Autoimmune Disease

Salt Water

Not sure where this post is going to end up at the end. There are so many things that I’ve been avoiding bringing here, but tonight, I think I’m strong enough to let it all out without a huge breakdown. Cross your fingers. . .

*inhale*

*long exhale*

~ brain zap ⚡️ ~

😖… every time. You have to take deep breaths though sometimes. I just keep hoping it will stop.

Four month check up at the doctor came around, Monday.

“So what’s going on since I saw you last?”

Nothing. Sick. Sinus infection. Ear infection. I’m dealing. Thank you, Alpha interpheron.

Starting two new medications…

One, I’ve been on before. It helps with the nerve pain and the restlessness at night.

Two, for my thyroid.

I’m not sure how to explain the depth of getting attention to my thyroid, finally.

For as long as I can remember:

Chronic Fatigue

Weight Instability

Doctors trained to read numbers, not you.

Me.

I’ve never had much say in this subject, but I’ve also had other things going on that made more noise than fatigue and fights with my weight to the doctors.

Now, we’ve come to a time when everything else has been treated and is under control. Thyroid is the only thing left to conquer.

~ Brain zap ⚡️ ~

Going through my records from my rheumatologist, I find that they first tested my thyroid in 2016.

And then I remember…

She wanted to refer me to an endocrinologist… She had eliminated everything else.

And then I. . .

Promised my Mimi that I would get better.

And then. . .

I canceled with the referral to the endocrinologist because Mimi got so sick.

And. . .

She passed away.

.

.

.

I forgot about the entire thing. With good reason.

Doctors are much like salt water. They are trained only to read numbers and to eliminate the worst of the worst before anything else – with consideration of your history as well as your family’s.

You know your baby. You know yourself. You KNOW!

And you may think: “they’re WRONG!! Why won’t they listen to me?”

With Brady being a nurse, I kind of get both view points.

They’re listening. They can hear you. They are also doing their jobs that we are unable to imagine.

Persistence, my dear. Persistence.

Figuring out what is going on in someone’s health is not an easy task. You know you! They saw someone else right before you, and they will see someone right after you – both patients probably are having far different issues than you have.

Your doctor went to school. School had books that were studied – words of exact happenings and numbers of which make up a disease, sickness, virus, bacterial infection. . .

You are far from a textbook.

You are a living, breathing, walking, eating, human being that is far from being described by words and numbers in a text book. If you could mix a drink from what your doctor sees and hears when they see you, go ahead and take a big gulp of salt water.

It takes a while… but “hang tough” kid. Everything will eventually come out in the wash.

Put your saltwater into a pan on the stove, and boil it – just as you heat up because you feel unheard.

Soon the water will begin to evaporate – just as symptoms are checked off of the list, one by one.

Eventually, you will adhere your promise, just like mine with my Mimi, and only the salt will remain as the water turns into vapor in the air.

It takes time to find the salt, but eventually you will.

 

 

Maybe this is my salt. . .

“Giants”

They may say, “You’re too small, you’re too young to do it all”,
But you’re a giant on the inside.
They may say, “It’s not enough, leave your dreams collecting dust”,
But there’s a fire that you can’t hide.

Actions scream louder than words
They can’t tell you what you’re worth

Break through the barricade!
You gotta keep on fighting, facing giants, unafraid!
Born to move these mountains out of your way!
Keep on fighting, facing giants. . .
You gotta keep on fighting, facing giants.

Courage comes when you leap,
In the dark before you see –
You’re a giant on the inside.
Banners fly, let them know who you are, bare your soul –
There’s a fire that you can’t hide

Actions scream louder than words
They can’t tell you what you’re worth

Break through the barricade!
You gotta keep on fighting, facing giants, unafraid!
Born to move these mountains out of your way!
Keep on fighting, facing giants. . .
You gotta keep on fighting, facing giants.

You’re a giant on the inside;
There’s a fire that you can’t hide

Break through the barricade!
You gotta keep on fighting, facing giants, unafraid!
Born to move these mountains out of your way!
Keep on fighting, facing giants. . .
You gotta keep on fighting, facing giants.

-Silverberg & Ruelle

“Oh how wonderful, Bailey! You just never gave up! . . . You-are-so-strong. . .”

I love you, Mimi. Thank you. 💕

 

☀️🦋❤️,

Bailey

 

2 thoughts on “Salt Water

  1. I’m happy that everything is being addressed with you as it should and hopefully, you can get some peace from that. Knowing that you’re holding firm to what you told your Mimi is a huge satisfaction in itself. Be proud and continue to be the strong, beautiful woman you are 😉☺️♥️

    I don’t go to the doctor much and that’s not a good thing. About a year ago, they found a spot on my liver that was worth investigating and the fear of it being something serious crossed my mind. I never heard the results. Unfortunately (or fortunately) I’m unable to feel the fear of death since my 2 years in Iraq. I lived there with the idea that I could be blown apart at any given time and I accepted it. I never learned to turn that off.

    Now I have 2 sons to live for. I say that to say I need to be willing to drink that salt water for them. Become a set of numbers and symptoms on a page, just you like you said and their is nothing wrong with that. Nothing wrong for wanting to be better and find a norm in this crazy life of ours 😅

    Liked by 1 person

    1. The worst of it all though, I’m not sure there is a norm, Anthony. There’s a normal for YOU. And a normal for every other individual person. We aren’t text books and that’s why doctors are doctors. That’s why their jobs are so difficult. It’s also why they get paid so much… ha!

      I really am so sorry to hear of the reason and environment in which you conquered your fear of death. Not so much conquered, suppressed may be the word. Only you would know that! (Thank you for being one of the many who risked their lives for our country)❤️.

      So many people are scared of doctors. Here I am at a point where i want to stop going to them because i know my body better than they do (so I thought)… turns out, my doctor was right. And a lot of times, it turns out that way.

      So let me tell you a couple things…
      1. Thank you so much for the sweetest compliments. ❤️❤️ I remind myself quite often of my promise to her. She never asked me for a single thing in her lifetime, until she got sick. And my DD has actually just recently done the same thing (he better not be sick – even though I’m not sure he’s ever been healthy)… that promise is what keeps me going. Other wise, I would have settled for an answer far before now. And then the confusion for if it’s as good as it’s going to get, or could it possibly get better? I’m not honestly sure.
      2. I became unafraid to die when my Mimi passed, actually. She went home. And if it is my time to be called home, I’m perfectly ok with that. It’s not even a thought that has any depth to it anymore – just simply my name being called home.
      3. In the middle of my diagnosis for Sjögrens, they found a spot on my liver. While this of course could be different, to give you reassurance, my spot is called an angioedema. They watched it for a little while, and decided that it wasn’t what was causing any trouble, so they told me that everything was good. The described to me that it was basically a “benign tumor” of tangled blood vessels? Not sure.

      I think you should definitely get it all checked out again. You wouldn’t regret it, if it turns out to be something treatable, or maybe like mine even where there isn’t a need to mess with. I think you’d be glad to know, and to get it taken care of!❤️

      Like

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