Archive for March, 2010

Become a Medical Researcher

Friday, March 26th, 2010

Many people with chronic illnesses have symptoms that are very difficult to live with. If you are one of them, here’s a suggestion for you: become a medical researcher, and investigate your disease and its symptoms.

The fact is that you already are a medical researcher. I’m sure you’ve learned what things to avoid, which may be certain foods, stress, cold weather, chemicals or cosmetics, etc. What I’m suggesting here is that you make your research more formal. Make a chart and track and record your symptoms, and do it often enough so that you don’t miss significant changes. I recommend that you also record the different factors you think may cause your symptoms to get better or worse.

Once you’re tracking your symptoms, you can experiment by trying different things, one at a time, and see whether your symptoms get better, get worse, or stay the same. There are lots of different things you can evaluate, from meditating, changing your diet, and trying differing natural treatments. You can get lots of ideas of things to try by doing some searching on the internet. I recommend that you do this in partnership with your doctor or healthcare provider.

As you probably know, most medical research in the United States is funded by drug companies, and since their goal is to make money, they won’t test things that don’t have the potential to be profitable if they turn out to be effective.

You, on the other hand, don’t have that restriction. Your sole goal is to get better, so you can try things that the vast majority of medical researchers never will, even though they have the potential to improve people’s symptoms, health, and quality of life significantly.

You can’t expect everything you try to help, but it’s very possible that some of the things you try will help a lot. And as a life coach for people with chronic illnesses for over seven years, I have found that people’s quality of life gets better as they take a more and more active role in lessening their symptoms and improving their health. I’m confident yours will too.

For more ideas for living well, sign up for my Biweekly Tips For How to Have a Better Life When You Have a Chronic Illness.

Tom Robinson helps people suffering with chronic illnesses stop struggling, and then he helps them find true happiness and joy – even when they don’t think there’s any to be found.

You’re the Boss

Tuesday, March 16th, 2010

Imagine this: You take your car to your mechanic because it has started making a strange noise. He listens to your short description of the new noise. He starts the engine and listens to it very briefly. Then, without asking for your approval, he tells you the repairs he’s going to make, tells you how much they are going to cost, and when he will do them. He gives you a form with a lot of fine print to sign and asks you for the keys.

If any mechanic treated you this way, you would either set him straight, or you would immediately walk out of the shop and look for a mechanic who explained the repairs he thought your car needed and why they were needed, and then asked for your approval before scheduling and making them.

We expect our mechanics to be straightforward and respectful, and to get our approval before they start to work on our cars because 1) we’re the customer, 2) we’re paying for the service, and 3) we – not our mechanic – will be using and relying on our car after the repairs are made.

The way I see it, the same principles and reasoning should apply to our interactions with our doctor. We’re the customer. We’re paying the bill (or if not, our insurance is and we’re paying the co-pays), and we, not our doctor, are the ones who will be using and relying on our bodies after the treatment is done.

Unfortunately, not all doctors are willing to acknowledge the fact that medical decisions are ultimately up to the patient. If yours isn’t, you may want to consider finding another one. I’ve had to do that myself more than once, including a time when I sent a letter describing the kind of doctor I was looking for to all 37 gastroenterologists within a 25 mile radius of where I lived (only two responded, but the one I ultimately chose was great).

I want to say here that I strongly prefer having a collaborative rather than a contentious relationship with my doctor. Doctors have had lots of training, and I want them on my medical team. But since it’s my body – and my life – I need to be the team leader.

For more ideas for living well, sign up for my Biweekly Tips For How to Have a Better Life When You Have a Chronic Illness.

Tom Robinson helps people suffering with chronic illnesses stop struggling, and then he helps them find true happiness and joy – even when they don’t think there’s any to be found.

This post is Tom’s March entry in the Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it here:

An Opportunity to Walk My Talk

Wednesday, March 10th, 2010

I know I’ve been very fortunate, because I’ve had relatively good health for most of the time since I was diagnosed with Crohn’s disease. As I describe in the page about this blog, my symptoms kept getting worse and worse during the first three years after my 1996 diagnosis, but in 1999 I found the combination of standard and alternative treatments that put my Crohn’s into remission and gave me my life back. Since then I’ve had a few fairly mild flares, but I’ve been drug and pain free for almost four years.

Because I’ve been so fortunate health-wise, it’s been a long time since I have needed to practice the suggestions I write about. Now I know those suggestions are good ones, because many people have told me how helpful they’ve been. But last week I found out firsthand that there is a big difference between recommending them to a client or describing them in posts, and being in major pain from a flare-up and struggling to do my best to use them.

The flare happened10 days ago and it turned my world upside down. After almost four years in remission, I had the mindset that for all intents and purposes I had beaten Crohn’s. But for some reason, some foods that hadn’t bothered me before (broccoli and almond cheese), triggered inflammation and spasms in the lower right side of my abdomen. While I can’t prove it, I’m convinced that the fragile emotional state I was in at the time was a major factor. But whatever the cause, all of a sudden I faced the same uncertain future that is all too common for people with chronic illnesses: would the pain lessen or would it get worse (it was a seven on a scale of one to ten, which was more than enough to keep me from getting much sleep that night)?

I did my best to follow my own advice, especially in giving myself lots of hugs and compassion. I would give myself a B+, maybe even an A- 🙂 I’m glad to say that my flare is almost completely behind me. But it was a great opportunity for me to use my own suggestions, and more than that it was a firsthand reminder of how truly difficult living with a chronic illness is for many people. I had a lot of compassion for you and them before; today I have even more.