After a lifetime of struggling with severe asthma, it had gradually improved during the late 1980s and early ‘90s with new preventive medications. When I decided to move to Washington DC for graduate school, I had no real concerns. I was careful to find an apartment that met my allergy requirements to reduce mold and dust problems. Just a few blocks from the school, convenient to shops and the metro, no heavy traffic nearby – it seemed perfect.
I loved DC, and I loved my new grad program, demanding as it was. I even loved/loathed learning Russian (I have no gift for languages). We don’t often have a chance in the middle of our careers to take a couple of years to study and learn and just think about solutions to problems. It made an enormous difference for me, and I am so very glad I did it.
My first real health challenge was the next spring with elm trees, popular in DC, and one I’d rarely encountered before. But its pollen really disagreed with me. And dogwoods – oh, how I grew to hate Virginia’s favorite tree flower! I developed new allergies and treated them aggressively. And still asthma attacks were becoming more frequent.
New challenges mount
We couldn’t figure out why. Over the next few years, I seemed to be getting weaker all the time. My exhaustion was constant, the fatigue so great that taking a 5-minute shower would necessitate an hour-long nap.
My then-internist said I was “depressed,” and put me on an antidepressant. I thought he must be right, after all, I was discouraged by the constant asthma attacks and the impact they were having on my career. And I did feel a little better.
One thing, looking back, I should have noticed, but didn’t, was that I didn’t get sick constantly when I was working abroad, even in highly polluted cities like Cairo. I would need to take it easy during the worst air-quality periods and use my inhaler more often, maybe more preventive medicines, but no asthma attacks I couldn’t handle myself. Until I returned home.
My allergist at the time (consistently ranked as one of DC’s finest) offered no insights at all. He never mentioned an environmental audit to look for an unknown trigger in my flat. After all, I was very careful to keep allergy triggers to a minimum and used HEPA filters on my air conditioner/heater and supplemental room HEPA filters.
My biggest mistake not being proactive
This was when I made a potentially fatal mistake – literally. I should have hired an environmental engineer on my own to determine whether there was a hidden problem in my flat. And simultaneously had more physical tests to discover what new triggers were causing the constant attacks. But I didn’t.
Instead, I continued on. By 2000, I had become so ill, I was on an average of 60 mgs of prednisone per day FOR 18 MONTHS!
The only reason we found the cause was a freak flood that forced me to relocate. The workers doing renovation found toxic mold inside the walls of my flat. Never in the air ducts, bathroom, or kitchen where I would scrupulously clean and prevent moisture from being a welcome mat for the mold. The walls never showed any evidence of moisture build-up or mold, but evidently it lived quite happily in the wall cavities. The mold spores evidently seeped into the air through electrical outlets, around baseboards and other openings. And I breathed it in all night, and all day on the days I worked from home. That flood was August 11, 2001 – not a good year for me.
Soft-pedaling the danger
Every time I read an article like What are the Effects of Black Mold Exposure that soft-pedals how devastating long-term mold exposure can be, I want to scream. I’m sure the doctor means well, and simply doesn’t want patients panicking. But I think maybe we’d be seeing fewer cases like mine, of people whose asthma gets out control, who develop a cascade of problems … well, you’ll see from the rest of my story.
Once I moved into a new apartment and was off prednisone, I felt a little better. But my other problems were becoming chronic. And neither my then-internist, nor allergist mentioned anything about chronic steroid side effects. Not one word warning me of other problems resulting from the tremendous volume of steroids I’d been prescribed the past two years or the total over the previous years.
New issues cropped up like diabetes and dental/jaw problems. But there were also other problems that just felt as if there was something else going on – something that linked them in ways that weren’t obvious. Each time I mentioned them to a physician, though, they’d respond with something noncommittal and go on. Eventually, I started my own list on scraps of paper, then a list taped to my computer monitor, then finally a spreadsheet.
Medical mysteries persist
Severe, uncontrollable diarrhea that wasn’t triggered by specific foods. Two gastroenterologists said I needed more fiber to my diet and would just have to “cope” with it. Steadily worsening weakness with no apparent cause and that didn’t improve with increased strength-building exercise regimes. So weak that going grocery shopping was sometimes more than I could manage — meaning at times I ate only whatever I could buy in the convenience store in my apartment building.
Occasional falls when I seemed to trip over nothing and would have terrible trouble getting up. Trouble sleeping. Occasional brain “fogs” that would make it impossible to concentrate. Or my memory would fail when I’d try to remember something fundamental. It would get so bad at times, I’d be unable to read – a huge loss for someone who devours books and articles, and whose ability to write high-level analysis and persuasive reports underpinned my work.
Increased sensitivity to cold water (body temperature is too cold for me now!) – but not cold air. Rapidly increasing greying of hair, then loss of body hair, not just on my head. Despite having my thyroid removed in 1997 and my medication dosage perfect for years, it suddenly began worsening. Too low, then too high thyroid hormone levels in my body.
New chronic diseases complicate life
Diabetes, which was triggered by prednisone in 2005, became chronic in 2007. Worsening chronic pain, with no known cause and that didn’t respond to analgesics or other treatments. Sinus tachycardia – resting pulse rates that hovered about 130 and that leapt to 165 or higher with such minor exertion as taking a shower or unloading the dishwasher – despite having low-normal blood pressure and excellent EKGs. Restless legs and breakthrough jerking – not just at night, but throughout the day, too.
My asthma would be fairly well-controlled for a while before suddenly deteriorating, sometimes in the space of a few months. Severe achiness, like a bad case of the flu, but without an infection and unresponsive to analgesics. Fatigue so profound, it seemed to suck the life-force out of me.
I had finally left my former internist after a friend recommended an endocrinologist at George Washington Medical Faculty Associates in DC. I was so happy with the two doctors there — endocrinologist Dr. MT (now in Massachusetts) and allergist, Dr. JVL, that I moved all my care to MFA. That’s proven to be one of the best decisions I’ve made in the past 10 years.
No new insights
But I got no traction at all from other MFA doctors when I tried discussing these strange symptoms. They would shrug off the problems, either saying they were side effects of medication, or I must be depressed. Hell, yes, I was depressed! I had trouble with the most basic tasks, like putting clean sheets on my bed! No one could give me any answers and it had been going on for years. Only two of my physicians really seemed to hear what I was saying, and want to get to the bottom of it. My endocrinologist and my allergist.
It was having a substantial impact on me emotionally, too. For years, I would routinely go to San Antonio to check on my mother and stepfather. By 2012, I had to tell my brothers they would need to start pitching in. I’d go as often as possible, do as much as I could. But my health and strength were failing, and my doctors were telling me I needed to do much less.
