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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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smileon 5y

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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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MightyPoets 5y

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Lab Rat. #MightyPoets

Just one more pill and it could all be fine .. Try this new pill.. it will work this time.

I nod my head. I say ok.
I take the pill, and with a swallow obey.

Just to be honest:
I don’t have a clue.
But maybe one more test will show us what to do.

With a million thoughts running through my brain.

I roll up my sleeve so they can find a vein
A rotating cast of
White coats and needles
Scrubs, and scans.

A thousand different pieces.
But no clear picture, no clear plan
I feel my body, struggle and decay.
I try to be a good patient. I try to obey.

I take every pill, lay still for every scan.
Follow every regime protocol and plan.

I try to be the perfect patient.

Yet here I am.

I try to remember what the doctors who care have taught me.

That my health is their job.
But at the end of the day..
It’s my body.
Some will see me, as a name on a chart.
And leave it at that
I may be constantly Tested. Poked, and prodded.
But I’m much more than a Lab Rat. ( picture from @morethansick ). @smileon🐷 #MightyPoets #Spoonie #labrat #ChronicIllness #sickchickstrong

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smileon 5y

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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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smileon 5y

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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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smileon 5y

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

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smileon 6y

#smileon 🐷 #thekindnessrocksproject #sickchickstrong #peoplehopetribe #memberofthechurchofjesuschristoflatterdaysaints

#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❤️.

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