My Story

Becoming the CVIDiva

Just like a superhero, I thought I could be a Super Mom!

Before 2017, if you saw me shopping at my local Walmart, you’d never know I’d soon be on my way to becoming the CVIDiva! You’d have seen just your average, middle-aged, stressed out mom in all her yoga-pant-clad glory dragging two young and disgruntled boys up and down the aisles hurling items into the cart so I could rush back to my home office and my work as a full-time saleswoman. (I have a husband of 14 years, but he makes it a common practice not to frequent Walmart!)

Such was a sweet, sweet life though I didn’t fully appreciate it at the time…because then I got sick. REAL SICK. I mean, the I-can’t-get-out-of-bed-and-I-don’t-know-why-kind-of-SICK. (Hooked ya, huh?)

I Have CVID

The short version is I had to leave my job of almost 10 years, start IVIG treatments every three weeks, and make some major lifestyle changes that I’m honestly still working on and not all that happy about.

You know what though, I thank God everyday (in-between slamming my “Damn-it Doll” to death on the kitchen counter) that I actually know now that I have Common Variable Immune Deficiency. The sad reality is many people much sicker than I spend much longer than I visiting doctor after doctor, googling possible diseases for hours, trying treatment after treatment, taking medicine after medicine before they learn about their CVID. Yes, it is strange to write this, but I am one of the lucky ones.

Becoming the CVIDiva Didn’t Happen Overnight

After I was diagnosed with CVID, I wasn’t this super positive person right away. In fact, you’ll read several posts on my blog in which I discuss depression, grief and fear. I played “the victim,” and truthfully still do some days.

However, I feel those feelings less and less now because of my family, my friends, the friends I’ve made through various support groups, my doctor and a lot of personal self-improvement work.

I have successfully been able to turn my largest’s health crisis into an asset and so can you.

If you have questions, want to share your story or just want to reach out please contact me!

I have some simple goals with this blog:

1. I want to raise awareness surrounding the symptoms of CVID among both the public & medical professionals as well as when to test for the deficiency among doctors and other medical professionals.

2. I want to build a comprehensive list of resources and a community of support for those living with this lonely thing called CVID.

3. I want to help others navigate the often confusing healthcare system and its practitioners to build your stellar team of medical professionals.

4. I want to learn from others all that I can in order to live my best life possible.

If you are living with CVID, have a loved one with CVID and/or just want to say “Hello!” please reach out & share your story with me.
susanalynne@cvidiva.com