Random Thoughts Feb 14, 2009

ferncohen.com

As each stage of this disease comes about, I find myself adjusting to a "new normal". For reasons of hygiene, I have to be woken up by the night aide at 6:00am, to do some personal care. This means less time sleeping in my bed on the bi-pap vent. So, I need to nap later in the morning with the bi-pap on. Actually my doctor wants me to use the bi-pap more during the day. I have been resistant, because I know that needing the bi-pap more than sleeptime means the disease is progressing. But the reality is that the circles and puffiness around my eyes are due to insufficient oxygen.

And I have been perfect in monitoring my medication, except for yesterday. I didn't realize I had run out of Baclofen, and could not take it last night or this morning. I am reading that the withdrawal can be wicked and even dangerous, so I am biting the bullet until the pharmacy opens in about 90 minutes. In the meantime, I tossed and turned last night and felt feverish; that is from the withdrawal.

I am accustomed to giving the aides the television remote, but yesterday I had a rare opportunity to watch an IFC movie. It was a Japanese movie called "Nobody Knows" about a mom who abandons her children to fend for themselves. If there was ever a movie to kick up abandonment issues, this was it. I was bawling! And then at night I watched the special Diane Sawyer edition of "20/20" about Appalachia. More bawling. I am realizing that I am hurting and sad, and these two shows served as catharsis for me.

I had to put this blog on a site where I could monitor comments. I discovered way too late an embarrassing comment on my other site by someone who needed to get out some frustration I can't show all happiness and positivity all the time. I have to deal with most things by email or using relay calling. Just addressing an envelope can take a lot out of me. It's the little things that frustrate me sometimes. I always believed in presenting the hardships as well as the joys and blessings. If it gets too hard to read, you don't have to read it. I have no choice but to live it.

On Monday, I realized I had no dial tone on my phone. Verizon kept putting me through all kinds of troubleshooting hoops. When they suggested I do some kind of test on my jack, I knew this was beyond all realistic expectations. I also knew I had nobody coming to visit in the near future who could do this. So I sent off an email and I very politely told them that I am disabled and wheelchair-bound, so getting down on the floor was not an option. On Thursday, a repairman came out to repair it. On my weekly foray into the bathroom [the only time I go in there], I must have severed the cord with the wheelchair. The Verizon engineer needed to rewire and put the cord up higher. But I was more than three days without a house phone.

I appreciate when people are sensitive to my feelings, but wish everybody didn't walk on eggshells around me. Some of the people I used to be closest to, I don't know anymore. Some people tell me nothing about what is going on in their lives. Are they afraid if they tell me the good stuff I will be jealous? Are they afraid the bad stuff will upset me, or that I won't be empathetic? I have had a few people recently tell me why they are angry with me. Truth sometimes hurts, but in the end it helped me to understand that other people probably feel that way and won't tell me. It's like the 800 pound gorilla in the room. I've made mistakes along the way, but some of the very people who cheered me on later told me off. I was too truthful and too transparent. I hung onto every promise, every word people said. I wish some day that people will know what to say and what to do around people who have chronic [terminal] illness.