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.

A Teen Idol

Here is my teen idol. His name is Jack. He is fifteen (15). And he invited a simple test that will detect pancreatic cancer early on. It may also be used to detect other cancers such as ovarian and lung cancers. All these cancers have one thing in common - they are hard to detect early enough to be treatable.

I first read about him on Opposing Views. I thought it was too good to be true but he is the lead story on Smithsonian.com. We need more Jacks. We need more blood tests to detect more ailments. Especially ones that are 90% accurate like his test is.

Yesterday was a bad day

I did not accomplish much. I did not sleep well two nights in a row. My brain was in a fog all day. I tried to get some work done but did not feel I had enough functioning brain cells to get much done. I was also supposed to give a presentation 20 minutes away but it snowed so I cancelled.

I also had a fair amount of pain so I might have been cranky. There was a contractor here for a good part of the day removing some wood where we have some rot and found an carpenter ants nest. I hate those things. We have had a chronic problem with ants since we moved in. We had a pest inspection before we moved in and they found one dead ant and signs of mice.  We have a mouse terminator (a/k/a a cat) and thought we were fine. Then the ants started to show up. We could never find the source so we think we just did. The exterminator is due here in half an hour. Then the contractor will return as will the banging noises of construction. The cat and I will hide upstairs.

Last night I did get some sleep. While I don't feel 100% I do feel human for the most part - there might be some cranky pain filled b*tch buried inside. But I will accomplish work today and I will even get my lazy butt to the gym this afternoon. And maybe even cook dinner. Last night we had someone bring us pizza (in a snowstorm which is mean we know, but we did give him a good tip). I have slice mushrooms, chicken, and some brown rice so I will compile something.

Yesterday was such a bad day, when I called into work to say that I was planning on staying home today, they told me at work I sounded like crap. My husband made fun of the way I talked. Today can only be better.

This is a blog about cancer after all

I realize this is a blog about cancer and living with a cancer diagnosis. but sometimes I don't blog about cancer. Well, I do have lots of other ailments to blog about. And I try to ignore cancer so I'm not living in cancerland where its all cancer all the time.

But it does loom in the background of my life often. Well, almost constantly. Its hard to make it go away. I am ignoring it. I have one of 'those' appointments coming up that I am really trying to ignore. Its one of the appointments where there are negotiations, watchful waiting and discussions on what to do next.

I have no new cancer research to write about now. I can poke around and find some - maybe later this week. I have no pinkification to whine about except this is the time of year for recruiting for all the pink walks. I skip all those commercials. 'I can walk sixty miles for someone who has cancer' and all that cutesy crap. You won't ever catch me in one of those walks. More power to anyone who chooses to do them.

One extra benefit aggravation of developing ailments which cause pains around your body is you can take your mind down that evil road to cancer hell very easily. With cancer, you need to be aware of your body and look out for aches and pains that don't go away and linger. Well with my new ailments, RA and fibro, you have ailments which cause aches and pains that don't go away and linger. I tell myself they can't be cancer because I can blame them  on RA and fibro.

I try to ignore them and live my life on the edge of cancerland as much as possible.

I am not a patient patient

I am not a patient patient at the best of times. Overnight delivery has spoiled me (and most Americans) to expect instant gratification. To quote Violet from Willy Wonka, "I want it now!"

On Friday I went to see my pain doctor who is in charge of relieving me of pain, as opposed to cancer cootie detection and other specialties. The biggest news I could share with him was that my rheumatologist, to whom he referred me, is leaving the hospital to go to another one.

He suggested, his usual poking, prodding and contortions (does it hurt when  you do this?), that I should increase my dose of my pain patches back up to 10 mcg/hr and then suggested I see him again in six months. I made a face and he changed it to four months. (Who says you can't make faces at  your doctor or that I might be too old for it?)

There are issues with increasing my pain patches back up to 10 from 5. The upside is less pain. The downside is: the price. Can you say $95 for a four week dose? Ouch.

I was getting the patches through mail order because I used to be able to save money and pay $95 for three months. But the law has changed here and they in the evil addictive/street value class and I can only get one month's worth at a time. I understand the principle behind it that people can be addicted, blah, blah, blah. But it hurts my wallet with the copay. I have a friend who gets the 20 dose and she pays around $20/month.

I do have very good health insurance but every so often I get dinged by something like this. For instance my insurance did not cover a chemotherapy wig. But I have a $5000/year out of pocket maximum which does not include pharmacy expenses.  But it means I will not go bankrupt paying medical bills. In the end, I will be paying over $1000 to be relatively pain free each year. But I think its worth it.

There is another downside to these pain patches. I have a reaction to the adhesive. Of course I do. I don't know if its an allergy or what. I have to put on cortisone anti itch stuff on my skin before I can put on a patch which means waiting an hour.

I have gotten completely off track of my being a patient patient so allow me to haul my train of thought back. When the doctor asked which pharmacy I wanted my new prescription to go to, I said the local pharmacy so I could go fill it that day. BUT IT WAS OUT OF STOCK. Being a weekend it won't be there until after 2PM on Monday. I want it NOW! I'll just suck it up and live on Tramadol until then.

Its a bunch of numbers

With a cancer diagnosis you get a bunch of numbers. Prognosis, cancer markers, statistics, blood counts, and more. The numbers can tell us good things and bad things. We can read bad things into good numbers and good things into bad numbers. We can be told that we were too young to get that or too old to get this. We can let the numbers scare the crap out of us.

Or we can let them just be numbers.

I am not normal. I got thyroid cancer when it was very rare - approximately 10,000 cases annually. I got breast cancer when I was younger than expected. I have Rheumatoid Arthritis which was not expected - even with a family history of it. According to the numbers I should be more likely to get a different autoimmune ailment.

I have friends who got early stage cancer diagnoses with relatively rosy prognoses who are no longer with us. I have a friend with an ovarian cancer stage IV diagnosis who is still with us and doing well more than three decades later. I have friends who are still here after stage IV diagnosis who go to treatment, get periodic CT and PET scans and are doing well. I have other stage IV friends who are doing just fine and are not in treatment. I have many friends years and decades after a cancer diagnosis who are still doing fine.

I met another woman online this morning when I read her story about how she shouldn't be here either if she listened to the numbers. Our doctors can only tell us the numbers, but they can't tell us our lives.

Wow another 'day'!

Another ailment means I 'get' another day! My social calendar is filling up!

So what the hell am I supposed to do on these days? Am I supposed to wear a special color, make a sign, go to some event, tell everyone about my ailments?

I am confused. What do these days, weeks, months mean anyway? I know they are supposed to build awareness but are they just marketing opportunities. Take Pinktober for example. We don't want that to happen to every day, week, and month of the year. There should be something more to them.