Room For All

Welcome to Wondercafe2!

A community where we discuss, share, and have some fun together. Join today and become a part of it!

Register Log in
You can get a photo through a photo service. It can be relatively cheap. istockphoto.com shutterstock.com
 
I should have been starting the run-in phase today, but I found out I didn't qualify. In the past, one of the blood tests used to test for HAE was normal for me. It's not actually involved in the swelling pathway, but a different one and is just a good indicator. It's very rare for someone with HAE to have this be normal, especially during an attack. Mine was normal all 4 times I had it done before getting the real diagnosis, when I was dealing with sore throats. For the screening, of course it was normal, especially since treating with the medication it should improve and I only stopped for a week so that disqualified me.
 
I was really looking forward to having a longer period before IVs. I was concerned about how I would do when there would be no prevention - the run in period and one of the 2 treatment periods. So I'm not too disappointed. Chemguy didn't like the idea to start with, so he's relieved although he tried to hide it when I told him.

I'll just hope that overall the trial is successful and I won't have to wait too long for this version of the medication before it's available to me.
 
wouldn't that be nice Chemgal, not to do the trial but to have the drug approved

From my viewpoint what you are doing with the IVs seem to be working and you are able to do more than before
 
Yeah, it has been going much better than before! The last few times haven't gone great for me, but I managed to get it going on the 2nd try today after worrying I would need help. I'm just really marked up, some of it from the ER, so having a little break sounded like a good idea.

I wasn't sure when asked if I was going to do it though, and even after saying yes, I knew there was a chance that I would just feel too miserable and would quit. The choice has just been taken away. I feel a bit disappointed, but also realize there's a good chance I'm better off for it and I was feeling a bit of anxiety about going through with it.

I think the people at the clinic were more disappointed than me! I'm hoping if the results look promising there won't be delays in approval. The US has drugs that have been approved for a while that aren't available here, or are just coming out. I'm hoping with this, as it's the same medication in a different concentration that the delay won't be there. It might save me from ever needing a port!
 
Good news - my technical helper found a source of pictures available for use - $5.00 for permission, to be renegotiated if I sell more than 5,000 books (I'd be happy with 500). It's perfect - a inukshuk against a background of northern lights. We spent a good part of the afternoon formating the cover for my book. He is going to give the entire book a look-over and then it goes to the publisher. Wow!
In the meantime, life goes on. Grandson had a cold today so he spent the time with Grampy and me. We played cribbage this morning and went over times tables and read. This afternoon he had a fever and slept with Grampy watching him and me out.
 
Seeler, I'm happy to hear you got the image you were hoping for. Pretty cheap too! :)
 
Yay, Seeler. Glad you got the picture you need. Looking forward to your book. I will buy one of the 5,000 +!
 
Remember, when I hit 5,000 I have to share my royalties. Ha ha! And then the movie comes out!
It really would make a great movie.
When I was a kid in school, Davy Crockett was all the rage, coonskin hats, coon tails, ballad, and every kid knew that Davy Crockett died at the Alamo. I wondered even then why we didn't make heros out of some of the early Canadian (or pre-Canadian) explorers. Why not ballads, books, comics, TV series about David Thompson, with his native wife, travelling through the west, mapping our country; the French voyageurs; and of course the men of the Arctic including Franklin and his crews.
 
Seeler, really happy you were able to find the photo. great stuff. Will be wonderful to hold it in your hands.
 
Seeler said:
Remember, when I hit 5,000 I have to share my royalties. Ha ha! And then the movie comes out!
It really would make a great movie.
When I was a kid in school, Davy Crockett was all the rage, coonskin hats, coon tails, ballad, and every kid knew that Davy Crockett died at the Alamo. I wondered even then why we didn't make heros out of some of the early Canadian (or pre-Canadian) explorers. Why not ballads, books, comics, TV series about David Thompson, with his native wife, travelling through the west, mapping our country; the French voyageurs; and of course the men of the Arctic including Franklin and his crews.
Click to expand...

An HBO caliber series (minus the nudity and sex, though that would probably help sell it :whistle:) called Northwest Passage. Each season tells the story of one of the early explorers of the North. Franklin, MacKenzie, Hudson, Thompson, and so on. I'll produce and Seeler can be script editor and head writer. :D Anyone with directorial experience here or do we shop it around to some big Canadian names (Egoyan strikes me as someone who might do something interesting with the material)?
 
seeelr-for the record Davds Thompson's wife was Metis. Her name was Charlotte Small. It was a true love match. He only had one wife (unlike some Euopeans who had both an European and Canadian wife). They were married in a metis ceremony, and later-many years later, when the children were baptised they also had had a church wedding. They lived with a child in Montreal in their impoverished old age, and sometimes went out to the lawn in the evening-and laid down-and watched the stars-and remembered all the trips they had taken together.
 
Tai Chi was much better yesterday than my first class. I came home in a good mood.
Today I am annoyed and frustrated with health stuff. I'm not able to get the answers I want, programs are being cancelled. Chemguy is likely in a place without cell reception. I don't know if this is a prodrome or not. Can I be pissed off with stuff without it being one?
 
Tabitha said:
seeelr-for the record Davds Thompson's wife was Metis. Her name was Charlotte Small. It was a true love match. He only had one wife (unlike some Euopeans who had both an European and Canadian wife). They were married in a metis ceremony, and later-many years later, when the children were baptised they also had had a church wedding. They lived with a child in Montreal in their impoverished old age, and sometimes went out to the lawn in the evening-and laid down-and watched the stars-and remembered all the trips they had taken together.
Click to expand...
Thanks for reminding us Tabitha. Sometimes I tend to group Metis with first nations peoples, and speak of all first nations people as one, even though there were/are many different cultures and nations in North America. Yes, it is a beautiful love story (and would make a great novel and/or movie/TV series).
 
Seeler-my large canoe-the one you paddled is named Charlotte Small-to honour her as an early explorer-- I would have named her that-truly my crew that summer was called "Charlotte's Crew" but when I went to pick up the boat-she was already named "Charlotte Small". I knew that she belonged with me. And I know Laverne Thompson-descendant of the explores-and his son Ben and have had the privilege to paddle with them.
 
Now that you mention it Tabitha, I remember that. I've always thought of Charlotte Small as a true Canadian heroine. Too bad we didn't learn about her in school.
 
Either my prodrome won't last until I have an attack (I usually fall asleep), I wasn't having one, or butter and sugar is a good cure. After looking around Montana's seemed to have the best dessert menu. Not a restaurant where I would enjoy the food, but for way too big servings of desserts that use a whole lot of butter it's where you should go! I think I may fall asleep pretty early now.
 
You must log in or register to reply here.
Back
Top