Thursday, December 21, 2023
In bed at 10:30, up at 5:20, heart aching as I listen to Geri coughing again, fingers crossed. Let Lilly out. 36°, high of 41°, cloudy day ahead, wind is 10 mph off the lake, 4-10/15 Sunrise at 7:20 at 122°SE, sunset at 4: 19 at 238°SW, solar noon at 11:49 a.m., altitude 24°
Treadmill; pain. CPP much of the day but 30:19 & 0.60 at 3 p.m., watching "The Nature of Reality: A Dialogue Between a Buddhist Scholar and a Physicist" on YouTube. I watched only the first hour or so and will return to the rest. Very intresting. The Buddhist is Alan Wallace, trained by the Dalai Llama, and Sean Carroll, a theoretical physicist at CalTech. The program occurred on 2/16, 2017 at Dartmouth. I was and am interested in what each of the interlocutors had to say because of my interest in Buddhism and Mindfulness on the one hand and cosmology and particle physics on the other. (An interesting fact mentioned by the physicist: There are about 2 trillion galaxies in the observable universe and on average about 100 billion stars in each galaxy!)
I'm grateful for the many diseases I have escaped in my life. My dear sister and I were both cigarette smokers for decades. She suffered from COPD; why not me? Bob Friedber and I, born 3 years apart, shared the same birthday, He came down with lung cancer, though not a smoker; why not me? My beloved mother died at 51 when an aneurysm leaked into her brain; why not me. TSJ died of a heart conditon, David Branch of amyloidosis, and Bill Guis of canceer; why not me?
Solstice. The December solstice (winter solstice) in Milwaukee is at 9:27 pm today. In terms of daylight, this day is 6 hours, 22 minutes shorter than the June solstice. In most locations north of the equator, the shortest day of the year is around this date. The earliest sunset is on December 9.
A self-portrait I painted in oil many years ago. One of the things I like about it is the interrupted, vertical, white line that appears on the right side of my face. It is mouse poop that I found on the painting when I retrieved it from its storage space under the basement stairs in our house in Saukville. I cleaned it up as well as I could but am happy I couldn't clean up that vertical white line. It helps to keep me humble, even in a self-portrait.
Interstitial cystitis. Cystitis refers to inflammation of the bladder, a painful condition. The Mayo Clinic website says "In otherwise healthy men, cystitis is rare. Any symptoms should be checked by a health care provider." I'm one of the rare men to have the condition. Or probably not-so-rare because I am not "otherwise healthy." In any event, WebMD says "Some people have a condition called interstitial cystitis, where the bladder is constantly swollen but there’s no detectable infection. Doctors aren’t sure what causes it, and it’s much harder to treat than regular cystitis." I can attest to that. One of its symptoms is frequent urination. I have thought for some time now that I am up and out of bed making 'pit stops' at least 5 and more often 6 times each night. Last night, I used my mechanical clicker to keep track of the pit stops and the count, including the one just before going to bed and the one upon arising, was 8, i.e., 6 during sleep time and on average, once every hour and 10 minutes. I can't know the effect of the sleep interruption on my health, but I am only too aware of its effects during the day, i.e., tiredness from insufficient sleep. The last couple of days I've been too 'out of it' to devote much time to journal entries, brain-fogged. Hence my little doggeral on yesterday's journal: "Chronic pain / Saps my brain." Pain is the more troubling symptom. If I can't empty my bladder of its meager contents, I am in deep trouble, barely able to stand up straight or to walk and in severe pain. Because of this, I can't enter our freeways without some anxiety. If there is an accident (or a freeway shooting) that causes a shutdown of traffic and I am trapped in my car, I am, as I have said, in deep trouble. I keep a portable hospital urinal in the car but it's not likely that I would be able to use it on the freeway, even standing outside the car. Sometimes I can pee standing up, but often I have to be seated on a toilet. When I mentioned this to Nurse Practitioner Katie in the VA Pain Clinic, she suggested using Depends Adult diapers, a daunting thought, and not a workable one because are about 100 to 1 that I wouldn't be able to pee at will while sitting in the car or even while standing outside it. Such is the nature of my antique plumbing. It's a rare day, if any, that I don't experience a lot of discomfort from the IC and more ofter, some pain, including pelvic floor muscle spasms. I am wondering now whether I am going through a recurrence of the Hunner's Ulcers that I had 15-20 years ago. That grim experience was treated with 3 outpatient surgeries and a period of weekly DMSO infusions. It had me dealing with frequent periods of suicidal ideation.
Notes from a journal I kept back in 2009:
3-26-09. Up at 8, @ 10 hours of sleep. Intermittent pain during the night, moderate pain on awakening until @ 10:30 a.m.
Receivved call from Dr. Silbar's office to schedule "a look inside your bladder" on 4/1 at Rawson Avenue office. Informed called of my bad experience at Froedtert w/ urodynamics test. I don't know whether the trainee-nurse was especially ham-handed or whether the intense pain was a result of my bladder-urethra-prostate-penis anatomy, but I hope never to have a similar experience. . .
By 2:30, pain has increased to 5 or 6, L.T. & perineal. Walking becoming painful, By 3:30, pain is slight. . .
To bed at 10 with some moderate pain.
Still having a hard time keeping all the meds straight, especially the new ones: Cytotec 4 times a day w/food, amitriptyline morning and night, omeprozole 1/2 hour before morning and evening meals.
4/7/09 Tuesday Today the catheter procedure.
The catheter procedure was painful but less painful that the one I suffered through at Froederdt 2 years ago. I wondered if Dr. Silbar really believed I could follow his instruction to "relax" as he worked to thrust the catheter past my urethral sphincter which very decidedly did not want to open the door to my bladder. The neck of my bladder was also inhospitable. Ouch & ouch.
While he was surveying the terrain of my bladder wall, Silbar asked me if I had been a smoer, which should have tipped off that he was seeing something that looked like cancer. Sure enough, when the ordeal was over, he told me there was redness in there that could by cystitis or could be cancer. I think he took some tissue but I can't be sure since my head was still a bit stressed out from the invasion of the other end of my torso. It would have been helpful to have someone there with me with a clear head. Andy offered last night but I declined - a mistake.
12/20/20 Kitty hospital
1/6/21 Capitol assaulted
Personal journals have their uses. I wish I had been more diligent in maintaining one. It's been a long hard slog with chronic pelvic pain and interstitial cystitis. I'm noting that even in 2009, the CPP was on the left side of the perineum.
VA Meditation and Mindfulness chat. I called in to the weekly conversation originating in the Green Bay VA center on mindfulness & meditation again this morning. Lou led the discussion, joined by Bill, Mike, Chris, Jim and me. A good discussion. There is nothing very formal or directed about these sessions but they are interesting and helpful. It's also a long-distance, attenuated form of socializing with a few other vets.
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