Northwind's health updates

Northwind

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I think the drug is new and still being researched to some degree. I agree, $6000 is nuts on so many levels.

I've been told I'm strong and I suppose I am. Yet, really what other choice do I have? Just as you @Kimmio Laughterlove have to deal with the mobility issues you face, I have to face this. The alternative would only hurt me. I have to believe that the professionals around me know their stuff. Thankfully their actions support that. I have to follow the treatment plans they create. I know the plans are based on good science and research.

I had to think about my response to being called strong again. I realized that sometimes it sounds like the person is saying "I'm glad it's not me" . That's not what I hear when you say it for the record Kimmio.

I realize it's hard to know what to say and saying someone is strong is one of the better options. :)
 
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I really meant that you’ve been strong. You’ve come across like you’ve been living your life like it was a bump in the road to get past - with the occasional frustrations - but you’ve just pressed on. I really do admire it.
 

Northwind

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I do realize that Kimmio and I know most people in my life express it that way. I have been living my life as if this is a phase. It's not like getting a course of antibiotics to kill the bacteria though. I think that's hitting me more now. I'll be living with this in some way for the rest of my life. That's an adjustment.
 

PilgrimsProgress

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Whenever I read your posts here and on Facebook I am a pupil and you are my teacher.

Serious illness -how to travel with it physically, psychologically and spiritually -becomes a real concern as I age.
(I suspect this is why I and my friends of a similar age are more anxiety prone than in our youth).

Apart from the illness itself there is also the issues of not being in control, of having to put your trust in others -whilst all the time living with an awareness of uncertainty.
Your ability to face it all honestly and openly is truly admirable.

I'm now putting up my hand in class, teacher........
"What helps you the most, and, conversely, what hinders you most?"

(Just wish you lived across the street, and you would get a hug every day from me!) :love:
 

Northwind

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Oh @PilgrimsProgress I would love a real time, in person hug from you. :love:

I think one thing that helps is matter of fact, kind support. Pitying is not good. Knowing I can ask for help is better than having it dumped on me too. I'm finding it helpful to express what's going on in my life in print. It helps to know there are supportive friends out there listening.

I realize that having foot surgery ten years ago has helped me a lot with this. I had to learn to ask for and accept help then. I've gotten a bit better at that in the intervening years as well. I suppose that's another advantage to aging, knowing when to let go and accept.

Speaking of which a huge helpful thing was learning about Radical Acceptance through work. It has helped me accept what gets thrown at me so I can respond. I don't have to like it. Having excellent doctors who I trust helps tons.
 

PilgrimsProgress

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I'm finding it helpful to express what's going on in my life in print
I understand that........
I have a tendency to be overwhelmed by my feelings, so writing really helps me create a little distance, and thus give me a chance to see things more objectively. (It's a bit like being on the ceiling and looking down at me and my life, if that makes sense?)
 

Seeler

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I think that's hitting me more now. I'll be living with this in some way for the rest of my life. That's an adjustment.

Northwind, I can relate to this. Seelergirl used to say, 'this is the new reality.' She recognized that due to the chemo, radiation, etc., she would never be the same physically as she had been before her cancer.
Although I have a different health problem, it is hard but I realize that this is it – for life. I'm not going to get better; I just have to accept what is.
Always before if I had to put something off for health reasons I could tell myself, 'next year', or 'when I get better', 'when I build up my strength'.
Now I realize that if I can't do something now (a long hike, take up bicycling again, going cross-country skiing) I'm not going to be doing it ever again. So I am learning to live in the present, and keep doing the things I enjoy as long as I can, knowing that I will not 'get better.'
 

Luce NDs

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If heaven is a state of mind ... is the ABBA't in heaven ... enough to get one moving and enjoy the Moor Tal Gift?

In situations of gravitas ... should one return from it with a learning experience ARC Anis? The ruling concern is beyond us ... thus the ability to play with the word ... that's god ... all in the scripting! Often subtle and partisan compared to the pious ...

Communicative dis ease ... when you sense that something isn't rite but only Toby experience ... thus pas Zion thoughts!

Gotta love the deeps ...
 

Northwind

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I understand that........
I have a tendency to be overwhelmed by my feelings, so writing really helps me create a little distance, and thus give me a chance to see things more objectively. (It's a bit like being on the ceiling and looking down at me and my life, if that makes sense?)
That totally makes sense. In fact, since therapies recommend writing as a way to put distance between ourselves and the problem.

I find I can often express myself better in writing, especially for difficult things. I'm an introvert who needs to percolate when faced with new ideas. Writing helps organize my sometimes rambling thoughts. You would think I'd be a regular journal writer. I'm not. That takes too much discipline apparently. I have found it helpful for talking with the doctors. If I've written things out somewhere, I do better verbally.
 

Northwind

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I understand @Seeler I may get better in some ways. I have more energy. I get get more tired than the activity warrants. Still, I will live knowing that can change and that cancer is always lurking. I will need to adapt to regular doctor's appointments, medications, scans and whatever. The expensivemedication I'll be getting will mean that we can go no more than two months between refills. It looks like next summer will be a two trip at the most. We will adapt even though it wasn't what we'd planned. I guess life is about adapting. There also comes a time when our mortality smacks us in the face. That is also an adjustment.
 

PilgrimsProgress

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I guess life is about adapting
The ability to adapt is perhaps life's greatest skill. (Says the woman who ran home at recess on her first day at school!)

Usually I express all my fears and get very upset and then I seem to be in a better position to accept necessary change. I've learnt that if I try and be mature about things and accepting without going through the overwhelmed with fear and angst stage it just takes longer.
 

KayTheCurler

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I do realize that Kimmio and I know most people in my life express it that way. I have been living my life as if this is a phase. It's not like getting a course of antibiotics to kill the bacteria though. I think that's hitting me more now. I'll be living with this in some way for the rest of my life. That's an adjustment.
Indeed this isn't just a wee bump in your trip through life. I see you as a person who has adjusted to new situations many times before. I am confident that you will deal with this to the best of abilities (and you are allowed to 'not be dealing with it well' for periods of time if that is how it plays out). It sounds like you have people who will 'be there for you' to the best of their abilities too. GO Northwind.
 

Northwind

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Thanks @KayTheCurler. Yes, I've had a few meltdowns since my diagnosis. I'm sure I'll have more. We went to church for the first time in awhile last week. I couldn't sing "Draw The Circle Wide" because I became emotional. The congregation holds hands during the last hymn. That didn't help. I just listened to the singing and held the hands around me while I composed myself.

We will be returning to our winter park this week. We made some excellent friends there who are good supports. I suspect someone will bring a casserole or something. We're so glad we retired when we did. That makes this our biggest stressor.

I have gotten through rough things in the past, and am now more resilient. Having the post-retirement rest helped with that. I'll manage here even if it's tough.
 
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