I remember it all as clear as day. The fear, the anxiety, the questions. I had just been diagnosed with a disease I had never heard of and here I was left stunned, and with a million questions. The song “Just Be Held” by Casting Crowns had just come out, and it just wrecked me. “Hold it all together, everybody needs you strong. But life hits you out of nowhere and barely leaves you holding on….” Yes that encapsulated my last few months and recent diagnosis. I was rocked, off my feet and I thought my life, as I knew it was over. In some ways, I was right.
As a mom to five kids, I guess I thought I was golden. God gave me these little people so that I could raise them, and be there to show them how much God loves them. But when I was diagnosed with a disease that could potentially kill me, I was floored. I just didn’t see why I was given such a tremendous responsibility if I wasn’t meant to see it through. I think it’s normal for most people to get a diagnosis and jump right to the bad stuff. What does this mean? Is it deadly? And then when you begin to Google and see the horror stories out there, you just feel completely defeated. That was me!
I got sick in August/September with a bad sore throat, horrific cough that caused me to pull several ribs, no energy and a tight chest. I had just started a new school year (homeschooling) and I figured well, this happens to me… I get sick with a cough, it always lasts a few months (ridiculous, but I just thought that was normal), and then I’ll eventually get better. But this time I didn’t get better. That cough lasted and lasted. After 6 weeks of coughing harder then I ever had before, I decided to go to the walk-in clinic to see if they could give me something to feel better. They didn’t.
After being misdiagnosed with bronchitis and sent on my way with a 5 day Z-pack, and then later a dose of prednisone (neither of which helped), I ended up at my kids naturopath getting bloodwork (he insisted on it). I got a call from his office that I was being referred to a hematologist/oncologist because I had a severe mycoplasma pneumoniae infection. At this point, I felt like everyone was failing me. I didn’t need a hematologist…my goodness I don’t have cancer, or a blood disorder. But after much anxiety, fear and doubt, I went to the appointment, (against my better judgement), and my whole life hasn’t been the same since.
I sat there, nervous, in his office, with sweating palms and feeling like a fool for wasting his time, when he turns to me and says, “You have the worst case of mycoplasma pneumoniae I have ever seen. I’m 47 years old, and worked at the Mayo clinic for years.”
I knew then, that yes, I was sick and thank God someone was finally helping me! But then the conversation switched when he told me that we need to figure out why a seemingly healthy thirty year old woman, can’t fight this off and get well. After a few more tests, his suspicions were confirmed. I was diagnosed with hypogammaglobulinemia (CVID or Common Variable Immunodeficiency).
I. Was. Rocked.
I began to read about the possible outcomes of CVID and it wasn’t good. People like me are born with an immune system that doesn’t function well, and lacks a memory. While vaccines and virus exposure may work for some people to build antibodies, it doesn’t do much for those of us with CVID. Autoimmune diseases (any you can think of), cancer and permanent organ damage from repeat infections was what stuck with me as my future. As my possible demise! I thought, how in the world can I take care of my kids when I’m going to slowly fall apart, or worse, get cancer and die!?! I went through what I can classify as nothing else but a mourning period for approximately nine months. I wept over the what was, what might be and the why me’s kept coming.
But in all of my hurt, my fear and my physical pain, God met me right where I was, and I felt a longing for Him like I have never experienced before.
My new normal involves monthly doctor appointments, IV’s and bloodwork. It’s been fifteen months since I got sick, and I’m still sick with the mycoplasma, but it’s getting better. I’m currently in the process of switching from monthly IVIG (IV immunoglobulin from hundreds of donors) to a subcutaneous version I’ll do once a week at home. My normal isn’t normal to me. I am not a sick person, and adjusting from a very capable, always on the go mom of five, to a sick mom that has to say no to everything has been so abnormal.
Being sick has taught me to treasure the little things, to simplify my life as much as possible and to keep in perspective that life is short, and we are all (short of God returning soon) going to die. It’s been both a freeing and eye opening experience. Trying to be mom, and homeschooling while chronically ill, is quite possibly the toughest thing I’ve ever had to do. But where there is hurt, there is healing. And where there is dark, He brings light. When you get sick, you find out really quickly who your friends are. And I have been blessed by prayers, notes of encouragement, and shoulders to cry on. God really can work all things for good….even CVID.