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.
Nov 11, 2019
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.
Oct 29, 2019
Brilliance at work
In recent years there has been a huge controversy about Santa Monica CA high school being full of PCBs. The result has been multiple teachers and staff have been diagnosed with thyroid cancer. Remediation has taken place in the worst areas.
Except when a brilliant group stepped in and remediated the wrong office of the school. Really? How did they manage that? To their benefit I will say the office they decontaminated was full of PCBs but it was an unused office. Not the one that is used daily.
I have been following the Santa Monica Unified School District PCB story as 3 teachers have been diagnosed with thyroid cancer and 14 more have thyroid disease which is presumed to be a result of the contamination. The elementary school I attended was recently torn down and rebuilt because of PCB contamination. And 8 years after leaving that school I was diagnosed with thyroid cancer? Coincidence? Who knows.
But brilliant idiots at work here.
Except when a brilliant group stepped in and remediated the wrong office of the school. Really? How did they manage that? To their benefit I will say the office they decontaminated was full of PCBs but it was an unused office. Not the one that is used daily.
I have been following the Santa Monica Unified School District PCB story as 3 teachers have been diagnosed with thyroid cancer and 14 more have thyroid disease which is presumed to be a result of the contamination. The elementary school I attended was recently torn down and rebuilt because of PCB contamination. And 8 years after leaving that school I was diagnosed with thyroid cancer? Coincidence? Who knows.
But brilliant idiots at work here.
Oct 28, 2019
Support Group Please!
I have been a long time fan of support groups, well only since my second cancer diagnosis. Before that, I thought they were for 'old people'. Now I do not consider myself old, but I have learned the benefits of discussing issues with your peers who understand how you feel.
I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.
I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.
Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.
I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.
There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.
And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.
Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.
I'll keep trying. But I need to get through moving first.
I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.
I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.
Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.
I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.
There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.
And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.
Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.
I'll keep trying. But I need to get through moving first.