CVID

Something illness related I had to learn this year was to swallow my pride and use mobility aids .

I use to RELISH in the fact my illness was invisible.

I flat out lied about it to friends and family for YEARS and when the news of my illness was ( for lack of a better word ) “leaked . I had immense pride when people thought I was “ faking it “

But as I’ve gotten sicker .
It’s gotten impossible to hide .

For 4 years I’ve had to use supplimental oxygen.
Since Oct when I’m out and about I’ve been reliant on a walker .

And it’s so , emotionally difficult.

It got to the point where I realized I walked looking down . I didn’t check out the cute guy , because “ who the heck would be checking out the girl
Who looks like she is dying “

And then when you add the pity stares , and the completely Inappropriate comments

( like can we make it a rule of thumb to not ask strangers their life expectancy , or tell them how to fix their health )

Sometimes I’ve just wanted to crawl in a hole .

But when I realized the walker was going to be a longer term thing than expected. I made a goal to keep my head high every time I walk it with it ,

When kid give me questioning looks , I wave hi to them and give them the biggest smile I can.

And when I get comments from others talking about themselves with their kid / friend / spouse with oxygen or mobility aids .

And or comments online about how seeing me out and about helped someone feel confident leaving their house with their oxygen or walker .

It means everything. .

I’ll admit it , I’m vain .
I love hair , I love fashion I love makeup . ( I actually really enjoy getting ready )

I love that I’m 6”1 with giant lips and big green cat eyes .

And I a lot of days I deeply struggle with what illness has done to my appearance

But I’m so grateful that illness has taught me that I’m so much more than what’s on the outside ❤️

Through this year of ups and downs , what’s something rare disease / chronic illness has taught you ? #RareDisease #CVID #Epilepsy #MCAS #AutoimmuneDisease #Spoonie .

“ You can do ANYTHING but you can’t do EVERYTHING “

my 9 year old niece said with a smile ..

I smiled and asked her how she got so smart ,

And she beamed and she replied

“ My teacher taught me this ! “

( insert digital high five to her teacher here )

This is something I constantly struggle with

But I feel like I’ve been struggling with even more lately .

As you know I have a highly active highly motivated mind ,
Shoved into a body that simply doesn’t work , and likes to plot my murder .

For me it always seems like im striving and dreaming of doing more .

When my health is in a decline .

They say “ You have to rest to heal “

And I guess for me , that part .. the rest , the “doing less “ when some days you feel like you can’t do anything at all , almost makes healing hurt in more ways than one .

But I’m going to remember that I can’t do everything .
But I can to hold on to the simple things .

Like a good book , a perfect niece , and a moment of peace in the chaos

My goal is to strive for more moments like this .

#smileon🐷 #ChronicIllness #read #thoughts #rambles #johngreen #dreams #aspirations #keepgoing #RareDisease #healthdecline #CVID #Epilepsy

#ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #ChronicIllness #CVID #CommonVariableImmuneDeficiency #RareDisease #RareDiseaseMonth #InvisibleIllness #piawareness #zebrastrong #Spoonie #spooniesupport #spoonielife #disabilityawareness #Sarcoidosis #PulmonarySarc #NeuroSarc #Anxiety #PTSD

I was in the most pain I had ever been in my life , high as a kite , in clinical , sterile , terrifying ICU .
When I learned the world continued to spin , even when I wasn’t really a part of it ,

And believe me , that is a heartbreaking , terrifying and eye opening thing to learn when you are 17 .

But heck . Getting half your liver removed will teach you a lot of things .

I remember after one night in particular, the roughest night I had ever had an honestly felt shocked I survived . I had this darkness come over me .
Like every good and happy thought about my life had completely vanished .

And I came to the conclusion that to stay sane . I would find one good thing in every day .

Even if it just was that “ The nurse had really cute hair “
Or “ I was in a bit less pain than yesterday “ or “. I only puked 5 times today instead of 10 “

And “ finding that good “ is a little tool I’ve used almost every day sense .

On my worst days. I’ll try to find the good . Even one ounce of good.
Whether it be a sunflower growing outside , a really yummy sandwich . the sunset , someone opening a door for me . or someone who has an insanely good laugh .
And I’ll hold onto that good like it’s a life preserver in the midst of a tsunami.

But this silly little “life hack “
Has taught me one thing .
That the quote is true that “ Where there is good , there is God”

HE is the one who paints the sky every night .
He made the field of flowers , he personally designed that sunflower growing across the road , and I bet he knew it would make me smile .

His love can be found in random unnecessary but amazing acts of kindness.

The purpose he gave us to “have joy “. Can even be found in a incredible laugh that lights up the room.

When I find myself complaining that “ life is hard “
Or “ God must not hear my prayers.because I’ve never gotten my miracle “

I forget that he gives us a million little miracles each and every day .
We just have to take the time to see them.

I don’t believe that happiness , true happiness is the result of “ everything going right”
But true happiness comes when your grateful to God for everything you have ❤️.

And believe me . This is something I am FAR from perfect at applying in my own life .
But as happiness seemed to be the theme of the talks at church today .

And with how hard the past couple of days have been .
It was just this beautiful little reminder of all the amazing things God has given me ❤️

#smileon🐷 #spoonie #faith #christianblogger #thechurchofjesuschristoflatterdaysaints #CVID #UCTD #Tumor #autoimmune

And with that picture . In a little way I felt like I was there ..

I seriously have the greatest friends . Do to severe GI symptoms I had to miss out on my friends “ Gothic Plant “ themed birthday party I’ve been looking forward to for months

And All night I was getting pictures of the party on our group chat .

My friend made me one of the
“ grave yard terrariums “
( on her birthday! 🥺❤️❤️ )
And yes my tombstone is yellow , sparkly and covered in unicorns 😂❤️. My real tombstone ( when I’m 90 ) better be this cool . 😂❤️

They sent me a pic of my graveyard 🪦 . ( which was delivered to me by an amazing friend who lives close )

And then they sent a pic of my graveyard . With everyone else’s .

And my little poetic heart kind of burst 🥺❤️.

Because being chronically ill .
Your constantly canceling plans you don’t want to cancel . And constantly feeling like the worst friend ever .

And I’ll be honest through my life ( Especially when I was “dying “ in high-school .
id try not to get to close to people ( which is hard when you are a raging extrovert who thrives off of human connection . )

Because I didn’t want to be a disappointment.

My warped thinking was. ( and I have to admit sometimes still is )

You can’t be mad your friend canceled on an activity if you didn’t really care if they were there in the first place 🤷🏼‍♀️.

But that little act , of having my terrarium in the photo .
In a little way it felt like I was there …
If only in spirit. ❤️

I seriously have the most loyal friends in the entire world .

#smileon🐷 #spoonie #Friends #selfworth #ChronicIllness #spoonie #beafriend #loyal #christianblogger #graveyard #greatestfriendsever #MightyTogether #CVID #RareDisease #UCTD #connectivetissue #warrior

Hey Mighy Fam ! Long time no type ( litterally!). A mixture of my #CVID #UCTD . And apparently undiagnosable lung disease has ROYALLY Knocked me on my butt .

I was hospitalized about 2 weeks ago due to a lung infection and lung flare and it still feels like my body is MAJORLY recovering ❤️‍🩹 .

I’m also trying to figure out ALOT of things with my medical team
Right now . The belief is that the scaring / cyst in my lungs are caused by an infectious or inflammatory process . But of course no doctors are agreeing .

And it’s just a big pile of #Ugh !
#RareDisease life am I right ?! Ive honestly been struggling with a bit of #Depression . Not in a chronic sense . But in a “ man my situation REALLY sucks sense .” So I’m
Just doing all I can to keep my head above water

Today was one of my most productive days in a while !

I washed the dog , played my Uke and sang for the first time in weeks ( even though breathing has been so hard. My oxygen needs have been a bit more . And well I’m
Crappy at wearing my #Oxygen .. so I’m my own worst enemy in that department 😅)

And I just submitted a new article to the mighty about #CVID #PrimaryImmunodeficiency So 🤞🏻🤞🏻 it will be published and you all
Will read it soon!

So today definitely a #babystep
And I have an appointment with my councilor tomorrow to continue to work to get in a better headspace

But I have a goal to be more active on here ! I have missed you all !! ❤️❤️❤️. #StrongerTogether

This time it’s been rough! Easiest way to put it. So now our good old pal lupus has decided to attack my bladder and it has been a spiral of craziness. It’s been 4 months since we have started treating the Lupus Cystitis with Chemo and higher doses of Prednisone 🥵 and it is takin a toll on me mentally and physically. I feel like the doctors are just kinda blindly treating me due to never actually treating a patient with it. MY BLADDER HURTS, STINGS,BURN, and ACHES all day long even more when going. After seeing how bad my bladder is they were gonna do a biopsy but decided it to big of a risk with it being so fragile so no biopsy but we do know it’s extremely inflamed and causing lots of pain on top of other things. I’ve had two hospital stays in back to back months a week and the other a week an a couple of days trying to control pain. Moon face is real( see above pic) I’ve gained so much weight and it’s only making things in life more hard then usual but it’s time to pull up my big girl undies and do what I gotta do #Lupus #warrior #LupusWarriors #sickandtired #CVID #LUPUSCycstits #tired #GottaKeepOnMovin #ItsOkNotToBeOk #HBP #SystemicLupusErythematosus #KidneyDisease #GERD #Fibromyalgia #Asthma #RaynaudsPhenomenon #BloodClots #ChronicBloodClots