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EM

WHEN “THURSDAY” IS “WEDNESDAY”

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Happy Friday friends! You know those days we all have when everything you try to do is an epic fail? My “Thursday” was one of those days!

My husband is enjoying a much needed camping vacation. I started “Thursday” off with completing some promotional work online. I was feeling accomplished after getting it done quickly, efficiently and early! I had nothing I had to do for the rest of the day until an interview at 8pm.

After completing my online work, I went to the refrigerator to grab a drink. The minute I opened the door, I immediately regretted it, the smell was overwhelming. I noticed the milk container lying on its side. When I reached for it, I realized the container was bloated, and couldn’t even stand upright. What had started as a container of whole milk had turned into curds & whey, and Little Miss Muffet was no where to be found!

RIP Frigidaire

I quickly cleared out the entire refrigerator and transferred my Orencia injections into a cooler with ice. I have no way of knowing how long they went without refrigeration. My anxiety grew as I called the pharmacy asking what to do. They told me they could send me replacements, but I would need to cover the cost upfront and wait to see if my insurance would reimburse me. Considering each shot costs $1,436, and I would need three replaced, that amounted to $4308. They were so cavalier about the situation. I got the impression they truly believed I had that kind of money just lying around. But let me refocus and get back to the rest of my chaotic “Thursday”!

Following that, the power suddenly went out and my attempts to reset it were not successful. I was beyond frustrated and I shifted my attention to tending to the animals instead. However, while collecting eggs, several chickens managed to escape their enclosure. Despite corralling most of them, their was one little devil that evaded me. As I approached it with the hope of sending it running back to the enclosure, I slipped and fell hard. I was able to catch myself with my outstretched hand, I felt pain immediately. I found myself in the duck pond, which is basically a mud bog, this time of year.

By this time I contemplated remaining there for the rest of the day. Eventually I managed to extract myself from the mud and hobbled back to the house with my cane. I wanted to get inside and quickly ice my hand and wrist. Then I had another moment of complete exasperation when I remembered the power is still out and I can’t even shower. So there I sat in self pity city, hurting & covered in mud for a good half-hour, until my phone rang and interrupted my pity party for one.

The call was from the social worker where my mom resides, they needed me come in to address some matters. I felt paralyzed. I was covered in mud, and feeling overwhelmed and doubting myself. I do not like these feelings and it flipped a switch in my brain. Just do it. With renewed badassery, I dragged my ass back outside. It took all the tenacity I could muster, but I managed to reset the power and get that mother clucking chicken back to the safety of it’s pen.

I did it.

I went back inside and reassured myself, “you do not have to rush to Mom’s. She’s safe and you can go tomorrow. Treat yourself to a hot shower and some ice cream! Just as I headed for the shower another call came in and I realized it was “Wednesday” not “Thursday”. All of the effort I had put in to my work that morning was wasted time. I had done the wrong days work. I would have to backtrack and edit everything.

Before doing anything else, I shower and ice my injury. My shower re-energized me and the swelling in my hand improved after icing. I was feeling better and no longer worried about a potential trip to the ER. Since realizing it’s “Wednesday” and not “Thursday”, and that I didn’t have an interview in a few hours, I made the decision to go to moms after all, and address her needs.

Upon returning home from moms I felt quite accomplished, but exhausted. I video chatted with some long distance friends and allowed myself to unwind. As time passed, the pain in my wrist and hand became increasingly unbearable. I knew I needed to get it evaluated. Yet, my stubbornness led me to wait until the next morning. What a long agonizing night.

Urgent Care

The next morning, which indeed was the actual “Thursday”, I went straight to urgent care. Diagnosis: fractured and they discovered two previously healed fractures. Now I wait for Ortho referral. They marveled at the pain threshold required to endure two broken bones, without even realizing they were broken! Sadly, most spoonies dealing with painful chronic illnesses unfortunately understand. I carried on with my scheduled interview that evening and then relaxed the rest of my “Thursday”. Looking forward to a fresh start “Friday”!

Now I wait for ortho referral

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.