Mom’s Story: No More Cliff Diving, Part One

Note: While I am posting this on Mom’s behalf, she wrote it. No one can tell her story as well as she can.

For many years I told my doctors they were missing something. Two years ago I started to really spiral down,  then a year ago my world turned upside down.

When a doctor is explaining your test results to you and concludes with, “You would have been better off with a diagnosis of lung cancer,” you know you’re in big trouble. I was told I have a terminal illness called Idiopathic Pulmonary Fibrosis (IPF). I had never heard of it until I was diagnosed. There is no cure and most indications on average, are diagnosis to death in 3-5 years. The Coalition for Pulmonary Fibrosis estimates there are 128,000 people living with PF in the United States, with 48,000 new cases diagnosed every year.

Pulmonary Fibrosis is part of a collection of diseases and disorders referred to as Interstitial Lung Disease. My diagnosis is more specific as it is Usual Interstitial Pneumonia (UIP), still it falls under the IPF family of horror! It is more than likely my UIP/IPF is caused by two issues but still not conclusive. Thus, the “I” in IPF, because Idiopathic means “still unknown”. The known part is years of inflammation in my body, and the unknown might be the years of environmental workplace exposure to cleaning chemicals.

Since the early nineties I’ve suffered from periods of severe joint pain and extreme fatigue. I was working long hours as a housekeeper in the hotel industry and was frequently exposed to chemicals. My kids were teenagers at the time and I blew off the fatigue to that. Then, I started getting unusual rashes and ended up in the emergency room. The doctors said I had a high positive ANA with elevated inflammatory factors. WHAT? It meant my body was producing antibodies that would normally protect me, but in this case they were attacking my body. This was the beginning of my relationship with rheumatologists and their fix-all steroid dose packs. I was told I had Rheumatoid Arthritis and a non-specific autoimmune disease. The steroids worked temporarily but within a few months, I would flair up again and be right back where I started.

Years later, I was on to the fifth rheumatologist and the same old thing. Test after test, but because I didn’t show all the “markers” for a specific illness they were not aggressive in treating me.

I was having stomach problems, degenerative disk disease in my back, and vision problems. It was an ophthalmologist who said they had never seen such a severe case of dry eyes. I had hardly any tear film at all, and based on my history I was diagnosed with an autoimmune disease called Sjogren’s Syndrome. It creates inflammation, which attacks your body and wreaks havoc. Two of the most common symptoms are dry mouth and dry eyes.

Looking back, I truly believe if all those doctors had not been so “by the book” and listened to me, they might have been more aggressive in keeping the inflammation away with an immunosuppressant instead of harmful and temporary steroids. Maybe my lungs would be in better condition, who knows? I can’t help but wonder if it would have changed anything.

In February 2012, I was back at the rheumatologist and it was the same old thing. I left the office and went back to work not feeling well. That night I was in the emergency room with a severe case of pneumonia. I was in the hospital for 5 days.

This was how it was day in and day out, I was in so much pain and the fatigue was horrible. I had also developed an ongoing dry cough. It was so bad I was going through bags and bags of cough drops, and cough syrup at work. At the time, I had been at a job I loved for over six years, working as a household manager at a private estate. I never missed work before, but was starting to miss days due to illness. One morning I was so bad my husband, Don, had to drive me to a pain management doctor.

Read part two here.