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cakelady

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damn I don't want to be
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Not new, just back after a loooooong remission
Jul 31^st, 2010 at 8:59pm

hey all, it's cakelady.

sort of thought (ok, hoped/prayed) that it wouldn't happen again. I had a scare of shadowing in 07 but it never developed. No such luck this time.

So much has changed. I have lost my one supporter. I never really shared this with anyone else. It always made me feel like a freak. Except here, of course.

No one really understands this except us. You try to explain but words can't begin to describe the horror that we dance with.

I'm not really scared. I was at first but I know I will get past this once again. Really just very very pissed. and alone.

For me. I'm so glad you are all still here. For you, I hate it.

I'll try to take some time to catch up with everyone.

Just wondering, do we have a presence on FB or Twitter?

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Pain is inevitable, misery is not.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Not new, just back after a loooooong remission Reply #1 - Jul 31^st, 2010 at 9:22pm Quote: No one really understands this except us. There are a few.
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JustNotRight

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Re: Not new, just back after a loooooong remission
Reply #2 - Jul 31^st, 2010 at 10:34pm

Welcome back cakelady !

I know what it's like to lose a supporter it sucks, but if they aren't strong enough to be there for you, then they aren't good enough for you to begin with.

I am sorry you had to seek us out again, but glad you did no one wants to be alone with this thing we call CH.

Read all you can and make sure to check out the O2 page.

Here when you need us and wishing you many PF days.

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cakelady CH.com Junior Offline damn I don't want to be here Posts: 73 x0\|Nashville\|USA\|\|0\|0\| Gender:	Re: Not new, just back after a loooooong remission Reply #3 - Jul 31^st, 2010 at 10:42pm Oh sorry. No Ginger, he passed away. Very familiar with O2, big fan. I have been dancing this dance for 38 years, so I'm not really a n00b anymore.
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JustNotRight

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Re: Not new, just back after a loooooong remission
Reply #4 - Jul 31^st, 2010 at 10:44pm

cakelady wrote on Jul 31^st, 2010 at 10:42pm:

Oh sorry. No Ginger, he passed away.

Very familiar with O2, big fan.
I have been dancing this dance for 38 years, so I'm not really a n00b anymore.

Well I feel like a noob now Grin

My sincere apologies and condolences for your loss and for my foot in mouth disease Wink

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Not new, just back after a loooooong remission Reply #5 - Jul 31^st, 2010 at 11:00pm You're not alone anymore. Joe
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bejeeber

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Re: Not new, just back after a loooooong remission
Reply #6 - Jul 31^st, 2010 at 11:05pm

38 years - well you got 8 years on me! Shocked

I too have benefited from longer and longer remissions as the decades fling by, and I've also had the shadowing scares, and hopes that I've seen the last. The 'ol beast-a-roni has other ideas though of course. Angry

Last I heard, there isn't a significant presence on FB or twitter yet.

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« Last Edit: Jul 31^st, 2010 at 11:07pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Lettucehead CH.com Old Timer Offline I am very blessed... Posts: 293 Iowa Gender:	Re: Not new, just back after a loooooong remission Reply #7 - Aug 1^st, 2010 at 1:32am Welcome cakelady! please, welcome always - no, you are not alone. We understand what you're going through...
Back to top	Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH IP Logged

cakelady

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Re: Not new, just back after a loooooong remission
Reply #8 - Aug 1^st, 2010 at 9:54am

It's another morning after another night in hell.

I had no idea how hard this would be with out a supporter. All of you people out there that take care of one of us...
you may not think you do much, but let me tell you, you are invaluable. things as simple as putting on the coffee and putting the cup in our hand, changing the ice pack or closing the blinds. You never know how important those thing are until they are gone.

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QnHeartMM

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Re: Not new, just back after a loooooong remission
Reply #9 - Aug 1^st, 2010 at 2:45pm

Hi Cakelady - although you're no rookie to this, I don't believe we've "met". At any rate, welcome back. I'm a supporter for my husband Guiseppi and one of many who's here to support all sufferers. Although we can't bring you your coffee we're sure here for you.

So depending on he last time you've done the dance, maybe there's some new things to help. Redbull (or your energy drink of choice), melatonin to help the night clusters, and then perhaps some preventatives as well.

Hope you'll find something here to help you.

Christy

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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: Not new, just back after a loooooong remission Reply #10 - Aug 1^st, 2010 at 3:30pm cakelady wrote on Jul 31^st, 2010 at 10:42pm: Oh sorry. Very familiar with O2, big fan. At what flow rate and mask type?
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bejeeber

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Re: Not new, just back after a loooooong remission
Reply #11 - Aug 1^st, 2010 at 5:52pm

I'm also curious about your flow rate, mask, and other stuff you're doing to abort/prevent attacks Cakelady.

We just can't help ourselves - when we see someone who sounds like they're enduring full blown attacks, we have to know whether there are some new things'n stuff we can advise about. Cool

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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cakelady

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damn I don't want to be
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Re: Not new, just back after a loooooong remission
Reply #12 - Aug 2^nd, 2010 at 9:40am

Well, I haven't been to see the Doc yet. I'm trying to cope on my own. doing pretty well really. finally got the dosing right on the melatonin last night. Yeah. managing mostly with ice, coffee and melatioin for the nights.

I do have a doc that is wonderful just trying to avoid the expense.
I don't remember the rate of O2 I used to use but it was pretty high and yes I had a rebreather mask. I do remember at time that I could go through two of the large tanks in a weekend.

I think I am almost in denial. I have had such a long remission that I am hoping that this is an anomaly and will diminish quickly. yeah, yeah, I know, foolish thinking but that is where I am.

On another note.
I have danced this dance, like I said for 38 years. Through all life stages from teen, the birth of 2 kiddos, and other things. So if any one need advice on dealing through those stages feel free to reach out.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Not new, just back after a loooooong remission Reply #13 - Aug 2^nd, 2010 at 9:43am When you get a chance review the oxygen info link on the left. We have several oxygen guru's on the board who have made significant changes to HOW we use the 02. These changes have dramatically reduced abort times for many, certainly worth a quick read! Joe
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Not new, just back after a loooooong remission Reply #14 - Aug 2^nd, 2010 at 9:44am Quote: yes I had a rebreather mask If you get O2 again, be sure to ask for a non-rebreather mask. You may have had the right kind way back when, but if you don't ask for the right piece of equipment, you may get exactly what you ask for. And you will be disappointed.
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wimsey1

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Re: Not new, just back after a loooooong remission
Reply #15 - Aug 3^rd, 2010 at 7:57am

cakelady wrote on Aug 2^nd, 2010 at 9:40am:

Well, I haven't been to see the Doc yet. I'm trying to cope on my own. doing pretty well really. finally got the dosing right on the melatonin last night. Yeah. managing mostly with ice, coffee and melatioin for the nights.

Hi Cakelady, and welcome back. I've been dancin' for 23 years, past 3 years chronic, and like you said on another post nothing seemed to work. Until I came here and read everything everyone said. I made a list of all meds I hadn't tried, read about them, and made a list of what I would try next. I was in too much pain to be in denial, although I understand wanting it to not be as bad as it was. "Managing" is just getting by, and with a whole range of stuff (like taurine plus caffeine) it's possible you could find some new tricks to trip the beast. Don't just manage it, slay it! Or take that warrior attitude at any rate. Good luck with this, and God bless! lance

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1haunted1 ,-(

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Re: Not new, just back after a loooooong remission
Reply #16 - Aug 3^rd, 2010 at 2:10pm

Hello cakelady.

I found your posts. Glad to indeed.

YOU SAID:

I had no idea how hard this would be with out a supporter. All of you people out there that take care of one of us...
you may not think you do much, but let me tell you, you are invaluable. things as simple as putting on the coffee and putting the cup in our hand, changing the ice pack or closing the blinds. You never know how important those thing are until they are gone.
^^^^ I PASTED THAT THERE FROM A PREVIOUS POST OF YOURS NOT THE OUTCOME I WAS EXPECTING^^^^

So so so true.

My wife helps me through them most times, I avoid at all costs waking her up because she would and she has. But she has to get up and go to work also. It is a beautiful thing, these wonderful selfless people. So I truly am deeply saddened for your loss.

I am not a cat man, but my wife has a cat in our home. It dont bother me much. But sometimes in the middle of the night or when know one is home and im deeply focused on the pain, this cat comes out to check on me,sometimes she actually helps me through it, just because I know she knows.
I found that cat to be a true friend especially when things look real dark.

I hope and pray this can be of some use to you cakelady

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« Last Edit: Aug 3^rd, 2010 at 2:13pm by 1haunted1 ,-( »

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