My Dermatomyositis began presenting itself with the conception of my first son in 2015. The angry, red skin. The constant burning, stinging sensation. A truly happy time dampened by a confusing change in my body. No doctor could help or offer me anything other than “pregnancy causes the body to do all kinds of crazy things. Just be glad you don’t have morning sickness.”
Fast forward to 2017, little man #2 will be joining us, and within two weeks my face goes bonkers again. Utter exhaustion and defeat. A happy time, yet again stolen by this mysterious and drastic change of my body. Finally, after going from doctor to doctor and getting cookie cutter answers, I finally meet one who digs and digs and ultimately helps me solve this mystery.
“Emily, you have Dermatomyositis.”
Just hearing those words made my heart leap out of my chest knowing:
IT HAS A NAME.
I AM NOT CRAZY.
I know what it is and my gratitude will forever be boundless for this doctor for ending this four year cloud of confusion.
My skin feels more under control now. My muscles, however, seem to slowly, ever-so-slowly, weaken, and certain things are harder….just not how they used to be.
My sons are 10 months and 3 years old. All I ask is I make it to the age where they do not need to be held. Where they are too cool for mom. Don’t let this disease take from me the joy and utter bliss of holding my baby. Scooping up my boys and smelling their sweet scent and holding their velvety cheeks against mine. Don’t take my celebratory hugs when my oldest nails his swing at Tee-ball. Don’t even think of taking their chubby little hands out of mine. Not Yet. It’s a constant prayer in the back of my head. Don’t take my children from my arms.
So here I wait….and pray….and smile because I am grateful to be here and live this life, no matter what gets thrown my way. We play the cards we are dealt and I’m gonna play the heck out of my hand.
I know exactly how you feel! I also flared badly after my pregnancies in 2015 and 2017. It’s so hard to imagine not being able to be strong enough for the kids but fight every day to try to show up for them! Would love to connect with you. I’ve met other wonderful young moms with DM as well on instagram. My handle is erinemore 🙂
Prayers that your current medical team can now get things at least stabilized for you.