INSOMNIACS place to talk in the wee hours

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  • Shellshine
    Shellshine Member Posts: 1,039
    edited August 2014

    Hey Owlettes,

    I'm just cutting and pasting a note I wrote on another post to say jodie doodie:

    Hey Hoolies    I just finished reading .....boy do you all have a lot going on, as usual.

    I have a rare extra day off today as the "hurricane" that turned into a tropical storm bypassed my little nook of the woods almost completely, and all of us home hospice nurses have the day off. It feels great to have an extra day to rest, relax and catch up. They say another one is headed this way in a few days, DS heads back to college on Monday so it better not mess with my boy! 

    I like hospice but I work too much - gotta fix that.

    Love youse!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited August 2014

    Shells! Good to hear from you! Stay safe!!!!!

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited August 2014

    this time, it's the right day. So happy birthday enerva. What kind of top? Can you send a pic with it on?

    image

    The movie was great. Go see it if you can. 

    I like the wig idea. And mayonaise is a good hair conditioner but you Must wash it out. 

    Got the bra, no more pants, I'll just have to make them as soon as I figure out a new pattern! 

    Gosh, I was 3 pages behind when I came back.  Susan, thanks for the feedback. Glad you are enjoying your time out.

    Positive vibs to everyone, have a fun weekend. 

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  • susan3
    susan3 Member Posts: 3,728
    edited August 2014

    those owls are laughing at us...or are they laughing with us ????

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  • Enerva
    Enerva Member Posts: 3,162
    edited August 2014

    Smarty is a summer top for when I go to cancun on vacation lol I saw it on YouTube and decided to make it here it is. 

    image

    Also a picture of some cute owls I found looking at a caterpillar 🐛 

    image

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited August 2014

    cute top. Love the owls too.

    Me after 35 lbs down and new jeans. I hope my arms tighten up, otherwise not looking bad. 5 more to go and I'm done. Starting eating food last week, we're up to 2 meals a day with 4 products. Next week 3 and 3. 

    image 

    image

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  • dutchiris
    dutchiris Member Posts: 855
    edited August 2014

    Looking good Smarty!  

    I'm up too late again.  I just wish if I'm going to be up late that I would get more accomplished.  I'm not liking the way I feel right now.  I hope I feel better when I wake up...whenever I sleep.

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited August 2014

    Dutch, hope you get to sleep soon, night

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  • Enerva
    Enerva Member Posts: 3,162
    edited August 2014

    Smarty you look great I also have two meals a day, since chemo I stopped having dinner due to my digestive system been so bad and I still have problems if I eat after 4 pm so I only have a fruit or salad for dinner. Not fun at all but ok since my appetite never got back to normal. 3:10am here lol I just woke up as usual I am still an owl :) 

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2014

    OK here I am, I fell asleep about 7PM aaarrrggg now I'm awake but not completely.

    Chevy u have a beautiful garden and I love u'r home but stay out of the hair business--that's Susan's job here, yes we used to use mayonnaise but rinsing it out was a bitch. Susan I'm lucky cuz my DD does my hair when I ask her to--but remember she wouldn't permanently dye my hair foiled purple. So she got me the stuff that washes out, she's kinda of prudish, but she does do a good job. But she just does it for friends and neighbors.

    Blueberry now I remember u yes Blueberry Buckle that caused more confusion around here too. Didn't ANYONE feed their babies blueberry buckle from Gerbers baby food??? I'm glad u reminded me now I remember u and I hope u'r here to stay well at least a while.

    Enerva this whole weekend is u'r BD weekend so don't stop celebrating, well as long as u want. And u'r top wouldn't fit my left leg, but looks adorable on u.

    Susan I'm glad u'r having some good days--enjoy

    Shellshine it's so good to hear from you. Sounds like u'r working hard and that's a hard job, but u'r doing well and that's what counts.

    Smaarty u look fabulous, and u worked hard for this too. Congratulations.

    Dutch do u feel anxious or are u feeling sick, what going on, well I hope u'r sleeping now but if not--tell us.


     

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2014

    image

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  • Enerva
    Enerva Member Posts: 3,162
    edited August 2014

    well it's 5:05 am don't think I ll get any sleep any time now lol

    image

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  • dutchiris
    dutchiris Member Posts: 855
    edited August 2014

    Cami, I was sleeping but now have been awake for about an hour.  I have some pain in places.  I'm hoping it's from pushing my scooter for a little over a mile.  It died at a stopllight  and I couldn't started it again.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited August 2014


    Good morning and Happy Saturday. It's gonna be really hot here today and that means in the house I'll stay.

    My step-mother's mother passed yesterday, she was suffering alot this last week so I know she is in a better place now. My step-mother didn't leave her side much this week, but when she went to her sister's to take a shower, that is when she passed. Everyone thinks Ruby waited to go until she was alone.

    ((hugs)) to everyone

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited August 2014

    Good Morning all, 

    Seems weird posting before Chevy....she must be at sunrise BINGO...

    DH is healing, going nuts, tired of watching the news & all the problems of the world..

    Basement still is a mess, fans everywhere...I need to get down there & clean, trash & recycle.

    Envera, you are so talented. Tells us how you ended up in Canada with your family in Venezuela?

    Looking good, Smaarty...

    Dutchie, yes it's the workout from pushing. I was so sore from hauling huge buckets of water out of the window well.

    Saw the MO yesterday. Still have low WBC, but platelets are normal...She says no worries, keep exercising & try to gain a little weight. No one has ever came close to saying that to me. 

    Love this photo

    image

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2014

    Dutch it had to be the pushing of the cycle, it's amazing u forget some times it's not as easy as it seems. I hope u feel better and

    Hole I hope u'r holding up too--it's a good sign when u'r DH is moaning about being bored. What a mess u must have--do it slowly please.

    Yea that Chevy she's probably waiting to hear us talk about her so she can throw it back at us. U know how she is.

    Well I'll be leaving soon, of course shower first, but no lotion, I'll be in the pool and zi don't want to waste any for no good reason. LOL So I'll just use my goatmilk soap.

    I hope everyone has a good weekend. I'm going to try.

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  • Pawprint
    Pawprint Member Posts: 464
    edited August 2014

    Good morning people...ugh. Went to start my car but have a dead battery. So I'm waiting for AAA, and having a second cup of coffee. 

    I love the pics that are posted, Enervas blouse, Chevy's house, Smaarty's selfie, HiO beach pic. There is a thread on here that has all pictures of peaceful scenes to contemplate. 

    Tang, sorry to hear about your step mothers mom passing. I have heard other stories of people passing when love ones step out of the room. Its good she's not suffering anymore. 

    Dutch, I hope you rest and let your sore muscles heal. 

    I'll check back later. Going out front to wait for AAA to bring my new battery. 

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2014

    Tang I knew to say smething else and I didn't----I'm sorry about the passing of u step-mom's mom, it's always sad when it happens, but sometimes like my mom the pain gets to much and they stop fighting.

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2014

    imageNow read the little print/

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  • gardengumby
    gardengumby Member Posts: 7,305
    edited August 2014

    OK, Cami, you got me.  It took three looks before I realized it was a lamp.  :)

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2014

    GG me too. LOL

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited August 2014

    hi owls. Enerva, I forgot to ask, you are a natural blond or is darker your natural color. Both look good on you!

    Dutch, I'm surprise you could push a scooter at all! My GS has one now and they're heavy. He can now stroll around the neighborhood and get some sun. We got him a new doc, the old one wouldn't respond to referral request even when they came from other departments or his case manager. So we'll see how this week goes. He has an appointment for an evaluation for SS. It seems to be moving fast, it's only been 3 months since we applied. They said it would take 3-6 months to hear back from them. If any of you have dealt with SS, would you recommend we get a lawyer now?

    Everyone try to have a good weekend. Our last music circus play is tomorrow, Brigadoon, then it's over for the season.  BBL.

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2014

    Smaarty I think if they get a hold of u soon--IDK I used no lawyer and my family is loaded with them--My Dr. applied immediately with her form and I heard within 3 weeks and that was that. Mybe IL is different or my Dr. explained very well I don't know, but I know people do use lawyers well I don't know what the going rate is too. But u will or should when they decide and if it's in your favor get back pay too. Don't quote me I'm just thinking.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2014

    Hole In One---such worries. Suggestion. All over florida b/c we have so many Blows. There are lots of groups that help each other in the aftermath. AND they do it b/c they are good neighbors so to speak. B/c they may not be a local neighbor but a community neighbor. For example, the churches and the high schools organize the kids and adults to help out for no cost. They, particularly, help us seniors. They might be a source to help. DS and his friends even would just band together to go around the neighborhoods to see who needed help. :)

    Paws, I don't quite understand it yet, but there is a serious connection between iron and thyroid metabolism. If I remember correctly you mentioned you had an absorption problem in the stomach. That would be B12. Haven't said anything before b/c figured your docs were working on it to the best of their ability.

    B12 and acid production are somehow intergal to the thyroid. Again, I don't understand the relationship yet. I bought the book and it's on it's way. I purchased it off Amazon It was about 23$. I have learned that I have had thyroid problems for years that were not associated or considered to be related to the thyroid. They were treated as something else. The more I read, the more I'm disappointed in mainstream medicine for not connecting the dots

    Spookie one of the unconnected dots is fibromyalgia. The dot goes back to the 70's when TSH became the gold standard for evaluating thyroid.

    Blessings, you too :) Not for you brain injury, but for wound healing. AND your brain is healing. I know you've mentioned weight before. It's been an issue for me in the last year b/c the weight gain started when the thyroid problem got very serious. Rapid unexplained weight gain and other symptoms. fatigue, hair loss,

    Chevy, eczema is too. What I found out the very hard way is that dx I got from the vulva bx last summer is a form of eczema. With all the the ups and downs of hormone this past six months. I developed a real problem with eczema of the vulva, to go along with the hands. NO local doc>>Derm, PCP, Endocrin local doc could make the connection. The BIGWIG doc at Moffitt did though. He clearly stated it had to do with the wide swings of hormone in the system during treatment were the direct cause. Local Endocrin when I pushed him on it the other day said no relationship and wanted to know the source. He was not happy when I told him the internet and BIGWIG doc. 

    Along time ago in Jan. I posted some lists of what the thyroid could be involved in causing. The lists included just about every disease or condition there is. As I went through this whole thyroid cancer thing and the manipulation of the meds. I became intensely aware of many things that were happening physically. As time went on I began to question the mainstream total management. I had to get kicked in the neck to be pushed into looking at it rather than depend on the docs. 

    I haven't figured out the minimum of blood work that I'm going to ask for until I read the book. The STTM web site ie very good, but in this situation I really want to have a book.

    Prior to TSH becoming the gold standard for recognition of thyroid problems docs treated patients by clinical evaluation. That means they treated the symptoms patients voiced. For 122 years before that time, patients were treated with dessicated thyroid from pigs. 

    What changed was docs started paying attention to lab values. If the labs fell into the normal range, the lab values guided their treatment. Patients voiced problems were put of to other sources or they were told it was all in their head. 

    Two huge conditions that were said to be all in the patients head for a few decades are Fibromyalgia and Chronic Fatigue Syndrome(CFS). While both have been intensively researched. They are diagnoses by exclusion.  By that I mean all other known accepted causes are ruled out.  If a source was not found and the s/s's were present a patient was labeled with a diagnosis of fibro or CFS. Research did identify Epstein Barr as a source for CFS. But many many CFS patients were negative for the virus. Both now are recognized conditions with treatment management plans now since the late 90's. But my reading identifies that they were managed by use of desscated thyroid prior to labs being available they are intricately related to the thyroid.

    Laboratory values are established by science. As time has gone on science changes the values. Basically, it is a man made value. Man tries to do the best they can through the scientific method. But sometimes they are just wrong in the long run. The values and acceptance of other values then are changed.

    My thought of the other day that thyroid resistance could be theoretically possible. It is true. It's been known for quite sometime. The Reverse T3 is a test that can measure the resistance at the cell wall.  LOL I'm brilliant, but late too the thought. If orthodox mainstream docs are willing to ignore something that is known and measurable. I can't depend on them to manage my care without me pushing them to do the right thing. That's why I'm ready to embrace going after what my docs aren't embracing. 

    I didn't want to start a new thread, but think I may have too. Rather would do it here. But the lack of due dilligence is bigger than I thought. But technical threads are just that, very technical and allot of work. Please, bear with me if I just keep it here. At this stage not sure I want to take on the work.

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  • Blueberry4
    Blueberry4 Member Posts: 98
    edited August 2014

    Tang, I'm so sorry for your loss. My DH's grandmother went that way. She wanted to just sit by herself for a while before coming down to breakfast, and when they checked on her a little while later, she had passed. She was a wonderful woman, and I always like to think she was ready to go and was peaceful.

    Smartly, congratulations! You look great, what an accomplishment.

    Enerva, you look great, too. You're very talented. How long did it take to make your top?

    Cami, you got me with the naughty lamp picture! Have fun swimming.

    Pawprint, I hope AAA came and you got on your way.  My kids leave the interior lights on all the time, so my battery dies all the time, in really inconvenient places.  I carry a portable charger in my car.  I've even helped other people out with it.  It's super easy to use and not scary like jumper cables. I know jumper cables are not really scary, but growing up my dad would make such a big deal about connecting everything at just the right time in just the right order that I thought I might blowup or catch fire if I did it wrong.  

    Last night was rough with taxol side effects, yuck. My treatment day is Tuesday, but the SEs hit the worst Friday. I' hoping for a better day.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2014

    Tang sorry about your SMIL's  Mother. 

    DUTCHY GIRL----OUCH

    Berry, sorry about the s.e's

    UpdateonPhillyinhouston. Started chemo yesterday, She's out to lunch today--literally not figurartively

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited August 2014

    Where is the Chevster? Chasing chickens, walking the alleys in search of some contraband. Maybe she ate too many of her pot laced tomatoes....

    Peppermint Patty, who hoo on the good news. Wonderful to feel better. I appreciate it everyday.

    Paw..aka BD, what a hassle. Good thing you were home, hope the rest of our day goes better.

    Blueberry, Taxol is painful, how many more? I think you might of said already..

    Big Thank-you to all, all the good wishes for DH, ( who wants out of the house ) and for concern over our flooded basement. 

    The fans down there blew out the pilot light to the hot water tank. No hot water. Waiting for the guy to come and restart the pilot light. Almost funny .Oh well.  Lots of people are dealing with bigger problems. 

    Tang, sorry for the loss. It's never easy even if its time. 

    2 weeks from today, I am going on a huge trip. If DH is ok on his own, it will be the one month date past FBB passing. 

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  • Blueberry4
    Blueberry4 Member Posts: 98
    edited August 2014

    HIO, I have 9 more taxols. Where are you going on your huge trip?  I hope your DH has a good day and continues to heal well.

    Good thoughts and well wishes to all.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited August 2014

    Blueberry, I am flying to NYC with my DD to go to the opening ceremony of the US Open. ( tennis ). We will also attend another day of the tournament. Planning on going to the Sept. 11 memorial, Central Park. I have been to NYC twice, so have seen most of everything already. Most likely go to the Guggenheim or the Museum of Modern Art. Then I will take the train to Washington DC, 3 nights, do as much sight seeing by myself as possible, DD will head to Boston. I have never been to Washington DC, so really excited about it. Also, the tennis will be a blast. I played competive tennis for 25 years. Hope to start playing again soon. I have drugged my feet on getting started since BC. Afraid of getting hurt. A little neuropathy in my feet. Thanks for asking. Oh, I had dose dense Taxol, so only 4 infusions.

    Not sure if this will work, you all know I am not a tech wizard. I think this is Phyliss clinical trial.

    Ok, someone will need to teach me how to copy the thread & bring it up here. It is under oligometastic thread. Now I have screwed up my iPad trying.  

    https://community.breastcancer.org/forum/102/topic/767259?page=549#idx_16443

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited August 2014

    OMG.....it worked ! , Nope maybe not.....:(

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