INSOMNIACS place to talk in the wee hours
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Mommie, A charity may have so many layers of web pages that the facts can be obscured. But a web site following Charity Navigator or other charity evaluator, knows to put the facts up front or easily accessed from page one. I found Komen difficult to do too. I was seriously biased against administrative costs. The number of folks receiving 6 figure salaries, didn't seem in keeping with a charitable foundation.
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Hey MT glad you are back. They ' re has been a bit of a change
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WenchLori, Have you tried cooking the radish greens? They aren't bad. Our radishes tend to get bugs, so we grow them for greens.
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Sas, I agree with this guy. Weather Channel used to be about the weather, now it's becoming like all the other channels that run the reality tv crud. I am not a denier either, but I am a skeptic on the climate crud. It's all because Al Gore was pushing this crud while trying to make a name for himself on a global scale to distance himself from Bill Clinton.
Sun is supposed to return for the weekend and bring the warmer temps here. I told hubby we need to put the a/c's in before then otherwise it will be hard to be comfortable when we sleep.
Feeling a bit down today. It's the 7th anniversary of my older sister's passing.
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Mommy, sorry about your sister's passing. Anniversaries are the hardest/ Hugs. Please, if you are up to it. Tell us your happiest memory of her ?
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Sassy, we stayed an extra day, got back yesterday. It's Adderall, not Ritalin that I'm taking, they are 30 mg tablets, I can take up to 2 a day but usually only take one. Doesn't hop me up, just lifts the heavy fatigue. Off to nap, but your post on the previous page about Churchill reminded me of this:
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I know beating the poor horse to death. I referenced that the Obama WH through the DOJ was having the FBI look into investigating CC Deniers or skeptics. Of course, with the world brouhaha being waged in the public arena. The knowing is in the details. The Wall Street Journal last year Mar 2016 published an op-ed piece by David Rivkin. He and his co- author were making it known that they would be available to defend anyone that the "government" was trying to prosecute and persecute b/c they didn't agree with the "consensus". It's Orwellian that the government would attempt to prosecute b/c it falls under the First Amendment Right of Free Speech. I thought this very chilling at the time. Actually, scary as hell that government was trying to regulate scientific thinking. It was occurring not just in the US, but around the world.
This is the WSJ article. It will be whited out unless you have a subscription. But if you read fast you can't catch most of it
https://www.wsj.com/articles/punishing-climate-change-skeptics-1458772173
This is a youtube article with Rivkin.
https://www.youtube.com/watch?v=eBKHjjL3Ghk
Okay, I will take the poor horse to the vet and let him rest awhile.
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My favorite memory of my sister was she was my Matron of Honor when I got married. No matter how mad I was at her before that, at least we put it aside for that day and she kept our Mom out of trying to make my wedding day look like it was all about her and not me. I will never forget that and the fact that when I looked at my watch during the reception, I noticed my watch was reading a day later. When I showed it to my sister she smiled and said it was our Dad's way of showing he was there in spirit and he was happy for me.
She was so proud of me going to college and was always pleased at my grades when I would call her at the end of semester. She told me to keep going and that she was so proud of me. She also told me our Dad would be proud of me too. That more than anything made me cry.
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Oh Mommy, what a special story. I hope you didn't cry in the retelling, but thank you for sharing. So, it gives us even more reason to cheer you on in school YAY Mommy.
Hmm so one share of a most favorite moment requires a quid pro quo..........I'm caught off guard. I will have to think of the best moment with my sister. Twin. I'll think of it overnight or so........
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Mags it was Phyliss that needed the info. She was prescribed Ritalin at 8 am and 12 noon. May or may not take the 2nd dose.
You are Adderall 30mg two divided doses usually only take one.
You were the first that I heard prescribed the Adderall for day fatigue. Now she is the second i.e a drug normally used for ADD/ADHD I would have to do a search for the differences between the two drugs. Sure wish I hadn't lost my counselor to Obamacare, b/c he was a true ADD/ADHD on the drug for many years. I'm not sure if this has been an application of the drug for an extended period of time and I'm just hearing about it now. Hells bells could be a forever thing and I didn't know.
Just as a trivial pursuit observation. I had appointments over time, with my counselor from 1pm to last appointment of the day 8:30pm, but usually 5-6pm. I found it interesting observing his focus in the late hours versus earlier than say 6:30pm. We talked about it a couple of times. His focus was off in the last hours. But then we would just get howling with laugh stuff. I did however make sure I took the bit earlier appointments.
Do you feel any unusual things once the drug wears off? Phyliss isn't. But now I have to collate what you two are saying Hahahaha. Then remember it---- that's a hoot. If you see which ever doc that prescribed it, ask them when they started prescribing it for daytime fatigue. Reason this could be another suggestion to other members to explore with their docs.
Till I heard it from the two of you, hadn't heard it........I think I will stick with that
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But perhaps. MTwoman who has returned from vacation can weigh in and enlighten us. That would be so nice. Glad you are back Mtw
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Hey Sassy, you know my pcp, Charlotte, is also my friend, and she's learned to trust me on what my body's telling me. I actually first heard about using ADD/ADHD drugs for fatigue from a chronic fatigue FaceBook group, so after I finished the halaven tx I mentioned it to her and she said well let's just try it! To be honest, I don't really feel the drug taking effect or wearing off, but once I've taken it, I'm able to do more without hitting the wall. It's like it lifts the fatigue and the fog that goes with it. A couple of times when I've had lots of things to do (like last weekend) I may take one early in the morning (like 6) and a second one early afternoon. But like I said, I never actually feel them wear off. My niece and nephew were both on Adderall for ADD/ADHD (although it's questionable whether either actually had it) and my nurse friend said she had seen horrible effects in babies born to users of it, though I can't recall what exactly. Both of the kids took themselves off it in their teens with no ill effects, no withdrawal symptoms.
I'll call you tomorrow and we can solve all the rest of the world's problems.
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Heeee's Baaack tonight! Silly guy
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Oh Mags, Love you, so much......Okay what I have to do is go back to Phyliss and have her ask her doc why she suggested it.
You found it b/c of fibro, why did Phil find it? That is what I have to answer. Because two may lead to thousands. Fatigue is one of our biggest complaints.
Off label use of drugs are often found this way, word of mouth patient to doctor, doctor to doctor. Then a drug is considered "safe" as an off label use just by use, except it's never been studied. As long as adverse events aren't reported to the FDA. Mags this is actually a very big deal. I must not fall down on the pursuit of this. So bug me when you feel up to it.
Effects on babies and teens are not at question here. That would be dealing outside the scope of our discussion b/c it would be so rare.
Effects on chemo patients and those on AI's is relevant. This could be a good thing to pass on. But, also, it may be happening and we are late to the party.
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OMD Wenchi, he 's back. How much fun? Have you looked it up?
Preaching now. Google, Fb, Microsoft(Bing) twitter, Snap Chat and a couple more are censoring. One of the ways to prohibit censorship is to use a browser that doesn't censor. I use DuckDuckgo.com--duckduckgo.com. Worldwide censorship is going on. I'm not kidding. Google has been censoring since the early 2000's............I caught on to it early last year. Then googled Googles history. I was shocked.
What I perceived as the best friend of the person at a computer, I found out they were not giving the true answers. I was bummed. If any one cares to know how I figured it out. Ask. Otherwise. Google is not your way to information. Please, choose another browser.
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I teared up a bit when telling the story but not as bad as I did Sunday when I was at church attending what was the retirement service for the pastor that had been at that church. It won't be the same at church without seeing him and his wife. I dread how long it's going to be until we get a new pastor and when we do, I dread how this new pastor is going to be like doing the service.
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Mommy beautiful memory of your sister's kindness on your wedding day and her pleasure in your achievements.
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sassie, the only indications for Adderall use are ADHD and narcolepsy. Specialists (both psychiatrists and neurologists, in this case) are typically the ones (in my experience) who start to use meds off label, when someone doesn't respond to the typical meds. Then, after a time, other prescribers will begin to use these meds in the same way. The manufacturer has motivation to go through trials to prove their efficacy in other conditions, as that would extend their patent protection, but they haven't in this case, so I wouldn't just assume it is considered "safe" in our population as there is no available data. Adderall is basically an amphetamine preparation, which is a CNS stimulant (an "upper") that works through increased production of dopamine (so there is also no reason to believe that this affects ca cell production). There is addiction potential, which is why docs don't just prescribe it for anyone, but wouldn't worry with our population (most prescribing rules are suspended in cancer treatment).
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Thanks gals. Even though the pain from her loss is healing, I still feel as if it was yesterday that we lost her
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Wenchie are you sure tha raccoon isn't part cat?
Mommie, still working on a thought about twin. Weird.
Mtw, I agree that generally psychiatrist and anesthesiologist start the doc community of off label use of a drug, but how much is b/c of grassroots discussion occurs b/c patients noting that something caused a change, and their primaries gave it to the. For example, I'm taking Savella. Last time I took it I lost 30 pounds or so. The direct action was as a SNRI. s.e. weight loss. I restarted it recently to see if the same thing would occur.
Another old example, When I was on the Hot Flash Forum years ago(first 25 pages). Effexor was being given to women that had hot flashes. it was a cascade effect of women using it. There was some research, but it wasn't definitive. People here were getting it from their docs. There has been research since, but I forget it's results. It's widely accepted for HF's, but is a terrible drug for anyone to get of off.
Same with Mags and Adderal, she brought the info from her fibro board and her doc decided to let Mags try it. Did the doc look to see if it was an off label use or a approved direct use we don't know. But one of it's effects is wakefulness.
Another example, is Metformin. I did some research 2 years ago on the weight thread and metformin popped up in the research. It can lead to weight loss. My HBA1c cooperated by moving off 5.4>>5.6>>5.7>>5.9. Easy direct indication. My PCP ordered it, Iook it for a few days and something was not right and I discontinued it(memory splat). It's now 5.5 and nothing changed.
I think the most classic example is valium. It was developed as a skeletal muscle relaxer(1959). It was very soon found out that it was very good for anxiety. It became the "little Housewives" best friend in the 60's. By 1970, it had fallen in use b/c it was seen to be addicting or habituating. It was considered a bad drug. By the time I found it in 1975 hardly anyone new it was skeletal muscle relaxer. In this case it was the reverse. It's original approved use was lost. I found it in 75 when I was dealing with a severe neck problem. Even into the 2000's I still would have to explain to the nurses why our new neurosurgeon was using it for his back cases, b/c their perception was it's indication was for anxiety. Then I would go through a whole explanation.
The point being is use for off label can be found on the patient level by sharing info as it was on the fibro board ant Hot Flash Forum, and then it becomes known to docs who then talk just like we do. Eventually, if it's wide enough known a company will do a study.
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I found out through an allergic reaction that I can't take Metformin. When my primary doctor first put me on it, I had no reaction. Either late last year or earlier this year, I developed an itchy blotchy rash from it that was all over my arms, back and stomach. Told the doctor about it and they took me right off of it and put me on something else for what I was on Metformin for. I made sure it is noted on all my medical records as one of the things that causes me to have an allergic reaction
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Mommy, Glad you got an answer so quickly.
Loverly, you hoooo getting busy?
Talk about weather, cold and damp and rainy. The grass is loving it. It's turned a brilliant green.
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Loverly, I know you are at work, but. the present solution on the levothyroxine is to use a different manufacture. Timing is such I can get a lab before the new endocrine's appointment. Then get his opinion
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Just peeking in to wish everyone a goodnight's sleep as restful and cozy as Miss Pris.
Love n' hugs to all the Owlies 🦉💕
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Just popping in to say I am here. Busy doing research for our upcoming trip. Going to bed exhausted everyday. Why do I procrastinate???? Would be easier just to pay $$$ to do the tour with the cruise, but I hate to throw away hard earning money. Plus, I am cheap. So many museums I want to visit in Amsterdam, but we only have 2 days there.
Would love to comment to you each individually, but need to do a rain check.
Ok I will be quick.
Mommy, hugs. Lovely memories of your Sis.
Ms. Sas, good idea regarding trying different generic. Just make sure you stick with the same one once your number is at goal.
Welcome back Mags and MT.
Lori, such a cute little guy in the planter box. Love seeing pictures of your garden. Your plants look so happy and healthy.
Awwww Pris
❤️ Nite nite. Morning Feline.
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Sassy, he's been back every night so far. I put a few cookies in the box for him last night. From what I can find about raccoons in boxes is that they really like boxes. Here's a few pics I've come across
Too funny!!!
SURPRISE!!!
I'm having my port removed this morning. It's finally stopped hurting after almost 11 months. Why it took so long I have no idea lol
Gentle healing hugs to everyone 🤗
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Morning all!!!!
Lori, good luck with the port removal. Take it from me it will feel like Heaven when it's gone!!!! Love the Trash Panda pictures!!!!
Thanks Sas. Talking about my sister helps ease the pain of her loss a bit
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Mommy, that's very nice, that talking about her helped. If you'd like to talk about her more, that would be lovely. It's getting close to your anniversary. What's the special plan?
LOverly, you are the last person that I would think a procrastinator. Seems to me someone here has been to Amsterdam. Perhaps Sensi? Worth a shot to Pm her? OR perhaps Jwoo?
Wenchie, sounds like you have a friend for life. Funny about cats & coons and boxes. You taught me how bad possums are for horses, but that the eat ticks like crazy(? is that right). What niche in the ecosystem do raccoons fill beyond the penchant for trashing? I saw on fb yesterday referencing gardening. It showed that you could cut the tops off of certain produce and a new plant would grow out of the base. The picture shown was of a cabbage or a lettuce. I couldn't cut and paste.
After working on the PORT thread for years the "keep or get rid of port" discussion has always gone on. The common thread that I have observed is for those folks that want to get rid of their ports is that it's like graduation i.e. I'm done with it and onto the future. It's a VERY personal issue. Some feel very strongly about keeping it. I only mention it here b/c you may run into folks that will bend your ear on why you should have kept it. Analogy, when we were dx'd, folks that would tell us "stuff", like asparagus or their relative dying etc. What it comes down too, is your decision for you.
GRADUATION DAY ! Congratulations
in your pocket with the coffee and chocolate.Shep, Pris is so cute. Wish your vision was better. Miss you here.
Junie hasn't posted in awhile? She has been such a goer doing so much with Kirby. Nice.
MTw waving
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Nick update : Donnie has improved Hahaha. He's trying to be such a good example for Nick. For example, having Nick pick up after himself, Donnie is actually dropping his clothes in the clothes basket versus all around it.
Remodel. Tediously slow. Messes lot's of places. One door Donnie thought had a frame, but it doesn't. Thankfully, the manager at Home Depot trouble shot it. Frame only 19$ and is in stock. Whew!. The walk-in tub goes in on Monday the 12th. That means that 25% of the room will be done. Start of the project was approximately Feb 1st. Not sure how fast the rest will be done. Hoping for Thanksgiving. Anything sooner will be a nice surprise.
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Not much, maybe a special dinner. Hubby and I pretty low key on plans lately.
Sis was quite the prankster. She loved to pull pranks on people. Like the Christmas she got revenge on her hubby for making her go on a wild goose chase for her engagement and wedding ring he had bought her one Christmas to replace the one that had gotten damaged beyond repair one day while she was at work. She made him suffer through at least an hour and a half of a scavenger hunt through their house, my step grandparents house and my parents house just to find 2 lbs of Jelly Belly jelly beans that she had placed in several boxes and secured with all kinds of tape. She just sat there the whole time with a serene look on her face as he struggled through all the boxes and tape. Everyone else was just struggling to keep a straight face while this was going on.
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