From avoidance to cranky

I am in such a cranky mood. Let this be a warning to those who cross my path today. Yesterday I started in avoidance mood and ended up crabby. That when to grumpy. This morning I am cranky.

So how did this happen. I was in avoidance mode because of my doctor appointment which went fine) as fine can be with an hour of unexplained wait due to rude nursing staff who preferred talking about their boy friends, cell phones, caller ID, and the weather forecast).  I ended up with blood tests in six months and blood tests, ultrasound, and follow up in one year. That's just fine.

Then I had to go to a meeting which started early to accommodate someone's understandable scheduling request but was full of unorganized and critical people who were happy to nitpick and and express opinions but not volunteering for much work at all. I heard a couple of times 'are we done yet'? I may need to  remove myself from the committee. Not over the nitpicking - we want to do things right but because of the lack of help they are providing. But I was already crabby so who am I to complain?

Next we have a tiny snow storm forecast for tomorrow and well into Saturday which will spoil all my Saturday socializing plans that I was looking forward to. Yesterday morning we were in the 3=6" range, by lunch time the double digit predictions were appearing and growing. And I can't really shovel snow or go out in play in it much - I might break out the snow shoes (unless my husband hid them on me) if we really get the predicted two feet of snow.

This morning I have to go to work after a meeting last night - which means I didn't get enough rest. And it doesn't help that after work I have to go to another work related networking event. I can come home after work and rest for a bit but it still means going out another night in a row - can you say extra crabby?


On top of all this, we are having windows replaced in the house. The plan was to be done by the end of the day tomorrow. They had a slow start but have been making great progress. Our current agreement is that we will talk this afternoon and see if they can finish before the storm (doubtful) and when they can return and finish which means rescheduling the carpet cleaning and the cleaning lady and the room  painting. Our house is in chaos as three of the six rooms have been construction zones for ten days already.
Finally tomorrow, unless it is blizzarding by 8am, I will go to the gym and then go whine at my therapist and be home by noon, ready to be snow bound for 24 hours. Maybe I can take naps and get caught up on my sleep and required rest. But I have work to do after last night's meeting.

Avoidance mode

Today I am in avoidance mode. I have one of 'those' appointments today. I don't feel like talking about it, I'm a tiny bit stressed so I am going to the gym. Depending on the result, I may talk more about it later.

I'm also avoiding thinking about the stupid snowstorm on Friday might ruin my social life on Saturday. Grr.

They really don't know

A few weeks ago I blogged that its really just A Bunch of Numbers on how doctors just give us numbers and that's all they are when we hear statistics about survival, prognosis, age or whatever from our doctors.

Now a doctor says the same thing in this article, A Doctor's Struggle with Numbers.

"Oncologists are notoriously bad at predicting survival, and none of us wants to be known as “the doctor who told me I would be dead by now,” the doctor who made a prediction of imminent demise, sending a family into a terrifying tailspin of goodbyes, only to be proven wrong and subsequently mocked for years to come. One of my patients, upon being told by another doctor that she had two months to live, held Christmas in April so she could spend one last holiday with her grandchildren. She survived to see two more Christmases.

At the same time, we need to be truthful and give guidance to people who want time to prepare, time to write wills and pay off debts, to say goodbyes and to leave instructions, to tie up the loose ends of a life now heavy with meaning.

We try to provide hope, but not false hope.

So we give ranges, starting with the best estimate of survival, because my patients have told me they shut down after they hear the worst estimate. We talk about setting goals, about maximizing quality of life, because we don’t have much leverage with quantity of life. We emphasize spending as much time as possible with family and friends, and as little time as possible with people wearing white coats. We tell them we’re not going to give up if they don’t give up.

But the truth is, we don’t know."

I always appreciate honesty from my doctors. If one of my doctors said to me, instead of giving me a range, something like 'statistics say you have a 10-20% chance of [fill in the blank], but my feeling is that you are on the high end of this due to your medical history'. I would be very appreciative of this little 'translation' or personal input from the doctor.

I can understand the doctor's point. They only have the numbers given to them but quoting statistics learned in medical school does nothing for me. Please add in a little bedside manner for me. Thanks.

Keeping up with the Jones'

If all your friends jumped off a cliff, would you? The latest fashion in breast cancer treatment is to have a mastectomy, even bilateral, at the least sign of breast cancer. The celebrities are doing it, so why shouldn't everyone else?

Because it doesn't necessarily mean the patient will have a better outcome. So why do patients opt for a much more drastic option when there is a significantly easier option?

The answer seems to be fear of recurrence. The professional reply is that 'No doubt, oncologists could do a better job calming women’s fears and educating them on the long and painful recuperation period involved with breast reconstruction following a mastectomy.'

Not so fast. I know many women who have gone through a breast cancer diagnosis who take time to think and make a rational decision that they really want two things:

1. Cancer out of their bodies
2. Not have to have such intense monitoring for the rest of their lives.

I do know some women who have not made as deep a thought process (like me) and did what the doctor advised. But many others have had a bilateral mastectomy for the peace of mind. Its not keeping up with the latest fashion.

Happy RA Awareness day, a day late

Yesterday was RA Awareness Day, the first one, so we went out to dinner with my parents because my mother wanted to celebrate. She has had RA for over 20 years. We didn't know if we were supposed to wear a special color or not.

It was also Ground Hog Day and Punxatawney Phil did not see his shadow. This lead to some discussion. Does it mean that winter is over as we know it for the year? Or does it mean it will fade away? Or do we really care because he is not accurate anyway?

RA Awareness Day did make me aware that I need to learn more about my new ailments. There is a lot I don't understand. I was attempting to reading this announcement on an important new development in the diagnosis of RA and it reinforced the thought I really do not know that much about it. Its about antibodies in carbamylated proteins (which makes me think of caramelized onions) if you really need to know.

My goal now, or another one of my goals, is to learn more about my new ailments before the next Rheumatoid Awareness Day. I have a year. There is hope.

No need for a stiff upper lip

A recent study in the UK shows that one of the reasons that the reason for the higher cancer death rates is that people are reluctant to go to their doctor with symptoms. Their reasons are that they do not want to waste their doctor's time or they were embarrassed to tell someone about their symptoms.

If you are concerned about something you need to tell your doctor and not wait. I use the two week rule myself. Most recommendations will tell you if something is not better in a week to call your doctor.

I can understand sometimes its embarrassing to tell someone  about something very personal. You can always write your doctor a note.

There is no reason to delay going to the doctor. Your body is very important and you need to treat it appropriately. What is a good reason for not going to the doctor? I can't think of one. Trust me, I am the professional patient with more ailments that you can imagine and I hate going to the doctor but I do because it makes me feel better in the end.

Medical research can do nothing

 

But marketing can make you believe it did. I am overjoyed I tell you, overjoyed to read the news:
"Drugs to treat fibromyalgia just as likely to harm as help". Yes it is true. If you think Savella, Cymbalta, or Lyrica will help my, or anyone else's, fibromyalgia you are a victim of advertising and marketing. 

"“This is a very important study,” says Fred Wolfe, M.D. of the National Data Bank for Rheumatic Diseases. “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.”"

And its not that the drugs don't necessarily work but that the side effects can cause more problems than pain they resolved. Great. Years of medical research down the toilet. (This is an example of while they had great intentions in their research they forgot the key phrase 'do no harm'. It doesn't help if a medical advance comes at a great expense to the patient. They achieved their goal but forgot about us patients. This is one example of many out there.)

Since I have been diagnosed with fibromyalgia so many people have said to me 'don't they have medications now that you could try?' The answer is yes they do. And I have tried Savella and Lyrica and I think Cymbalta already. I didn't have as many side effects but they all stopped working for me. And they interact with other medications I take so they have to be changed as well.

They should do more medical research and pay attention to the overall well being of the patient, not just resolving the pain.