Saturday, November 30, 2013

Day Two of Pajama Girl

More pajamas for me. To continue yesterday's sagas, I finally got out of my pajamas in time to take my younger niece and nephew shopping with my husband. The kids were happy with books, ice cream, and a music store where a weird piccolo was purchased. We came home in time to watch a movie with popcorn. Then we proceeded back to my parents to eat left overs. After which I took my older niece shoe shopping for her birthday.

I was tired by the time we came home so it was pajama time again. Today I am still in my pjs at 11 am and promise to take a shower shortly before going to an early dinner.

The reason for my pajama girl discussions is the contrast in my health from a year ago. Last year I was just diagnosed with RA and fibro and had much more energy and capacity for doing things with others.

What a change a year makes. I need more naps. I need more rest. I have less energy. I just get damn tired too often. Crap.

Today I will go to the early dinner and come home for PJ time again. Tomorrow life might begin to return to normal as I will stay home except for a quick trip to the gym.

Friday, November 29, 2013

Today you can call me 'Pajama Girl'

I have been very busy recently. I worked Monday and Tuesday. I made pies and did all sorts of things Wednesday. My brother arrived Wednesday evening with chaos (four nieces and nephews) and we had spaghetti and meatballs and salad for dinner. Yesterday morning we cooked more - my older nephew helped make a cabbage dish and my younger nephew helped make the scalloped potatoes. We went for a walk. I was exhausted by 2pm but went and picked up my aunt and uncle and we went to my parents house for a big dinner where we all ate too much. By 7pm or so, I was done for the day so my husband brought me home.

I went to bed early so I could recover and get to today's planned activities. These consist of buying a birthday present for my younger nephew who hit the ripe old age of 9 recently and recovering from the past two days. He found what he wanted on Amazon so it is now en route to him and I got to stay in my pajamas. Everyone else has taken a shower and gotten dressed.

My brother started calling me 'pajama girl' in that loving and sarcastic sibling tone - evidently I wasn't setting a good example for the kids. I will take a shower shortly but the cat is stressed because too many children have been interrupting his naps and right now he is snuggled up against me to recover. When I over do things (like I have for the past few days) I need time to recover from the exhaustion.

I have probably less than an hour and then I will take my younger niece and nephew to the used bookstore and a little local shopping. This will be local shopping, where you park the car in the center of town and walk around to the different stores - like in the old days. No malls will be involved.

Then we will head over to my parents house for some more food - left overs. Because we didn't eat enough yesterday and there are lots of left overs. After that I will come home and put on pajamas again.

I did mean to go to the gym today but I don't think that is happening. Maybe tomorrow. Or maybe I'll be pajama girl again.

Thursday, November 28, 2013

About them bones...

Cancer has a way of doing things to your bones. Never mind the evil metastases that can be rather nasty. But the cancer treatment can do a number on your bone. Some treatments cause bone loss. While our immune systems are compromised it is harder for the body to grow healthy bones. The result is osteoporosis which makes one more susceptible to broken bones.

After cancer, we learn to appreciate life a little more. So on this Thanksgiving Day, take a moment to say thanks for still being here after cancer and take that wish bone and wish for a healthier life without cancer.

Wednesday, November 27, 2013

You would think I had this under control

I never remember to take my pills. There I said it. Its a combination of being a space shot and well... being a space shot. I remember my morning thyroid pill 99.9% of the time. Its been 32 years so you think I had that one down pat. Then the rest of my day gets complicated.

I have a whole pile of pills that I take at dinner time. 98% of the time that happens as well.

But the rest of them, forget it.

Here are the complicated ones:
  • I am supposed to split up my calcium pills and take one in the morning and one in the evening in the 'pile'. That never happens. I have to take it four hours after my thyroid pill which puts it in the middle of the day. I NEVER remember that one.
  • I am supposed to take a different a Xantac in the morning. Ditto with four hours after my thyroid pill, ditto with NEVER remembering.
  • I am supposed to take pain pills as I need them every four hours or so through the day. Then I am supposed to take one last one just before bed. I am at about 40% on that one.
  • I am supposed to take Lyrica twice a day for my fibromyalgia. I am running about 30% on that one. I really have to figure it out. I can take it an hour after I take my thyroid pill which helps because I usually am still at home. But yesterday I remembered on the way to work, put a note on my phone so I took it at 3 pm when I got home from work. I said I would take the second one just before bed. That didn't happen. I dropped it into the cat's water glass on the bedside table and it was floating there this morning.... (Yes the cat has a water glass because otherwise he would drink out of my water glass.)
I have on of those daily pill boxes and use it. What I think I need is a separate pill box to split up the ones I need to take throughout the day. Damn. I have to do something. I do not have it under control and am not willing to lie to my doctors about it. They can get very pushy which they should.

Tuesday, November 26, 2013

Helping your cause or not

Yesterday at work a co-worker said she was trying to find a pink tool set for her home repair inept daughter who was moving into her own place. She said that Komen (for the Cure) had them. I said to her that she should not buy from Komen as their money does not go to cancer research but to pinkification and events. She hadn't realized this and was glad I told her.

She is someone who has never had breast cancer (yes I really do know people who have never had cancer) and was really out of the whole cancer conversation. Her husband had prostate cancer but that doesn't have a pinkified bandwagon to hop on. But I digress. She will find the pink tool set from another source and not give money to Komen.

[And why does Komen sell pink tool kits any way? I mean how is that helping breast cancer awareness and research? Really?]

You may not know this about me but I have become addicted to knitting and crocheting. I am a member of SABLE (Stash Acquired Beyond Life Expectancy). I have realized the depths of my addiction and have started selling my wares at local craft shows. I try to sell at craft shows that are fundraisers for local schools or other organizations. I have done three shows this year - two benefiting schools and one a temple.

I am now signed up for three more shows - two to benefit schools and one which is a fundraiser for a team in the Relay for Life in Smithfield, RI. I had two shows to pick from that day - one for a school and one for the ACS. It was a no brainer for me. I went with the one for the ACS. I can't always afford to donate to as many causes as I have in the past these days but this way I am donating to a cause that really means a lot to me.

I find this to be a really creative way to raise funds for a worthy cause.

Monday, November 25, 2013

Blood tests for breast cancer?

You mean maybe we could skip the annual mammogram and just have another blood test? That would be too cool. Now I couldn't read the article without subscribing to another magazine but suffice to say the abstract is promising enough:

"A new blood test may be able to detect the early stages of breast cancer, researchers say. Scheduled to begin vigorous clinical testing in early 2014, the test successfully identified the presence of breast cancer cells from serum biomarkers in preliminary testing, a huge step forward that could make breast cancer testing more widespread and more regularly detected early..."

Wouldn't it be nice if a test could be replaced by a blood test? How much money would be saved? How much time could be saved? Mammograms and MRIs only after an older age - 55? - or for high risk groups? This is something I would call progress - of the good kind.

Sunday, November 24, 2013

Another Article I Obviously Missed

How to Fight Off Cancer:
  1. Eat right
  2. Exercise
  3. Manage Stress
  4. Get Enough Sleep
Can I just say better late than never?

Or, can I have a do-over?

Or, I'll get right on that?

Saturday, November 23, 2013

Prescription Dollars Wasted By 913 Doctors

This kind of thing really pisses ticks me off. Everyone in the country is trying to do their part to help reduce medical spending. Most people really do try. Patients get generics, are taking better care of themselves, doctors think about costs when suggesting treatments, hospitals are trying to manage their costs in many ways, insurance companies are managing and lowering their overhead costs.

Then we have a bunch of 913 loser doctors who prescribed name brand drugs without allowing for substitution by generic. Now I realize that some people need the name brand drugs  because the generics are not the same for them. But some investigative journalism was done and found out about these losers.

A small portion of doctors nationwide is costing American taxpayers big time because of their tendency to prescribe name-brand medications through Medicare even when generics are available, according to an analysis by ProPublica, a nonprofit organization producing "investigative journalism in the public interest."

The biggest offenders are 913 practitioners who, thanks to disproportionately prescribing name-brand drugs, cost taxpayers an extra $300 million in 2011, say ProPublica's Charles Ornstein, Tracy Weber and Jennifer LaFleur. Each of these doctors wrote at least 5,000 prescriptions that year, according to the report.

$300 million a year is not chump change. And these doctors had ties to pharmaceutical manufacturers. So if you multiply 913 doctors times 5000 prescriptions (pause while I find a calculator because my brain is not that smart 5*3=15, carry the 1, 5*1 is 5 plus 1 equals 6, 5*9=45) equals 4,565,000 prescriptions each year. 

And think of that year after year. $300 million and 4.5 million prescriptions times kickbacks which send them on fancy vacations and secret accounts in the Caymans at the expense of the American taxpayer through Medicare. Now you understand while I call them losers.

I am glad about this piece of investigative reporting. I hope those losers now get fined, lose their medical licenses and have to start paying back. I also hope Medicare fixes the loophole.

Friday, November 22, 2013

Best cancer blogs nominations

Best health blogs 2013
This year Healthline has nominated my blog as one of the best health blogs of 2013. While I am very honored to be nominated again, I never quite understand why they include me.

Now they are running a contest for the best blog. The winner gets $1000, second place gets $100, and third place gets $50. You can vote from any US based Facebook or Twitter account once every 24 hours.

While any bit of money is welcomed, I know there are others who are not as well off. If I had my choice I would say to vote for Ann over at Breast Cancer? But Doctor I Hate Pink! and vote for her blog.

The reasons are this: She was diagnosed two years after me, had a a recurrence and now is living the stage IV lifestyle which includes missing one salary (hers) which I presume means money is somewhat tighter in her household than mine. Stage IV means you live scan to scan, treatment to treatment so its not a lot of fun either. She won last year and I hope she won last year and I hope she wins again this year.

So please think of me, but vote for Ann

Thursday, November 21, 2013

I made it

The past six weeks of my life have been indescribably stressful and fatiguing for numerous reasons. All I needed to do was get to November 21 (which is today you will note) and I can relax and life will go back to its normal pace. The reasons for my stress were:
  1. Both my parents had health issues - the exact issues are their stories to tell, not mine but I will say they both have a long road ahead of them but they should be fine in the end.
  2. I had three craft fairs recently which took entire days out of my weekends and made me want to crawl back into bed for a week after each.
  3. I have had a few minor medical issues to deal with but they are dealt wit. Its just the time that it took to deal with them.
  4. I volunteered for a six week research project which helps with breast cancer research as part of the DOD research programs. It was enlightening, optimistic, and enjoyable. But it was a lot of work and ended up with the past three days spent in a hotel outside Dulles airport in meetings discussing things. 
  5. I can't remember the rest but there was a lot going on my life.
Sadly I must say that an old friend of mine was strangled by her husband this week and her two babies were killed as well by her husband who then took his own life. It was a very sad occurrence that requires a certain amount of mourning to cope.

Now that I have a little more time in my life, I can take some needed time to reflect and reassess after such violence hits so close to home.

I made it through a very hectic time and can take some time to mourn before the holiday next week.

Wednesday, November 20, 2013

Cancer staging - take two

When I was diagnosed with breast cancer in 2007, I was overly concerned about staging. We all were. 'What stage were you? How long has it been?" we carefully asked each other and compared notes. We introduced ourselves to each other and whispered "what stage are you?" and "how do you feel?".

[There is more on my staging here. If you want a basic overview of how they get to staging read this or go to and look up your type of cancer.]

Now I will talk about reading between the lines in my non medical point of view. I never went to medical school but like any cancer patient I feel like I am medically educated  now.

Things I have learned:
  • Your initial staging can be wrong. When you have surgery, they try to give you a quick staging that is later validated by the pathology lab to confirm it. My surgeon refused to do this because he said they have a 50% error rate, so I had to wait an agonizing four days to find out what I really was. Since then I have heard numerous stories from patients being told that 'first my doctor said this but then the lab report came back and he changed to that'. I think I am glad I waited up front to get the real story.
  • Your initial staging can be wrong months later. I know of two stories months out the doctors changed their staging. One was a local newscaster who was diagnosed with breast cancer at stage III but later was told she was only stage II. Would this have changed, and eased, her treatment? I don't know but it still would be upsetting.
  • No matter what stage you are, there is still life after cancer. Just recently I met a woman whose children running a fundraiser for a neighbor with pancreatic cancer. She was so upset. She had no idea how I knew anything but I talked to her for a few minutes and she seemed to calmed down. Stage IV is not a death sentence. I have a friend who is over 30 years out from a Stage IV ovarian cancer diagnosis. Another friend recently died after 17 years at Stage IV breast cancer. A third friend is 6 years out from a stage IV diagnosis and is not even receiving treatment because she has no symptoms. If have more stories if you want to ask...
  • Some cancers come with a stage IV diagnosis automatically, lymphoma for example, because they are everywhere. But that doesn't mean they are a death sentence any time soon.
  • All cancers are not a death sentence. I can tell you stories and introduce you to people who are decades out from diagnosis and doing just fine thank you.
Now six  years out, we don't ask other 'what stage are you?'. We ask each other 'do you want to meet for coffee?'. We talk about life, shopping, holidays, work, stupid people, bad drivers, the latest news, the idiots in Washington, planning fun events, issues with relatives.... You know the things normal people talk about.

Every so often we talk about our next scans or doctor appointments but they do not dominate our lives. We do might flinch when we hear about stage IV cancer diagnosis because we know more about what it really means. We need the whole story behind it before we can discuss it calmly. We know better than to jump to conclusions.

All I can say is cancer takes on new meanings six years out.

Tuesday, November 19, 2013

I'm still me.

I may not be the same as I was ten years ago, five years ago, or even a year ago but I am still me.

I don't work as much as I used to. I go to the doctor more than any normal person. This year I should end up with just under 50 doctor appointments - which is down from a high of 80 or so a year.

I don't get out and do as much outside as I used to - skiing, skating, hiking, biking, roller blading and more have gone by the way side.

But I still do the things I like to do that I can. I just know they can take a lot out of me.

I feel sometimes I am the recipient of blame or finger pointing for all my health issues. Its not intentional but I know I have to control what I do so I spend fewer hours in pain recovering from what were previously normal activities. I am getting better at saying no to requests for things. I am learning to stand my ground and walk away from opportunities that would overtire me.

My husband makes dinner probably twice a week now. I also try to make something each week which can be eaten for a few nights. Going out to dinner can take more energy than I want to use.

But I'm still me. I just don't move as fast and need lots of naps.

Monday, November 18, 2013

Oopsie, they made a boo boo

Last week, it was announced by those that be in power that many millions more Americans need to take statins to reduce their heart attach risk. I suspected that this might be an evil ploy by pharmaceutical companies to earn a few bucks....

Well now it turns out that made a big fat boo boo and the calculator/algorithm that was proposed, doesn't work. They did things like using data from the 1990s when more Americans smoked and drank and all sorts of other basic things. This is an example of why more research is often need to confirm things.

So there isn't a  magic pill in statins for millions. Just like there isn't a magic pill for the rest of us.

And don't believe everything you read...

Sunday, November 17, 2013

Off I go

Today is the start of four days of a crazy schedule for me. Its 545 am on a Sunday and I am up and have to leave to a craft show in 1.5 hours. This means I will be carrying things, standing, and being perky all day. I hope to make some money and should be home by 3pm or so. These always exhaust me.

Tomorrow morning I need to get things ready for the cleaning lady (meaning cleaning for the cleaning lady) and leave for the airport around 7am. I am going on a business trip which is full of meetings. I see an airport and a hotel so it doesn't matter where I actually am (which is Dulles). (Note to burglars my husband is not going and he will be backed up by the cat.)

Once I arrive, here is my schedule:
Orientation in the afternoon
Dinner at the hotel
Two hour meeting

Meetings from about 9-5
All meals at the hotel
Group dinner in evening.

Meetings from about 9-2
All meals at the hotel
Rush to airport
430 flight home.

Its actually a very interesting trip and I will share more later. But my concern this year is that my body will not be able to keep up. I get so exhausted so easily. I need so much sleep and rest these days.

But I will grit my teeth and bring lots of pain pills with me.

Saturday, November 16, 2013

Damn, more meds!

And an expensive one at that. My pain doctor put me back on Lyrica. We tried it about four years ago for the nerve pain issues I was having with my back. We decided it didn't really work for me after about 9 months so I went off it. But now that I have been diagnosed with fibromyalgia, my doctor is suggesting I try Lyrica again.

I don't have a problem with it. My fibro pain has been pretty bad. Just sitting still, knitting, watching TV, driving, or whatever, all of a sudden I will get a bone deep pain in my arm that shoots up to about a 9 or so. Then it goes away. So its no like you can treat it specifically. Sometimes I ice it afterwards if there is any residual achiness. I get other pains as well.

These are all signs that my fibro is active. The decision at my diagnosis was to treat my RA first and see if we can get it under control and then focus on my fibro. So now we are at that point.

I went and picked up my prescription yesterday and took my first dose - twice a day. That's where the problems started. First I have to talk to my insurance and see if I can get it cheaper - $70/month right now!!!

Next I have to figure out when I can take it in the morning. The Lyrica bottle says I can take it with any other medications as it doesn't interact. The other pill I take in the morning, Levothyroxine or synthroid, clearly states take one hour before or four hours after eating. Do not take other medications or vitamins for four hours. So now I have to call the pharmacist and get a real answer.

Finally I have to talk to my meds therapist about interactions with my other medications. This is what I have to do after most new prescriptions

Adding one more medication is not easy. I am on a lot of different things that cause different interactions. Some pain medications and some anti depressants work the same way or in different ways that can cause problems.

This is complicated..... Crap.

Friday, November 15, 2013

Gimme the paint!

This may look like a slightly disgusting picture but its a picture of a tumor as it would be inside one's body with and without the new tumor paint.
The left shows a tumor image on an MRI. The right shows the bad stuff lit up with the toxin from the Israeli Deathstalker scorpion (I'm not making this up) and shows the bad stuff - the stuff the surgeon wants to cut out. The other colors represent the good stuff.

This works on brain, breast and other tumors. I find this incredibly cool. Now surgeons go in and look at MRI and other imaging and figure out which are the good cells and which contain the cancer cooties. They would guess and use their experience. But if they took a few too many brain cells, the patient may never be the same. This is also why surgeons have problems getting clean margins because they are doing some guess work.

I love this quote:

'"In a matter of 10 years, surgeons will look back and say, 'I can't believe we used to remove (tumors) by using our eyes and our fingers and our thumbs,' " Olson says.'

Read all about it here. I find this very exciting! I want that paint before any more cancer surgeries.

Thursday, November 14, 2013

Coping or not

Sometimes life just gets very complicated, full of ups and downs, stress and more stress. I don't cope as well these days as I used to. In a spurt of optimism this summer, I told my therapist I didn't want to see her monthly but every six weeks instead.

Then every thing around me has gone to hell in a hand basket so to speak. I have some new issues with my ailments so the medical roller coaster keeps on going. I have family members who have new health issues. I volunteered for a huge project which ends next week.

Its peak craft fair season and I have a fair every other weekend. And one car had its check engine light start flashing, the other car - does it need snow tires? What about bills - too many to pay between sequester and shut down pay cuts? And, and, and, and..... Eeeekkkk!

I finally go back to see my therapist tomorrow. I think I have a list of issues to discuss with her - maybe a relatively long list even.

But I am coping. I think. I feel like I have a million overscheduled days in a row now in my life. I think I need a vacation - but that's not happening for a while. Crap.

Wednesday, November 13, 2013

There is no magic pill! Sorry!

I admit I often ask my doctors for a magic wand to make bad things go away. They tell me they cannot provide it no matter how nicely I ask. There is not a magic pill, no matter what the pharmaceutical industry wants to make us think.

In a perfect world, I would like to have a magic pill or magic wand for the following: breast cancer, thyroid cancer, rheumatoid arthritis, degenerating disk disease, and fibromyalgia. None exist. So I am whing.

The use of tamoxifen to help reduce breast cancer occurrence in high risk patients is a smart idea. It is a relatively small portion of the population and something that can't really be affected by diet, exercise or other changeable activities.

But I have a real problem with the new 'brainstorm' to give statins to millions of people who are at a risk of 7% or more of having a heart attack in the next ten years. Let me just say that somewhere around half the panel of doctors who decided this were connected with the pharmaceutical industry - they didn't vote so that is supposed to make it okay. (I would assume they did make their opinions known in pre-vote discussions.)

Doctors are now going to be told to use a new algorithm: "The equation considers age, sex, total and HDL cholesterol, systolic blood pressure, blood pressure treatment, diabetes, and smoking." HDL cholesterol is impacted by smoking, weight and exercise or lack of it. Systolic blood pressure can also be impacted by the same and salt and alcohol intake.

So let's see, get off your butt, start moving, eat right, and all that stuff, or take a pill for the rest of your life and make the pharmaceutical industry rich? Hmmm.... I prefer the former option over the latter.

I am sure statins have side effects because everything will have some kind of side effect.

PS And this recommendation will impact 1/3 of Americans. The claim is they are cheap but my guess is that the insurance industry will be on the hook for a large portion of these costs.

Tuesday, November 12, 2013

Delays can cost lives

Back in early Pinktober, Good Morning America had a 'Pink' Day and had one of their staff, Amy Robach, have an on air mastectomy. Now she is told that she has breast cancer and that the mastectomy saved her life. Now that may be a bit overly dramatic but she had skipped her mammogram at age 40.

A family member, who shall remain nameless, was given a pass by their PCP for a colonoscopy at age 51 instead of age 50. At 51, they had a giant malignant polyp and they could not get clear margins, so they had a colectomy to ensure there was no more cancer. What if they had continued to skip their colonsocopies?

A new study found that young women diagnosed with breast cancer who do not have a lot of money face delays in their treatment which could lead to the higher mortality rates experienced by them.

What does this tell us? Delays are not good. It probably is not a good idea to delay testing and treatment when dealing with cancer.

PS Obviously it is not a profound kind of day for me. This was a pretty lame post.

Monday, November 11, 2013

The transfat debacle

The FDA wants to get rid of transfats because they are bad for us Americans and cause all sorts of problems. I don't have a problem with that because they are in things that either I don't eat or can be easily made without them.

I used to use margarine but decided it had too many ingredients. Now I use unsalted butter. It has one ingredient - cream. I don't buy frozen pizza, microwave popcorn, coffee creamer and all sorts of lovely prefab foods including baked goods. It helps things retain their shape and improves shelf life. I prefer things that are fresh with few ingredients.

McDonalds has gotten rid of transfats so you can safely eat their fries. Dunkin Donuts seems to have removed transfats from their donuts. I am sure other chains have done the same.

Skip the frozen pizza - either order it delivered or make your own from scratch or use the premade crust available at the deli. Microwave popcorn - a/k/a chemical popcorn - can easily be replaced by a little brown paper bag that you used to use to bring lunch to school and 1/4 cup of kernels. Fold the bag sealed and put in the microwave for 3-4 minutes. Voila its chemical free. Melt some butter separately if you really want.

My absolute favorite, horrible for me meal that I eat rarely is fried clams and scallops with onion rings and fries - my husband and I split a plate - and we get it at a place which fries everything in lard. Lard doesn't have transfats either.

My gut (haha) tell me that the place that would take the biggest hit if transfats were removed would be the frozen prepared food section of the grocery, the premade baked goods in the grocery, microwave popcorn, and the fancy creamers that go into coffee. Could we live without these? Probably fairly easily.

I am with the FDA on this one.

Sunday, November 10, 2013

When to pull the plug?

The ever so smart 'them' tell us to have the important discussions ahead of time. You know the discussions about life support, casket choices, funeral ceremonies, and all that. Those uncomfortable discussions that should not be avoided.

The young man in this video was taken off life support at his request and died shortly after. You need to watch the video to get the whole story.

I fully support this decision. He made his opinions known prior to his fall. He repeated his wishes twice to the doctors and to his family members.

I am so glad that there was no dispute, no need to call in lawyers and get a judge to sign off. This is the way that these decisions should take place - with no fanfare, no discussion - just the confirmation needed.

Saturday, November 9, 2013


Parity in health insurance is required. This week Washington announced that Mental Health a/k/a behavioral medicine would be treated the same under Healthcare Reform as physical health issues. That's good but there is still a ways to go for full parity:
  • Dental coverage - why do we have such crappy dental coverage? Its not just your teeth needing cavities or replacements but the state of your mouth and tongue and potential tumors or other health issues.
  • Eye care - why can I only get my eyes checked every two years by a limited number of providers? The doctors want me to get my eyes checked yearly but the insurance company only covers every two years.
  • Oral parity - this is when oral drugs, such as chemotherapy, are covered under the pharmacy benefit but if done as an infusion, which costs a lot more, they are covered under the medical care benefit. A patient could pay $20 for a copay for chemotherapy infusions that costs the insurance company $12,000 but $1000 for their share of an expensive chemotherapy pill.
  • Equal coverage for birth control and impotence issues.
We will not have full, equal coverage until all these are covered.

Friday, November 8, 2013

Addendum to stigmas

As Lesley commented yesterday, the same can be true about chronic problems. People just don't understand. Then they forget you still have a problem or ask why it isn't better. Chronic problems do not go away.

A good example of this is that I have lymphedema in my left arm. I used to go for acupuncture. When I started I had to fill out a big long form with all my health issues on it. We talked about all my ailments and including lymphedema and how there could be no needles on that arm.

The acupuncturist would 'forget' sometimes and go to put a needle in my left arm. The last straw for me was when she said to me 'this hasn't resolved itself yet?'.  Clearly despite her statements that she had learned about lymphedema, she had no clue.

Then I have friends who ask if I want to go on a big hiking trip as in the past - no can do. That part of my life is over. And not by choice. If I can't go hiking it doesn't mean I don't enjoy your company.

I think some people feel that their friend's chronic problems will just go away if they could just wish them away. But life isn't like that. Which is why the diagnosis and treatment was so traumatic.

I mentioned my current knee problems. Well this is a third year of problems with what is formerly known as my 'good' knee. Now I don't have a 'good' knee. I have two knees which I hope won't need replacements for a couple of decades.

If someone has a chronic ailment and can't get around and out and about as  much, they are still there. Don't ignore them. If you can't get together, pick up the damn phone and call them.

Thursday, November 7, 2013

Stigma over health issues

No one deserves any health issue. However I can say there are two types of ailments:
  1. The ones which just happen - whether a cancer diagnosis or a car accident. There is not much you can do to avoid them. You may have increased your risk by smoking or driving without a seatbelt but the stars aligned for you.
  2. The kind of ailment which is preceded with alcohol or other intoxicants and the statement along the lines of  'hey, watch this!'.
The first category there is no blame. Should be no stigma. Nothing. The patient needs to accept that it happened, and learn to cope with the treatment and resulting lifestyle changes. Some of these are harder than other. I mean a broken leg is much less significant than a cancer diagnosis or multiple sclerosis or cystic fibrosis. But there should be no blame on the patient what so ever.

The second group, I call the self inflicted ailments, that may also involve interaction with public safety officials are clearly containing some blame. It is never a good idea to try to duplicate stunt scenes from TV and movies, nor is it ever smart to do anything that has questionable legality or other such ideas. To these patients I would be happy to lay some blame on them for the self inflicted activity which preceded the ailment.

So why is there a stigma attached to so many ailments. Non smokers get lung cancer. Not all smokers get lung cancer. If someone gets lung cancer it does not automatically put them in to the self inflicted group of ailments which is wrong on so many levels. I did nothing to get my large share of medical ailments so no one should blame me.

Wednesday, November 6, 2013


I have a favorite coffee mug these days. It says "I didn't survive cancer to die of stress".
It is true. I try to avoid stress at all costs these days. Ten years ago I was working downtown with a relatively high pressure job where my boss believed yelling at people and making people cry would motivate them.  I didn't like that, nor did I like the way my commute aligned with my  new husband's - he was home an hour and a half before me. I found a new less stressful job which was shortly followed by a  highly stressful cancer diagnosis.

Since then my health has been less than ideal and I have to live with the constant stress of new medical twists and turns every week (this week is an MRI and potential knee surgery). Stress started having a way of taking over my life as I focused on each stressor.

I learned to develop some support systems through support groups, online communities, writing (my blog), therapy, exercise and more. I try to do what relaxes me. I think while I am certainly not healthier, I am happier and less stressed.

Now doctors are catching on and prescribing stress management to patients and developing stress management practices. New research shows that 60-80% of ailments are caused by or exacerbated by stress. That is a scary number. I don't feel that my health issues were caused by stress but I do know if I am having an overwhelming day of stress, my aches and pains increase.

Medical centers are looking at offering everything from counseling, nutrition, meditation, yoga, tai chi, and more to help patients get their lives in balance. Everyone could try this by themselves, give yourself a five minute time out when stress starts taking over to close your eyes and relax and clear your mind. Or take a ten minute walk. Or join a gym, start a new exercise plan. Something besides sitting there and stressing.

Tuesday, November 5, 2013

The misled consumers - courtesy of big pharma

I wish to say a big "thank you" to Johnson & Johnson and their marketing departments for misleading so many patients and nursing homes on three of their drugs. For their efforts, they will pay $2.2 billion in fines.

"The settlement involves the schizophrenia drugs Risperdal and Invega, and the heart failure drug Natrecor, the company and Attorney General Eric Holder said. 

Johnson & Johnson and two subsidiaries "lined their pockets at the expense of American taxpayers, patients and the private insurance industry," Holder said."

You think they would have learned from their $1.2 billion in fines in 2011. Oh but they got all that money from the mislead sales they did make so that they can afford these fine.

What a business model, sell things for other than what they were approved and then use the extra money you early to pay fines and legal fees. I should go work there - maybe they would pay me for not showing up!

Monday, November 4, 2013

Keeping the brain alert

Keeping your mind alert is supposed to help with memory and other effects of aging. I hae always been a fan of crosswords and sudoku. Six years ago while I was in chemo a friend told me I needed a hobby (so I would stop calling her so often to whine I think) but she meant well.

I had learned to crochet, knit, sew, and embroider back in elementary school a long time ago.  About 14 years ago I decided to ask my sister in law for help in relearning crocheting as she is very crafty. I started a baby blanket. In chemo it then made sense to try crocheting again. I made scarves for the whole family. Then I added knitting and made scarves for lots of friends. Then I kept knitting.

Now I have millions (not exactly) of scarves and cowls (infinity scarves) to sell. So I started going to craft shows to sell them (so I can buy more yarn).

Now when I go to craft shows I ended up in so much pain that I had to spend the day in bed yesterday. I do feel better but still achy. So I am keeping my brain active but my body may not be able to keep up. Anyone want to buy a scarf?

Sunday, November 3, 2013

More breakthroughs but where are the cures?

Every day the news is full of new announcements and breakthroughs. They sound promising but they never seem to solve a problem. Here's one on new drug under development which offers hope for fibromyalgia patients. Or this one on measuring hormone levels to determine which women may be at higher risk for breast cancer.

But they so rarely get through testing and end up in your pharmacy or given to you by your doctor. I'm tired of waiting.

Saturday, November 2, 2013

I was bad yesterday

No, not that bad. I didn't break any laws. But I will be recovering from yesterday into tomorrow.

Yesterday morning I went to the gym. Then I came home and got some work done. And ate Halloween candy.

Then I got mostly organized for today's craft fair (at Thornton Ferry Middle school in Merrimack, NH if you want to stop by) where I have  a table.

Then I went for a long walk with a friend. Then we brought take out pizza and salads to my parents.

I came home and had a couple of glasses of wine (and I never drink any more).

I was very bad.

Today I am stiff and sore. I am tired. I am achy. I have to get up and leave here shortly and will be on my feet most of the day. With a smile on my face. My back hurts. My feet hurt. My knee hurts. I would prefer to stay in bed all day. But I have a craft fair. And I have to get up take a shower and run around getting ready.

If I was smart yesterday I would not have gone to the gym AND gone for a walk with a friend. I would  have stayed home last night because I was tired. I just wanted to be a normal person. I should know better. Crap.

When I get home, I will lie down and maybe take a nap before dinner that my husband will cook. Tomorrow I will sleep late and take it easy all day to continue recovering. I just need to get through today first with no Halloween candy, no wine, and no whining.

Friday, November 1, 2013

Deciphering the new health care plans

Finally after years of bickering, litigation, threats, name calling, elections, fear of change, and all sorts of nastiness, we are finally at the point where Americans should be able to sign up for the new health care plans. For the icing on the cake, the morons engineers who put the site together obviously did not do their jobs and few can sign up.

Once the first sign ups occurred, we hear all about the stories of how bad the new plans are. One woman in California went on TV to complain about her new plan. She has to pay more and doesn't like her new coverage. Here's the real story. She currently has a catastrophic plan through Anthem where she pays $293/month which entitles her to a $5000 deductible, limits her out of pocket to $8500, and a $40 copay for each of the two doctor appointments she is allowed each year. Everything else is all out of pocket. The new Affordable Care Act considers this an nonconforming plan.

She was quoted a new plan for $478/month. Which she didn't like. But the real story is that is way  more than she will pay. Due to her income she is eligible to discounts. She could get a discounted plan for $333/month which has a $2000 deductible, $6350 out of pocket maximum, and as many doctor appointments as she wants with copays of $45 for primary care and $65 for specialists. At her age, 60, I think this would probably be a good fit but if its still if its more than she wants to pay there is another lower cost plan available for $194/month which allows as many doctor visits as she wants and a $5000 deductible and a $6350 out of pocket maximum.

Finally her income fluctuates and currently she would be eligible for subsidies to help pay the premiums.

If I was her I would go for one of the two plans where I can go to the doctor as many times as I need. Being limited to two covered visits per year works if you are a healthy 20 something.

A little more research might have discovered these options for her.

And a little less bias in the media might have made these options more visible.

On the other side of the coin is the story of the woman who found a plan for a premium of $1.11 per month. Yes that is one dollar and eleven cents each month.

Now that would be a pretty damn good deal. Did I say she used to pay $509 each month?

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