Another case of the warm fuzzies

Now that we are past the age where the three martini lunch was an acceptable daily interlude, it is not acceptable for anyone to be under the influence of anything (other than a post-four hour meeting daze) in the work place.

Back in the late 70's and early 80's I worked in a restaurant that was a destination lunch place for a bunch of office park employees. We had cab company phone numbers next to the phone for those who could not safely drive themselves back to the office. Over the five years I was there, often working as a cashier, I watched the lunch checks go from three martinis to one glass of wine or a single Bloody Mary or other vodka based drinks. Times changed even then.

Later in the 1990's I worked for a British company and went to the UK regularly for week long trips. I was usually taken out to lunch at a local pub where I was expected to have a beer, or at least a half pint Shandy (lemon/lime soda with beer) with my meal. I usually declined because it would cause my jet lagged body to demand a post meal nap instead of working for the afternoon. In the US, I think its very rare that alcoholic beverages are consumed at lunch during the business day any more. I don't think any work place is immune to impaired employees but some of them have more long lasting implications than others.

When we go to the doctor we make a few basic assumptions, that they are trained and know what they are doing, they won't hesitate to consult their peers when they are unsure, and they are sober. While the majority of doctors would report their impaired colleagues, 17 percent actually have dealt with one. Um, do the math, that's one in six. I'm not picking on doctors and actually believe that they are probably one of the more conscientious industries. They are probably less likely to go out for fancy lunches to celebrate a business deal, or even have time to do more than grab a quick bite during the day. But when its my body and health that's being treated here, I would like the basics.

What astounded me about this article is that the numbers are so high. What it doesn't state is if the 17 percent reflects over their career they have dealt with impaired employees or over the past five years. We need a little more information here before becoming concerned. But I am already concerned. Should I start sniffing their breath?

Getting even or driving your doctor crazy

We all try to be a good patient. We try to eat better foods, less red meat more chicken and fish, get 8 hours of sleep, drink less, brush our teeth, floss, yadayadayada...

Huffington Post conveniently posted a list of 9 things that drive your doctor crazy:

1. Dr Google - we all know Dr Google is an idiot.
2. Refusal to vaccinate - which has caused more problems later on
3. Demanding antibiotics - they don't fix everything
4. Claiming you are eating less and working out more but still not losing weight - obviously you aren't
5. Asking for a quick fix - there is no magic pill (I know this because I ask regularly)
6. I only eat low fat - low fat is good but some fat isn't bad
7. I don't have time to come in - really? You have time to go to the gym, work, out to dinner, etc.
8. I can keep smoking as long as I exercise - They don't get it
9. I don't eat carbs - don't demonize a whole group of food. Whole grains are carbs but are good ones.

Now that I have this in mind, I can get ready for my rheumatologist appointment this morning. I haven't asked Dr Google much about RA recently so I am probably good. The rest probably won't come up. Except for the magic pill issue... I just ask to make sure nothing has slipped by me.

But I have 1:58 left to come up with my list of questions for her.

Why do I bother to ask these questions anyway?

This week I saw my oncologist for my annual check up. I am happy to only see her once a year... Except when I nominated her for an award last winter or when I ran into her in the hallway at the hospital. So, I, who am never afraid of the direct question, asked her "so what are my chances of more cancer?". Why not ask? I would prefer to know what can be known. This little question of what could be coming in the future has been irking me for years.

The answers I got were:

• Even with my medical history of two cancer diagnosis and family diagnosis of a parent with cancer, there is no way of knowing if I am likely to get another cancer. If there was some genetic predisposition that would be different but there is no way of knowing. People who get cancer once, are more  likely to get another cancer. People who get cancer twice, are more likely to get a third cancer. Et cetera. Not very helpful.
• The chances of having a thyroid cancer recurrence are still out there but not known. It has been known to recur decades later.
• The chances of having a breast cancer recurrence since I am still on Femara (Letrozole) are somewhere around 6%. She ran my data through a computer model and got the magic number.

We talked about it a little... And then I left. And then I realized, so what does 6% mean?

Does it mean I have a 6% chance of recurrence? Or that my chance is 6% greater than the rest of the population of getting another breast cancer? I just have to accept there is a 94% chance I will not have a recurrence.

Why do I even bother to ask these questions? Did it get me anywhere? No. I guess I am asking questions that have no answer. Damn.

You don't understand, don't worry, your doctor doesn't either

With all the new medical advice out there, they always end with two statements:

• More research is needed
• Ask your doctor if this is right for you.

Well in this case, more research was done and it turns out doctors aren't as smart (or Gods) as we might think. First of all how are doctors supposed to keep up on all the latest research. Second all the numbers come out in percentages - which are generalizations - and not round numbers.

This new article is long but very interesting (and definitely worth the read) about some new research showing how doctors do not necessarily understand the benefits of screening tests, as used as their examples. If 100 women get mammograms, how many will show something? Of the ones that do, how many will test positive for cancer? How many will be false positives? How many lives will be potentially saved?

"There are three other questions Gigerenzer advises patients to ask doctors to ensure they get all the facts:

• "What are the alternatives?"
• "What's the benefit and what's the harm?"
• "Please tell me this in terms of absolute numbers. If 100 take this medication and 100 people don't, what happens after five years?"

Once they get the answers it is up to them to make up their own mind about treatment, he says."

That should get you where you need to be to make a decision. If your doctor can't answer this or hesitates, maybe they should do some reading and get back to you or find a doctor who can answer the questions.

Practice makes perfect

And why its a medical practice. I have had eight surgeries and a billion medical (mis)adventures but I have NEVER asked this question of the person doing the procedure: how many times have you done this procedure? I have never asked that. And this is scary.

A couple of weeks ago I had a filling, a rather large filling to be precise, which is/was borderline for turning into a root canal. I hate the dentist. I hate the drilling and the needles and the potential pain. I am a weinie and have been know to take an ativan pre-procedure to get me through it.

The dentist and I had a big conversation as we waited for the Novocain to kick in. She said if it turned out I needed a root canal she would send me to an endodontist because she didn't do root canals any more. She told me that she said an endodontist would have me in and out  in and hour because that is what they did all day long and they were very good and had the right tools and microscopes and all sorts of fun things I didn't want to hear about it.

Doctors who do the same procedure day in and day out have a much lower rate of errors and mistakes. You really want the doctor who does the same surgery again and again. Go read that article if you don't believe me. But I think its time I start asking questions....

Preparation

I have to get prepared. For what you might ask? Doctor appointments. On Monday I meet with my pain management doctor. I need notes to ask him questions. If I show up with a list, he wants me to read him my questions and then he answers each one. If I do not remember my list, I sometimes feel rushed with him. He has a very efficient manner so, in his efficiency I sometimes do not get all my questions answered because I forget to ask them.

My questions for him will cover my (annoying) back pain. My lower back pain is caused by my degenerating disks. It only happens if I bend over or attempt gardening (which I love) or sweeping, shoveling or vacuuming (which are  optional activities in my life). The decision will be do we do more needle treatments or not. Probably not.

My upper back pain is caused by fibromyalgia and myofascial pain. We can do more needles and things but they can be very helpful. The problem is they make me uncomfortable for a few days and we are going away for our anniversary (and will have a house/cat sitter so burglars don't get any ideas).

On Wednesday I see my rheumatologist and I have a big list for her. What to do about numerous body parts and their aches and pains. Do we stay on the same medications or do we switch or add others? I don't like the idea of more medications but I also want less pain in my life. And sometimes the side effects (mouth sores) of my current medications make things like eating difficult. Not that I wouldn't mind eating less and losing weight but its the pain part that I dislike.

I need my list for both or my chemo brain/fibro fog/whatever will not allow me to recall a damn thing when I get there. My life is full of some many adventures isn't it?

Doctors and coping with multiple ailments

Do you consider your doctor to be the be-all and end-all of all your medical questions? "I need to ask my doctor about that...." Or "let me see what my doctor thinks..." Then you accept their words as guidelines for your life - food, exercise, modifications, etc.

Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.

If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.

But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.

Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.

So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...

The eternal life of the patient and questions with all my ailments.

Breaking in new doctors

Its an ongoing effort that can take months or years! Today I am off for my third appointment with my rheumatologist. We are still getting to know each other.

My first rheumatologist, who I met a whopping two times, left the hospital and moved to another one which was closer to her home where she was a mother to two small children. I completely understand her reasoning. She was a nice woman and seemed like a good doctor but I just never got to know her well in two visits.

Then I met with a nurse practitioner for a three month follow up who was also nice. She got me started on injected methotrexate - and I HATE needles but that's another story.

Finally I met my new rheumatologist, who was recommended to me, in July. I saw her next in October and we made some progress. She got to know me a little more but we have a long way to go.

Today I meet with her for the third time. I hope for lots of progress. I have a big list of questions for her. I hope she has lots of answers for me.

My problem with doctors is I come with lots of baggage - meaning I have a really FAT medical file. Its full of cancer, endocrine stuff, autoimmune stuff, and a few decades of over use which has left me with assorted ailments. I have multiple doctors updating it constantly and regular blood work to keep track of things.

However I expect by a third visit a doctor will be up to speed and understand me a bit better. I'll keep my high expectations to myself and see how things go.

Stepping away from Dr. Google

I did it again. I asked Dr Google about symptoms. What the hell was I thinking? I had myself mentally on the way to the Emergency Room to get some help before I died overnight. Then sanity prevailed, I shut off the computer and went to bed. I am still alive. But I have increased the list of questions for my doctor on Wednesday or whatever day it is that I see her.

Why do I ask Dr Google any questions any more? I have no idea. I should know better. I mean with my medical history, blah, blah, blah, I am always a special case I think. I am not normal. I need to accept that.

But the real question is what is normal? What is this damn new normal all cancer people are supposed to achieve anyway? I am not sure Dr Google would know anything about the fictional new normal in the first place. Maybe I need Dr. Oz instead.

Crap. I'll just go to real doctors for answers to real questions instead.

I am confused

I admit to being confused. I have rheumatoid arthritis. I am on injected methotrexate. Am I supposed to be feeling better? Because I am not. I keep forgetting to ask my rheumatologist about this.

I know I have other pain causing ailments - degenerating disks in my back cause pain in my lower back. I know all about these pains. If I bend over to pick things up, my back reminds me I should not - never mind that you are supposed to squat and lift with your knees. But that is one set of pains.

Then I have the fibromyalgia induced pains. Those are the ones which are not back pains or rheumatoid pains. They appear as things like bone deep pain in my arms or elecgtrical pains across my lower back.

And I have osteoarthritis pains. That is when my  knees crunch when I bend them. I have Snap, Crackle, and Pop and their extended family reunion living in my left knee. And my right knee and a few other assorted places.

But I know I have RA pain in places that never really feel better. This includes my hands where my knuckles always feel inflamed and swollen. My wrists, my shoulders, my ankles, and my feet. And other places that are symmetrical. RA pains are easier to pin point as they are symmetrical. I am on medication and anti-inflammatories but they are always there.

If I judge my health based on the television commercials where people are moving about freely while they are on medication for their RA. I clearly not atfor a commercial any time soon.

But my real question is am I supposed to not have pain from my RA? Or is the treatment not working or am I living in a constant flare? And combined with fibro fog and fatigue, I am a walking disaster.

I think I need to write myself some notes and bring them with me to my next rheumatologist visit in January. Crap. That's a long time from now.

Preparation

I have to get prepared. For what you might ask? Doctor appointments. On Monday I meet with my pain management doctor. I need notes to ask him questions. If I show up with a list, he wants me to read him my questions and then he answers each one. If I do not remember my list, I sometimes feel rushed with him. He has a very efficient manner so, in his efficiency I sometimes do not get all my questions answered because I forget to ask them.

My questions for him will cover my (annoying) back pain. My lower back pain is caused by my degenerating disks. It only happens if I bend over or attempt gardening (which I love) or sweeping, shoveling or vacuuming (which are  optional activities in my life). The decision will be do we do more needle treatments or not. Probably not.

My upper back pain is caused by fibromyalgia and myofascial pain. We can do more needles and things but they can be very helpful. The problem is they make me uncomfortable for a few days and we are going away for our anniversary (and will have a house/cat sitter so burglars don't get any ideas).

On Wednesday I see my rheumatologist and I have a big list for her. What to do about numerous body parts and their aches and pains. Do we stay on the same medications or do we switch or add others? I don't like the idea of more medications but I also want less pain in my life. And sometimes the side effects (mouth sores) of my current medications make things like eating difficult. Not that I wouldn't mind eating less and losing weight but its the pain part that I dislike.

I need my list for both or my chemo brain/fibro fog/whatever will not allow me to recall a damn thing when I get there. My life is full of some many adventures isn't it?

Another case of the warm fuzzies

Now that we are past the age where the three martini lunch was an acceptable daily interlude, it is not acceptable for anyone to be under the influence of anything (other than a post-four hour meeting daze) in the work place.

Back in the late 70's and early 80's I worked in a restaurant that was a destination lunch place for a bunch of office park employees. We had cab company phone numbers next to the phone for those who could not safely drive themselves back to the office. Over the five years I was there, often working as a cashier, I watched the lunch checks go from three martinis to one glass of wine or a single Bloody Mary or other vodka based drinks. Times changed even then.

Later in the 1990's I worked for a British company and went to the UK regularly for week long trips. I was usually taken out to lunch at a local pub where I was expected to have a beer, or at least a half pint Shandy (lemon/lime soda with beer) with my meal. I usually declined because it would cause my jet lagged body to demand a post meal nap instead of working for the afternoon. In the US, I think its very rare that alcoholic beverages are consumed at lunch during the business day any more. I don't think any work place is immune to impaired employees but some of them have more long lasting implications than others.

When we go to the doctor we make a few basic assumptions, that they are trained and know what they are doing, they won't hesitate to consult their peers when they are unsure, and they are sober. While the majority of doctors would report their impaired colleagues, 17 percent actually have dealt with one. Um, do the math, that's one in six. I'm not picking on doctors and actually believe that they are probably one of the more conscientious industries. They are probably less likely to go out for fancy lunches to celebrate a business deal, or even have time to do more than grab a quick bite during the day. But when its my body and health that's being treated here, I would like the basics.

What astounded me about this article is that the numbers are so high. What it doesn't state is if the 17 percent reflects over their career they have dealt with impaired employees or over the past five years. We need a little more information here before becoming concerned. But I am already concerned. Should I start sniffing their breath?

Why do I bother to ask these questions anyway?

This week I saw my oncologist for my annual check up. I am happy to only see her once a year... Except when I nominated her for an award last winter or when I ran into her in the hallway at the hospital. So, I, who am never afraid of the direct question, asked her "so what are my chances of more cancer?". Why not ask? I would prefer to know what can be known. This little question of what could be coming in the future has been irking me for years.

The answers I got were:

• Even with my medical history of two cancer diagnosis and family diagnosis of a parent with cancer, there is no way of knowing if I am likely to get another cancer. If there was some genetic predisposition that would be different but there is no way of knowing. People who get cancer once, are more  likely to get another cancer. People who get cancer twice, are more likely to get a third cancer. Et cetera. Not very helpful.
• The chances of having a thyroid cancer recurrence are still out there but not known. It has been known to recur decades later.
• The chances of having a breast cancer recurrence since I am still on Femara (Letrozole) are somewhere around 6%. She ran my data through a computer model and got the magic number.

We talked about it a little... And then I left. And then I realized, so what does 6% mean?

Does it mean I have a 6% chance of recurrence? Or that my chance is 6% greater than the rest of the population of getting another breast cancer? I just have to accept there is a 94% chance I will not have a recurrence.

Why do I even bother to ask these questions? Did it get me anywhere? No. I guess I am asking questions that have no answer. Damn.

How I spent my evening or a day in the life of the eternal patient

This is truly the life of a long term medical patient. I spent last evening watching TV with my husband and making lists of questions to ask my doctors in upcoming appointments. I have had the luxury of the past few months with out a lot of doctor appointments. Now I have a big clump of them coming up over the next six weeks or so.

I know I have my rheumatologist and then my endocrinologist and then my back pain doctor. These visits require planning and lists on my part. I need to think about what I want to ask them and decide if I want to do any more research before they see them. Finally I want to think back to the last time I saw them and decide if I have follow up questions from those.

This isn't as easy as you may think. I have a first draft of my questions so far. My next step is to look at my calendar and see when the actual appointments are. Those are the only three appointments I can remember and I am sure there are more.

My most important goal is to put the lists some place where I will not lose them.... Sounds pretty easy doesn't it? I believe at my last round of doctor appointments, I lost the damn list. I frequently lose the grocery list as well.

So in my future may be another evening making my medical lists. Damn.

Doctors and coping with multiple ailments

Do you consider your doctor to be the be-all and end-all of all your medical questions? "I need to ask my doctor about that...." Or "let me see what my doctor thinks..." Then you accept their words as guidelines for your life - food, exercise, modifications, etc.

Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.

If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.

But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.

Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.

So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...

The eternal life of the patient and questions with all my ailments.

Getting even or driving your doctor crazy

We all try to be a good patient. We try to eat better foods, less red meat more chicken and fish, get 8 hours of sleep, drink less, brush our teeth, floss, yadayadayada...

Huffington Post conveniently posted a list of 9 things that drive your doctor crazy:

1. Dr Google - we all know Dr Google is an idiot.
2. Refusal to vaccinate - which has caused more problems later on
3. Demanding antibiotics - they don't fix everything
4. Claiming you are eating less and working out more but still not losing weight - obviously you aren't
5. Asking for a quick fix - there is no magic pill (I know this because I ask regularly)
6. I only eat low fat - low fat is good but some fat isn't bad
7. I don't have time to come in - really? You have time to go to the gym, work, out to dinner, etc.
8. I can keep smoking as long as I exercise - They don't get it
9. I don't eat carbs - don't demonize a whole group of food. Whole grains are carbs but are good ones.

Now that I have this in mind, I can get ready for my rheumatologist appointment this morning. I haven't asked Dr Google much about RA recently so I am probably good. The rest probably won't come up. Except for the magic pill issue... I just ask to make sure nothing has slipped by me.

But I have 1:58 left to come up with my list of questions for her.

You don't understand, don't worry, your doctor doesn't either

With all the new medical advice out there, they always end with two statements:

• More research is needed
• Ask your doctor if this is right for you.

Well in this case, more research was done and it turns out doctors aren't as smart (or Gods) as we might think. First of all how are doctors supposed to keep up on all the latest research. Second all the numbers come out in percentages - which are generalizations - and not round numbers.

This new article is long but very interesting (and definitely worth the read) about some new research showing how doctors do not necessarily understand the benefits of screening tests, as used as their examples. If 100 women get mammograms, how many will show something? Of the ones that do, how many will test positive for cancer? How many will be false positives? How many lives will be potentially saved?

"There are three other questions Gigerenzer advises patients to ask doctors to ensure they get all the facts:

• "What are the alternatives?"
• "What's the benefit and what's the harm?"
• "Please tell me this in terms of absolute numbers. If 100 take this medication and 100 people don't, what happens after five years?"

Once they get the answers it is up to them to make up their own mind about treatment, he says."

That should get you where you need to be to make a decision. If your doctor can't answer this or hesitates, maybe they should do some reading and get back to you or find a doctor who can answer the questions.

Practice makes perfect

And why its a medical practice. I have had eight surgeries and a billion medical (mis)adventures but I have NEVER asked this question of the person doing the procedure: how many times have you done this procedure? I have never asked that. And this is scary.

A couple of weeks ago I had a filling, a rather large filling to be precise, which is/was borderline for turning into a root canal. I hate the dentist. I hate the drilling and the needles and the potential pain. I am a weinie and have been know to take an ativan pre-procedure to get me through it.

The dentist and I had a big conversation as we waited for the Novocain to kick in. She said if it turned out I needed a root canal she would send me to an endodontist because she didn't do root canals any more. She told me that she said an endodontist would have me in and out  in and hour because that is what they did all day long and they were very good and had the right tools and microscopes and all sorts of fun things I didn't want to hear about it.

Doctors who do the same procedure day in and day out have a much lower rate of errors and mistakes. You really want the doctor who does the same surgery again and again. Go read that article if you don't believe me. But I think its time I start asking questions....

Don't confuse me!

I have a looming appointment with my rheumatologist this week (which I finally put on my calendar this morning) to talk about how I am feeling. We might even change my medication, I don't know.

Then there is an article on '5 Signs Your RA Treatment Isn't Working'. (Why do we need to have articles that are 5 signs... or 10 reasons.... or 15 best...?) Now I am confused. The five signs:

1. Your Disease Activity Score Rises
2. You Don't Feel Well
3. You Develop Antibodies
4. Your Polyglutamate Levels Are High
5. Your Blood Shows Signs of Inflammation

I don't feel well and my blood shows signs of inflammation. But I have no idea what the other three mean, what they are and if I have them. Now I am confused. I thought I was fairly well educated on my RA but I guess I am not.


Now I know what my questions will be for my doctor on Thursday.