Wednesday, April 23, 2014

You can call me a wimp

Last night I got together with two friends - one of whom I haven't seen in over 30 years. We were laughing about the fact that when we last got together we were too young to drink in a bar legally. The other friend is one who I have kept in touch with pretty much all through the years. We both have RA but her's is much more under control than mine, or maybe my fibro and back pains make me more complicated.

We caught up on life and loves over the decades. My RA friend's husband is dealing with stage IV colon cancer and is in clinical trials because there is nothing much else left. Based on my other friend's reaction to that news, which was surprised, supportive, and dismayed, I was unsure about sharing all my health news. I said my health is horrible but I'm still here. I skipped the cancer parts.

Why was I hesitant? Because once burned, twice shy. I have been burned too many times but old friends who run from the word cancer. We already have plans to get together again so I'll wait and decide later.

But in the meantime, you can call me a wimp.

Tuesday, April 22, 2014

A stupid idea in my opinion

So would you wear a breast cancer sensing bra? Or even add a smart device to your bra that would be an early warning for breast cancer? I think this is stupid.

The premise is that self exam and mammogram compliance is not 100% that this way your bra or a gizmo attached to it can detect breast cancer early. Hmmm.... Nope. No way.

Personally I wouldn't wear one if you paid me. I think it plays to the insecurities of all women who are scared they might develop breast cancer.

The developers of this gizmo have raised $560,000. It has the CE mark so they will start selling them in Singapore. This brainstorm  is because the Singapore government gave away 10,000 mammograms but only 30% were used so they feel the need is there. So are women in Singapore who didn't bother to get a free mammogram going to wear a gizmo on their bra? I am not so sure.

It still needs to get through FDA trials here and will take a few years but I won't be buying one. Sorry. I think this is an idea that had good intentions, but not going anywhere.

Monday, April 21, 2014

Its Boston Strong Day

Here outside of Boston, it is Patriots Day, Boston Marathon Day, and one year since the explosions last spring. In the past year, the city and surrounding suburbs have gone throug a good deal of trauma where entire communities were told to shelter in place as the bombers were hunted. It was a very traumatic time.

Due to the explosions, hundreds of people lost their limbs - legs and arms - and lost their hearing or other permanent injuries. Four people were killed, three by the explosions, one shot by the bombers. A fifth fatality was announced last week as a police officer died while working out as a result of injuries sustained last year.

Today it is a perfect running day for the 118th Boston Marathon. It will start in the mid 40s and end around 60, with blue sky and lots of sunshine and a little sea breeze. I hope it is not marred by more terrorists.

Also it is Patriots Day where we celebrate the 239th anniversary of the start of the American Revolution. There will be celebration and reenactments of the first battles. These patriots show us we are still proud of our country and if we can keep the British at bay, we can also keep the terrorists away.

Its Boston Strong Day around here. We should all be proud.

Sunday, April 20, 2014

Sad phone call

This morning I had a call from a friend who is in my breast cancer circle, N. She called because another friend from the same circle, B, is in the hospital and being moved home in hospice care. We all knew this was coming. B has been slowly going down hill since being diagnosed with metastases in early 2013. It is sad.

We talked about another friend who died of breast cancer last year. At the time B told N that something about she knew she was next. The downside of having a network of breast cancer friends there are some who go to stage IV at and then eventually they slowly go. 

I know a lot of women who have breast, or another type of, cancer. They all understand what happens with cancer and its progression. Some I know in person, like B and N, others I may have met a time or too, like J who is one year out from a stage IV diagnosis after 15 years clean since her original diagnosis, and others who I only know online. However closely I know them or at what distance, we know these calls and emails happen.

It was a sad phone call this morning. I hope to visit B soon. N will tell me after she sees her today when she would be up for a visit. It is a sad situation which I know will be repeated again and again.It is sad but it is also part of the circle of life.

Saturday, April 19, 2014


The goal of most medical ailments is either stability or remission, where the ailment isn't getting worse or is actually improving. It is kind of a happy place where you almost get to feel normal again. But we know you can't go home again so normal is a relative term.

However, I had the opportunity to speak with the nurse at Accordant care yesterday. She is provided through my health insurance and is available for my support whenever I want. It has been a while since we did catch up so we had to review a lot. At the end of the conversation she said "you seem to be doing pretty well these days". I had to stop and think. But yes I am.

I mean other than my evil 9 day stomach flu, I haven't been hobbling around and my body has mostly cooperated when things that I wanted to do. I haven't tried to run a marathon or anything but I have been able to do most of the things I want and not end up in pain in bed for a few days. This is good. This means that both my fibromyalgia and RA are behaving themselves which means I can behave myself less and do more of the things I like to do.

All my other ailments, that cancer crap, seems to be behaving themselves as well.

Now I am not running a marathon, as I said, but I might want to climb a small mountain or something. Or maybe I'll settle for a big hill. Or even a long walk.

Friday, April 18, 2014

Marketing to the patients

I know pharmaceutical companies are trying to market direct to companies through their ads on TV which include the low voiced list of possible side effects and the single page ads in magazines followed by two pages of fine print. We have all see them. Now I am seeing something different.

Yesterday I received an email inviting me to a webinar fun by Pfizer on one of their new medications for RA:

"Exploring Rheumatoid Arthritis – A Live Studio Broadcast Event

Join us on Thursday, May 8, 2014.

If you’re one of the hundreds of thousands of adults living with moderate to severe rheumatoid arthritis, Pfizer is hosting the first live event designed to explore ways you can help treat your RA.
You will of course learn more about XELJANZ, first in a new class of oral treatment for RA.
Xeljanz is a prescription medicine called a Janus kinase (JAK) inhibitor. XELJANZ is used to treat adults with moderately to severely active rheumatoid arthritis in whom methotrexate did not work well. It is not known if XELJANZ is safe and effective in people with hepatitis B or C. XELJANZ is not for people with severe liver problems. It is not known if XELJANZ is safe and effective in children.
We’ll also listen to personal RA stories from patients being treated with XELJANZ, explore ways to change the conversation with your healthcare provider, and take a more active role in letting your healthcare provider know what's important to you.
May 8, 2014, could be an exciting opportunity to learn about rheumatoid arthritis and XELJANZ. Register for a live event or an online program now!"

Hmmm.... I thought. I am still thinking.They are promoting it as an educational event which of course will include information on Xeljanz. Do I want to attend? I am not sure. I would be happy to learn more about RA but not sure if I am interested in learning about a new medication.

And do I have moderate to severely active RA? And my methotrexate is working as far as I can tell. But its an interesting marketing tactic.

Thursday, April 17, 2014

Blood test for breast cancer

I find this exciting news. A new blood test has been developed which can show if breast cancer has spread and if it is responding to treatment.

It seems silly in this day and age that we can only find out if breast cancer, and many other cancers, have spread by waiting for symptoms and looking for signs in imaging tests. We have to wait for it to show up and cause problems. Doesn't that sound archaic? Get some leeches too...

Medical advances have come a long way in recent years. An operating room resembles a space ship cockpit in some ways. There are robotics and little head sets and all sorts of things. But we still have to wait for symptoms of cancer....

Wednesday, April 16, 2014


So what does self management mean to you? In terms of your health conditions, if any? Last fall I took part in a survey on this very subject. I don't recall the survey itself but I was sent an email telling me that I did so I guess its true.

It was an Open Research Exchange by Patients Like Me. The survey was called "Perceived Medical Condition Self-Management Scale". They asked patients with a range of long term conditions - from RA to Crohn's and diabetes.

The questions covered topics from how often you take medications vs. how often you forget and not running out of pills before getting a refill. I was glad to see a lot of us are human and occasionally forget to take them.

Two take-aways for me are:
  • Self management hinges on being knowledgeable about your disease and being your own self advocate.
  • It also involves not just the physical aspects of the disease but the mental aspects as a coping mechanism.
Some interesting concepts here, worthy of some thought.

Tuesday, April 15, 2014

Some lessons to learn

We can learn some lessons here. In the US we are busy being annoyed with the new healthcare system or happy to use it. But we have it and have to learn to live with it or legislate it into something else.

I did not know this but Germany has a very similar health care system with the same issues - trying to reduce costs. We are busy thinking we are doing something new but we aren't. Except for a few differences, it already exists pretty much.

I am not saying the German system is perfect. But if you read about it, there are some key similarities.

My point is that while we are trying to reinvent the wheel we can learn from others who have already done so.

Monday, April 14, 2014

My goal this week is to go to work

In the past two weeks I have worked 12.5 hours. I usually work 15-18 hours/week so you can say I am a tad bit 'behind'. My job isn't the kind where I have these huge looming deadlines but one where I have a consistent pile of projects that I keep digging away to keep under control. So now all my projects are behind.

When I went out the door on Friday (and I NEVER work on Fridays - this gives you an idea of how far behind I am), I said to my boss, instead of telling him when I would be in next, that my goal was to go to work this week. He laughed. But it is very true.

I am going to work today on a Monday. I almost never work Mondays. My preferred work week is Tuesday, Wednesday and Thursday, from 8-2. A nice 18 hour work week. It gives me a four day weekend.

This weekend was a two day weekend. I hate two day weekends. I don't get enough rest. So today I am going to work for about four hours and then to the gym. I will be home around 2 I hope. Its supposed to be a beautiful spring day and I want to get out and enjoy it.

But I have to go to work this week.

I do have a secondary goal. I do not want to go to a medical facility this week. I have been driving both my parents to their appointments - my sister has been helping too. I have been at a medical facility approximately 3-4 times each week for the past month or so. This is between driving them and visiting my father. This has contributed to work rescheduling and working on Mondays and Fridays as well.

I need a break  from medical facilities.My brother is visiting this week. His role is that of chauffeur and deliverer to all medical appointments. My sister needs to get some work done on her car and this is her chance as well. Next week we will return to driving them after our break. I might even be caught up at work by then.

Sunday, April 13, 2014

Pain tolerance

Or am I a whiner? Recently I have taken both my parents to doctor appointments. I have actually not just driven them but actually talked to their doctors with them and about them. I have now know their blood pressure and all that and heard them answer the questions are you safe at home (yes) and what is your pain level today.

I have learned that my father doesn't have pain which makes sense because he has pneumonia. My mother has pain which has been a 6 since her vertebroplasty to fix a crushed vertebra, before then it was an 8 or 9. She also has rheumatoid arthritis and a bad back - with three other previously crushed vetebrae. This is the part that makes me think.

I also have rheumatoid, fibromyalgia, degenerating disks in my back, and lymphedema in my arm which sometimes likes to act up. When I go to the doctor, I say my pain level is usually around a 4, on a good day, it might even be a 2. Sometimes its a 6 or 7, and occasionally flares higher.

I know its just a number but am a whiner? I have more heavy duty pain drugs than my mother. Do I have them because I said my pain numbers were higher because I am a wimp?

When they ask you the question at the doctors office it is completely subjective. And my pain is fickle. Sometimes its there, and then its gone. Sometimes I feel fine and then I sit in a bad chair in the waiting room and I can barely move when I try to stand.

I recently read an article on WebMD on pain tolerance. "Pain tolerance is influenced by people's emotions, bodies, and lifestyles... Biological factors -- including genetics, injuries such as spinal cord damage, and chronic diseases such as diabetes that cause nerve damage -- also shape how we interpret pain...."

I know I need to lose weight which will help with pain tolerance and the pain itself. But the two people who contributed to my genetics seem to have a better handle on pain itself. Maybe they just gave me the wimpy genes.

Saturday, April 12, 2014

That took a while

I missed April Fool's Day this year because I slept through it. I had a stomach flu. Then I felt a tiny bit better. Then I started running a temperature up to 102.5. Then I stayed in bed for two days. Then I went to the doctor - that was on Monday. The verdict was I had a stomach flu that took me days to recover from.

The doctor took blood work and did a urine test to make sure I didn't develop anything else while recovering. Because of my immune system with RA and being on methotrexate, my body takes a really LONG time to recover from anything.

I didn't start feeling like myself and getting my appetite back until April 10. That would  be 9 days of being sick, having no energy or appetite and feeling like crap.

I am supposed to work 15-18 hours/week. I have worked a total of 12.5 hours in the past two weeks. When I left work on Friday, I said my goal for the coming week is to actually come to work.

I lead such an exciting life. And I'm blogging about it. And you are reading about it! I think I need something more exciting to write about.

Friday, April 11, 2014

I'm taxing my brain here

These Internet hackers have to stop! They are taxing my brain! The latest is the heartbleed virus or bug or whatever it is that is forcing all of us to change our Facebook, Google (which includes Blogger, Google plus, Youtube and all sorts of other places), Yahoo, and Wikipedia among others. This is very annoying.

To reset passwords, its not as easy these days as logging in and going to account settings and bingo you are done. First they want you to remember your old password - I have no idea. I set up everything so the computer remembers it for me. Then you need to come up with a secure password which meets their criteria of enough characters, but not too many, with capitalization, numbers, and 'special characters'. Sometimes they insist on sending you a text to verify you really are you. And the new password can't be anything you have used before.

Then you need to go around and update all your devices where you use these accounts. My laptop, tablet, nook, and phone to start.

Finally you need to remember the new password. Do you have a secure system for saving your passwords? Do you keep it in an unsecured document on your computer? Do you keep it in a bunch of little cards where they are written down and scribbled updates? Do you hide it in your address book?

I have no brain. So when the world converted to the digital age from the analog one. I kept my Rolodex. It contains a few addresses that I haven't transferred and my passwords. I feel this is a very secure system. If a burglar breaks in they have to decipher my handwriting and figure out which website each belongs to. I feel this is very secure. But it has its drawbacks.

I have to remember to update it. And that doesn't always happen. I have to walk over to it and update the information. I know that recently I opened a new credit card and set up an online account but I didn't write down my log in information. I am a loser. I'll have to remember it to pay my bill, or just reset it this month when I pay.... Just like I did last month.... And the month before...

But all of this is taxing my brain. I have no brain. This is a known fact. I can't remember shit. If you tell me something today, I can guarantee I won't remember it tomorrow. I have to go write down my new passwords now before I forget and my brain is overtaxed for the day.

Thursday, April 10, 2014

Compassionate Use of Medications

We have all seen the horror stories in the news 'My child will die with out this medication' or join Susie's Army on facebook to lobby the company to allow her to get their new drug to save her life. They seem like a good idea at the outset but not always.

This is called compassionate use of medications which is often allowed by the FDA and provided for by drug companies as they bring new drugs to the market. A drug isn't quite ready but the patient might actually benefit from it. It would be wonderful if the drug companies and the FDA could okay every request but it doesn't quite work that way.

First of all the FDA approval apparently is not the issue in many of these cases. The problem often comes from the companies themselves. If a company is getting a drug ready for market, they make enough of what they need for the next step in their clinical trials and allow for a little extra for these cases or whatever reason.

So they simply might not have any more doses to give out without going back into production - which can be VERY expensive. Think of making cupcakes for 24 people. All of a sudden you need 25 so you have to start all over again for a single cup cake. A lot of effort for a single cup cake.

Second of all, social media may not be a big help at all. Social media has created 'patient's armys' full of well intentioned people who do things like threaten the lives of the pharmaceutical executives. That doesn't exact endear the patients to the pharmaceutical companies.

This is a growing problem. New drugs seem like they are the solution for the patient but they still are not completely tested. Could they lead to more problems for the patient down the road?

There is lots more to this. Go read this article on Drugs for the Dying and see a few stories up close.

Wednesday, April 9, 2014

Medical advances come at a cost

We hear about these great new advances in medicine that are finally released on the market. Maybe its a new drug, a new test, a new device. It doesn't really matter. It is hailed as progress. But progress often comes at a cost - we are slowly learning.

When any medical advance comes with a price tag, the question is then who pays? It comes from one of two places - the patient's pocket through a higher payment or through the insurers pocket which really means all of us pay for it.

So new diabetes pumps were introduced that offer more features, blah, blah, blah. The medical device marketing companies promote them heavily to patients. Each one costs $2500 and has a planned obsolescence every three years. Insurance companies will replace them every four years.

Diabetes is not an inexpensive disease. Patients with insurance spend more than $4000 annually even with insurance. Another $20,000 plus is covered by insurance (or the rest of us). This is called progress.

What kills me about this in an age where recycle/reuse has become more and more important, why are companies introducing something that has a planned obsolescence in three years? Wouldn't it be better to create something that might be upgradable and would last ten years? Thus reducing costs for all of us.

So every time we hear about a new medical device, tests, medication or whatever, we need to ask ourselves - what is the cost? Being covered by insurance is not the right answer.

The real answer should be: the per patient cost per dose/year of coverage is $X so we can see the real cost. Transparency should be required for all new advances and all new developments in the pipeline should have a plan for end patient cost that is justifiable and medical devices should focus on long term use instead of planned obsolescence.

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