Tag Archives: badass women

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

“LET’S TRY THIS”

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Those who know me well recognize that the length of time that has passed since my last blog post hints that my health hasn’t been great.

“In the fiery crucible of battling an incurable illness, she fearlessly harnesses the darkness, transforming it into fuel and igniting an unyielding spirit that blazes through life with an unwavering light that no healthy soul could ever hope to match.”

~Em Farwell

These past several months have been challenging. Trying to strike a balance between improving my quality of life, managing my symptoms, and dealing with disappointing test results has become an unexpected labyrinth that is stealing minutes from my life. Adjusting to medication changes has always been challenging for me, and it keeps adding to the torment.

It began when I contracted COVID back in December. The on-call doctor held back some of my medications while I was taking Paxlovid, but unfortunately, he didn’t withhold all the necessary ones, and it wreaked havoc on my lab results. Since then, it’s been a constant “let’s try this” game with my treatment plan, leaving me struggling with constantly changing side effects. It feels like I’m stuck on a hamster wheel; when one test improves, another one plummets.

During this time, I’ve had to tolerate changes in my medications and dosages, endure periods of isolation, watch my hair fall out, and witness my eyesight continue to decline. Adding to this jigsaw puzzle of torture, due to my medications & Sjögren’s, in just 6 months I went from having no cavities to having more than 10 cavities that I can’t afford to fix. It feels like an endless cycle of setbacks and obstacles that I am continuously struggling to overcome. All these physical changes and the thought of future ones (losing my hair, teeth, eyesight, etc.) take a huge toll on my mental health. I’m exhausted.

I am very grateful for my medical team. They’re putting in a major effort to help me through this time and to find solutions to improve my quality of life. Lately, I’ve started hearing phrases like “Hail Mary”, “last ditch effort”, “worth a shot,” and “running out of options” from my doctors, which leaves me with a sense of uncertainty.

The latest “out of the box” effort is to try biological therapy. The original thought was infusions; however, that would mean another monthly trip to Boston, which is 2 1/2 hours from my home. Instead, I will be giving myself weekly injections.

“with a biologic in the class of biologics known as selective costimulation modulators to target the cause of your inflammation and reduce the activity of your immune system”

I began the biologic last week. Thankfully, I’ve only experienced mild side effects. I did have bruising and tenderness at the injection site, along with chills after the injection and a lingering dull headache. Throughout the week, I’ve felt out of sorts, but I’m prepared to fight through adjusting to a new medication.

Finding balance and knowing if a medication is working for me can take months. Despite struggling with the thought of self-injecting, I keep reminding myself that I’m doing it with the hope that this will improve my current situation and lead to better days ahead!

Today was Week 2 of therapy. The actual process wasn’t any easier. I still hesitated and had to run through a whole gymnastic routine mentally before actually injecting the medication. But I did it, and I’m choosing to have faith in a positive outcome. I may be exhausted, but no one should be so brazen as to dare count me out!

EM

DON’T INVITE THE BEARS

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Handling toxic situations can be challenging, and if we don’t approach them differently, we are setting ourselves up for failure. We will be doomed to live like salmon swimming upstream, expending energy and effort, only to make a few inches of progress. The difference is, the salmon don’t invite the bears to disrupt their momentum, to push them back to the starting line, or to pick them and their friends off one by one and eat them for lunch. Every time we allow a toxic person to disrupt our lives and force us to start again, it’s like inviting those bears to lunch.

Don’t invite the bears!

While toxic people are responsible for their actions, we are also responsible for what we allow in our lives. Although it’s understandable to accept apologies, if we continue to allow toxic people to stay and wait for them to change, it will poison the whole stream and cause innocent people to suffer. We bear some responsibility for the harm it brings to our journey. While the intentions are good, and some people love deeply and want everyone to be happy and thriving, continually living with toxicity while hoping things will change will never bring peace.

Everyone handles personal boundaries differently. Some have no boundaries and take on the burden again and again, some allow those lines to blur depending on the person crossing them, and some fiercely enforce their boundaries and protect their peace. There are even people who invite the bear to lunch, and we’ve all had toxic people slip through our radar. In these moments, it’s often not the toxic person paying the price and being given a chance to grow and learn, it’s innocent people, good people, suffering again and again. We have to see these moments as opportunities to learn and strengthen our boundaries.

Not everyone who is toxic is evil or cold-hearted; many believe they are coming from a place of love. Often, it’s a learned behavior or a response to trauma. We’ve all exhibited toxic behavior at some point in our lives, but the difference is, we learned from our failures and grew from the experience. We must be willing to force the hand of those who are harming themselves and others, even if it means letting them go to create space for growth. Sometimes it’s necessary to break the toxic cycle and prevent them from stealing joy and energy from those around them. As a friend, I won’t blindly support everything you say you want on this journey. I’ll always meet you where you’re at, but I expect the same in return. It’s essential to expect what someone is capable of and not accept anything less. We must love someone enough to challenge them and push them to grow, even if it’s uncomfortable in the moment.

If you want a friend who won’t be honest when you’re hurting yourself, me, or others, I’m not her. But if you want a friend who will fiercely support all of your efforts to become the person you want to be, sign me up.

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.

EM

TAKE INVENTORY

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I may be an enigma. If I am, I’m ok with being odd-woman out.

I do not play with drama. I will not listen to gossip. When it comes to love I’m all in. My integrity means more to me than anything. My reputation is so far down on the list of things that matter. Giving first is a compulsion. I trust until given a reason not to. I’m not afraid of confrontation. As a friend, I’m all in. I choose kindness, honesty, love, & peace.

I have a few sayings that if you know me, you’ve heard.

~“Don’t waste your minutes.” Life is short we are only given so many minutes, don’t waste them.

~“Make good choices.” We all have choices. Don’t let anyone make them for you. Remember all choices come with consequences so put thought into them. Once you’ve made a choice, own it. If it was the wrong choice, learn from it, make amends, & move on.

~“Protect your peace.” Set strong boundaries. Do not bend them for anyone. Personal peace is as vital as breathing when it comes to quality of life.

I don’t try to fix people or their problems. I support them, love them, but allow them the space to fall. All of life’s stumbles teach us how to be better. I won’t take the chances to learn away from others & I do not let them take them from me. I’ll handle my business & be grateful for loved ones support.

This time of year we all start taking inventory of our lives. Checking in with ourselves, what we like, what needs work, what we can leave behind, what we need moving forward, etc… We seek out & celebrate our blessings, reminisce about those we’ve lost, & make an effort to express our gratitude to those still here. I always try and do this all year. But life is busy & messy. I’m grateful we have this time to remind us to focus on what is important & to contemplate changes that may be needed.

Kindness doesn’t have a season. It’s so simple. Start with being kind to yourself & it’ll grow. It’s so much better than growing the gossip grapevine.

EM

WAKE UP IN MY SHOES

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Wake up in my shoes.

I slept. It wasn’t long, probably less than an hour. But I slept. As I awaken, I thank God for another day. Now comes the worst part of my entire day.

My eyes open, not fully, just enough to let a sliver of light in. My morning is seen through the sandman’s sleepy seed remains, in the corner of my eyes. I contemplate opening them further. I’m not yet ready.

I’ve talked before about that first step. It brings me excruciating pain & remains the most difficult step, I’ll take all day. I lie in my bed for a long time slowly talking myself into getting up. I’m finally ready, I’m full of dread and drag my legs to the side of the bed. I sit there and again give myself a pep talk. I set my first foot on the floor, then my second. I feel around to get my feet in my slippers. I sit awhile and then push myself up onto my feet. I’m standing. I did it.

There it is, my morning kick start…pain. It starts in my feet and crawls up my legs into my back and ends at the base of my skull. It feels like every bone, muscle, tendon, nerve, every single fiber of my existence is on fire. I’m in my head screaming, this will end, this will end, this WILL end! It takes me a minute to refocus on the task at hand & I eventually take that first step. Other steps follow and over about an hour the pain subsides.

Here’s the thing, my pain tolerance is high. I’ve endured nagging, lingering pain for over a decade with this disease. My pain level holds at around seven all day, every day. The pain of those first steps is so far beyond measurable on the pain scale, it’s impossible to convey. Starting my day is physically & mentally exhausting.

I go to bed every night knowing I will play this whole scenario out again for all of my tomorrows. Here’s the miracle in this story. Every day I’ve been lucky enough to wake up. So far I have a perfect record for taking that first step. I’ve managed to survive the pain 100% of the time. I have a full & happy life. It’s just more challenging than it used to be & some days I have to surrender & let pain win. But the next day I take that first step again.

I know that many of you can relate in some way to this post. You’re not alone, I’m proud of you & never forget the amount of strength that first step takes. You slay dragons before your feet even hit the floor & that is badass. Carry on Warrior.

EM

LET’S GO BACK PART VII: Waiting On Insurance

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“It’s such a web that’s weaved. Each individual silk line slowly forming a web that those with an illness must live within”

Continue reading LET’S GO BACK PART VII: Waiting On Insurance →