A difficult week

I haven't written all week because I've been struggling with difficult symptoms--pain, exhaustion, lots of coughing, anxiety, jitters--just general misery. Each day that goes by I feel less and less able to manage my life, which is spinning out of control. I haven't been able to pay my bills, which has increased my anxiety, and it has become a vicious circle. Yesterday, Marie, the chaplain, came for a visit and she, Marty, and I made a start on getting things straightened out. I have money in an ING account which I didn't know how to access, but Marty found a phone number and was able to transfer money into my regular checking account, and he called the mortgage company to arrange for that bill to get paid. What I've learned from this experience is that it doesn't help me to keep these things bottled up--that makes me feel more out of control. Asking for help is the beginning of regaining control, which is hard to see when I feel so overwhelmed.

Physically, things are getting worse. I've been having intense coughing spasms, with very thick mucus that is hard to get up, and my belly is sore from all that coughing. I'm supposed to hold a pillow to my stomach and press on it when I cough, which helps a little. I'm tired from coughing so much, but at least for the past few nights I've been able to sleep soundly. Last night I woke up several times, looked at the clock, and was able to go back to sleep each time after reading for a little while. I must have fallen asleep at one point with the book light on, because the next time I woke up and tried to turn it on it was dead. I felt really proud of myself that I was able to get the batteries changed without needing to wake Marty, and then I read for a short while and got back to sleep again.

Two other important accomplishments this week is that I've managed to read a book all the way through and I've written and submitted an op-ed piece on hospice care. For months now my reading has been limited to the newspapers, the New Yorker, and Vanity Fair, but when I try to read a book my mind started to wander. I've had the novel, The Corrections, by Jonathan Franzen, on my bookcase headboard for months, but I finally started to read it last week, and after a little difficulty getting through the opening section, which I found floridly overwritten, I got drawn in and read for several hours every day, finishing it yesterday. I have to give some though to my complicated reactions to this complex book.

I also wrote a piece about health care reform and hospice care, based on cuts that are in the Senate bill, which don't make sense, since hospice keeps people out of institutional services which are more expensive and often inappropriate. I read the story in the Times on Monday, and instead of just thinking about responding, I asked for the computer and started to write. I spent some time editing and revising it, and ran it past the contact I have at the palliative care organization in Washington, and sent it to the Times on Wednesday. I got an automated reply saying that they would make a decision within three business days, and if I didn't hear from them by then I could feel free to submit it somewhere else. It makes me feel good that at least that part of my brain still works, when I'm having difficulty finding words for ordinary things and get incredibly frustrated when I can't explain what I'm trying to say.

I've been on the phone with Lauren quite a bit to discuss my escalating symptoms. The approach has been to try to thin the secretions, with various drugs and lots of fluids, but then Lauren proposed a different approach, of drying them up instead, and she prescribed a drug that I was to take two drops of, under the tongue. But I accidentally took too much, and my mouth and throat got incredibly dry, and I had to wait for it to wear off. Because it's so potent, and hard to control the dropper when it's in my mouth, Lauren said I should drop it into a spoon and then let it roll off the spoon and let it flow under my tongue. But I'm still coughing, so that approach doesn't seem to be working. I'm just so tired of all this, and it just goes on and on.