So What Will It Feel Like?

Have you ever wondered what your next medical adventure really will be like? I mean how will they really feel during and afterwards? Nurses and doctors tell you things like "there may be some discomfort", or the ever popular "little pinch". Maybe you might feel "tired afterwards" or "possibly nauseous", or "a little pain" at the site that can be handled by "OTC acetaminophen or ibuprofen". But you really need prescription morphine for the pain, cant get out of bed for three days because of fatigue, or spend days running for the bathroom.

They never can tell you more, like the real truth. Bounded by HIPAA concerns or the simple fact that they have never experienced it themselves. Face it most of our medical professionals have never experienced the procedures they perform on patients. Sure they have had blood tests, injections, and more, but have they had your chemo protocol, surgery, or invasive procedure? Probably not.

Hence there is no way for them to tell you how you will feel before, during, and after, other than scared sh**less, because they really do not know.

I hate this. I have learned to research all medical procedures before I have them. I also look to friends and others who might have experienced it to find out what its like from the patient's perspective. (I am so 'healthy' my father, in his late 80s, asks if I have had any new procedure recommended for him.) I do not obsess about it but I do want a good idea of what something will be like.

I have learned some important things like do I really want to go by myself because I won't want to drive home. Or I can come close to passing out after in the knee injections. Or... the list goes on. So I have learned to ask questions and do my research.

Please stop changing your mind!

The news: saturated fats not bad, trans fats very bad. Now they tell us. Thank you.

Does this mean all old research will eventually be turned upside down and we can eat ice cream and chocolate every day? I find this very irritating. Its just not fair to all of us who make dietary choices now and then find out later they were wrong and we could have ignored the advice.

Actually what really annoys me is that this also happens with medical advice and it turns out whatever procedure you had was completely unnecessary.

But it is the price we pay for progress sometimes. Even though it is irritating.

Doing my research

Every so often, I get the good idea to get my medical reports and review them myself. I do this because people tell me I should have the copies of my test results. I try to do what I am told, am often curious, and too impatient to wait for the doctor to tell me at our next visit.

Then I take my little reports home with me and try to decipher them. Why is my RBC below normal? Answer it has never recovered since chemo and it is just under normal. Some of the other tests I do not really understand. I do some research and end up at medical articles where I need to go to med school to be able to decipher.

At some point, I always say to myself "Why am I doing this anyway?" Sometimes I convince myself I have some deadly disease or ailment that will kill me without immediate treatment. Other times I convince myself that I really am healthy with just a few bad test results.

But my point is that I do my research and feel I should more frequently get my test results and monitor them better. For example my last blood test included my C-Reactive protein measurement. This is what tells the level of my rheumatoid and whether I am experiencing a flare up or not.

Unfortunately I don't think I have enough of my blood test results. But need to dig through my files to see what they have been in the past so I can continue to track them. Then I can continue to do research and see if I am going to live or not.

Or I can just continue to self diagnose myself into every ailment known to man.

About all that research

We hear about new research again and again and again. We hear it is progress. We hear people hail it as the latest and greatest. But what does it all really mean? Sometimes I get frustrated by all the so called progress that never seems to help me... And then how often do the researchers stop and ask the people with the ailment what they think of the progress? I am not sure. The pharma companies always say its progress because it helps fatten their bottom line and they can feel good about helping more people. But what about us? I do know that the DOD has a program where their cancer research programs include consumers - meaning those who have had the ailment - as part of their proposal review program. But do others? I never know. I wish it was part of the information provided when results are revealed - that others who had the ailment can see the potential benefit by the progress as opposed to someone looking at a bottom line. I think I have been disappointed too many times by clinical trials for which I am not eligible and then research that doesn't help me. I do mean I get advice on what to eat, drink, do (or to avoid) but I am still waiting for that magic pill that improves my quality of life. I would like more research to ask those who benefit from it what they really want.

No surprise here: Institutional Corruption and the Pharmaceutical Industry

The systematic corruption of medical knowledge, ranging from clinical trials and new diagnostic categories through practice guidelines to physician prescribing practices, is highlighted in a special fall issue of the Journal of Law, Medicine & Ethics (JLME, 41:3). 

Okay, this was published last fall so you may call me a little slow. But the content, as much as I read (because there was so much more), clearly shows the issues. I recommend you start here and then read as much as you can (stomach).

I read that, I downloaded some articles and read them. I did not read them all. But I got the gist of it.

The systemic corruption, there term not mine, that leads to all sorts of on going problems and unethical practices. Look at this one sentence:

"....how pharmaceutical marketing also distorts medical practice, and how drug firms are even funding social network websites for doctors in order to quietly track their opinions on issues that affect their bottom lines."

And you thought NSA was bad about spying on US citizens.

This next bit was taken from one of the articles by Dr. Marc Rodwin:

We will see that the pharmaceutical industry’s own purposes are often undermined. In addition, pharmaceutical industry funding of election campaigns and lobbying skews the legislative process that sets pharmaceutical policy. Moreover, certain practices have corrupted medical research, the production of medical knowledge, the practice of medicine, drug safety, and the Food and Drug Administration’s oversight of pharmaceutical marketing.

Pharmaceutical firms have found ways to influence — and often corrupt — medical research and publications, and key firms and organizations that affect physicians’ clinical choices. These include: professional medical associations, continuing medical education programs, online professional networking groups, hospital administrators, insurers, organizations that create practice guidelines and diagnostic treatment categories, and patient advocacy organizations. These institutions in turn influence physicians in general and particularly influential physicians known as key opinion leaders.

So you wonder about the over priced medications that are promised to be miracles and then are pulled from the market because of previously unknown side effects. Perhaps the causes might lie in the truths uncovered here.