Lisa Ann's Story
"I woke up and both of my eyes were swollen shut. The doctor thought I was having a really bad reaction to something, but that was actually the very first autoimmune attack I've ever had."
This is the story of Lisa Ann from Boston, New York.
Lisa Ann was working as an owner of a small photography firm in Saratoga Springs, New York when she had her first autoimmune attack. She recalls this moment very well:
"I got a call from my mom. I remember holding the phone tightly to my ear as if by holding it tight, I would be able to hold onto her voice. That day, that morning, she told me point blank that she was going to die and that there was nothing anybody could do any more.”
The next morning, Lisa Ann woke up and both of her eyes were swollen shut. She had to drive to the eye doctor holding her eye open with one hand and driving with the other. According to Lisa Ann, “the doctor took one look at me and said, ‘well, you're obviously having a really bad reaction to something’, and that would be the very first autoimmune attack that I've ever had.”
It came back in a major rage and it was my throat, my mouth, the inside of my mouth. And I started getting blisters on my lips. It took seven doctors over seven months, and I had lost over 70 pounds.
After a few ups and downs in Lisa Ann’s life with family, work and a surviving a serious car accident, things finally seemed to turnaround. That is, until her disease symptoms started to re-emerge. Lisa Ann describes what that felt like:
“It came back in a major rage and it was my throat, my mouth, the inside of my mouth. And I started getting blisters on my lips. It took seven doctors over seven months, and I had lost over 70 pounds. When I finally got the diagnosis, three-quarters of my body was a raw open wound and I was losing about 14 cups of fluid a day through my skin, into my towels and sheets and blankets. Of course, the guy I was dating had gone away because that kind of drama is not what a new relationship is good for.”
Since getting sick, Lisa Ann has spent a lot of time with other people diagnosed with pemphigus vulgaris. In these conversations, she also hears about the emotional stress for caregivers, which Lisa has not had to consider in her disease journey. Lisa Ann discusses her experience in tackling the disease without a regular caregiver:
“I didn't have a caregiver, so I didn't have to worry about somebody else's emotional connection. I didn't have somebody forcing me to get out of bed and go to work. If I didn't want to put clothes on because my whole back was raw, and a lot of my front was raw, that was fine. I kind of see it as an advantage that I lived alone, that I was able to not pull anybody into this drama.”
Live today, not in the future.
Finally having the pemphigus vulgaris diagnosis has led to some big changes in Lisa Ann’s life, including a new perspective on how she wants to live her life after many years of letting her symptoms and disease drive her decisions. Here is what she had to say on her ‘carpe diem’ attitude:
"You know, there's a difference between living your life the way you want to live it and living in fear all the time. I choose to live my life, which includes getting on the motorcycle and going and feeling that wind in my face and feeling the sun on my body. I choose to live this way because I could have died in my bedroom with half of my skin. I could have died on my bathroom floor but I didn't. I choose to live today, not in the future."