Saturday, January 29, 2011

Consistently and Constantly

What do you do when you're taking a medication and the side effects are worse than the benefit of the drug? And you have to take the drug consistently and constantly, meaning you have to take it at the same time every day and not skip a day. It's one of those drugs, or at least it's what the pharmaceutical company and doctor(s) say, that you can't skip one without problems.

Yet people miss them and they even provide instructions when you do. That's not my point here, it's the side effects. I'm taking a statin drug to lower my LDL or bad cholesterol for the 20% blockage in my pulmonary artery. And the side effects are making my life miserable, especially with the digestive system which I've written about and seemed to be improving, but this drug made it worse.

If it weren't for the physician to send me to a cardiologist as a precaution, we wouldn't have found the blockage. My heart (muscle) and arteries on and around the heart are fine, nothing wrong. The problem is just the pulmonary artery. But it started nearly 20 years ago and has been, or at least from what I know personally, been about the same for the 10 years.

And that's the question, when you do decide to discontinue a drug because you want to than the physicians and specialists say you should?

I have just over 2 months on the high dosage (one month of half dosage and then full dosage) before I have another evaluation, with a blood test, to see if it's working. If so, and toward the goal, they'll either discontinue the drug or lower the dosage. if not, then it's a decision of directions, continue the dosage and continue personal changes, medical intervention or something else I don't know.

That's the question. At 20%, it's significant but not significant to interfer with life that I can as I have make adjustments. The goal with the drug is something I've never done, get my cholesterol below the upper limit of normal (LDL < 100) and more so get it to about 70. If the drug can't lower it significantly, it's a question if or when it will get worse.

That's the conumdrum, we don't know what will happen until April, but until then the drug is unliveable on a daily basis. When my Dad was just a few years older, he was on 11 drugs for a variety of medical problems and just over half of the drugs were for countering the effects or interactions of the drugs. It turned him into a physical wreck.

And watching him then, I can't see becoming him. And even if it's just one drug, to me it's one drug too many. Yes, I take a number of supplements every day and have for nearly two decades. Some are the normal recommended supplements and some help with the body and aging. Their effects are small but over the years have kept things from getting worse beyond normal aging.

So, that's the question I face. I hate the side effects of the drug and the drug is one of choice. Necessary, probably and helpful, absolutely. But at a price of my daily life.

Wednesday, January 12, 2011

When an answer isn't

When is an answer isn't an answer? When the answer isn't an answer. When the answer is they know you're right from your perspective but they don't have anything to prove you wrong, only something to prove them right. Really.

Well, I went for my followup for the colonoscopy three weeks ago. Ok, They took the video, took some samples for biopies and whatever else they do when they shove the scope up your ass (fortunately you're sedated and likely asleep, I was). Anyway, despite the evidence my digestive system hasn't been normal for nearly 3 years, worse for about a year, and even worse for 3 month, there isn't anything obvious.

They didn't see any signs of an infection or other condition. The lab and biopsy results were normal. And so all they can offer was more of the same rhetoric about lifestyle changes, meaning watching foods and diet, drink less coffee, drink more water - the recommended 6-8 (8 oz) glasses per day except that's never been studied let alone proven to be beneficial as your body extracts water from any liquid and not just water itself, so any 6-8 glasses of liqiud will do - and get more exercise.

And above all, find a food regime that works and stick with it. Gee, that's sound medical advice from a Gastroenterologist? I mean I'm not doubting her or her advice, it's good and sound, but it's nothing I couldn't get from any physician or even a naturopathic doctor. Or even any health or nutritional specialist. And for that I paid good money.

The truth is, as she kinda' admitted, they really don't know very much about the digestive system beyond the obvious problems when they are obvious, like something physical or someting lab tests or biopies can find. Anything else is simply beyond their knowledge, partly because the system is complex and partly because the state of knowledge isn't very good beyond the obvious.

I'm sure she thinks I'm a nutcase, like many other nutcases, er people, she sees and hears about digestive problems. And that's why it's call Irritable Bowel Syndrome, the catch-all condition when they can't tell and can't determine anything wrong outside the experience of the patient. We're not dumb, although some medical professionals would like to think we're imagining things, and they're not stupid.

I could tell she knew she wasn't convincing me and it appeared to me she wasn't convinced of her own advice will help beyond the rhetoric already said. She's always kept asking if I had more questions like my expression was that obvious I'm not convinced, and I had to eventually say no and accept the reality this is what I will have to live with, or hope it improves by itself because they don't have anything to offer.

In the end we're just at a place we know what's wrong and they don't know what's wrong to find a treatment. There's a gap of knowledge in between our experience and their knowledge, and there is no bridge connecting both sides because the knowledge just doesn't exist to build it let alone to answer the questions.

And so until they do, I don't think I'll go back again unless it's really obvious to me it will be obvious to them.

Saturday, January 1, 2011

Memories Not Forgotten

We all have memories of our past, of places, people, events, situations, and whatever else we remember. Some memories fade away over time. Some don't and evolve into something resembling reality but not really. Some are clear as yesterday. And some just exist quietly in corners like shoeboxes in mental closest which accidently fall out and spill out into the consciousness.

One such memory is when I was 6. I have a visual memory. I remember places, scenes and landscapes, and this is no different. We lived in Wherry Housing on Mountain Home Air Force Base. We had moved there from Sculthorpe, England where we lived in the country (1952-55) and found ourselves in the southern Idaho desert.

We lived in the end townhouse of a row of them. It was a two-story house with a small backyard and a fuel oil tank in the back near the gate. The townhouse had two bedrooms and one bathroom upstairs and a master bedroom and bath on the first floor with a den and the rest of a normal house with a living room, dining room and kitchen.

My parents decided that my year-older sister and I were a bother to his work and her social life. So they emptied the den and gave it to us to play. My sister didn't want it and used her bedroom. I used to create cities with my cars. I collected those metal cars called Dinky Toys and Corgi Toys, and created cities with books and magazines and anything else I could find (really steal for awhile).

I stayed there for hours. It was then I realized, and really looking back where it started, I like being alone. I hated being in class, in groups or playing with others. I never changed from there, and all through my life have always been most comfortable being alone. I'm rarely lonely, which is a big difference, if you don't know.

In that room it was just me and my imagination. No one to interfer or intervene. No one to tell me what to do. My parents just left me there, and while in later years tried to get me to learn other things, like Cub Scouts, guitar lessons, etc., it always failed and I eventually started stuttering which lasted through high school and is always there which reminds me in some situations.

I still have the box of about 40+ metal cars which I added when we moved to Germany 3-plus years later. I loved Germany but missed that room. Outside the townhouse was a big open field, which was encircled by the rows of townhouses. It was designed to give kids a safe space to play. My brother and I though chose the desert out beyond the townhouse.

We loved to walk endlessly around the housing areas isolated between the enclaves of other developments, the school a mile away, other housing areas in the distance separated by more desert, and the commercial area with the base exchange and grocery and other places for adults to be and socialize, where my Mom went most days.

And out the main gate the long road to the town of Mountain Home where my brother went to high school, only an elementary and junior high school on the base. We often took our dog, Judy, a Boston Terrier, who was dumb as a post but loyal and obedient. He always came back when called so we never worried if he ran off chasing jack rabbits.

But it was always that room I remember most from that time, my world and universe. Everything I needed and wanted, at age 6. I don't miss it but often find myself in my own mental room with the same feeling, where I'm most comfortable, like sitting here writing this about a memory not forgotten.

Waking up

I've always had trouble waking up. Before it took just a few minutes but it's taking longer the older I get. You see, it's not the actual waking up that is the problem but opening my eyes. There are three body processes when you wake up. First your mind becomes alert to your surroundings and you realize you're awake. Then the body slows increases its function to be fully awake so you can get up.

The third, which surprises many people, is your eyes. They're on a separate mental-physical process than the mind and the body. They have to get the signal to open and stay open. Ever notice how you feel awake but just can't seem to hold your eyes open? That's it, but out of a regular sleep, it's the last to come awake.

And that's what's been the problem. When I was young it took only a minute or two. And in my forties, roughly three to five minutes where I'd think about the day ahead and then get up when the eyes opened and stayed open. Now is often 10-15 minutes and sometimes longer. The doctors say that happens with age for some people.

Like me. Gee, thanks. And so I lie in bed most morning, the mind alert and paying attention and the body ready for the day, but the eyes won't open, or they open and quickly close to stay close no matter how hard I try to hold them open. It's strange because this doesn't happen when I take a nap, all three wake up in seconds. Or when I get up in the middle of the night.

Only when it's morning. I lie there trying to decide if it's better to go back to sleep or wait it out for the eyes to come awake. They said it's a innate action so we can't really force it, except of course walking around trying to hold our eyes open which don't want to open yet. And that often leads to confrontations of the body, usually the toes, with immoveable objects and a sudden realization of the impact which automatically open the eyes.

You see the this process has some built-in reaction to open when faced with sudden events. Why we wake up to strange sounds. Why we wake up to get a glass of water or go to the bathroom. And why we wake up from a bad dream or nightmare and get up to relax to get back to sleep. It's the process when we wake up in the morning where it often has problems, and with me, increasing ones.

And yes, I wrote this post in my head while lying in bed with my eyes closed waiting for them to open to the day.