Hi there! My name is Susan Alynne, and my life has completely changed because of a CVID diagnosis!
After an almost 10-year search for the root cause of chronic pain and fatigue, and a handful of autoimmune diagnoses including Fibromyalgia, Interstitial Cystitis, Sjogren’s Syndrome, Rheumatoid Arthritis, and Ankylosing Spondylitis (this one was called a “maybe” by the doc), I finally-FINALLY-found out I have CVID in October 2017. Despite its name, Common Variable Immune Deficiency (CVID) is actually a rare Primary Immunodeficiency Disease (PIDD) of which there are over 300 known today. (Check out these websites on CVID and PIDD to learn all the details.)
Before 2017, if you saw me shopping at my local Walmart, 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? You can read more about my diagnosis journey here.)
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 CVID. 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.
I have some simple goals with this blog:
- I want to raise awareness surrounding the variable symptoms of CVID and when to test for the deficiency among doctors and other medical professionals;
- I want to raise public awareness;
- I want to build a community of support for those living with this lonely thing called CVID;
- I want to help others navigate the often confusing and very partitioned (shall we say) healthcare system and its practitioners;
- I want to learn from others all that I can in order to live my best life possible.
Thanks for visiting and please, please reach out and connect because we can get through this together!