I think there's a common thread that runs among those of us who live our lives normally. We research our diseases, keep copies of our labs and research. We're probably not considered the most compliant patients either! We hand doctors highlighted journal articles, question "normal" labs (and back up our questions with documentation) and suggest more up to date treatments and protocols than are being offered. Most doctors need a little boost of knowledge because they treat so few Addison's patients. There are so few of us that we can't expect them to read the latest journal articles about our condition on their own. We have to find the info and share it with them so they can treat well. We also ask to be tested and treated for comorbid conditions. Most importantly none of us are willing to settle for feeling ok if we can feel normal.
What I wrote above got me wondering if those of us who consider ourselves to feel well also consider ourselves risk takers? If you're a "healthy" person with chronic illness, do you consider yourself a risk taker? I can think of a few of you that I know personally, through email, phone calls and/or blogs that I would consider risk takers and you're all well despite a chronic illness or two or three.
Risk taker needs a definition: someone who risks loss or injury in the hope of gain or excitement
Are you unafraid to speak up to your doctor, follow your instincts with educated choices or ask the medical profession for what you want and need in order to gain good health despite the potential risks?
Hmmm, I actually have a naturally anxious personality type and remember being afraid through most of my childhood. However I got fed up with that, so now I guess I do things that scare me, so in that respect I guess you could call me a risk taker.
ReplyDeleteIt's certainly true that I researched my Addisons when I was diagnosed, but I think to a certain extent I've been lucky that it's been so easy to manage. Mind you, my doctor set my expectations by telling me I would live a totally normal life.
Now if only I could get my head sorted out ....
This is exactly how I feel and what I have done with all my doctors for years. Some of them take offence and I have had to change Dr.s sometimes. I just feel
ReplyDeletelike we pay them good money for what they do and if they can't research something when we ask then we need to move on to another dr. I wish they would put themselves in our shoes. If it was them they would change their mind.
I would like to know where I could go to find a team of Dr's to sort out everything. They need to work together. It is often ridiculous that they don't even read the lab work results before I come back in. That is usually months. Get real. Then they don't tell me the truth. I have to get the real results faxed to me to see them.
My 3 brothers and late father are all dentists. I am a dental hygienist. To make myself clear, one time one of my brothers had a toothache. Ha! He said after he had one and experienced it for himself that he would never not take a drop-in walk-in appointment (unless his receptionist didn't tell him) that happens, He experienced the pain and realized it was the most awful pain! He always takes people even if he has to stay late. No matter what. That is what Dr.'s are suppossed to do.
I will never forget that.
I love your website and I am glad I found it. I have got a long way to go on getting myself straightened out. Thanks Dusty!
Toothcleaner1
Pip, thanks for commenting! you are certainly one of the people I think of as a risk taker and one who lives a balanced life despite obstacles. Your head will get better soon!
ReplyDeleteBTW, your garden is beautiful! Well done!
:) Dusty
TC,
ReplyDeleteThanks for inspiring me to write this! You're well on your way to feeling better.
It's a sad revelation when we realize that we can't trust our doctors to read our results accurately and stay on top of the latest research for the blood work that they ordered. It's sad but it's good to know that we have to be our own advocate and we can keep up on the medical stuff that will help us specifically.
Keep up the questions and great attitude!
:) Dusty
I am absolutely a risk taker. But I don't think you have to be one to be well with a chronic illness. You simply have to be persistent. Always easier said than done
ReplyDeleteashley
Ashley,
ReplyDeleteDon't you think it's taking a risk to decide when to take your meds and how much when a doctor might tell you, "Take 10 mg HC in the morning and 10 mg HC before you go to bed."
We research and know better and decide on our own to "disobey", to take 10 mg upon waking 5 mg at midday and 5 mg at mid afternoon.
I think it's taking a risk to tell a doctor you need certain tests and why. Many doctors have adverse reactions to a patient asking for something they might not know or understand or have forgotten to think about.
Maybe I'm considering a person a risk taker in the medical arena if we're not a push over, fully accepting of all diagnoses and treatments! Wow, now that I think about it that way, it's pretty pathetic for me to be like, "Wooo hooo, just because I'm not rolling over and completely compliant, I'm a crazy Risk Taker!!!!!!!!"
Thanks for all of your contributions Ashley and thanks for making me think through the rest of my thoughts on this topic!
:) Dusty
Dusty,
ReplyDeleteYou're right - it all depends on how you define "risk taker" or "non-compliant."
But I do think this: you have to advocate for yourself, you have to make your own decisions, and you cannot simply take a doctor at his/her word - you have to do the research yourself. In the end it is your body and your life and no one cares about it as much as you do.
So...sometimes all of that work is a pain...but it's worth it. Plus, I think it's freeing to know that I'm in the one in charge of my life and my body - not any doctor. :)
At the same time, finding a doctor that you can trust and work with is really important. "Trust," though, doesn't have to mean blind trust...
I consider myself an ongoing experiment, always seeking out the right combination of medications, supplements, life style and doctors.
ReplyDeleteSo certainly there is risk in trying something new in any of these areas. It's almost a requirement. I do often find doctors give inadequate responses to questions and they do not keep up on the latest research or even do their own research on the internet. As an engineer I have to stay current and use the internet.
Joel
Thanks so much Ashley and Joel!!
ReplyDelete:) Dusty
I just wanted to pop in to say thank you to my dietsextreme.com buddies and to this
ReplyDeletesite for helping me to lose the weight and KEEP IT OFF! There really is a lot to be
said about having someone beside you as you walk the weight loss journey! Though
you may have very little to lose or you may have many pounds to lose, each weight
loss battle is personal and it comes with numerous obstacles and challenges to
overcome.
see full article here
Nothing ventured, nothing gained!
ReplyDeleteAll of us live in uncharted territory...our bodies, our own unique situation. How our body interacts with medication, and the environment.
Every day is a new day, and Addison's takes such ongoing management of medications. Often you have to decide to take some extra medicine or not! And really, the doctor probably knows no better than YOU.
You have to make decisions about your meds. You have to decide if your symptoms are beyond addison's (thyroid, DHEA), and if you bring that up to your doctor.
If we all waited for the doctor to tell us what to do day to day, I do not think we'd feel as well. But then you have to navigate trying to get your doctor to understand how you are feeling, so you can get the right medications.
So (in an ideal world), the relationship is reverse, and the doctor is learning from the patient and "practicing" medicine. But still guiding, hopefully well! But it definitely takes guts to tell the doctor, "actually, I think I need to take my medicine like this" or, "I think I might need this other medicine"
Shannon
I don't know that I would classify myself as a risk taker. However, I would consider myself both inquisitive and skeptical. I question everything, and take blind faith in nothing. I will research any topic of interest obsessively until I reach a saturation point. If I decide to apply my medication differently than prescribed, it is only after I have read much from folks like you, and read as many links the Dusty's of the world give me.
ReplyDeleteI'm just glad I can access this via the internet. That said, I am skeptical of some of the advice I have seen. Especially sources that aren't this one. I think Dusty is very objective with her opinions and doesn't come off like some self described guru.
I am now on my fourth endo, who I have been seeing since July. I stuck with my Johns-Hopkins doc for a year, but the distance factor proved to be an issue when he refused to receive my input over the phone. He was basically starving me of HC because he convinced himself that I was marginally ill.
At any rate, I am still trying to read my own bio feedback and make adjustments. I am accepting that it may be years into my treatment before I can do that effectively.
Back to the subject. I don't know that I agree entirely that it is about taking risks. It's about being proactive, and being a self advocate. I think risk takers, thrill seekers, tend to be proactive by nature. At least that's how I justify myself, I suppose.