Saturday, May 7, 2011

#71 - Which Dr is for Me?

Choosing your doctor is a very personal decision, yet also a business decision. Sometimes, you might find a doctor with the label of "Endocrinologist" but he has nothing more than textbook brush-up knowledge about Addison's disease.

So often, you will find Endocrinologists involved in a practice mostly involving diabetes. For those who have Addison's, this is not sufficient. You need a doctor who takes an interest in your disease so that they are able to provide the best in foundation care and who will try to understand the health hurdles of a person with this disease. If you get a doctor who seems disinterested, overwhelmed, or full of misinformation...then it is time to move forward and out of that office.

You only have one life, don't take chances.

Additionally, you'll need an informed treating doctor to have on hand when times get rough. If you have a physician who is mediocre, then you just might be out of luck when you most need it. The right doctor is the one who truly understands the life-threatening seriousness that an Addison's patient confronts when there is a stressor.

Many of us need to change our way of thinking toward doctors. Too many of us automatically put every doctor in an elevated position, we see them on a pedestal that might be undeserved. I say, kick the pedestal away and put that doctor on even ground with you. They are in front of you because you have hired them to do a job...just like the rest of us are expected to do our jobs in order to be paid, so are they. Even if you are not working, even if you are on disability, you have a choice...remind them that you still have freedom to take your business elsewhere.

At this point in my life, I see a doctor as a body-mechanic. Just as machinery-mechanics can be good or bad, the same goes for those in the body-health business. Some doctors really are clueless, they might have white-coat ego and are not really interested in doing the dirty business of doctoring. Some are thoughtless and others are simply incapable of doing their job. To be fair, there are also incredible doctors who admit to being failable, yet they have a natural passion for life-long learning and a real concern to provide the best care they can possible give to their patients.

Finding a good doctor is not as easy as simply making an appointment and showing up with blind trust that you will be in good hands. Would you pick a babysitter out of a hundred names in the phone book and go drop your kids off in their care? How many things could go wrong with a person who carries the label of "babysitter?" What about that classic car that needs a fresh paint job? Would you randomly select a auto-body-detail shop and gladly drop off the car with the keys, then hope for the best? Why would our health...our very LIFE be any less important than how we approach other areas in our life? What things must you expect before you "hire out" for any ordinary job?

Now, put having a rare disease into this equation and you will find the availability of a "good" doctor to be greatly reduced. This is where your own pro-activity is critical to your own health. Of course, if you are seriously ill, you are not as able to do your homework as if you were well-abled with the strength to sit behind a computer and do extra research. Recruiting a "friend" is sometimes easier said than done. A hard fact is that we may have times when our illness forces us to go with the flow and hope for the best. However, as soon as you are your part to challenge, to inform and to increase the quality of every moment spent with that body-mechanic wearing a white coat.

Just because a person goes to medical school, does not mean they are automatically meant to be a doctor in your area of disease. If you have truly received below sub-standard care, even low level care that you know could've put your life in jeopardy, then you need to speak up and demand a refund for services NOT rendered, you should verbally make your disappointment known (respectfully) and be sure to follow it up with the same in writing with a note that the letter is to be permanently placed in your medical file as part of the official record.

Again, you're not looking for a miracle worker, but you do need a physician who comprehends the basics of Addison's...the need for an immediate prescription for an emergency injection, the need for prescriptions for your daily medications with the understanding that a tad more per month should be added to your daily prescription for stress-dosing so it is automatically available, and the understanding that regular blood work should be ordered. Foundation issues should be covered without grief. It is part of treating a patient with Addison's disease.

Personally, I've found my local internal medicine doctor to be my best source of care, far beyond my endocrinologist. I have seen about a dozen endocrinologists and most have sadly lacked skills to treat an Addison's patient. But, I know good ones are out there! I have had several tell me that I did not need to worry about keeping an injection on me at all times because I live so close to many different hospitals. Hmmm. What about when I travel? What about when I go to my acreage? I actually told my endocrinologist (at the time) about needing an injection to take to our land and he told me that I should not be going to any place that is isolated. Well, that's not a good answer. What about needing an injection BEFORE paramedics are able to arrive or before I can make it to a hospital which will require me to be registered, to be assessed and before my "rather healthy looking self" must convince the E.R, Doctor on hand to get moving quickly so I can be treated for an Addisonian Crisis? What about the hundred other scenarios when you might need an emergency injection?

Your treating doctor should be pressing you to keep an injection on you at all times and to wear a Medic-Alert item. If you go to the National Adrenal Diseases Foundation,, you will find the best information about emergency protocol that could help save your life or the life of someone you love who has Adrenal Insufficiency. Sometimes, you might have to provide your eager physician with more information. If you have a doctor who is willing to learn more and is pro-active in your care, then it would be beneficial to bring in print-outs for the doctor to read or to put into your file.

One of my endocrinologists was at a loss when I asked him to provide me with any information he could about Addison's, he told me to go home and look it up on the Internet because that was my best bet for learning about this disease. He had nothing. At least he was honest, I can respect honesty.

Regardless, if your doctor is providing you with substandard care and he is not open to making a change, then you really don't want him in your corner when you are forced into an Addisonian Crisis. If he is useless on a regular appointment day in the office, then don't count on him to step to the plate in your time of need.

Your doctor doesn't have to be a miracle worker. But, he should at least strive to go the extra mile to provide the best treatment possible and this means having an ongoing, updated understanding of those patients or his only PATIENT with Adrenal Insufficiency / Addison's disease. Conversely, your doctor's clear lack of interest should equal you saying those necessary words to protect your own health, "You're fired."

1 comment:

  1. It's normal for us to think that we go to a doctor- get advice- and trust that they've been thorough and are trustworthy. But since we've got a life threatening condition it's so much more apparent when they aren't those things! I think most people will trust that a doctor is good and correct in all their advice, but I'm skeptical of most doctors now. After seeing 3 doctors who ignored my complaints and symptoms of Addison's, I really hesitate to take a doctor at their word alone. It's great that I have taken responsibility for my health, but in some ways I miss the ignorant trust I used to have in the medical field. I think I push my mistrust on others too- when friends or family members tell me something a doctor has said I always tell them to do some research about it and get copies of their labs...


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