Not sharing your medical news

I had dinner with an old friend last night, as well has her husband, and some of my family. I hadn't seen her in a few years just because both of our lives have taken us in different directions.

In talking, she shared that she had gone through a second breast cancer diagnosis last summer. And she had decided not to tell everyone about it. She told some people but not many more about her diagnosis, decision process, surgery and treatment. Why? Because she didn't want to and she decided there really wasn't a need for it. So she didn't.

I completely agreed with her decision and fully support it. Why? Because its what she was comfortable with. With any medical diagnosis, it is completely the patient's choice on how to handle it. (I mean unless there is an issue of lack of mental capacity.)

Seriously, the absolute worst thing that can happen to a patient if other people decide to share their diagnosis publicly. Imagine that you get a diagnosis and it ends up as the front page of your local newspaper? (This must happen to celebrities with the National Enquirer, and similar publications, all the time.) Or, you go to a theater and have the emcee start with a spotlight on you and the announcement, 'let's welcome Caroline and her newest cancer diagnosis'. That would really suck.

This is where HIPAA laws are important. It doesn't matter if you are the patient's friend or family member, its not your news to share so shut up! HIPAA laws should also apply to friends and family.

Life with chronic conditions

I may whine complain about a lot of the crap I deal with in my life. I also may be a tad cranky about getting my meds so I don't hurt all the time.

I have a therapist for talking about stuff and I have a meds therapist who keeps me on an even keel. So any issues with depression are held back. I have people to talk things out with. And I know my ailments are not in my head.

I get exercise to help maintain my body as much as I can before my ailments compromise it further. Its not age that is doing this to me.

But so many people just don't get it.

I have a friend with a chronically bad back who has a fair amount of pain. But she doesn't see a doctor about it. She does occasionally see a physical therapist. She has no prescriptions for pain meds because she gets her sister's prescription. She doesn't exercise regularly. And she doesn't understand how I live in pain and have to beg off on group events or leave early. Since she's there and in pain she doesn't understand why I can't stick around.

I also have friends who want to go out at night to do things. Since not much is allowed to get between me and my 930 pm self imposed curfew, I don't go out much. If I do, it needs to have a comfy chair that provides good support. And it can't include any amount of walking or standing.

Finally I have an expiration period. If I am out too long, I spend a long time recovering. So if a friend is late and I spend time waiting around for them, especially if I am standing, I don't get to fully enjoy my time out and end up leaving early to go home and rest before I need to spend a couple days recovering. Therefore I don't spend time with friends who are late.

My husband does understand me. He claims that if I do things I shouldn't or for too long, I am crabby for a day or two. Apparently he doesn't like me when I am crabby. Maybe I should rip off that fake smile and let my inner crabbiness show and then more people might get it.

Another 'Breakthrough'

There is another cancer breakthrough that could lead to 'new treatments'. That would be nice to see. This one claims to have found a cancer mutation weakness that could be identified. And if it could be identified then it could be isolated and targeted. Then it could be stopped or 'cut off' and cancer could potentially be stopped. 

It sounds great on paper. And it might work out in the future. After a few years of research followed by five to seven years of testing. So in a decade this might make a difference to patients.

I am getting tired of this. New medical research is always taking place. But it takes so long to actually make a difference to patients. 

This is actually stressful to the patients who are waiting for treatment and a new medication to save them.

Here's the problem. The media now announces every new medical breakthrough as it is discovered which may or may not actually lead to a new treatment option in a decade or so. With the internet and newer technology the news is spread far and wide. This reaches all the patients and the families who are waiting for the treatments. 

Then as the drug development process starts, patients follow this information. And as drugs go through clinical trials, patients start lobbying the FDA to release drugs early and rush them through clinical trials. Which is not a great idea. 

Think about all those drugs that are recalled by the FDA after additional research finds out that they are harmful. 

But I digress. I hope this 'breakthrough' will lead to new treatments, but I am not holding my breath.

Changing the Affordable Care Act

One of the big claims by all the candidates for president is to reform healthcare. I can understand the desire to change a healthcare plan which is hated by some and loved by others simply because it was the first pass at a national health plan. Obviously it needs some tweaks. Some want to add to it, some want to change it, and some want to replace it. I hope none would remove it.

While I understand the need or desire for change, I really hope that health insurance is not taken away from anyone who already received it under the current plan.If the ACA allowed someone to finally get health insurance, could they really take it away?

Many of us sick unhealthy people previously faced the barrier of not being able to get or keep health insurance after a not so good diagnosis. I hope those days do not return. Seriously could some of the people who most need health insurance have it taken away?

This is a real concern for me. I realize that one of the biggest complaints of the ACA is the mandate that all citizens have health insurance or face a penalty. I can accept that. Some people just don't want a requirement like this in their life, whether it is desire not to have the government intruding in their life or that they do not feel the need for health insurance.. That is their right.

But the people who want health insurance and couldn't afford it, were rejected by their insurance company, or any other reason, should still be able to have health insurance.

Health insurance should not be taken away from anyone who has it and wants to keep it. Also any one who still does not have health insurance and wants it should still have it accessible. I hope the politicians are listening to us unhealthy people.

When all else fails, take a nap

Yesterday, after my therapist appointment, gym, and grocery store, I was so tired I couldn't watch TV. I was probably borderline exhausted. So I was smart. I took a nap.

Actually I didn't just take a nap, a nice little snooze, with my feet up. I slept like a log for over two hours. Then I went back to bed after dinner and slept again for eight hours. So maybe I was tired.

Actually I was so tired, I couldn't focus on much. If you can't watch a Lifetime Movie because you can't focus, you must be tired. In the past my criteria was if you are too sick to focus on the weather channel, you must be really sick. (I learned that lesson while stuck in a hotel with the stomach flu on a business trip.)

It is hard to focus and function like a human being if you are not fed and rested. Those are basic facts. I don't have problems with the food side of the equation (my inner size 8 is protesting) but I clearly have problems keeping up with my rest.

I have to work on my napping skills. The biggest problem that napping causes is not getting enough sleep at night. Your body needs along period sleep to get to that REM stage of restful sleeping. Its bad enough when I wake up in the middle of the night and am not rested the next day. But if I nap too much then I will have problems getting sleep at night.

Today I am tired again but not as bad. I may or may not nap again. It depends how my day goes. But I will make a point not to over exert myself.

My Body Isn't Letting Me Do What I Want

I have big aspirations for our new house. And I'm cheap. I hate, hate, hate, hate the paint colors in our new house.

Brown paint in the master bedroom makes a smaller room look tiny. And there are chips in the walls where the previous owners pulled hooks out. I can't stand it. The same purply brown paint was used in the hall bathroom. Making it look like another cave.

The kitchen is this ugly taupe/tan which continues into the dining room and living room and the upstairs hall and the third bedroom. The second bedroom and the master bathroom are pale green - also known as cucumber by Benjamin Moore. Initially I hated it but its growing on me.

Then the downstairs, where do I begin? The majority of the main area is painted a dark, dark, dark blue. If you rub your fingers or anything else on the paint it leaves a mark. Evidently the previous owners wanted a gaming/theater area to be really dark. They even replaced the drop ceiling tiles with black acoustical tile. And they used blue painters tape to hide the white runners between the drop ceiling tiles. The rest of the room is decent a lighter tan which is nice with the white trim.

My aspirations include repainting the entire inside of the house. I have no thoughts that I can do it in a reasonable period of time. I had thought I could paint a room each week. There is no wallpaper here that needs to be removed. The walls are in pretty good shape. I need to spackle, tape, and wash the walls first.

I started by getting a nice pale peach for the hall bathroom that will also be used in the kitchen. That was Monday. I painted Monday. I did more on Tuesday but I was so exhausted from Monday. But I still need to go back in there. First I need to get a better paint brush. and see my therapist and go grocery shopping. I might not be able to paint today. I think I can paint tomorrow.

I mean I will have time to paint tomorrow. But I don't know if I will be up for more painting tomorrow. And I need to clean up the mess I made in the bathroom and put everything back to the way it was. So I should be able to finish this week. I hope.

Then I need to rest up before I try painting the master bedroom next week. I think that will be one wall at a time instead of the whole room. And a lovely pale blue.

Seriously I didn't think I would be this exhausted from painting. I take breaks all day long. I didn't even expect to finish in one day. But damn I'm tired.

I am not working now. I am, by nature, cheap. I really do not want to pay someone to paint the house. I expect I can do that. My husband works full time and I do not expect him to spend all his time fixing up the house. I want to pull my share too. I expect myself to contribute equally to the household. But my body is letting me down here.

Doctors Paid to Tweet

Twice last year (March and June) I blogged about doctors who provide medical advice in a tweet. Now I found out that doctors are being paid by pharma companies to tweet about specific medications. And doctors who use social media do not disclose that they have been paid to do so.

So now I am even more on the side of medical advice for me will not come for a tweet. Their impact on my life will be the same as an ad for a pharma product - I ignore them and wait until my doctor tells me about it.