Ruminating..

I felt an urgency, a nudge to explore today, albeit a bit strange writing for me to begin, mostly because I don’t know where it will land. Possibly it will be just me preaching to myself, but I hope that along the way, it speaks to you. I’m usually so intentional as to my message, but there are days when you just need to see what bubbles up…

It’s no secret that I have a collection of autoimmune diseases. I’m quite transparent about them. I don’t share for the sympathy, but for solidarity. Most of us that battle chronic illness look quite normal on the outside, while inside, our body rages against itself.

The medications for said illnesses are more like poison than relief; although attempting to navigate the illnesses without them would cause more damage and devastation to the body. While many go a more holistic route, I’m trusting the science…

…however, at some point you have to take some accountability. To love yourself enough to make changes. For yourself.

The level of chaos that stress, anxiety and unprocessed trauma leaves within your body is insurmountable.

The body remembers.

The soul holds space.

I won’t replay “old tapes” here, as I’ve already written volumes on it, but pain is universal.

I’ve always joked about my Lithuanian/Catholic heritage and that my people invented guilt, but sometimes the level of guilt we hold-in, roll-around-in and walk-in daily is more destructive than anything. I do feel guilty that I’ve not taken better care of me. I do feel guilty that had I made better choices, some level of illness could have been prevented. Even while most of it is just really bad genetics.

Guilt and shame are really heavy. I mean really fucking heavy. But they are not independent, they are co-dependent. They require a “target” for their strength. While some carry enough guilt themselves, to punish themselves; others may feel their strength by serving it to others.

Guilt and shame are manufactured, they are not naturally occurring. Whether you are the one to hold it or the one to serve it, at its core, is pain. I know for certain that I have caused a lot of people, a lot of pain. I carry that burden. I own it. But I can no longer carry it. I have to put it down.

My body remembers.

My soul holds space.

Perhaps, you’re reading this feeling as though you have been served a lifetime of guilt and shame.

Your body remembers.

Your soul holds space.

That guilt and shame is not yours to carry. It is the deep rooted pain in someone else that felt better by hurling it at you.

“When you know better, you do better.” I’ve heard it a million times and said it almost as much. But there is such truth; a necessary accountability. When we know better, if we do not do better, we just play Ring-around-the-Rosie with the pain until we ALL fall down. When we take the accountability for doing better, we can be better.

I’m not that crazy to believe that by being better that I can make myself well. Yes, I have incurable illnesses, but I can be better. Shaking off guilt and shame ventilates a space that allows Love to expand her footprint.

To love each other better, is a grande notion, but what amazing and potential power there is in loving ourselves better.

When we learn to love ourselves better, we create a lighthouse for others to navigate their way. When we love ourselves enough to say “enough” to the things that no longer serve us or create real joy in us, we can truly be better.

This shedding of the things that are no longer serving us, might be:

  • Bad behaviors or habits that you have used for coping skills
  • A job that you dislike and carry with you to the point of punishing those around you.
  • A relationship that feels one-sided, empty or unhealthy
  • The “old tapes” that I mentioned earlier that seem to replay over and over.

The body remembers.

The soul holds space.

Peeling back the layers of pain is super messy and really fucking hard. YOU. ARE. WORTH. IT. Your literal health is depending on it.

The old joke, “ How do you eat an elephant? One bite at a time” is actually pretty sage advice. Make a conscious choice today, to do ONE thing better. And the next day, ONE more.

Help your body to change its memory.

Give your soul the nourishment it needs to grow and not just hold space.

Be well.

Love well.

For Yourself.

Blessed be ❤️

From Where I Sit…

It’s weird the things you think about while you’re sitting on the floor of your bathroom. Yes, I also understand that it is strange for me to be sitting on the floor of my bathroom. More about that in a moment, I need to back this story up a bit…

Many months ago, I hadn’t been feeling well. I had this bizarre-o rash on my face, fatigue that would not be tamed and a general ‘not well’ feeling. I landed in the heart hospital with horrific chest pain; three days hooked up to all kinds of beeping things. The diagnosis? Acid Reflux. I knew it was malarkey, but I went to my follow-up appointment with a plan to argue the diagnosis. My fatigue was brushed off as part of my depression. Um, no. Well yes, I battle depression, and no, this wasn’t it. But what was it?

I begged for more lab work, anything for more answers. I was a pest with a purpose; I’d wear them down until they directed me to someone else. Which they did. One visit with a rheumatologist, and we set sail for an answer. I prayed for an ANY answer! I ultimately got an answer, Ankylosing Spondylitis. Yeah, I hadn’t heard of it either. As I researched the autoimmune disease, the more it seemed to fit. As often happens in autoimmune disease patients, if you have one, you have multiple. I was also diagnosed with Fibromyalgia. It all seems to make the other issues, of my medical past, connect. Vitamin B12 & D deficiency, Chronic Kidney Disease. Sheesh, quite the laundry list.

Meanwhile, back on my bathroom floor… As I sit here, I’ve been on 3 different medications over as many months. Insurance got to make the decisions as to what I must ‘try’ before the current medication, Methotrexate. It is categorized as a low-dose chemotherapy/immunosuppressant. Short story, the stuff that destroys your immune system so it quits trying to attack itself. So, here I sit, the day after my Methotrexate. Nausea, fatigue, the battle between wanting to wretch or take a nap. Typically, I’d be stressing about the dust bunnies behind the potty, thinking about how the walls need to be wiped down or how I really never liked this shower curtain. But today, as I sit here, I feel defective, coupled with the guilt of feeling this way. I’m not battling a life-ending disease, today. I’m fighting against being disabled. But that’s exactly how I feel. Dis.Abled.

PERSONAL PHOTO

As I first mentioned, it’s weird the things you think about while you’re sitting on the floor of your bathroom. I’m thinking about my lack of ability vs disability. In this moment, for now, I’m not really able to drive to the pharmacy to get the recommended vaccine [before starting the next phase of my treatment]. It’s only a temporary setback. It’s not as if I am in a wheelchair or anything. That’s being disabled, right?

Imagine driving around your supermarket/pharmacy and see a vehicle pull into the handicapped spot. You expect to see someone get out with a walker or the ramp lowering for their wheelchair. That’s being handicapped, right? Well yeah, it is right. But it isn’t the only right; disability comes in many shapes and sizes. Sure, we’ve all judged the overweight person on a ‘scooter’. “If they weren’t overweight they wouldn’t need that thing”, right? Fess up! We’ve all thought it. When we see someone step out of a vehicle on their own volition, we also think, “They don’t look handicapped.” I’m as guilty as the next guy. And as I sit on my bathroom floor, it’s as if I’ve been literally been dropped on my butt for my way of thinking.

We are so quick to be the judge and jury of someone else’s conditions. We minimize the needs of other’s to maximize our own. While I am the first to acknowledge that there are others who are struggling far worse than me. Yes, I am fortunate, I know that. However, by minimizing our weakness, we also minimize the level of understanding for those around us. I have to be truthful with what I’m struggling so that other’s understand.

My (our) truth is necessary so that we may recognize the truth in others. My truth, there are going to be days that I have to pull-in, lay down and honor my body. It is also my truth to share with others, so you know –the truth – Yes, I’d love to attend your special event! The truth of the matter, I may not have the energy that day. I may be struggling with excruciating pain. I may be concerned about the fact I will have no immune system to fight against a simple bug. Please understand.

The next time you circle the parking lot at Target, and spot someone pulling into a disabled parking spot, remember those of us with invisible illnesses. Those of us that ‘look fine’, even though we are not. The next time you see someone cruising the grocery store aisles in their ‘scooters’, ask if there is something you can reach for them. Reach out, reach up. Reach down, you may just have to help a gal off the bathroom floor!

How Not to Fake an Illness

“..but you don’t look sick.”

Ugh, I can’t begin to count how many times I’ve heard this over the last 5 years. Shortly after MyLove and I were married, we discovered I had Chronic Kidney Disease. Long story short, my kidneys were no longer filtering correctly. Their function has ebbed and flowed like the stock market. Sometimes they have dropped significantly, only to rally and lead me to believe I was in the clear.

In recent months, I’ve felt really rotten. I have battled with healthcare professionals to give me some kind of answer. My stay in the heart hospital was brushed off as acid reflux, my fatigue was simply a side effect of my depression. While this may have been the case for some, I knew better. I know my depression. I’m sort of an expert at it since I’ve battled it since my teens. THIS, this fatigue was not part of my depression. And I’m pretty damn sure that acid reflux does not land you in the heart hospital for THREE days. With a simple eyeroll and swish of a pen, I was dismissed. Just. Like.That.

I begged and pleaded with a nurse practitioner, send me somewhere, anywhere, anyone. I didn’t care, just help me find someone who will truly listen. Cue the harp strings and angelic voices, I found a doctor who not only listened, but had answers. I had a diagnosis, I actually had more than one. [Autoimmune diseases tend to hang out with other autoimmune diseases; you don’t typically just have one.] I have a B12 deficiency, Fibromyalgia and Ankylosing Spondylitis. Stir that all up with some kidney disease and you get a pretty pitiful me.

The fatigue is overwhelming. The pain, constant and persistent. But, I don’t look  sick. Upon closer examination, you may discover the plethora of medications have caused hair loss. MyLove jokes about my eyes clicking* when we’re trying to settle in for a night’s sleep. And sleep, oh that jokester. Some days all I want to do is sleep, and at night, not a wink. I catch a nap occasionally, but it does not recharge my batteries. It’s as if I’m a defective cell phone cord, never fully charging. The wicked humor of my disease, when I’m idle too long the pain is excruciating. If I try to do too much, and I’m run down for days after. A roller coaster that makes you scream in anticipation and nauseous all at the same time.

While I’m busy trying to stay busy, the stuff that is supposed to keep my body held together, is quietly screaming inside. The medication designed to help alleviate the worst of it, makes me more miserable. No, this is indeed how to NOT fake an illness. This is how to fake fine. I don’t want pity or to look pitiful. My pride screams in a voice that resembles mine. I want my normal life back. I want to scream over the wasted years, I squandered my health as if it would always be well.

It’s in the screaming and noise of self-pity that I find my new-normal. I’ve discovered that I am a work-in-progress on MANY chapters of my life. My resume has now been altered, subtracted and added to. I don’t have the course perfectly laid out in front of me. And being the rebel I am, I would have thumbed my nose at the ‘best laid plans’ and go it my own way, anyway.  I’ve met people on a parallel path, it is a beautiful symphony of tears and cheers. We have become fighters for our own health AND our diseases. While I am no expert on the disease, I’m becoming an expert on my diseases. Trust your gut, your inner voice, press in and press on. You are your greatest advocate. Fight for YOU!!!

Life is a journey with rough terrains, smooth sailing, rocking the boat, dancing in the rain… and some days, you just fake it to make it.

 

[* that clicking noise, persistent dry eyes and Uveitis]

Today

Today I know I have Ankylosing Spondylitis

Today I will grieve the life I had planned
I will be sad,
For me
I will cry
And cry out
Why me?
But just for today
Today,
My body is broken
And waging war upon itself
Today,
I will be miserable and shout obscenities
I will be angry at no one in particular
Just because, today

Today my precious granddaughter turns three
Today,
Her smile will warm me
For a moment
Today,
I will cry
For her
She won’t know the fun loving
Sit on the floor
Putting puzzles together, Grandma
For very long
But today,
She has me
The grandma no different
From yesterday

Tomorrow,
Is not promised
In life or
In death
In joy or
In pain
Tomorrow is,
Unseen and unpredictable
The plans we make,
Can change in a heartbeat
We cannot escape tomorrow,
Wishing for yesterday

Yesterday,
Is gone
It wasn’t
Bad or
Great.
But yesterday,
I didn’t have AS
Yes,
Logical brain,
I did.
But I didn’t know,
Yesterday

Yesterday,
Sometimes,
Looks better in the rear view mirror
“Objects may not be as
shitty as you remember”
Yes,
Yesterday might have
really sucked, too
Everyone has a yesterday,
Not everyone,
Has a tomorrow
So today…

Today,
I will grieve
If I feel like eating
It will be
Ridiculously unhealthy
I just might,
Wash it down
With some wine
Today,
I will roll around
In self pity
For me
For everyone around me
But just for
Today

Only today…