2020 – Week 9 – It That Shall Not Be Named

And life gets interrupted.

So, after a couple of weeks of working with the best webmaster ever – see Week 8’s post – I started to feel funny in my chest after work on November 23 – the Monday of Thanksgiving week. Tuesday I had a blinding headache and was unable to work. And the headache continued, so no work on Wednesday – then Thursday was the holiday and I had scheduled Friday off.

Wednesday I started to be fatigued – as in asleep most of the day and night. Cancelled Thanksgiving. My husband was sick for a week before my headache started, but thought it was his annual allergy/bronchitis/antibiotic maybe a chest x-ray routine. Friday night, he was feeling so bad, I took him to the ER and stayed outside in a cold car for five hours. He called a few times with an update – yep – Itthatshallnotbenamed positive test result.

He asked the ER doc if I should come in for a test, explaining my symptoms, etc., and he said “no – since she lives with you, has those symptoms, she is a presumptive positive.” I told him in a text to ask for a nebulized Pulmacort prescription. The doc said, “It won’t do any good, but I’ll call your pharmacy.” They did a bunch of tests to rule out a PE, etc., patted him on the head and sent him home with no hope.

So – there you go.

We picked up the prescription the next morning and it was albuterol. My husband tried a few doses, but was no better, so asked his primary doc for the Pulmacort. They sent a prescription in, and when we got it, it was Duoneb – essentially the same thing as albuterol, and not what he asked for.

– a week has been wasted and we still feel like crap, husband said he thought he was going to die – I told him to shut-up, he didn’t have permission to die (and so he didn’t – he’s a very negative thinker). I got on the patient portal and essentially said, “The ER doc sent albuterol, telling us it won’t work, but try anyway. We asked you for Pulmacort, and you sent Duoneb, which didn’t work. What is the harm in trying Pulmacort? We’ve had two friend who were helped with nebulized steroids, and another with steroid tablets.”

So guess what? They sent nebulized Pulmacort, and after about three treatments, we both started to feel better. Who knew? I did.

And there went 3+ weeks of work and activities, and life as I had known it for over six decades. Itthatshallnotbenamed is real. Many people have suffered and died. Husband was off work four weeks, and the jury is still out on me – feeling better, but not back to normal or to work.

Two lessons: First – Be your own advocate. Do NOT let the medical community tell you there is nothing to be done. Research – now – before you get sick. Take care of your self – now – before you get sick. Know what has worked for others – now – before you get sick, and ask for those treatments.

And second – Be grateful for all you have. Life is short!