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In May~2006 I was diagnosed with either Multiple Sclerosis or Acute Encephalomyelitis. I spent about a week and a half in the hospital. In July, I was feeling better. At the beginning of July we went camping in Vermont. at the end of July we went to Berlin, Germany.
About the third day on Berlin I started to feel bad. Naturally, I tried to relate this to my new status as an MS victim, and came up with all sorts of theories, most of which are now seen to be bogus. What actually happened is that my intestine burst open. I lay in the hotel bed for three days without eating until it was time for the plane to go back. We took the plane home and went to the emergency room in Worcester the next morning.
I half expected them to say "go home and eat more good American food", but by the next day I awoke from general anathesia to find that I was in the hospital for another week. Again, it was kind of blurry at the time, but I figured out that the surgeons had cut about six inches out of my intestine, connected the cut ends, and then, to give it time to heal, ran an upstream loop of it out through my side where it drained into a bag. This is called an ileostomy.
So during August and September I had to learn to deal with that, as well as undergo several unpleasant tests. On the plus side, I didn't have to wipe by butt for two months. Early in October I went back to surgery, this time eagerly, and after a week or so in the hospital my intestines were pretty much like anyone else's. Toward the end of October the surgeon removed some staples and told me to sit up; he doesn't want to see me again.
As October comes to an end, I have a bandage on my belly, but basically my intestines have been fixed. The main symptom of MS at this time is some trouble with reading. When I get to the end of the line, my eyes go crooked or out of focus while I try to find the start of the next line.
I remember I went to a Cinco de Mayo party (on May 5, of course) and everything seemed fine, but maybe I am just good at denial and rationalization. I got wobbly and sat down once, but I was going up a steep hill carrying a large and poorly-balanced duffle bag on my back.
D. tells me that as much as a year and a half ago she was walking behind me with my sister, and they were talking about how I seemed to be limping. I knew that sometimes my right toe would drag on the ground, especially when going up stairs, but since I broke that leg about 25 years ago, and it was never quite right again, I assumed that the problem was just stiffness in that ankle left over from decades ago.
About May 7 when I woke up, I seemed to have lost my sense of balance and I was seeing double. This made it hard to walk without falling down. Over the next few days I fell a lot but could walk with help from walls and fences, etc. Since I could get where I wanted to go, I just kept going.
From about Monday, May 15 until Thursday, May 18 it seemed to be getting better, but I was still unsteady on my feet and seeing double, that is, improving but not improving rapidly. Also, my speech seemed a bit slurred, even to me, but D. noticed it too, but it was hard to tell for sure.
Eventually it became impossible to ignore the problem. When you have to admit that your nose is swollen and purple because your fell over and smashed it into the coffee table, denial is no longer an option. I seem to remember that I fell because I slipped in the vomit, but I also seem to remember that I vomitted because I fell over. The only way to make these memories consistant is to say that I fell over and smashed my face twice in a few minutes, so that excuse does not work out. We decided I should see a doctor.
On Friday, May 19, D. made an appointment with a doctor for next Monday. On Monday, May 22, since I was still seeing double and was unsteady, I could not drive, so D. took me to my primary care physician, Dr. C., at the WMC. He scheduled me for a brain MRI on Wednesday afternoon. I seemed to be getting better, but went for the MRI anyway.
We planned to go camping in Vermont from Friday evening until Monday (over Memorial day weekend). On Thursday, May 25, Dr. C's office called and wanted to see me at 10:45 on Friday. We decided to wait to go camping until Saturday, because we were not ready and it was going to rain Friday evening and with the doctor's appointment, we probably would not get there before the rain.
On Friday, May 26 Dr. C said the MRI showed acute de-myelination, which is consistent with Multiple Sclerosis, or MS. I sometimes say that MS stands for Miscellaneous Shit, because nobody really understands what causes it or even how to diagnose it. Dr. C had talked to a specialist in neurology at U Mass, Memorial and they agreed that I should start the treatment immediately.
The treatment was several hours of interveneous infusions of steroids each day for four consecutive days. Dr. C wanted to start them on Friday since it is best not to start treatments on a Saturday, especially on the Memorial Day weekend, when the usual staff are not there. He asked whether I wanted to do these as out-patient or to be admitted to the hospital. I selected out-patient because I was doing well and there seemed no need for the inconvenience and expense of hospitalization. [Note: a patient decision made with very little information of tradeoffs] So, no camping trip for the weekend.
Here is a link to the Mayo Clinic description of MS
I got worse while the treatment was being done. The doctors say that I probably would have gotten worse in any case, and that the treatment may be slowing down the worsening, but nobody really knows. In any case, the treatment was not a miracle cure. I had trouble walking. Also, they said that a side effect of the steroids is a metallic taste. This is similar to the "pinch" they warn you about when they stick a needle into you—so much understatement as to border on a lie. The taste is much worse and all food tastes bad. I ate very little. Overall, I was significantly worse at the end of the treatments than when I started the treatments.
On Tuesday, May 30, I saw a neurologist in the morning and went to Mass General Hospital (MGH) emergency room that afternoon.
Here is a link to a page that describe ADEM:
myelitis.org definitions of ADEM
When I was in the hospital, I thought of ADEM as a good thing,
because it only happened once, rather than being a chronic
and worsening condition, like MS. While I was writing this
I found an amazing web site done by someone who had a much
worse case than I did. Looking at
slides from Steve's brain
and his home page made me realize that ADEM could be
a very bad thing. I still would rather have had ADEM
than have MS from now on. For some reason I can't
explain, I am more frightened by the future than
by the past, even when the past seems likely to
be worse.
The hospital gave me Prednisone in the form of pills. I have only foggy memories of my stay in the hospital, except that I had a hard time walking, even six feet to the toilet. Still, most of the people in there were in worse shape than I was. My first roommate had had a stroke, and was unable even to roll over in bed. He was taken away. My second roommate had entered the hospital because he had a bad headache. He kept talking about what he would do when he went home tomorrow, but I gathered that the headache was caused by a golf ball sized tumor in his brain. The doctors planned to split his skull open and cut out the tumor. I never said anything to him, but I doubt he went home the next day. My MRI was delayed because they needed the machine for a guy who had fallen thirty feet off a ladder and landed on his head in a pile of bricks. I was glad to wait an extra hour while they worked on him.
To summarize, we are back essentially to the original diagnosis, i.e., MS or ADEM, neither of which do the doctors understand. I was feeling better and the hospital did not seem to be doing much that could not be done at home. I wanted to go home, but there was no way. There was paperwork that needed to be filled out and signed by doctors, and they did not seem to want to do it. They did seem willing to transfer me to a different hospital.
I didn't much like Fairlawn. The only plan they had for taking a piss was to call a nurse. The state I was in meant that a need to piss did not leave me in a mood to wait. They kept waking me up in the night for little reason. Although it was broad daylight when I got there, the registration nurse showed up around midnight to ask the same questions that I had already answered any number of times. I threatened to walk home (the hospital is about a kilometer from our house). The nurse said I could not possibly do that. I was not sure if she was right, but I thought about a time when I was about fourteen years old and tried to hide from the police in the dark. That did not work at all, because the police have very good spotlights on their cars. I decided to at least wait until I had spoken to D. the next day before becoming a fugitive.
On Wednesday, June 7, I was released from Fairlawn rehab hospital. At home I continue to take steroid medication in pill form in tapering doses.
In the hospital I continued to read Nietzsche's Also Sprach Zarathustra (Thus spake Zarathustra), which I had started before going to Germany in order to help learn German. I read all of it by skimming through the hard parts. In some parts I have to look up a word or two in almost every line in order to understand it, but I got the general idea of the whole book. I am still reading it, a small part at a time with more frequent references to the dictionary.
I thought quite often of one of Nietzsche's most famous quotes: “What does not kill me makes me stronger.” I did not find it in Also Sprach Zarathustra so I began to wonder where it comes from. When I got home, I did a Web search. I found the quote in many places, most of which attributed it to Nietzsche, but only a few of them told which book it is from and at least one of those was wrong. It was sometimes translated as: “What does not kill us makes us stronger,” which is clearly just wrong. In German “mich” means me, not us.
It is maxim number eight from Götzen-Dämmerung (Twilight of the Idols).
The complete maxim is:
Aus der Kriegsschule des Lebens.
- Was mich nicht umbringt, macht mich stärker.
Sunday, July 23 through Wednesday, July 26, 2006: We had a good time walking around Berlin and going to museums. I was mostly using the walker in training wheel form, folded up and rolling along beside me. I was able to spend 4-5 hours each day walking or standing. The first day we walked a couple of kilometers from the hotel to Alexanderplatz and then figured out how to take the train back.
Thursday, July 27 through Saturday, July 29, 2006: In the middle of the night (Wed night / Thur morning), K. experienced pains in his abdomen. At first, we assumed this was a 24-hour digestive problem that would pass, but it did not. We stayed in the hotel for these three days. During this time, K. had one glass of apple juice each day plus water, but no food.
Sunday, July 30, 2006: We took our scheduled flight back from Germany — Berlin to Newark to Boston to home via airport van.
Monday, July 31, 2006: As soon as the office of K's doctor opened, I called reporting his digestive problems and his guess that he had a blocked intestine. The nurse practitioner said to go to the UMass Memorial emergency room. The first step was to get an X-ray of his abdomen, and that was the faster way to do that. We arrived at the emergency room sometime between 10 and 10:30am. About 2:00, it was K's turn and they took him in and did the X-ray. They let me into the room where he was around 2:45. There was a nurse checking on him occasionally. Mostly we were waiting for someone to look at the X-ray.
A doctor looked at the X-ray at 6pm, and then things started to happen because the X-ray indicated a serious problem; free air in his abdomen. This indicates some form of internal infection probably caused by a perforation in intestine or by an appendix problem. This also indicated an immediate need for exploratory surgery to address the problem and various doctors from the surgical team started to show up and examine K. The nurse inserted a tube into his nose and down into his stomach to drain it. He also gave K. some stuff through the tube which would show his digestive tract on an MRI. The next step was to wait as this stuff moved through his system. About 10:00pm or so, he was taken to the MRI area. They needed the MRI to pinpoint in more detail where the problem was than could be seen from the X-ray. About midnight, they moved him into the surgery preparation room, and they said the doctor was on his way in. I left to go home about 12:30am because the nurse said the operation would take between 2 to 4 hours. The doctor called me at home at 3:30am to say the operation was successful, but recovery would be slow. He also explained a few things about the operation, from which I mostly understood that the wound was left open to drain and that his small intestine was temporarily looped outside his abdomen. All this sounded serious, and it seemed to me that going to AMCIS would be a bad idea.
Tuesday, August 1, 2006: I canceled K's physical therapy appointment at Fairlawn. They were supposed to set him up with a cane since he seemed to not need the full functions of a walker anymore. I went to the hospital to visit K. He seemed to be doing fine, and convinced me to go to AMCIS. The doctor said that K. would not be released from the hospital until a day or two after I got back.
Wednesday, Aug 2 through Sunday, Aug 6, 2006: I was at AMCIS in Mexico from Wed through Sunday, and called K. in the hospital each evening at 6:30 when conference sessions were over. I arrived home at 2:30am Monday morning.
Monday, August 7, 2006: I went to see K. in the afternoon. One of the junior doctors came by to sew up his wound in the early evening.
Tuesday, August 8, 2006: K. was released from UMass Memorial around 12:30. Before release the dietician recommended a diet for K. The ostomy nurse came and introduced herself. She said we had not seen her because she was at re-certification training all last week. The visiting nurse coordinator also came and said a visiting nurse would be coming to the house to check on K. starting tomorrow. K. was not feeling too well and they gave him a pain killer, and then we went home. Around 4pm I called the doctor because K. was still not feeling well and nothing was flowing through his digestive system. The doctor told me to take him to the emergency room. It was after 7pm when the junior doctors saw him. About a half hour earlier, K. started to feel better, and the digestive block seemed to be gone. The junior doctors said that blockage could be an effect of the pain killer. We went back home.
Wednesday, August 9, 2006: A visiting nurse was supposed to come today. The visiting nurse supervisor called at 5pm and said they just found the information that they were supposed to see K. today, so she would send the evening nurse to check on him. The evening nurse came and did a general check, but she is not an ostomy nurse. She said the nurse that is supposed to see K. would come tomorrow.
Thursday, August 10, 2006: The nurse called in the morning and set up a time to come. She came and changed K's bag. He is set up for a visiting nurse on Mondays and Thursdays.
Wednesday, August 16, 2006: K. had a follow-up appointment with his surgeon. This surgeon sees patients on Wednesdays from 9-10, so K. had a 9:15 appointment. Since I had to be at work, I took him there at 9 and came back and got him at 10:30. The doctor would not remove his feeding tube because he drank a few swallows of juice before going to the doctor. The doctor said we knew he should be fasting before the visit but neither of us knew that. The doctor removed the stitches. I made another appointment for K. for the next Wednesday to have the tube removed. (It is unclear why they did not remove that tube before he left the hospital.) The doctor told him that Ensure was better than Carnation Instant breakfast for getting vitamins and protein, so I bought some of that.
Thursday, August 17, 2006: The visiting nurse removed the feeding tube even though K. was not fasting. On Monday she recommended keeping next Wednesday's appointment with the surgeon. In general, K. has a few good days when he is eating okay, and then a day when his digestive system is clogged and he does not eat.
Wednesday, Aug 23, 2006: I took K. to his 9:30 appointment with his surgeon and came back and picked him up at 11. The surgeon removed one remaining stitch, and told him to eat and exercise more. He also said some additional appointments would be set up for September for various tests.
Friday, Aug 25, 2006: K. had an appointment with his PCP. He seemed to have a urinary tract infection and the visiting nurse took a sample during her visit yesterday. The doctor gave K. a prescription for antibiotics for the infection and told him to eat more of whatever seemed to work well with his digestive system. K. seems to be getting better; mostly the bad days are gone, and we have figured out what he can eat and he is eating well and walking around the house without his walker.
K. has an appointment with his PCP in two weeks and has appointments for the three tests the surgeon wants during the second, third, and fourth weeks of September.
The manufacturers of ostomy supplies, in conjunction with the hospital, were very effecient in getting me a "starter kit". This contained a few bags and wafers, a good pair of scissors, and some literature. The literature consisted of glossy magazines and brochures that tell stories of happy people playing golf, jogging, and coaching football. I noticed that they did not have a single picture of the product they were selling.
On October 13, I went into the hospital again to have the ileostomy reversed. It wasn't fun, but it is done. My intestines are now pretty much like anyone else's. I still have several big scars on my belly.
Wow, you read to the end! Quantum field theory is about the most difficult thing I have ever encountered; it makes rocket science look like child's play or brain surgery (i.e. easy, how hard could it be?). I have never been able to play the violin, despite trying for several minutes straight once when I was about 15 years old.
– K
I have found that apples do very little to keep doctors away.
To keep doctors away you must say the magic words.
Don't tell anyone, but the magic words are "nosocomial",
"iatrogenic", and "lawyer".
I am not taking the IV drugs, in fact I am not doing much of anything.
Yesterday and the day before we walked for days around Branch Pond, as related here: Branch Pond Saga, 2013-05-03
I have been getting medically worse, though other things seem to be going well in other respects. The Branch Pond Saga (above) would be impossible today. I can walk to the coffee shop about a half mile away on mostly smooth sidewalks. I do that two or three times per week, depending upon the weather. I do it without falling down sometimes. Other times a fall once or twice and barely make it back home.
We went to a few Rainbow events, but never made it more than about fifty meters away from the car. I don't think I'll be doing much camping in the future.
I have started taking IV drugs. I go in once per year or so (I don't really know how often. I've only done it once so far.) I spend the day with a needle in my arm while they drip an "infusion" into it. It's a new drug. I asked about the two they wanted to prescribe ten years ago. The doctor said: "We don't use that anymore", so I guess I didn't really miss anything.
Actually, June 14 is a special day of the year for me, but not because of flag day. For many years I celebrated it two days before Bloomsday. On Bloomsday, (June 16) I walked all over Worcester with the Worcester County Poetry Association , reading aloud and listening to others read aloud, from James Joyce's Ulysses. As my walking got worse over the years I went from walking to bumming rides, but last year it didn't happen at all, because the organizer at the WCPA had other things to do.
It's getting too difficult even to walk to the first meeting place (Bancroft Tower), so from now on, my day to update history and old contacts is June 14, two days before South African Youth Day. Youth Day (June 16) is the anniversary of the Soweto Uprising of 1976.
For many years we have hosted the Love and Chocolate party as close to February 14 as possible. This year (2020) Valentine's Day was not convenient, so we had it February 29. That was the last party before the virus put a stop to all parties. Now that it has changed from a Valentine party to a Leap Day party, we might have to wait four years before doing it again.
I no longer walk outside with a walking stick; I use a four wheeled walker. Several times per week I walk "around the block", which is about a mile. It takes between 1 1/4 and 1 1/2 hours. I can't go off sidewalks. I drag my left foot so much that I wear a hole in my left shoe in about a month.
I don't go out for coffee anymore, but otherwise my life hasn't changed much. Instead of sitting in the coffee shop reading my books, I sit in my chair at home reading my books.
I have been living with the same woman for more than 45 years. Books, computers, and true love—that's what life is for me.
I have an appointment for another infusion of Ocrelizumab in July. The doctor says the virus will not be a problem, that is in a different wing of the hospital. After that I get another MRI to see if it is working.
My vision and walking are no better, but not a lot worse. I can read and write. In general, life is good, but I think my days of world travel and wilderness camping are over.
My last appointment at the infusion center was re-scheduled in a very annoying way. We got up early, went to the hospital, waited in line to check in, and then were told that the appointment had been canceled. No explanation of who, when, or why.
Maybe I should be celebrating Juneteenth (19) instead of Flag day (14).
The MS is about the same; I use a walker to walk around the block. I don't drive. The neurologist, the eye surgeon, and the dentist are all making appointments for me. It's a big job to get them changed so that they do not conflict.
The neurologist is suggesting that I can stop getting infusions soon. He says there is no active inflamation; the disease has stopped. This is not exactly a cure. The damage that has already been done is done. I am not young and strong again. I will not get better, but the MS may be done getting worse.
We don't have an exact date, but this summer is the fiftieth anniversary of D&K living together. I spend most days with my books and computers. The exception was a trip to North Vermont to see the total eclipse.
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