Tag Archives: scleroderma

EM

VOCABULARY VAULT

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As I sat here reading my latest blog post, I began laughing as I reminisced about a memory from my time in junior high school. My English teacher, Mr. McIntyre, marched me up the hill to the high school to have my first essay reviewed for plagiarism! I presumed that since I was in Jr High now, I should write to impress in my best vocabulist style. I turned in a piece full of erudite vocabulary, and I used every word my father ever taught us. My Dad gave us a new word everyday. We had to learn the definition. It seems that in writing my last post, I was so excited about using clear vocabulary and grammar that I ended up using excessive and exaggerated words. I may have been over eager in Jr. High and with my blog post.

However, the extraordinary vocabulary is out of my system now. I will leave my pompous writing in that one blog post and save it for future poetry. That being said, when the next big achievement in my health journey happens, I’ll go overboard, yet again. Anyone with a chronic illness knows we get few victories, but we celebrate all of them. Maybe my strength and endurance will improve and I’ll hike a mountain! I have always set goals and fought like hell to reach them. There was a time when I ran daily. Running was my meditation, my personal time and it helped my mental health tremendously! I lost the agility to run quickly when my illness struck. Amidst the turmoil of learning I was misdiagnosed and cleaning my system from all the wrong medications and treatments, I somehow had an epiphany! I decided I wanted to run one last race. Fully aware that I was slowly losing my mobility, I knew this was probably my last chance. I spent days building up the strength mentally just to get myself motivated to practice. Eventually I did a 5K. I paid for it dearly for quite awhile physically. But mentally I did not care, I was unashamedly high on pride and happiness!

I embrace the hope that the day will come, when I again entertain thoughts of running a race or, dare I say, marathon! It’s not fantastical; over the last several months, I went from needing a wheelchair a majority of the time to only needing one for long distances, after a long day, or when I’m having a flare. It’s not out of the realm of possibility that I could gain the strength to do another race. Those hopes, dreams, goals are fuel for anyone with an incurable, painful, and debilitating chronic illness.

I’m ecstatic that at the moment my brain fog is clearing and I can delve into the vocabulary vault in my brain once again, with clarity. I promise to use this knowledge wisely, and never write another sesquipedalian blog post! 😉

EM

PEACE

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There will never be peace in a world where so many struggle with their inner demons daily, jeopardizing their peace with every challenge they face.

No one is perfect; our lives are created based on the tightly woven micro-choices that make up the tapestry of our existence. Outside forces can amplify the burden of our struggles, yet we are faced with choices. Rare disease diagnosis? You can still choose to spread your wings and fly, or you can throw in the towel, in which case you’ve already met your demise. Financial issues? Perhaps you’re choosing your family over your career, a valiant choice. However, you can’t expect to keep up with your neighbor, who has all the things but never married or had children. Apples & oranges.

Every creative soul tells a story of struggling paycheck to paycheck just to pay bills while chasing their passions. They speak of how they are confronted with choices presented throughout their journey and the inner battle that comes with every choice.

I wish I could choose to be healthy and walk away from the financial burdens tethered to my chronic illness. I dream of resuming my career, advancing my education, and spontaneous travel. It’s a tempting choice, contingent on relinquishing all medical interventions. It would be an agonizing and short-lived adventure; without all of the medical treatments currently keeping me alive, my body would quickly shut down. I would not live long, and I am not yet willing to forsake a life filled with others who are in this struggle with me. These choices define my journey, and I’ll face the prospect of dying without sufficient funds for a burial before surrendering to my illness.

Every day I defy my illness, embracing all life’s offerings when able. From enduring an ear-torturing youth band concert for my loves to navigating the intricate medical preparation needed for travel. I’ll endure my injections, infusions, feeding tube, meds & catheters—the toll for living my best life alongside those who share in my journey. I have recently been blessed with another choice; a new out-of-the-box, hail-mary medical treatment, and its benefits have been life-changing! I risked everything on one choice, and its rewards are nothing short of life-changing. I’ve seen improvements in weight gain and daily mobility, enabling me to enjoy more travel and visits with family and friends. Even my writing is flowing, and all the words and grammar I thought I’d lost are coming back with infinite clarity! I’m tightly clinging to faith, trusting that these positive changes will persist; and although I will require perpetual medical interventions, I feel more hopeful than I have in decades.

The point is, that we all have choices, and each choice is intertwining with dozens of micro-choices. Opting for love and relationships over material possessions can be a challenging journey, while choosing financial security and possessions often leads to a lonely road. Choices aren’t inherently right or wrong, black or white, or universal for every person. Nevertheless, you will always face choices, and you must live with the consequences of decisions made. Every one of us has to forge our path. What works for one may not work for another. Choose wisely. Hold tight to the blessings some people would say are holding you back. When death comes, your cherished possessions will be dispersed, often sold or discarded. No one will be thinking about the times your piece-of-shit car broke down, or how you never finished your house due to a lack of money; instead, they’ll hold tight to your love. Share memories & forgive. In the end, the choices we make are the lasting legacies that will trump all material possessions. Choose wisely.

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.
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

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.

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

THEN IT HIT OUR HOUSE

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I challenged myself during the Mental Health Campaign to being more honest about my health journey. I’m holding myself to this commitment.

I love the holidays. It’s the perfect time to share smiles and lift others when life is weighing heavy on them. A chance to end the year with love & hope. I’m that person who decorates right after Thanksgiving. I send out hundreds of Christmas cards. I make dozens of random personal gifts for those who make my life better, in ways they may not even comprehend. I hide gifts around town & make baskets for the fire department, town hall, post office & animal shelter, to lift our communities spirit & say thank you. I pay attention all year & try to make or purchase gifts I know people want or need. But this year is kicking my ass & although I managed to get a few things done, it’s taking all I have. Every day I get slower & struggle more to get simple things completed. Christmas will look much different this year.

It’s the little victories that make me smile.

I’ve been going through it with my Scleroderma for the last few months. It’s raging again & it’s been difficult emotionally & physically. I’m undergoing treatments that come with side effects that amplify all of the negatives that come with a chronic illness. My jaw is destabilizing again and my teeth will take a lot of work to save. I’m losing my hair from the treatments & will soon have to just shave it off. The worst is knowing my brain fog has made me forgetful & I know I’ve let people down. It’s been damn hard. It wouldn’t be half as bad if my husband wasn’t battling health issues this year, as well. His doctors don’t want him working. They tell us he’s risking major damage to his body, and that one wrong move could be catastrophic. So we are sitting in a holding pattern financially. We sit at the mercy of his doctors deciding what surgery is next. He’s doing what he can to work, despite the warnings. Bills don’t care if you’re unhealthy.

Not everyone can afford to be sick.
That is just reality in America.

It’s one thing to be chronically ill & another thing to add in financial struggles. It’s astronomical the cost of survival. I’ve said it again & again, it does not matter how much you make, save or plan, we are all one illness away from financial disaster. On top of it all, this is one of the worst years for everyone financially. Heating, electricity, food, fuel, everything is more expensive right now & increasing regularly. Despite the negatives, we are fighting to have a great holiday & to share it with all we care about. Then it hit our house, Covid.

David tested positive first and was put on Covid meds the same day. We have to be aware and cautious of any lung or breathing issues with him. For those who don’t know he had lung cancer & a bacterial infection that resulted in the partial removal of one of his lungs. Both of his lungs have damage and it would be hard for his body to fight Covid if it settles in his lungs. I believe the meds are helping control his symptoms. He seems to be in a holding pattern, with no changes for the worse or better. He’s still battling but he’s remaining stable.

I tested positive late Friday night. Leave it to me to find out on the weekend and while there’s a major storm hitting us. I managed to get a hold of my doctor’s on-call service Saturday morning. It took hours and numerous calls back and forth between me, my PCP office, my doctor’s offices in Boston & the pharmacist. Finally, they had a plan. They called in some medications, changed the dosage on a few of my medications & held some of my regular medications. It was a whole process but I started the Covid meds Saturday night. I’m miserable. I’m trying to get up and move around as much as possible. It’s been a cycle of getting up and doing one or two small tasks & then I have to lie down again. My pain is maxed out & making it difficult to do the simplest things. I have slept more in the last few days than I have in decades. My normal nausea is increased, I’m experiencing excruciating muscle cramps & I feel like I have the worst cold, I’ve ever experienced. I’m hoping today improves with the medication. The doctors warned me that the side effects may be difficult and I may need to stop the medication.

I don’t know if Covid is ready.

Still, I carry on. Friday I did get some random gifts sent out to thank people who make me smile & I know don’t always get the appreciation they deserve. It took me all day yesterday, but I did get our tiny 4’ tree up & decorated. Today I will try and work on some gifts. It’s not looking like we will be having Christmas with our families on Christmas Eve as we planned. We realize we can not financially buy gifts right now, but we will make some amazing personalized gifts & bake some family favorites as soon as we test negative. We will not skip Christmas, just delay it if necessary to keep us all safe and strong.

I’m stubborn and refuse to change how I feel about the holidays and how I reflect on the end of another year. As usual, I will use my energy to make others smile. That will fuel my healing until I can find my smile again. So although we won’t be able to do all the things we normally do this time of year, we will still create a magical Christmas.

Today I may feel awful physically & under stress trying to figure out how we will pay for basic expenses & my treatments. But I continue to look forward to a healthier & prosperous New Year for everyone. I pray that Covid will not continue to be such a destructive force in the world. I will work hard to improve myself so I can bless others. I will continue to send smile mail & volunteer when I can. I will give freely my time & energy to those I care about & those who make me smile. Although I may be down hard right now, I choose to believe this too shall pass.

Happy holidays to all, for whatever holidays you celebrate. If you choose not to celebrate then happy end of the year! Be kind to yourself & others. In the worst of times there is always hope, love hard, & pray harder. I am so grateful for you & I love you ❤️

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.