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Supporter's Corner >> Supporter's Corner >> Newbie (vent of some sort)
(Message started by: tirednalittlesick on Mar 31st, 2008, 2:34pm)

Title: Newbie (vent of some sort)
Post by tirednalittlesick on Mar 31st, 2008, 2:34pm
He's had them for nine years now. It's getting better, but I am very aware that if you start out with a great deal of pain and you reduce it, there's still going to be a lot of pain to deal with. He gets acupuncture from my mother and it's the only thing now that will help. His season started a few weeks ago. I lost myself at first. We may have only been going out since August, but I love him deeply. I've managed to regain composure these past few weeks though and now, I'm trying something new. Instead of crying hysterically, I now try to breathe deeply and steadily and sit quietly. I offer my hand to squeeze if I can. I make sure he knows that if it hurts, he can squeeze me as hard as he needs. He can't stay still so it looks like a very painful wrestling match for the person who's winning (if that makes any sense). I feel helpless and I will do anything I can think of to help and I've only come up with two or three things. 1) Becoming human "teddy bear" 2) Cooking and making sure he doesn't consume anything else that will make his body unhealthy and hinder the healing process, and 3) Being there. Seems to be the most I can do.

The thing that gets to me is the money factor. I'm going through school and I'm looking for a job as a caregiver, so I'm broke. He can't work during his season. Well, right now he's struggling with himself with whether he should try to work for the next two weeks or not. If he doesn't they might not call him back ever. He was supposed to start last Monday, but he got a headache. He's in the middle of his season (I'm hoping at the end). He doesn't have enough for rent (due in two days), and he's constantly wondering how he's going to keep a roof over his head and problems keep stacking up one by one as he sits paralyzed in his bed fighting headache after headache.

Title: Re: Newbie (vent of some sort)
Post by deltadarlin on Mar 31st, 2008, 3:28pm
Welcome to family and friends.  From what I've read, you're probably doing all you can do (I may be a little brain dead, so excuse me if I make a mistake).  I've been a supporter now for over 25 years, so btdt, got the t-shirt.

Why can't your boyfriend work?  What type of work does he do?  

When does he get hit the most?  At night, or at different times?  You say that acupuncture is the only thing that works for him.  Do you know what other meds he has tried?  And I'll say it before anyone else gets to chime in....has he tried oxygen?  Oxygen is a wonderful abortive for quite a few here (my husband keeps a tank at the house, one at his shop, one at his office and one in his vehicle).

Again, welcome and I'm sure there will be others along shortly.  I just happened to have an early day, so came by here to see what was going on.

Carolyn~aka~deltadarlin

Title: Re: Newbie (vent of some sort)
Post by tirednalittlesick on Mar 31st, 2008, 4:42pm
My boyfriend hasn't told me what he's tried. He's told me he's gone to too many doctors and neurologists who gave him too many drugs that only messed up his vascular system and made the CHs worse. He has very little faith in Western Medicine at this point. He's very bitter about the US health care system. All he's told me is he's tried everything. The neurologist seemed to have been trying the hit and miss method in desperation.

He can work, but during his season, if he exerts himself too much, it'll trigger one. So, I don't really ask him to do anything. The other day, he started feeling "the nail" after his shower. Right now, he's working for the elections. He opted out at last minute last week and promised to go today, but he didn't realize it was a two week gig. He found out last night and he's been worried since then. I'm sitting at home sick and wondering how he's doing. How his boss is taking the "Colleague Letter" I printed out for him on Friday. Crossing my fingers that maybe maybe maybe it ended with yesterday.

It's been since the 13th, the day after his birthday. He's gotten about 3 a week on average, I think. Last week was very hard on him. He had to deal with his dad, and a couple of tickets, and roommates. All the little stressors are killing him. He had two this weekend and he told me that they were the worst he's had so far. One on Saturday night, after a very loud banquet, a complaining Dad, and being stuck in the car with my mother and I who were not getting along the way we should that night. God, I blamed myself for triggering it up until last night when I found out, it was already starting earlier . Still, I know I didn't help, but I was unaware of his condition at the time.

I've been meaning to ask him about the O2, but I keep forgetting..

Title: Re: Newbie (vent of some sort)
Post by Jackie on Mar 31st, 2008, 6:30pm
Hi W and welcome....

Don't forget to ask about the 02....its' very important....a good abortive, inexpensive and no side effects.

Read all you can.  Knowledge is power.  Stay calm, Sweetie...CH is  horrible and painful but not termial.  Talk to your boyfriend when he's not under attack and form a plan of action together.

We're always around to help so ask questions if you need.

Again, welcome...stay strong and hang in there.

Good Luck,
Jackie

Oh...one more thing.  If at all possible he should go to work.  I know it's tough but giving in and changing lifestyles is letting the beast win.  If the beast gets one down far enough he'll kick your ass.


Title: Re: Newbie (vent of some sort)
Post by W on Apr 1st, 2008, 7:19pm
I asked him about the O2. Looks like none of us can afford it right now. He tried to go into work yesterday, but had an attack and came straight back home. He gave them the colleague letter I printed out for him the other day though and he said it helped. He's not working this time around, but he'll be in for the next time they need him  :)



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