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Izzy

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It's killing me as much as it isn't him...
Oct 8^th, 2008 at 2:27pm

Excerpt from his pain journal: (in which he rants & I write...this is something we do as part of trying to keep sane through it) I don't know who he rants TO, he just rants because of the pain...at least I know when he's mad, he's okay...it's when he's curled up on the floor slamming his face into the carpet that I get worried...

"Here I am at 3 in the morning, lying propped in bed with a frozen donut on my head. Why the h* do we have frozen donuts?? It's amazing the frozen crap we have in that thing! I can just see it now: the thing inside my head, laughing at my attempts to depossess myself of it's claws. "A donut?" it shrieks. TAKE THAT! Oh My God, my brain is swallowing itself...at least this time I won't fall asleep with melted burger on my head after declaring "I will not put hamburgers on my face!" when that was all we had. Why don't we buy ice packs you say? Because I'm a cheap bastard, that's why! Frozen anything works just as good...and it's always there, ready for the attack of the hell breed thing in my skull that lives in the world of my living nightmares, reaching it's death sentence to the very end of my limits, taking it's sweet time killing me slowly without killing me at all. I WANT MY LIFE BACK!!! I WANT MY LIFE BACK!!! I WANT MY LIFE BACK!!! Do we have any bacon? This is melting."

So...we had a good laugh this morning, before the mid-morning one hit. This is only his second cycle & yesterday he got two of them, today he got 3...it's like the only thing we can do is laugh about it because otherwise the depression hits so hard we just sit & stare at each other, declining invitations to go out because we're just too exhausted to move beyond the confines of safety nets we've built up: coffee always ready to go, frozen cloths at the ready, Max everywhere in the house so it's always in reach (it's helping but only so much...it just makes it so he doesn't throw himself around.), ice water in the fridge, black out curtains in the bedroom, blankets & pillows & every cushion we own on the floor of it for the "thrashing ground" as we call it...sick farmer's joke I think. Threshing/thrashing. I'm going to go sleep a few hours...maybe I can squeeze in a coffee with a friend before I'm needed back here again...hopefully the shadows stave off for a few more hours...I can't beleive he's up to this many a day. When are we supposed to sleep? When are we supposed to LIVE? I miss my friends, my work, my LIFE. I miss our dates & our walks & our comfortable routine. This monster is taking over us. I wish I could kill it as much as it isn't killing him. I wish I could stick it to the wall with knives & twist hot pokers in its eyes & pluck its innards out with a pitch fork & burn them so it can smell it's evilness dying. So it can suffer too. I wish it would leave us alone!!!

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: It's killing me as much as it isn't him... Reply #1 - Oct 8^th, 2008 at 2:45pm Izzy, I know your husband is going to be o.k. when he has THAT kind of sense of humor about it all. That was funny. Tell him an ice pack is a lot less expensive than defrosted meat that you can't use for dinner.
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thebbz

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Re: It's killing me as much as it isn't him...
Reply #2 - Oct 8^th, 2008 at 2:55pm

I love a sense of humor. You have to have it. I know who he's talking to. He is cussing the demon bastard. Keep up the good work. Put a pad on the floor and bang the head on that. Linda has a nice headbangin pad on the wall in her closet.
That way your cut man can have the night off. Wink

Fight with all you have. There is no other choice.
all the best
the bb

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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: It's killing me as much as it isn't him... Reply #3 - Oct 8^th, 2008 at 6:19pm That's a great story Izzy. A sense of humor is important in fighting the beast. If I didn't laugh sometimes about some of the things that Phil has done, I'd have gone insane a long time ago. Wait a minute, I am crazy. Hugs, Jen
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Izzy CH.com Junior Offline Choose life. Posts: 70 Red Deer, AB, Canada Gender:	Re: It's killing me as much as it isn't him... Reply #4 - Oct 8^th, 2008 at 11:29pm Thanks everyone!
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Izzy

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Re: It's killing me as much as it isn't him...
Reply #5 - Oct 9^th, 2008 at 1:33pm

Pain

Tears rip the night
Reinforcing the stress of the day,
And shocked into the wakefullness
My mind fails.

Pain

Rocks the soul
Reliving pent up angers,
And weaving into the helplessness
My heart screams.

Pain

Thinking doesn't stop time
Rewind the mind,
And in letting tears fall
My hands find something to do.

Pain

Savage, Surreal,
Stuck between abysmal realities
By the ticking of the clock
I wait - pained.

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: It's killing me as much as it isn't him... Reply #6 - Oct 10^th, 2008 at 11:24pm Wow Izzy!!!! You're a wonderful poet. Thanks for sharing. Hugs, Jen
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Izzy

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Re: It's killing me as much as it isn't him...
Reply #7 - Oct 13^th, 2008 at 1:12am

I am going f* crazy!!! We haven't left the house in 2 weeks...we tried to go to church tonite (our church has two services & no way were we making the first one with the mother he got this morning) & he got one so we had to leave early (at least we got the whole sermon in...we just couldn't hang around after for the usual coffee fest). I'm sooooo STARVING for human contact. Normal conversation that doesn't revolve around when the next time he can shoot up is. "Shoot up" has become our slang for the next time he can dose himself with Max. I can't WAIT for that doctor's appt this week...that ox needs to come quick!

I think I am done venting now...his turn:

He's mad that we can't have any sort of scheduled life, at least that's what it feels like. We make plans & have to break them. We don't go out. We can't explain why to people because they don't it. He's mad that I have to sit there & watch him go through it. He's just mad.

Suffice to say...s* a* day!!!

GR.

Anyways...thanks for the breezing board. Helps. Sorry if we aren't exactly sunshine. Sometimes life is s*. I mean, I know there are people who have it worse...I know that...I really truly know that. We just need to let it out how f* MAD we get sometimes. *Sigh* Another's started...ciao.

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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flipperlips

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Re: It's killing me as much as it isn't him...
Reply #8 - Oct 13^th, 2008 at 11:21am

Oh Izzy, sorry to hear that you have a rough day and night. Honey you need to make some time for yourself. Go meet a girlfriend for coffee and get some normal conversation that doesn't involve talking about shooting up. You can always come here to vent away. I've done that and a lot of times I feel so much better after getting it out.

His feelings of being angry (and yours too) are normal. Take whatever PF times he has and cherish them. Get out of the house. Go for a walk. Go out for dinner. Just get out and do something even if it's just for an hour. You'll be glad that you did.

Remember we are always here for you. Anything you need just ask.

Good luck with your doctors appt. Please let us know how it goes.

Hang in there. You guys are tougher than the beast. Don't let that dirty little bastard win.

Great big huge hugs Smiley

Jen

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Only one life.....only one chance to make the moment count for something - Racer1_NC

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: It's killing me as much as it isn't him... Reply #9 - Oct 13^th, 2008 at 11:17pm Quote: I'm sooooo STARVING for human contact. (530) 224-9515 I have unlimited mins. Call me and I will call you back immediately on my dime. There is no reason you need to feel alone here. I....we, are all behind you. 100% Linda
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thebbz

Ex Member

Re: It's killing me as much as it isn't him...
Reply #10 - Oct 13^th, 2008 at 11:31pm

I just love this paragraph. No mistaking the fire eyes and hot head. It sucks but we get through it.
Hope your fightin.
the bb

Quote:

"Here I am at 3 in the morning, lying propped in bed with a frozen donut on my head. Why the h* do we have frozen donuts?? It's amazing the frozen crap we have in that thing! I can just see it now: the thing inside my head, laughing at my attempts to depossess myself of it's claws. "A donut?" it shrieks. TAKE THAT! Oh My God, my brain is swallowing itself...at least this time I won't fall asleep with melted burger on my head after declaring "I will not put hamburgers on my face!" when that was all we had. Why don't we buy ice packs you say? Because I'm a cheap bastard, that's why! Frozen anything works just as good...and it's always there, ready for the attack of the hell breed thing in my skull that lives in the world of my living nightmares, reaching it's death sentence to the very end of my limits, taking it's sweet time killing me slowly without killing me at all. I WANT MY LIFE BACK!!! I WANT MY LIFE BACK!!! I WANT MY LIFE BACK!!! Do we have any bacon? This is melting."

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kayarr

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Re: It's killing me as much as it isn't him...
Reply #11 - Oct 13^th, 2008 at 11:49pm

Hi Izzy:)

My name is Kimberly and I am my husband's supporter. We have been married for almost five years now (together for 6) and he has been diagnosed with CH for 14 years.

You are both going through some serious adjustments. Hopefully you can get some O2 and do it correctly and have it work well. Jeff says sometimes it seems it isn't going to do anything but he has to keep it up and it will abort even a bad one. ( sometimes it takes 30 minutes)

Breath, know in your heart it won't kill him. (I know, it's not that easy, huh?) Arm yourself with as much info as possible. Knowledge is indeed power. Even though I was not with Jeff at the onset I can imagine the loss of innocence that happens when out of nowhere a person can get hit with that much pain. It's almost like your own body has betrayed you.

Chin up my new friend. Please talk about it. Your strength really will make a difference in your husband's life.

Kimberly

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Nothing is impossible! Just believe!!!!!

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sandie99 CH.com Hall of Famer Offline Wish it, dream it, do it - inspite the pain! Posts: 11975 Finland Gender:	Re: It's killing me as much as it isn't him... Reply #12 - Oct 14^th, 2008 at 3:16pm Izzy, that was amazing poem. Thank you for sharing it with us. All the best & PF days to your husband, Sanna
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Izzy

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Re: It's killing me as much as it isn't him...
Reply #13 - Oct 18^th, 2008 at 2:21am

flipperlips wrote on Oct 13^th, 2008 at 11:21am:

Oh Izzy, sorry to hear that you have a rough day and night. Honey you need to make some time for yourself. Go meet a girlfriend for coffee and get some normal conversation that doesn't involve talking about shooting up. You can always come here to vent away. I've done that and a lot of times I feel so much better after getting it out.

Thanks! I actually did that & it really worked. I mean it helped to just hang out for an hour & talk about other things. My friend L. was great when I needed to go b/c he txt'd but other than it was a good time.

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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Izzy

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Re: It's killing me as much as it isn't him...
Reply #14 - Oct 18^th, 2008 at 2:27am

Thanks to all for your support. We have set up counselling meeting with one of the senior pastoral staff at church & it has really helped a lot to adjust & get out some issues that are underlying. It's amazing what pain brings out in a person that needs to be dealt with! We are working on getting the oxygen; I am having to push very hard for it but we should know the outcome this Monday at his next appt.

Thanks for complimenting the poem...I have another few I've done after bouts; I'll get around to posting them later though. Just wanted to say we appreciate you all.

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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thebbz Ex Member	Re: It's killing me as much as it isn't him... Reply #15 - Oct 19^th, 2008 at 3:09pm Quote: Just wanted to say we appreciate you all. Back at ya. all the best you will prevail thebb
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Izzy CH.com Junior Offline Choose life. Posts: 70 Red Deer, AB, Canada Gender:	Re: It's killing me as much as it isn't him... Reply #16 - Oct 20^th, 2008 at 2:39am Quote: Quote: Just wanted to say we appreciate you all. Back at ya. all the best you will prevail thebb
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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: It's killing me as much as it isn't him... Reply #17 - Oct 21^st, 2008 at 8:10am Your a great supporter Izzy. Keep up the good work. Hugs, Jen
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ClusterChuck

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and again, and again,
and .

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Re: It's killing me as much as it isn't him...
Reply #18 - Oct 23^rd, 2008 at 4:41am

Izzy wrote on Oct 13^th, 2008 at 1:12am:

Normal conversation that doesn't revolve around when the next time he can shoot up is. "Shoot up" has become our slang for the next time he can dose himself with Max.

LOL !!! I USED to use that term, and the other is "snort" some good drugs, for when I used the nasal spray.

When my oldest daughter was in the second grade, and my youngest in the first, we lived in a TINY town that had a population of just under 1,000. Needless to say, everyone knew everything about everyone. You couldn't fart, without the whole town knowing about it.

Well, the school arranged for a State Trooper to come in to the school to talk to the kids about drug abuse. During his talk, he asked if they knew anyone that did drugs.

My daughter said that her daddy shoots up, and snorts drugs a LOT ...

Obviously, the Trooper was VERY interested in knowing her daddy's name.

Fortunately, the teacher knew of my "little" headache problem, and knew I took some serious medications for them. She told the Trooper, that she suspected that was what she was referring to.

We got several calls that day, from the teacher, other parents, AND the State Trooper, to ask about my "shooting up" and "snorting" drugs.

Obviously, I stopped using those terms ...

Oye vay!!!

(Damn kids are always trying to get me in trouble!)

LOL

Chuck, the druggie ...

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Izzy

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Re: It's killing me as much as it isn't him...
Reply #19 - Oct 24^th, 2008 at 4:29pm

ClusterChuck wrote on Oct 23^rd, 2008 at 4:41am:

[quote author=4F7C7C7F060 link=1223490476/7#7 date=1223874741]

When my oldest daughter was in the second grade, and my youngest in the first, we lived in a TINY town that had a population of just under 1,000. Needless to say, everyone knew everything about everyone. You couldn't fart, without the whole town knowing about it.

*lol* Totally know what you mean! We come from a tiny town too. Farting makes the six o'clock news. Actually we are trying to quit using the term just to avoid anything like that before it happens...but we haven't been successful yet.

Cute story!

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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BlueDog

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Re: It's killing me as much as it isn't him...
Reply #20 - Dec 6^th, 2008 at 10:38pm

"Here I am at 3 in the morning, lying propped in bed with a frozen donut on my head."

I thought my frozen salmon was bad..... LOLFOMA!!!! your story was great, i felt the pain I could almost smell the donut!!!

Keep up the sense of humor... it's about all that is keeping me sane at this point.... GOOD LUCK TO YOU and PFDAN's is my wish for you.
Cheesy

BLUEDOG

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I'm surviving it all!

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DeStijl

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Re: It's killing me as much as it isn't him...
Reply #21 - Dec 16^th, 2008 at 11:04pm

A sense of humor is the most amazing thing. (a good one even better)

I have never used a donut before. When I first read that I was thinking of the plastic "donut" used for problems on the other end. But the farther I read, it became clear that you were using a REAL donut. I bet that would work wonders around the eye. It would almost fit perfect.

I use peas, corn, peaches; anything that comes in a bag frozen. Even cheaper than ice-packs...snow in a baggie. You can collect it in the winter and keep em in the freezer. If you buy the cheap bags you can do it for pennies on the headache. Just a thought.

PFD2U
Eric

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« Last Edit: Dec 16^th, 2008 at 11:05pm by DeStijl »

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