This morning I was reading Kaylin's blog over at Cancer is Hilarious. She has had all sorts of cancers before the age 30 (4 diagnoses I believe) and now is faced with a recurrence that looks like will do her in sooner as opposed to later. She has a dilemma. She wrote:
"Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left?"
My comment back to her is to skip the proverbial bucket list and go find her happy place to live out her life - on the beach, in the mountains, visiting friends, what ever works for her. But my question for all of you is if you were given this kind of diagnosis, what would you do? Not a bucket list, but how would you make yourself happiest if you were given a short time to experience it?
Personally I find the idea of a bucket list a bit of an avoidance mode - you focus on doing the little things that you want to do but are skipping the big picture that you are dying. I keep changing my mind. Would I want to live on the beach or in a cabin in the mountains? Would I watch sunrises or sunsets? Would I continue to seek medical care or go the palliative route to be more comfortable? (Probably palliative.) My funeral by the way will be a kick ass event where everyone has fun and not a lot of tears. And the guest list will be huge.
Dec 2, 2019
Nov 28, 2019
So I wasn't that smart
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.
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 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.