TheBanyanTree: Change
Gloria
burns.gloria at gmail.com
Sun Feb 6 09:45:34 PST 2022
Sorry, Monique. The last thing I wanted to do was to appear to be
minimizing the hell you're going through. I get it. I do!
I also get the overtiring and the effects from it. I've lived with that for
3 yrs plus now with the disease I have, the effects of the meds I had to
take, and balancing what's healthy activity and what's too much. I needed
to know that my adrenal glands were going to work again, because sometimes
they don't after years of prednisone. It was a hellish rollercoaster ride.
I think I'm one of the lucky ones. Mine woke up.
I know your situation and it's not pretty and it's not going to get better,
as you've said. I believe you. I'm not minimizing. I feel for you. I wish I
could make it better. I love you and I care a lot about you.
And absolutely, the more you can accept what is, the happier you'll be. I
think that's the same for all of us. When I wrote, never give up, it was
with the intention of saying keep doing what you're doing. Don't go lay
down somewhere and hope you don't wake up. Because sadly, that is what some
people do. I see it everyday with people in my vascular group. They give
up.
Hugs for your day.... xx
On Sun, Feb 6, 2022 at 12:27 PM Monique Colve via TheBanyanTree <
thebanyantree at lists.remsset.com> wrote:
> No. I have loss of brain mass. Anesthesia can make it worse, of course,
> but not for this length of time, and it's been getting worse for a long
> time now. I have long term memories, and I know the difference. This has
> been tested and retested and it's an actual fact. You're minimizing what I
> know to be true, which is, as I said, what people tend to do. It's one of
> the reasons I can't work. It's vascular Parkinsonism.
>
> I'm not your mom or your coworker. I'm me. When I go to PT I have to
> remind them not to overtire me, because once I came home and my vision
> blurred out. That's another event just waiting to happen, or not, no one
> can tell without more tests. Anyway, I go to PT to have fun. We laugh, we
> joke, we work hard, but not so hard I blow my brain mass up more.
>
> I find the more I accept what is, the happier I am. I have my own person
> right here to tell me what has gotten worse and what hasn't - he sees me
> every day. The memory loss is such a slow process.
>
> The key is to know when to quit - I kept working because "keep trying" but
> I also damaged myself by having another stroke. Knowing when to quit is the
> important part.
>
> Monique
> Sent from my iPad
>
> > On Feb 5, 2022, at 8:36 PM, Gloria via TheBanyanTree <
> thebanyantree at lists.remsset.com> wrote:
> >
> > Perhaps being put under for surgery hasn't worn off yet, or perhaps it's
> > just the way it is this week or both and then some. The fact that you
> know
> > you're unable to remember things is a positive. Never give up trying.
> >
> > My mom had stroke-induced short-term memory loss so I've witnessed that
> up
> > close and personal. If I had a reliable memory I'd remember how long it
> > takes to move something from the short-term area of the brain to the
> > long-term. My memory has never been great and all I can remember about it
> > is that there is a timeframe for it. Bah!
> >
> > I also remember a coworker that was only 12 yrs my elder telling me that
> > he'd forgotten more than he knew. Shoot, he was probably about 40 when he
> > said that. I remember not understanding how that was even possible. I
> sure
> > do get it now! On the other hand, those with phenomenal memories seem to
> > suffer greatly with the knowing of all they have lost. People in their
> > lives, youth, missed opportunities, belongings. For some reason, feeling
> > the pain from loss is more powerful than remembering the joy felt during
> > pleasant times.
> >
> > Speaking of mom reminded me of her standard answer to "How are you?"
> after
> > her stroke. "Well, I'm still here and I'm thankful for what's good, and I
> > hope the bad gets better." I know it helps me to remember that on my
> down
> > days.
> >
> >> On Sat, Feb 5, 2022 at 10:46 PM Monique Colve via TheBanyanTree <
> >> thebanyantree at lists.remsset.com> wrote:
> >>
> >> I've been recovering from I don't know what, but all week I've been
> unable
> >> remember Canute's name! For days! It's hilarious - poor dog. I'll call
> him
> >> Ash, or Dog, or hey you, then I'll remember and blurt out "Canute!" I
> try
> >> to keep my brain active, but my short term memory is s***. People will
> say,
> >> "oh, I do that too!" But no. That was just an example. It's constant
> with
> >> the newer things I have to remember. Having a conversation with me
> requires
> >> a lot of patience and guessing! I forget I had a recent knee surgery and
> >> I've been walking around like it's all better!
> >>
> >> Monique
> >> Sent from my iPad
> >>
> >>> On Feb 5, 2022, at 7:00 PM, LaLinda via TheBanyanTree <
> >> thebanyantree at lists.remsset.com> wrote:
> >>>
> >>> Of course, it's a challenge, sometimes, especially when overwhelmed
> with
> >>> fatigue and/or pain or whatever, but I feel as Monique does...that it's
> >>> important to look at all that I have and be glad. It helps, a lot. I'm
> >>> sut]re you experience all of this, too, Glo.
> >>>
> >>>> On Sat, Feb 5, 2022 at 12:41 PM Gloria via TheBanyanTree <
> >>>> thebanyantree at lists.remsset.com> wrote:
> >>>>
> >>>> "She still is." I'm going to remember that and keep my ears open. I
> >> don't
> >>>> think I've ever witnessed something like that. Wow.
> >>>>
> >>>> We are not our illnesses. We are much much more than that, as
> evidenced
> >> by
> >>>> you regularly, LL and Monique, and all other tree dwellers. I see no
> >> reason
> >>>> to stop being who we are. Party on!
> >>>>
> >>>> On Sat, Feb 5, 2022 at 7:37 AM LaLinda via TheBanyanTree <
> >>>> thebanyantree at lists.remsset.com> wrote:
> >>>>
> >>>>> Laura is so right, and today has enough stuff of its,own, including
> >>>>> adorable puppy stuff.
> >>>>>
> >>>>> I like what you said, Laura about us not being our illnesses. When
> >>>> Grandma
> >>>>> D was in the nursing home and I was visiting with the kids, one day,
> a
> >>>>> nurse/attendant/WHOMEVER said too me,
> >>>>>
> >>>>> "She gets a lot of company." Y au-\nat an uncle were there, about
> >> every
> >>>>> day to feed her and watch over her. I answered,
> >>>>>
> >>>>> "Yes, she does." She responded, "SHE MUST HAVE BEEN A WONDERFUL
> >> WOMAN." I
> >>>>> felt as though she'd slapped me. i didn't get testy, I just said,
> >>>>>
> >>>>> "She still is."
> >>>>>
> >>>>> My thing is, we are here until we are not, and we all witnessed times
> >>>> when
> >>>>> Gram hadn''t spoken for months, but would come out with something as
> >>>> clear
> >>>>> as a I have theories about that. When I took the kids, we went to
> see
> >>>> HER,
> >>>>> and kind of, for a lack of a better word, minister, or "give" to her.
> >>>>> They'd read her their little kiddie books and sing new songs they'd
> >>>>> learned, and though she hadn't said anything in three months, when
> >>>> Stephen
> >>>>> hid behind the door, she said,
> >>>>>
> >>>>> "What's the matter, baby?" She spoke too Christine,
> >>>>>
> >>>>> "How are you, beautiful?" And, to me, she said
> >>>>>
> >>>>> "You have a nice face."
> >>>>>
> >>>>> My aunts and uncles were flabbergasted. They were there, constantly,
> >> and
> >>>>> there was constant chatter. I do think she was partial to one, since
> I
> >>>> was
> >>>>> her first grandchild and she didn't see me from the time I was a wee
> >>>> little
> >>>>> one until I was, ha! an "adult," and met her and my father, and
> that's
> >>>>> another story.
> >>>>>
> >>>>> Another time, a lot of us were there, as usual, everyone was
> chattering
> >>>>> over her. Some weirdo things were said, my crazy aunt was there and
> >> made
> >>>> a
> >>>>> remark about Gram being "trapped" in her body. It broke my heart.
> She's
> >>>>> right here and she can hear you, you dumb ass! Gram always said that
> >> I'd
> >>>>> she found out she had Alzheimer's, she would go out the back door and
> >>>> throw
> >>>>> herself into the river. My aunts and uncles lost control of that when
> >> the
> >>>>> doctor ça,e right out and told her.
> >>>>>
> >>>>> "What is WRONG with me?" Gram asked her.
> >>>>>
> >>>>> "Dorothy," the doctor began," have you ever heard of Alzheimer's
> >>>> disease?"
> >>>>>
> >>>>> "Yes."
> >>>>>
> >>>>> "Well, that is what you have."
> >>>>>
> >>>>> The aunts and uncles were angry, but, hey. Whatever. She was still a
> >>>> person
> >>>>> and deserved to know...she ASKED.
> >>>>>
> >>>>> Back to looney-tunes aunt loudly proclaiming that Gram was trapped, I
> >> had
> >>>>> to get up to,gop,too the car, because I was melting down, a little,
> >>>> knowing
> >>>>> how she felt about it, and as I got closer to the car, (we were on
> the
> >>>>> patio) my sister, Carol called,
> >>>>>
> >>>>> "Linda! Gramma is looking for you!" So I called back,
> >>>>>
> >>>>> "Bye, Gramma!" And she k picked everyone's socks off by calling back.
> >>>>>
> >>>>> "Good-bye!"
> >>>>>
> >>>>> We are here until we are not.
> >>>>>
> >>>>> And, you can always call me, You are delightful.
> >>>>>
> >>>>> ❤️❤️❤️❤️❤️
> >>>>>
> >>>>> LaLinda
> >>>>>
> >>>>>
> >>>>>
> >>>>>
> >>>>> On Fri, Feb 4, 2022 at 1:50 PM Laura via TheBanyanTree <
> >>>>> thebanyantree at lists.remsset.com> wrote:
> >>>>>
> >>>>>> Monique,
> >>>>>> I think it's good you're going to see someone who is not directly
> >>>>>> involved with your life, and not (hopefully) judgmental, to talk
> >> things
> >>>>>> out. And it's good you can type stuff out and post it here or to
> other
> >>>>>> lists. You can lay out everything you need get out, and just leave
> it
> >>>>>> there, no need to haul it back home with you. Sure, you can't get
> ALL
> >>>> of
> >>>>>> it out, but every little bit you can leave behind relieves the
> >>>> pressure.
> >>>>>>
> >>>>>> Writing things out is, for me, a bit like lancing a boil. I get to
> the
> >>>>>> point where things are festering inside, and if I don't let them
> out,
> >>>>>> they will explode all over my brain and make me even more nuts. Here
> >> in
> >>>>>> the Banyan Tree is where my boils get lanced. (ew. sorry about
> that. a
> >>>>>> little dish soap should get that out.) Yeah, that's what happened a
> >>>>>> couple days ago.
> >>>>>>
> >>>>>> I'm proud that you are writing it all out and sharing it. It's like
> >>>>>> Youngblood's posts, chronicling her experiences. How can anyone else
> >>>>>> experience what's happening to you if we don't hear it from you?
> Sure,
> >>>>>> we're not really experiencing them physically, but even if we can't
> >>>>>> empathize, we can sympathize with your physical and mental state,
> and
> >>>>>> maybe our perception of Parkinson's will change. It helps all of us
> to
> >>>>>> remember that you are not your condition, you are a PERSON with a
> >>>>>> condition. I hate it at the doctor's when a nurse says, "You've got
> a
> >>>>>> Parkinson's in room four, and a brain boil in room two." No, you
> >>>> fucking
> >>>>>> don't. You have two PEOPLE in those rooms who have those conditions.
> >>>>>> Grrrr.
> >>>>>>
> >>>>>> Future blind. I like that. Live today for today. Deal with today
> >>>> things,
> >>>>>> and don't worry about tomorrow things. That's how dogs live, one
> >> moment
> >>>>>> to the next, and on the whole they seem to be pretty happy. Be happy
> >>>>>> when you're happy, and be sad when you're sad. Don't worry about
> >>>>>> tomorrow, just deal with it when it gets here. And if you think
> about
> >>>>>> it, tomorrow never actually gets here. We go to sleep and when we
> wake
> >>>>>> up, it's today again! Tomorrow is still a whole day away.
> >>>>>>
> >>>>>> Anyway, I love you, too. Anytime you want to bitch at someone who
> >> won't
> >>>>>> judge, you know my email address.
> >>>>>>
> >>>>>> Laura
> >>>>>> wolfljsh at gmail.com
> >>>>>>
> >>>>>> On 2/3/2022 5:23:13 PM, "Monique Colve via TheBanyanTree"
> >>>>>> <thebanyantree at lists.remsset.com> wrote:
> >>>>>>
> >>>>>>> Yesterday I stopped putting off the inevitable and called the EAP
> at
> >>>> my
> >>>>>> husband's employer. Two doctors, my neurologist and my GP, had asked
> >> me
> >>>>> to
> >>>>>> start seeing a psychiatrist and/or a counselor, not because I'm a
> >>>> raving
> >>>>>> psychotic, but because they believe I will need help getting through
> >> my
> >>>>>> upcoming life phases, and neither of them wants me coming to them.
> Not
> >>>>> that
> >>>>>> I can blame them, their job is to keep my physical body in some sort
> >> of
> >>>>>> working order, not to listen to me whine.
> >>>>>>>
> >>>>>>> Calling EAP is no big deal, but Parkinson's has given me the
> >>>>>> predisposition to cry easily, and so I avoid it. There are triggers,
> >>>> and
> >>>>>> the last month has been difficult in more than one way. When Sam at
> >> EAP
> >>>>>> said I didn't have to tell him, but it would help if I did, I told
> him
> >>>> I
> >>>>>> have Parkinson's, and brain damage, and memory issues, and dementia
> is
> >>>>>> considered likely with time. I had to stop work and my life is
> >>>> changing.
> >>>>>>>
> >>>>>>> No big deal.
> >>>>>>>
> >>>>>>> Sam asked what kind of support I had, did I have anyone to talk to
> >>>> about
> >>>>>> this? I told him no, only my husband, and Andrew and I have agreed
> >> that
> >>>>>> talking to him about more than the basic medical facts is not
> >> conducive
> >>>>> to
> >>>>>> a healthy relationship. I'm enough of a challenge as is.
> >>>>>>>
> >>>>>>> I have no one to talk to. I really never have.
> >>>>>>>
> >>>>>>> Parkinson's messes with the brain, even if one escapes the dementia
> >>>> that
> >>>>>> often accompanies it. If we're lucky, it's a long slow decline that
> >> can
> >>>>>> wipe away who we are, or were, and it comes with grieving. I'm
> already
> >>>> on
> >>>>>> the way to being no one.
> >>>>>>>
> >>>>>>> Once I had a reputation in my field, small as it is. People knew
> me.
> >>>>>> Sometimes I was known for being a smartass, sometimes for knowing
> many
> >>>>>> things. On good days I can still be a smartass, but there are few
> >>>> people
> >>>>> to
> >>>>>> talk to. Physical therapists have been, other than my husband, my
> most
> >>>>> fun
> >>>>>> conversations for the past month.
> >>>>>>>
> >>>>>>> People with Parkinson's support groups have not been helpful - I
> will
> >>>>>> offer advice or support, but there's no back and forth, and the most
> >>>>>> frequent advice includes prayer, which is not my belief system. It's
> >>>> also
> >>>>>> very conservative, which I am not.
> >>>>>>>
> >>>>>>> I've been future blind most of my life, which means I can only see
> >>>>> today.
> >>>>>> I can't see a future that is any different. There are reasons that
> are
> >>>>> dark
> >>>>>> and deep, probably best explored with a mental health counselor.
> >>>>>>>
> >>>>>>> I love my life, despite my inability to connect with people, even
> >>>>> family,
> >>>>>> though my brother and I have made huge strides that no one else
> would
> >>>>>> notice. My life has changed a lot in the past few years, some of
> that
> >>>>>> pandemic related, mostly me related. I don't want any more change -
> I
> >>>>> used
> >>>>>> to welcome change, now I fear it.
> >>>>>>>
> >>>>>>>
> >>>>>>> Monique
> >>>>>>> Sent from my iPad
> >>>>>>>
> >>>>>>> Need to change your name, email address, or password? Or have you
> >>>>>> forgotten your password? Go here:
> >>>>>> http://lists.remsset.com/listinfo.cgi/thebanyantree-remsset.com
> >>>>>>
> >>>>>>
> >>>>>> Need to change your name, email address, or password? Or have you
> >>>>>> forgotten your password? Go here:
> >>>>>> http://lists.remsset.com/listinfo.cgi/thebanyantree-remsset.com
> >>>>>>
> >>>>>
> >>>>>
> >>>>> --
> >>>>>
> >>>>> ^v^
> >>>>> ,/'^-,/'^v-^v ^v^
> >>>>> v^\/ ^-,-^ ^,-v^
> >>>>> ^v '-^ ^-, ^v
> >>>>> v^v^ v^ v^ v ^v^
> >>>>> { { \ \// } }
> >>>>> } } |``| { {
> >>>>> { { / / \ \ } } ________________( )_______
> >>>>> ---
> >>>>> ----
> >>>>>
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> >>>
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> >>>
> >>> --
> >>>
> >>> ^v^
> >>> ,/'^-,/'^v-^v ^v^
> >>> v^\/ ^-,-^ ^,-v^
> >>> ^v '-^ ^-, ^v
> >>> v^v^ v^ v^ v ^v^
> >>> { { \ \// } }
> >>> } } |``| { {
> >>> { { / / \ \ } } ________________( )_______
> >>> ---
> >>> ----
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