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Worse CH nighmare came true please help (Read 1976 times)

Inventive_Mind

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Ahhhhhh Better

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Portland, OR
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Worse CH nighmare came true please help
May 7^th, 2009 at 6:16am

Well it was bound to happen eventually I was at church earlier tonight and he came early 2 hours early. It started with a strong shadow; my wife didn't say a word she just got a RedBull out of her purse and handed it to me. I quietly walked out of the lecture into a deserted room, then I swear he laughed at me ...... the dance was on and me without my O2. Not only a dance right up to a 8 going for 9, I was against a wall whimpering and wanted to get to the Jeep so I could yell scream thrash and cry, but I couldn't see. I moved through the room by braille and made it to the door, I got to the pastors wife and she went to get my wife, then he dropped me I was on the floor crying and screaming.

The real fun started when my wife ran to me with a group in tow, and she had to assure them it was "Just a headache" she go me up and I grabbed her shirt while she lead me out of the church to the Jeep. The attack lasted about 45 minutes and we went back in, Everyone I mean everyone was staring at us I swear they were wondering how I could be "Fine" after what they saw, then the judgment looks started "He was faking it, that couldn't of been real, etc, etc, etc"

This has been my biggest fear since fighting CH's now I want to find a new church and never go back there again. I know allot of it I'm creating in my head but now I'm that guy, you know what mean I will never just be James again I'll be that guy that broke down screaming in church

I am so embarrassed and even more so for my wife, I would welcome any words of wisdom because I don't know how to fix this one.

Thank you,

~James

There are no new ideas, just moments of divine clarity

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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Greenville, North Carolina
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Re: Worse CH nighmare came true please help
Reply #1 - May 7^th, 2009 at 6:55am

You may not want to hear my advise on this one.

I don't remember, as I am old and senile, but how long have you had clusters? If it has not been long, then your reaction is fairly normal. You have to develop some backbone, and just walk back into that church with your head held high. After all, YOU know that you were not faking this. YOU know that it was real. YOU know that it was not preventable. And you know what? The big guy ALSO knows!

You have to accept that this is going to happen, every so often. I treat these times as good education moments. Now that your fellow parishioners have seen one, now you can educate them on our condition. Don't be ashamed! Teach them what we deal with. Teach them how often the beast takes a big, strong, manly man to his knees and crying and screaming, like a baby.

It is not easy, but it WILL happen!

You should have been with me, back in 2004, at the Nashville convention, when a group of us went to a fairly nice restaurant, that was PACKED, and the beast decided to pay me a visit. I wanted to sneak back to the hotel, but the group I was with would not let me go. Someone ran back and got my oxygen setup, and brought it back. I was dying of embarrassment, for a while, and then I got to where I wasn't even aware of what was happening around me or even where I was. The beast was taking all my attention.

I was told later, that it was a great opportunity for the rest of our table to explain, to the wait staff, and other diners what we have, and how we deal with it. And there I was giving a live demo!

So, YES it is embarrassing, but just tamp that down and hide your embarrassment, buck up and don't be afraid to look people in the eye. Then tell them about our condition!

Good LUCK!

Chuck

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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black

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Re: Worse CH nighmare came true please help
Reply #2 - May 7^th, 2009 at 7:03am

Hi James

Don't care so much for others opinion.It's their embaressement not yours.(did any of them offer to help somehow?came to your car or afterwards in the church to ask how are you?)

Don't feel like that for your lovely wife who stood by your side and helped you.I ve felt like that and most of the time learnt afterwards that these where not the feelings of the beloved ones.If you have any doubts ask her for her feelings(sometimes its easier discussing).I am sure she doesn't feel like that.

It is your life and your pain!Both real and yours!!so go back again and again in that Church if you like it and if anyone cares from there,
you are there available to ask

better?

Oh come on!it's just water.It can't be that bad!

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BarbaraD

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Douglasville, TX
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Re: Worse CH nighmare came true please help
Reply #3 - May 7^th, 2009 at 9:17am

James,

What Chuck said. I was one of the DINERS at that nice restaurant who was WITH Chuckles when he got hit. Turned out to be the entertainment of the evening.

People at the next table were in a panic, wanting to call an ambulance - got mad at us for NOT doing something (we were sitting calmly talking, drinking our drinks and laughing while he was doing his "thing"). Svenn and Charlie calmly turned to them and "explained" CH to them and we went on drinking and laughing until Chuckles rejoined us. (If you want to see something "frightening" - watch the "video" of Chuck having an attack sometime - it's NOT for the weak of heart I promise).

My point - YOU can't help it - so don't be ashamed. Most of us have LEARNED that the hard way. I got hit in the middle of O'hare AIRPORT just after a storm when all flights had been cancelled - (ok, it's been 10 years and maybe I can go back there now!) Those people DEFINITELY know what a CH is (I did not do bodily damage to anyone, but I did have a cane at the time and one lady came close when she offered me an aspirin!) But I was NOT ashamed - just wanted relief and those people were being STUPID - wouldn't get me any O2! (I NOW carry a doc's RX for O2 - some things are just learned the hard way!)

WHEN you go back to church, stick your O2 bottle in your vehicle and have it handy JUST IN CASE (be a boy scout). If you feel a hit coming on go to your vehicle and get on the O2. If the people in the church are worth their salt, they'll HELP you get to your jeep.

Now go hug your wife for being a great supporter...

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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TedtheBear

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Re: Worse CH nighmare came true please help
Reply #4 - May 7^th, 2009 at 10:07am

Hi James,
Heed the words of wisdom already given!
Here's something to help others (your church!) understand what's happening - make a copy & post it on the church's bulletin board for all to see.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Keep your O2 with you!
I take my E tank with me when I go to church. I sit in the back & am able to ditch if a hit comes on.

Don't just aim high, hit the target!

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chrisw

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Re: Worse CH nighmare came true please help
Reply #5 - May 7^th, 2009 at 11:07am

James,
Dont feel embarrased. I am sure that everyone was concerned about you, and they will feel better knowing that youre going to be allright. Just a suggestion, but can you take imitrex. I try to stay off of it, but i bring it in my purse just for those instances that you have described.

If the people in your church dont understand that you have a severe medical problem, then they arent being very "churchlike". Believe me, most people just want to help, and you cant feelbad about other peoples reaction

good luck,
chrisw

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Guiseppi

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Re: Worse CH nighmare came true please help
Reply #6 - May 7^th, 2009 at 11:39am

A recent suggestion on the board...those cute little soccer chairs that come in the nylon bags....the bags are just the right size for an E-Tank. On cycle I'm never more then a minute or two away from my oxygen.

As to the embarrasment..I agree..it's theirs not yours. Sorry dude, those rides really really suck. Cry

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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McGee

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Re: Worse CH nighmare came true please help
Reply #7 - May 7^th, 2009 at 1:39pm

my biggest fear was getting hit in work, i spent a long time telling my work collegues about what this does to me, whent through the normal aspirin, migraine, it could be worse and stop looking for sympathy comments and in the end they just didnt get it. then on night shift i got hit, nothing big but enough to get me rocking after wich one guy looks at me with a face like hed just seen a ghost and asked was that one i then tolled him ye not too bad you should see me at kip 9

now the fear of being hit in work is gone, i dont give a flying f++k what others think but im allways willing to explain if people ask or are interested.

mark (only feels embarassed when i wake up naked next to the pet dog Smiley

)

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Katherinecm CH.com Sponsor Offline Posts: 432 Des Moines, IA, USA Gender:	Re: Worse CH nighmare came true please help Reply #8 - May 7^th, 2009 at 2:00pm I say as long as they're not blaming you for your illness you should go back. Issues like that, supporting each other, is what church is for. I once had a "prophetic" woman at church tell me that the headaches were my own fault because I was allowing the demon that gave them to me to stay inside me.
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Katie

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I just get 'those' headaches.

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Re: Worse CH nighmare came true please help
Reply #9 - May 7^th, 2009 at 3:47pm

James,

I do work for a church and I continue to train. I also have CH and chronic migraine. That can make planning anything I need to do at church fun.
You should also see the looks I get as I drag in the O2, assorted laptops and other bits of kit that help me function then they find out I am the one they invited to come in and talk to them.

CH is not just a headache, whilst I can not do this at the time I do explain I have a complex neurological disorder. If I use the phrase just a headache some bright spark tends to think I am over egging something that can be sorted with just an aspirin. I have been known to use the phrase 'I am crying when that happens because my brain is being crucified by pain'.

You are still James beloved by God who just happens to get those awful headaches.
You screamed because you were in acute pain. Show me a human being who is still concious who does not cry out involuntarily at that point.

[quote/]I say as long as they're not blaming you for your illness you should go back. Issues like that, supporting each other, is what church is for. [/quote]
I agree with this point although working in churches I have to admit the supporting each other is often the ideal rather than the reality.

Is there a pastor or similar at your church you could chat to about this if you are still feeling embarressed?
I know I am happy to make time for anyone were I work who is feeling unhappy about church for whatever reasons.
A good pastor cares enough to really listen and if need be they act as an advocate for someone who has not been understood by the church just as Barnabus did for Paul.

Pain is no evil unless it conquers us.

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Worse CH nighmare came true please help Reply #10 - May 7^th, 2009 at 5:39pm mark (only feels embarassed when i wake up naked next to the pet dog ) Dude.....you aint right! Joe
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Chris Morrow CH.com Veteran Offline Messin' with Sasquatch Posts: 100 Asheville, NC Gender:	Re: Worse CH nighmare came true please help Reply #11 - May 8^th, 2009 at 10:04pm 2 Corinthians 4:7-12. I came across this verse today and thought of you.
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Inventive_Mind

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Portland, OR
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Re: Worse CH nighmare came true please help
Reply #12 - May 10^th, 2009 at 4:25am

Wow,

Thanks everyone I thought I would update since it's been a couple days. I did talk with my wife and she didn't know what I was talking about Huh

I must have looked like that old RCA dog becase she started to laugh at me (She's allowed Wink

) anyway her rendition of what happened wasn't even close to mine, weird how that happens. Anyway the group we were at was for CR (Celebrate Recovery) she told me that everyone was first concerned and wanted to know what they could do, then when she told Michelle the pastors wife what was happening the response was, " So this is what you have been talking about" we had both talked in group bout my CH's but they had no idea or reference point to go off of. The trip to car for me was hell as you all know trying to navigate treacherous terrain such as hallways and stairs during an attach. What I didn't see was the janitor following to make sure I didn't fall or to see if Amanda needed further help. Afterward my interpretation of judgment was just as you all said it was concern and curiosity( I really think they were looking for the hole in my head with goo coming out but alais no such proof Grin

)

The following day I got a couple phone calls asking how I was doing and offers to help if we needed it, I may work it for a free babysitter.... hummm maybe not no need to push it Roll Eyes

My neurologist came through and Aetna medical supply made a last min trip on Friday to drop off my new O2 setup. I must say KUDO's to the delivery driver, he had experience with CH suffers and got me a 15 lpm adjustable regulator and a non- re breather mask even though my script said 10 lpm and a standard mask, he just said he knew I would prefer them and left it at that. I also got some of those cute little tanks with a case and padded shoulder strap for my mobile setup, I feel like I'm ready for safari now.

We are going back to church tomorrow and I know there will be a lot of questions but I also know it's coming from the heart, I guess this episode was to teach me more than them and believe me I got the message load and clear. Now I thank god for surrounding me with wonderful people and for directing me to this site.

THANK YOU ALL for your SUPPORT

~James

There are no new ideas, just moments of divine clarity

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Inventive_Mind CH.com Junior Offline Ahhhhhh Better Posts: 43 Portland, OR Gender:	Re: Worse CH nighmare came true please help Reply #13 - May 10^th, 2009 at 4:33am Chris Morrow wrote on May 8^th, 2009 at 10:04pm: 2 Corinthians 4:7-12. I came across this verse today and thought of you. Thank you for the passage, it fits the situation perfectly. God Bless ~James
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