INSOMNIACS place to talk in the wee hours

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  • kathindc
    kathindc Member Posts: 2,042
    edited January 2018

    Love that one JunieB.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Thinking of you MammaR

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Mamma Ray, all will be revealed.

    Blue all drugs have consequences. All drugs react differently within us.

    You---Plese,-try to find out in the xeloda group where you fit on the 180 degree spectrum. I mentioned Lisinopril. Lisinopripl's 180 degree spectrum ranges from zero cough >>>>to mild cough>>>strong cough>>>hang over the sink and puke cough. What is the experience of the Xeloda group?

    There is the difference between the reading about a drug and the taking of a drug.

    For example, pain med. We --medical and patient- can come to very specifics about what is pain. Even more so if the medical practitioner has experienced pain. Then it's a shared knowledge.

    What is important is to share our knowledge about drugs. That's why many of the threads exist on BCO about drugs. The drugs went through clinical trials. Many affects are not noted until after market wide usage.

    The Aromatase Inhibitors are a classic example. The musculoskeletal effects were not noted in clinical trials. I viewed a video of one of the lead researchers saying such. His following comment was "We will have to look at this" My reaction was "No, shit Sherlock" I was on about 5 drugs to control the pain and side effects.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    While talking about drugs, I will again make my opinion noted about Tramadol. I consider it a very unsafe drug. My opinion is it should be taken off the market.

    Reason is it has a twofold affect, pain receptors and serotonin affect. My concern is the serotonin affect. No other pain reliever affects a synaptic neurotransmitter. Never mess with neurotransmitters unless you intentionally want to do so.

    SNRI- selective neurotransmitter reuptake inhibitor

    SSRI- Selective serotonin reuptake inhibitor

    SSNRI- selective serotonin norepinephephrine inhihibtor

    Tramadol messes with serotonin. Messing with serotonin sucks. The cardinal example is ask anyone trying to come off Effexor. Which I also consider one of the worst drugs in the world.

    You take a dose of tramadol for pain. An individual dose may mean nothing. But daily doses. Trouble, It has been moved to a higher drug schedule because it has become a drug of abuse. WHAT does that tell you?

    Sucky drug.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Transferring both post to Pain and things

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Things get real quiet when there is a disturbance in the force. It's hard. We don't want disconnection, but also don't want conflict.

    But IF we don't maintain what we thought ought to be then it will fade for this time....................

    What it will return to is the true days of insomnics. They were sooooooooofunny and necessary. Before page 180.

    One of the things that came out of those nights was a recommendation to the mods to develop the Spanish section. That was so cool(60's nerd).

    Lurking is wonderful, we observe, evaluate, learn.

    Engagement is better. Engaging by posting, or better yet by calling.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    Sas - I have checked and read the Xeloda thread completely. What a hunk of info. I was often at puking and coughing, the phlegm came out like water like I had been drowning. Not always. Most that have or had the cough was coughing and or had excess phlegm for no reason. But I already had the cough for other reasons too.

    On a lighter note.... one of my favourite winter stories I wrote long long long ago. We lived at a cottage for awhile, we are now married 38 years. Enjoy if you are awake in the middle of the night.

    http://www.womens-fiction.com/humor/i-hope-the-nei...

    and these two that I posted sometime back somewhere, probably here....

    http://www.womens-fiction.com/short-stories/gracie...

    http://www.womens-fiction.com/dense-observations/m...

    settling down to a long winter's night.

    Sas you reminded me of Fuzzy's Romp Room. And They found the cure for stupid. And You know you're a breast cancer patient when. All threads that have lost their action but the life and party was magnificent too.

    edited to add photo

    image

    my fantasy cottage

    image

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Blue, when you went back to the xeloda thread, did you know that the drug could cause such coughing? Clarifying you learned of the cough (nightmare ) by going to the xeloda thread? The other coughing was likely the pneumonitis.

    The key when something happens is never assume it is one thing. It's like unwrapping a package a layer at time.

    NOW the question comes is the pneumonitis resolved? If so would the reintroduction of xeloda be relevant. Sometimes a washout period allows for the reintroduction of a drug. The reason to try the drug after a washout is b/c that drug may be life saving.

    A typical washout period is 8 weeks. I did that with Arimidex. In the washout period it's important to NOT change other factors. At the end of 8 weeks, I introduced Femara. Within 3 weeks many of Arimidex's s. e. returned. I was then done with Femara. I introduced Aromasin sometime later, but I forget the time between drugs. Couldn't even surmise. I took Aromasin for maybe a year. Maybe longer. Memories are totally gone.

    All of it occurred for me in the time period that we didn't know my CYP450, CYP3A4 was abnormal. It was intermediate.(slower). I should of had a reduced dose.

    The silver lining, I had a higher dose for a shorter period. Now they call that Dose Dense. Go figure.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Blue LOVE the cottage. Life long dream to live in such a cottage. With a completely state of the art inside. i.e kitchen, baths. laundry etc

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Blue ----Essa the stories are great. So, much fun.................. :)

  • JunieB
    JunieB Member Posts: 1,023
    edited January 2018

    My apartment is soooo quiet and lonely. Mr. Kirby is still at the trainer's. She is working with him on his distraction matters. She took him to the post office one day on lead and he reacted to a teenager on a skateboard, then when she deliberately took him into her chicken coop on lead once, he tried to chase one of the chickens. Kirby got a scolding for that. The hope is that he will learn to not react to other animals in public places, (i.e., the bus, restaurant, doctors office, etc.) He is nearly 15 mos. old and still a puppy, so with maturity he will get better at it.

    However, he is having a great time with his buddy Murphy, a Labradoodle. They became acquainted last spring when Kirby was there. The plan is for Kirby to stay until the end of January. Sigh!!! That feels like forever from my end. The apt. is empty and I don't have to struggle for blanket coverage in bed. Sigh!!!

    Sas - Stomach has finally gotten better and I am again eating real food.

    Blue - What a pretty little cottage.

    Image result for happy monday gif

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    Junie - I would miss Danny Boy so much if gone that long, even an afternoon would do it. Though I understand your goal. Considered training DB for service but never did.

    Sas - the Xeloda did not work for me, liver lesions grew in spite of being on it for 8 months. So not going back there. The pneumonitis was from July through mid-November. And couples with me going off Xeloda on Nov 25 or so. You are so right, there are layers and overlaps and no one knows anything for sure when moving too quickly. Fortunately, I do know the cough was caused by factors --- the lymph nodes w cancer all around my bronchioles and partially closing off superior vena cava vein.... the developing asthma from that too ..... the cancer drugs perhaps but definitely from Xeloda since that ws when the phlegm started too..... and the pneumonitis. I tracked down the question - is this from lupus and got a no, it was from the others.

    Glad you liked the stories. I need to have fun and write more.

  • Beatmon
    Beatmon Member Posts: 1,562
    edited January 2018

    Sas: you know me...I’m not asking you to be my Dr. Want to pick your brain about pain meds. I’m on a Fentanyl patch. Got to that point partially because oI’m unable to take the OxyContin, hydrocodones etc due to severe itching. Fentanyl does not relieve pain entirely of course. Tried Dilaudid for breakthrough...same thing. I’m talking itching head to toe and everything in between.

    Now on Tramadol...maybe 1 every 3-4 days. Worried after I read your post. Do you know of any meds not related to these that ladies have taken successfully to help with break through pain? My oncologist is always open to any suggestions.

    What distresses me is that all my pain and physical restrictions are from side effects left over from the Taxotere and the continued use of Herceptin and Perjeta. Unfortunately I’m not one that is able to smoothly take this cocktail. I hate to complain because I’ve had great results with tumor load.

    Thanks in advance if you or anyone else has suggestions. Brenda

  • CeliaC
    CeliaC Member Posts: 1,320
    edited January 2018

    Junie - Mr. Kirby is such a cutie, I would miss the heck out of him, also.

  • Joanne58
    Joanne58 Member Posts: 1,117
    edited January 2018

    Letting you know that sweet MammaRay passed away this morning. I'm posting some pics of her visits with me in California. I'll miss her, terribly, but am glad she's free from any mortal pain. I know she will watch over her family and friends and is enjoying a reunion with her Grandparents. She has parents and siblings nearby who will help support her husband and young son. Many thanks for all your kindness and support to Rachel. She loved the posts of encouragement, cards you sent, and she truly loved all of you!

  • Wren44
    Wren44 Member Posts: 8,585
    edited January 2018

    Joanne, Thanks for letting us know. And for posting the pictures. Sad news indeed.

  • kathindc
    kathindc Member Posts: 2,042
    edited January 2018

    I was just on the Prayers of MammaRay thread. She passed away this morning.

  • Joanne58
    Joanne58 Member Posts: 1,117
    edited January 2018

    The mods were alerted by a member re the pics I posted of MammaRay so I decided to remove them. So sorry. I know she posted pics of her son, but it's been quite a while since she posted any pics of herself. Anyway, I don't want to upset anyone on the boards--rather keep the notice of her passing as kind and reverent as possible.

  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited January 2018

    Rest in peace Little Sis. I will miss your sweet & gentle voice and our text exchanges late into the night.

    Joanne, could you please PM me the picture of MammaRay and her son? Thank you. Amazing how he looks like her.

  • Joanne58
    Joanne58 Member Posts: 1,117
    edited January 2018

    PM with extra pics sent. Thanks for asking, Loveroflife :)

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Joanne thanks for the notice. Sorry about your pics being reported. I think Loverly will have an opinion.

    Beatmom thanks for the request, I saw it yesterday and have been thinking. I would love to work on the drugs with you. Hopefully, it would help you, but it will get my brain working too!.

    I think you should have the pain genetic panel done. Genelex does it, but there are likely other companies too. Shepkitty had hers done by Genelex. It told her many things. Hopefully she will pop in and chat. She was happy with the results, but not the insurance. But she will also be able to help navigate the insurance.

    The reason I think it is important is you are describing a myriad of symptoms. When that occurs, things are muddled.

    My counselor who I introduced to Genelex. Started a session one time thanking me for the introduction. Wow how often does your practioner thank you? He had a patient that was a mess with mood swings. He was trying to adjust her on Prozac. But she was swinging wildly. He then decided to have her tested. Prozac only is metabolized by 2D6. For her, that metabolism route was totally absent. He wouldn't have known that without the testing. Many(most) of the psychotropic drugs are metabolized through this route

    He was able to work with the Genelex pharmacist and concluded Zoloft would be the drug of choice b/c it doesn't use that path. She was stabilized. This was 2011. Since that time he would not recommended any psychotropic without testing.

    First ask your doc for the order for testing, and then work on the insurance approval with Genelex.

    Secondly, Within the next few days, you send me your list of all drugs that you have symptoms with and all drugs that you took a year prior to onset of symptoms. I will enter them in my YouScript(genelex) drug checker. We then sign on at the same time. You will be using my username and password. Me too. We are both looking at the same screen. We then go through the drugs. At the same time you will be learning how to use the drug checker.

    One of the wonderful features is it suggests alternatives. We then keep substituting alternatives until the profile works it too the least drug interactions. I've done it with many folks.

    The disadvantage is your genetics won't be listed. But I can show you my profile and how the genetics change the choice of drugs, or warns that a drug won't metabolize right or at all. The perfect thing is to have the genetics. The next best is to use YouScripts info b/c it so easy to manipulateand read the info. The worst is to do it by hand using the PDR. OH vey, that's what I did with my Greg's drugs before I found Genelex.

    I first learned of Genelex in 2010. They were the only ones doing it in the world. Happened upon them with the right Keywords plopped into google. Genelex has now spun, YouScript, off to an independent division or company, so, they could license the program separate from the laboratory division.

    Send me your list :)

    I talked with Phyllis today. She started a new trial. It's the best yet for almost no side effects. She was excited and encouraged.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    If I should Die poem

    IF I SHOULD DIE

    ....

    You've just walked on ahead of me

    And I've got to understand

    You must release the ones you love

    And let go of their hand.

    I try and cope the best I can

    But I'm missing you so much

    If I could only see you

    And once more feel your touch.

    Yes, you've just walked on ahead of me

    Don't worry I'll be fine

    But now and then I swear I feel

    Your hand slip into mine.

    If I should die before the rest of you

    Break not a flower nor inscribe a stone

    Nor, when I'm gone, speak in a Sunday voice,

    But be the usual selves that I have known.

    Weep if you must

    Parting is hell.

    But life goes on.

    So sing as well.

    by Joyce Grenfell

    ///////////////////////////////////

    This poem reminds me of Rachel. Our first talk wandered to life after death. She did believe in life after death, but was unsure of how it all worked. Who does, but that's Faith. She was most concerned about her hubby and son. The line about "Parting is hell" sooooo, is Rachel's attitude about dying. Actually, she was more demonstrative about it

    Love you Rachel....................sassy

  • Joanne58
    Joanne58 Member Posts: 1,117
    edited January 2018

    Perfect poem for our Rachel. Thanks, Sas.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018
  • JunieB
    JunieB Member Posts: 1,023
    edited January 2018

    Sas - That is a perfect poem. I am so sad for her DH & son that she has gone on ahead.

    Joanne58 - I would also like a picture of Rachel via PM, please.

  • Joanne58
    Joanne58 Member Posts: 1,117
    edited January 2018

    Junie--Sent some pics for you. Thanks for asking :)

    Sas--Just reread the poem and realized how that's what Rachel always said: "I'll be fine," or "I'm fine." It's as if she wrote the poem.

    And she did write poetry. Here's one I'll share with you that she printed and made into a book mark. I keep it in my scriptures and cherish it.

    "Road Trip"

    Within each journey lies unique terrain,

    Paths of joy or mountains of pain.

    Though sun ascends to shepherd through our way,

    Darkness finds us at the end of the day.

    Faith may waiver; succomb by weight of fear,

    Doubts preventing roads from being clear.

    Atop the mountain is a broader scope,

    Giving views of peacfulness and vistas of hope.

    Courage is found when with an alied soul

    Companioning the trip with their role.

    When feelings of discouragement persist,

    And confidence easy to resist--

    We find the strength within an outstretched hand,

    An Oasis in a lonely land.



  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited January 2018
  • kathindc
    kathindc Member Posts: 2,042
    edited January 2018

    Feelingfeline, you took the word out of my mouth re the poem. Rachel will be greatly missed.

  • M0mmyof3
    M0mmyof3 Member Posts: 9,696
    edited January 2018

    Lover, SIL is military.

    Sorry I haven't been around. Just took a break.

    Out of the snow storm we got hit with here in the Northeast, I got 16 inches of snow at my house.


  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2018

    Joanne whew.......

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