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Title: whoi am , what i need Post by Ounce on Dec 29th, 2002, 3:42pm Hi, i am mary(ounce) , wife of brassbear(michael). He is a new ch and i am having to learn a new skill , dealing with it. First , a little about myself. I have been around or in medicine since birth, my mother is a nurse , my sister is a nurse and i spent 5 years as a naval corpswave. I also put Michael through nursing school so I have a decent medical background. The last few years I have been more into alternative medicine , herbs , massage , and energy work. Please don't laugh I have seen some amazing results. I also have a small degree of empathy in that I can feel others pain and strong emotions. I have gone through over 70 kidney stones with Michael , i could deal with those , we knew that they would pass and the pain would be over. The same with his and my migraines , we knew they would pass and how to deal with them while they were here. This clusster headache is something I am having a hard time taking care of , no telling when it will go and I can't seem to help him at all . How do I help him , there must be more that I can do then just be here. Any advice will be more than welcome. Thanks Mary |
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Title: Re: whoi am , what i need Post by firebrix on Dec 29th, 2002, 4:35pm Greetings again Mary! WELCOME! Pull up a chair and join us - we're possibly going to be here a while! You sure have some awesome skills for being the perfect supporter! The times I wished I'd had some medical training!!!! Veterinary experience is just not quite the same! Not many animals I've met seem to suffer from CH. There's not a lot I can share with you, as its a learning curve all the way - each CHer requires slightly different support of course, but I can add a few things. When he's in full cycle, DO NOT take anything he says personally. Let it roll and understand that this pain can make people say things they do not mean. I would too! Ask him how he'd like to be supported and do as he asks. Work out a plan of attack when the CH reptile hits and stick to it as much as possible. I had to toughen up somewhat (I must NEVER weaken!) to be able to help Mopar. There are many people here who are ready, willing and able to help and do so. Don't hesitate to ask. Put on your flame proof suit as things can get heated at times but here on this site is the best info I have found on CH. These people know what they are talking about and also understand what it is like to live with someone suffering CH. It is not easy. We must be strong. Feel free to IM or E mail me if I can be of any help. Have a good day Do not despair. Ever! firebrix |
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Title: Re: whoi am , what i need Post by Brassbear on Dec 30th, 2002, 11:02am firebrix, Thanks for giving Mary a hand. Yesterday was the worst CH I've had yet. I think she was very frustrated that she did not know what to do or how to help. The idea for working out a plan ahead of time is excellent and we will put it to use. Hang in there sis, we NEED you. Michael |
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Title: Re: whoi am , what i need Post by Margi on Dec 30th, 2002, 11:15am Hi Mary As usual, Firebrix has passed on some awesome advice for you. All I can add is to remind you that clusters DO pass, too. It's horrific to go through it and watch him get hit so hard, being completely powerless to help -- but it WILL end too...just like migraines, just like kidney stones. What I do for MY Michael, is go get him his ice bag, a glass of cold water, and set them down in front of him. I usually leave him alone but stay within earshot. THAT was one of the toughest lessons I've ever had to learn - to be able to disappear. We've been going through this so long now that I know he will call me or come to me if he needs me. Sometimes, he will let me rub his shoulders and gently up the back of his neck. I also know now that when he walks away from that (because it's not helping or it's making it worse), that it's not my fault and he's not angry with me. We supporters tend to go into a robot-mode when they're getting hit. It's a survival technique, I guess. Firebrix is 100% right in telling you not to take anything personally - it's the pain talking. I tell every supporter to remember to make time for themselves in the midst of a cycle. Even if it's just a 20 minute bubble bath, or a walk alone - do SOMETHING to recentre yourself, Mary - Michael needs you to stay strong and sane through this. Non-med helps for us have been: . ice (frozen peas work just as well), . water water water . oxygen (Mike uses welders oxygen and Bonnie gave him a mask at the convention, Jonny followed up with a regulator for him, so now we're all set for the next cycle! Thanks you two!) . gravol (or dramamine in the States) - helps him get to and stay asleep, sometimes avoiding middle of the night attacks. Benadryl will also do this, but don't let him take both! Mike's last cycle lasted 6 months and it's been the first medicated cycle for him in 10 years - prednisone, verapamil, lithium, imitrex inhalers. We can't help but think that the non-med cycles were shorter, but it could also be because his last remission was his longest ever because of the shroom therapy, but he's now built immunity to that. 'Tis a strange beast - if you need a shoulder, Mary, I'm at moxie_miss@hotmail.com. Hugs |
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Title: Re: whoi am , what i need Post by woobie on Dec 31st, 2002, 8:48am Hi Mary! I don't have anything to add to firebrix and Margi.. they say everything perfectly... I just wanted to say hello... and welcome!! Tina |
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Title: Re: whoi am , what i need Post by Ounce on Dec 31st, 2002, 4:25pm A big thanks to all. We are trying different methods and finding out what helps and what doesn't. will lwt you know how it goes Thanks again Mary |
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Title: Re: whoi am , what i need Post by Linda_Howell on Jan 1st, 2003, 4:43pm Margi, Just read your reply to Mary. I've got to say this one more time. You are awesome my twisted sister. And Mary? I liked your bottom line...... "we also serve, who stand and wait" Good girl!!!!!!!! Linda Howell |
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Title: Re: whoi am , what i need Post by Ree on Jan 3rd, 2003, 7:35pm Hi Mary (I love that name... one of my favorite all time mom's has that name) Sorry I haven't been much of a supporters supporter lately I've been supporting my supportee... LOL He isnt getting hit too hard as he has upped his Neurontin and for some reason its working this time... (((crossed fingers))) You sound like you have everything under control where you are and your hubby sounds like he is so appreciative of your care. That is half the battle. I've seen CH rip people apart. Don't let that happen to you. Know that the CH is the enemy and you will win against it together. Just remember we are here if needed and you can email me at anytime... Ree16angel@aol.com its hidden where my name is been getting funky mail and every now and then i take it off... good luck and take care Ree |
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Title: Re: whoi am , what i need Post by cootie on Jan 5th, 2003, 7:45pm Haven't been in this corner for a while.....anyhow....Mary.......CH reeked havoc in our house when it started for a long time....we didn't know what it was....he wouldn't go get it checked out cuz he was 'scared ta death' and we thought bout brain tumors ect.....it was a horrible time.....he was hit hard every day with attacks that lasted an hour or two and no real meds for it......he got impossible ta deal with dureing attacks and I felt it was rude cuz I did NOT understand and resented the upset. We got what I call disfunctional dureing attacks....we were both mad and had no real idea why exactly. Never heard of anyone one else in the world that went thru what we went thru...I felt it was a deep dark secret with a husband that would scream and cry like a baby every day like clockwork and writhe on the floor lookin like a monster. Best thing ta do I found out is have meds ect sumwhere easy ta find and grab lickey split.....I get his stuff or he does when it starts up and I will grab his water and tissues whatever (turn the tv down) and set stuff by him then 'I go get busy doin sumthing round here inside or out or I'll get on here'....he wants to be alone....I used to sit in the same room by him.....I couldn't handle it anymore even tho I felt guilty. But it works this way and he is more then cool with it.....kinda like team work and we don't cross each other about it anymore or get in each others way to upset the other....at least we try real hard not to now. It's the best way for you both to go about it. You need to talk to him about it and find out what he'd want to have nearby when goin thru an attack he mite want and meds whatever.....then set up your new plan ! Pam |
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Title: Re: whoi am , what i need Post by cathy on Jan 9th, 2003, 6:00am Hi Mary...sorry seems im a little late...sooo sorry Brassbear isn't having a good time...but hey you've found these guys and they are awesum...only CH'ers/supporters can really, truely understand all our weird ways to cope with going through not only the pain, but the pain of watching our loved ones go through it..... Many a nite sat on the stairs, listening to the groans, the ******* hells, I just wanna die.....and as cootie said ....watching your hero, scream and cry like a baby....cuts you up and ties yr stomach up into knots so tight ....makes me wanna chuck.. :'( Yeah....it all stinks...but we live with it, we fight it and together Im sure we can, if not eliminate it, at least learn how to cope with it.....here for you and anyone else ..... BTW....I have also studied alternative medicine..and also feel pain.....I understand what you mean by this....I practice.....Reflexology, Aromatherapy,Champissage, Lymphatic Massage....and have had some excellent results in my clinic using these for pain relief.....(hve not tried for CH but will be doing so, let you know how we get on...) especially the reflexology...if anyone wants any info..I have a yahoo ID on my profile...can't remember what it is or I'd put it up now...LOL best wishes to you mary Cathy :) cathy. |
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