Autoimmune Disease

Beyond Recognition.

I woke up last night, facing the wall. My eyes adjusted to the depth of the darkness and, by habit, a thought: “is he here?”. As if the movement is automatic, a quick head whip and body twist…

He was there.

I exhaled relief as if it makes a difference.

But for some reason, it does.

🦋

The thoughts… they’re so overwhelming.

What day is it?

3 more days.

My birthday is creeping up too quickly and I’m singing songs of guilt and loneliness. There is a gaping hole in my heart…..

This is year one that i won’t hear my story…. Am I still anyone’s miracle baby? Not for every single birthday of my life (has anyone told me that they’re so thankful I made it through), I’m not…

|What a beautiful angel you were for us here, and what an angel you are – shining brighter than ever in Heaven. We love you Mimi, and we miss you to Heaven and back again. ☀️|

She loved this picture..👆🏼😂😍😘

❤️☀️🦋

“I’m glad you’re here, Bay.” He says so easily. It fits so well into my ear. And almost an entire decade later, I wonder what I do that keeps him around…

☀️

As soon as anyone sees the monsters that I carry – unwillingly, they run.

These damn, painful,and debilitating diseases have the worst, scariest, and oddest faces as they get uncovered. And I am always forced to expose them myself

because:

I can’t hang out.😈

I can’t go to a movie last minute.👹

I can’t go for a run around the park.👺

I can’t go drinking tonight.💀

I’m sorry, I can’t today. Or any day. Because my body is melted into the couch, and to put it simply, I cannot move

🌻

I’m far too stressed; beyond anyone’s recognition.

Betrayal, manipulation, guilt, disappointment, loneliness, sickness, exhaustion, pain, shallow breathing….sometimes I’m not strong enough to hold the emotional pain that it all brings, along with:

Fibromyalgia and Sjögrens show up, once again, as if they were long missed friends…

They roar their mighty domination.

Mono has decided to repay me a visit. It’s magnifying.

I’m at my worst.

My eyelid is swollen from mono, and it’s so painful on my eye! I had a warm compress yesterday on it for most of the day.

I woke up this morning with a mouth ulcer (that cover the inside of my mouth -I’ve had them since I was very young) on the OUTSIDE of my bottom lip. No. Not a cold sore. An ulcer.

My body aches. My throat is on fire. My head…oh my head. My skin is so itchy…I’m. So. Tired. – But that’s only the mono that you can hear right here…

“Why don’t you go lay down? You look exhausted! I’m just going to play video games!”

A selfless wonder in this world – caring for other’s best well-being

I agree with him. But in my head, I know I can’t move right now. So I’ll wait for several minutes – hopefully I’ll regain the strength.

7 doctors every year. 2 of which I see every 3 months

Possibly some ER visits.

12 prescribed medications. And most twice a day.

Planning to ask the rheumatologist for a different treatment when we see her on October 12th, 7 days passed my birthday – that just wish we could skip in the calendar for this first year.

Always such stress this time of year.

A gaping hole in my heart that I try to figure out how to sew it up, what to sew it up with, and how to fill it full of love like Mimi did just last year before it’s closed for good.

I feel like I’m keeping none of the promises that I made that sweet and perfect angel, now above… I’m not being a good daughter. I’m not being a good grand daughter. I’m not being a good wife.

And then:

I fall and am caught before hitting the ground.

I turn around.

I look down at my hand.

I twist to look beside me at night, snuggled under the covers.

He’s there every time. Even when he’s not there…he leaves his heart bleeding for me.

🌤

I’m not sure how I deserve such a beautiful, strong, forgiving, willing, and protective, love. But I’m glad that whatever it is, apparently I continue to do it…

I love his passion for life.

I love the way he looks away from you as he lies.

I love his “plot twist!” comments on life in general.

I love his eyes… 2 different shades of blue… Oceans that I could get lost into forever.

I love his laugh when he REALLY laughs – a hearty, throw your head back because the joy inside is far too superior to stay within your being.

I love how he makes me laugh, and then acts like he wasn’t trying to.

I love how he thanks me for doing chores that are mine to do.

I love how he rubs my back and gets my pressure point “knots” out before I fall asleep.

I love how he falls asleep on the couch with Dottie in his lap. Our big 65lb border collie mix.

I love his genuine kindness. His NEED to help others.

I love his strength, but –

I love how gentle he means to be with my fragile body.

I love how he saves me every time.

I love how he tries and wants to understand.

I love how he’s just there.

And I love how he makes my heart full again.

❤️

Thank you Brady for trusting me with the most breakable part of you. I love you. ❤️

I don’t want this moment to ever end
Where everything’s nothing without you
I’ll wait here forever just to, to see you smile
‘Cause it’s true: I am nothing without you

Through it all, I made my mistakes
I stumble and fall, but I mean these words

I want you to know, with everything, I won’t let this go
These words are my heart and soul
I’ll hold on to this moment, you know
‘Cause I’d bleed my heart out to show that I won’t let go

Thoughts read are spoken, forever in doubt
And pieces of memories fall to the ground
I know what I did, and so I won’t let this go
‘Cause it’s true, I am nothing without you

All the streets, where I walked alone
With nowhere to go have come to an end

I want you to know, with everything, I won’t let this go
These words are my heart and soul
I’ll hold on to this moment, you know
‘Cause I’d bleed my heart out to show that I won’t let go

In front of your eyes, it falls from the skies
When you don’t know what you’re looking to find
In front of your eyes, it falls from the skies
When you just never know what you will find

I don’t want this moment to ever end
Where everything’s nothing without you

I want you to know: with everything, I won’t let this go

These words are my heart and soul
I’ll hold on to this moment, you know
‘Cause I’d bleed my heart out to show that I won’t let go

-“With Me” by Sum 41

❤️☀️🦋,

Bailey

5 thoughts on “Beyond Recognition.

  1. He is what a husband should be and more. It took me a divorce to figure out how to treat a wife and he gets it. It does help to have such a beautiful bride, too 😋 I’m sorry for all the pain you go through. I’m happy he’s such an outstanding human being and how you found a relationship that is bound by fate/destiny/. I’m still here for you, Bailey, my friend. I apologize for the absence. Hey! Happy belated birthday!
    I love to see that you’re still writing. I hope this message finds you in good health. I’ll catch up with the rest of your post soon. Take care, Bailey! Great job on expressing your feelings and gratitude by the way. Keep on moving that pen ( or making keyboard strokes😅😋)

    Liked by 1 person

    1. I had a long response typed out to you and fell asleep – dropped my phone, and the response is gone!🙈

      I’m so sorry to hear of your divorce Trey. We all have our ways of learning. I’m currently trying to find the energy and strength to celebrate Brady’s birthday on Friday. Not sure where I’ll find those spoons…
      I wish I could tell you I am in good health, but it would be a very large lie. We’re possibly going for a second opinion in the closest LAAAARRRGE city.
      Hey and thank you for the bday wishes and also for the kind compliments!!! God – I wonder what I would look like if I looked how I feel…😳
      I’m still writing, I have a lot to write. I’m just exhausted. Beyond exhausted. That word is so over used. I would say that but having the strength to walk to your bed is pretty damn exhausted.

      And Brady’s bday is Friday… I’m trying to figure out how and where I’m going to find the strength and energy to go out to celebrate. 🙉🤯😳
      It’s 6:30pm and i think I’m going to bed. Yep as soon as I post this😬
      I’m always here for you too, Trey!! I hope all is good while you’ve been away… hope to speak with you soon!!!💖

      Liked by 1 person

      1. Example A 👆🏼 is what happens when you reply in bad timing. 🤦🏻‍♀️

        Brady is an incredibly good husband. I think he has that natural need to care for people. He’s a charge nurse actually, so he cares for people for a living. I always try to make sure he doesn’t feel like my caregiver though. There’s a very very verrrrry thin line between husband and caregiver for us… it’s hard to balance. But I never want him to leave me because he wants “a wife, not a patient” type thing. That’s always in the back of my head.
        I am sorry, to say again, to hear of your divorce. Like I said, we all learn in our own ways – and sometimes it takes the extreme.. quite unfortunately.
        (Thank you so much for the kind compliment! You always cheer me up ☺️)
        The weather here has been overcast and rainy – almost every day. Which is amazing, we don’t have moisture here – almost ever! But it does do a number on my joints. It’s Been a long 18 months. Plus this time of year is stressful in itself with trying to figure times around Brady’s work that we can do birthdays, thanksgiving, and Christmas! This is also the first holiday season without my Mimi. So we aren’t sure…. about anything really.

        Thank you! Birthday was same ole same!!
        Went to the doctor a few days after and learned that flu season is running rampant around here… she’s telling her patients to stay home if at all possible for 6 months. Like “here let me reschedule Christmas for you”….🤨🙄 haha!
        Phone texting is the way to go on blogging!! 🤗
        I have so much to write on in my head. Just trying to figure out how to go about it and also get the energy up enough to where I don’t fall asleep in the middle of writing it. 😒 (we are trying something new with my rheumatologist… giving her this chance…. and if it’s not better – heading out for a second opinion.) she’s actually trying to get me in some type of study?? Not sure.

        Anyways, thank you for having my back and giving me the courage to express my feelings around here. I also need to catch up on your posts.
        I noticed you hadn’t been around as much, so I hope all is ok!!??!!
        Anyways, until later Trey! Have a good one!!!😄

        Like

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