I admit it. I wasn't that smart. My husband gave me a hard time too. I probably deserved that but I did get him to cook dinner.
What did I do? Something bad to my knee again. So at the end of July, I fell and my knee bent sideways. I ended up at the doctor who took x-rays and ended up at the knee doctor who said nothing but sent me for PT and gave me a knee brace. I have been going to PT but stopped wearing my knee brace last week because its just too hot and uncomfortable and my knee has been feeling better.
Yesterday I was out on our side porch trying to move stuff around and pushed things sideways with my foot. DAMN. That made my knee bend sideways again. And its swollen and hurts again this morning.
So I wasn't that smart. I am going to skip the gym today and maybe wear my knee brace again (if I can find it). Damn. But I'm not going back to the doctor. And it was healing so nicely. Triple damn.
At least I can easily blame myself for this instead of being a politician and blaming the other party.
Nov 28, 2019
Nov 26, 2019
Get braced for Pinktober.
Please watch this video before you bite into your crispy KFC that arrived in a pink bucket.
Nov 25, 2019
Prescriptions and regulations and confusion
You might have guessed I take a few prescriptions these days. Actually I have a whole pile. Every weekend I sit down and fill our pill boxes for the week. My husband has one prescription and vitamins. I have a lot more.
I get my prescriptions from three places - the local pharmacy, the insurance company's mail order pharmacy, and the insurance company's specialty pharmacy. I got promoted to the specialty pharmacy this year for some reason. Its not that they really charge more, they just like to make my life more complicated.
What really annoys me about prescription medications are the stupid rules. The latest new rule is that I couldn't just call my pain management doctor for a refill on my break through pain meds (because the new cats hid the other bottle when they 'explored' the shelf in my closet), they had to make sure I had an upcoming appointment with the doctor. They even called me twice to make sure. (Then I explained how the cats hid my prescription which caused me to think that I had run out when I hadn't.)
The other rule that annoys me is that because of the 'opioid' crisis (which I recognize is a real and growing) problem, pharmacies want patients to have used up almost all their prescription before providing a refill. I know that pain medication use can lead to opioid abuse but not everyone.
I am picky about my prescription use. I use one of those lovely box a day pill box for years and have to take pills at three different times during the day (on an empty stomach, after eating, and before bed). If I was really good I would take some pills in the middle of the day as well but since I NEVER remember, that is not going to happen any time soon.
I also think about how often I take certain prescriptions which are prescribed 'as needed'. If I think I am taking them too often, I will take a minute to think how often I am taking them and why and if I need a doctor visit for a potential issue.
I feel I can manage my prescriptions myself and don't think I need any more rules to help me manage them. And about those prices? Well that's another story.
I get my prescriptions from three places - the local pharmacy, the insurance company's mail order pharmacy, and the insurance company's specialty pharmacy. I got promoted to the specialty pharmacy this year for some reason. Its not that they really charge more, they just like to make my life more complicated.
What really annoys me about prescription medications are the stupid rules. The latest new rule is that I couldn't just call my pain management doctor for a refill on my break through pain meds (because the new cats hid the other bottle when they 'explored' the shelf in my closet), they had to make sure I had an upcoming appointment with the doctor. They even called me twice to make sure. (Then I explained how the cats hid my prescription which caused me to think that I had run out when I hadn't.)
The other rule that annoys me is that because of the 'opioid' crisis (which I recognize is a real and growing) problem, pharmacies want patients to have used up almost all their prescription before providing a refill. I know that pain medication use can lead to opioid abuse but not everyone.
I am picky about my prescription use. I use one of those lovely box a day pill box for years and have to take pills at three different times during the day (on an empty stomach, after eating, and before bed). If I was really good I would take some pills in the middle of the day as well but since I NEVER remember, that is not going to happen any time soon.
I also think about how often I take certain prescriptions which are prescribed 'as needed'. If I think I am taking them too often, I will take a minute to think how often I am taking them and why and if I need a doctor visit for a potential issue.
I feel I can manage my prescriptions myself and don't think I need any more rules to help me manage them. And about those prices? Well that's another story.
Nov 21, 2019
Crowdfunding
So crowdfunding is a great concept. It helped get a friend's son injured in Thailand home in a first class seat when he was too injured to sit in a regular seat. It helped numerous independent movies get started. It can raise funds to help a family displaced by fire or other disaster.
But what about crowdfunding medical device design and start up? I would never have thought of that. I prefer my crowd funding to go to individuals and not to companies, especially overseas companies which makes me feel there is little or no recourse to get my money back or new product.
What I find a tad scary is companies are using crowd funding to fund the design and meet FDA approval requirements. So even if you think the concept is awesome, why are you prepaying for something that may never happen - and may end up with the 'As Seen on TV' label.
But now it seems companies are crowdfunding their new medical devices. Maybe it may make them get to market sooner but it doesn't speak to the company's financial stability. If you give them money to get off the ground, how are they going to continue to be solvent as the product develops? And what if they need to make multiple modifications to get approval? Will they continue to crowdfund? Go back and ask everyone for more money?
I kind of get the heebeejeebees on this one.
But what about crowdfunding medical device design and start up? I would never have thought of that. I prefer my crowd funding to go to individuals and not to companies, especially overseas companies which makes me feel there is little or no recourse to get my money back or new product.
What I find a tad scary is companies are using crowd funding to fund the design and meet FDA approval requirements. So even if you think the concept is awesome, why are you prepaying for something that may never happen - and may end up with the 'As Seen on TV' label.
But now it seems companies are crowdfunding their new medical devices. Maybe it may make them get to market sooner but it doesn't speak to the company's financial stability. If you give them money to get off the ground, how are they going to continue to be solvent as the product develops? And what if they need to make multiple modifications to get approval? Will they continue to crowdfund? Go back and ask everyone for more money?
I kind of get the heebeejeebees on this one.
Nov 19, 2019
The Wrong Approach to Pricing
Here is an example of the wrong approach to pricing medications. That really fancy expensive Hepatitis C drug, Sovaldi, is $1,000 per pill and $84,000 for the course of treatment and the price is justified because it saves on the cost of a liver transplant down the road and long term medical costs for the patient. WRONG IDEA!
It has now been revealed that the poor manufacturer, Gilead Sciences, which justified that price on the above reason, grossed $12.4 billion last year for the sales of Sovaldi alone. Sorry Gilead, I have absolutely no sympathy for you because of the revenue generated in the first year.
Yes, I understand the argument that the expensive drugs are justified because of the resulting reduced treatment costs for the patient in the long term and that the costs of and time to developing drugs is high and many possibilities are dumped after years of work. And that these drugs are developed for smaller and smaller potential patient markets for rarer ailments. But $12.4 billion? I think you got your money back and should cut the price significantly, maybe 1/10th of the current price.
So here is my proposal for new drug pricing: Look at your development costs of that drug that made it to market and the costs of the other drugs that eventually lead to the new drug but were dumped on the way and then price it so that your costs are recouped in five years, not one. And completely forget about the patient's long term cost savings in health costs. That is none of your business. Don't you remember HIPPA? Patient health issues are not your problem. You are providing a product that helps recover from it, just like an aspirin would relieve a headache.
Here's an example. Your current pricing method would allow restaurants to charge $3 for the tasty but bad for your juicy, fatty steak or prime rib and $80 for the healthy side salad because of the diner's potential long term health problems from eating the steak and ensuing cholesterol and other ailment costs.
The current pricing model leads to insurance companies deciding who should receive these new medications instead of doctors deciding what is best for their patients - which is the way medicine should be practiced.
Okay, this is all my opinion, to which I am entitled, but I really think pharma companies are doing it wrong.
It has now been revealed that the poor manufacturer, Gilead Sciences, which justified that price on the above reason, grossed $12.4 billion last year for the sales of Sovaldi alone. Sorry Gilead, I have absolutely no sympathy for you because of the revenue generated in the first year.
Yes, I understand the argument that the expensive drugs are justified because of the resulting reduced treatment costs for the patient in the long term and that the costs of and time to developing drugs is high and many possibilities are dumped after years of work. And that these drugs are developed for smaller and smaller potential patient markets for rarer ailments. But $12.4 billion? I think you got your money back and should cut the price significantly, maybe 1/10th of the current price.
So here is my proposal for new drug pricing: Look at your development costs of that drug that made it to market and the costs of the other drugs that eventually lead to the new drug but were dumped on the way and then price it so that your costs are recouped in five years, not one. And completely forget about the patient's long term cost savings in health costs. That is none of your business. Don't you remember HIPPA? Patient health issues are not your problem. You are providing a product that helps recover from it, just like an aspirin would relieve a headache.
Here's an example. Your current pricing method would allow restaurants to charge $3 for the tasty but bad for your juicy, fatty steak or prime rib and $80 for the healthy side salad because of the diner's potential long term health problems from eating the steak and ensuing cholesterol and other ailment costs.
The current pricing model leads to insurance companies deciding who should receive these new medications instead of doctors deciding what is best for their patients - which is the way medicine should be practiced.
Okay, this is all my opinion, to which I am entitled, but I really think pharma companies are doing it wrong.
Nov 18, 2019
Mutation Tracking
(I forgot to blog yesterday. Feel free to blame chemo brain, fibro fog or whatever.)
I just learned about some new research which has lead to the use of mutation tracking in the blood of patients previously treated for breast cancer. They look for DNA mutations to detection recurrence months before anything would be detectable through scans.
This makes a lot of sense to me. Why can't cancer be detected in DNA or some other way long before it can be found in a scan? Wouldn't it be wonderful to just go for an annual blood test or something that told you if you had cancer developing? Not to get ahead of myself but I am all for this.
I like this kind of progress. It actually seems that doctors are beginning to use it.
I just learned about some new research which has lead to the use of mutation tracking in the blood of patients previously treated for breast cancer. They look for DNA mutations to detection recurrence months before anything would be detectable through scans.
This makes a lot of sense to me. Why can't cancer be detected in DNA or some other way long before it can be found in a scan? Wouldn't it be wonderful to just go for an annual blood test or something that told you if you had cancer developing? Not to get ahead of myself but I am all for this.
I like this kind of progress. It actually seems that doctors are beginning to use it.
Nov 12, 2019
Deep thoughts in the middle of the night
Insomnia, partly caused by fibromyalgia which gives me fatigue and insomnia, causes deep thoughts in the middle of the night. Sometimes I actually remember these thoughts to ponder them further.
So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.
Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might have less joint pains than before.
Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.
However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.
Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.
Maybe I'll get a good night's sleep tonight.
So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.
Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might have less joint pains than before.
Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.
However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.
Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.
Maybe I'll get a good night's sleep tonight.
Nov 11, 2019
A little too personal for me
Now big pharma has another 'bright idea'. They want to use fitbits in clinical trials to get more details on the impact of the medication and if it is working. However that wouldn't work for me. So it would be another way I would be excluded from potential clinical trials.
I am never eligible for clinical trials now anyway. I have too many ailments to be considered. It would be very difficult to tell the impact of a new medication because I have so many others.
Also, I can't wear fit bits. I cant put anything on my left arm because of lymphedema. This means no watches, no bracelets, and only my wedding ring, when my arm is feeling okay. And a fitbit? Absolutely not. I have problems wearing anything on my right arm because of my tennis elbow/bad wrist/everything else that is going on. No watches, bracelets either (I carry my phone to use instead of a watch).
This article talks about a 'fitbit' that would work as an adhesive patch. I am allergic to so many things these days. Last week's pain patch left a raised area on my chest from the adhesive even though I have been using anti itch lotion to help heal it. I am probably not the only person with multiple medical issues who would have issues when wearing one of these.
Finally, I think a fitbit is a bit intrusive. Its my body and I am not sure how comfortable I feel with someone monitoring my body from afar. I would want to be the one monitoring the results and then forwarding them to the pharma company.
So a 'bright' idea by someone who is healthy.It might be easier for them, but not necessarily easier for the patients.
I am never eligible for clinical trials now anyway. I have too many ailments to be considered. It would be very difficult to tell the impact of a new medication because I have so many others.
Also, I can't wear fit bits. I cant put anything on my left arm because of lymphedema. This means no watches, no bracelets, and only my wedding ring, when my arm is feeling okay. And a fitbit? Absolutely not. I have problems wearing anything on my right arm because of my tennis elbow/bad wrist/everything else that is going on. No watches, bracelets either (I carry my phone to use instead of a watch).
This article talks about a 'fitbit' that would work as an adhesive patch. I am allergic to so many things these days. Last week's pain patch left a raised area on my chest from the adhesive even though I have been using anti itch lotion to help heal it. I am probably not the only person with multiple medical issues who would have issues when wearing one of these.
Finally, I think a fitbit is a bit intrusive. Its my body and I am not sure how comfortable I feel with someone monitoring my body from afar. I would want to be the one monitoring the results and then forwarding them to the pharma company.
So a 'bright' idea by someone who is healthy.It might be easier for them, but not necessarily easier for the patients.
Nov 5, 2019
When all else fails
Go to the beach.
Yes that is my plan for the day, or at least the morning. I could be doing a thousand other things, packing, moving stuff, grocery shopping, cleaning up, and many more. I could even have gone to work. But I am opting to go to the beach.
Why you ask? Because I want to and I can. And there is a limit to what I can do on a given day. And its a birthday present to myself. Yes today is my birthday (and I am 37 again if you must know).
Back in my 20s I worked for a company which gave all full time employees a paid floating holiday to take on the birthday. Since then, I have always avoided working on my birthday. And today's weather forecast is for an upper 80s perfect summer day and going to the beach is recommended. So I am taking their advice.
I will contemplate life as I gaze out at the ocean. That is my prescription for life at its best.
As my health goes down my appreciation for living longer improves and incentivizes me to stop and 'smell the roses' so to speak.
Yes that is my plan for the day, or at least the morning. I could be doing a thousand other things, packing, moving stuff, grocery shopping, cleaning up, and many more. I could even have gone to work. But I am opting to go to the beach.
Why you ask? Because I want to and I can. And there is a limit to what I can do on a given day. And its a birthday present to myself. Yes today is my birthday (and I am 37 again if you must know).
Back in my 20s I worked for a company which gave all full time employees a paid floating holiday to take on the birthday. Since then, I have always avoided working on my birthday. And today's weather forecast is for an upper 80s perfect summer day and going to the beach is recommended. So I am taking their advice.
I will contemplate life as I gaze out at the ocean. That is my prescription for life at its best.
As my health goes down my appreciation for living longer improves and incentivizes me to stop and 'smell the roses' so to speak.
Nov 4, 2019
What if...
What if we just said f*ck it all and pretended were healthy? We might need to take our meds but what if we just went back to the way we were when we were healthy? I could go skiing, hiking, travel more, be thinner, and, most importantly, be happier.
Last night a friend was going to call me to chat and I fell asleep before she called (just after 8pm). Then of course I was up in the middle of the night thinking more deep thoughts, while feeling all my aches and pains, of course.
So what if all of us with multiple ailments said 'I'm sick of being sick and am going to be healthy again and do all the things we want.' I would love to go hiking again. I climbed the Grand Canyon once so I'm good there but it might be nice to hike more in the Sierra Nevadas or Rockies where I haven't done much hiking. An adventure trip to Scandinavia sounds like a lot of fun as well. Or just stay up late enough to have a social life? Is this asking too much?
Right now my body would protest but I am tired of listening to it and want to say 'f*ck it all' and run away and join the circus.
All of us unhealthy people have inner healthy (skinny and younger) people trying to get out. I want to let that person out and have fun again.
Last night a friend was going to call me to chat and I fell asleep before she called (just after 8pm). Then of course I was up in the middle of the night thinking more deep thoughts, while feeling all my aches and pains, of course.
So what if all of us with multiple ailments said 'I'm sick of being sick and am going to be healthy again and do all the things we want.' I would love to go hiking again. I climbed the Grand Canyon once so I'm good there but it might be nice to hike more in the Sierra Nevadas or Rockies where I haven't done much hiking. An adventure trip to Scandinavia sounds like a lot of fun as well. Or just stay up late enough to have a social life? Is this asking too much?
Right now my body would protest but I am tired of listening to it and want to say 'f*ck it all' and run away and join the circus.
All of us unhealthy people have inner healthy (skinny and younger) people trying to get out. I want to let that person out and have fun again.