fun medically related things that need to be done. They have not had to consider the implications of being unable to work for an extended period. How do you pay for your bills and healthcare, the isolation, your lack of relevancy in the world, and a multitude of other equally reasonable questions that rattle in your brain, echoing throughout your life?

I don’t work in a regular, scheduled, leave-my-home capacity because I’m unable to. I have physical limitations. I would give anything to be healthy enough to go back to work. I’m not on vacation.

The truth is, when you’re chronically ill, you spend most days just trying to stay alive. Prioritizing what has to get done & figuring out which filth you can live with for today. Because it’s not all getting cleaned. By the time most people arrive at work, your body has already begun to retaliate, to get you to retreat to your bed.

A lesson I’ve learned the hard way is that when someone living with a debilitating chronic illness shares their time with me, I must be very important to them. I know what sacrifices were made for them to give me space in their lives. Don’t depreciate their value. Appreciate every minute they give to you.