That battle thing

Earlier this week, we went to see the rehearsal for the Battle of Lexington, which will be held at 530am on Monday morning if you wish to see the real thing. (I'll be sleeping thank you.) That is a battle, which led to a war, which led to the Constitution, the United States, and somehow to where we got to today with a polarized government, financial problems, and global warming. But I digress.

There has been much talk recently about Roger Ebert and how he lost his battle with cancer. He didn't lose his battle. He lived his life and then died. Where did we get this battle thing regarding cancer and other ailments anyway? A battle is not about medical ailments.

If you look at Dictionary.com we get:

bat•tle¹ [bat-l] noun, verb, bat•tled, bat•tling.

noun

1. a hostile encounter or engagement between opposing military forces: the battle of Waterloo.
2. participation in such hostile encounters or engagements: wounds received in battle.
3. a fight between two persons or animals: ordering a trial by battle to settle the dispute.
4. any conflict or struggle: a battle for control of the Senate.
5. Archaic. a battalion.

Do you see anything cancer related or medical related there? I don't. So why do we use these terms? Opposing military forces are not related to cancer. 

If one has cancer or other ailments, they are not participating in hostile encounters or engagements. 

If one has cancer or other ailments, they are not fighting with another person or animal.

Having cancer is not a conflict or struggle, its an ailment that is treated. 

And cancer has nothing to do with a battalion, even in old English.

Maybe because someone thought they made them stronger if they were battling?

Maybe because someone thought a battle or war is a better image than a person?

Maybe because someone DIDN'T think?

Please do not tell me I am battling anything. I am not. I am living with multiple ailments. I have a life and I am not at war.  Roger Ebert did not battle anything, he also was a person living with medical ailments as well.

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.

Dealing with health problems

With a nasty medical diagnosis, such as cancer, chronic illness or pain, one is left with a few questions which a medical professional cannot answer. You get to figure them out for yourself because you have instantly received an advanced degree in being human along with your diagnosis. There are five key questions to grapple with. I did not make this up I stole borrowed from the RA Guy and from here. (I like the RA Guy, he gives lots of good advice to me.)

The questions are:

1. Do we talk openly about our health problems or keep them private?

I think this is a personal decision. If you are Robin Roberts and can get the best medical care and organize a million supportive fans in no time, maybe talking publicly will work. It also means opening yourself up to a million questions and stupid requests. "Is that your hair or a wig?" "I'm sure if you take a nap you can come to my party and stay until midnight."

There is a middle of the road answer you can do what I do. Write a blog and send everyone who asks questions to read your blog. That way you can also control the flow of information. Whatever works for you. I do not recommend keeping quiet because talking about it may help with stress.

However I would be cautious in talking about your health in the work place. It is no business what your health ailments. You can just say you have health issues and need to alter your schedule to go to doctor appointments.

2. Do we ignore a new symptom or do we call our doctor?

That fine line between hypochondria and ignorant bliss. I have adopted the two week rule for myself. If it still is a problem for two weeks I start taking notes, consider the severity and then debate the doctor call. Sometimes I do a little research and find out my new symptom is part of my new diagnosis. I did not know people with fibro get headaches. All of a sudden I have been getting headaches, I now write them off to fibro and ignore them. Unless they make me cranky.

3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?

Hmmm... common sense tells me to do whatever seems will help within any limits my doctors have given me. I am not about to try yoga, no matter what people tell me, because my doctor has expressly forbidden anything that involves twisting my back and holding poses. I did acupuncture without any other consent. I just had to get over the icky needle thing first. I am very hesitant to take any herbals because of the number of medications I am on and how many problems I have had with interactions.

4. Do we push our bodies to the limit or do we play it safe?

That's an easy one for me. If I do too much I spend a day in bed. I have a new exercise plan that I can get through my entire workout and still function as a normal human being with is my goal these days. My life is carefully scheduled to allow or down time.

5. Should we fight aggressively to retain our health or should we accept our fate?

There is always hope. Never give up! I can't say anything else on this.

The medical roller coaster is not just about cancer

I admit I have been struggling in some ways for the past few months in terms of that lovely medical roller coaster. So often I think of the medical roller coaster as being focused on cancer - because cancer has such a 'fatal' 'terminal' 'deadly' 'life changing' connotation. I think 'life changing' is the best term here. A cancer diagnosis is life changing.

But also other diagnoses are also life changing. Like rheumatoid arthritis and fibromyalgia. When you are diagnosed with cancer, you usually look the same on the outside unless in active treatment. You do your thing - work, exercise, socialize - and have a life.

But with rheumatoid and fibromyalgia, you look mostly the same, might be moving a lot slower and hobbling around. But you are on the same damn medical roller coaster for a life long adventure.

The ways to calm down the medical roller coaster include knowledge, self education, exercise, and maybe even blogging.

I am coping with the medical roller coaster and I think I have been handling it worse than usual these days. I need to get my ailments under control both physically and mentally. I'm a work in progress here.

Health activism soapbox

#NHBPM Being a health activist is a new role with the use of online media. I define health activism is taking the time to learn about your ailment, share your information with others, and work to help others cope with the ailment. It can also include advocacy and outreach efforts.

WegoHealth wrote a white paper about what is a health activist tht you can read here.  Their definition is:

"Health Activists are leaders who work daily to improve the way people talk and think about health. If you are sharing your health story and helping others live better lives – you may already be a Health Activist. Health Activists are passionate about raising awareness for health causes, dedicated to finding the best information about health conditions, and relentless in their commitment to help others. They are also adept at using every tool possible to reach their communities, especially through social media."

I have some how gotten myself into this role for breast and thyroid cancer. I am comfortable in this role for these two ailments because I have educated myself, taken the time to learn about them, and am comfortable sharing information and directing others to resources that will help them.

I do a lot of this through this blog but also on Facebook and other message boards. You see me do this when I write about an article, or a website, or treatment experience. This is activism in action. This helps me cope with my cancers by helping others.


My problem now is I need to get myself to the same level of knowledge on my newer ailments - fibro and rheumatoid. If I can get myself educated on them  so I can become more comfortable with them. Will I end up as a health activist for them as well? Only time will tell. But it will help me cope.

Sharing information

Today's topic for Wego Health Blog month is choosing what information to share.

When I was diagnosed with thyroid cancer, cancer was the big C, I was young, and cancer was the killer. I quickly learned that the word cancer made people frequently run away from me. I grew to like 'selective sharing' and only sharing with those I felt were in on the 'need to know'. I didn't tell long term friends for sometimes decades.

At my second diagnosis, I said to myself, the heck with this, I am going to be a bit more open about my cancer and now am comfortable living a life that includes the word 'cancer'. This isn't to say I introduce myself to total strangers as someone who has been diagnosed with cancer. But there are times when I do openly talk about it.

I have two part time jobs. One of them is at a local cancer support organization. There I am quite open with that group as its full of people who have had cancer or who treat people with cancer. I think most of them are fairly aware of my medical background.

At my other job, they all think I know so much about cancer and its treatment because of my job at the cancer center. They do not know about my cancer, they just think I am incredibly unhealthy with a bad back, fibromyalgia, RA, tennis elbow, bad ankle, and more. They laugh at all my doctor appointments and tease me about my ailments. Sometimes I was tempted to tell them about it but then one day one of my coworkers said that every time she hears the word 'cancer', she just assumes that the person is done for. That was it. I no longer considered that as an option.

So how do I decide where to draw the line. I do not broadcast my ailments. I also don't feel the need to keep everyone, including family members, updated with minute by minute updates on the latest ailment and treatments. Sometimes I am more open about things than others. It really depends on the ailment, who the conversation is with.

If my medical issues do not impact the situation, I leave them out. If my medical issues do impact the situation, I may bring it up. If I am asked if I want to go to a museum, I will probably decline. If pushed I might tell them I simply can't stand around like that to enjoy the time.

The level of detail that I share is usually very little. However if a friend calls me up and asks about a specific medical procedure that I have had the privilege of undergoing because they are going to have the procedure, I am happy to share all sorts of details including pain level, hospital stays, recovery, questions they should ask their doctor, etc.

So maybe I still live by the 'selective sharing' on a 'need to know basis'. Maybe I haven't changed as much as I thought.

The medical roller coaster goes round and round

Yesterday I went to see a new doctor, Dr. P., to see if I have rheumatoid arthritis due to all my aches and pains that never seem to go away. I have a family history of RA from my mother and maternal grandfather. I was referred there by my pain management doctor, Dr. G.

When I got there Dr P said that Dr G had put in his notes that I had myofascial pain/fibromyalgia. I said he had never mentioned fibromyalgia to me at all. At first Dr P said she would clarify that with Dr G and that it would be treated through the pain management department as I already am. By the end of the appointment Dr P said that I probably do have fibromyalgia because I have all the signs after she pushed on all sorts of places that caused pain.

Dr P was also concerned that, because of my family history and symptoms, I could have other ailments. A family history of RA does not mean I will get RA but that I am probably more prone to getting other autoimmune ailments. Dr P also said that because of my history and symptoms this wasn't going to be a one time visit but that I would get all sorts of fun tests. So I left a urine sample, went for blood word, and hand, wrist and ankle x-rays. If everything comes back negative, she will follow up with me in six months. If anything comes back positive, I will see her in three weeks for more fun and games.

On the plus side, its not cancer. On the negative side, these things don't ever really go away. But I really am a healthy person - if I keep saying this, maybe it will come true.

Stepping away from Dr Google

It is time to step away from Dr Google. Dr Google can diagnose me with life threatening ailments all too easily. I do not believe Dr Google went to medical school, nor does s/he have a good bedside manner. Dr Google tells it like it is with no sugar coating. Dr Google says things like 'the prognosis for patients with (fill in the blank) is generally poor with low quality of life expected' and 'there is no known cure for (fill in the blank), treatment usually focuses on management of symptoms'. Dr Google sucks.

How well do I know Dr Google? Too well. I get a minor ailment - cold fingers which turn white. This is Raynaud's syndrome. Nothing that can be done about it except possibly taking blood pressure medication. Generally a benign lifetime ailment which strikes people in their 20's and 30's. So I'm a little unique that I got it later in life (but I am only 37 right now - I decided that is a good age - I was 29 for a long time). But if you ask Dr Google it can be related to Sjogrens, lupus and rheumatoid arthritis. My mind then tells me Dr Google has just diagnosed me with one or all of the above.

Then there was a little sore in my mouth which turned out to be a nothing - just a weird piece of scar tissue. Dr Google (with a little help from the dentist with no bedside manner) had me convinced it was cancer.

Then I start adding up symptoms and I have many more ailments. This one plus that one plus that one plus that one tell me that the combination means something new that I will stuck with. I can take any symptom checker on the planet and end up terminally ill in less than ten minutes.

So why do I spend so much time with Dr Google? Dr Google is far easier to reach than any other doctor. Dr Google lives on my laptop and smart phone. Dr Google is accessible 24/7. Dr Google doesn't have a secretary screening calls or putting email into spam folders.

I need to step away from Dr Google and wait for my annual physical in June. I refuse to go to my PCP any sooner unless I am dripping blood. I have no new life threatening ailments. I will be fine, unless Dr Google tells me otherwise.