Chemo again or just semantics?

I have been emailing back and forth with a friend with whom I had lost touch. His wife had died a few years ago of pancreatic cancer.  I told him that I had RA which is why I haven't been around as much recently. He replied that he has a friend who is on methotrexate - which is a form of chemo  for their RA.

Eeek! I had not considered that Methotrexate was a form of chemo. I take it in pill form weekly so its not like I go for an infusion or anything. I looked it up on Scott Hamilton's Chemocare.com and found out its true.

The thought of being on chemo again had always freaked me out. I mean who wants a port, baldness, and nausea again? But they snuck it in on me. They said it was for RA treatment, they never mentioned chemo. So I guess its easier to cope.

My mother was on methotrexate, at a lower dose than me, for years, and we never considered it to be chemo.

Which brings up a point. If a drug is used to treat cancer, they call it chemotherapy. But if the same drug is used to treat something else, can't we just call it a medication for rheumatoid so I don't have to think I am on chemo again? Doesn't it come down to semantics here?

Another Giant Storm

I am very intrigued by how winter storms are now named. I did read some semi logical government rationale (is that an oxymoron - semi logical government rationale?) Nemo brought us a (whopping big) pile of snow. Q was somewhat mysterious - just like in a Bond film. Rocky is just rocking along with snow and rain. If we are already up to R and its only February, we might even run out of letters - what does the oh-so-smart government do then? Switch to the Greek alphabet?

All these giant storms could be doing lots of things:

• relieving drought in the south, central and western states. Maybe this will be a year where the rare desert flowers bloom again.
• a precursor of climate change where we get lots of giant (named) storms (until there are no more letters) which cause a lot of storm surges, erosion, power outages, structural damage and more trauma.
• signifying it might be a good time to sell your beach front property quick before the next storm wipes it out.

We live about 5 miles straight inland (as the crow flies) at about 150' above sea level. We joke that we might own beachfront property in a few years.

Today we are getting the remnants of Rocky as he rocks his way through New England. I believe that we are not due for another storm until next week. It will be nice to have a weekend where we aren't house bound due to the weather.

These big storms are hard for me. Due to lymphedema arm and arthritis body, I can't shovel snow. Or vacuum - but that doesn't really help in a snow storm. Its hard enough for me to clean off my car.

I will get through this giant rain storm and wait for some needed sun shine to appear.

We need to make a switch

I think we, as in my husband and I, should officially switch to the Mediterranean diet. There is more research (because the researchers need to keep busy) showing the benefits of it.

Good things in the Mediterranean diet are olive oil, tree nuts and peanuts, fresh fruits, vegetables, fatty fish and seafood, legumes, white meat, and wine with meals. This to avoid are soda, commercial bakery goods, sweets and pastries, spread fats, and red and processed meats.

Therein lies the problem. My husband is Mr. Steak and Potatoes.He would happily eat beef every night. I will have to work on this. And the other problem is I'm supposed to avoid alcohol due to my medications. So I wonder does it work if you don't drink?

Anyway, we should be healthier. I hope. And deflabbed. (That's my word for it.) Well its better than the grapefruit diet.

A Lull in the Action

Yes I am enjoying a lull in the action. The action of doctor appointments that is.

I have one (yes, one, singular, 1) doctor appointment in the entire month of March. I have one (again, one, 1, solo) doctor appointment in the entire month of April. And both of those are appointments with my therapist so the odds of my needing to change into one of those little gowns are extremely slim (and they make such a fashion statement).

What shall I do with my time? I mean besides keep up with my blog. I'll have so much free time!

Daily naps would be a good option. I can use that since I get so tired these days. More exercise Doubtful because I need a a day of rest between exercise. More time paying attention to the cat. I can unless he is sleeping. He's old and needs his 22 hours of naps per day. Quality time with my husband.

Maybe in my absence the hospital will renovate the ladies room in the lobby. It does need a bit of updating - probably because it is the most used room in the building.

But in the month of May, sadly, I have one of 'those' days where I have test, test, doctor appointment. I will blissfully ignore it between now and then. Ignorance is bliss in this case. Its also a case of avoidance.

Secrets of medical costs

Someone referred me to this article which I read with great interest. First I started with this video:

Then I read the article called the "Bitter Pill: Why Medical Costs are Killing Us"

FInally I watched the second video where the writer answers questions on reactions to this story:

So where does all this education leave me? I am not as smart as I thought I was.

All along I was blaming high medical costs on pharmaceutical manufacturers who were passing on the research costs long after they were paid to the patients through high drug payments. I was blaming insurance companies for high insurance premiums, denial of claims for stupid reasons, and general ignorance.

I did not know that hospitals are a big part of the problem with their secret lists, huge mark ups, and high profits - even if they are non profit. They hide behind the HIPAA laws on patient privacy to hide their 'chargemaster' list of billing amounts.

There is also the issue of the standard CYA tests ordered by doctors out of fear of lawsuits instead of best treatment for the patient. But that is another blog post.

My take away from these videos and article is that our health care system is more messed up than I previously thought. People are getting rich at the costs of the poorest people or the ones forced into bankruptcy due to medical bills. More action needs to be take in this area.

While the Healthcare Reform Act focuses on getting insurance and medical care for more American's, it does not go far enough in addressing the financial side of patient billing and who pockets the money at the end.

New Breast Cancer Drug but at What Cost

The FDA approved Kadcyla for late stage breast cancer treatment. This is a good thing. Its about time.  And it will save many women's lives.

But I have a real problem with the financials behind it. A month's treatment costs $9800 or $117,600 annually, which apparently is about twice the costs of Herceptin. These costs will mostly be covered by insurance - and we wonder why insurance premiums are going up.

Immunogen, who developed it, expects to receive a $10.5 million pay off plus royalties of 3-5% of the expected world wide sales of $2 billion (with a b). To my tiny math brain, that means they get $60,000,000 (that's 60 million if you are having problems with all the zeros).

It will be marketed by Genentech who I assume will take in the rest of the profit after coming up with snazzy packaging and fancy ads. I have no idea what Genetech's manufacturing and promotional costs will be but I am sure their profits will exceed that of Immunogen.

But that's okay because the insurance companies will probably cover most of it - which is why our medical costs keep increasing so rapidly.

Going back to when I blogged about pricing and how it is determined by marketing people, I am sure the whopping price tag was set by marketers (those evil people) who wanted it to be high end, represent a last chance for women to extend their lives, and if its expensive it must work really, really, really well.

But at least it is finally available for the women who need it who will gladly pay any price to extend their lives. Call me cynical, but maybe I am.

Fibro what?

So I was told last September that I have fibromyalgia by my rheumatologist. I had been referred to her by my pain management doctor who had been treating me for my back pain from degenerating disks. I also had pain in lots of other places that was getting worse over the years as opposed to better. His diagnosis to my rheumatologist was myofascial pain or fibromyalgia with possible rheumatoid arthritis.

Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.

Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!

So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:

1. "In 1990, the American College of Rheumatology (ACR) listed two primary criteria for the classification of fibromyalgia. 1) A history of widespread pain involving all four quadrants of the body (right side, left side, above waist, below waist) for a period of at least 3 months.
2. The second criteria from the ACR which points to fibromyalgia is, upon physical examination, the presence of pain in at least 11 of 18 tender points when touched or pressed with force amounting to the equivalent of 4 kg. or 9 lbs.
3. More recent data indicates that there may be an increased sensitivity to pain throughout the body, pain may be migratory (move around) or may exist as chronic regional pain. Most experts are said to believe fibromyalgia results from abnormal central nervous system function. Response to stress and psychobehavioral factors may also contribute to fibromyalgia.
4. Fibromyalgia primarily occurs in women of childbearing age. Children, the elderly, and men can also be affected. Besides the defining symptoms of pain and tenderness, there are many nondefining symptoms associated with fibromyalgia including:
• Fatigue, night sweats and sleep disturbances.
• Memory difficulties and cognitive difficulties.
• Tension or migraine headaches, temporomandibular joint syndrome, rib cage pain (noncardiac chest pain), chronic pelvic pain, plantar or heel pain.
• Fluctuations in weight, heat or cold intolerance, subjective feeling of weakness.
• Ear-nose-throat complaints, multiple chemical sensitivities and a wide array of allergic symptoms.
• Hearing, vision, and vestibular (balance) abnormalities.
• Heartburn, palpitations and irritable bowel syndrome.
• Evidence on echocardiogram of mitral valve prolapse, esophageal dysmotility (muscles of esophagus not working properly), neurologic conditions causing hypotension (low blood pressure) and syncope (fainting).
• Mood disorders such as depression and anxiety occur more commonly in people who have fibromyalgia. "

Of these I can say yes to 1, 2, 3, and 8 of the 9 bullets in number 4. I don't think I have the cardio issues.

But otherwise I am a very healthy person.

Life is a verb

Every week at work, we get take out for lunch. Its our little splurge and relieves lunch boredom. We don't get anything fancy - any local restaurant will do from salads, pizza, Chinese, Vietnamese, deli, etc. Each week we start our little discussion on where to get lunch around 830am. Some people think that is a little early to start thinking about what I consider to be the best part of the workday, but some of us think that's right on time.

Our current favorite is a little Vietnamese place. We each have a favorite dish. And it comes with fortune cookies. Go figure. I didn't think the had Chinese fortune cookies in China, let alone in Vietnam. But this is my cookie from the last time we ate there.

We all thought that was a good fortune cookie as fortune cookies go. It didn't tell me about some gold in my future or anything. That was actually a good week for fortune cookies for everyone. I think we all got ones we liked.

I do believe life is a verb, as in an action word. You can't sit still because life will pass you by. But when I try to be active, I pay the price the next day.

I go to the gym three times a week, usually Monday, Wednesday, and Fridays. Yesterday I went after work. Today I am very sore in all the usual places and then some. Every three months at the gym, I am entitled to a free session with a trainer to tweak my work out.

Last time we cut it way down because my rheumatoid drugs had yet to kick in. She wanted me to up the cardio from two sessions of 20 minutes each, to each session of 25 or more minutes each.I have done this so I am closer to an hour of cardio three times a week which is a good thing.

We also cut back the number of machines and free weight sets I do to have of what it was, but we increased the reps on the few that were left. She said try 20-25 reps and one or two sets. This has been working but if I get ambitious and try to do more, I spend the next day paying the price.

My hands are not as sore as they were but other body parts hurt more. I think the RA meds might finally be kicking in but that leaves me with fibro pain, which is way more 'fun'.

But I will continually to be active in my life and not sit idly and let it pass me by.

You can't talk the talk, if you haven't walked the walk.

While I greatly appreciate the efforts of doctors, researchers, nurses, clinicians, and other medical professionals, my feelings have always been that you can't talk the talk, if you haven't walked the walk. You will not 'get it'. Sorry.

A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.

One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she has treated so many women with breast cancer and is a very caring woman, but she doesn't get it. My radiation oncologist, despite her many years of experience, does not 'get it'.

I have never had children so while I can relate to the problems parents have with their children, I don't really get it completely. I never will. I can live with that.

Dr Susan Love is an example. She is someone who is very well regarded in being an authority in the area of breast cancer, but she never had it. She she never completely 'got it'. In a quote in a recent article she affirmed this:

"While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.

“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”

Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it."

So don't let anyone talk the talk to you, if they haven't walked the walk. You should take their advice with a large grain of salt.

Once Burned, Twice Shy

When you tell someone you have cancer, you can rightfully expect anywhere in a range of emotions. Anywhere from, 'oh, that's too bad, my uncle died of it'; taking a step back 'I am late for an appointment''; or, the ever thoughtful, 'how long do you have?' Occasionally you get a nice person who recognizes that you have just been giving a life changing diagnosis and treats you normally and says something like 'can I help you at all?'

 After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked about it. I have had quite a range of responses. From a rather outspoken co-worker 'ow, that's a bad one'. From others at the gym 'and you are still here working out, that's great'. Or from friends 'when will it get better?'

In other words, I am pleasantly surprised at the positive responses. I think somewhere inside, I was expecting the people to react the same as they would to a cancer diagnosis. Because it was a big change in my life, similar to a cancer diagnosis.

With the long weekend I allowed myself some downtime where I could contemplate while knitting and watching the cat snore (that's the height of my multi-tasking abilities these days). This gave me time to think about the differences between the two words: cancer and rheumatoid.

Both are life altering. Both leave you changed forever. So why does one have to make people run away?

Another government report

There was a big interagency report released this week on breast cancer. This was the result of a requirement by a 2004 Act of Congress requiring Health and Human Services (and the creation of an alphabet soup agency - IBCERCC) to review "the current state of breast cancer and the environment research and make recommendations for eliminating any knowledge gaps in this area."

You can read more detail about the report, a summary of its findings, and the report itself (and the Act of Congress) here. If you google it, you can find oodles of information on it - critiquing the report, praising it, and summarizing it. Here's one article on it and another one.

My biggest take away, I have not read the report only the summary articles, is this (I can have an opinion even though I only read the Cliff notes version). :

"What’s needed is better coordination among researchers and increased research funding, according to the report."

I'm all for better coordination among researchers. I mean do they talk to each other and share their progress or do they sink into holes in the ground and focus on what they are doing and hide the results until they can get a patent or from fear someone will steal their idea? Or do they talk to each other and share progress between labs during the process?

All I can tell at this point is that it took an Act of Congress, a government report, an alphabet soup agency, and nine years to tell us sharing is good.

We got the message

Some friends of mine are both having significant birthdays last month and next month so I wanted to have them over for brunch to celebrate. But some things are evidently just not meant to be.

The brunch was scheduled with much too-ing and fro-ing, balancing ten people's schedules and we finally settled on today at 11am. Then we had windows installed in three rooms of our house. Which took longer than expected. We planned to spend last weekend peeling wallpaper and painting.

But it snowed so we shoveled snow instead.

The entire contents of my husband's home office is in the dining room. We peeled wall paper every night this week. But since I have (a few) ailments I am not very useful in this endeavor.

By Wednesday night it was clear we would not be done by Sunday at 11. I asked if anyone could host instead of us. Only one person had ample parking for five cars since our world is full of giant snow banks and limited on street parking.

She go the flu on Friday. I changed it to a restaurant instead which had a parking lot and took reservations.

It snowed again and there is limited visibility and driving is horrible.

We decided it was not meant to be and we cancelled. We got the message. We will reschedule for a warmer/less snowy time of year.

Are we empowered yet?

This has been a hot topic for years now, patient empowerment. Do you really know what it is? I found a definition on Navigating Cancer this says:

"Patient Empowerment involves active participation by the patient working in partnership with a healthcare team to receive the best care.

Patient empowerment begins with leaning about one’s own illness or condition, and participating in treatment decisions. It continues as a process, first by keeping a full and comprehensive record of one’s own medical history. Diagnosis, treatments, and medications are tracked by the patient, as well as symptoms and treatment side effects.

Through the process of patient empowerment, patients openly communicate with their healthcare team, contributing to the whole picture and individualizing care. In doing so, physicians are encouraged and enabled to provide optimal care in partnership with their patients."

I think I became empowered years ago. Back in the 1980s when I was younger, I didn't ask as many questions but you can be sure by the 1990s I was good at asking questions and learning. By the mid 2000s, I was on top of it because I had my friends, the internet and Dr. Google.

I now have rules for myself that I think should apply to everyone:

1. You can't have an ailment unless you can spell, pronounce, and define it.
2. You can't be on a medication without being able to spell, pronounce it, and understand the big things it does, why you are on the dose you are, and what are the main side effects of which  to be concerned.
3. You must be able to talk to your doctors about what you have and how you are doing and not blindly follow their advice like a lemming.
4. Finally, you must be comfortable with your treatment plan.

 If you aren't empowered its time to get to work.

Cutting back

In the past several months, I find I run out of steam between my two jobs, home life, social life, etc. I decided I needed to cut back on life - to allow more down time, naps, and sleeping in general.

Five years ago, I was happy to expand my life to add more work and do more things. That was great. I was through cancer treatment and feeling good and we even took a vacation to Acadia National Park for hiking and biking.

Then I had my gall bladder out and my back pains started. Now my gall bladder is healed and my back pains have a treatment plan so they are usually under control. unless I do things like stand, walk, sit, or lie down for any length of time. My life slowed down some. I stopped some of my more aggressive activities -  no more skiing down the fall line or bike riding for me.

I juggled and coped. I worked two part time jobs. I went to northern Wisconsin and rode a scooter on an island in Lake Michigan and enjoyed other vacations. I did volunteer work. I worked about 35 hours/week between the two jobs. I would usually work part of each weekend day

In the last several months, this has all become a problem. Between the RA and fibromyalgia, I need more time to rest between work and other obligations.

At my first part time job where I go to an office 15 hours/week. I have changed my schedule to be 3 six hour days one week, followed by 2 six hour days the next. This will mean meet my obligations but I get to have short work days where I can come home and rest as needed.

By the end of February my second part time job will be down to 10 hours. During March, I will take care of some specific obligations that were previously scheduled. Then as of April 1, I will not do any nights, weekends, or non-local events.

I can't. I tried. I go to a meeting at night and then need to sleep in the next day to recover. I need time off on weekends to recover from the week. I have six weeks left to get through before I can start my resting time. I will have a count down to see if I can make it.

Your life online

In this digital era, we all have an online presence. And it will follow us for the rest of our lives. Once something is posted online, its hard to erase it. You can delete it but if anyone has copied it, it is completely out of your hands.

When I first started blogging I was somewhat concerned with privacy and how open I would be about my personal life. Now I am also on Linked In, Facebook, and more online communities that I can remember. The concern if I ever wanted to look for a job and what if they found my blog and how (un)healthy I really am and would never hire me due to the fear that cancer cooties are contagious or that I might drop dead at my desk?

That never happened. I did look for a job at one point and got it and they still don't know all about my health (and I have not dropped dead at my desk) so I think I am safe.

However, I am careful on line. I do not blast my political opinions at everyone on Facebook. I do not spew profanity laced, misspelled tweets. I try to write articulately so I make sense in my blog posts.

Sometimes I wonder about people who do these things ever wonder about the impression they are leaving with outsiders? I am personally turned off by some diatribes online that I unfriend people or leave groups. I do this also if there are too many unprintable words or enough misspellings that warrants a trip back to high school English class.

This morning I found a good example of this where college seniors are being forced to clean their online profiles so they do not impinge on job hopes. The advice given is don't write anything you wouldn't want a parent or employer to see.

Well I don't really do that because I wouldn't be too happy if my boss read my blog post as I like to keep my personal and business lives separate. But I do write with the knowledge that what wouldn't my mother want to see - she reads my blog and follows me on Facebook - so its really true for me. But it does keep me in line and help keep the profanity level low.

Cancer awareness

I received an email the other day reminding me about getting regular cancer screenings and awareness. I don't think I need much more awareness. I am plenty aware. And I get regular cancer screenings. And more than the average bear. I don't need any more awareness. I would prefer unawareness personally.

But with my  medical history, they need to be sure they haven't left a molecule unscreened for potential cancer cooties.

If you need any cancer awareness I'm happy to give some away.

On being an inspiration

Yesterday I went to the wake for a friend, Sue, who had been diagnosed with breast cancer 21 years ago. When I met her in the breast cancer support group I used to attend probably around five years ago, she had been stage IV for a number of years - probably more than a dozen.

She was quiet when she started attending the support group but then started to open up about her story. She had a cheerful smile and a twinkle in her eyes. No matter what she was going through you would always smile. Over the years, I helped convince her to go on a Casting For Recovery retreat and watched her learn to fly fish - we never caught anything but it was the fun.

I stopped attending the support group several years ago but would still see her at events hosted by the center which runs the group. She was always smiling and poised, never letting the inner stresses dampen her spirits.

I met her family yesterday. Her husband, who I had never met before, asked how I knew her and I told him about the breast cancer support group. He said that it was a wonderful little organization and told me the story that she had told him. One of the other members of the support group came up to Sue and told her that she was an inspiration to her on how to live with breast cancer.

I thought about that and decided that I agree. She had late stage cancer and greeted the world with a smile and a twinkle in her eye. She didn't let it stop her from trying something new and having fun. I am inspired as well.

Weekend recovery

Most people use the weekend to recover from their work week. Today I am recovering from my weekend. My husband only got mad at me a few times for doing too much (because he says when I overdo things I have a tendency to be cranky and he would prefer me uncranky) and today I am paying the price.

Friday it snowed. A lot (in case you have been living under a rock and didn't notice). I went to the gym, my therapist, and made brownies and fish chowder. And did some work. Saturday I did a little work, peeled some wall paper, went out on my snow shoes (just on our street - I wasn't stupid and went off in the woods or anything) and took pictures of all the snow.And did some knitting.

Sunday I peeled more wall paper, helped with more shoveling - meaning I cleaned off both cars and started them and got one out of the driveway. The other required a lot more excavation.

Our neighbor was an absolutely life saver as he went around with his bob cat widening the road on Saturday afternoon and then helping clear driveway openings on Sunday for the five houses on the street.

Then we went to help a friend get her car out of long term parking where it had sat during the entire storm. She just needed a little push from my husband but had been very concerned about how much digging might be needed. We got a take out for dinner and I went to bed early.

While driving around we were  amazed at how narrow the streets are, how big the snow drifts, and how much snow in general there really is.

This morning, both arms are very sore, and my back. And in general I feel like I was run over by a truck. I will take it easy for a bit. The contractor who was here last week is coming to get his tools out of the basement but I have no idea how he will get them up these stairs and across the lawn which is buried in snow.

Then I will drag my battered body to the gym and home again. I have to get some work done today but it will involve a lot of sitting around.

A cure for lymphedema

I  had heard about this a few years ago and was told that it was only in experimental stages and not yet ready for use regularly. However it seems enough time has passed so that it is now becoming a reality.

This is nice progress to see that something was too far off into the future to be a reality to end up being put into use.

Oral Parity And What Its All About

Oral parity is (in my non medical person, layman English with a touch of chemobrain and fibro fog) where an insurance company covers an intravenous medication as a hospital visit but in a pill form covers it as a pharmacy benefit and only covers a smaller portion -  $2300/month co-pay in one example.

The insurance companies like it this way because its one less thing to cover. From the doctor and patient perspective its a barrier to patients receiving needed treatment. There is a big "who-haw" going on about this in the insurance world as well.

I have never understood why pharmacy benefits are so different and so separate from other medical coverage. And don't get me started on vision and dental care. These aren't optional things in maintaining good health and should all be covered equally.

But this oral parity thing should not be lumped into the same category as other medications. It highlights the problem with the pharmaceutical industry gouging over charging the American patient to 'cover their research costs and high salaries and huge employee perks still offered to all of their employees'.

If you get a new brand name prescription drug, it comes in lovely little packaging, probably has a massive marketing campaign attached to it. I had one that came with the pills were color coordinated (or vice versa) with the bottle's labeling. Another one, have more designer time put into packaging that was needed. Finally, I have one that comes with a 20 minute instructional DVD on how to apply and dispose of the patch in your introductory package from your doctor which includes a coupon to cover the copay on your first month's treatment.

In the marketing world, this is all part of branding. A new product is introduced and all parts of its packaging, positioning, pricing come into play. A marketing plan includes four P's - product, price, place, and promotion.

A target sales price tells a lot about a product. If a prescription cost $5 retail, do you think - why is it so cheap? Does it work? If a brand name orange juice is $3.99/gallon and another of the exact same product is $1.00/gallon. Would buy the cheaper one simply on price or do you think it must be lower quality and read all the packaging to see if its from concentrate? If a prescription costs $5000/month do you think 'It must work really well if its that expensive!'. Pricing implies a lot.

Next is packaging. If that orange juice comes in a carton where you can't see the product vs one in a fancy glass bottle, what do you think? Is there settling in the glass bottle that is hidden in the carton? Do you want to see the juice? Is the fancy glass bottle making it 'greener' or give more value? Same with pills, are they in a jar or those stupid blister packs (that are  hard to open with RA)? Is the box with the blister pack or the jar packaged in a nice little box with all sorts of packaging and promotion and benefits of the medication as well as the warnings.

Finally, positioning is where do you want the product to have the appeal? If they show women of all ages and races in their ads for a bone density product or should they only show little old ladies who don't have the 'dowager' hump because that is what the product is supposed to avoid. They make the packaging and price and add it with the positioning to make the branding to make the high price bearable.

This takes us back to the huge problems inherent in the medical world where insurance companies and providers are making decisions. Oral parity is only a symptom.

Blizzard warning

There is an itty bitty snow storm coming our way. Everyone needs to be off the road by noon. No on street parking. The subway is shutting down at 330. Its the end of the world!!!!

I am moderately concerned about this. My real problem is I can't shovel so I am dependent on others to remove snow so I can leave the house. I hate being dependent on others.

But I do have plans. This morning I am going to the gym and then to my therapist. at 1030 am. I should be home at 1130, after a quick stop at Trader Joe's and will stay put until sometime tomorrow.

Tonight for dinner I am making oven baked fish chowder. The recipe is similar to this one but does not require stove top cooking at all. Its completely done in the oven. I might also make some cookies - half a batch - enough to satisfy cravings but not enough to blow our diets. Besides someone might appreciate them after shoveling two feet of snow with the five foot predicted drifts.

Because of the storm, my husband's job is closing early (an Air Force base) and they never close early.  Once he returns home this afternoon we are putting the living room back together. We have had construction work done with windows and rotting wood replaced and the contents of the living room, dining room and my husband's office have been stored elsewhere in our house. Tomorrow we will put the dining room back together. This means I will supervise furniture moving and reconnect the DVR.

Sunday my husband will remove wallpaper in his office and prep for painting it. Again I will supervise.

I could get used to this supervisory thing but I don't like the dependency part. Crap. I want to take my snowshoes out and take pictures of the snow falling.

From avoidance to cranky

I am in such a cranky mood. Let this be a warning to those who cross my path today. Yesterday I started in avoidance mood and ended up crabby. That when to grumpy. This morning I am cranky.

So how did this happen. I was in avoidance mode because of my doctor appointment which went fine) as fine can be with an hour of unexplained wait due to rude nursing staff who preferred talking about their boy friends, cell phones, caller ID, and the weather forecast).  I ended up with blood tests in six months and blood tests, ultrasound, and follow up in one year. That's just fine.

Then I had to go to a meeting which started early to accommodate someone's understandable scheduling request but was full of unorganized and critical people who were happy to nitpick and and express opinions but not volunteering for much work at all. I heard a couple of times 'are we done yet'? I may need to  remove myself from the committee. Not over the nitpicking - we want to do things right but because of the lack of help they are providing. But I was already crabby so who am I to complain?

Next we have a tiny snow storm forecast for tomorrow and well into Saturday which will spoil all my Saturday socializing plans that I was looking forward to. Yesterday morning we were in the 3=6" range, by lunch time the double digit predictions were appearing and growing. And I can't really shovel snow or go out in play in it much - I might break out the snow shoes (unless my husband hid them on me) if we really get the predicted two feet of snow.

This morning I have to go to work after a meeting last night - which means I didn't get enough rest. And it doesn't help that after work I have to go to another work related networking event. I can come home after work and rest for a bit but it still means going out another night in a row - can you say extra crabby?


On top of all this, we are having windows replaced in the house. The plan was to be done by the end of the day tomorrow. They had a slow start but have been making great progress. Our current agreement is that we will talk this afternoon and see if they can finish before the storm (doubtful) and when they can return and finish which means rescheduling the carpet cleaning and the cleaning lady and the room  painting. Our house is in chaos as three of the six rooms have been construction zones for ten days already.
Finally tomorrow, unless it is blizzarding by 8am, I will go to the gym and then go whine at my therapist and be home by noon, ready to be snow bound for 24 hours. Maybe I can take naps and get caught up on my sleep and required rest. But I have work to do after last night's meeting.

Avoidance mode

Today I am in avoidance mode. I have one of 'those' appointments today. I don't feel like talking about it, I'm a tiny bit stressed so I am going to the gym. Depending on the result, I may talk more about it later.

I'm also avoiding thinking about the stupid snowstorm on Friday might ruin my social life on Saturday. Grr.

They really don't know

A few weeks ago I blogged that its really just A Bunch of Numbers on how doctors just give us numbers and that's all they are when we hear statistics about survival, prognosis, age or whatever from our doctors.

Now a doctor says the same thing in this article, A Doctor's Struggle with Numbers.

"Oncologists are notoriously bad at predicting survival, and none of us wants to be known as “the doctor who told me I would be dead by now,” the doctor who made a prediction of imminent demise, sending a family into a terrifying tailspin of goodbyes, only to be proven wrong and subsequently mocked for years to come. One of my patients, upon being told by another doctor that she had two months to live, held Christmas in April so she could spend one last holiday with her grandchildren. She survived to see two more Christmases.

At the same time, we need to be truthful and give guidance to people who want time to prepare, time to write wills and pay off debts, to say goodbyes and to leave instructions, to tie up the loose ends of a life now heavy with meaning.

We try to provide hope, but not false hope.

So we give ranges, starting with the best estimate of survival, because my patients have told me they shut down after they hear the worst estimate. We talk about setting goals, about maximizing quality of life, because we don’t have much leverage with quantity of life. We emphasize spending as much time as possible with family and friends, and as little time as possible with people wearing white coats. We tell them we’re not going to give up if they don’t give up.

But the truth is, we don’t know."

I always appreciate honesty from my doctors. If one of my doctors said to me, instead of giving me a range, something like 'statistics say you have a 10-20% chance of [fill in the blank], but my feeling is that you are on the high end of this due to your medical history'. I would be very appreciative of this little 'translation' or personal input from the doctor.

I can understand the doctor's point. They only have the numbers given to them but quoting statistics learned in medical school does nothing for me. Please add in a little bedside manner for me. Thanks.

Keeping up with the Jones'

If all your friends jumped off a cliff, would you? The latest fashion in breast cancer treatment is to have a mastectomy, even bilateral, at the least sign of breast cancer. The celebrities are doing it, so why shouldn't everyone else?

Because it doesn't necessarily mean the patient will have a better outcome. So why do patients opt for a much more drastic option when there is a significantly easier option?

The answer seems to be fear of recurrence. The professional reply is that 'No doubt, oncologists could do a better job calming women’s fears and educating them on the long and painful recuperation period involved with breast reconstruction following a mastectomy.'

Not so fast. I know many women who have gone through a breast cancer diagnosis who take time to think and make a rational decision that they really want two things:

1. Cancer out of their bodies
2. Not have to have such intense monitoring for the rest of their lives.

I do know some women who have not made as deep a thought process (like me) and did what the doctor advised. But many others have had a bilateral mastectomy for the peace of mind. Its not keeping up with the latest fashion.

Happy RA Awareness day, a day late

Yesterday was RA Awareness Day, the first one, so we went out to dinner with my parents because my mother wanted to celebrate. She has had RA for over 20 years. We didn't know if we were supposed to wear a special color or not.

It was also Ground Hog Day and Punxatawney Phil did not see his shadow. This lead to some discussion. Does it mean that winter is over as we know it for the year? Or does it mean it will fade away? Or do we really care because he is not accurate anyway?

RA Awareness Day did make me aware that I need to learn more about my new ailments. There is a lot I don't understand. I was attempting to reading this announcement on an important new development in the diagnosis of RA and it reinforced the thought I really do not know that much about it. Its about antibodies in carbamylated proteins (which makes me think of caramelized onions) if you really need to know.

My goal now, or another one of my goals, is to learn more about my new ailments before the next Rheumatoid Awareness Day. I have a year. There is hope.

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.

Medical research can do nothing

 

But marketing can make you believe it did. I am overjoyed I tell you, overjoyed to read the news:
"Drugs to treat fibromyalgia just as likely to harm as help". Yes it is true. If you think Savella, Cymbalta, or Lyrica will help my, or anyone else's, fibromyalgia you are a victim of advertising and marketing. 

"“This is a very important study,” says Fred Wolfe, M.D. of the National Data Bank for Rheumatic Diseases. “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.”"

And its not that the drugs don't necessarily work but that the side effects can cause more problems than pain they resolved. Great. Years of medical research down the toilet. (This is an example of while they had great intentions in their research they forgot the key phrase 'do no harm'. It doesn't help if a medical advance comes at a great expense to the patient. They achieved their goal but forgot about us patients. This is one example of many out there.)

Since I have been diagnosed with fibromyalgia so many people have said to me 'don't they have medications now that you could try?' The answer is yes they do. And I have tried Savella and Lyrica and I think Cymbalta already. I didn't have as many side effects but they all stopped working for me. And they interact with other medications I take so they have to be changed as well.

They should do more medical research and pay attention to the overall well being of the patient, not just resolving the pain.