Life as a Mother With a Primary Immunodeficiency
“I don’t know why I can’t get this IV,” the emergency room nurse said last Saturday after trying for the third time to start an IV. “I just stuck a 98-year-old across the hall and you’re the young and healthy one.”
Since I have what we call an invisible illness at 35 years old, which is a primary immunodeficiency disorder (PI) where my IGG and IGA levels are deficient, this is a common thing to hear.
“Actually I’m not that healthy,” I respond and explain that I have a PI and am chronically dehydrated as a symptom. She looks confused and I realize I have once again educated a medical professional on my disorder, which is not only absurd, but scary, because it means they do not understand how to treat it. Doctors have usually at least heard of the disorder; however, I once had a young doctor say after having a blood test ordered to once again confirm that I have a PI, “I’ve never seen this before, except in one other patient of mine and he doesn’t have a spleen!” He said this much too excitedly, as if it was “fun” to him – like getting to see a science experiment come to life. Only I’m a human being, a college professor and, most importantly, a mother of three kids.
Obviously I have a bunch of specialists who do know what PIs are. On my own roster I have an immunologist and allergist for my chemical allergies that result in deadly reactions, a pulmonologist for my severe asthma, a urologist as I have kidney disease in my bum right kidney, an orthopedic specialist for surgeries to deal with the complications from my early onset osteoarthritis throughout my body and I go to the cancer center one to four times a month for fluid infusions for said chronic dehydration.
These are all just symptoms of the overall issue of having a PI. A doctor once said, “There is no cure for this – we can only treat the symptoms.” You know how there are statements said to you in your life that stick with you and repeat in your head at the worst times? That is one of mine. Especially as my symptoms have begun to take over. In the last year I have had three surgeries, two other extended hospital stays, one ambulance ride, five emergency room visits and countless doctor visits, illnesses, injuries and bad healthy days. These are all separate incidents resulting in the longest stint between illnesses being a month and a half but often only being three weeks.
These keep me from doing my job as a college professor, from hanging out with friends, from family events and most importantly from taking good care of my kids all of the time. Oh, I take care of them with every ounce of energy I can manage, but sometimes I physically cannot move. Those days…those days hurt me inside. I have to hear, “Mommy is sick again?” They worry. They are 9, 5 and 4, and they are perfect. They are my hearts walking around outside of my body. It took a ton of my body, my health and my energy to be able to barely bring these babies into the world due to my PI, but they are worth everything.
So now, on days like today, where I was just released from the hospital after a long stay and I cannot go to Track and Field Day, or the pre-k play tonight, or my son’s Boy Scout Derby, I look at the photos sent to me from my amazing superhero mom who takes them to all of these things, and I see the photos other parents post on Facebook. It breaks my heart that I cannot be there, but I try so hard to be thankful that I am still here and I get to hug them when they come home and run into my room. Their little faces look worried for a second when they ask, “Are you feeling better yet, Mommy?” They are too little to know this will always be this way – some good days, a lot bad, but that is fine. I want them to be “too little” as long as they can. I answer, “Yep! I am feeling better.” Their faces light up and they run off to play and I take more medicine that makes me feel sick and try to rest some more and hope tomorrow I can get up and go with them.
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