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.

Lessons from famous cancer people

Just because someone is rich and famous and survives cancer, it doesn't mean they can invent a new way to cure cancer. There are a few I would like to mention here. I have nothing against these women at all but am concerned about the weight their name carries and how many followers they have simply because of their fame.

Suzanne Somers - she has a book out on chemo free treatment of cancer based on interviews with doctors. I'm sorry but there is no way to globally dismiss or prescribe any type of cancer treatment without a one-on-one conversation.

Farrah Fawcett declined conventional, FDA approved cancer treatment which would have required major surgery and resulted in needing a colostomy bag for life and went to Germany for a different treatment. Which unfortunately was painful and did not work in the long run. This reminds me of the families who went to Mexico for Laetril treatments in the 1970s. If its not approved here, there may be a good reason for it. And running overseas may not be a good idea.

In a recent article in AARP, long time friends, Melissa Ethridge and Sheryl Crowe talk about their cancer treatment successes. While I found the article interesting, I was not too thrilled with the last image:

Melissa 'turned off' her BRCA gene by eating better. And Sheryl meditates so that her cells function at a higher level.  I'm sorry but you can't turn a gene off. Its part of you. And maybe meditation helps you but it doesn't mean it can cure cancer. Being healthy can help you reduce your risk of cancer but don't think daily meditation will keep you healthy.

I can go on. These four women are ones who first came to mind. If you are rich and famous you have access to the best care and the best types of supplemental treatments from personalized workouts, professional chefs, and expensive organic food and personal doctors. But that doesn't mean your treatment is going to work for anyone else. And please be clear on that to your fans and followers.

Cancer causes

Let's see how I do on this one.  The American Association for Cancer Research just announced the preventable causes of cancer in the US.

1. Tobacco - I quit that a few years back
2. Cancer made me fat. I wasn't fat until breast cancer treatment.
3. I have no idea about cancer causing pathogens.
4. I go to the gym 3x each week and get 1 hour of cardio each time followed by 30 minutes of weights, machines, and stretching.
5. Fruits and vegetables every day. A minimum of two pieces of fruit by noon followed by salad and/or green vegetables with dinner. 
6. I have never been to a tanning salon but do go to the beach. I don't remember the last time I got a sunburn.

So let's go back to the 'why me?' question.... No let's not. Anyhow more discussion on this can be found here. I'm doing the best I can.

Germs, germs, germs, and more germs

Germs are everywhere. We need the good germs to build our immune systems. I am not a germaphobe..... You will not find me using hand sanitizer unless there are absolutely no other choices. I do practice the basics. I wash my hands regularly and especially when cooking, before and after the gym, after using the bathroom and all that. But 100% germ killers aren't good. They kill the good and bad germs.

 With my immune system I am told that I should avoid sick people and blah-blah-blah. I ignore that part and live my life. I refuse to live under a rock. I go out in public. I don't hang out with people with a cold.

But there are a few germs which concern me. The flu so I get a flu shot. Maybe I'll get a pneumonia shot as well. I also have gotten the booster for whooping cough and the others. I am concerned that if Ebola got here, we would have problems. That disease that is affecting children all over the Midwest is not a good thing.

We need to have ways to get rid of the bad germs but keep the good germs in life.

Living a better life

I have decided I need to take steps to improve my life (well our lives because this includes my husband). This has taken some thought to get here but I have come up with these:

1. We need to eat better. I talk about it. I try to but not there yet. I can tell this because of my bulging waistline. My husband has a similar problem. More vegetables and grains. Less fats, etc. You know all of that but there is always room for improvement.
2. We need to do more things together. Last weekend we on a day trip adventure to an ocean front state park in New Hampshire, just over an hour away. We walked on shady trails, sat on the rocks and watched the ocean roll in and admired the view of the offshore islands and closer lighthouses. Then we went for a late lunch, a little shopping and home. I have already planned our next trip in a few weeks. We need time at home this weekend to get some things done. Besides it would be less fun if we went on a day trip every weekend.
3. I need to take better care of my appearance. I get regular hair cuts and get my nails done. But I dress like a slob I have decided. A casual top and dockers does not a fancy outfit make. I used to work in Boston in an office where wearing a suit was considered suitable. I stopped working in the city 7 1/2 years ago by choice and have gotten very casual. I actually went clothes shopping and bought some tops that push my boundaries of being a little dressier and even bought a dress(!). Today is the first day of new attire at work. We'll see how it goes. My husband does dress nicely every day in a button down shirt and sometimes even a tie so he is not a problem here.

That's it for now but I think its plenty.One step at a time. I have found being sick allows me to get more casual. Who spends time on their appearance when you feel like crap? Also, business offices where I have worked have gotten more and more casual over the years. Where I work now, jeans do appear on co-workers.

This is part of living a better life. I need to do other things but I'll get to them. Getting together more often with friends. Going out more socially than I have been doing. Step by step we can live a better life.

Over-Awareness, Focus, Hype and Expectations

The media did a damn good job about making sure we all knew about Angelina Jolie's double mastectomy. She went public, if I recall correctly, to raise awareness about the BRCA gene. I respect this decision and congratulate her on a brave decision to take something very personal and make it public.

In a recent survey, three quarters of us did know about her surgery and decision. Considering that it happened less than a year ago and and was much less significant than a war, earthquake, typhoon, etc 75% is a pretty good number.

I would also like to point out that all those years of breast cancer awareness and pinkification have allowed this to become a major news topic and not get buried under the carpet or something. However the information stops at awareness.

Only 10% of those asked in the survey knew about Angelina's BRCA diagnosis and why she had the mastectomy. I think I am okay with this. If you are not embedded in the breast cancer world you can't be expected to know chapter and verse about the genetic causes of breast cancer.

For example, I know there is some family genetic trait that leads to Huntington's disease and don't really feel I need to know more about it because it does not affect me directly. If it did, I would be up on it and have read all the research.

I think we have reached a level of breast cancer awareness that is overdone. But I do not think we need to expect that all American's know the great details of a breast cancer diagnosis and all its risk factors. There are many other diseases and ailments that deserve more awareness and shouldn't be hidden behind a pink curtain of over-hype and over-awareness.

I do think Americans need to embrace overall awareness of a healthy lifestyle and not focus on a few diseases at a time - the ones that are closest to them and causing them the most problems.