The beast just came for one hell of a visit.  Damn beast makes me so crazy.  Sometimes I feel there’s nothing I can do but sit and watch as this demon bastard attacks the one I love.  It kills me to watch the rocking, the pacing, the head banging.  Watching him collapse in complete exhaustion once it passes….I just can’t find the words to describe how it makes me feel.  How does he handle this multiple times everyday?  How does anyone?

I do what I can to help.  I will leave him alone.  I will hold him in my arms.  I will hold his hand.  I will rub his neck.  I will give him his injection.  I will get him an energy drink.  I’ll do whatever he wants me to do for him.  I pray for pain free hours, days when I’m feeling greedy.  I feel that it’s not enough.  The fucker still keeps coming back.

I try to stay strong.  I have to; having me break down isn’t going to do either of us any good.  I try to stay positive, sometimes I fail, but negativity just isn’t an option.

We’ve got to keep going forward.  We’ve got to keep living life.

Love to all,

Jen

Quote:

We’ve got to keep going forward.  We’ve got to keep living life.

You said it Jen. If you didn't feel the way you do, there wouldn't be much love dear. All of your feelings are normal and you just have to keep on keepin on. I hate it for ya. Hell I hate it for us.
YOU ROCK
thebb

Hi Flipper Girl,
Oh those feelings!  I know what you're saying as I've been there a million times.  Wish I could give you a hug.  You, dear girl, are a great supporter!

After spending time with you and Phil I know you're BOTH in good hands.  Your attitudes are spot on and the determination to live your lives in spite of it all is to be admired.

I'll always remember what Phil said to me as soon as we walked in Matey's....he hugged me and said 'thanks for helping my wife'  Soooooo, from talking with you and him saying that I know you all are a STRONG TEAM and totally committed to each other.  Keep hanging in there, Sweetie......you all will always fight and win.

Hope you're feeling better my now.  Let's think about meeting up next month and our trip to St. Louis....how's that :)

To quote thebb, YOU ROCK......both of you!

Much love to you both,
Jackie

Thanks you guys.  I'm trying to feel better.  You know after I posted that I went to bed and slept for 10 hours.  Un freakin believable.  Then Phil tells me that he slept maybe a half an hour.  Oh, how I feel guilty.  I know that I shouldn't, but I do.  I have to work tonight so I'm going to go take a nap.  UGHHHHH!!!!!  I wish he could sleep, even if it's just for a couple of hours straight.

Today is a really bad day.  He says he doesn't have a full blown CH but he knows it's coming.  He says his eye hurts, he wants to rip it out.  Nothing is helping at all today. He shot up with Imitrex, nothing.  As some of you know O2 isn't helping him at all right now.  Maybe nothing is helping because he is so exhausted.  I don't know.

We do have another nuero appointment next week Tuesday.  We've been researching and doing our homework.  There are things he would like to try.  He mostly wants to detox so he can bust at this point.  All the frickn' medication he takes and nothing works.  Maybe all the medications are a part of the problem.  Who knows, it's all so frustraing.

I can't wait to get together again Jackie.  It's part of what keeps me going.  St. Louis is going to be a blast and I can't wait for that either.  I'm going to search around on the web to find us some place fun to go in Kalamazoo.

I'm sorry for ranting.  This place is my safe place.  The only people who understand me completely are those who are here, and of course Phil.  Thanks for always being here for us.

Love to all,

Jen

You kinda rock yourself Jackie.   :-*

So do you Linda. :-*
You know slamming all the trex and with all the other drugs, sometimes the things become intractable and need a switch up. Maybe the neuro will be on to this. He may switch to a different triptan or even do a DHE IV drip. Sometimes hugging the 02 bottle for a day or two to let the other drugs leave your system helps. My point is there is still many thing to do. It is not hopeless.
hang tough both of ya.
thebb

oh dear jen
your are such a sweetheart.
you deal with this everyday like phil. you ask how he does it, well i know how and thats because he has you. with all on your plate you have the compassion to pm me and make sure how i am doing.
i no longer have a supporter and how i wish i could clone you.
Jen you are a strong nurturing , loving ,compassionate women and its the moral fiber and integrity you have that makes you the supporter of the year in my book. thank you for helping me the best way you can.
so please first take care of yourself a bit then you will have more for phil who despartly loves you and needs you in his life.  i figuare this is what phil would be saying if he could feel better long enough. so i am saying it for him.
Linda: you to have been very kind to me and i do want to call you soon.  your awsome and yes i will help with what you pm'ed about.

Love you all
please stay strong  :-*

Karl :'(, I will be your supporter.   :'(

I can't be in your home getting you cold packs and making sure your 02 tanks are filled and ready...but you can call me and you can pm me and I will listen and help any way I can.   Venting people are my specialty.    ;)

flipperlips wrote on Oct 28^th, 2008 at 3:57pm:

You know after I posted that I went to bed and slept for 10 hours.  Un freakin believable.  Then Phil tells me that he slept maybe a half an hour.

Feels good, dont it? ;)

Phil has no choice, hes a clusterhead and can do it!

I did it chronic for 31 years, I had too!

thank you linda;
with george,john,jen and you i have one heck of a team. there are a few others that jump in the ring like brian j who has been helping. but it feels good to have a team of all stars; (like you jen)

wrote on Oct 28^th, 2008 at 9:04pm:

flipperlips wrote on Oct 28th, 2008 at 3:57pm:  You know after I posted that I went to bed and slept for 10 hours.  Un freakin believable.  Then Phil tells me that he slept maybe a half an hour.   Feels good, dont it? ;) Phil has no choice, hes a clusterhead and can do it! I did it chronic for 31 years, I had too!

You bet your ass it felt good.  Phil can and will do it there's no question about it.  Your right, he has to because giving up is not an option.

bbz - you're right there are still many things to do and try

Karl thanks for all the kind words.  Phil and I both try to do whatever we can to help from so far away.  Most of the time the best that I can do is PM you since I always seem to be sleeping when you call, LOL.

Phil got a little sleep last night while I was at work.  He's up now and seems in pretty good spirits.  Boy does that do my heart some good.

Love you guys  :-*

Jen, First off, let me say, I'm sorry I didn't post earlier. I've been spending a lot of time with my 103 yr old grandmother, who after soo much life, is slipping away from me.....sad, but 103.......what a run!

As for you and Phil....I think Phil is learning to cope with the beast. he's NOT gonna let him win-we KNOW this....soo, what you see is the aftermath of the battle-SURE  he's exhausted, but it's one more battle HE  won!
Teamwork is asgreat thing. When a good team is doing their thing, their strengths and wseaknesses ebb and flow......one perhaps is stronger right now, so the other can rest....then there's a power sorge and the roles change. I'm proud of you both as you stand together in this, but, you need to remember......you need your strength too! Phil will let yuu know how you can help-and you'll know really WHEN to worry.
Oh, and Jen........get angry! It's ok!  Make a direct hit on ole Hisself......can't hurt................. might help!
Wish I could hug you, girl!
Cathi :-*

YEP!!!!!!Our Linda ROCKS and we don't know the half of it, I'm betting.......hell, I know it for sure!!! :) :) :) :) :)

Oh Cathi, I wish I could hug you right now too.  I'm sorry to hear about your grammy.  103 is one hell of a run for sure.  I'm sure she has had a very happy life and it's awesome that you are by her side.  I see it way to often in my line of work where I'm the one holding someone's loved one's hand while they are passing.  It is an experience that I've had many times and a feeling that is totally indescribable.

Big Hugs  [smiley=hug.gif]

Jackie, Jonny, Linda, Cathi, bbz, Karl you all ROCK  [smiley=headbanger.gif]

Quote:

It is an experience that I've had many times and a feeling that is totally indescribable.

I had to do that once, I hope to never do it again. Totally indecribable for sure.
Cathi Rocks too.
I sense a group hug coming on. [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]
Keep on truckin Karl.
thebb

I like that 'thebb' guy.  Yep, I like him just fine.....  [smiley=headbanger.gif]

I kinda like him too Jackie.   ;)  and his wife/supporter Joan.

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Linda

Oh you guys.(I'm all verclempt), Hey who is that hot chick in the photo? I would be lost without her.
GO AWAY BEAST, leave my friends alone.
I just hate this condition.
the bb

wrote on Oct 30^th, 2008 at 1:31pm:

GO AWAY BEAST, leave my friends alone. I just hate this condition. the bb

I'll second that.  

I'm sure she'd be lost without you too.