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Peasuep, it might help you (and me) if you open your own thread, with a discussion or a question. Then you wouldn't be posting 'all over the place'. When people post on the general threads in lots of places, I get confused too!
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I agree, Margaret! I’m having Jeopardy problems, (too far into the narrative to post, coherently, in the form of a question!) I’ll try to focus!
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(((((Way)))) I'm sorry. This just goes in circles, doesn't it? One day she will be ill or injured enough that she can't go home. Until then it is her decision, as she says. Obviously she has conned the hospital sw. I hope dh made some headway with her. I hate that the relatives are putting pressure on dh and you to "do the right thing". As if you wouldn't, if you could.

Let us know how it works out. Mil will spin all the tales she needs to, to to get her own way. It may be her downfall.

How are you holding up?

((((Psue)))). Big learning curve! So hard on all of you. At least you have some meds now. Next step is to get them administered appropriately. It's such a big change for both you and dh. Good for you getting the meeting postponed. That was a very good move. I honestly can't see that it would have been productive. Everyone has anxieties to deal with. Dh needs time to adjust to his new environment and for the staff to figure out what is best for him. As you say, the combination of meds is tricky.

How did it work out for dh last night? Are there still thoughts of moving him to MC?

Did you get any sleep?
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Golden, it is not going well at all. I do believe the fast acting drug they’ve given DH for the past 2 nights is helping ME! My silly, hopeful mind has convinced itself that it is helping him so I have been able to sleep without nearly as much worry for 2 nights in a row. It’s ridiculous, but I’ll take whatever I can get.

During the day it’s a different story. It will be another week or two before the slow acting drug kicks in. When I visit he can’t sit still. I think I can somewhat understand what he’s feeling. There was a time when my thyroid went out of whack and I felt like I was being chased by something unseen, 24 hours a day. It was nice to be thin for a year but the constant internal buzzing and paranoia was terrible. DH acts as if he feels the same way but without the ability to understand why.
I do think memory care is looming in the near future but we all need to give the drugs time to work. I hope the staff can be patient. It’s very difficult to base decisions on what is best for DH when I don’t really know what that is.
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Peasuep - I noticed with some of the residents at my mom's nursing home it was very evident when they had their medications altered because they would be either asleep or in a zombie like state, but none of them remained that way for long (I think it just takes time for the body to become adjusted)
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We need a “ scream in your pillow thread “ , the whine thread isn’t enough .
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I second that, Way.
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Cwillie, that’s interesting. DH seemed less irritated and agitated this afternoon but was still in his pjs and with his leather belt on, on the outside.
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Psue - not ridiculous at all. Whatever works. What dh is dressed in is much less important than how he is feeling/behaving.

I get the thyroid analogue. I have had high thyroid too and it's just awful. Wouldn't wish it on anyone.

Indeed, it will take time for the drugs to kick in and for everyone to get a sense of where dh is at.

cw - that's helpful

way - Oh dear! Are you home yet?. Don't tear your hair out. it takes too long to grow back in. I gather mil's crazy choices are still in force.
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Golden ,

We are home . MIL tried again to weasel out of going to rehab . Thankfully the doc at the hospital told her if she didn’t go to rehab she would have to sign AMA and that no nurse or therapy or any home health would come to the house.
Fielding phone calls from her two siblings . The one is ridiculous , he wants us to prevent her falls by getting an aide at home ( which MIL will fire ).

MIL will think that rehab is going to make her “ better “ , she will ditch the walker when she goes home ……
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Way - I am glad you are home. Sounds like more of the same. How frustrating!!! Aides at her home won't stop her falling anyway. Glad the dr put his foot down re rehab. She will go her merry way till she can't. Nothing much you can do except be prepared for the next one. At some point she will be an unsafe discharge to her home. No one knows when. I'm sorry you have to deal with her sibs and another session of this.

Psue - If you can, enjoy a little relax time. You have earned it.
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Way and Psue,
So sorry to read about all of this.
Way, so true no aide will prevent falls.
Psue, hope you get some rest, must be exhausting week.
I am for scream in my pillow thread as well.
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Welcome home, Nacy! Was it everything you hoped it would be?
I imagine it takes a bit to get your land-legs.
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Way, this jumping from crisis to crisis can’t be good for you and your husband. I wish there was a solution so you could get some peace.

Eva, it’s so good to ‘hear your voice’. I hope you’ve hit a calm patch.

Golden, from your lips to Gods ears! Everything else in my life has been neglected but when a do manage a quiet hour I can’t focus. This is an unnatural state of mind for me and very uncomfortable.
I love reading your posts - you are so grounded.
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Peasuep .

The solution is to run !!! 🏃🏃‍♀️🏃‍♂️Even if for a long weekend getaway when possible . We are planning on it for June . But who knows if it will need to be canceled 🤷‍♀️🤷‍♀️.

Hang in there . You are doing a great job !!
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Way and Peas......our thoughts are with you. Sending strength and good thoughts and caring.
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Peasuep and Way: Sending virtual hugs. 💜
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Psue,
No calm patch for me. Rather opposite.
It is frustrating that no doctor has any answers or solutions. Hubby on hydromorphone for over a month and even with that in pain all the time. I don’t know what else they would give him if this drug stops working. It looks like it.
Hope it will get better for you day by day as hubby adjusts somewhat.
Nacy,
Good to hear that you are back and enjoyed your cruise.
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Sounds like an adventure Nacy! This was a good "trial run"! and I think the Alaskan cruise will be a lot different bc everyone is there for the natural beauty and not the ports etc. so it will be more mellow. You guys did great by the sounds of it, I know you were nervous. I've never been on a cruise.

Funny story the guy who delivered my mom's oxygen commented it looked like a Mexican drug store in their place now I get the imagery. Yo can I get some antibiotics? 😂
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@evamar, the current AARP magazine has an absolute NIGHTMARE story about a woman with excruciating nerve pain, one leg giving out and falling, numbness to awful pain, the actually losing continence of both bowel and bladder, and in W/C and going to doctor after doctor after doctor and even to out of town experts with MRIs and everything. And no answer. Just a nightmare of a story. The medical mystery WAS solved, two surgeries late she can walk again, and they didn't mention much about bowel and bladder. Came down to crushed and impinged nerves kind of "hidden" from the MRI by huge muscles of the thigh. But the pain, the debility, the lack of answers; quite honestly so frightening.
My own daughter, early 60s, dealing with something in hip now, missed for THREE YEARS because they kept telling her "referred" pain from bulging discs in her back. Turns out she had torn tendons and muscles, torn from a fall three years ago right from their anchor. Now a bit better after a "tenex" procedure I have never heard of.
But these things get missed, misdiagnosed, and with your hubby you have the added awful problem in that he cannot completely be a good subjective "reporter" of his symptoms.
So hard, these things. So many things just "missed". They say A.I. is better at getting a real diagnosis when the symptoms are fed in than our own docs with an MRI to read. Yikes.
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Why oh why do people still go to work when they are sick and contagious? I'm not talking about workers that have no other choice because they need the money or have employers that insist, that I understand, but what's wrong with the people who seem to think they are the exception to the rule?
are you masking? no
are you isolating? well I hardly ever leave my desk
Are you sanitizing everything you touch? uhm...
I don't care if influenza, covid or some random enteric virus isn't usually listed as the direct cause of death in nursing homes, if my fragile loved one gets sick and dies shortly after recovering I'm sure as H____ gonna connect those dots.
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I don't know what to do, guys, and I know you certainly don't know what I should do, either, but let me type some things out and see if I gain some clarity myself and get input from this wise group (you really are a bunch of wise souls, seriously).

I have 3 classes remaining in my MS program. It's *time* to transition to working in the field. The weird thing keeping that from happening is my current stability and comfort levels. I mostly like my job, my coworkers, my work, my day-to-day schedule of 11am-7pm. It's all so stable and cushy. It's comforting to stay where I am, I suppose.

I also have persistent CFS symptoms where I may be exhausted for days, and sometimes it can be weeks. This is concerning to me, when starting a new routine and new work duties. My current employer knows that I work very hard WHEN I can. They're gracious about allowing me a day off when needed. And trying to navigate my limitations in a new line of work is really intimidating.

However, surely I can cultivate all the positive rapport I experience in my current job again in a new line of work, right? In the long term, I want to work in behavioral services. I chose the right path; I'm just getting lazy (I'm scared, I think) about the change because IT'S HERE. There are so many opportunities around where I live. I don't lack options.

I have a meeting with a therapist on Monday to try to work through this moment in my life. I feel so fortunate to have these options, "spoiled for choice." But truly, I'm very scared, too. I have to meet new people, get out there, and get to work in a new field. And I'm scared. Of what, exactly? It's just all of it.

Thanks for humoring me... 😅 I typed this up on AC here instead of grinding away at my Implementing Procedures for Behavior Change class material.
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Ali, I so get what you are saying and I want to encourage you to remember that anything that makes us feel that much feeling, it's a good thing. That's how growth happens, remember the physical growing pains?

Personally, I feel like that feeling is what adrenaline junkies pursue, every bit of us is alive with vigilance because we are out of our comfort zone and it is scary but, it is exciting because we are growing.

You got this!
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Eva, I have a question: What is your hubs diagnosis? What is the cause of pain? I apologize, I'm not familiar with your situation and noticed there's not any info in your profile about it. I'm curious about the hydromorphone use and why it's not working for hubs pain.
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((((((ali))))) - I can relate re the CFS and the fear of doing new things. I've was never cautious or afraid of taking on new things pre CFS/FM. Now I am, due to the uncertainty of my pain and energy levels, and my possible lack of sleep and or brain fog on a day that requires me to be sharp and alert. For several years I answered any invitation out to "I'd like to but we'll have to see how I am that day".

So I understand.

I did go back to work after a couple of years off at the beginning of the CFS/FM and was able to manage, in part due to the fact we had flex time. We had to be in class to teach and available at work for our 5 office hours a week and any meetings we were called to. Apart from that we could work at home.

I appreciate what you are saying about the flexibility of your present work and the support you get.

Also, I agree that you can likely accomplish that again. The world is much more accepting of "variations" of many kinds than it was. That includes health issues. People with different needs can work due to accommodations that are made for them.

Then there's the apprehension of something big and new which can affect any of us. That involves loss of the comfort of the "known" we have been accustomed to and taking a leap of faith into the unknown. I am totally sure you can manage that!

Goodness, girl. Look how far you have come! Your health issues haven't held you back from achieving academic excellence!!! All power to you. I know you will figure this out.
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Ali,
Working in the field is the most exciting time of all, in my experience.

Who you "intern" with may want to hire you, which is a compliment and recognition of your value and work ethic.

[If that (Like an internship?) is what you are referencing is the step you are taking.]

Sign yourself up, jump in.

See what the hours are, try it.
And try not to lead with needing accommodations.
You will be doing so well, they might not notice you needed time off. imo.
And you might not either.
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My best friend's ordeal with glioblastoma ended last night. I'm just heartbroken and can't believe that she is gone. There is a gigantic hole in my life that can never be filled.

I also can't help but be angry that my 96 y/o father with his plethora of health issues outlived her. Life is not fair.
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Hothouses, I am so sorry for your loss. May The Lord give you strength, peace, comfort and guidance during this difficult time.
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Hothouse Flower. No, life is not fair. I am so sorry for this loss.
I recommend Roger Rosenblatt's book on his grief over the loss of his daughter, a doctor, at her young age of 38, leaving two babies and a hubby. The book is titled Kayak Morning and is a beautiful meditation on all the thought of what we go through when there is a loss. Rosenblatt, a true believer, said the afternoon he was informed of her sudden death "God, that's the LAST prayer you ever get from me", so you can imagine the impact of the loss of this apparently marvelous child.
Life isn't fair. We all know that. But even "fair losses" can devastate us.
The HOLE that is left by someone we NEED in our life is a perfect description. Nothing says it quite so well.
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Sorry Hothouse,

I agree . Life isn’t fair . Young people die who shouldn’t . And old people suffer too long . It all just stinks .
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