Lyme Disease Warrior

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The following is a complication of entries written in my journal a few weeks prior to starting my blog (Aug., 2015). Raw and somewhat unpolished, these thoughts represent an all too real, “day in the life” — this journey through Chronic Lyme Disease — a familiar path of many who suffer with Lyme and chronic illness.

More recent thoughts (shared Sept. 30, 2020*) have been added to the end of this reflection.

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August, 2015

I have to give myself a pep talk tonight. Thanking God for blessing me with enough energy to complete 5 minutes of simple stretches and a few (body weight) squats. Sad this is what constitutes a “workout” for me these days. Thankful, nonetheless, as these moments of being able to push, just a little, rarely happen.

My body is weak and I am incredibly weary. But I am a warrior (or so the saying goes).

It saddens me that my once strong, athletic body has faded away, replaced instead with muscle wasting and shrinking bones. My brain appears hijacked by foggy jumbled thoughts and delayed responses, especially when trying to comprehend what I’m hearing or reading. On days when neurological symptoms are more pronounced, sound and light sensitivity escalate to such intensity, complete silence with blackout shades provide my only peace.

I am fearful of my future. Fearful of deteriorating to the degree of what I witnessed happen to my beautiful, frail Mother, senselessly suffering with Dementia and Alzheimer’s.

I try to see the lessons to be learned from this journey. I know God has a plan for me. I know these trials and health challenges are part of His plan, and my path. But tonight, once again, sadness overcomes me… tears are free-flowing.

There are others who are sick and face difficulties far more significant than mine. That doesn’t lessen my reality, my troubles — genuine sickness, pain, daily suffering. I loathe being sick, feeling miserable day in and day out. Week after week. Month after month. Year after year.

Life… passes by… without me.

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I pray to God for strength. I pray for the ability to overcome these illnesses — constant weakness and misery. I pray for my body to be strong, to be active once again.

I miss the vibrant, strong-willed, independent, athletic, fun-loving, always on the go, full of sass person I used to be. Hubby has described me over the years as being either “sickly” or “sassy”. There seems no in-between. And without a doubt, we both have been stuck with “sickly” for far too long.

There are so many aspects of how life used to be that I deeply miss: playing golf, going for walks, working out, bike rides to play tennis with the hubs. I miss sunshine hitting my face, spending time exploring nature, capturing photos of glorious sunrises and sunsets, desert blooms and  plant life silhouettes. I miss traveling to see family and friends, especially the grandkids. I miss card nights and dinners out with friends, going shopping, running errands. Quite simply, I miss feeling well enough to leave my house — you know, being a “normal” human!

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Being sick every… single… day… is incredibly wearing and beyond challenging. But I got this, because… warrior… right?!

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It takes all my energy to get out of bed each day. And once finally able to do so, let’s just say morning routines have changed significantly from healthier days of getting myself polished, pressed and out the door for the office, meetings and 60-hour work weeks.

These days, “mornings” are a rarity. That would be a bonus “good” day! Generally, it’s late afternoon, and I’m definitely lacking energy (and the will) to “pretty” myself up. Seven-step skincare routine followed by makeup… yeah, that’s not happening. Maybe a splash of water to the face and eye drops to soothe these blurry, really dry, yellow-ish + bloodshot eyes.

Wow! Not gonna lie, looking in the mirror can be all kinds of scary!

My hair is a straggly mess, ashen and falling out by the handfuls. Dark circles under my eyes, with wrinkles screaming-out loud and proud. Disciplined skincare, along with sooo many aspects of trying to achieve that coveted “youthful” appearance… all MIA.

It’s not like I’m in the running for any beauty pageants, obviously. Definitely not taking any selfies. Move it along. Nothing to see here!

A quick brush through the hair (what’s left on my head!), then into a messy bun/ponytail “thing”. Comfy, loose-fitting clothes. And sleeves. Regardless of the temperature, sleeves are a must. Vanity sways me to cover up unpleasant scars left behind by Bartonella and mast cell activation disorder (MCAD) hives/scabs. And undefined arms — thank you lack of weight training for waaay too long. Thank you Lyme. Thank you tick-borne diseases.

Oh how the “thank yous” just keep rollin’!

Thanks to multiple medications, MCAD and extreme intolerance to heat + humidity, this body hasn’t seen the sunshine in forever. It’s possible I may even glow in the dark.

Let’s just put it out there, I’m not bringing sexy back anytime soon!

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Thank you, LORD — Marky May loves me, unconditionally. In sickness and health… literally.

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Extreme fatigue and nausea, feeling like I have a permanent case of the flu. This is my life.

Constant body temperature changes, feverish and chills combined with hot flashes and day/night sweats. This is my life.

Deep bone pain that migrates all throughout my body, just to keep things “fresh.” This is my life.

Setting alarms to map out medications and eating schedule — which changes daily, based upon how lousy I feel, severity of nausea, and what specific med cycle I’m on at the time. This is my life.

On a “good” day I’ll shift from the bed to comfy recliner, snuggled under a blanket or two, even when 100 degrees outside. This is my life.

Again, thank you Lyme disease (and too many chronic conditions to list).

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This is my life. The good. The bad. The disheveled and not so pretty.

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And above it all… I am truly thankful.

I’m thankful for the days I am able to get out of bed.

Thankful for the beautiful, calming views outside my window panes.

Thankful God has blessed me with another day to conquer.

Thankful for my caring and supportive husband, who loves me deeply, and sees me for me — the “sassy” chick he met 25+years ago*. (she still exists. deep down inside)

My list of all I am thankful for by far outweighs my struggles.

My life has been forever changed, most assuredly these past 20-years*, due to this relentless struggle with Lyme and chronic illnesses.

I hope and pray to learn from this trying and challenging path.

And through this journey, I will continue to lean on my faith, adoring husband, loving family and friends.

This is my life. Full of weakness and strength, grief and gratitude, perseverance, faith, hope and love.

I am indeed A Lyme Warrior. 

—Terry xx

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* Update — September 30, 2020:

Since sharing this post a little over five years ago, I hold mixed emotions while reflecting back. Much has occurred and changed, yet still, the core remains the same — these. diseases. are. relentless!

Several physicians, continued testing, various treatment protocols and therapies have all come and gone during these past five years. Glorious ups have been experienced, only to be foiled by disappointing, painful downs.

And so, here I am once more… weakened, overwhelmed, saddened… tears flowing.

If only this fight for renewed health wasn’t so flipping hard. Yes?!

A current pep talk has me embracing reality, and remembering  — this is the journey. His plan for me. His timing, not mine.

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For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

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We can map out our lives all we want — and come and go and do… or not. Reality remains, this ain’t our gig! We’re simply along for the ride, for as long as we’re blessed to hold on.

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“ In their hearts humans plan their course, but the Lord establishes their steps.”

Proverbs 16:9

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Repeat after me… “not my timing”…

Not. My. Timing.

I’m sharing these thoughts on an extremely challenging day, one of many within this difficult season. Needing to remind myself to let go… to breathe… to refocus. While leaving a few bread crumbs for future reference, as I’m quite certain this reminder will be needed, again, and again.

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So, lovelies, we hold on. We have hope. We pray. We keep the faith that “good”, “better” and “healthy” will happen. We do all the things we know and hope to be right… and we hold on tight.

One day at a time. One step at a time.

One. Breath. At. A. Time.

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Until my next Reflection…

Be Strong… and Courageous… and Fierce.

Be A Warrior!

Blessings, love and light — always.
—Terry xx

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A version of this post was published by TheMighty.com — I Am A Lyme Warrior

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