INSOMNIACS place to talk in the wee hours

blondiex46

So cool

sas-schatzi

What's extremely weird is I'm not tired at all, I was tired all night and wishing too sleep. Now. nada.

Yes, Jazzy. That's exactly it when I'm searching. I move so fast and have so many browsers open the computer gets confused and lock's up. HAHA the computer can't keep up--cool. One time it got so confused I had to have my tech-buddies fix it.

Blondie missed you on the 1000th. How's your help working out?

sas-schatzi

Fixed the transporter link to W&F's in the topic box. It will now go to the current page.

Anything else need fixing? Kitchen sink? Toilets? Comecon? Quidditch anyone?

sas-schatzi

Smarrty Quidditch at UCLA

https://www.youtube.com/watch?v=GPnnxc1Dfm0

For anyone that doesn't know what quidditch is --it's from Harry Potter.

https://www.youtube.com/watch?v=jrrrWuIYaGU

sas-schatzi

Got these at the SPCA thrift. It was a lesson for sure.

Found the mark easily on the back Royal Norfolk. Replacements has them at 16.99 a plate. BUT further search showed them to be a Dollar Tree thing with the tag of "not to use with food". The net says it's made in China, and has a lead content. I had a long ago experience with the same tag from a company whose name I forget.

What is the point of making a dish that can't be used with food? I can't even make a bird feeder out of them. I don't want to poison the birds. It was only 3.25$ for 4 plates and two bowls. Don't understand. They are selling on Ebay at a reasonable value. I thought it was a nice find. Buggers, but love the net.

http://www.poconorecord.com/article/20071002/NEWS/710020312

This link is a good education on ceramic/china dishes. I usually buy just glass, but these were a fun color for Florida. Nice modern feel and look. The pic doesn't do them justice. Won't pitch until I finalize determination.

http://www.wthr.com/story/12465018/13-investigates-lead-in-your-dishes

Rosevalley

Sassy you don't cycle do you? I mean no sleep, super jazzed, talking up Up UP!! When you described it that's the first thing that popped into my head. Man you have energy why don't you shell some out! love the Kermit typing.

I was up until 12:55 am apliqueing braid and lace on my DD1's medieval princes dress. It's really coming out pretty cute. I sat during the infusion of herceptin today and sewed little roses onto the lace. Yikes.. lots of close work. NO infusion reaction this time, since the dose is lower 6mg/kg over an hour. No chills. We went out to eat crepes which was nice. I had my shoulder xrayed to see what is up with it. I might have bursitis, ligament issue, femara joint issues, or bone mets.. so we will see. It's sore and annoying, wakes me up sometimes. No labs since herceptin doesn't cause issues and this is just palliation. I asked for a tumor marker because I am curious. I figure it would be good to know. I thought maybe the herceptin was working since 3 weeks ago my draining was under a liter, but yesterday they pulled off 2 + and could have done more but I am limited to 2 liters. So so much for that theory. My sats are 95% despite the draining and the cancer is every where. Ascites is endstage and everything is palliative at this point... chase symptoms, intervene where you can and make the ride as comfy as it can be. I have been doing this for 6 months, 2-5 is the average with ascites before it takes you out. Blondie has blown the stats for no chemo and survival - yaya Blondie!

Gorgeous day here, sunny and started cold and got warm and beautiful this afternoon. Geez Susan I feel your frustration and pain over the intestinal stuff. It sucks. I was kind of wondering about what happened on warm and fussy when all of a sudden there was this intense focus on farm animal reproduction... egg chicken - egg chicken.. chickens and roosters.. eggs... oy!

Jazzygirl

Loverly- I don't argue on social media with anyone, but I know a lot of people that do on Facebook and think that is what they look like when they are doing it! LOL!

sas-schatzi

Rosie I started a new drug baclofen for spasms on Monday. Being worked up for MS and Stiff Person's Syndrome. If they are negative then it's just the old post polio getting worse. May get a Rheumatology consult to make sure all bases are covered.

Baclofen is not supposed to cross the blood brain barrier. Therefore, shouldn't be connected to this weird state. Now 37 hours without sleep and not tired. I'm wired to the max. All over the boards. Leg a thumping at intervals. DBF has been here three years. He's never seen me like this. The fingers are a flying on the keyboard.

I would be chit if the Baclofen is causing it b/c the spasms are better. Figures right? Chit.

Did you take the Ibrance? I know you are end-stage. But you have lasted a long time based on what you are experiencing.

Love crepes, nothing close to French food around here.

Btw you are an incredible Mom. All you have done with the kids. Girl. you are an incredible woman and so is your DH.

queenmomcat

Rockabye, Sassy, on her keyboard....

sas-schatzi

dailymed.nlm.gov

Neurospsychiatric: Confusion (1-11%), headache (4-8%), insomnia (2-7%); and rarely, euphoria, excitement, depression, hallucinations, paresthesia, muscle pain, tinnitus, slurred speech, coordination disorder, tremor, rigidity, dystonia, ataxia, blurred vision, nystagmus, strabismus, miosis, mydriasis, diplopia, dysarthria, epileptic seizure.

Went back and looked-----improved on the muscle spasms, tinnitus, muscle pain, nystagmus

Insomnia Duh........euphoria, yeah............speeding......leg(s) jumping like I'm beating a cockroach.

What's odd is it says it's metabolized by deamination (sic).

Well, it's the last of the drug. But it would have been nice to get rid of the spasms. Chit. I have some weird cytochrome450 abnormalities. Maybe more than what has been dx'd. Oh well............

My genelex drug checker based on known genetics 3A4 intermediate (5% of population) and 3A5 Rapid metabolizer(7% of the population) Not known is percent of the population that have both abnormalities.. LOL I'm rare. But this drug isn't metabolized by either route supposedly.

But my left leg dancing under the table tells me sumpin ain't right.

blondiex46

WOw sass. U need a vacation or a job or what, show down.

Thanks rosie didn't know last chemo was july 20-2014,!! Still here feeling ok. I agree u are one amazing woman x, ur kids r so lucky.

Rosevalley

Sassy- Yep I can tell you aren't right. That sucks. They didn't sneak in steroids did they? Hopefully this soon will pass. No Ibrance.

I am so bummed! I had this little red case I put decorative roses and thread, braid and needles and I must have had it in my lap, got out of the car and dropped it. It is no where to be found. Ugh... chit. Off tomorrow to get needles and all ... at least most of the dress is done. I will try and take a picture.

sas-schatzi

Rosie,,,,,,,,,,,oh chit hand made stuff... total bummer...chit.. I think the drug is starting to wear off the legs aren't dancing as much. Almost midnight. No steroids in the drug. But povidine is, and I've had allergic skin reactions to betadine. Total bummer b/c baclofen is the total drug of choice. When I saw povidine in the monograph it was????? why would povidine be put in a drug. They're is something I don't know. The left leg has stopped hopping. The spasms are starting too return. Always something.

Blondie Hugs it was a drug ...a drug and it was a learning experience.......chit drugs suck..............

sas-schatzi

Blondie, There was an article that said that people with terminal illness lived longer when on oxygen...............it was early this year . It was months before we met.

sas-schatzi

What pissed me off, when I read the article which was in standard news, was if that was true--- Why not offer oxygen to those that want it to prolong life. By the time something enters standard news, it's old in medical news by an undetermined amount of time.

Loveroflife

Ms. Sas, fyi

http://www.sciencedirect.com/science/article/pii/0...

susan3

wow sas..hope you sleep a very restful peaceful sleep when it finally happens

Queenie, can't wait to see a picture. Sorry it's everywhere...but happy you have passed expectations. Hope you are feeling best you can, I know that's so important to many of us.

I am 2 years passed what they thought I would do. Only God knows. And I am ok with that

It's almost 3 here. I don't want to do a sas.......please let me sleep . I don't work tomorrow so it really doesn't matter when I fall asleep I guess. Of course it might matter to my dog if I sleep in to late. To bad they can't let themselves out. Lol

Jazzygirl

Good morning ladies- Stage IV sisters are the bravest women I know. Rosie is amazing, Blondie too. You all inspire me, entertain me too.

Chevyboy

You guys, we need an intervention here with SASS! I mean she is saying all these words, and I don't think they belong in that sequence.... either that or we all have to take and do all the stuff SHE is doing, so we can understand all this.

I'm thinkin' she is hyperactive, and drinking tons of Red Bulls, and drinking an over-load of Starbucks, and running around the block repeatedly! And she won't stop till the neighbors call the cops on this poor woman! Sass, you need supervision.... I'm going to come out there and throw a blanket over you, and hug you until you slow down a tad!

I'm sure that all you said makes sense, but Lord only knows, I am just boggled! Spook! YOU are closer, YOU go see what you can do.... Take her some milk-toast. That's what my Mom used to give us when we were feeling puny.....

She will probably CRASH.... and we won't hear from her for WEEKS! I'm crossing my fingers on this one.... Love you Sass

Spookiesmom

Too late Chevy. I saw a UFO go by last night, looked like SAS.

Rosevalley

Hahaa! A blond retired nurse circling the moon in search of internet and better med explanations for all! I have an image to get my mind around. Spookie that's hilarious.. it is a problem being that wired and unable to come down. Hope Sassy gets it figured out and gets some zzzz's.

Well I had Xrays yesterday and got the results this morning...before 9am?? I am in a dream, since when does anything get done that fast? Yay. Well the shoulder pain is bone mets (humerus) and I will see a radiation oncologist and hopefully get it zapped! Have some relief! I was worried it would be bursitis or inflammation and I can't take steroids because of the Pleurx catheter that drains the ascites. (Increase risk of peritonitis, infection.) Also the tumor marker is holding steady 627 for 3 months.. so that's why I am still here. Femara is just doing a little and maybe the herceptin will hold it..for a while. Amazing. Increasing the prilosec too, cause the ascites build up increased GERD and 20mg doesn't cut the heartburn, 40mg might. So it pays to tell somebody what is bugging you.

Off to the fabric store to replace my sewing needles and thimble and lace... ugh. I will finsh this dress today because DD1 has an ARC Halloween dance Saturday! Be well! Susan take care of yourself, Queenie too! Hugs to any of you that need one- (((((Hugs)))))

queenmomcat

Rose: (makes sympathetic noise halfway between sob and laughter) What a rabbit hole we've all fallen down, that someone can be glad (for certain values of glad!) that it's bone mets rather than bursitis. Yes, I'm doing better emotionally and physically--thank you for asking. Hugs all 'round on a daily basis might not be such a bad idea.

Chevyboy

Oh Rosie.... I'm just going to pretend I didn't read your last post.... and we will go on as if nothing has changed.... just that you have to do something ELSE to get you back on your feet! Just go on sewing.... that makes you happy...

And Queenly! Yes, we all need to just circle the wagons, go camping, sit by the camp-fire, and toast marshmallows.... And sing! Just big hugs for everyone....xoxoxo

Smaarty

group hugs for Susan, rose, Patty (where are youuuuuu), queen i.e., and any body else that feels the need.

Or if your in a mood, maybe this kind.?!

Chevyboy

https://www.facebook.com/boji/videos/1015333510940...

For Jazzy!

Jazzygirl

Chevy- I have seen that video before. Also saw someone here play one recently too.

I hope to be going to Cuba for a week next spring. I expect there will be steel drums everywhere!

Chevyboy

https://www.facebook.com/mynurseface?pnref=story

Rosevalley

Queenie/Chevy remember I have had wide spread bone mets since 2012 - probably 2010 had anyone bothered to look. I have never gotten the bone mets to go to sleep entirely and they have raised their heads several times. I am not upset or surprised. There are many folks on the bone mets thread who have had them for years, decades even. Just depends what the little cancer bas*ards do! Oh and how much you are willing to tolerate the meds.. there is that. So those of you on the non-mets side (stay there - that's an order) don't fret and scare yourself half to pieces if you get bone mets. Not the end of the world.

Just found out an older couple we have known and kept in close contact with for 15 years, the woman has had a serious anneurysm. I just love this woman and admire her life style, principles, faith, social work- in short she and her husband are the best of the best. The world is truly a brighter better place because they have been in it. I am sad that this has happened. I am hoping for a recovery and that she gets reunited with her DH. She always cheers me on telling me how stong and up beat I am... even when I am wilty and anything but.. They live a simple life on a small farm, bring us organic vegies and fruit, email as to our welfare and just to say "Hi", have holiday get togethers for everyone they know. They are my role models of how to live in the present, be loving and be spiritually connected to everything. Sigh, life is hard. Bad things happen to good people and I suppose that is the existential question we all face. Why is that? Just like that poster about "what ever doesn't kill you makes you stronger.... I should be able to bench press a Buick!" I want to make a poster to cheer her on as she recovers in the hospital. Soon as I finish the dress.

Group Hugs are a good idea.

Enerva

Lol I hope sass got some rest .

I don't know what can we do to help sass slow down ha ha ha

Mission impossible

queenmomcat

Rose: I hope this comes out sounding right (not offensive, not that ghastly saccharine shmaltzy chit) but a) I will do my best to not cross over into mets, or why I was at least reasonably happy with my decision to be 'aggressive' with straight DCIS....but I promise to live life to the fullest I can, now and as long as I can and b) (shyly) reading of the ladies (and more than a few gentlemen) who are carrying on with life after they developed mets have served as a bit of hope for me that I can do same, should mets happen to me.

Hoping Sass is snoozing soundly!