MY-CVID-DIAGNOSIS
ALL POSTS,  CVID HEALTH

My CVID Diagnosis Journey…or Should I Say Saga(?)

Before my CVID Diagnosis

After a lifelong history of recurrent bacterial infections in my ears, sinuses, tonsils, and bladder; viral infections; gastrointestinal pain, body and joint aches; and overall low energy since birth, I finally received my CVID diagnosis at age 41 by accident which I’ll get into below.

Perhaps because of these physical issues, I was driven to be a high achiever.

I was a competitive (and eventually professional) dancer since the age of 4, a member and Captain of my high school and college dance teams, and participated in numerous clubs and activities including editing positions on school newspapers and Vice President of my college sorority.

I graduated Cum Laude from college with a Communications degree and Summa Cum Laude from graduate school with my Health and Exercise Science degree (M.S.) while working full time and a young mother.

In 2007, I accepted a coveted full-time sales position with Varsity Spirit Fashion and in 2008 began teaching Yoga as well in the physical education department of Johnson County Community College. I always felt fortunate to do work I loved, to have family and friends who mean something to me, and to have enjoyed good physical health.

Autoimmune Disorders Set In

In 2008, I distinctly remember the first few “pangs” of pain in my large thumb joints while teaching yoga and deep in my left hip joint while driving long distances as a sales representative to see customers.

As a former dancer, active yoga teacher, and runner, I was used to various muscle aches and pains that are common for athletes.

However, this pain was different.

This pain never went away. It only increased over time and seemed to spread body-wide.

I experienced increasing pain in my lower back and in October of 2010 found myself immobilized with pain. I was diagnosed with a herniated disc in my L4-L5 region for which I would receive 5 steroid shots in my spine over the course of the next 2 years in an attempt to control the pain.

Unfortunately, the pain from my back never fully subsided and only added to the body-wide aches and sharp pains I felt in my joints.

I saw many doctors in order to find the source of the pain who subsequently diagnosed me with several autoimmune disorders including Fibromyalgia, Rheumatoid Arthritis, and Ankylosing Spondylitis with degenerative disc disease.

Together, my doctors and I tried everything to control the pain including doctor-prescribed muscle-relaxers, opioids, steroids, weekly self-injections of Enbrel and Humira, massage, chiropractic care, meditation, rake, numerous supplements, and physical therapy.

Because it was painful to sit for long periods of time at my computer or while driving, to lift my samples while on appointments, to load my vehicle, and to bend/crouch down to size cheerleaders and dancers for uniforms during my appointments; my efficiency decreased as my ability to complete my duties took longer.

At this time, my Rheumatologist (and my body) suggested applying for a 6-week disability leave with my company for which I was provided in May/June of 2014.

Despite my 6-week disability leave, fatigue became a way of life. I kept adjusting my life in pain and exhaustion downward, maintaining a 40 hour a week work schedule and nothing else.

In January of 2015, I developed a painful and debilitating autoimmune disease called Interstitial Cystitis, an inflammatory condition of the bladder lining. It has all of the symptomatology of a bladder infection, but these exist in the absence of any bacterial infection.

My Interstitial Cystitis also presented with a constant fever, nausea, and malaise which confined me to bed. These symptoms would subside only if I remained on an antibiotic, which I did through November of 2015 when I eventually elected to have a permanent InterStim Neural Device permanently implanted in my lower back that stimulates the sacral nerve to normalize the neural communication between my bladder and brain. The InterStim device allowed me to stop taking antibiotics, but I still continued to have pelvic and lower back pain.

Despite the agonizing physical pain and resultant exhaustion of living with Interstitial Cystitis as well as my other autoimmune conditions, I continued my work with Varsity Spirit Fashion (a big part of my identity), resting nights and weekends. I adjusted to the diminishment of my health and still called my life successful due to my supportive family, optimistic outlook, persistence to get better and my love of my career.

It Starts Getting Real…for REAL!

Beginning in June 2016, my body was unable to heal from what seemed like a minor cold with sore throat. Since then, I had also been chronically sick with viruses that mimicked mononucleosis, the flu and strep throat even though the doctor’s tests come back negative.

I also felt “foggy” mentally 90% of the time, had trouble “grasping” for words, and couldn’t retain my immediate or short-term memory skills well. Each day I had a different degree of total-body pain, pelvic pain, sore throat, chronic migraines, fogginess and fatigue. I spent 90% of my time resting in bed. On my worst days (these are often 2-4 days each week), I could not get out of bed at all to shower, dress, or help my children do the same before school.

My mother, mother-in-law, and hired help took over the household duties and childcare. Although I tried to continue working at a job I loved, I finally gave notice to the company I had been with for almost ten years in August 2017.

A CVID Diagnosis…FINALLY!

In October 2017, I took my youngest son Jace in to see his asthma, allergy and immunology doctor, Dr. K. Jace had been a patient of Dr. K ‘s since he was two for asthma. My husband and I were so thankful to Dr. K for diagnosing Jace with the cause of his asthma, acid reflux! After this diagnosis and treatment, we were finally able to get a decent night’s sleep!

At this appointment in October 2017, I mentioned something about myself in regards to Jace to help Dr. K. Jace had yet another virus that traveled to his lungs and was causing lots of coughing, mucus, and vomiting. I do not even remember what I said, but Dr. K took one look at me and told me he needed to run some blood tests on me right away!

The nurses started scrambling because Dr. K wanted these blood tests ASAP, but ultimately I came back in for my own appointment so they could document my medical history up to that point for insurance purposes of course. I hate needles, anything medically-related, and definitely having my blood drawn and this test was a “doozy”. They drew something like ten vials of blood for extensive testing of my immune system and then I waited.

The tests do take a couple of weeks to come back because of all the extensive testing that has to be done. When the tests finally came back in I had another appointment with Dr. K to discuss the results. The results showed very low levels of immunoglobulin G (IgG) and low levels of immunoglobulin A (IgA). Dr. K explained that it was IgG antibodies that made up the majority of my immune system’s ability to fight of viruses and bacterial infections and my body did not have enough!

Dr. K then gave me a common vaccine for meningitis to test if and how many of my titers would rise and an another blood test order (yippee!). Giving a vaccine and testing for titer reaction is the second part of testing for a CVID diagnosis.

On October 31, 2017, I was told by Dr. K that only 5 out of 23 of my titers responded. To put that in perspective, the average person would normally have 17 out of 23 titers respond. He then explained that I had a genetic condition called CVID and would need to start Intravenous plasma transfusions every three weeks for the rest of my life.

I was shell shocked to say the least.

It was a long, windy, and painful road to my CVID diagnosis and I have mixed-emotions, but I am relieved to know what I have and that there is treatment.

Please Consider Sharing Your CVID Diagnosis Journey

I share my ten year journey to my CVID Diagnosis because the stats indicate that it takes most people 10-15 years to finally receive a correct diagnosis of CVID. It has helped me so much to read the diagnosis journeys of other CVID patients since I’ve been diagnosed. It lets me know that my situation and journey was not all that unusual.

It reminds me that I am not alone.

So, please help others and consider sharing your CVID Diagnosis Journey in the comments section below. Let’s tackle our CVID diagnosis together!

Stay strong my Zebra friends!

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