Change

I don't like change. I like my little 'ruts' that keep me doing the same thing over and over again. And I'm usually okay with it.

However, my health requires me to make changes, regularly. I look back on my life in recent years and can recall many things I used to do, for decades, but do not any more because I can't.

For example, if you have read my blog for a while, you may note that I used to go for a daily walk. Every day, rain or shine, I would go out for a walk, usually a fairly substantial walk for an hour. I really enjoyed it. Now the idea of an hour walk has me cringing inside. I can't. Its a combination of all my issues which make it impossible for me to even think about more than a 20 minute walk.

I also used to do more than go for long walks, I would climb mountains, go skiing, ice skate, bike ride, and more. I was an outdoor person. Now I am more of an indoor person. I have watched so many Lifetime movies that I know the plots of some of them by heart. (My husband believes these will rot my brain but I beg to differ on that.) After being out and about for a bit, I need to come home and sit or lie down and relax. Then I turn on the TV or read a book or knit.

As I age*, I am learning to accept change more. Well, okay, sometimes I struggle with change and sometimes I make changes intentionally. Yes I did change my PCP but I think that's enough change for a while.

Unfortunately my health may force more changes that I am not ready to make. Damn.

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*I am not that old. I am still 37. And this article which talks about mental sharpness in older people - defined as over 50 - made me feel old!

Americans united against big pharma

Sometimes I wonder if I am the only one who doesn't approve of  big pharma. And now it turns out that in general more of us disapprove of big pharma and think they are ripping off patients who rake their prescription medications. Its nice to know I am not alone in being critical.

You can read the article here. Big pharma companies have a lower favorability rating than the erect of the healthcare industry, airlines and banks. And only slightly more favorable than oil companies.

Back to work....

Today I am back to work after almost three weeks off. I had to dig around to find a pair of pants and haven't yet found my shoes. Summer vacation means shorts, sandals and sneakers, not long pants and work shoes. Our lunches are made (yes I make lunch for both of us every week day) but the nice cat is out so I have to get him back in before leaving. The evil cat is busy plotting our demise....

Yesterday I had a good PT appointment. The therapist thinks that I probably didn't damage any major ligaments and probably only the meniscus, which sometimes does not require surgery. It depends how it heals and how badly it was damaged.

Also my rheumatologist thinks I am doing pretty well - this means no blood work for two whole months and no follow up for three months. Sometimes I have blood work every two weeks and appointments every six weeks so this is much better.

Finally my therapist is an idiot. Okay maybe a little harsh but she doesn't seem to understand my family dynamics so it  was a fruitless discussion. She may become my former therapist shortly. After every appointment with her, I wonder why I am still seeing her. But I try to manage the amount of change in my life and next week I see my new PCP for the first time. So the jury is still out but its not looking that good for her. The real decision is do I still need a therapist.

But now to find the cat and my shoes so I can go to work. Maybe they missed me....

Cancer language

I recently read about more offensive language of cancer. Where do people get these ideas?

I know then President Nixon declared a war on cancer in the early 1970s. Fine, have your war on cancer but sending in armies of scientists and doctors to research it to death and kill it off. But the people with cancer? We are not at war, we just want to stay alive.

I really dislike the S-word. Why? Because its a label. I am a person; I am not a label. You can describe me by saying words like short, slightly flabby, or something else, or even smart or other nice words. You can even say slightly cranky or pushy or assertive. You can also say I am a patient and a frequent flier at my local hospital. But I am not a survivor. All I have survived is a billion or so doctor's appointments and medical misadventures. Okay, you can say I have survived driving in metropolitan Boston for the last few decades. Sometimes that's a daily demolition derby.

I didn't survive cancer. With cancer, you can achieve remission, partial remission, or have NED (No Evidence of Disease) status (which is me currently). But you are never told you are cured. If you are told you are cured your doctor must be stupid a miracle worker because there is no cure for cancer. Well okay, there are a few cancers that can be cured but definitely not all. You will spend the rest of your life being 'best buds' with your oncologist, endocrinologist, or so other specialist.

Now the CDC in its infinite wisdom as a part of our government has launched a new program called Bring Your Brave, which is a breast cancer awareness program for young women. Really? I find it almost as offensive as the boobies programs that are out there. Bring my brave what? My brave face - the one I wear when my doctor is about to give me bad news or I am heading off for another surgery? My brave suit of armor when I have to deal with a bunch of nitwits somewhere?

And why does it only focus on breast cancer? It would be much better to have a cancer awareness program for all types of cancer for younger adults. Most do not expect to be diagnosed with cancer and have their world upside down.

For any other ailment, you are a patient or a person. This patient has a complication with their cardiac surgery. Or 'this person has an ulcer', or 'congestive heart failure', or 'strep throat'. Why can't we say this patient has stage III pancreatic cancer? Why does it have to be 'this person is fighting metastatic brain cancer' or  this patient is a breast cancer survivor'?

These war words are the obscenities of the cancer world. Fix your vocabulary people! Thank you. 

I am unsure

So I have had the same doctor for pain management, Dr G, for a good six years now because of my back pain and later fibromyalgia. We have had a good relationship and he has helped control my pain. I have always liked him and thought he was doing right by me.

I have a friend, L, who has been also going to him for pain management for her issues, which have included curvature issues with her spine. We have compared notes and treatments in the past and both like him.

I had lunch with L this week for the first time after some extensive back surgery last spring. She told me she will never see Dr. G again. He continued to treat her pain, never referred her to a surgeon or anyone else, or sent her for more scans. As a result, her back surgery was much more extensive than if she had had the surgery five years ago. She is very mad at him.

L got a new primary care last year who referred her to a surgeon for her back pain who told her she should have had surgery years ago. But Dr G is an anesthesiologist so he didn't ever refer her to a surgeon.

Now I do not know what to think. Dr G has always told me there is now surgical cure for my pain and I have believed him. I have also done some research on my own on potential back surgery and found that back surgery is very iffy in most cases so I have continued to agree with him. I know every patient is different but this makes me unsure about the whole situation.

I find this very disappointing and disheartening in that we assume a doctor has our best interests at heart but L clearly had a different experience. Dr G believes in medicine to treat pain as that is what he does as an anesthesiologist. A surgeon always believes that surgery is best because that is what they do. Patients get stuck in the middle. And we want to believe that what our doctors tell us is in our best interest.

I think I need to shift my focus from believing Dr G is always correct to doing some double checking. And I have a plan. I see Dr G this coming Friday as a follow up. But then I see my new primary care in a couple more weeks and I will talk to her about my pain issues, particularly my back. I do not want unnecessary surgery but I do want to do whatever I can to feel better.

We must trust our doctors but sometimes we need to do a little double checking. I don't like that part.