A Catalog of Chronic Illness

After 20 years of being ill and undiagnosed/misdiagnosed...I am entering my 4th year of treatment...I am finally ready to speak, to not be silent anymore.

[acatalogofchronicillness]

My veins say...no more.

[acatalogofchronicillness]

He had seen the whole of her during her illness, had come to know her soul, and it seemed to him that he had never loved her before then.

Anna Karenina, Leo Tolstoy

[acatalogofchronicillness]

My last 48 hours consisted of fasting and blowing air into tubes every 20 minutes. Checking for SIBO again, as the master thinks I might still be dealing with it, and it could be the cause of my adrenals and hormones not recovering. We will find out. 🌬

[acatalogofchronicillness]

Fun morning...blood work to prep for my appointment next week. They had to stick both arms because they couldn’t get enough blood out of the first one. 😢🖤💉💉

[acatalogofchronicillness]

Two weeks ago I finished my year long rehabilitation training program. In the last six years I’ve gone from being completely sedentary, bed-ridden, not being able to climb a flight of stairs, not being able to withstand long travel or excessive walking, muscle loss and muscle atrophy to where I am now - back out on the ice doing things I haven’t done in 7 years, 8 hours shifts on my feet, working out twice a week, and building my muscle back. It’s imperative that I keep my body strong and my immune system up so I can say : See you never, Bartonella. 💪🏻💪🏻⛸⛸🧘🏼‍♀️🧘🏼‍♀️🌟🌟

Post-Rehab Personal Training and Therapeutic Massage Therapy

[acatalogofchronicillness]

My new friend...adrenals, thyroid, and hormones GTFO.

Tired of playing the game “how many things is my body NOT making.” 😭

[acatalogofchronicillness]

My post-treatment healing MVPs. 💪🏻💪🏻🌟

[acatalogofchronicillness]

Still treating some residual inflammation, pain and neuropathy in my feet. It’s been over a year now, but it’s getting better each month. Looking forward to the day it’s hopefully gone for good. 🌸

[acatalogofchronicillness]

This tattoo has slowly been forming for me over the past several years. It’s about survival, resiliency, being a warrior, and refusing to give up. I’ve had to survive many things in my life, but this disease takes the cake. It’s been the fight of my life, and I wanted a daily reminder to always choose - to choose to live, and to fight. 🎂🌸💉

[acatalogofchronicillness]

Promote and inspire healing. Speak to your body, words it needs to hear. 🌸

[acatalogofchronicillness]

I'm still a survivor.

But I'm begging to belight her,

It's all on me to set this free.

I've lived, I've lived, I've lived,

For more than two of your lives.

I've lived to move these mountains aside.

I've lived just by staying alive.

So won't you please, please.

Please, please, please.

Please, please, please, please.

Release me.

Release me.

[acatalogofchronicillness]

Here we go again...prepping for my appointment next week. The first time I haven’t seen Dr. M every 3-4 weeks in 3 years! Feels weird, a little wrong...but also, feels like progress. 🌸💉

[acatalogofchronicillness]

It’s not invisible after all...healing is not linear. 

[acatalogofchronicillness]

Guys, im tired of pain. That’s all the eloquence I’ve got for you today.

[acatalogofchronicillness]

You survived. You lived. Now what?

How do you pick up all the shattered pieces, let go of the things you can’t have or never will be again? How do you take pride in the new things you’ve found?

Healing...has been different than I expected. I thought it would be more black and white than this disease. I thought it would be more...whole. I didn’t think I would be as daring. I didn’t think I would be as scared. I didn’t think I would be as lost. I didn’t think I would still break down.

How do you do this? How do you heal? The same way you lived. ...day by day, hour by hour, minute by minute, second by second. Laugh by laugh, tear by tear, scream by scream, breath by breath. Giving yourself grace, giving yourself permission to grieve, giving yourself permission to live. Never forgetting, never taking for granted, never giving up - never leaving the fight.

“It's not simple to say,

That most days I don't recognize me.

It's not easy to know,

I'm not anything like I used be, although it's true.

I still remember that girl.

She's imperfect, but she tries.

She is good, but she lies.

She is hard on herself.

She is broken and won't ask for help.

She is messy, but she's kind.

She is lonely most of the time.

She is all of this mixed up and baked in a beautiful pie.

She is gone, but she used to be mine.

It's not what I asked for,

Sometimes life just slips in through a back door,

And carves out a person and makes you believe it's all true.

And now I've got you,

And you're not what I asked for.

If I'm honest, I know I would give it all back,

For a chance to start over and rewrite an ending or two.

For the girl that I knew.

Who'll be reckless, just enough.

Who'll get hurt, but who learns how to toughen up.

And be scared of the life that's inside her,

Growing stronger each day 'til it finally reminds her.

To fight just a little, to bring back the fire in her eyes,

That's been gone, but used to be mine.

She is messy, but she's kind.

She is lonely most of the time.

She is gone, but she used to be mine.”

[acatalogofchronicillness]

Getting stuck once again...every two weeks is getting old.

[acatalogofchronicillness]

Between my two ER visits, and this new blood-work order every two weeks...I’ve had blood-work drawn every week for the last 4 weeks. OVER. IT. 💉