Rare Disease Day

Today I was asked “What advice I’d give myself .” In an attempt to look outward at the catastrophe which is my current medical situation. ( and honestly many with rare diseases have probably faced a similar cruel reality )

But my thought was ..

How do you save someone when the shark has already attacked?

When the blood has oozed
When the pieces of you are already gone .

When the damage is already irreversibly done .

After moments which felt like hours of pondering

I think my advice would be

There is no shame in healing
In letting yourself lean on others
In putting in. ALLL your effort , to seemingly just being able to maintain pace

I think those of us, who have experienced what it’s like to in some way to feel try “broken “
Try to hide the pain we go through daily so we don’t spread that pain to others

But we forget to realize the beauty in the fact that after it all .

We are still trying .
Broken , bloody , bruised, scared , maimed… We are still trying.

We haven’t let the darkness win

Today is #RareDiseaseDay .
Something I’ve posted about all month .

Something you have definitely seen my struggles with these past couple of weeks .

Rare disease has grabbed my life and thrown it upside down .
It’s changed every piece of me
Mentally , physically , spiritually, emotionally .

I pray …. and deep down I know all those changes are for the better .

So here is to the fighters , the survivors, the ones searching for a diagnosis, the ones we have lost , the ones searching for their place in a world where you will “ never get better “

Keep going . Your doing so much better and you are so much stronger than you think you are .
I promise you , that in the most unlikely places . You will find hope .
But you have to keep moving forward ❤️ no matter how slow the pace

#smileon🐷 #spoonie #RareDisease #showusyourstripes #RareDiseaseDay #nord #careaboutrare #cvidawareness #gastroparesis #itp #uctd #dfsp #keepgoing #faith #trauma #mentalhealthmatters #chronicpain

Celebrating all my fellow rare disease spoonies out there! We're rare, but not forgotten! #RareDiseaseDay #InvisibleIllness #spoonielife #chronicillnesslife

Today is a big day! I know that there are so many of us that struggle with rare diseases! What are you doing today to celebrate?

Tonight I will be painting with a couple close chronic pain friends, and sharing how our rare diseases have made us stronger <3

In honor of Rare Disease Day, Mike Porath, Founder and CEO of The Mighty, Carli, a 26-year old woman living with fibrodysplasia ossificans progressiva (FOP), and Jeanine, a woman in her 50s living with primary biliary cholangitis (PBC), will dive into a live discussion speaking to their personal experiences related to the social and emotional impacts of rare disease on their lives.

Be sure to tune into this discussion on navigating the ins and outs of life, relationships, and rare disease from three experienced advocates by signing up here:

Sponsored by Ipsen.

#RareDisease #FibrodysplasiaOssificansProgressiva #PrimaryBiliaryCholangitis #RareDiseaseDay

In honor of Rare Disease Day, Mike Porath, Founder and CEO of The Mighty, Carli, a 26-year old woman living with fibrodysplasia ossificans progressiva (FOP), and Jeanine, a woman in her 50s living with primary biliary cholangitis (PBC), will dive into a live discussion speaking to their personal experiences related to the social and emotional impacts of rare disease on their lives.

Be sure to tune into this discussion on navigating the ins and outs of life, relationships, and rare disease from three experienced advocates by signing up here:

Sponsored by Ipsen.

#RareDisease #FibrodysplasiaOssificansProgressiva #PrimaryBiliaryCholangitis #RareDiseaseDay

February is here, and for many of us in the rare space, this is a time we acknowledge #RareDiseaseDay on February 28. We also celebrate throughout the month by sharing stories, stats and information regarding #RareDiseases . For myself, I decided to take some time and write a poem in honor of the day and month. A lot of emotions come up during months like these.

I Am Rare

I am part of the rare disease space,
Always trying to come through with strength and grace.
Sometimes my plight can feel overwhelming,
But I keep on striving and believing.

It has been a journey that can be hard,
With many obstacles to guard.
I know I am not alone in this,
There are many just like me on this list.

Working hard to achieve all that I hope for,
Knowing not all is in my actual grasp to my core.
Still being hopeful that someday I will be proven wrong,
No matter what head up, eyes fixed, will strong.

There are moments both filled with joy and grief,
It is very important to me to have a positive belief.
My courage will forever guide me, I will never give up,
I am proud to be rare and I will always rise up.

#RareDiseaseDay2023 #rarediseaseawareness

To quote the absolute legend which is Albus Dumbledore
« ⚡️ 🦉 🧙‍♂️ It is our choices...that show what we truly are, far more than our abilities. «

And on this #RareDiseaseDay and through out this whole month .
I’ve taken time to DEEPLY admire the courage it takes to survive the unimaginable ❤️🦓.

Rare disease takes you , and throws you in the deep end of a pool of when you never thought you needed to learn how to swim .
Enlist you in a war you never signed up for .

Once it comes into your life ,
It changes EVERYTHING .

And I use to think continuing to go forward , wasn’t a sign of bravery .. but a means of survival.

Until I had the realization that .
Some people don’t choose to go forward .

Some get thrown in the deep end and let the water consume them .

But if you are still fighting .
If you are trying your hardest to stay .
If you are paddling and paddling in the deepest and darkest of waters
, even when it feels like you aren’t moving anywhere .

That is an act of bravery .
Continuing .. continuing despite everything against you . Fighting to survive against the impossible ans unavoidable may be one of the bravest things you can do .

Never forget just how magic 🪄 you are ❤️🦉.

Btw how AMAZING is this shirt I had a friend custom make for me ?! 😍 I’m OBSESSED.
#smileon🐷 #spoonie #chronicillnes #cvid #ivig #RareDiseaseDay #rarediseaseawareness #zebra #nord #harrypotter #wegowarrior #themighty #patientadvocate #uctd #gastroparesis #autoimmunewarrior #supplimentaloxygen