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My new journey with the big C   Quit Stories and Journals

Started 11/11/16 by Rich (lexx0); 226212 views.
Triff (breathefree)

From: Triff (breathefree)

6/23/19

Rich interesting word there.I would think it was something to do with time or something from your original treatment.I do hope it just means warts or something boring.

I do feel for you and know that bike really saves your sanity.

I am coming out of a huge mess etc caused by a new med.I have reduced it and I can now think although the results of the Morphine like med had left me with one of the common problems.poop I made it through another night and by asking myself at an earlier time and having meds it is averting the exacerbation some what.

Linda is so lucky to have such a devoted hubby/carer and I am better without mine now.I do miss my wee companion though and just talk to myself now.

Family moves out in two weeks

I wonder what those cronos do?

Triff

Rich (lexx0)

From: Rich (lexx0)

6/23/19

Aye, I misspelled it, its Crohns, sheesh.  Yah I have had some symptoms without knowing, I associated with chemo/ etc.

Yeap, bike keeps me sane. Linda would like her independence now. Not thinking right of course. Lots of anger from the doctor refusing to replace her shoulder, too high a risk for infection and too many hours for the operation. They would rather do half way and just remove the rubbing pain part. I don't blame her and whatever she wants I try to accommodate. 

Yes, sweetie, I'm so sorry meds are your problem.  Linda's were as well.  I don't what we can do past research and you still can't reject one out of hand because it fails on others.  Oh to be young again eh?  The only way I can look at any of this its another day, and I do know what you mean 'by another night'!

What are you going to do when your help moves out? I have a friend in TN that has end stages of Crohns' and his family doesn't do any more than they have to. Sad. He spent his last 10 good years caring for his crazy mother with dementia.  All we can do is hope for the best next day and hope insurance sends someone to look after you once in a while.  Its also another day that I think we both agree, that Steven would be glad to of had.

I'm here if you need to talk as always.  Just don't text me on the bike ;D

Rich

Triff (breathefree)

From: Triff (breathefree)

7/2/19

I have just been told I may be able to have sleep studies done at home.I wonder how that will work and if I can still use my rescue methods during it or perhaps wont sleep.I thin you did those didnt you?Any info is good

Triff

Rich (lexx0)

From: Rich (lexx0)

7/2/19

Sorry Triff, I did have a sleep study ordered, but I never followed through with it. At the time I was all itchy from a lifetime of skin rash that I didn't want to deal with it then.  I know I have sleep issues and should get this done as well.  If they can do this at home, great.  Your body will still have that basic instinct to jump up outta sleep and 'save yourself'.  I've had countless incidents where I've literally jumped out of bed and stomped around the room to get rid of a panic.

Try not to fight the sleep.  That is how they determine if your breathing or heart rate cease while your asleep or going under. I get a crazy sensation sometimes of when falling asleep a panic that feels like falling off a cliff or worse.  I wish the best for you.  I too will do this someday soon.

Rich

Triff (breathefree)

From: Triff (breathefree)

7/2/19

Thnaks Rich for describing the normalacy of it all.I must have gone onto my back and woke with the screaming desire to jump out of bed too.I lay with my rescue inhaler thren moved tothe meds beside the bed to slow it all down.I bet I would rip all the stuff off in panic when you get tothat cant breathe moment.Two hours later I had some control but today I am zonked. I will see what exactly they want before I worry or give up without trying.being on my own makes it worse so perhaps find someone to be here just incase

Triff (breathefree)

From: Triff (breathefree)

7/8/19

Just checking in to see what July brings us all.For me an amazing little step forward and at the same time loss of the support I did have.Its very cold and I am doing my best to stay warm.I miss my wee fluffy companion .

Triff

Rich (lexx0)

From: Rich (lexx0)

7/9/19

Oh so your down under in winter time ;(.  We're having a 90F heat spell with thunderstorms daily.  I ride between cloud bursts, although not successfully.  Best days are always 'hospital visit' days and after 4hrs there when I get home with takeout, the rain starts 15 mins after eating ;p

Aye, I can't imagine losing your family AND your furry baby too.  Hope things work out for you. The better you get I'm hoping the lessor of the other panic style attacks you will get ;(  Keep in touch.  I'm still waiting over a week just o make a gastro appt, they won't return my call and my doc leaves in 3 weeks for another hospital.

Rich

Triff (breathefree)

From: Triff (breathefree)

7/17/19

Hi one thing I miss is having the fire lit for me in the morning.Its quite cold and frosty too.

I got a letter today to say my test equipment will be sent 1st week of August so I will be good and use it in the hope it can help me get more treatment etc to improve thing for me.

I bet now its great riding the breeze in summer for you.My thoughts to you both and I wonder if your family has departed too?

Triff

Rich (lexx0)

From: Rich (lexx0)

7/22/19

Good news to hear Triff.  I hope the equipment gets you somewhere.  Linda seems to be getting better although she will never get a shoulder replacement, the surgeon says she will not be able to tolerate metal and plastic as those attract and hold things that will cause infections which would lead to life threatening things and prob loss of limb. The only recourse is another 3 months of pain meds. At least the last shot seemed to give her a lot less pain.  Still, she grips about not being able to drive.

Prob here lately is its 90F or higher and too hot to ride for me, or it rains all day like today.  An hour in that heat and I start to get faint.  My arms are burnt from the sun and I have a nice white watch spot ;D  I havent' been wearing gloves this summer or my hands would be white too ;p  Its raining now, I may go out when it slows down to a sprinkle though.  I am thinking about going to the dealer and trading up to a bigger bike soon though. On the interstate mine shakes at 60mph or higher.  I want to go further than tripping around town.

My full physical is Aug 1st.  Find out how they are going to treat Crohns then.  Always something anymore. Damn when I smoked I felt great, now just blah, but guess I'm very lucky to be 2 years post C surgery and still free of that.

Love you sweetie, hope you get better really fast.

Rich

Triff (breathefree)

From: Triff (breathefree)

7/26/19

Oh Rich that sounds positive with Linda feeling better after pain meds and last shot gave relief.Just having a lowering of pain would be enough to give her a little energy or feel better.I am sorry she cant drive but being alive and feeling a wee bit better is wonderful for all of you.

I hate not driving but choose not to due to the meds I may take during attacks.Once it gets to warmer weather perhaps things will change.I give thanks each day for just being here and the only thing at the moment was the continual cold and fog.Today I am grateful it was sunny for a few hours.

Feeling blah is funny really isnt it?You would think you would be so proud of the achievement of the life you have and all the work those doctors have done but probably your letterbox is still full of payments for your care.

As an outsider I sure feel proud of both of you battlers who somehow have navigated such a terrible and painful journey against the big C .You are survivors and you deserve a medal for all you have done even before you had healed.

Boy now that if you

I am expecting my testing first week in August.Lets see if it provides information enough to get me more help.

Triff

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