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    ((((((SuzE-Q)))))) ~ I hope my day tired you...

    ((((((SuzE-Q)))))) ~

    I hope my day tired you out enough to get some solid sleep! *wink I figure that my posts can have one of two effects: 1) wear out the reader to the point of sleep, or 2)...
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    ((((((Hugs to All)))))) ~ Sunshine ~ When...

    ((((((Hugs to All)))))) ~

    Sunshine ~

    When you've had a crisis during IVIg infusions at the hospital infusion center, what does your infusion nurse do? Whatever your hospital infusion nurse...
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    ((((((Virginia)))))) ~ I'm so sorry that I...

    ((((((Virginia)))))) ~

    I'm so sorry that I missed your post!

    Thank you! You are so very right. Jim trusts me to make decisions, and while he also appreciates having input, he has to be in...
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    The Past, Present, and Future

    ((((((Donna)))))) ~

    Thank you so much for your ideas and loving support.

    I have begun creating an outline for our Will. It is daunting, but it needs to be done. I've tried discussing it...
  5. ((((((Hugs to All)))))) ~ Is "functional" the...

    ((((((Hugs to All)))))) ~

    Is "functional" the new word to replace "idiopathic?"

    It seems like a catch-all phrase for "We know something is wrong, but we don't know what or why it is."

    In the...
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    ((((((Hugs to All)))))) ~ Trash bins to the...

    ((((((Hugs to All)))))) ~

    Trash bins to the street.
    Sun warms, sea breeze caresses.
    Smiling, my eyes close.

    Love & Light,

    *heart
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    Special Moments

    ((((((Hugs to All)))))) ~

    It took me 2 days to write my replies to you. It was too long as one post, so I broke them up into three posts.

    This post is about special moments in the past few...
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    ((((((funnylegs4)))))) ~ I appreciate your...

    ((((((funnylegs4)))))) ~

    I appreciate your enthusiasm so much, my friend, but I don't have the energy to research, package, mail, copyright, etc. to any organization, which might be interested in...
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    ((((((Virginia)))))) ~ Thank you for your...

    ((((((Virginia)))))) ~

    Thank you for your suggestion, which does make sense but isn’t feasible for me.

    Much of what I post here, I write in drafts on my old defunct email, then copy and paste...
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    ((((((Donna)))))) ~ Thank you so much for your...

    ((((((Donna)))))) ~

    Thank you so much for your love and prayers. I know you are with us always.

    My life has played in my head like a movie since childhood. There was a time, when I fancied...
  11. ((((((HWO)))))) ~ I'm so sorry for all that...

    ((((((HWO)))))) ~

    I'm so sorry for all that you're enduring. I hope the apnea machine gives you some helpful information, because I agree with others that some of your symptoms correlate with...
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    ((((((Hugs to All)))))) ~ Sunshine ~ Our...

    ((((((Hugs to All)))))) ~

    Sunshine ~

    Our home health agency has a pharmacy, which like all pharmacies, must order supplies, medication, and infusions, like IVIg. They have various sources from...
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    An Hour With John

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    Pure Sweetness


    ((((((Hugs to All)))))) ~

    John stopped by for an hour visit today. We hadn’t seen him since Jim’s appointment with Dr. K. We used to see him at least twice a week,...
  14. ((((((Sunshine)))))) ~ Just FYI ~ Jonathan's...

    ((((((Sunshine)))))) ~

    Just FYI ~ Jonathan's home health nurse (and now Jim's nurse) gives IVIg infusions at home with no problems. You'll want to make sure that the nurse is a qualified...
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    A River Runs Through It

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    ((((((Hugs to All)))))) ~

    Yesterday, I wrote a lengthy, rambling response, and, after reading it, decided not to post it. I thought I should give your eyes a rest. Well, here’s my feeble...
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    ((((((Hugs to All)))))) ~ SATURDAY ...

    ((((((Hugs to All)))))) ~


    SATURDAY

    Distant train whistle,
    steel wheels churning, tracks clacking.
    Someone’s coming home.

    Roaring jet above,
  17. ((((((Linda)))))) ~ Just beautiful! So much...

    ((((((Linda)))))) ~

    Just beautiful! So much love being shared in those moments between all of you. I hope that this couple returns to the Farmer's Market often to purchase your wares and enjoy...
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    Cancer, Grief, and the Gift of the Magi

    ((((((Hugs to All)))))) ~

    Today was enlightening. I learned from Jim that he’s had back pain for most of the week, after he sat down too hard on the toilet. He didn’t want to tell me, because he...
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    ((((((Hugs to All)))))) ~ Virginia ~ It...

    ((((((Hugs to All)))))) ~

    Virginia ~

    It might be different if Laurie's dad was visiting, and she invited you to join them for coffee or lunch. But it sounds like her dad is seeking a companion...
  20. ((((((funnylegs4)))))) ~ Expanding your work...

    ((((((funnylegs4)))))) ~

    Expanding your work to the theater is very exciting! You have my support all of the way.

    It is challenging, and it shouldn't be this way in 2019. I am so frustrated...
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    ((((((Hugs to All)))))) ~ Birds' evening song...

    ((((((Hugs to All)))))) ~

    Birds' evening song
    comforted me at sunset.
    Voice of My Angels.

    Love & Light,

    *heart
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    ((((((Hugs to All)))))) ~

    Sarah’s maiden name should be “Huckster,” because that is what she was for DT.

    For all of her religious righteousness, she lied for him, avoided questions, snarled...
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    ((((((Hugs to All)))))) ~ I'm sorry. I know...

    ((((((Hugs to All)))))) ~

    I'm sorry. I know we are all trying to avoid the political turmoil happening, but we can't really do that, when the occupant of the Oval Office continues to defame and...
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    A Father's Day Gift for the World's Best Dad

    ((((((funnylegs4)))))) ~

    Actually, Jim recanted on taking 20 mg instead of 10 mg last week. But he can become easily confused, as he did when he took 17.5 mg. We're back to 10 mg now for a few...
  25. ((((((funnylegs4)))))) ~ Thank you for sharing...

    ((((((funnylegs4)))))) ~

    Thank you for sharing this article. It's shameful that it has taken til 2019 for an actor in a wheelchair to win a Tony. Broadway has seemed more inclusive than...
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    ((((((Hugs to All))))))~ Jeanie ~ Way...

    ((((((Hugs to All))))))~

    Jeanie ~



    Way to go! Congratulations! I'm so happy you had PT today. Sweet dreams during your nap!

    Love & Light,
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    ((((((funnylegs4)))))) ~ You are definitely...

    ((((((funnylegs4)))))) ~

    You are definitely not ignorant! And I can certainly understand why you have that question.

    Steroids are typically used to reduce inflammation. Steroids are given to...
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    ((((((Joan)))))) ~ Nope. Not a coincidence. ...

    ((((((Joan)))))) ~

    Nope. Not a coincidence.

    Here's what I believe: Everyone we know and love, Jonathan and Michael know and love. They know where to direct their energy, their love and...
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    ((((((Hugs to All)))))) ~ Today, I finally...

    ((((((Hugs to All)))))) ~

    Today, I finally found the opportunity to ask Jim a question, which has caused me to wonder, since the day Jonathan passed.

    I didn't know how to phrase it correctly,...
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    ((((((Hugs to All)))))) ~ jeanie ~ I agree...

    ((((((Hugs to All)))))) ~

    jeanie ~

    I agree with Sunshine. Call your PCP and your surgeon and let them know that you're going without PT. Remind them of how long you have been suffering and...
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    ((((((Hugs to All)))))) ~ Thank you, Mary...

    ((((((Hugs to All)))))) ~

    Thank you, Mary Grace and funnylegs4 ~

    Today, as we were discussing Jim’s weaning down on steroids, he informed me that he’d been taking twice his dose last week, from...
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    Changes

    ((((((Hugs to All)))))) ~

    Christmas is officially over as of today. I finally collected, wrapped and put away all of the Christmas decorations in Michael’s and Jonathan’s rooms. One globe is...
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    ((((((Hugs to All)))))) ~ Thank you,...

    ((((((Hugs to All)))))) ~

    Thank you, Virginia. Another poignant song in the Concert for George is Ringo Starr’s rendition of “Photograph.” Now, I cry twice as much, when I hear it.
    ...
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    Day Three Off of O2

    ((((((Virginia)))))) ~

    Thank you.

    Jonathan loved cars too. We have an adorable photo of him about 5 years old peering into the driver's side of our 1969 FIAT, reaching for the steering...
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    Day Two Off of O2

    ((((((Hugs to All)))))) ~

    Thank you so much ANN, Marcie, SuzE-Q, Virginia, and funnylegs4! *hsmile

    DAY TWO off of O2, and Jim continues to hold SATS in the mid 90s.

    This morning, he was...
  36. ((((((Hugs to All)))))) ~ Lazarus ~ Has...

    ((((((Hugs to All)))))) ~

    Lazarus ~

    Has your urologist ever discussed the Medtronic InterStim with you as an alternative to medication?
    ...
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    Fantastic New!

    ((((((Hugs to All)))))) ~

    Are you ready for some fantastic news? Not just good. Fantastic.

    Jim is off of O2!

    When I came down this morning to start our day, I noticed that his cannula was...
  38. ((((((Michael Thompson)))))) ~ *Welcome ...

    ((((((Michael Thompson)))))) ~

    *Welcome

    funnylegs4 provided you with some excellent suggestions.

    This situation could be a good opportunity to teach your daughter about self-image, since...
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    ((((((Hugs to All)))))) ~ SuzE-Q ~ Please...

    ((((((Hugs to All)))))) ~

    SuzE-Q ~

    Please know that you have no reason to apologize to me. I certainly didn’t feel abandoned or anything of the sort.

    The MS forum is very active, and you...
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    New Signs

    ((((((Hugs to All)))))) ~

    Marcie, Virginia, SuzE-Q,, funnylegs4, ANN, & Mary Grace ~

    Thank you so much for your sweet replies. I truly do feel all of your support every day, and I’m so very...
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    ((((((Hugs to All)))))) ~ funnylegs4 ~ I...

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I have to return Jonathan's O2 supplies, because they are rented, and Medi-Cal is paying for them. Same with Jonathan's feeding pump rental. I should...
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    I'll See You In My Dreams

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    ((((((Hugs to All)))))) ~

    Every night, before I climb into bed, I place kisses on the photos of Jonathan and Michael on the nightstand and ask them to visit me in my dreams. I have been...
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    Another Long Reply

    ((((((Hugs to All)))))) ~

    Caution: This is lengthy. I’ve been composing it on and off for the past couple of days. I’m just trying to process everything. And take extra good care of Jim. Thank...
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    ((((((Hugs to All)))))) ~ Virginia and...

    ((((((Hugs to All)))))) ~

    Virginia and funnylegs4 ~

    Yes, I was astonished when I was told that Jim would perish with a mask on any level lower than 5 liters. I immediately realized that...
  45. ((((((hootswithowls)))))) *Welcome BACK! ...

    ((((((hootswithowls))))))

    *Welcome BACK!

    Just to clarify ~ I don't have MS, but the wonderful friends here let me hang out with them.

    Have you consulted an Ear, Nose, Throat specialist? ...
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    Standing At the Crossroad

    ((((((Hugs to All)))))) ~

    Prepare. This is lengthy.

    We managed to be ready by 11:30 this morning, with our assortment of bring-along-just-in-case items stuffed in the pockets of Jim’s...
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    ((((((Virginia)))))) ~ Thank you so much, dear...

    ((((((Virginia)))))) ~

    Thank you so much, dear friend. It truly does help us to know that you're thinking of us and sending us positive energy. We feel it, and we know that it's a very large...
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    ((((((Hugs to All)))))) ~ Jeanie ~ So...

    ((((((Hugs to All)))))) ~

    Jeanie ~

    So wonderful to see your post! Thank you for making the effort. I hope it made you feel better inside to connect here, even though it hurt your bum. ...
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    Sixteen Years And 48 Days of Grieving

    5228

    TAKE CARE OF DAD


    ((((((Hugs to All)))))) ~

    For the past 15 years since Michael passed, Jim and I have spent Michael’s Angelversary with Jonathan remembering and grieving. Jonathan...
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    *forgetmenot ((((((Peg)))))) ~ Your stories...

    *forgetmenot

    ((((((Peg)))))) ~

    Your stories of farm life, your family, the incredible meals you created for all of them, and your cheerful, positive attitude has inspired me for many years. ...
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    Happy Birthday Joan!

    5227

    HAPPY BIRTHDAY JOAN!

    Hope you have a lovely day!

    Love & Light,

    *heart
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    ((((((Jan)))))) ~ Sunshine has a thread in the...

    ((((((Jan)))))) ~

    Sunshine has a thread in the Stiff Person Syndrome forum exclusively about MMJ:
    ...
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    ((((((Hugs to All)))))) ~ houghchrst ~ ...

    ((((((Hugs to All)))))) ~

    houghchrst ~

    Thank you so much for the charitable links. Some of the charities are out of state for me. I'm going to ask Nancy what she can use for her patients....
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    ((((((Hugs to All)))))) ~ Donna ~ Jim's...

    ((((((Hugs to All)))))) ~

    Donna ~

    Jim's appointment with Dr. K is on Friday, 5/31 at noon Pacific. Thank you so much for your prayers.

    When John was here on Friday, we talked about Jim's...
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    ((((((funnylegs4)))))) ~ Thank you so much. ...

    ((((((funnylegs4)))))) ~

    Thank you so much.

    I think, as a filmmaker, you are seeing us through your camera lens now. Our experience is resonating with you in a different way and providing you...
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    ((((((Donna)))))) ~

    Well, I am the “older lady” on Marlowe Crescent, who should be bringing food to new neighbors and welcoming them. Instead, I wave to new neighbors, when I get the mail, or...
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    ((((((Virginia)))))) ~

    I’m so sorry for all you endured after losing your husband. “Your right arm.” I feel the same way about Jim, of course, because we spend every day and night together, and...
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    ((((((Hugs to All)))))) ~ funnylegs4 ~ Rep....

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Rep. Jerry Nadler, who is 71, was dehydrated. I recognized it immediately, when I saw the clip of his episode. He looked and behaved very much like Jim...
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    Grieving Together

    ((((((Hugs to All)))))) ~

    Virginia and Donna ~

    Thank you so much. I will reply to your wonderful posts soon. Today, I had a rather overwhelming day, which I wanted to share with all of you. ...
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    Nagging

    ((((((Hugs to All)))))) ~

    ANN ~

    Thank you so much for your continuing support and for your blessings.

    Jim seems to be at a plateau now. I noted this evening that his urine is rusty, and I...
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    The Sisters Of Sorrow And Bliss

    ((((((Virginia)))))) ~

    Thank you so much for reassuring me that I'm not wearing out everyone. I feel like I should be paying all of you, or least sending you all some kind of gift card. I truly...
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    ((((((Hugs to All)))))) ~ Thank you Cherie and...

    ((((((Hugs to All)))))) ~

    Thank you Cherie and Virginia for keeping us updated on Jeanie. What a trooper Jeanie is! I'm so happy to hear that her fractures are mending. May she just keep...
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    ((((((Hugs to All)))))) ~ agate ~ I...

    ((((((Hugs to All)))))) ~

    agate ~

    I couldn't read the entire article, because I felt my blood pressure rising.

    At his rallies, he loves to tout his slogan, "Promises made. Promises kept."...
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    Letting Go And Holding It In

    ((((((Donna)))))) ~

    Geraniums and ivy are hearty plants. We have several geraniums started from my aunt's geraniums. When they get leggy, I cut them and just plant the stem in the pot. It's...
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    ((((((HUgs to All)))))) ~ Thank you Donna,...

    ((((((HUgs to All)))))) ~

    Thank you Donna, Tamie, and Mary Grace for your positive energy and prayers and for continuing to lift us up.

    In the past few days, Jim has been taking off his O2...
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    ((((((Cat)))))) ~ Thank you so much for your...

    ((((((Cat)))))) ~

    Thank you so much for your encouragement. concern and care for us. It's difficult to find time for myself, but I do have my morning walks, and I can vent here and be understood...
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    ((((((Donna)))))) ~ Our age and the ages of...

    ((((((Donna)))))) ~

    Our age and the ages of our children, and the number of crises we've been through are definitely contributing factors to how well we cope now. No one is as resilient in their...
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    ((((((Hugs to All)))))) ~ nuthatch ~ Love,...

    ((((((Hugs to All)))))) ~

    nuthatch ~

    Love, love, love these quail photos. Such elegant birds. I bet the babies are darling. And, just WOW! on your poppies!! Gorgeous!

    We're having a...
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    ((((((Hugs to All)))))) ~ ANN ~ Has any...

    ((((((Hugs to All)))))) ~

    ANN ~

    Has any part of you not been tested, examined, scrutinized? It's certainly understandable that you're weary of medical appointments. I hope you get a...
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    Improvements

    ((((((Hugs to All)))))) ~

    Today, I scheduled an appointment for Jim with Dr. K on 5/31 at noon. If he needs ambulance transportation, Dr. K's nurse said that would be fine.

    I asked about his...
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    ((((((Hugs to All))))))~ funnylegs4 ~ You...

    ((((((Hugs to All))))))~

    funnylegs4 ~

    You are not mistaken. I was sleeping on the chairbed in Jonathan’s room, when he passed. Jim was sleeping in his futon bed in the living room.

    When I...
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    Remembering

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I appreciate your suggestions. Jim can't figure out how to work our new TV/Cable remote, so I doubt that a digital notepad would be of use for him.
    ...
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    Love

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you so much.

    Jonathan definitely knew and knows how much he is loved. Look at his eyes, his smile, his angelic expression. Jonathan is adored...
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    Memory, Medicare, and Meanwhile

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you for the suggestion. I have tried getting Jim to write notes to help him remember. He forgets to write notes. He forgets where the pad and pen...
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    ((((((Hugs to All)))))) ~ Moderator #7 ~ ...

    ((((((Hugs to All)))))) ~

    Moderator #7 ~

    Thank you so much for providing me with the WHO resources. We donated all of Michael's supplies to a community in Mexico, sponsored by our dear...
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