smileon

Not Part Of My Plan

I googled
“ How to learn to ride a long board while wearing oxygen .”
“ How to successfully learn to sign the letter N with swollen hands “

This wasn’t part of my plan.

I dance to the beat of my own nebulizer

Smile through the pain .. and laugh through all I can’t begin to understand.

This wasn’t part of my plan

Why does it feel like I’m mourning a piece of me .

How did a treatment that made me so sick..
Become a sense of security?

Coughs and sneezes sending shivers down my spine .

Reminding me how before IVIG .
Mucus And fluid filled my lungs like a toxic kiddie pool
Time . After time. After time.

A red little pill is suppose to be my failing lungs saving grace
Eliminating illness before it can take its place.

But how could that work?
How can it be fine.?
A stupid little pill
I take half the time.

Will my hands lock in place
( like they did before )
Yearning to be free
Will my stomach once again inflate like a balloon
Sucking away my appetite and energy.

My mind constantly falls down a rabbit hole. Of what “ could be “.

Leaving a permanent kind of fear coursing through me.

When my councilor asked where I see myself 10 years in the future.

With tears threatening to escape my eyes.
I said “ hopefully there “

Envy constricting around my heart .
Reminding me that life isn’t fair.

I understand it all will be fine .. in the concept of eternity.

But how do I face , all that’s currently before me?#smileon 🐷 #buttonpoetry #MightyPoets #cvid #idf #primaryimmunedeficiency #sickchickstrong #raredisease #MightyTogether

I’ve been trying to “live my best life this week”
And for me that means ignoring signs my body gives me that it’s “done” because everything lately has been so physically hard. And my body can’t do much before it Starts giving those signals.

And Tonight I’ve been sitting here in pain.
Lots and lots of pain

I don’t regret any choice I’ve made.
Or the fun I’ve had.

But that doesn’t make the pain any less painful.

And it’s made me think..

The funny thing is.
My whole chronically ill life.
I’ve always been told “ Don’t do it if it’s going to hurt you. “

But the thing is in my life.
Everything hurts.
Even Breathing literally ALWAYS hurts.

If I never did anything that hurt me.
I would literally never do anything.

But it seems like as a society as a whole.
We avoid things that cause pain..

But if you think of it.. the GREATEST things we can experience in life. Have pain as a potential “side effect”

You can’t have or ever find love.
Without risking pain.. and quite honestly the worst pain you will ever feel.

You can’t have success.. without the risk and pain of failure .

You can’t get through this life.
Without pain.

But Maybe pain is like the glue.

A weird.. awful glue.
That has to be stuck between the good times in our lives

Because without it.

The good times, would be wasted. Instead of appreciated.

Maybe it’s pain, that makes you appreciate a sunset.
Or the opportunity to sleep next to the person you love. Every single night.

( and maybe in my case I’m taking about that big gorgeous fluffy dog who gives the worlds best hugs 😂 #singleaf )

Because of pain.. I’ve had some Horrendously dark moments in my life..
But also. Because of pain.
Some of the smallest moments, have became so much more meaningful.

I don’t want to say “ embrace the pain”.. because it sucks.. and it’s hard .

But maybe.. in the midst of pain. Remember it has a purpose.

Just that small thought. That small reminder has helped me during a very painful night ❤️

#smileon 🐷 #LatterDaySaint #Spoonie #ChronicIllness #painhasapurpose #CheckInWithMe #MightyTogether

Yesterday I came home from a terrifying 9 day admission ( 2 days in the ICU) and wrote this article like a week before I was admitted and crazy enough it got published today on @themightysite ! ❤️ crazy timing! ❤️. I’m so grateful to be an Aunt to the 2 cutest little girls in the whole wide world! I know my illness will be a part of their life.. and even though it will bring hardships.. I just hope it can be in a good way. #smileon 🐷 #ChronicIllness #aunt #TheMighty #MightyTogether #sickchickstrong

I am 7/10. I stand with 7/10 💪🏻❤️
Today is chronic disease day.
And I wanna tell you that A life full of illness, and a life full of pain can still be a beautiful life.

If you let it.. this horrid trial.
Can teach you the most amazing lessons

Today I sit here physically feeling horrible

But I’m grateful

Grateful for a heart that beats
For arms to hug my nieces ( no matter how swollen they are)

For a life.. I wasn’t quite sure I’d get to continue to live.

This 7/10. I may be chronically ill.

But I have chronic Hope. And chronic gratitude.
That I ( hopefully) have many beautiful days to come ❤️

#smileon 🐷 #MightyTogether #RareDisease #MCTD #autoimune #Survivor

( side note .. my neck has been swollen but never purple tinted 😂.. so I don’t know where they got that from)

But this article was CRAZY hard for me to share with the @themighty.

And even harder to post right now.

I typically view myself as a VERY confident person. But at times we all struggle.

And when your body, is this uncontrollable. Sometimes it’s honestly hard to love it, and sometimes it’s really freaking hard to feel beautiful.

I’ve been trying to live by a qoute that says. “ write long and hard about what hurts “. Because I believe vunerability is KEY when it comes to sharing your story.

So I post this.. nervously.. anxiously hoping my words will help someone in a similar situation ❤️

#smileon 🐷 #sickchickstrong #Spoonie #Prednisone #Confidence

Today’s one of those days where I feel like being a chronic illness patient means you get to talk to a brick wall, that keeps on trying to give you meds. 🤦🏼‍♀️. I feel like I’ve been on the phone with doctors offices ALLLLL dayyy.. and Ugh. I love my urologist. But his office is going to be the death of me ( hopefully not litterally!). I got a message today from my doc saying he has called a ton of people and is ready to do the bladder installations.. but I’ve sent like 6 different messages stating that I don’t want to do the bladder installations, cause they are treating a problem im not really worried about. And are honestly worse to deal with than that symptom. I RE STATED what I’m actually worried about. Then called his office and asked for him to call me when he gets the chance because I feel like I’m just getting. Lost in translation 🤦🏼‍♀️. Uggggghhhhhhhh... I want to see less doctors and be on less meds.. not do unessecary treatments! For real, I need to find a way to get this doc to actually listen to me at my upcoming appt. becuase I feel like I’m taking a crapload of steps to go absolutely nowhere. Being a rare medical mystery really sucks sometimes. But tonight ( I would have made it and shared it last night but I literally have no spoons remaining 😂). I’m sharing another INCREDIBLE rare disease story! So stay on the look out for it! Her message of self advocacy was something I definitely needed to here! #smileon 🐷 #Spoonie #sickchickstrong #RareDisease

Today my article was featured on #RareDisease on the Mighty.. this #ValentinesDay and every day make time for a little self love! Appreciate how far you have come 😉 love yourself “prednisone cheeks and all!” #smileon 🐷