Sunday, February 7, 2010

Trust - what is it good for....everything!

There have been times when I was right and my doctor was wrong, and I saved my life. I try not to see it as an unfaithful partner who I can no longer trust, but as a human error. Not intentional or ego-driven like an affair, but, as a miss-interpretation about what was happening to my body. But, it is still hard to continue to go faithfully down the road to wellness together wondering if it will ever occur again. There is always some doubt in the back of my mind whether he (we) are making the best and right decisions. Should I switch to a new medicine protocol and face a new set of side-effects when I’m familiar with the ones I have gotten to know, skin cancers and all? Or, do I hope on a new train traveling down a new unfamiliar track, where, my skin cancers may subside, yet, there will be a new truck load of side effects to live with? So, how do I trust thee? Let me count the ways. I trust that you will know how to deal with these new side-effects and that you will know whether we should return to what is familiar. I trust that you have the latest information on these new medications and what I might be up against. I trust that if I take this new medication and something unforeseen happens to me, you will not throw up your arms and go, “wow, we’ve never seen this before.” This is what I trust. I also remind myself you are human and error is possible.

As an active fifteen year old, how was I to know that one day I would wake up feeling nauseous and tired and that the body I had trusted was breaking down before its expiration date. I trusted that if I took care of my body and I didn’t smoke, didn’t drink or use drugs, my body would stay strong and fit until old age. At fifteen I probably thought the worse thing that could happen to me was falling on the ski slope and breaking a leg. I guess I did not give much thought to teenagers getting life-threatening illnesses, falling into comas or contracting hepatitis. Those kinds of things happened to older folks.

So, where am I with trust today? That is a difficult question, but what that I believe helps me is that no matter what, I believe I will be OK. Even if I get sick or I'm in pain, I have a deep-seated belief that, this too shall pass. Sometimes, it's hard to write this truth when I see all the suffering in the world, but it has worked for me to hang onto this belief. It really comes down to what works for you. What do you believe about living with a chronic illness? What do you trust and what don't you trust? It's important to know this.
Be well in body, mind & spirit!

Friday, February 5, 2010

Trouble-Maker or Advocate?

At a recent doctor's appointment, I shared with my MD that I had looked up a medication on the internet. His reply was, "Oh, you're one of those who researches information on the internet. I hate when patients do that." He was saying it in a joking way, but I knew there was some truth behind what he was saying. Doctors don't want you to me informed, at least most of them would like you to come and not say a word. I believe they want you to nod yes and go along with whatever they say and be totally compliant. I figured after I left the treatment room, my doctor would put a big red mark in my chart stating, "Trouble-making patient." I learned a long time ago to speak up for myself, which means, to ask questions, know my choices and options and to do my own research. Whether it is concerning a new medication that I'd like to know the side-effects of, the pros and cons of a particular test, or the long-term effects of treatment, I want to be informed.

I asked my doctor if he would prefer if I just nodded my head yes and did everything he suggested without asking questions. He smiled and said, "no." I'm not sure if this was an honest answer.

So how do you become an advocate for yourself without being labeled a trouble-maker? It's a thin line. I believe if you know what you are talking about and you've done your research, you will gain your MD's respect. Responding with statements such as, "from what I understand, this medication..." Or, "Is there any reason why I'm not able to take the stress test on a treadmill versus a medication-induced stress test?" Keeping calm when speaking with your MD and not coming from a place of anger is also recommened. I suggest having your questions ready before hand, so you are prepared when you walk into your appointment. Sometimes it's difficult to do this, so I believe it is ok to say, "I'd really like to think about this." I am by no means suggesting that you not follow your doctor's recommendations, but what I am suggesting, is to take part in your health care decisions. To know your options and what choices you have. This way, you feel you have some power in what is taking place with your care and less like a victim.

As far as the red mark in my chart....well, I might have to think of that more as a mark of courage than as a negative branding! The more we speak up for ourselves, the more we can have control and a voice in our health wellness.
Be well in body, mind & spirit!