IVIG

The “ Trolley Problem “ has been on my mind all day today …

It’s probably because , As I should have predicted yesterday’s infusion of 4mg of IV Copper ( instead of my usual 2mgs ) to treat my dangerously low copper levels that just won’t seem to rise .

Has not been my friend 🤢.

I’m one who hates to be still . But Ive spent all day in my bed sleeping or watching tv .

As I’ve been nauseous , felt like my throat and entire body has been attacked by sand gnats , I’ve had body aches beyond control , and exhaustion belief .

My nerdy little brain has been thinking over and over abb“ The Trolley problem “

If you don’t know what that is Wikipedia states that

“ The trolley problem is a series of thought experiments in ethicsand psychology, involving stylized ethical dilemmas of whether to sacrifice one person to save a larger number.”

I thought of how relates with some of the treatments I’ve had

With the big car being my future . Then current me would be tied to the tracks , completely and utterly being held against my will .

When I first started oral chemo ( for my connective tissue disease ). , my hair started falling out and my head rarely left the inside of a toilet .

My IVIG I need to stay alive due to my CVID has tried to kill me multiple times , and still tries to ,
( It causes anaphylactic reactions thanks to my Mast Cell Activation Syndrome )

And the reaction I’m having to copper on this higher dose is everything an IVIG reaction minus the part where my throat closes off ( thank goodness )

Often it feels like I’ve had to a sacrifice what I want my life to be , So that big train can drive through

Sometimes we have to sacrifice the comfort and convenience we CRAVE now ( often leaving us feeling like we got hit by a train )
So big beautiful things can “arrive “ to our future

And in my case , so I can have a future at all .

So here is to suffering , that leads us to a big beautiful someday

Keep going ❤️

#RareDisease #copperdeficency #Infusion #MastCellActivationDisorder #CommonVariableImmuneDeficiency #MixedConnectiveTissueDiseaseMCTD #IVIG

Hi, my name is DeadStar. I’m here because

#MightyTogether #ChronicIllness #ChronicPain #ChronicFatigue #RareDisease #InvisibleIllness #Disability #DisabilityInclusion #DisabilityRights #piawareness #PrimaryImmunodeficiency #CommonVariableImmuneDeficiency #zebrastrong #IVIG ##Spoonie #spooniesupport #Arthritis #ComplexPosttraumaticStressDisorder #Comorbidities #Anxiety #Agoraphobia

This is my way of giving back to the rare disease community. 💞
dearwarriors.com

Hey Mighty Fam! #MightyTogether

Long time no type! So as the worlds been ending. My body has been falling apart ( what’s new lol! 😅). Between managing my #UndifferentiatedConnectiveTissueDisease ( UCTD ) , my #CVID , and getting use to life on #IVIG . ( holy cow us sick folks use a lot of acronyms! 😂). A tumor that has been causing pain in my upper thigh for about a year. Decided to become utterly exrusiating. And having a history of #Sarcoma ( DFSP). You can imagine the emotional rollercoaster this sucker has taken me on. My sarcoma doc refused to remove it because it “shouldn’t hurt “ . But after getting horribly misdiagnosed from my “second opinon surgeon” and being sent up to him. He FINALLY agreed to do the dang surgery ! So I’m getting this bad boy cut out on Wednesday. But my body is prone to complications.. and because of #COVID19 my #Caretaker has to stay in the car in the cancer center parking lot. And I will .. for the first time EVER be “ flying solo” for surgery 😳. ( gulp!). So life has been crazy but you .. my mighty family are always on my mind! I hope to share another article.. and more thoughts with you soon! ❤️❤️

I’m now presumed positive for #COVID19 as my symptoms hit all the criteria and my swabs were sent in today. Dr said it could take over a week and in the mean time I will like continue to get increasingly more sick... so fun.
I thought I was so cautious. I’m just terrified. Luckily still at home as I have a home nebulizer and inhalers. I live 2 mins from my hospital. Being immunosuppressed im safer here unless I really can’t breathe.
We also decided to reschedule our wedding so we’re spreading that news. Such a sad mess.
Hope others are staying healthy.
#RheumatoidArthritis #Asthma #Depression #BorderlinePersonalityDisorder #immunosuppressed #IVIG #COVID19

Little kid conversations at the park today

“ I’m beach boy.. so I can turn into any animal that is green.. like a polar bear! “

- listening to a boy dressed as black panther and a boy who claims to be Thanos discussing who truly has all the stones 😂

- Watching my 4 year old niece flirt shamelessly with 6 year old black panther 😂

Girl causally yells from the playground “ Mom .. I ate Popcorn !”

My 3 year old niece
“ I want to race a boy!”

3 minutes later. Slides down slide with a boy she just met. And excitedly exclaims

“ He is my BEST friend!”

I once again feel like I’m getting a cold. ( but I’ve decided that feeling is just going to keep recycling till the #IVIG kicks in fully )

My body aches. I felt like I needed a nap after taking a bath and doing a batch of laundry.
I just physically don’t feel good

But today here I am once again.
Soaking up the Sun like a lizard . In a way hoping the vitamin C might magically cure me. . Well atleast cure my spring fever 😂

I’m so glad more sunshine is going to bring more days like this.

It’s weird having a mind that’s so active. But a body that’s so.. not.

Today mentally I wanted to literally do handstands in the sun.

But then had to limp and struggle and was downright exhausted basically faking to “run” a round of “ Red light .. Green Light “ with my nieces.

Some days the reality hits you that it’s weird being this young and feeling this old.

But if my body has taught me anything. It’s compromise.

When you can’t run.
Be the one who yells “ RED LIGHT “
“ Green Light “! Yellow light!”
In a way that makes your nieces errupt with laughter.

When you can’t be the one who runs around and plays.

You can sit in the cave 😂.
Have very mysterious blue woodchips piled on top of you.

And gratefully have your sister help you out of the cave.
When you realize you are 6”1 with a bum leg. And that entrance to the cave is WAY to close to the ground 😂

I guess today was one of those reminders that .. Life isn’t going to be the way you pictured it.
But you can still make that picture beautiful ❤️

🐷

Now I can tell you all the big exciting thing!

MY IVIG WAS APPROVED BY MY INSURANCE!!!!
( insert angel chorus here!)

And pending one more approval thing that could possibly mess it up. It is scheduled for NEXT WEDNESDAY!

You could possibly wonder
“ How did the heavens litterally open, ( when Megan’s insurance sucks so bad,) and a super expensive treatment was approved .”

And the answer is .. someone my long time “readers “ may remember.

My insurance “ angel “ Dr. L .

You know the one who got the Mayo Clinic . And basically every treatment there approved for me.

I never wanted to bug him again after all he did for me.
But when I got a mychart from my immunology office. Stating a big long appeal process was starting.

I had a feeling I should call Dr. L.

Just to see if he still worked there.

And surprisingly he did.

I left a message on his machine basically stating the whole situation starting with..

“ Hey. Remember me from like 4 years ago.. and how you basically saved my life.. how would feel about doing that again ?”

“I promise if you help me I won’t call for at-least another 4 years 😂😂.. well atleast I’ll try not to “

Let’s just say He got my message..

Then being the angel he is..

Reviewed my charts
Then went and personally talked to the pharmacy department of my
Insurance agency’s.

Called me back, and told me not to even worry because I need this treatment and he got it approved.

He also told me he was STOKED to hear from me , and to call for his help ANY time. And just to sometimes call him and tell him how I’m doing.

( I told you.. he is the GREATEST human being that has ever worked in a medical insurance place)

During a hard time, I was once again sent an Angel .

(I can’t explain how grateful I am for Dr, L. And just my incredible immunology office. )

And once again, I’m feeling hope trickle into my veins.. and I’m unsure of what to do with it . 😂❤️.

Did you know IVIG is suppose to work similar in your body to a corticosteroid... aka the treatment that’s currently keeping me alive ?
And is suppose to be way less dangerous .

🐷 #CVID #IVIG