How confident am I on my health?

This is a tough subject for me. I am at a point where I feel okay most of the time but am not sure I feel well enough to make significant changes. I mean should I look for a new job? At my current job, there are some pluses and some minuses. The negatives are things like commute distance (farther than I like), lowish salary - decent but I wouldn't mind more (who wouldn't?). The pluses are total flexibility in my schedule and I am an established employee.

If I left my job I would have to establish myself somewhere else and have no seniority. If my health acted up and I couldn't work for a week or so (not an unknown event), would I jeopardize it? I am hesitant to look for another job because I am not sure I am healthy enough to establish myself at a new one.

On the other hand, I see my new primary care on Monday and I do NOT expect anything new and unexciting in my health. I don't think I have any bad things going on (but not to jinx myself or anything).

Over focused?

Maybe I am a bit too focused on health issues and my health specifically. I admit to checking the health section of every news source I look at. And then I read articles about new research showing women need to be more vigilant for breast cancer or some other ailment. Really? Can't we all just go back to our annual physical and let our primary care tell us we are fine?

I am fed up with focusing on my health. I am tired of being vigilant and stressing about one ailment or another, never mind any potential new one. Maybe I need a new hobby, or to be healthy? That's it, I'll be healthy again. As if that will happen.

But maybe I need the mindset of a healthy person. What is the mindset of a healthy person?

Maybe I'll just get another hobby.

Healing

I'm pleased I felt healthy enough to travel to Washington DC at the invitation of Susan G. Komen © for a breast cancer bloggers summit this past weekend.

On Tuesday I saw The Amazing & Wonderful Nurse Jacque, who gave me a Neulasta shot so that my white blood cell count would rise and make me fit for airplane travel. Ever since the news story broke about the cancer patient who Alaska Airlines asked to deboard a plane, Dr G has recommended his patients carry a letter confirming his medical opinion that they may travel. I carried the letter, wore a mask (to prevent catching something from another passenger), and showed the letter to every flight attendant. No one gave me any trouble. I flew Alaska Air.

The GelClair arrived at the hotel before I did -- a full case of it. I really only needed one box for the duration of my trip, but didn't realize I'd receive the entire order at one time. I put off worrying about to pack it to bring home.

The combination of Orajel and GelClair has helped tremendously. I still have about 10-12 mouth sores, and found it difficult and painful to chew over the weekend, but I did eat. And somehow managed to gain five pounds.

I spent too many hours in shoes that weren't supportive enough, developed blisters and swollen feet. My feet actually swelled so much that I traveled home in my UGG bedroom slippers, the only things that felt comfortable. I haven't had this experience before while traveling and wasn't prepared with compression socks.

When I saw The Amazing & Wonderful Nurse Jacque today to have her change my PICC line dressing, she looked at my feet and recommended I start wearing the compression socks until my feet return to normal size. Fortunately I have several pair left over from previous hospital stays. I've been in them all day and I can already see an improvement. I also plan to sleep again with my feet elevated.

My hand-foot syndrome has begun to recover. The skin is peeling from my left thumb. Did you ever pick at scabs when you were a child? I have that same irresistible urge to pick at the dead skin and cut it away. The henna did help.

I changed my fentanyl patch while away and reduced from 100 mcg to 75 mcg. I'll be sure to report this when I see Dr G on Wednesday. Maybe he will have me reduce it again. Or not yet.

My mouth tastes funny all the time and food doesn't taste right either. This feels like a new side effect to me, although I know many people go through it. I just don't remember going through this before.

And I should receive some news on next chemo steps on Wednesday. Hopefully not Taxotere. That one dose and its ridiculously painful side effects is plenty, thank you.

More soon on the Komen © blogger summit later.

Why people stop blogging?

This morning I actually took a look at the back end of my blog and the list of blogs I follow. There was probably over 100. I went through the list and cleared out a bunch of them who either I am no longer interested in or are no longer blogging.

Obviously there are two reasons people stop blogging - either they just decide to stop or they are no longer with us, unfortunately. The second group are the ones that sadden me - lost friends.

But the first group intrigues me. Why do they stop blogging? Most of the blogs I follow are health related blogs, many of them on breast or thyroid cancer, arthritis, fibromyalgia, or other lifelong ailments. So why do these people stop blogging? Its not like they are cured. But maybe they think they are. Or maybe they no longer have coping issues?

This is why I am intrigued. I think of blogging as a coping/venting tool for many. That's what it is for me, after 8+ years of blogging. My health is constantly evolving with new issues cropping up periodically (but I really wouldn't mind if I didn't have any more issues thank you) so I keep coping and keep blogging. Do these other former bloggers non longer feel the need?

The emotional impact of an ailment may dim over time and perhaps they get a false sense of security and assume they will be fine or are able to work past it and get on with their lives. Or maybe I am just really jealous that they are better and I am not? Damn.

Chronic Illness Truths

I met a woman named Julie on Sunday. I was giving away yarn from my stash that I will never use and she knits hats for homeless people. She also has health issues and understands what it is like to change your life to accommodate your ailments.

Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.

I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.

Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.

I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.

Taking the fun out

"Several studies have linked alcohol consumption to a higher risk of many cancers, including breast, mouth, throat, larynx, esophagus, liver, and colon and rectum. The risk rises with the amount of alcohol consumed."

Alcohol is evil and causes cancer. Great. Thanks. Anything else I need to worry about? Besides walking under ladders, playing in traffic, and walking by yourself in bad neighborhoods.

The latest blog post from Dana Farber's Insight (which is actually a pretty good blog) talks about alcohol consumption and cancer. The American Cancer Society recommends 1 drink a day for women and two for men. An oncologist recommends an occasional drink, if any.

My thought process from being the cancer patient is 'Excuse me I have cancer and my life currently sucks, I might want to drink more often than occasionally.' Whatever happened to the medical advice of hot lemonade and whiskey for a sore throat?

When I was 19 and told I had thyroid cancer, I was told by my doctor that my treatment was done and I should take care of myself, eat healthy, and get plenty of sleep. Thanks. I could have figured that out myself. But I did put a few years of thought into it and decided that I was going to live my life on my terms and not be 'boring'.

I was young and wanted to be a normal person and not 'that girl with cancer' for the rest of my life. So I did things my way. Yes I might drink alcohol. I might have partaken of other substances at different times in my life as well.

I don't want my health issues to rule my life. I want to be normal as much as possible. I want to do the things I want. I may not be able to climb a mountain now or ski down one but I can still go to the beach and out for fried clams. (Eeek! Fried food! Cholesterol alert!) Life requires little indulgences to be fun.

The way I see it, it is my body and my life. If I am not harming anyone else and want to have wine with dinner, I can't see a problem in it. However if you see me on a street corner drinking out of a bottle in a paper bag, feel free to interfere.

I'm so smart I could diagnose myself

Yesterday will probably go down as one of the not so greatest days in my life. Why? Because I pretended I was a healthy person. And it didn't end up so well.

Allow me to provide some of the story. We had to dig up a lot of the plants in our garden because our retaining walls are collapsing and we have to pay big bucks to a mason to fix them. It has been very hot and dry here for the past few weeks. 90s for the last few days even - which rarely happens in Boston. My poor plants which should be in the ground and in the shade are in pots in the back yard in the hot sun.

I noticed yesterday that some of them were very dry and wanted to water them. The spigot in the back yard was put up by giants and I have to stand on something to reach it. I pulled out my usual little 12" high little table to stand on. As I reached up, the table collapsed and I felt my knee bend sideways. That was a very bad moment. No one was home but the mason's assistant but he came to help me get back to the front door and inside. I could hobble.

But because of my extensive medical background, I knew exactly what to do. I went to the freezer and got an ice pack. Then I picked up the phone and called my doctor's office. I knew I needed an x-ray and possibly more. They suggested I go to the walk in clinic last evening but I declined and asked for an appointment today instead. But as I sat with my knee elevated it really started to hurt (even through all my RA/fibromyalgia meds) and I asked my husband to take me to the walk in clinic.

I saw a doctor and got an x-ray as I expected. The bones look fine (as I expected) but the doctor thinks there is ligament/muscle damage (as I also thought) and referred me to an orthopedic doctor. This is exactly as I assumed would happen. I need to call today if I do not hear from them by noon to get to see a knee doctor. (Maybe I should have just called my knee doctor first -  yes I have a knee doctor, and an ankle doctor, and many other specialists.)

They did send me home with a knee immobilizer, a totally worthless piece of equipment as it forces me to overwork my hip (and my bursitis) and causes more pain than is in my knee. They also recommended crutches or a cane, both of which I declined. But I did ask my husband to find one of the crutches in the basement as it turns out I need it for stability and weight bearing.

So one moment of pretending I was healthy allowed me to sprawl on the backyard in pain. The good side? I really need a positive here. I have a reason to sit around on my butt all day (except going to the dr and possibly getting my nails done) with an ice pack on my knee during this 90 degree weather. I am not discussing the downside at this point because I am pretending it doesn't exist. Denial? Yes. But I did know what to do and what I needed medically right away.