1. Dreamed that we're on our way to visit our Australian friends—Tracey and her family. We ride in a car with two girls who seem to have the same destination. Though we're together in the same car, there's no interaction between us and the girls. It feels kind of sad and awkward.
Then one of the girls makes a remark about the music that's playing in the car. She seems to be talking to us. I respond—saying something with the attempt to be light and fun. The girls don't respond to my response.
When we arrive at our destination, I get a hug from Tracey, but it is a cold hug, and she doesn't seem very happy to see me. I get the sense that she's mad at me.
In another dream, we're making plans to visit Tracey and her family somewhere in Victoria. I'm trying to decide what days we'll go, and what we'll do when we're there. I decide and declare that I don't want to go to a lot of museums, especially if we're going to go to museums when we're in Melbourne. I think about how Jack seems to enjoy museums more when he has a friend and decide it would work better if our friends are in Melbourne when we are in Melbourne. Though I don't know if that's possible.
2, Thought the failed car conversation in the first dream represented the way I often feel in real life.
I say something to someone, and they either don't hear me or what I've said isn't interesting or funny enough.
I get this kind of blank look from people.
3. Wondered if I'm more sensitive than most other people. Or am I more boring than other people?
If I say something and I'm not heard, I feel stupid and want to retreat. If I start talking and am interrupted, I want to just give up. If I start to tell a story that's difficult and/or personal and the other person is very distracted or looks disinterested, I feel rejected.
Of course, there are exceptions to the latter situation. If I'm talking to a parent of a young child and the parent has to tend to the child, I very much understand that. I don't take offense. I do take offense if someone is very distracted by other things when I'm telling a story—especially if they're not kind enough to come back to me and say something like, I'm sorry. You were saying?
4. Read about Dick Smith on Twitter.
It sounds pretty awful. People aren't being able to use their gift certificates they have from there.
I need to read more about it.
5. Started to read an article about the situation.
The company has gone into debt.
6. Learned that the Dick Smith stores tried to sell house brand electronics rather than brand name stuff, and this caused some of the problem.
7. Found another article which talks about how the Dick Smith company heavily pushed sales of their gift cards. Now those gift cards are worthless. Understandably, people are angry and disappointed.
8. Had a depressing thought.
Sometimes I cheer myself up about most people not seeming interested in my life and opinions by remembering there are people who read my blog.
But what if no one is reading the parts of my posts that have opinions or stories about myself? What if everyone is skipping through all of that?
I know my posts are overly long and I wouldn't expect anyone to read one of my posts in its entirety. But what if ALL the personal stuff is being skipped? The thought makes me feel sad and alone.
I do know that my dad and Tim have said they do the opposite. They don't care much about the Australia stuff, and just read the personal stuff. As far as I know, though, my dad VERY rarely visits my blog.
Tim reads more often than my dad, so that's good. Plus, Tim is one of the few people in my life who is usually willing to listen to me if I want to talk. He's even kind enough to let me blab on and on about Coronation Street.
9. Amused, somewhat. Because if what I fear is true, no one will even know that I am having these doubts and insecurities.
10. Reminded myself that there have been times that other people have let me know that they've read the more personal aspects of my blog.
11. Thought of people who comment on my blog but rarely respond to anything personal. They're probably doing the opposite of what my dad and Tim do. They likely skip most of the personal stuff and only read the Australian information. I'm guessing they don't comment on the personal stuff, because they don't usually read it.
12. Started watching an episode of Scooter: Secret Agent.
13. Went to the workout room to finish watching the episode.
Then I watched an episode of Home and Away.
14. Felt myself beginning to enjoy Home and Away. I think I'm slowly bonding with the show.
On this episode, they mentioned Yabby Creek which was often mentioned in 1980's Home and Away. For some reason that connected the modern show more to the old show, for me, than Alf (Ray Meagher) and Marylyn (Emily Symons) do.
I think it's because Alf and Marylyn feel like strangers to me now. Their lives are so different from when I last saw them.
With Yabby Creek, I don't think the place is often shown. It's usually just mentioned. So there's not much different from mention of Yabby Creek in the 1980's and the mention of Yabby Creek in the 2010's.
15. Felt much better about things.
This morning I was feeling that I'm boring to people, and people don't want to hear what I have to say.
Although I think that's true sometimes, it's not true all of the time.
I think my dreams, last night, gave me those feelings.
It's really amazing to me how much my dreams effect my life. Sometimes my dreams make me like things more than I did before the dream. Sometimes my dreams cause me to fear things I never feared before. Sometimes my dreams cause me to lose love for certain people and things.
AND my dreams led me to Australia and this blog.
The good my dreams have brought me definitely outweigh the bad.
16. Went to the Tropfest website.
Today I'm going to watch a film called "Dusk".
I love dusk. That's the same as twilight, right?
17. Googled.
Lord Wiki says dusk is the darkest stage of twilight.
I think I like twilight in general—maybe not dusk specifically.
18. Started watching the film.
There are children and sand dunes.
19. Finished watching "Dusk".
I don't know what to think.
I feel I'm lacking an opinion.
A young boy and girl in the 1970's steal the clothes of a man and woman. Then they see the man and woman having sex.
The woman meets up with the boy and explains that she and her boyfriend were making love. She offers to show the boy what that is. The film cuts to another scene, and I was left wondering if this was some kind of child molestation thing.
Then the little boy offers to show the little girl what making love is, and he simply kisses her.
20. Figured the movie is a simple coming of age type thing.
21. Saw that the director of the film, Bill Allert, is the same director who made the Taxi film "Yellow".
It's sad that I didn't recognize his name immediately.
I can't remember if I learned anything about Allert. I do remember writing about "Yellow". I spent the majority of that post learning about actor who played the taxi driver—Nathan O'Keefe.
22. Saw that Elena Carapetis, the actress who played the woman in "Dusk" has been in a fair amount of things. She appeared in many episodes of season six of Heartbreak High.
23. Saw that Tuesday Stone, the art director for "Dusk" has a lot of film and television credits.
She was the assistant art director for The Water Diviner.
She was the set direction coordinator for The Chronicles of Narnia: The Voyage of the Dawn Treader.
She was the art director for the Australian bits of Oranges and Sunshine.
She was the buyer/set dresser for The Boys are Back. I imagine that might be the job I talked about recently. Maybe it's the person that buys the stuff to make up the character's homes and lives? If it's what I'm thinking it is, I think it would be a very fun job.
24. Thought it might be a fun game to play while people watching. Ask...What would this person's kitchen look like. Is it professionally decorated, or did they decorate it themselves? Maybe a combination of both? Are they the type to stick things on their refrigerator or a cork board? Do they tape up their children's' drawings? Do their tea towels match their curtains? Is the kitchen neat? Cluttered? Do they have cooking gadgets? What kind of mugs do they use?
25. Thought of a man I talked to briefly today. He collects Sorcerers of the Magic Kingdom cards. I would imagine he's somewhat neat, because he has the cards organized in an album.
I think he would have fun pop culture things in his kitchen—probably a lot would be Disney related.
I think he'd have a couple of cool mugs.
He might have a Disney attraction poster hanging on his walls.
He was alone on the bus, so there's a chance he was at Disney World alone. I can imagine him living alone and not having many personal photos in his kitchen. He might have one Christmas card photo of a cousin and her family.
26. Imagined he also has a drawing that his young niece sent him. He greatly treasures it.
27. Understood I could totally be wrong about all of this.
But that's part of the game. It's just a matter of guessing, imagining, and understanding the truth might be the opposite of what you assume.
28. Found an article about the production design of Oranges and Sunshine.
29. Saw that the article is in interview with Melinda Doring who had the role of production designer. Tuesday Stone was part of her team.
30. Read some of the article and learned that production design takes a lot of research. I imagine this is especially the case when you're doing something that's based on a true historical event.
31. Saw that Lord Wiki has an entry on Elena Carapetis, the actress from "Dusk".
She recently wrote a play called The Good Son. Before I saw that the play had it's premiere in 2015, I was thinking it might be the basis for that old Macauley Culkin and Elijah Wood movie.
32. Went to the Bakehouse Theatre website—the theater where the play was first performed.
33. Saw that the play is a Greek story about a son who feels suffocated by his mother.
I'm picturing a Norman Bates type thing, but maybe without the incest and murder.
34. Went to Elena Carapetis's Twitter.
I think her Greek heritage is very important to her. Her bio says, Actor. Playwright. Descendent of Aphrodite and Icarus.
It kind of reminds me of the period in my life where my Jewish heritage was very important to me.
I wonder if Carapetis's passion for her heritage is more long-term than mine was.
Mine lasted for about five years.
35. Saw that Carapetis' last Tweet was in response to a Tweet about women on welfare being forced to use contraception. She says, @morebento so revolting.
I don't think think any woman should be forced to use contraception, but I think most women should be encouraged to use it. I guess the exception would be women whose religion forbids it.
36. Liked what Carapetis Tweeted in regards to Peter Dutton and the witch thing...which I really didn't read about much, by the way. I did see the headlines, though.
Anyway, she Tweeted. Traditionally witches were powerful women with agency and control over their own bodies. But I don't think that's what Dutton meant.
37. Thought of how there are times that people get in trouble for using a word that some deem as being offensive but others do not.
Witches is one example. I think of witches as a positive thing—like the Charmed ones.
Godless might be another example. People might use it as an insult, but if you're an atheist? Why would it be bad?
Heathens and pagans would not be taken as insults by some people.
38. Thought that bitches and sluts can sometimes be seen as positive by some people.
A slut can be someone who is brave, experimental, and secure when it comes to sexuality.
A bitch can be a woman who has the strength to stand up for herself, others, and what she believes in.
39. Saw that Carapetis has Tweets in support of immigration, including one that says, My family came to Australia by boat with nothing. The successes of their descendants - like Dr @jcarapetis - their legacy #theluckycountry
40. Followed the Tweet link, and saw that Carapetis was referring to her cousin Jonathan Carapetis. He's a pediatrician and the director of something called Telethon Kids Institute.
41. Imagined a lot of wonderful people in the world are descendants of those who arrived on boats.
42. Realized that actually MOST people probably do come from descendants of those who arrived on boats. How else would they have crossed the ocean (Well, at least before there were planes).
Some people are descendants of asylum seekers. Others are descendants of non-refugee immigrants.
43. Went to the website for the Telethon Kids Institute.
It's some kind of children's health organization based in Perth.
I suppose they have telethons to raise money for their organization. Though don't many organizations do that? It seems kind of strange to use the word "telethon" in the name.
44. Read the vision page of Telethon Kids Institute.
They're a research organization.
I feel a little weary about that, just because I've gotten Change.org petitions regarding drug companies charging a shitload of money for their medicine.
Maybe it's just happening in the US, and not Australia. And I hope it's a rare thing and not widespread.
It's really unfair and evil, though. People donate to research charities. Helpful medicines are discovered. But then the medicines are not affordable to people who need them.
45. Hoped that the medicine that comes about from research done by the Telethon Kids Institute is affordable to families.
46. Looked at the accomplishment page of Telethon Kids Institute. It's extremely impressive. It almost seems like they're the ones who brought us most every modern medical advancement for children.
For example, they helped with the discovery of folic acid being needed to prevent Spina Bifida. That's quite big.
47. Learned from Lord Wiki that the Telethon Kids Institute was started by Fiona Stanley.
I was starting to think the website looked familar to me. I'm guessing I read about it when I did my post about Stanley. That was several years ago, though.
But still. I kind of had a vague feeling I had already read about the folic acid thing....I mean the part about the knowledge of the connection having Aussie origins. I definitely know I already knew about the importance of folic acid. I think most women who have, or plan to have children, know about the link.
48. Read the Telethon Kids Institute's page on Cystic Fibrosis.
They're doing ground-breaking work. Hopefully the years of life for people with Cystic Fibrosis will keep increasing in quantity and quality.
My mind has been in the negative regarding Cystic Fibrosis research—mostly because of that Change.org petition. But I need to remember that the lifespan of CF patients has significantly increased. Though there are cases in many medical conditions where people struggle or fail to afford the treatments that will save their lives; I think many people, of various economic means, ARE being saved.
49. Googled to try to find the Change.org petition and ended up finding an Australian petition.
It seems Australia has the same sort of problems as the US—and I'm sure most other countries do as well.
The petition is in regards to a drug called Kalydeco. It fixes the underlying problem of CF, which from what I learned in the past, has to do with the sodium chloride channel.
Side note: Cystic Fibrosis was another one of my major life obsessions.
According to the petition, Kalydeco costs patients over $300,000 a year.
Why do drugs cost so much?!
If I wasn't at Disney World and had all day to research the question, I might do so.
I wish there was a quick and easy answer, but I'm doubting that's the case.
50. Tried to get more recent news about Kalydeco, because the petition was from 2013.
Fortunately, it's good news. The Cystic Fibrosis Federation says the drug has been approved for subsidy by the government for anyone who has a certain gene.
I'm assuming the game plan is to prevent the Cystic Fibrosis symptoms from actually happening.
This is probably better news for families that are new to Cystic Fibrosis, and less promising for people who already have very damaged bodies.
51. Saw from a CFF PDF that Kalydeco is available only to patients who are six and older. That kind of surprises me. Maybe it's not seen as safe for younger children? But what if a child has a severe case, and the damage could have been prevented if she took the Kalydeco earlier?
52. Went to the Kalydeco website.
They say the medicine can be used for kids who are TWO and older.
So why is Australia waiting until kids are six to provide the medicine? Should I assume it's a financial issue?
53. Wondered about the US and Kalydeco. Is it affordable here? Is it available to children ages 2-5?
54. Found an article.
It's making me think that the Change.org thing I saw a few weeks ago was about the same drug.
It's probably a problem in multiple countries.
55. Took note of this quote from the article. In a viewpoint published online in the Journal of the American Medical Association, the doctors said drug companies have an obligation to put patient well-being on equal ground as profitability.
Amen to that!
And as someone who's a bit anti-doctor sometimes, it's nice to be reminded that doctors often care a lot about the well-being of patients and their families.
56. Felt something is very wrong in all this. I'm not an expert. But it doesn't make sense that research groups get money from foundations who get their money from donations. Then the research companies get high profits and the families of those we're supposed to be helping can't afford the medication.
People don't donate to medical research in hopes that they'll make scientists rich. They do it to improve and save lives.
I mean I don't want scientists to starve. I think it's lovely if they can have a comfortable lifestyle—even a VERY comfortable lifestyle. But if they get this lovely lifestyle at the unfair expense of those they're trying to help, that's quite evil.
Then one of the girls makes a remark about the music that's playing in the car. She seems to be talking to us. I respond—saying something with the attempt to be light and fun. The girls don't respond to my response.
When we arrive at our destination, I get a hug from Tracey, but it is a cold hug, and she doesn't seem very happy to see me. I get the sense that she's mad at me.
In another dream, we're making plans to visit Tracey and her family somewhere in Victoria. I'm trying to decide what days we'll go, and what we'll do when we're there. I decide and declare that I don't want to go to a lot of museums, especially if we're going to go to museums when we're in Melbourne. I think about how Jack seems to enjoy museums more when he has a friend and decide it would work better if our friends are in Melbourne when we are in Melbourne. Though I don't know if that's possible.
2, Thought the failed car conversation in the first dream represented the way I often feel in real life.
I say something to someone, and they either don't hear me or what I've said isn't interesting or funny enough.
I get this kind of blank look from people.
3. Wondered if I'm more sensitive than most other people. Or am I more boring than other people?
If I say something and I'm not heard, I feel stupid and want to retreat. If I start talking and am interrupted, I want to just give up. If I start to tell a story that's difficult and/or personal and the other person is very distracted or looks disinterested, I feel rejected.
Of course, there are exceptions to the latter situation. If I'm talking to a parent of a young child and the parent has to tend to the child, I very much understand that. I don't take offense. I do take offense if someone is very distracted by other things when I'm telling a story—especially if they're not kind enough to come back to me and say something like, I'm sorry. You were saying?
4. Read about Dick Smith on Twitter.
It sounds pretty awful. People aren't being able to use their gift certificates they have from there.
I need to read more about it.
5. Started to read an article about the situation.
The company has gone into debt.
6. Learned that the Dick Smith stores tried to sell house brand electronics rather than brand name stuff, and this caused some of the problem.
7. Found another article which talks about how the Dick Smith company heavily pushed sales of their gift cards. Now those gift cards are worthless. Understandably, people are angry and disappointed.
8. Had a depressing thought.
Sometimes I cheer myself up about most people not seeming interested in my life and opinions by remembering there are people who read my blog.
But what if no one is reading the parts of my posts that have opinions or stories about myself? What if everyone is skipping through all of that?
I know my posts are overly long and I wouldn't expect anyone to read one of my posts in its entirety. But what if ALL the personal stuff is being skipped? The thought makes me feel sad and alone.
I do know that my dad and Tim have said they do the opposite. They don't care much about the Australia stuff, and just read the personal stuff. As far as I know, though, my dad VERY rarely visits my blog.
Tim reads more often than my dad, so that's good. Plus, Tim is one of the few people in my life who is usually willing to listen to me if I want to talk. He's even kind enough to let me blab on and on about Coronation Street.
9. Amused, somewhat. Because if what I fear is true, no one will even know that I am having these doubts and insecurities.
10. Reminded myself that there have been times that other people have let me know that they've read the more personal aspects of my blog.
11. Thought of people who comment on my blog but rarely respond to anything personal. They're probably doing the opposite of what my dad and Tim do. They likely skip most of the personal stuff and only read the Australian information. I'm guessing they don't comment on the personal stuff, because they don't usually read it.
12. Started watching an episode of Scooter: Secret Agent.
13. Went to the workout room to finish watching the episode.
Then I watched an episode of Home and Away.
14. Felt myself beginning to enjoy Home and Away. I think I'm slowly bonding with the show.
On this episode, they mentioned Yabby Creek which was often mentioned in 1980's Home and Away. For some reason that connected the modern show more to the old show, for me, than Alf (Ray Meagher) and Marylyn (Emily Symons) do.
I think it's because Alf and Marylyn feel like strangers to me now. Their lives are so different from when I last saw them.
With Yabby Creek, I don't think the place is often shown. It's usually just mentioned. So there's not much different from mention of Yabby Creek in the 1980's and the mention of Yabby Creek in the 2010's.
15. Felt much better about things.
This morning I was feeling that I'm boring to people, and people don't want to hear what I have to say.
Although I think that's true sometimes, it's not true all of the time.
I think my dreams, last night, gave me those feelings.
It's really amazing to me how much my dreams effect my life. Sometimes my dreams make me like things more than I did before the dream. Sometimes my dreams cause me to fear things I never feared before. Sometimes my dreams cause me to lose love for certain people and things.
AND my dreams led me to Australia and this blog.
The good my dreams have brought me definitely outweigh the bad.
16. Went to the Tropfest website.
Today I'm going to watch a film called "Dusk".
I love dusk. That's the same as twilight, right?
17. Googled.
Lord Wiki says dusk is the darkest stage of twilight.
I think I like twilight in general—maybe not dusk specifically.
18. Started watching the film.
There are children and sand dunes.
19. Finished watching "Dusk".
I don't know what to think.
I feel I'm lacking an opinion.
A young boy and girl in the 1970's steal the clothes of a man and woman. Then they see the man and woman having sex.
The woman meets up with the boy and explains that she and her boyfriend were making love. She offers to show the boy what that is. The film cuts to another scene, and I was left wondering if this was some kind of child molestation thing.
Then the little boy offers to show the little girl what making love is, and he simply kisses her.
20. Figured the movie is a simple coming of age type thing.
21. Saw that the director of the film, Bill Allert, is the same director who made the Taxi film "Yellow".
It's sad that I didn't recognize his name immediately.
I can't remember if I learned anything about Allert. I do remember writing about "Yellow". I spent the majority of that post learning about actor who played the taxi driver—Nathan O'Keefe.
22. Saw that Elena Carapetis, the actress who played the woman in "Dusk" has been in a fair amount of things. She appeared in many episodes of season six of Heartbreak High.
23. Saw that Tuesday Stone, the art director for "Dusk" has a lot of film and television credits.
She was the assistant art director for The Water Diviner.
She was the set direction coordinator for The Chronicles of Narnia: The Voyage of the Dawn Treader.
She was the art director for the Australian bits of Oranges and Sunshine.
She was the buyer/set dresser for The Boys are Back. I imagine that might be the job I talked about recently. Maybe it's the person that buys the stuff to make up the character's homes and lives? If it's what I'm thinking it is, I think it would be a very fun job.
24. Thought it might be a fun game to play while people watching. Ask...What would this person's kitchen look like. Is it professionally decorated, or did they decorate it themselves? Maybe a combination of both? Are they the type to stick things on their refrigerator or a cork board? Do they tape up their children's' drawings? Do their tea towels match their curtains? Is the kitchen neat? Cluttered? Do they have cooking gadgets? What kind of mugs do they use?
25. Thought of a man I talked to briefly today. He collects Sorcerers of the Magic Kingdom cards. I would imagine he's somewhat neat, because he has the cards organized in an album.
I think he would have fun pop culture things in his kitchen—probably a lot would be Disney related.
I think he'd have a couple of cool mugs.
He might have a Disney attraction poster hanging on his walls.
He was alone on the bus, so there's a chance he was at Disney World alone. I can imagine him living alone and not having many personal photos in his kitchen. He might have one Christmas card photo of a cousin and her family.
26. Imagined he also has a drawing that his young niece sent him. He greatly treasures it.
27. Understood I could totally be wrong about all of this.
But that's part of the game. It's just a matter of guessing, imagining, and understanding the truth might be the opposite of what you assume.
28. Found an article about the production design of Oranges and Sunshine.
29. Saw that the article is in interview with Melinda Doring who had the role of production designer. Tuesday Stone was part of her team.
30. Read some of the article and learned that production design takes a lot of research. I imagine this is especially the case when you're doing something that's based on a true historical event.
31. Saw that Lord Wiki has an entry on Elena Carapetis, the actress from "Dusk".
She recently wrote a play called The Good Son. Before I saw that the play had it's premiere in 2015, I was thinking it might be the basis for that old Macauley Culkin and Elijah Wood movie.
32. Went to the Bakehouse Theatre website—the theater where the play was first performed.
33. Saw that the play is a Greek story about a son who feels suffocated by his mother.
I'm picturing a Norman Bates type thing, but maybe without the incest and murder.
34. Went to Elena Carapetis's Twitter.
I think her Greek heritage is very important to her. Her bio says, Actor. Playwright. Descendent of Aphrodite and Icarus.
It kind of reminds me of the period in my life where my Jewish heritage was very important to me.
I wonder if Carapetis's passion for her heritage is more long-term than mine was.
Mine lasted for about five years.
35. Saw that Carapetis' last Tweet was in response to a Tweet about women on welfare being forced to use contraception. She says, @morebento so revolting.
I don't think think any woman should be forced to use contraception, but I think most women should be encouraged to use it. I guess the exception would be women whose religion forbids it.
36. Liked what Carapetis Tweeted in regards to Peter Dutton and the witch thing...which I really didn't read about much, by the way. I did see the headlines, though.
Anyway, she Tweeted. Traditionally witches were powerful women with agency and control over their own bodies. But I don't think that's what Dutton meant.
37. Thought of how there are times that people get in trouble for using a word that some deem as being offensive but others do not.
Witches is one example. I think of witches as a positive thing—like the Charmed ones.
Godless might be another example. People might use it as an insult, but if you're an atheist? Why would it be bad?
Heathens and pagans would not be taken as insults by some people.
38. Thought that bitches and sluts can sometimes be seen as positive by some people.
A slut can be someone who is brave, experimental, and secure when it comes to sexuality.
A bitch can be a woman who has the strength to stand up for herself, others, and what she believes in.
39. Saw that Carapetis has Tweets in support of immigration, including one that says, My family came to Australia by boat with nothing. The successes of their descendants - like Dr @jcarapetis - their legacy #theluckycountry
40. Followed the Tweet link, and saw that Carapetis was referring to her cousin Jonathan Carapetis. He's a pediatrician and the director of something called Telethon Kids Institute.
41. Imagined a lot of wonderful people in the world are descendants of those who arrived on boats.
42. Realized that actually MOST people probably do come from descendants of those who arrived on boats. How else would they have crossed the ocean (Well, at least before there were planes).
Some people are descendants of asylum seekers. Others are descendants of non-refugee immigrants.
43. Went to the website for the Telethon Kids Institute.
It's some kind of children's health organization based in Perth.
I suppose they have telethons to raise money for their organization. Though don't many organizations do that? It seems kind of strange to use the word "telethon" in the name.
44. Read the vision page of Telethon Kids Institute.
They're a research organization.
I feel a little weary about that, just because I've gotten Change.org petitions regarding drug companies charging a shitload of money for their medicine.
Maybe it's just happening in the US, and not Australia. And I hope it's a rare thing and not widespread.
It's really unfair and evil, though. People donate to research charities. Helpful medicines are discovered. But then the medicines are not affordable to people who need them.
45. Hoped that the medicine that comes about from research done by the Telethon Kids Institute is affordable to families.
46. Looked at the accomplishment page of Telethon Kids Institute. It's extremely impressive. It almost seems like they're the ones who brought us most every modern medical advancement for children.
For example, they helped with the discovery of folic acid being needed to prevent Spina Bifida. That's quite big.
47. Learned from Lord Wiki that the Telethon Kids Institute was started by Fiona Stanley.
I was starting to think the website looked familar to me. I'm guessing I read about it when I did my post about Stanley. That was several years ago, though.
But still. I kind of had a vague feeling I had already read about the folic acid thing....I mean the part about the knowledge of the connection having Aussie origins. I definitely know I already knew about the importance of folic acid. I think most women who have, or plan to have children, know about the link.
48. Read the Telethon Kids Institute's page on Cystic Fibrosis.
They're doing ground-breaking work. Hopefully the years of life for people with Cystic Fibrosis will keep increasing in quantity and quality.
My mind has been in the negative regarding Cystic Fibrosis research—mostly because of that Change.org petition. But I need to remember that the lifespan of CF patients has significantly increased. Though there are cases in many medical conditions where people struggle or fail to afford the treatments that will save their lives; I think many people, of various economic means, ARE being saved.
49. Googled to try to find the Change.org petition and ended up finding an Australian petition.
It seems Australia has the same sort of problems as the US—and I'm sure most other countries do as well.
The petition is in regards to a drug called Kalydeco. It fixes the underlying problem of CF, which from what I learned in the past, has to do with the sodium chloride channel.
Side note: Cystic Fibrosis was another one of my major life obsessions.
According to the petition, Kalydeco costs patients over $300,000 a year.
Why do drugs cost so much?!
If I wasn't at Disney World and had all day to research the question, I might do so.
I wish there was a quick and easy answer, but I'm doubting that's the case.
50. Tried to get more recent news about Kalydeco, because the petition was from 2013.
Fortunately, it's good news. The Cystic Fibrosis Federation says the drug has been approved for subsidy by the government for anyone who has a certain gene.
I'm assuming the game plan is to prevent the Cystic Fibrosis symptoms from actually happening.
This is probably better news for families that are new to Cystic Fibrosis, and less promising for people who already have very damaged bodies.
51. Saw from a CFF PDF that Kalydeco is available only to patients who are six and older. That kind of surprises me. Maybe it's not seen as safe for younger children? But what if a child has a severe case, and the damage could have been prevented if she took the Kalydeco earlier?
52. Went to the Kalydeco website.
They say the medicine can be used for kids who are TWO and older.
So why is Australia waiting until kids are six to provide the medicine? Should I assume it's a financial issue?
53. Wondered about the US and Kalydeco. Is it affordable here? Is it available to children ages 2-5?
54. Found an article.
It's making me think that the Change.org thing I saw a few weeks ago was about the same drug.
It's probably a problem in multiple countries.
55. Took note of this quote from the article. In a viewpoint published online in the Journal of the American Medical Association, the doctors said drug companies have an obligation to put patient well-being on equal ground as profitability.
Amen to that!
And as someone who's a bit anti-doctor sometimes, it's nice to be reminded that doctors often care a lot about the well-being of patients and their families.
56. Felt something is very wrong in all this. I'm not an expert. But it doesn't make sense that research groups get money from foundations who get their money from donations. Then the research companies get high profits and the families of those we're supposed to be helping can't afford the medication.
People don't donate to medical research in hopes that they'll make scientists rich. They do it to improve and save lives.
I mean I don't want scientists to starve. I think it's lovely if they can have a comfortable lifestyle—even a VERY comfortable lifestyle. But if they get this lovely lifestyle at the unfair expense of those they're trying to help, that's quite evil.