A Few Health Comments

A FEW HEALTH COMMENTS

A few minutes ago I searched this site for sleep apnea & cpap with few results; a couple of people complaining about having apnea, a technician explaining how sleep trials are done, a few people peddling whatever they can and are allowed. I am surprised by how few posts there are on this subject; I read this morning that 60% of diabetes sufferers probably have apnea as well; personal experience taught me that a good night’s sleep is essential in managing fibromyalgia; depression is influenced by fatigue from lack of sleep; most recently I found that heart failure, mine, probably is associated with apnea. Those are four big areas of health, I don’t know what these ailments cost but it has to be in the billions every year. There is the always present quality of life which cannot be measured so clearly.

This is what started me writing this post: I have had depression for the first sixty years of life; I had fibromyalgia for the last three decades; I am borderline diabetic; I was recently surprised by the onset of heart failure and a. fib.; recently came severe apnea.

My previous posts tell more than anyone would want to know about my depression and what I do to manage it. There are a few posts that describe how fibromyalgia is controlled with the help of the Chronic Pain Clinic at RIC; there are more posts on the heart business than can be of interest to anyone but myself; and now the apnea has been diagnosed and is being managed, 40 awakenings per hour are coming under control.

That all of these ailments and all of the managing methods are connected is obvious; that the sleep problems are common to all of them is known. In my happiness over the management of sleep problems I imagined that everyone in the world should be tested; a fantasy because not everyone wants to explore the ways that may make them feel better. It isn’t just men who avoid feeling right, there are a fair number of self-absorbed neurotic women who won’t search beyond their prejudices (herbals &c.).

I don’t expect anyone will change the way they handle their life because of my haranguing, and yet I do continue to nag every now and again. So many people might have better lives than they have if they had the courage to go at what is hurting them, spiritually, physically and psychologically.

I have known more than a few who have died through avoidance, died unnecessarily, and there will be so many more in the future. But damn it, I am not going to live a miserable life if I can help it.

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.

THE DONUT HOLE

I just don’t have an extra $1,200 in this year’s budget; that is what it will cost me extra out of pocket for Rx’s now that I am in the Medicare Rx donut hole , I still pay my monthly Blue Cross and Medicare payments, it is just that this is additional.

It took me a fair while to find that Cymbalta is the right drug for my fibromyalgia (30 years), and that it does great things for my mood disorders as well; now comes the decision that I have to believe many people are faced with making: Do I take less medicine? Do I search for a foreign source that might be problematic? Do I search for something generic that just might do the job? I just don’t have an extra $1,200 in this year’s budget: I still work and receive Social Security, I live on a pretty tight budget, one that was right for me until I was admitted to hospital with heart failure and then discovered that damned donut hole in my path.

Of course I had heard of it, and didn’t think that I would come anywhere near it, until I was admitted to hospital and then was off work for a few weeks. The surprise and shock of exploring for alternatives is something I could do without.

It is not that I am asking for disability or charity, I am not, I plan to continue working for a long time yet, it is just that my resources are less, that is why my budget is less. Something about this situation strikes me as not being right, that it is a bigger problem than was obvious; perhaps older people don’t post as many weblog comments and complaints, perhaps many of them are tired and have given up much as long term unemployed often give up. I don’t know why there isn’t more disturbance about this, maybe we have been living under conservative rule for too long and learned their lesson of not talking about things that disturb us. Anyway this is something I want others to be aware of more than we all are; this kind of decision is not the kind I want to be making at this point in life, I have other things about to be concerned.

I don’t know if my complaint comes from the right or the left, I tend to think it is neither, it is an aspect of conditions here and now, one that needs to be addressed.

Goals and answers

Yesterday was my fifth and last session at the Chronic Pain Clinic; everyone I met with asked the same question–if I had met my goals for the program? To each one I answered the same: I had no goals, I could have no goals because I was ignorant of what the program had to offer, what my body could accomplish, I can’t foresee the future. This didn’t sit easily with any of the therapists, as I well knew from previous discussions; they have forms to complete, statistics to be calculated, and they are trained to having goals in what they do. What I answered each of them was whether I was happy with what had happened at the Clinic, was I discontented over any part of the program?

I am pleased with every part of the program: with the attention and focus of the physicians, the alternate medication they offered; with the attitude and professional nature of the nurses; with the insights and understanding of the psychologists; with the advice and attention of the O. T. staff; with the exercises and rehabilitation offered by P. T.; with the increased management offered by the bio-feedback portion. All areas offered benefits that I attempted to absorb to the fullest. But I had no goals, I had only attitude, to get all that I could out of what this clinic was offering, to do whatever I could to minimize my pain and discomfort, to be open to whatever benefit might come along.

This is of course an attitude towards the spiritual or Spiritual life; I can’t say that I am in full communion with the Divine, who could know that? I cannot say what my Spiritual quest will give me, if I could then it wouldn’t be a quest for what is unknown to me now. This is an attitude that often results in anxiety of the unknown, it would be comfortable to know that if I prayed a certain number of times, if I did so many good works, if I followed a particular method I would gain enlightenment. That’d be a great thing if it was so, but it is not, it has never been the path to enlightenment, never will be; it may be the reason that the organized church is on the edge of irrelevancy, except for the lack of alternative. To be catholic is to be a good follower, it has never been anything else.

I received far more from the Pain Management Program than I could have predicted, and I am pleased that I did not have quantitative or qualitative goals that may have given me temporary pleasure but would have restricted my growth. The same can be said of my spiritual journey; I don’t know where it will lead, I have faith that good will result, but I have no knowledge of the future or of the infinity of the Spiritual. And that’s the way I have always been.

And that would be a difference between being a conservative and what I am.

Hatching an idea

I feel the need to write because I want to break through, to discover something that is just about here and needs a bit of a push.

That’s what I thought until I put those words down here; for weeks now I have been banging and crashing around in a search for the idea that is about to break out, the idea that needs release, I need to proclaim some kind of discovery. That’s what I though until I wrote that first paragraph, and until I looked at it long enough to realize that there is no great idea ready for hatching, that I have been planning a coming-out party when there is nothing new about to emerge. I was planning the party in order to have a party, nothing more than that ego trip of self-proclamation. I don’t have anything new to say, nothing new to address, nothing new to conquer; but I like the idea of thinking that I do.

Here is the background for what I am trying to say: I enjoyed writing a few satisfying posts during the winter, when they came out well I felt good, when a few people read them and commented I felt better; they were early morning discoveries that added meaning to my day, and then the well went dry. I had nothing to say other than the few things I had done, I have no new way of saying the old ideas, I have no message that can’t be found many other places. I missed that writing.

And then I began to make explanations for my frustration, some discovery was about to burst forth with my help; I felt that I now had a serious chore to find a new idea and share it with everyone—-but I don’t, it was a fool’s errand, and here is why.

The idea that tomorrow will be as today, that the continuum has no breaks or quantum jumps was depressing. I want the excitement of a brand new idea or challenge, and so I manufactured one, a Potemkin’s village made out of the following:

I am about to turn seventy this Halloween, a significant number, no longer will I be anything other than seventy and counting. The second thing is that the work I have been doing at the Chronic Pain Clinic is making me healthier than I have been in decades, a most unexpected result. The third thing is that I have been put back on anti-depressant medication for the pain, but it is also doing things for my mood, I had thought that anti-depressants were something that I had long got past, that my brain was making its own feel-good molecules and needed no assistance; this is known as denial. I am going backwards and forwards at the same time; healthier in body; and yet needing medication to alter my mood, just as I had used them years before.

I walked past a senior-center that the City of Chicago runs just around the corner from me, I was out doing my cardio-vascular exercises when I looked in through their window, saw the umpteen individuals sitting and doing what appeared to be board games. There was something important for me to see here; the Pain Clinic doesn’t care about my age other than for calculating my target heart beat, the subject doesn’t really come up over there; and yet here were people of age similar to mine hunched over boards, moving their markers, killing time and chatting. I couldn’t get that image out of my mind.

There are dozens of platitudes about age and aging that are as helpful as breasts on a boar; this is a complicated business that has no role models that fit me exactly; I don’t know if they fit anyone exactly, or do people fit themselves into the model of the geezer that is put before them. A good friend asked me recently what role model I was using for this next chapter of my adventure?, I have none.

John McCain is an active older guy, but his mind was frozen into the patterns of long ago, he is just a champion for what he thinks was right back then. There are older businessmen, but life has shown that I am no businessman, they take that stuff seriously, they really believe that acquisition and control are important. I have never written anything for publication, so don’t know that road enough to find my way very far down it. I never earned a college degree, could never figure out which direction to go there nor reason to expend all of that energy; I was too young and unformed. I can’t find a future down any of those paths.

What I am trying to say is that I had erected a monument to being a person of a certain age who should be acting and feeling a certain age—-and the monument was made of cardboard. The new idea that I have been incubating is that there is no new idea, no roadside marker telling me to change my ways to those of someone who should be getting ready to shut down, preparing to wrap it up, or in love with the past. There may have been a valid sign years ago when bodies wore out quicker, minds could be in love with the past; but I don’t find that to be so now.

I don’t know if and what changes I will find in life as I go on, but I am beginning to think that there will be less than I thought, that the jokes of old age may be becoming passé.

I do feel better, clearer for having written this; but it isn’t over, this is the first draft of an attitude that I need to install in my soul, I hope to refine it.

Why write?

I have not felt the urge to put anything down here recently, for no reason in particular except that I have been focusing on the pain clinic and the variety of homework required. It is easy to be diverted from writing, there are always more reasons not to write than to sit here and figure out what the next word ought to be; there are hundreds of quotes from writers on just that, in the end there is the simple rule that writers write .

Taking medicine is the easiest part of handling pain and discomfort, to change the behaviors that have either caused the pain or have grown up to protect it is difficult. I haven’t done any exercise for my heart and vessels in a long long time, since I injured my knee; as a result I don’t have a lot of endurance, I become fatigued quickly. It was easy to blame the fatigue on Lyrica, but when Cymbalta caused the same problem I began to wonder. Reading the list of side effects for almost anything it is easy to find what I am looking for, someone has reported fatigue somewhere the line, and I seconded that effect.

There is a growing list and daily log of stretching and strengthening exercises that will protect me from injury and discomfort, these are new to me, and none of them is easy if I am doing them correctly. But I can feel the improvement, it feels pretty good.

The reason I was not writing was not the time that I devote to exercise, it is that I have to think in different ways, additional ways. I feel natural when thinking and writing about philosophy or theology, the nature of the religious experience, the agonies of existential being and becoming; all that stuff fits well into who I am. The business of taking care of this body has been neglected, and I paid the price of neglect; perhaps I can incorporate these two areas of who I am together. Writing this helps that happen.

My Lyrica Adventure is Ending

It looks as if I am approaching the end of my adventure with Lyrica, it is to be replaced by Cymbalta. I gave it a good try from early August of last year until now, it was effective at times, ineffective at others; but it is the side effects that make me happy to say goodbye to Lyrica. I have had several hundred people read of my experiences with Lyrica, a number of them have sent me messages; my overall impression is that it is the dizziness and fatigue that keep people away from this drug.

Cymbalta works differently than the Lyrica, it combines the effects of boosting two neurotransmitters, giving some kind of synergistic effect that relieves rheumatism/fibromyalgia pain. Anyone who is interested can find more information on the web. The side effects of Cymbalta may be minor nausea I am told, there may also be some dry mouth effect. I think it acts as two anti-depressants in one, although I don’t need anything for depression, that is how I remember their explanation, I really don’t care too much how, just if.

This is the first time I have been to a pain clinic; I was interviewed by a nurse, a physician and a shrink over a period of about three hours. Besides changing medication I will begin attending a pain clinic weekly; the clinic advises on how to handle pain, a cognitive approach. One thing that struck me about this morning is that all three people asked about abuse, had I been abused, have I ever abused another; I had some things from my childhood that they found noteworthy, what will become of that I don’t know right now.

It is good to feel the support of a team that treats only pain; I have made a more detailed description of my situation than I could ever have imagined, and they understood my nuances.

I gave Lyrica a good try, I will give Cymbalta an equally good try, I will attend these clinics and get out of them what I can. I certainly am not going to miss being dizzy and tired, perhaps my half a dozen naps a day will diminish. For those fibromyalgia sufferers who have read my stuff I will try to keep you up to date on what is happening with this new approach; it is about time that we have have several alternatives, that we have professionals who now understand and focus on what is going on. I always have hope, perhaps a little optimism is in order here as well.

Lyrica versus rheumatism

I was reluctant to start writing this post because much of what I wrote earlier isn’t so anymore; I have been having consistent pain for a few weeks now, despite the Lyrica.

I am at 375 mg. per day, with 3 grams of acetaminophen; I have pain that has caused me to miss work, that is present for much of my waking hours, that seems irrelevant to whatever level of medications I am taking. This bout began slowly about a month ago when I was at 300 mg. of Lyrica, I increased the dosage, for a while I was at the maximum of 450 mg. At that maximum dose I find it difficult to work, to feel anything but fatigue and dizziness.

For the last week or so I have been at pain level 6 and above, for hours. Pain from old injuries has returned.

Today I saw my internist who thinks that the only alternative is the pain management department at the Rehabilitation Institute of Chicago . The first available appointment is in the middle of June, it will be with a psychologist and a physician for about 3 hours. This place has a good reputation, I am hopeful that something good will come out of it. I will continue to take both the Lyrica and the acetaminophen because I have no reason to stop.

For those of you who have been following my progress with this drug since last summer I can only say what I have always said: This is how I feel, this is what I take, this has been the result. The explanation of fibromyalgia that was given to me by a neurologist may still hold true, but it is unimportant, interesting yes, important no.

The good news about chronic pain is that there is some progress, which makes for more research, which makes for hope.

Spring morning

There are mornings when it seems impossible that I will be able to work in the afternoon, this is one of them. It has become predictable that if I work a hard shift one day I am going to have a high level of pain and fatigue the next, I won’t bounce back as I used to. I feel aches and sharp pains from everywhere, all stations are reporting in; and I feel very tired.

Yesterday I made sure that I did all the exercises, walked for about a mile, then worked until past midnight; this morning is rough. I took a full load of medication the first thing this morning, perhaps everything will turn better by afternoon. Meanwhile I will feel whatever it is that is going on; and worry about the future.

It is a tough thing to understand that I cannot bounce back, have the stamina to be who I was; it is a tough thing to figure out how I am going to be who I will be for the future. I need to work, have always worked, need both the work and the money. It is a really tough, but important, thing to make the most of where I am right now, take advantage of what I have learned, how I have changed, what I know that is different than what I knew before.

On the other hand I am in a pretty good mood; I have recently been bringing myself around to knowing and accepting how others are, what they are about, than I used to be. Living a critical and judgmental life is lousy, it brings disappointment and isolation, it takes a lot of energy to find and point out the failures in others. This business of being judgmental comes from a bad source within me, or more accurately it comes from the absence of a good idea somewhere deep in my soul.

To change how I see the world I needed to find that sour idea that put the judgmental and unloving tint on everything, find it and replace it with one that works better, that makes me happy, that feels a right fit. This is what I have been about lately, it is a big job, one that isn’t quite finished, a private piece of work that ordinarily I wouldn’t write about; but why not? I can’t think of how I might be embarrassed by admitting this little thing.

I have intuitive knowledge that much of what is fibromyalgia, blood pressure, general healthiness is connected with how I feel, how I see the world, how I process whatever it is that is going on–that everything is connected. I won’t be so foolish as to think that a good and loving attitude will keep me from becoming sick and dying, nor will it put off that date; it is something other than that, it is that whatever comes down the pike I am more likely to treat it as it really is, enjoy it, and then get on with whatever is coming next. Being healthy is different than having a body without pain, being healthy is knowing something special, something that connects all of this stuff, as I said it is an intuitive thing; which means I could be full of bullshit.

I’d better proof-read this and publish it before I realize that I have been more open than I had planned. Finish the coffee, wait for the medicine to kick in, read Billy Bathgate by E. L. Doctorow, and hope that by mid-afternoon I’ll feel a little better than right now.

That’s the way it is this early spring morning after the storm, when everything is drying out, bright sky and a light wind will soon get rid of the surface moisture, will remind us of all that we are in the middle of springtime again.