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.

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.

Odds and Ends

I feel that there are a few items that I might comment upon that I have left hanging:

The first has to be the continuing comments about MagicJack; there have been a few complaints that were similar to my own, more about the way that these people conduct business than the nature of the product; then there have been a couple of really funny comments by people who work for the company, I hesitate to call them lackeys or lickspittles because I don’t know them other than through their abject admiration for the guy who is steamrolling the company. I wonder if they realize that anyone in the world can read their devotional messages to The Great Chief? I was hoping that the whole issue was behind me, but perhaps it has a ways to go yet.

On a positive note: For those who have been following my fibromyalgia (now re-labeled rheumatism by me) the decision to go and see my internist, to tell him that I wanted alternatives to what was not working, was a good one. He wrote the order that I have a consultation at the Chronic Pain Clinic as I have written previously; the first visit was an evaluation, the second was a series of meetings with the different specialties involved in pain management. I will be visiting the clinic once a week for up to five weeks.

The change in medicine to Cymbalta continues to give me back the energy and stability that I had lost when taking Lyrica; the side effects seem to be some acne and a definite absence of activity between my legs. That last thing would be of greater interest a decade or two or three previously, but I turn seventy this fall. I have had little or no knee and leg pain, my rheumatism has been at level 2 or less since beginning this stuff.

There will always be some degrees of pain and discomfort, no one is arguing that that will be the case; this management is to minimize what can be reduced, and to stop the remaining pain from being such a big part of my life. The biofeedback part is new to me although I have been doing breathing exercises as part of yoga, the feedback takes it a step or two beyond those simple exercises. There are a group of physical exercises which have made an improvement in how I feel in general, pain reduction in particular. So that’s pretty much how that is going.

Again, the big point was that I decided to request alternatives to what had stopped working; that is always the case, I hear too many bitching stories from people who are waiting for the people in the white coats to open the magic box and release the instant cure. There ain’t no instant cures except in children’s story books, the people in the white coats wait to hear when the patient wants something.

I write this in the midst of doing three loads of laundry, something I would have not had the energy to do at one time just a few weeks ago. A thunderstorm is roaring through, dropping a lot of water and thunderbolts; Bach’s piano and cello concertos are going on in the other room.

That’s it from Chicago this Friday morning.

Rheumatism

I don’t have the urge to write about anything momentous or heavy, as much as I enjoy doing that kind of thing; all I have today are comments about the new medication from the Chronic Pain Clinic.

This is the seventh day that I have been on Cymbalta, I took my last Lyrica on Friday evening; the doctor wants me to take 60 mg. each morning to see how it handles the rheumatism pain. Tomorrow I begin the half-day pain clinic sessions that may go on for up to five weeks; I don’t know what will go on there other than they told me to bring shorts and running shoes.

The Cymbalta seems to be handling the rheumatism pretty well, I don’t feel as creaky and tight as I had, the severe pain in my right knee and thigh is decreasing because I am exercising more, and better.

I drove a pain doctor, as passenger on Friday, who agreed that I should be calling whatever it is I have “rheumatism”, he said that I don’t fit the fibromyalgia profile which he described in sexist terms, he agreed that it was sexist but insisted that it was accurate; it confirmed my decision to have “rheumatism”. My pharmacist has been watching the “John Adams” series on HBO, he informed me that Adams also had rheumatism, for whatever that comparison is worth.

To be rid of the dizziness and fatigue is great, really great; I have yet to find out how much of this Medicare and Blue Cross will pay, so there may be a hammer ready to drop. This stuff ain’t approved across the board yet, so the insurance people are being reluctant.

As I said I don’t have much else going on today, just resting up after a long and tiring order on Saturday, but not a painful one as in the past; just charging my batteries on a cold and blustery spring day in Chicago.

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.

Pain Management Clinic

Half an hour ago I received a call from the Chronic Pain Care Center , they just had a cancellation and would I like to come in tomorrow at 8 a. m.? My answer was an immediate yes, the two month wait to see them has now become little more than half a day.

They had sent me a series of questionnaires about my pain, my health, my attitude that I was going to answer in June; so I had to do them this afternoon. To question closely the specifics of pain is unsettling, like most people I had made a mental accommodation, a day to day way of handling this thing, my special way; now I have described it by questionnaires for medical and psychological doctors. All my previous accommodations are upset and would like to be back to their almost once comfortable positions.

This is my first professional visit to pain specialists; not only do I expect that they have all the possible modes of handling whatever it is that I have, there is the thought that if they don’t have an answer, the answer, then I am in trouble. I have been avoiding, denying that my pain may be impossible to relieve, the rheumatism or fibromyalgia pain; in the back of my mind there was the belief that there is a cure, but if I don’t search for it I can maintain that belief, that fiction. That notion is about to be tested.

Now that I have put the idea down here, that there is or is not an answer I can see that there will probably be a complex answer, things that will relieve the pain and things that will assist me living with whatever pain is left over. This is not an uncomfortable afternoon.

A series of questions has to do with my significant other , they are insistent that I list someone in my life to whom I turn, this isn’t an easy question. I saw in the paper that a recent survey found just over half of all women are single, from that I assume that a fair number live alone, are divorced. For every divorced woman there has to have been a divorced man: that means there are is a big bunch of divorced guys out here, and many of them are not living with someone else, many of us have parents who are dead, more than a few are alienated from their children, or never had any, perhaps don’t have a close friend, haven’t had a close friend since they growing up. I don’t think that I am alone in having trouble naming this significant other person. I mention only men because that is what I happen to be part of, if someone wrote that there are a large number of women who would have trouble with that question I wouldn’t be surprised.

About a decade ago I had to go to an Emergency Room at 3 a. m. I had thought that there is nothing lonelier than going to the E. R. alone at 3 in the morning. Even when I had a wife who didn’t like me she would have felt it her duty to go with me; I think that there are a number of situations where an unhappy spouse gives in to duty, I remember when I did it for her, she for me. Now I sit alone.

I volunteer to sit with people who are about to die, I have yet to have a situation where there is a spouse present; children often are in denial about the situation, are present physically but not fully. There can be nothing fucking lonelier than sitting someplace and waiting to die; yet it is a necessary, the necessary, act of our life. It can be described as the second most common act, the first being when we become alive. I sit with these people in order that their loneliness is lessened.

Several people have commented that I have been writing about weird stuff, that I have difficulty writing about everyday things. Yes, that’s the truth. Is there anything more everyday than the knowledge that I am alive but someday will not be? I guess that I am writing weird stuff, and so what?

It is a beautiful spring afternoon in Chicago, daffodils and tulips are spots of strong color after months of gray and brown smudges. Almost everyone I have talked with in the last few days has mentioned how much they are enjoying our spring; it doesn’t last for long, but that makes it even more precious.

That is all I have time for now, it is time to open a beer and cook some orange roughy fillets, fingerling potatoes, green pepper, broccoli, a fair amount of olive oil and garlic are about to be ingested by this occasionally weird guy; there may be a third beer tonight.

Chicago Cop Story

I believe that I have a touch of the masochist about me: I was laying in a nice warm bed, with no alarm clock about to pounce, a couple of good books beside the bed (well they are not that good, but they are all I have right now), and what do I do but pull my body up and out, give the rheumatism reason to scream throughout my complete contraption in order to sit down in front of a blank screen and keyboard, to try to put down a word in front of another word, and then do it again in such a way that it makes some kind of sense. Does this not have the whiff of the lover of pain about it?

Five of us were sitting in the office last night after things had cooled down, sitting and waiting for the phone to ring or the clock to turn another cycle. I told everyone of my recent experience with the video camera on the corner of Ashland and Damen, about the five second rule for a turn on red, that the lesson cost me $100. Then we each related a Chicago cop story, some indignity or harassment by the people in blue; their stories were pretty lame, mine was the good one that I thought I’d try to put down here.

It was late afternoon in the summertime, I had just dropped a banker’s wife in evening dress off at Navy Pier, checking with my dispatcher I was told to head out to O’Hare to meet a flight. My walkie-talkie was still in my hand, hadn’t been set into its holster when I saw that in front of me was a Chicago cop. She was riding a Segway scooter, she was in the left of the two lanes of traffic, going at about a fast walking speed; she was driving no-hands, because she was eating a bag of popcorn, one hand holds the bag of popcorn, the other hand dips and grabs. My overwhelming concern was to not hit the cop, the paperwork following hitting a moving cop is not to be believed; so I am driving carefully, forced to pass on the right because she is in the left lane. I just want to get past and get out of there.

The cop looks over at me and yells through my open window, orders me to pull over to the curb. She follows me over, still on her scooter, still eating popcorn with both hands. This sergeant then threatens to write me up, give me a ticket because the law says that I cannot hold my walkie-talkie in my hand while driving. This from a cop who was driving no hands in the left lane, slowly; did I mention that she wasn’t wearing a safety helmet?

How does one react to this situation? here I am in one of the great democracies of the world, in one of the greatest cities in the world, on a beautiful summer evening–what is the appropriate reaction here? think quickly.

I say nothing, I make my face into an emotionless mask, I set the walkie-talkie in its holster, and again, I say not one word, not a squeak. After what seemed a year or two, or maybe it was a minute, the cop tells me not to do it again, and that I should get out of her sight. I drive away carefully, without reaction of any kind.

I am told by a friend on the force that I need not fear running into this sergeant again, she has been promoted to lieutenant, joining her husband in that rank.

I love this city, it entertains even as it infuriates; it is run by a guy who is pretty good at running a city even while corruption shows up daily in the newspapers, I just love living here.

Proof of spring

Buds have formed on the iris outside my window; I noticed their thickness as I went out to pick up the morning paper. I went without a jacket, just a shirt over my undershirt, jeans over my pajamas. The light air felt good and let me think that I might be able to open the windows again today; they were open yesterday for the first time since October, letting wind erase all that winter staleness. A previous tenant had been a smoker, something I didn’t know for about four months after I moved in; then the residue began to bleed through the paint, over the winter that fustiness was captured inside the apartment, a reminder of the decades when I smoked a pipe. Now it is gone, will be gone until next fall.

Relief of another kind came with my internist recommending that I go to the Pain Management Clinic of the Rehabilitation Institute , this option had been in the back of my mind for some months, but like many of us I had planned on taking a tablet three times a day and life will then be just right. This clinic employs the variety and combination that are available from a large teaching hospital, and they are not limited to old-line medical methods. Just knowing that I have an appointment, that a team will evaluate and suggest a plan for me is a relief in itself.

Just seeing the filling bud of the iris confirms that the hard winter is over, that a pleasant and warm time is ahead.

It would be good to have that feeling about friendship, about love, about the future; unlike spring, unlike better medical options there are human situations that have little or no promise, for those dull and lifeless futures I rely on that that I know cannot disappoint, that cannot be changed, that I found when I faced imminent death a decade ago. The knowledge and peace I experienced then will always be with me, was always there even when I was too obtuse to realize it. It is something that everyone has, that doesn’t come from outside, from another authority, from doing good acts or not; whenever I come across as a bit weird and preachy it is from this knowledge that transcends all religions and cults, has always done so.

I am as pleased as anyone to enjoy this change in seasons, as refreshed as the next person; but I am saying that it was something else that supplied happiness and truth during the long and cold winter, as it will during the next.

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.