Tag Archives: sjogrens

“LET’S TRY THIS”

July 31, 2023 Em 5 Comments

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!

WAKE UP IN MY SHOES

November 25, 2022 Em 3 Comments

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.