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The REALITY of IVIG and A New Normal

Yesterday I had my monthly IVIG infusion for a rare primary immune deficiency. IVIG is like a blood transfusion, except it isn’t blood… it’s concentrated human antibodies from 20,000 or more people in a glass bottle slowly dripped into an IV line. It’s a miracle treatment, but it’s also extremely difficult.

Thus I’ll offer a disclaimer…I don’t feel good today. My body is totally flattened, skin feels like it’s on fire, stomach nauseated, and it’s painfully difficult to drink the water I must drink to stay hydrated after taking in IVIG therapy. However, this is REALITY – and it’s worth posting, even if it isn’t my best writing.

Life isn’t picture perfect. The rain outside my window is welcome as it washed away the muck that’s collected in the duck run, yet it’s damp in this old growth forest where I live – nonduality.

I’m adapting to a new normal again, something I’ve done more times than I can count in the last 15 years. I thought I was done with IVIG 2 years ago, only to learn that I have this very rare immune deficiency…. so here we go again.

Friday was rough. Because the infusion can cause anaphylaxis and headaches worse than migraines, there are lots of special meds given before they even run the actual IVIG. Still I felt the uniquely awful headache starting early in the process, so it was 100mg solumedrol directly into my IV immediately.

Immediately my blood sugar went over 200 and primal food cravings set in for the next 24 hours. Hijacked by prednisone is never fun. Today I still feel the after effects, but it’s better than the emergency room. It it always scary to feel my body go wonky.

I’m writing all of this to say that everyone has a different path during the pandemic. In my case, I’m healing my body slowly and carefully. I’ve been in quarantine for over a year now. The first 9 months was spent building stamina, healing my adrenals and getting off of meds that I’ve needed since my last health crisis.

Then, after fracturing my leg twice, it was time to begin the next part of my journey – I’ve almost completely reversed the diabetes, I’m 30% to my 100 pound weight loss goal, and I’m rebuilding my immune system. Note that the weight and diabetes were a direct result of prednisone in 2017… it’s a tough thing to need a medicine and to have it cause harm too.

The healing path isn’t easy, and few people understand. Because of this rare deficiency during covid-19, I’m still not allowed to leave my home other than doctor visits, even if I get vaccinated. I am a single mom, minister/artist, with a mini farm that I love.

Like everyone, I want to live a “normal” life …. but this last year has taught me to question normalcy. What does that word actually mean and who does it benefit? I’ve come to realize it’s a term of exclusion.

“When are you going to be back to normal?” Harsh words spoken to me more times than I can count since the life changing and ultimately life affirming concussion exactly 10 years ago.

“When are we going back to normal?” To the families who have lost loved ones due to COVID-19… the longhaulers whose lives are changed… the front line workers whose lives have been on the line… the parents who have lost children…. those collectively traumatized by painful events too numerous to mention …there is no normal. My heart breaks at the callous hive mind that fantasizes about normalcy while ignoring those who continue to suffer among us.

As I watch the world try to just move on … I can’t help but think of all of us who aren’t going back to “normal” … No, we’re either living in a new normal, or grieving a normal that can never be again… either way, there’s healing to be done.

I’m a Contemplative. So as I sit and integrate the antibodies of thousands of people that make IVIG possible, I notice my connection to everyone else in this world and I have hope that we can transcend this tendency toward “back to normal” thinking – and lean into something new. 💙


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