INSOMNIACS place to talk in the wee hours

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited November 2015

    I suspected that about you Rose....stubborn.

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited November 2015

    Oh Cubbie. First,

    image

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited November 2015

    Cubbie, what treatment plan do they have for you? Tears came out of the blue for me about 4 weeks after MX.

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  • Cubbie2015
    Cubbie2015 Member Posts: 875
    edited November 2015

    Thank you, Rose. I'm not currently taking anything - chemo is not in the plan due to low range Oncotype, and I don't start estrogen blockers until after the first of the year. I have to have either more surgery or radiation first, don't know which yet. You'd think I'd be a bit more relaxed with the Oncotype news, but I'm just as tense as ever. Another woman I know is getting test results tomorrow, and I think that is part of the problem. I'm scared for her, I'm scared for me, and I'm sad this happened to all of us.

    My family doc did prescribe lorazepam for sleep, but I've never even opened it. I'd rather be tired.

    Thanks for the sheep, Loverly. Maybe this is all to be expected at this point in healing.

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited November 2015

    Try to get some rest. It's ok to take the lorazepam. It will help with the racing thoughts and relaxes you. Sleep is important for healing. Maybe try half of a tablet first. Hang in there Good night and hopefully, no cancer dreams and only sweet dreams.

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited November 2015

    I also read where wine is considered okay! Maybe not as much as my UNCLE drank in the old days, or maybe not that home-made wine DH's Grandpa made..... He squashed up his Concord Grapes, and then added sugar, and maybe yeast, (but grapes do have their own natural yeast on them) and then he set that crock by the wood stove, to let it ferment, until it was "ready"...

    "Ready" meant if you drink this it would blow your socks off, and send you out in the streets willing to beat the chit out of anyone that walked by. Of course the younger folk would pay nary a mind to this, and found it "fun" to drink with Grandpa.... Usually winding up with staying there all night.... on the floor.... and no-one cared.

    I made my own wine a few times! Just because there were all these GRAPES growing out back! So the FIRST time I made it, I followed directions. And it was GOOD! Siphoning the wine from one jar into the bottles was the best fun! But we finally gave it away... Way too STRONG! Grandpa loved it.

    Hope you guys get some sleep!

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited November 2015

    Upon doing research, trying to find a crock of fermenting wine by a wood stove, I found this........ It's long, but really funny... I thought.

    http://musingsfromaworkaholic.com/2014/10/14/wine-...




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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited November 2015

    Oh never mind... I've been surfing silly stuff, and you would be AMAZED at what you can find... most of it isn't worth passing on.... Ha!

    image

    And Rhubarb! You can make wine out of Rhubarb, or even Dandelions!

    So when you gals get up this morning, go out and pick you a bunch of Dandelions, and make some wine!

    image

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  • Simplicity
    Simplicity Member Posts: 747
    edited November 2015

    Cubbie, I never took pills before this either, but I do take a lorazepam at night to help sleep. And sometimes during the days when I just need to relax. I am just a month ahead of you on the surgery. Tears at random here too. I think the randomness will be around for a while. This chit changes you.

    Wow Chevy, that is so cool that you two have known each other so long!! So many memories! I am glad she is feeling better and hope her body follows suit.

    Lol-Beautiful dog. I have a daschund mix named Mitzi, but she is a lot smaller than your Mitzi.

    I have some dandelion home made jelly in my fridge a friend gave me. Delicious!

    Great sign Mags!

    Hope all have a great day!

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited November 2015

    Cubbie- it sounds like a lot is hitting you now. So much happens so fast after dx, you get dragged through the tests and into surgery pretty quickly. There is no time to process anything. Honestly sister, it may all be setting in now. I am sorry you are hurting, we understand your tears.

    My BS gave me some meds to sleep too. Take them as you need to. It is okay to get some help around this. Like other sisters here, you are still in treatment and the whole thing is totally scary. I am glad to hear your oncotype was low and no chemo (same here), but it sounds like you might need some more treatment.

    Hugs sister, we are here for you.

    I am very grateful there is more open conversation about dementia than when my father got diagnosed back in 1983. He was in his early 60s and I was in grad school. Trust me, no one in my peer group really even knew what that was, nor did they have any parents with it. It was a very socially isolating time for our family, but after I moved back near my parents, I went to an Alsheimers support group which REALLY helped me to know how to help my dad.

    Rose- glad you enjoyed the poetry! The poet laureate does such a wonderful job articulating things. She read some other poems to that were so good. Lots more on her on YouTube if you are interested. Jessica Helen Lopez in New Mexico. And we have the most incredible skies here.

    Mema- I love wine and I won't give up drinking, I just limit it per my MO. Couple glasses a week max. I know there are benefits to wine. Everything in moderation or even more moderation these days, right?

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited November 2015

    OWLIES, morning, you've been busy. LOL. I have to do split screen to keep it straight. :)

    Spookie, I avoid the worry on weather by not listening. Schatzi tells me about bad weather by her behavior. When she tries to lead me to the closet or under the table, I turn the news on and check the sky. Schatzi can be as much as an hour ahead of a storm. Then you are my alerting system for faraway storms. Works perfectly girlfriend :)

    Jwooooo guess we missed you, Bummed. If you do another quick flyin think of Spookie and I. Were fine with short couple hour visits.

    Loverly, head is improving, but not healed/fixed yet. PCP thinks it's my neck(very bad neck for decades). She wanted me to try the Baclofen again at much lower dose. I took 5 mg last night and 5 mg this morning when I noticed the spasms getting worse and the head hurting more. I posted before her palm pilot source said 5mg starting dose, but the original script was written for 10mg one to two every 4-6 hours. Standard daily dosing for normal folks is 60-80 mg, way higher than my 20 mg once a day. We will see what happens...........Is that your backyard? How is Mitsy doing?

    Jazzy, her reading is wonderful. So, soothing. Hope you post on the jazz & poetry thread too :)

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited November 2015

    Chevy, thanks for sharing your life story with Theresa. She is so like family to you. Hugs.

    Mags. on the post exertion malaise. Never heard that phrase before, but it's a good descriptive phrase. It may have been coined recently and hasn't reached general usage yet. This link is to Medline Plus. It covers everything A_Z about malaise. Fatigue and malaise often accompany one another. Post exertion fatigue has been identified with post polios for several decades.

    https://www.nlm.nih.gov/medlineplus/ency/article/003089.htm

    For you and me, MS(you) and post polio(me), we are classic for malaise/fatigue after activity. We just get tuckered out if we do to much. With normal folks they recover with rest. We recover much more slowly. AND if we stress it too much, we may not get back to the level we were at before. Pacing ourselves is very important to maintain what we have.

    As we age are musculoskeletal systems are not aging like normal folks. Bummer, but true. Trying to maintain an exersize and work schedules that helps us maintain our highest level of function is what we should strive for. I've studied post polio(PP), superficial standard knowledge re MS.

    When PP was formally recognized in 1980 by Dr. Halstead. At the National Rehabilitation Hospital in Wash, D.C., he and his colleagues identified the differences between how PP's may deteriorate if the do too much. Prior to that the thought was "just do more and you will get better". Even today physicians/nurses/physical therapists have that attitude, unless they have taken time to learn about PP and other neuromuscular disorders in more depth than basic school.

    With PP's the most has been written about post exertion fatigue. The little research that has been done points towards using modified cardio training. Modified to not stress us too much, yet give us the benefits of some cardiovascular strengthening. Modified strength training with light weights can be guided by a physical therapist if you can find one schooled in understanding your needs. This being 2015, things may have improved. My last experience with a physical therapist in 2011 was good, but I had worked with him on the nursing floor in years past, and thought him head and shoulders above the other therapists.

    I have found swimming is my go to exercise, and walking. I'm retired so work is no longer an issue. 12 hour shifts were my nemesis. My legs would give out. The extreme was when I would need to be taken to my car in a wheelchair. A joke among the staff was, it was a bad day for them when they started walking like me by the end of their shift.

    So, even if you can't find anything directly about post exertion fatigue as in studies, breaking apart the words is easy enough. Suggest you look at post polio fatigue. All the concepts would apply to MS.

    That's why I get a work up every decade or so. Other neurodegenerative diseases have so much in common with PP. If you put PP, MS and Stiff Person Syndrome(SPS) side by side the s/s's are very similar. MS and SPS have drugs that help. PP doesn't. By getting a work up, I'm not missing something treatable by assuming it's PP.

    For you the Arimedex adds a whole layer of problems. The AI's are such poison. Having a neurodegenerative problem then add an AI on top of it. Sheesh. Not suggesting at all that you quit the AI, but I did. I've experienced my whole life protecting myself from PP. I made a quality of Life choice to stop AI's. I was 62-63. 2 1/2 years of the three wreaked havoc with my body. Also, b/c my CYP3A4 is abnormal, I was effectively on twice the recommended dose when I was taking them. My CYP3A4 wasn't tested till 2014. It wasn't identified by science as an abnormal allele until 2011. I could have been tested then, but it slipped by my radar until late 2013.

    Did any of this help?

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited November 2015

    LOverly, YAY the baclofen is doing wonders for my TMJ. It did last night and the previous doses. Hope I don't get into the insomnia. Amazing what a relaxed jaw feels like. :):):)

    Mema heard that on the news today. Trying to follow the breadcrumb trail. The study was originally published in 2013. I found the abstract, but not the full study. This is an article about the study written when the study was published. Nicely written

    http://www.reading.ac.uk/news-and-events/releases/PR503596.aspx

    My first question when I heard it on the news was 1. who funded the study? Now it's 2. why is it being publisized now when the study is 2 years old?. Somethings happened to cause it to get wide press coverage now. Could be that another study has been published duplicating the original results. I'll post if I find anything.

    In the short term what I have learned is, it's due to phenolic acid in the champagne. BUT don't react to this research to heavily until I read the whole study, as the bolded portion makes me question if this was a mouse study. Emphasis in bold is mine.

    "Dr. David Vauzour, the researcher on the study, added: "in the near future we will be looking to translate these findings into humans. This has been achieved successfully with other polyphenol-rich foods, such as blueberry and cocoa, and we predict similar outcomes for moderate Champagne intake on cognition in humans."

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited November 2015

    Rats not mice. Still following breadcrumbs

    THis is the link to an abbreviated abstract

    http://online.liebertpub.com/doi/abs/10.1089/ars.2012.5142

    To view the whole study, it's 59.0$ for two hours. Not gonna do that, but not giving up either...........

    Found a metanalysis study published in 2014 by the same lead author of the study in 2013. Not uncommon for researchers to change from pure research to analysis of published works and publish again. Not sure if they're is a name for it, but it doesn't bode well for pure applied research. In the republishing process the info can start to be accepted as real when the premise hasn't been proven.

    In the case of this metanalysis study it still has been applied to people as to whether champagnes phenolic compounds forestall cognitive or cardiovascular decline.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited November 2015

    Still following breadcrumbs, but found this while trailing. It's hot of the publishing press. Expect to hear that coffee helps to prevent Type 2 diabetes

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0142421

    Immensely unreadable as it's a study, not an article about the study where a knowledgeable person put's the info into lay language.

    Oddly enough, never saw the word Caffeic Acid before the above study. Went on the champagne trail again. Found a chart that broke down all the phenolic compounds in champagne, Caffeic is a phenolic

    Chit lost a post:

    Found a metanalysis study from 2014 by three of the authors from the 2013 study. It's repackaged study with the conclusion that it has to be proven in humans.

    http://www.wineecoreports.com/upload/internet/CORONA_SPENCER_VAUZOUR_Impact-of-Champagne-Wine-Consumption-on-Vascular-and-Cognitive-Functions.pdf


    Still tracking to figure out why the Champagne thing is in today's news(11/9/15)


    Snagged it. News release from the Sun( likely in other Uk papers too). It clearly states that it's research in rats. They are going to be starting a (Phase1) clinical trial that will last three years.

    Problem b/c other media reporters have reported it as being true, people are going to start drinking champagne and promulgating it's value. It may end up being true, but today it isn't. Look for the completed study and publication results in about +- 9 years.

    We may see a retraction, but the damage is already done

    http://www.thesun.co.uk/sol/homepage/features/6734201/Exciting-research-shows-champagne-could-prevent-dementia.html

    I imagine those folks in Champagne, France are dancing in the wine vats.

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  • magdalene51
    magdalene51 Member Posts: 2,214
    edited November 2015
    Sassy, all that is very helpful. I haven't heard anything back either from the neuro or PCP on any of the tests. Not stressing too much about it. Tonight is cancer support group, so I'm conserving energy for that. Amazing how doing one little thing can put me out of commission for days. Beatmon has invited me to go water walking with her, and I am going to try that.

    But first, I have two amusing stories for you, since we are into stories now. First is about the sign I posted. Glad you all enjoyed it, but it wasn't so funny when I first found it. Cousin and I had been bugging DH to go to the doctor for weeks last May, as we could see him deteriorating before our eyes. It was frustrating and heartbreaking at the same time. On that fateful day, I was looking at Facebook and ran across that sign. I downloaded it and texted it to my Missouri friend, who, with her hubby, had been worrying too. As I hit send on the text message, there was a crash down the hall. Cousin and I ran to see, and found DH had fallen and hit his head. That was the beginning of three days in the hospital and the subsequent dx of liver disease. He is doing well now, or at least better, but life is never the same when you've seen your rock crumble in front of your eyes.

    Second story relates to dementia. Years ago, before we had Krispy Kreme donuts in our area, they were a special treat for us when we would visit DH's family in Indiana. One day we had picked up his elderly aunt and were driving around Indianapolis as DH loved to do, seeing his old haunts from growing up there. We decided to find a KK shop and pick up some donuts. Aunt Myrt was in the back seat. She kept pointing out the Kroger's markets to us as we passed them. Knowing she had dementia, and that she would repeat things she'd said just minutes before, we weren't really paying attention. We went on with our drive, and eventually met other family members for dinner. We were relating the happenings of the day, including Aunt Myrt's ramblings about Kroger's. DH's brother started laughing and told us, they closed down all the KK shops and they only sell them in Kroger's now!

    You want stories? I got thousands of stories.
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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited November 2015

    Mags too too funny about Aunt Myrtle

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited November 2015

    Okay finished tracking the report on Champagne. See previous post. Great lesson RE: our news media. Be careful what you read and believe is true

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited November 2015

    Cubbie - along with the Lorazepam get some Tension Tamer or Sleepytime teas. Good stuff. Your local grocer should have them. Celestial Seasonings. I need to get my Sleepytime out but I also like the Gingerbread Spice they put out for the holidays - herbal also.

    Sassy - I've never heard of Stiff Person's Syndrome. Glad you are feeling somewhat better. I think I'm tired of going places but this week has more stuff to do. Car oil change/inspection. Go into next town to get some tailoring I left and drop off another skirt to be shortened - how tall do they think we are??? I could make 1/2 blouse from what she's going to have to whack off. Church meeting Thurs. night. May go Friday into county seat to pay property taxes. Former hospice co-worker says Fridays good day for her to be in office so maybe we can have lunch. Then Sat. Mexican Food bunch going to one of my fav places.

    Resveratrol is the polyphenol found in red wine. The one that was all the rage for heart disease prevention. And yup research being done for dementia prevention. I guess a polyphenol is a polyphenol. Coffee and tea and I would suppose cocoa/chocolate too. Eat more chocolate, forget the eatmore chicken lol.

    http://ajcn.nutrition.org/content/79/5/727.full

    I will freely admit I did not read this so anyone can shoot this messenger if they want. My brain is too muddled today to read much scholarly stuff but Mr. Google does great and my fingers can do the walking. But alas no mention of dementia and only ref. to Alzheimers says this article was referenced. (Neat trick - use control F - will bring up a discussion box on bottom L at least on mine it does - and you can search article for terms without reading entire thing - greatest thing ever)

    Sassy - wink wink maybe somebody has excess champagne to sell OR it is the holidays coming up. Gives you another reason to imbibe. I'm such a cynic.

    Mags - funny Aunt Myrt story. She knew what she wanted. I thought maybe it was just the "K" in the Krogers sign.

    Chevster - loved your Theresa story. I remembered bits/pieces. Lovely to have lived in the same place. I wish I had the "sister I never had".

    Speaking of sisters (which I don't have either) - had early dinner Sat with DB, SIL, DH and our DD. Lovely time at a place called Tolberts. Named after a Terlingua chile guy. Almost deserted because the power had been off/on and they were just beginning to take customers again. I thought this was in lieu of Thanksgiving but no still have Thanksgiving invite. Have to see if DH has early shift on Black Friday. DD has to work but a token day and she's about 10 min from work. Long drive for us - MemaSue it's all the way to Allen by way of Euless to get DD. She drives from there - navigates that 114 N Airport mess much better than we do.

    And how is the vision doing now? DH had only the single vision implants. I bet the bifocal are harder to get used to.

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  • Wren44
    Wren44 Member Posts: 8,585
    edited November 2015

    If the compound is in chocolate and blueberries, I think I'll stick to those. Never liked champagne and have stopped drinking.

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited November 2015

    This was posted on my Brother's FB... We used to watch the Ralph Emery show.... and this was with Glenn Campbell, Crystal Gayle, Willie Nelson, Roy Clark, and a few others...

    My Brother is the drummer.... playing this time with the brushes....

    https://www.youtube.com/watch?v=ETkzK9pXMio

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited November 2015

    Hey, lilgoats, precisely my point. bad reporting has now influenced the sale and use of champagne. Phenolic compounds have been heavily studied, but they're is a characteristic within champagne that lifts it up above the others-----------But that's in a RAT study, not humans.

    Bad science and bad reporting piss me off. It messes with good science and good reporting.

    Glad you have been having so much fun.

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited November 2015

    Loverly- I am not stubborn about asking for directions I was rhetorically meaning "men" won't. I know my DH won't. Of course now we have smart phones and you can google directions/ map quest. I don't have a smart phone. Mags I love the story about your Aunt.. KK donuts at Krogers! Too cute. Sassy glad the headache is better. Cubbie take the ativan and get some sleep. Try it at least.

    My cat is such a weirdo. She is under my gider rocker rubbing her head along the bottom. This makes the rocker rock and as it comes forward she rubs her face against it.. like it's alive. Zoey is 12, toothless (eats just fine) and wonder about her.

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited November 2015

    Mags- I have a dementia story too, a funny one! We moved our mom from CT to CA to live near my sister in a memory impairment assisted living facility. Our mom would tell us both stories about this man who was visiting her and was a the son of a man who lived in her home town. Someone I think she went to school with. Well, my sister and I humored her and thinking "sure mom" and that she was spinning stories as she liked to do sometimes.

    One time when I was visiting and my sister was with me, we were sitting with mom in her room and in walks this middle aged man and his girlfriend, with some flowers for our mom. He introduced himself as the son of the man from our home town. My sister and I just looked at each other in stunned silence. His father had passed and he was coming back to take care of things and was bringing flowers around to some of the folks he had visited with. Our mom said to us "you never believed me about that man." We said she was right, but what were the chances? It's a small world.

    Now mom told a lot of other stories too about jobs she got while working there. She was laying new flooring for them at the assisted living place in one such story. Pretty sure that one was not true.

    Love the Krispy Kreme story! Auntie was on top of it!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited November 2015

    Thanks Sas!!

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited November 2015

    we got great news today for my grandson. He saw 2 orthopedic surgeons who both agreed to the amputation of his left leg. He is so happy to finally be able to move on. Don't know yet what day but hopefully in the next 2 weeks. He has suffered with CRPS for over 2 years now and he has an extreme case.

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited November 2015

    is it time yet to start celebrating?!

    image

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited November 2015

    Indeed, great news!!!! Do they need to get approval from insurance??

    image

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited November 2015

    Ah Rose, it all makes sense now. I'm aware that some men stubbornly won't ask for directions. I should have made use of what little neurons I have. Hehehe Thank you for showing me grace. Ok I won't call you stubborn then for that. How about maverick

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited November 2015

    Mag and Jazzy, sweet and amusing stories.

    Ms. CHEVY, you are truly blessed to have Ms. Theresa. Well, she is also blessed to have you too. Wow, that's a long time to know someone and to be in the person's life! Saw the video and recognized your brother right away. Easy, because he is the only drummer. Ha

    Destiny, ok I'm not going to erase that. Simplicity, I typed "Destiny" again. The next time I inadvertently call you that you know who I am referring to. Are you sure you want to go with Simplicity. Just kidding. I like Simplicity.Now I forget what I wanted to say to you. All this dementia talk is scary..........ok, I remember now. My younger Sis had a dadchund mixed. The dog had no mean blood in him, but was not the smartest according to my sister. I beg the differ because I had seen him open the crate to let her other dog out. He would lick you until you get annoyed with him. Unfortunately, she had to put him down because he became paralyzed from the waist down. Could not poo or poop. Poor thing was happy even toward the end.

    Cubbie, my smart phone always want autocorrect your name to Vinnie...weird huh? Did u see the discussion about reservatrol? Enjoy your dark chocolate. Just make sure you don't eat too close to bedtime. Hope you are sleeping better today.

    Ms. Sas, yay!!! How did you take it the first time and do you notice any hyperactivity with the lower dose this time? We treasure the time when our body parts do what it's supposed to do. I have to remember to be grateful all the time

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