A NEW ATTITUDE

A NEW ATTITUDE

I had thought for quite a while now that there is nothing new in the area of feelings and attitudes, now I am not so sure that what I knew to be true is so. Here is what has happened so far:

Until about two weeks ago it looked as if I could expect to live another three or four years; this is from the statistics for people who have what I have, and is a number not too far from the average expectancy for all men in this country. I am well aware that these statistics imply and I intend to do anything that I can to come out on the far side of that bell-curve; I also found the study that found people with heart failure often over estimate how long they have to go. I had asked a few medical people, found more than a few articles online that all said about the same thing. My chore had been to get my head around that notion, to accept what was and then to get on with my life.

As I wrote a week or so ago I had an appointment with someone who discovered that I have severe apnea, but that with treatment I can expect to add perhaps four years to this cruise that I am on. And one other thing, he now has probable cause for something that I had been told many times was idiopathic. Treatable and redeeming–quantity and quality.

In effect I have just have just been offered a doubling of my expectancy; this idea is taking a while to root in my cranium and germinate, but it will. There are events and situations all through life that cause feelings and attitudes; except that this business is different, what I am feeling and how I am seeing the world is not quite like any I have ever experienced. I am not ready to say that this is unique, it might just be a variation on one or more, I just can’t say yet.

Obviously I am happy with the news, I have long ago discarded any wish to be dead notions; have reached the conclusion that whatever pains and discomfort come along, no matter how intense, they cannot overwhelm that of being, of becoming. This new thing is a testimony to perseverance, to scratching at the tunnel face until the gold vein is completely discovered; and for that I am relieved, perhaps more than a bit smug. This that I have just received is a gift, more to God than from; but it is such an overwhelming gift that no words are appropriate. Perhaps it would be as if someone gave me a new car–then I see that it is a brand-new Rolls convertible; what the hell do you do with such a thing! A great problem to work at as I go on.

I may write more about this as I figure it out and believe it would be of interest to someone, anyone else. Let me add one more thing: To say that this is more a gift to God than from God is because I know that without man God is irrelevant; He is what we are about, that makes us what we are.

Fibromyalgia, etc.

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In looking for a subject of a five-minute writing exercise I realized that it has been a while since I passed along how I am doing with my fibromyalgia; as I wrote previously I have had it for over three decades, could find no way to manage it and was suffering quite a bit when I heard about Lyrica which I tried for most of one year. The drunken side effects became too much and I got a physician’s order to go to the Pain Clinic at RIC; they immediately put me on Cymbalta even though the approval had not yet come through from FDA—it relieved my pain within two days of beginning. Along with the other therapies from the clinic I have been pretty much fibromyalgia free since the middle of last July. I almost forgot to list the side effects because I only have one, and I can live with it alright.

Not only does it help me manage the pain it is good for my mood; those of us who have fibromyalgia probably have depression lurking around the corner and paying the occasional visit. The double acting whatever it does has helped there as well; recently I was found to have heart failure and concurrent to that a major family problem, both are under control as much as is possible, my mood through all of this has been the vehicle that carried me. As with any illness more than half of it is a mind game, that is a condensation of my latest on the field action.

Fibromyalgia, etc.

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In looking for a subject of a five-minute writing exercise I realized that it has been a while since I passed along how I am doing with my fibromyalgia; as I wrote previously I have had it for over three decades, could find no way to manage it and was suffering quite a bit when I heard about Lyrica which I tried for most of one year. The drunken side effects became too much and I got a physician’s order to go to the Pain Clinic at RIC; they immediately put me on Cymbalta even though the approval had not yet come through from FDA—it relieved my pain within two days of beginning. Along with the other therapies from the clinic I have been pretty much fibromyalgia free since the middle of last July. I almost forgot to list the side effects because I only have one, and I can live with it alright.

Not only does it help me manage the pain it is good for my mood; those of us who have fibromyalgia probably have depression lurking around the corner and paying the occasional visit. The double acting whatever it does has helped there as well; recently I was found to have heart failure and concurrent to that a major family problem, both are under control as much as is possible, my mood through all of this has been the vehicle that carried me. As with any illness more than half of it is a mind game, that is a condensation of my latest on the field action.

Another gray day

A gray morning following the gray day of Thursday, the forecast for today is gray; does this morning reflect a mood or does it cause it?

If the day was bright and warm, if birds were singing and people were out and around, doing spring things in the warm sunlight; if that was the day would a mood be different?

Both of the above are examples of my superficial mood, one that has no more substance than the underwear I put on today and the underwear I put on yesterday, or that I will put on tomorrow. I have automatically put on the mood of this gray, cold morning, I have let what is there determine what is here. I have forgotten earlier comments about the depth and layers of our being, that I am more than the superficial and shallow; when perhaps I am not so much.

There is nothing going on right now that is bright, nothing that will bring excitement or surprise; isn’t that the definition of a ‘gray day’?

I know that what I have just written is wrong. We are in a gray time, the only brightness in the sky comes from fireworks that last ten seconds before becoming a wisp of dirty smoke. The forecast doesn’t have promise, and that’s the way it is. Perhaps here is an opportunity to see the difference between a series of gray days and the defeat of depression; a chance to realize again that we are more than bright days and sunny beaches, that we have always been more than that.

I hope that beautiful weather will come soon, no one will enjoy being out in it more than I will; but if it doesn’t come soon or at all we will not be changed, the only difference will be putting on long winter underwear or light and roomy boxer shorts. Nothing more important than that.

Visiting Bert

I didn’t visit Bert in the home last week; my fibromyalgia was acting up and I wasn’t moving around very much, it is now under some control, the pain level is low. I went out to see him this morning during the daily ‘activities period’ that I describe recently; he wasn’t sitting in the circle nor out in the hall watching. I found the floor nurse who told me that he was resting and shouldn’t be disturbed, she also told me that he had just returned from the hospital. She then told me that she was busy and had to cut our conversation short.

One of the toughest parts of hospice work is that I am not in the circle of knowledge, by law I am not entitled to read a chart, ask about the state of health of a patient, nor am I in ordinary contact with relatives. This anonymity leaves me in the dark here; my friend Bert has had something happen that required a hospital stay, and I am left to speculate without any other information. What if he is close to the end? When should I return? Aren’t I entitled to know something about my new friend?

The answer to the latter is I am not entitled. As for the other two questions I have no guidance. This has been a difficult morning.

I was talking to a priest last week, we were discussing doing hospital and hospice visiting: he said that he found that going home alone made the visitation work impossible for him, so he found other things to do. I am not about to give this work up, but I sit here alone knowing just what he meant.

There is a local rumor: spring may come. Rumors should always be taken with a touch of skepticism, this year the skepticism has more than a touch of cynicism to it; spring ordinarily lasts about 72 hours here in Chicago, then we have full blown humid summer; this could be an even shorter spring season.

My landlord had me remove the bird feeder, he doesn’t want to attract birds onto his little part of the world; the feeder was fun while it lasted, I was able to write about it occasionally, I will find something else to write about.

I have started to write stories; I have put down a number of ideas for them, have started one that is about being a chauffeur; writing stories is slow and difficult work, especially when I want it to flow naturally and seem easy.

Making Soup

If your larder contains a bushel of broccoli and a bushel of chicken bones, and you are hungry, there is a pretty good chance that you will be eating broccoli soup for dinner. The protein from the marrow of the bones satisfies appetite, and it’s smooth texture feels good going down the gullet. The broccoli has its particular flavor, a strong green color that looks good in the bowl; animal protein combined with vegetables works in all the ways necessary for a good dish.

I have been thinking of the governor who is about not to be governor, who has made an interesting dish so far, perhaps he will continue in the kitchen, make other meals, explore other flavors; it really isn’t important anymore, he was only important in that he governed, now he doesn’t govern, what he makes in the kitchen now is for private consumption.

There are a couple of things to keep in mind when making soup: Cook the vegetables until they are just at the height of taste and color, quench them in cold water if necessary to keep from overcooking. Watch out handling the stock, whether beef or chicken, stock is very good for growing bugs, laboratories use it to grow bugs; keep the stock below 38º F or above 145ºF, don’t let it cool on the counter, use the fridge. When the ads suggest serving soup piping hot, the idea of keeping the bug population low is behind that suggestion.

Here is a method for seasoning soups and sauces: Don’t add any seasoning until after the soup is made, this includes salt. Salt has the property of bringing out the main flavor of the soup, it will be responsible for making the tomato soup have the maximum tomato flavor. Pepper and the other seasonings should be considered as accessories, as compliments, never the reason for the soup. Salt is added until as much of the tomato flavor is there as possible, beyond that the soup will taste salty; so how do you know when the height of flavor is reached? Put a few tablespoons of the unseasoned soup in a small glass, taste it, remember that taste, add some salt, taste it, remember that taste, repeat. You will know when the soup tastes salty, remember how it tasted just before that, that will be your target for the potful; add salt to the pot, taste, compare the taste to what you remember from before. Now you see some of the craft of cooking.

If you have forgotten the taste at the height you can reverse the action by adding a few more tablespoons of soup to your glass, do the experiment again.

There are many more things I could say about soup, but maybe I should leave it right here for now; if you practice the above you will feel good about your ability, about cooking in general, it will be your dish for your table.

There has been letters and comments in the newspapers about the effect on the children of what the father did, what parents do; certainly everything that parents do leaves a mark of some kind on a child, everything my parents did, your parents did, that is the nature of being a child and a parent. If the kids are hungry enough they will make a nourishing life from what they have; this is the nature of becoming an adult.

I happen to have fibromyalgia and anxiety, among other ingredients: I do a fair amount of introspection and meditation because of how I am, the result of inner knowledge is something that I could not have known otherwise. I once came within minutes of dying, I didn’t die but I did come to understand the presence of the spirit, a religious experience, a something or other that has always been present, is present in each one of us; this is something I would not have had otherwise.

In cooking school I was given Bibb lettuce, from which I made a summer soup; lettuce doesn’t have a great deal of flavor, I needed to have a light touch with the salt and the other seasonings, I didn’t want to overwhelm that subtle lettuce flavor. I remember that it tasted pretty good, I had hoped to make tomato, everyone does, but lettuce is what I was given, that is what I used.

To make a good soup one needs ingredients, more importantly one has to want to eat, has to have desire for enjoyment.

Lyrica, fibromyalgia, depression

I have been in a fair amount of discomfort and pain recently, level 8; so I have increased my dosage to 300 mg. of Lyrica daily, 75 X 4; I also take 2,000 mg. of acetaminophen, 500 X 4, because the combination has worked for me previously. It will be a while before I try to reduce the dosage again. This continues to be a balance between unwanted effects and pain relief, and that’s the way it seems it will be.I have been thinking about depression and fibromyalgia, not as any kind of physician nor psychiatrist, but as to another possible connection. That there was, and to some extent still is, not much that many can be done to relieve fibromyalgia, nor depression, this ends up us a situation of a doctor who may not hold frustration at bay, who may signal that it would be better if you shut up or went away. Doctors want to fix things, that’s why they do what they do, have always done; given something that is vague, untreatable and leaves the patient complaining—that doesn’t sit well with a lot of physicians.

I have written about the doctor thing before, it comes as no surprise to anyone who has had fibromyalgia for any length of time; it comes from good discussions with doctors who admit to their frustration.

What about people who have whatever this is and believe that they can fix it when physicians can’t? The chances of me finding a cure for my pain that the neurologists, rheumatologists, internists can’t find is going to be as close to zero as one can be. To think that Pfizer, Lily, Abbott, etc., have not looked closely at every root, leaf, flower, berry that exists is to ignore what they do for a living. All of my life I have known people who spend money and hope on some MIRACLE CUREor other, I have been one of those people at times. If it really was a cure the person in the white coat would know, that is what they do, that is what they have spent thousands of hours learning.

Now I am no apologist for bad medicine; not too long ago I fired an internist who failed to order me a routine test, one that would have found that I had cancer, he is gone, and so is the cancer for now. I used that opportunity to ask around about who the best internist was at the teaching hospital near me, that is my doctor now.

Here’s is what I am getting at this morning: If I believe that I can control something that is beyond my control I am going to end up in a bad place, I will end up with depression. If I think that I will find a cure for something, a cure that the physicians don’t know about, I am going to end up frustrated, angry, and then I will be adding depression to the pain and discomfort of fibromyalgia. As any who have read my previous stuff know I do not give up, have not surrendered, am not passive; I do what I can and I try to accept what is. It ain’t always easy nor straightforward, but I do try.

This Lyrica does some good, it does a lot of other things as well, that is the nature of the stuff; I will get from it what I can, but I will not cry and bitch about what I cannot, or I’ll try to recognize when I am crying and bitching. I do not want a return to depression, especially of my own making.

This idea became real in another way recently, I had, have, a small disagreement with my landlord, something that he is handling in an emotional and overblown way— that is his way, that is how he is. It is not for me to get caught up in whatever makes him act beyond what is appropriate, that is his thing, a thing that I can observe, find interesting, but do not control. If it becomes more than a nuisance I can move out or exercise what is written in my lease.

What I am bloviating this bright, warm morning is don’t get into the control-freak situation of believing that you can change the world when you can’t, nor can I; it is just the world. I have never known a happy control-freak, I was one for decades, happiness and the need for control don’t inhabit the same soul.

Fibromyalgia Lyrica March 3

I notice that a number of people follow what I write about my Lyrica experience so I feel an obligation to write of changes in my situation, this is the latest:The last three or four days I have had pain at levels 5 through 8, add to that is my anxiety level seems somewhat higher. Today I am increasing my dosage to 300 mg., 75 mg. q. i. d., along with 1,500 mg. of acetaminophen. It seems to be working already.

I write this after 10 p. m. of the first day at the new level, actually I haven’t taken the last capsule, will do so at bedtime; I have taken 225 mg. so far, the next will bring it to 300. I feel better already.

The primary pressure to lower dosages is fatigue, it is a stronger effect than the dizziness or drowsiness; I’ll use the higher dosage until the discomfort goes away, then I’ll titrate lower, and see how it goes then. I think that if I can manage pain by occasional changes I’ll be alright. The fatigue affects my mood, makes me feel helpless and is depressing.

My pharmacist told me that CYMBALTA has had some good pain relief results, this is old news, I first heard of this kind of thing thirty years ago, perhaps this new stuff will be better; let’s watch what they find, see if there is an alternative to Lyrica.

That’s all I have about fibromyalgia and Lyrica today; I continue to be pleased that there is this first medication, something for us that has measurable results.

A little warmer weather wouldn’t hurt either; that we have been having stormy and variable weather lately doesn’t help the situation.

The cupboard is empty

For a couple of months now I was in a great habit: I would lay in bed very early, and something would come to me that I would write about. That was it, the habit arrived, I followed it, and did it again the next morning.

I wrote because it felt good to put down things that came clear from my center, as honest as anytime in my life; I wrote about life, death, joy, sadness, disappointment, and the brown sparrows outside my window. A few people read what I was writing, that made it better, a few wrote to me about any number of things, that was even better.

Recently I found my cupboard empty; something bad has barged into my warehouse and destroyed whatever it is that lets me write about cancer and sparrows and acceptance. I suppose that a few of us have old, bad ideas and attitudes that have the ability to stop us going forward sometimes; that is what is going on with me right now, that I am confronting.

I am writing this today for two reasons: It is good to admit to the world and myself when something isn’t going right, just as it is good to put down words when they flow well. The other reason is to suggest to anyone else that if they have a problem that impedes, you ought to consider facing it.

I hope to return to writing that stuff that I did for a couple of months, it was fun to write, good to know that people read it; I don’t know if that will return, but I am doing what I can.

February 16 Fibromyalgia, Lyrica

Yesterday I sent a message to my internist saying that I had reduced my Lyrica dosage downward; I take a total of 225 mg. per day, 150 at night, 150 in the morning. Not too many weeks ago I had noted here that I didn’t think that I could go down from the 300 level, now I feel differently. I take acetaminophen on an almost regular basis, no more than 1,000 mg. per day. I started, in August, at 75 mg., moved quickly up to the maximum recommendation of 450 mg., then began this slow reduction.

There are two motives for doing this: The first remains that I don’t want to take any more medicine than I have to. That is why I stay away from the supplement counter at the drugstore, the innumerable recommendations of friends and associates, none of whom are healthier than I am. If a drug is needed I want a person in a white coat, who works at a teaching hospital, to write the order and attach a signature. The popular sneer aimed at western-medicine comes from a political or psychological need, driven by poor logic and an absence of science. The psychological need is one for control, the unexamined belief that one should take control, be in charge, fight the unpleasant, etc. The logical mistake is that one we were taught in Logic class, post hoc ergo proctor hoc;if my reader is a follower of self-medication that old logical fallacy is something you had better stay away from, it is about your fallacy.

My second reason for trying to reduce the dosage is the side effect; currently it is this feeling of fatigue that colors everything I do, or don’t do. It has destroyed my social life, not that my social life was a difficult target for destruction, but there was something there. I want to be rid of this malaise.

Dizziness continues at a low level, for short periods; it is far from being the overwhelming problem it was at the start of this therapy in August.

I continue to see what I call repairgoing on, I use that word whenever I write or talk about this, no one has come along to contradict me, so I continue with it.

That is my state of treatment as of today, it will change, I will try to make a record of it here.