Saying Uncle: Judy's Story

A word from Lisa - There are many things with CVID that feel like are an inevitability to me. For the entirety of my adult life, I've planned for the possibility that I will need to stop working and go out on disability. It looked like it was going to be a necessity for me, prior to getting my autoimmune issues under control. I am very fortunate that we were able to find a treatment approach that was helpful and allows me to continue working full time. Not every patient has that luxury. When I first met Judy Kozulak, she was working full time in the health care industry. Over the past few years, that has become an unworkable situation, and she's had to leave work and go on disability. Judy has been kind enough to share her experience with us, in her own words. -Lisa


Applying for Disability

Applying for disability was one of the most nerve wrecking decisions I've ever made. The thoughts swirled in my head. Was I sick enough? Would they think I was sick enough? How could I survive financially? I was tied up in a knot. I knew I was sick enough. I had been hospitalized several times over the previous two years. I was mainlining coffee in an attempt to function in the office. I had figured out if I used TWO Keurig pods for each mug of coffee I could get enough caffeine to power me for another hour. Rather than eat lunch I closed my office door so I could neb while I worked. I hadn't had a vacation in years because all my time off had been used for doctor's visits. When I ran out of vacation time I was dragging myself in at 6 AM so I could leave at 2 PM for an afternoon doctor's visit in order to get a full paycheck. This was all in an effort to hang onto my FMLA days for hospitalizations. I had strategized well and I had been able to hold on my job long enough to get my daughter through college. However, I was half dead and had been hospitalized twice in the past 6 months.  It was time to let go.

For me, the decision to say, "Uncle," and file for disability wasn't a rash decision made at 4 AM one morning when the alarm went off. As I looked at the trajectory of my journey with CVID, it became apparent it was going to be a rough one, even prior to diagnosis. As with everything else in my life, I planned.

I was laid off from a previous job a month and a half prior to getting formally diagnosed with CVID. I knew the diagnosis was coming and I was divorced, raising my daughter. I couldn't freelance and become a consultant in the field I loved because I was about to be declared uninsurable. This was before the ACA and a pre-existing condition meant you couldn't get insurance.  I madly looked for a job that hit my 3 priority check boxes and was lucky to find one. I hit the trifecta- I found and landed a sedentary desk job that had health and disability insurance. I labored at that desk for many years, sick as a dog at times, knowing that I might never find a similar job again.

As the time drew closer I memorized the benefit book. I did the math and went fishing for the nuances of my employer's long-term disability policy when I was on short-term disability after hospitalizations. Both policies were through the same insurer and there weren't any details in the book, such as how long would you be on short-term disability before you transition to long-term disability. Information was power.

I collected my documentation. Excel, in conjunction with free downloaded calendars, became my friend as I recorded each doctor visit, each x-ray, each lab work and each Ig infusion on one calendar. The other calendar contained a daily record of what antibiotic and/ or antifungal I was on each day. I even color-coded each drug so it was easier to see when one drug ended and another started.  It was arduous work, but I was beginning to build my case because I knew one day I wasn't going to be able to work anymore. In a perfect world, my doctor's opinion that I was disabled would be adequate.  However, getting approved for Social Security Disability is getting more difficult each year. Receiving long-term disability through my employer meant being declared disabled by a private insurance company, whose best interests are served by declaring me able to work.

After several years of documentation, my years of employment ended. The previous fall I had been hospitalized for yet another infection and had forced myself to return to work by sheer willpower. That cold February afternoon I struggled to function at my desk.  I'd been communicating all day with my doctor about the progression of infection that hadn't responded to the antibiotics he'd prescribed. He scheduled an appointment for me that afternoon and told me he would probably be admitting me. I went to my boss and told her I was going to be out for a while because I was going to be hospitalized. I collected my most personal belongings and took them with me as I left for the doctor appointment. I knew the next time I returned, it would be to empty out my office. 

I walked through that door to the next phase of my life.

Thank you Judy for sharing your story with us. Have you had to make the choice to go out on disability? Do you have an experience you'd like to share? Reach out to us on Facebook, Twitter, or via Email. We'd love to help you tell your story.