Don't know how many times I've opened a new topic box here and then closed it again. What is there to say really? Saying I'm tired? That's like saying I'm breathing around this website!

But the weird thing? It isn't the cluster headaches- I can ALWAYS step up for that- crisis mode I got DOWN. It's all the rest now. Work, house, damn cat peeing in a corner, cleaning, etc. Or maybe it's just not being able to complain about it? I try to keep the bitching to a minimum- he has his cycle to deal with, I've been trying to keep everything happy happy around this place for him. I just have to figure having a clean happy place to exist in during a cycle would help.

But that is starting to crack now that we're 6 weeks into this ride; and that is the home stretch for us, luckily he's episodic so we're almost done for now. But I kinda let him have it today and I shouldn't have- sure he wonders where all that came from. Started piling up six weeks ago, so yeah, sorry about that... Guess I'm down on myself for not holding it together better. I don't resent him for having this, or the changes it imposes on our lives, or the effort it demands of me, but it is hard.

I guess, maybe I just resent the cat peeing on me when we're down.(Figuratively of course-if that was literal we'd have a nice little cat skin rug in front of the fireplace!) But that does kinda sum up life I guess so there is no point in complaining about it. Not like that's going to stop me or anything...

Just like you understand his issue,im sure he understands yours.It's almost as hard to be a suporter as a sufferer,(ask my fiance) But it's just the two of us living alone so it doesn't change our life as drastic as it does others. You have to vent or you will explode,this is a good place to do it, so bring it on we can handle ya. ;)Us clusterheads are the toughest!! :) As for the cat,while you were taking care of your clusterhead did you forget to change the litter box. ;D

Thanks, dude.

Bleh, shake it off, back to the trenches.

Pain is inevitable, joy is optional.

The beauty is that we get to decide about the joy part.

Better days are coming, Sweetie.....count 'em down.
Just think how grand it's going to be.  Shouldn't be much longer....hold that thought.

OK, I'm gonna jump on board the "I'm trying as hard as I can, but I'm freakin tired" train.

We are into 5 months of this cycle.  It usually ends in Sept, but has gone as long as Nov..I love my husband with all my heart and I'm trying to take care of everything because that's what needs to happen.  He is trying to hold down a job while dealing with these never ending attacks.  It's the least I can do.   I'm getting all his meds lined up (docs, scripts, pharmacy, insurance, oxygen refills) issues with all of the above at one time or another, and making sure he takes what he's suppose to take, when he's suppose to take it...taking every hint and suggestion off this site I can get my hands and giving it a shot.  (I have the utmost respect and empathy for those that are chronic)

Also, holding down a f/t high pressure job where I'm responsible for every penny of millions a yr, 4 offices, and 7 staff, reports, administration, yada, yada, yada...getting 2 kids ready for college, one my baby who left for the first time...bringing on a whole new emotional roller coaster for me as an official "empty nester".

We haven't slept through the night for months, and we're both exhausted....so I did something for me yesterday.  Had to go to a 2 day conference (on 3 hrs sleep from the night before) and instead of driving back/forth I booked a sweet hotel room, hit the hay at 10 and got my first good night's sleep in months (and I can NEVER sleep in hotels)...and I'm not going to feel guilty about it.  It was awesome.

Ok, I'm done bitchin' now. 

Now ALWAYS after I'm done complaining I count my blessings:
1.)  I have a hubby who loves me and we'll get through this.
2.)  I have two great kids with their heads on straight and goals, flying the nest is hard, but they are awesome and I am so proud of them, even though I miss them to pieces.
3.)  I'm SO lucky to have a f/t job...so many today are struggling and I have no business stressing about the responsibility or workload. I love my job most days.
4.)  We have INSURANCE to help pay for meds, treatment, etc..
5.)  My newest blessing?  THIS WEB-SITE..seriously..it's almost addicting.  Being welcomed into this family and talking with people who are going through the same thing has meant more to me than words can say.  Within a few hours of my first post I was having a heart to heart with Linda, Bob J posted important and informative med info I was seeking, Joe said "we love ya" for being a supporter, Dennis welcomed me home, Ginger & Katherine gave me savy insurance advice..later Marc hooked up us with much needed O2 info, and on and on.

So, thanks for letting me vent, I've never done that before about this (CH)...I am so blessed.  You guys all mean the world to me. [smiley=heart.gif]

Vent away,  Sweetie....it's a rough row to hoe...you're doing a good job.  I'll tell you too....it does get better...take it one day at a time.  I've been in you shoes.  You have to take a little time for yourself....a good nights sleep will recharge your batteries....glad you got some rest.

Lauren, 


I hope you read "his wifes" post above.  It is crucial that you take time to yourself.  She went to a hotel for some much needed rest and didn't feel guilty.  Trying to do it all when your husband is getting hit, takes a physical/mental toll on you supporters.

During any airline briefing before take-off, the flight attendant will tell parents who are travelling with young children that if their is a loss of cabin pressure to attach the mask to THEMSELVES first.  The reason being that if they are not able to function, their child will be in trouble.   That anaolgy works for this also.   Take care of you, take time away from the house.  Long hot bubble baths with the phone off the hook.  Coffee or lunch with friends...you get the picture.

Supporters are worth their weight in gold around here and have our full appreciation, but you have to take care of yourselves too.   

Linda

Hi all, chiming in here. I'm a 30+ year supporter too and agree with what Linda and Jackie both said. We have to take care of "me" too, so that we can help our sufferer. I know I would get really worn out in the earlier days with the kids, the house, the jobs, and the worry about him. Honestly since he started using o2 and got his prevent regimen down it hasn't been as bad. His last cycle was hard for us cause it had been awhile though.

If you are concerned about "venting" publically on the site out of not wanting to hurt his feelings, or the feelings of other sufferers, buddy up with another supporter (I'll volunteer) to vent. Even though I've been in this role for 30 years, I still need someone when times get tough too. Thank God for Jackie and MosaicWench this last go-around!

We're here for you - take care.

Christy

Kudos to you ladies here, Lauren,His Wife, take there advice, you need to be as strong or stronger when you support a loved one. Take care of yourself so you can take care of your family.

Just a couple weeks ago my Grand Daughter told me she said  " Pa Pa take care of yourself becuse I need you to be there for me forever" she's 9 years old,damm Grandkids make me cry all the time.

SUPPORTERS ROCK!!!!!

Thanks for the kind words and support Jackie, Linda, Christy and Mikstudie.  After 20 years, it doesn't really get any easier during a cycle.  I'm not sure why this one is a little harder to break or more vicious, but there is no rhyme or reason to this.  This site has been a God-send to me though.  I've learned SO much more, and the support is unbelievable.

I think for those of us supporters that are wifes and/or mothers, it's the natural nurturer in us that kicks in and takes over..I personally thrive on it.  But we musn't kid ourselves into thinking that we can be these high octane problem solving machines trying to keep a perfect world for our families and sustain high gear without an occassional burn out.  I'm just learning that...but tomorrow is a new day. 

Christy, I may take you up on that offer...thanks  [smiley=hug.gif]

Christy, Jackie and Pat are veteran supporters and besides their respective husbands....they have helped numerous other supporters on this site day in and day out.   


We love all 3 of them and just so I didn't show any favoritism, I put there names  in alphabetical order.  ;D

I'm late chiming in so please forgive me.  It's all been said, and very well, although I did get a chuckle about Linda's airline analogy - YOU Linda?  Airlines???  LOL.

Feel free to vent to us anytime - it's what we're here for and what we know best.  The ladies here have been my lifeline and I can't say enough about their support.

And just to inject a ray of hope for the future . . . .we just returned from a weeks vacation (just the two of us) with NOT ONE HIT to mar the week.  It was heaven!

Wow, Pat.....that is a true success story if I've ever heard one.  I'm thrilled for you both.

All you ladies are the best....I'm not sure how we'd get along without each other.  One gets down...here come the others to help hold us up.  It's what we do... :) 

Jackie wrote on Oct 16^th, 2010 at 2:14pm:

Wow, Pat.....that is a true success story if I've ever heard one.  I'm thrilled for you both. All you ladies are the best....I'm not sure how we'd get along without each other.  One gets down...here come the others to help hold us up.  It's what we do... :)

Exactly.... :)

Thanks guys, that helped. Sorry for not checking in- I've been reading the posts, but it's hard to type on hubby's iphone so had to wait till got back to the work computer to say what I wanted.

Got home on Friday to a patient and loving hubby, snippiness forgiven. Picked myself some roses from the back, had a great night. Next day we all went to a state park, had such a good day it. And lost our freaking camera. My fault, didn't put it back in the case. Grrr. Not only $250 I didn't have to throw away, but 6 months of pictures of our girls and ALL of the before and after remodeling pictures of our house. I drove all the way back out to the state park (1 hour each way) Saturday evening to see if I could find it- knew it was gone, but I'm an "action" kinda person, I HAD to at least try, but no dice. Cried all the way home- yeah, been a touch close to the edge for a while like that. Walked in the door to a "don't worry about it, we have our memories and our health." And he's right, and we do.

Speaking of, Lucas hasn't had a headache in over a week now- but didn't exactly pass the beer test yesterday- got some swelling and some pressure. We'll give it a week before he tries again.

Anyway, maybe I'm rambling, but thanks for all the support, hopefully one day I'll be able to pay it forward.

I waited two weeks PF till having a beer. Went ok but the last two times got some twinges

Lauren17 wrote on Oct 18^th, 2010 at 11:13am:

Thanks guys, that helped. Sorry for not checking in- I've been reading the posts, but it's hard to type on hubby's iphone so had to wait till got back to the work computer to say what I wanted. Got home on Friday to a patient and loving hubby, snippiness forgiven. Picked myself some roses from the back, had a great night. Next day we all went to a state park, had such a good day it. And lost our freaking camera. My fault, didn't put it back in the case. Grrr. Not only $250 I didn't have to throw away, but 6 months of pictures of our girls and ALL of the before and after remodeling pictures of our house. I drove all the way back out to the state park (1 hour each way) Saturday evening to see if I could find it- knew it was gone, but I'm an "action" kinda person, I HAD to at least try, but no dice. Cried all the way home- yeah, been a touch close to the edge for a while like that. Walked in the door to a "don't worry about it, we have our memories and our health." And he's right, and we do. Speaking of, Lucas hasn't had a headache in over a week now- but didn't exactly pass the beer test yesterday- got some swelling and some pressure. We'll give it a week before he tries again. Anyway, maybe I'm rambling, but thanks for all the support, hopefully one day I'll be able to pay it forward.

Sorry to hear your lost your camera. Do you ever upload your photos online? I use both Kodak.com and Shutterfly.com. I like to make online albums, plus print out photos or photobooks. The other advantage is having a "backup". I also always copy to my computer. Having been through a few crashed hard drives, I like the online backup. Even my Western Digital backup drive crapped out on me this year, so am extra thankful for the online backups.

Jackie wrote on Oct 16^th, 2010 at 2:14pm:

Wow, Pat.....that is a true success story if I've ever heard one.  I'm thrilled for you both. All you ladies are the best....I'm not sure how we'd get along without each other.  One gets down...here come the others to help hold us up.  It's what we do... :)

Tell Blake I love him.  Oh yeah, and I love you too.  :)

Thomas..... :-* :-*...and Gena too :) :)

As to the pictures- no home computer right now, so no backup. But Lucas did print some of them out about a month and a half ago. Not a total loss, but a big lesson learned! Leave it to clusterheadaches to put it all in perspective, huh? In the grand scheme of things it is a very small hardship to lose the camera, it just took stepping back and opening my eyes to see it.

Thought I should update as to where we are:

Headaches are over for now, but we're preparing for the next bout. We will never ever be caught unprepared again! To celebrate, and catch up on rest, we shipped our lovely daughters off the the grandparents for a week and went camping, just the 2 of us. I'd forgotten what it is like to camp without the worry of an 18 month old with a deathwish (or so it seems!) trying to throw herself off of cliffs or into a fire! We actually went to the place we met and later got engaged (yup, we met camping- don't hear that one a lot!). Lovely crisp October sky, choppy lake- BEAUTIFUL site. I opened one of our chairs to find THE CAMERA! What on earth, the feeling I got from seeing it, that I hadn't lost so many pictures of our daughters after all- wow. What a great feeling!

We went cliff jumping, fishing, sat on a windy cliff at night with a bottle of champagne, mimosas out of camp cups the next day, talked and talked and talked, and also just sat in the sun quietly next to each other soaking it all up. Also had to toss a toad outta the tent for jumping on my husband's head in the middle of the night!

Came back feeling 25 (which we're NOT, but we feel that way!) instead of 80. Refreshed, renewed, and refocused.

Lucas is out of cycle now, but I don't plan on going anywhere- I am here everyday that I'm not camping and I plan to keep it that way.

Unending thanks to all who reached out to us and helped us through this. We are not alone and we are not at this thing's mercy anymore and that is due entirely to this place and the people here. Thank you.

Lauren that is such great news and thanks for the update! So happy to hear Lucas has finished his cycle AND that you found the camera!

A group of us will be getting together in St. Louis over the long weekend in January (See Meetings & Gatherings section below this one). Would be great if you could join us and meet some of the people you've been interacting with face-to-face.

Give it some thought!

All Great News!!!!!

A great way to "celebrate" the end of a cycle with the huge bonus of the camera turning up too!

Thanks guys!

Can't do St Louis this year though we'd like to- new house, new expenses (with PreK for the older one), and one income (planned that way- we really wanted one of us at home with our girls for as long as possible) leave us little in the travel budget unfortunately.