Tag Archives: victory

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.

EM

MOTHER’S DAY IS COMPLICATED

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For many, Mother’s Day comes with conflicting emotions, triggered by all of the Hallmark-esque, posts, & comments of perfect children, perfect mothers, & perfect lives.

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