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#MightyPoets Not Part of My Plan

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


What not to do when you see a sick person ! - new article!

It seems like sometimes when it comes to your chronic illness, friends, family, but especially strangers. Know exactly the wrong thing to say 😂❤️. Illness isn’t a “typical situation “ and it’s HARD to find the right thing to say.

In this latest article “ what not to do when you see a sick person” I share about the weirdest comments and advice I’ve ever received because of my illness.

And one Simple question you can ask that may save yourself from a major faux pas! #smileon 🐷 #Spoonie #ChronicIllness #weridquestions #sickchickstrong #MightyTogether #ThriverThursday #InvisibleIllness

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Maybe Pain is the Glue

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

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What I want my niece to know about my illness

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

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I am 7/10. ❤️💪🏻

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

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Write long and hard about what hurts

( 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

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Dear UROLOGIST .. can you listen.. PLEASE

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

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Love yourself #Prednisone cheeks and all!

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 🐷


No one ever made a difference by being like everyone else

I was asked about what some blood test were, and what they meant.

And I hated how the knowledge came so easy to me.
How without an ounce of medical training.
I knew all about immature granulocytes, creatine levels, inflammation markers and hemoglobins.

And then right after that we talked about my upcoming surgery.

I found myself longing for a life I most likely will never have.
A life of stressing for finals.. going to work. Going out with friends without a second thought of how badly your body is going to regret this.. and hoping they actually do something you physically can do.
Not having to literally carry a pharmacy on every date you go on.
And doing all the things the average person gets to do.

Instead of being chronically ill.
Knowing all this information because of YEARS of fighting a malfunctioning murderous body.

Envy has filled my heart as I’ve scrolled through Facebook and seeing what seems to be EVERYONES normal lives.

( I know they have there issues.. but most people it atleast doesn’t hurt every time they move.. or breathe.. and they don’t feel like they are constantly sea sick.. along with the plethora of other symptoms I have (Insert pathetic personal pity party here )

But then as I was scrolling in Envy.
I came across this quote
“ No one has made a difference by being like everyone else”

And it reminded me.. that my illness. And The things that make me different.
Give me a whole new perspective on life. ( I’ve got to experience life in a way that most people in there 20s will never experience )

And that. Has the possibility to turn my struggles. Into my super power.

And if you look at the things you struggle with.
They have the ability to do the same.

#smileon 🐷 #thegreatestshowmen #sickchickstrong #Spoonie #ldsblogger #beYOUtiful #ChronicIllness #unicorn #MightyTogether


#MightyTogether . Urology, rocks. And just a dash of hope

I’ve had a rough relationship with hope lately.
And headed into my apt. with my new urologist today.
I felt like I was getting a fast pass on the bullet train to failureville.
As I’ve stated before lately. It seems like lately.. all the doctors who want to help me.. can’t because it’s not in there field..
And all the doctors who can help me.. truly just don’t give a dang or even try.

I’ve been fighting for my answers and for my health for so long.
And lately it’s seemed like it’s been with little to no evail.

And I’ve kept on wondering
“Isn’t the definition of insanity doing the same thing over.. and over.. and expecting a different result?”

Is the fact that I keep on going to doctors, hoping for answers..
and having. Hope in general.
Bordering insanity ?

What’s the point.. what’s the point of going to doctors.. what’s the point of trying.. if nothing is going to change.

So I went to this urologist.. prepared for disappointment.
And I left. With laughter.. the worlds weirdest homework ( which I will go into detail about later 😂.. possibly even in a Vlog.. I feel like I need to share more about my life so I’m trying to do more vlogging)

And believe it or not just a smidge of hope.

Throughout the day.
I hid kindness rocks.
I gave candy to strangers.
I did little things that brought me joy.. and hoped they would brighten someone else’s day to.

But they helped me honestly admit.

That I’m kind of pissed off at life right now.
I feel like crap.. I mean I really.. truly. Honestly feel TERRIBLE.
and I’m
Scared.. I’m really freaking scared.
My health makes me feel worthless half the time.
I hate that so much of my life is out of my control.
And it’s not fair that things feel so hard right now.
When I’m trying so hard to do everything right.

Half the time I want to cry
( but for some reason I have the worlds hardest time crying)
Half the time I want to punch something.
And the other times.. I just feel exhausted.

And wonder.. how can I make the difference I want to make in this world.. how can I be as grateful as I should be.. how can I be what I should be..
When all I feel is exhausted?

But then one little post to my wall.
Showing someone actually found one of the rocks I hid.
Brought some much needed light.
To what’s been a pretty dark week.

Maybe the small and simple acts.
Truly matter after all ❤️.

Maybe not today. Maybe not to tomorrow.
But some day. everything will
Finally feel ok❤️.

#smileon 🐷 #thekindnessrocksproject #sickchickstrong #peoplehopetribe #memberofthechurchofjesuschristoflatterdaysaints