Dear Exhausted Mom Living with Primary Immunodeficiency Disease (PI),
I know how you feel.
You are tired.
Our worlds may feel and look similar, but I’m not living with primary immunodeficiency disease AND trying to raise a family. And I don’t know how you do it.
Tired of waking up every morning and wanting to hit the snooze button.
Lying there in bed thinking of the cause and effect of 10 more minutes and the ensuing chaos if you were to sleep late.
Tired of hearing the, “I want pancakes for breakfast, mommy.”
And all you have time for is an Eggo, a Yahoo, and maybe a banana (gotta squeeze in something healthy to eat).
Tired of giving your children 1,426,539 reminders to brush their teeth and put their shoes on.
And even after all those reminders, it’s still a mad dash for the bus stop.
Tired of the worksheets, homework, and projects from school.
Trying to be encouraging and patient through the endless school assignments when all you want to do is throw it all in the trash and read a book to your child.
Tired of being tired.
Mom, I feel you.
Moms don’t have time to get sick.
Even if there’s a partner to help, it’s still not mom.
There’s way too much to do, and there isn’t some magical pause button.
So, what happens?
You press on.
Your primary immunodeficiency disease makes up a group of more than 250 rare, chronic disorders that involve the body’s immune system being disabled or working improperly.
It’s very likely that your doctor or health care provider (HCP) may overlook your symptoms and miss the underlying problem.
But, you press on.
You are highly susceptible to infections with your skin, respiratory system, and/or your ears.
Yet still, you press on.
Be careful, mom, and learn from the experience of Angela Van Batavia.
Angela, a mother raising three children, suffered for three years before her doctor finally diagnosed her with primary immunodeficiency.
Brian, Angela’s husband, shares, “Being diagnosed with something was not a relief; the relief came once I knew they could do something about it.”
The full story of Angela and her recovery after her final diagnosis is a must read for anyone who feels like her when she states, “If you’re not feeling good, listen to your body.”
A mother’s intuition is rarely off the mark, so if something feels like it is wrong, it’s probably wrong.
Please, mom, look for the warning signs and monitor your own health.
Take care of yourself, mom.