Tag Archives: isolation

EM

SUNRISES AND NEW BEGINNINGS

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I’m fortunate to have an incredible support system, but in my darkest moments, I find myself alone. No one else can live in this body with me. Throughout the night, I’m here by myself, surrounded by darkness and pain. I’m sick, and I have to clean up my own vomit. It’s an unsettling reminder of the loneliness I battle despite the support around me.

Today was a challenging day, or rather, yesterday was. I have not slept, and time seems to be merging into a blur. It’s as if I’ve stepped into the Twilight Zone, where time doesn’t matter. However, reality hits, and I know I have to get up, get ready, and drive a teenager to field hockey practice in just two hours. So, yes, time indeed matters.

Despite the obstacles my body is putting in my path, I need to get on with my day and face it with a smile. Adding others to my misery only adds to the situation. I am happiest and more content when those who support me are living their best lives. I watch them view me through rose-tinted lenses, a view I’ve painted by pretending I’m okay. Those living with a chronic illness become skilled performers, some of the best actors and actresses you’ll ever meet. It’s a shame the Academy doesn’t give Spoonie Awards!

Yesterday was a day spent in intense pain. I managed to get up, take my medication, administer my injection, and take my granddaughter to get her ears pierced. I had to stop several times on the way home, the abdominal pain was merciless and unbearable. I contemplated going to the hospital, knowing full well, this was another blockage. Yet the thought of another exhausting and humiliating medical experience leaves me less than inclined to go. So, I suffer through the torment alone.

The several stops I made during my thirty-minute ride home, seemed futile. The Scleroderma dragon had awakened, wreaking havoc on my GI track’s ability to function. By now, it’s clear it’s another blockage. But did I go to the hospital? No, I did not. The thought of compounding my pain, stress, and overall agony by placing myself in a position to be judged by medical personnel who often treat me like a drug seeker, or time waster deterred me.

Then, having them humiliate me by being completely ignorant about it, like they’re teaching me a lesson or something.

“I’ve had far to many negative patient experiences to just, “go to the er”.

Advocating for myself isn’t new to me, but it’s an exhausting endeavor. The energy it takes to request they talk to my doctor or read through my chart before reentering my room is beyond me. Eventually, when they decide to heed my request, their demeanor shifts. Suddenly skepticism is replaced by compassion and belief. Now I’m declining multiple pain medications they initially assumed I was seeking. The irony is painful.

I shouldn’t have to endure humiliation before I’m treated humanely. So no, I did not go to the hospital. I returned home to suffer.

Within an hour of getting home, I began vomiting. Thankfully, my GI track decided to tediously do its job, and the pain did ease somewhat. The rest of the day, I continued to vomit and managed to navigate my sluggish intestines. Unfortunately, the vomiting triggered my reflux, and the dull headache from the Orencia injection kicked in around the same time. It was officially a full-on flare-up in this stubborn body.

Still, I did take my granddaughter for her piercing and her smiles added light to a dark day. My husband is on a camping trip, so I had to feed the animals and complete a few other necessary chores around the homestead. I even managed to get some online work done. Late evening rolled in, and I chatted with a group of friends online and cracked jokes. I don’t think anyone had an inkling of where I was physically or emotionally. Which I’m fine with because it gave me an escape from my current reality.

I’m writing this at 5 a.m. on Tuesday, as I start to see the light break through the night. I have come to the realization that this illness has taken something else from me, the joy and beauty in watching the sunrise. Because for me, sunrise means I haven’t slept again, the night is over, and people and animals are counting on me to do what I do. I fight, and I live my best life as painful, lonely, and difficult as it is sometimes. Because I know I only get this one life, and I want my legacy to be the joy I had for family, friends, and life. I absolutely do not want it to be, “She was always sick”.

“I’m doing everything in my power to be the person I want them to remember.”

One day this week, I’m going to plan a day to intentionally experience a sunrise. I want to truly absorb the beauty, and marvel at the miracle of life and new beginnings. I am tired of this disease constantly robbing me of experiences, I refuse to let it take another thing without putting up a fierce fight!

Huge shoutout to all who suffer in the darkness. Battle on, my fellow badass warriors.

I felt inspired…there you go JP, a Haiku.
EM

WE ARE THE DREAMERS

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I remember the exact moment I realized I had matured into a responsible adult. It was the day something didn’t go the way I wanted it to and instead of saying, “why is this happening to me”, I thought, “what did I do to create this outcome”. Somehow, life became easier after this revelation!

Unfortunately, the biggest obstacle in my life I did not create and I can not fix. Scleroderma is the beast I can not outsmart or outrun. It’s there, it’ll always be there. Every once in a while, I just want to curl up in a ball and shut out the entire world. But then I get discouraged and angry that I’m wasting precious time. The older I get, the more I realize how every minute matters. I don’t want to curl up in a ball, close my eyes and wake up having missed years of my life.

The lesson I’ve learned from being chronically ill is that everything matters. My lust for normalcy is insatiable. I want to get up, shower, drink coffee, whine about going to work, drive to work while bitching about traffic, survive my day to come home, make dinner and whine about doing it all again tomorrow. But my reality leaves no time for normal things.

On top of the desire to find balance in a world made for the healthy, I also want to do everything, see everything, meet everyone, and I want to experience all of the goodness in the world. Again, my reality leaves little time for all of these things. I can not tell you how many people have told me to “just do it”, go on that trip, and do all the things my heart is set on, while I still can. But I’m here to tell you that not everyone has the financial means or the health to be that person on TikTok traveling the world crossing things off their bucket list. I’m not hating, I say do all the things if you have the means. It’s just not possible for a majority of the disabled community. Whether it be a physical or mental disability, we live day by day with constantly changing medical needs and paycheck to paycheck trying to pay for those needs. We barely have time to write a bucket list, never-mind live it!

The other side of this is the people who, with negative intentions, have told me to shrink my dreams, to accept I’ll never have a normal life and move on, to adjust my life plans, and to just give in to my new reality. I’ve even had people tell me to just stop fighting the inevitable. What the…This one is probably the most painful and infuriating. When someone says this, I hear, “You’re inconveniencing my life and I need you to just be a good little patient”.

If you get nothing else from this blog, please read this and burn it in your brain. When we dream it’s with some semblance that these things are possible. Hope gets us through our darkest days. It drives us to push & never give up. Possibilities, goals, small triumphs, and even the hard work it takes to see a dream come true, are all burned as fuel to carry on. We savor the thought that the pain may end, that tomorrow will be better, that a cure may be found, and that our dreams will come true. Please don’t take that from us.

Yes, having a permanent and incurable illness means you will have to learn to navigate all the changes and hindrances that come with the diagnosis. But it does not leave a person less intelligent, damaged, incapable, irrelevant, unable to make their own choices, less worthy of friendship or love, and they, sure as hell, are not weak. An illness doesn’t make someone less of a friend. It doesn’t make them less fun or leave them not needing fun & excitement in their life. It doesn’t make them a burden, and it is not a free pass to steal their passions, hopes, and dreams.

I will not climb into my bed and be a good little patient. Sorry if this inconveniences some people & makes “their” life more difficult. But we all have the choice to be in someone’s life or not and love should be unconditional. If you see me as a burden, find a better patient, it’s not me. Unless you have a degree and can put Dr. before your name, I am not your patient. Do not cast shade on my hope. It would be better if you just walked away. It would be your loss. Because I am a fierce & loyal friend and you will never find a more welcoming & loving group than my circle.

Lucky for me, I’m a stubborn bitch who loves learning, life & people. I will not cower, I will not succumb, I will not have my life stolen by Scleroderma. Even on a bad day, I will accomplish something. Sometimes it’s a huge thing & sometimes it’s small. But to me it’s everything. I’ll continue to visit loved ones, make people smile, create, talk, study, practice, help others, make new friends, dream, hope, love, laugh, and fight until I take my last breath. I will not let the lack of money, resources, or bad health keep me from dreaming about doing all the things I want to do in this world. Will I do it all? Probably not. Will I die trying? Absolutely! 

Here’s to the warriors and all who know your worth and willingly step out into the world and share your journey. Keep hoping, fighting, surviving, and thriving, for we are the dreamers & we will not let anyone take that from us.