My current commute results in an unconventional schedule. If everything goes according to plan, I’m asleep by 8:00 pm. My alarm goes off at 3:40 am and I’m on the train by 5:00 am. I end up getting just under 8 hours of sleep each night and then nap another 30 minutes or more on the morning train.
Chronic illnesses leave me perpetually exhausted, but it’s a level that has become a “new normal” to me. I am tuned in to my body enough to know when I am feeling more run down (usually a sign that an illness or flare is coming) or have more energy (usually a result of favorable weather or extra self care). But even after 20 years of experience with full time chronic illness, I’m don’t always know everything. I still need doctors, and imaging tests, and blood work. I can’t do it all on my own, but too often, I’m left feeling that way.
One recent morning, I had trouble fully waking up as the commuter train approached my stop. My scheduled iPhone alarm went off, I gathered my things, and stood near the door, yawning viciously the entire time. I fell while walking up the escalator into the terminal. It didn’t seem that I tripped. It felt more like I just collapsed. I quickly recovered and made my way into my office. I had my normal caffeinated beverage, but I was still extremely sleepy. Every time I bent my head down toward my desk I would fall asleep. I know my body enough to know that this is not normal. Something was wrong. I just didn’t know what.
I went to the nurse’s office (yes, my office building has a nurse – pretty cool, right?) and asked her to check my blood sugar and blood pressure. They were both okay. Not knowing what else to do, she let me lay down in a back room for about 20 minutes. When she knocked later, I had been sound asleep. I straightened my outfit and went back to my desk, still very sleepy.
I called for an appointment with my primary care physician and took the earliest train home. My doctor is the best one in the practice and this makes it very difficult to book an appointment with her. I was looking for a same day appointment, so I had to settle for one of her partners. The doctor I saw has been my backup primary care physician for years now – she’s seen me several times, has always provided adequate care with a pleasant attitude, plus it’s the same practice so she has access to the same medical records that my normal doctor would have, and I figured she could peek her head into the hallway to consult with my doc if necessary.
Do you hear those alarm bells? This doctor spent most of my 15 minute appointment reviewing my medication. She did a brief exam (looking at nose and throat, listening to heart and lungs) and decided that the cause of my problem was all of my medications. “But I’ve been on those all for a while, the newest one was added more than 6 months ago,” I explained. They can have a cumulative effect, she said. “But I’ve never been this exhausted to the point of not being able to stay awake, and I’ve never fallen down before.” The doctor decided she will test my iron and “one other thing” that she did not tell me, but from her attitude it may as well have been a tox screen. “I’ve had low iron in the past to the point of needing IV iron infusions and that felt very different from how I feel now. I even then I never fell down,” I tried explaining to her, again. But the doctor was convinced and there was nothing else I could do. And I was so very sleepy that even the 15 minute appointment was difficult, I was not in top form for a debate.
Later, once I was home and had slept more and still not felt any more rested, I got mad. How is a patient supposed to do it all? I need the help of doctors, at the very least to agree to run tests and order prescriptions. I would welcome their medical expertise in figuring out my problems, especially in situations like this where even staying awake was a challenge. I ended up sleeping for more than 15 hours straight. I did not go to work the next day. It took me 4 hour to rally enough to get out of bed and pull on clothes. My sweet mother drove 15 minutes to pick me up to take me to the walk in clinic 3 minutes down the street.
That doctor was an older man that I’d never seen before, but I had been to the clinic for minor medical issues when my primary care doctor’s office was closed. This time though, there was an ad on the wall for a weight loss supplement. I had a bad feeling. The doctor told me I probably had adrenal fatigue and recommended a long list of supplements. Didn’t I just hear about a big study that showed vitamin supplements did no real good? He also suggested that I would do a test where I spit into a container several times through a day and then mailed it off to be tested to confirm the adrenal fatigue theory. This may be a character flaw, but whenever a doctor suggests some new medicine or test I immediately cringe expecting it to be expensive. The doctor didn’t know how much it would cost. I basically begged him to give me a flu test and they threw in a strep test. Both in-office tests came back negative. I asked about the high rate of inaccurate results from in-office flu tests, but the doctor refused to send off a lab test. When the assistant/trainee came in with a list of supplements and the name of the adrenal test, my mom and I pushed again – neither of us wanted to leave a second doctor in two days with no solid leads on what was wrong and how to make it better.
Finally the I agreed to have a blood test for a mycoplasma infection. This was another thing I had never heard of and assumed was expensive. The phlebotomist was able to give me the charge code, but it was not practical to go home, attempt to get my insurance company to tell me the price, then come back later to have the blood drawn. So I spent a couple days anxiously waiting for both the test results and the bill.
The test came back positive; I had “walking pneumonia.” The clinic doctor ordered 30 days of antibiotics, which I then had to clear with my gastroenterologist because I’ve had c. diff at least twice and am terrified of another bout. Even with a daily probiotic, I was unable to tolerate the antibiotic, so had to call in for another option.
But that’s only two visits to the doctor when the title mentions three. Turns out that I had seen my primary care doctor 5 days prior to the start of these events. She diagnosed me with a sinus infection and prescribed a Z-pak because I have a history of yearly infections that my immune-suppressed body can’t kick on its own. I still do not know if this was actually related to the walking pneumonia. Based on the difficulty I had getting a diagnosis and effective treatment, you’ll forgive me for choosing not to pursue the issue further.
What have we learned?
This experience illustrates several key issues chronic patients in America face today. A pattern of doctors not listening to patient concerns still exists, even though patients are being encouraged to be more engaged in their own care. Primary care doctors don’t have enough time with patients. Pain and mental health concerns are big enough red flags that they risk obscures other solutions from physicians’ minds. There is difficulty knowing prices in advance, which lead to uninformed decisions. Doctors selling things other than medical expertise, which leads patients to question their motives and breeds mistrust.