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Topic: I thought I was free... (Read 4445 times) |
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dannyandcindy
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I thought I was free...
« on: Nov 13th, 2007, 12:59pm » |
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It looks like creating a new thread is the right way to say howdy?
I posted this on the Guest Book yesterday, thought it said what I wanted to say as an introduction.
I found this site today. My heart is breaking for all of you. One advantage to thinking that I have been alone in my pain is that I hate to imagine anyone else having to deal with it.
The first time I heard about CH was in 1997 after I had my first few K10s. I now wonder if the severe migraines I have had since my preteen years have been lighter cycles leading up to the distinguished cycles I saw from 1997 to 2003.
I had been thinking I was free after a 3 1/2 year hiatus. I passed off the few k3 to k4 headaches this summer to other causes. Last week I grudgingly admitted I am in another cycle.
They are not gone. OMG, they are not gone.
Friday I had a two-hour k9 that broke for about 20 minutes then hit again for another hour. I felt shaky and exhausted until Saturday evening. You know how draining it is, I suspect.
The pain is frustrating on so many levels. God is so active in my everyday life. When the pain hits, my prayers seem to hit the ceiling and go no farther. I keep telling myself that He will never leave me nor forsake me, and I keep asking Him to please, please help me.
You all know what I am going through. I wish you didn't.
I suspected years ago that the headaches were worse when I was dehydrated, and I habitually drink four to five quarts of water a day. Heat, ice, about 10,000mg of aspirin, and deep (bruising) massage (lately with a "thumper" vibrator) have been my abortive treatments. I guess they may just be a part of my "dance", but you've got to do something. Screaming seems to concern the neighbors, especially since mine change each night.
My wonderful wife of 14 years and I drive a truck together in the US and Canada.
Thank you to those of you who are coping and have learned to keep a great attitude while you do it. You are an inspiration.
Danny George <dannyandcindy@hotmail.com>
Monument, CO USA
Monday, November 12, 2007 at 21:29:38 (EST)
Thank you for this website, I have learned so much already. It is great to have the Kip scale and lingo so I can communicate what is happening to me.
Danny
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Guiseppi
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Re: I thought I was free...
« Reply #1 on: Nov 13th, 2007, 1:06pm » |
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Welcome to the club! (But so sorry you have to be a member!  ) You need to get onto a regimen to control these things. Get thee to a neuro and start managing your care. You will need:
1: a preventative strategy. A medication you take while on cycle to reduce the frequency and the intensity...no more of those damned KIP 10's! I use lithium, other popular prevents are verapamil and topomax.
2: an abortive strategy. Your number one abort should be oxygen. Extremely effective for most and no side effects. Secondary abortives are imitrex...effective but very expensive....many can abort a hit using caffeine..either strong coffee or the energy drinks which combine caffeine and taurine. Slammed at the first sign of an attack many can abort a head ahce.
Avoid alcohol and stay away from narcotic meds, both are significant triggers.
Hang in there, you're not alone anymore.
Guiseppi
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Rosybabe
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Re: I thought I was free...
« Reply #2 on: Nov 13th, 2007, 1:43pm » |
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Hi Danny!!
Welcome aboard!!
Joe has given you great advice. Add melatonin and kudzu to the list of possible treatments, those two are over the counter and you can get them just about anywhere.
wishing you a very very short cycle!
Thanks Cindy for being such a great supporter!
hugs to both of you!
Rosy.
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dannyandcindy
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Re: I thought I was free...
« Reply #3 on: Nov 15th, 2007, 9:20am » |
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Thanks for the responses.
My wife and I are team drivers on the truck, one of us sleeps while the other drives. Yesterday afternoon I awoke with with a headache and thought I'd try caffeine. IT WORKED!!
I slammed three energy drinks along with my asprin. The pain level went from a Kip 7 to about a Kip 3 in 10 minutes. Happy Day! After a typical amount of time, 3 hours, the headache faded completely. I couldn't go back to sleep, but I would not have been sleeping anyway. Heck, I couldn't sleep partly because of the excitement of finding something that works.
thank you, thank you, thank you
Danny
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tessistired
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Re: I thought I was free...
« Reply #4 on: Nov 15th, 2007, 10:15am » |
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Hi Danny and Cindy! Welcome to the site and your new second family although I am sorry you have to be here. I am a newbie to the site as well for almost a couple of weeks now and have learned soooo much and have been so welcomed by everyone so try to take a deep breath and relax a little bit! We all will help as much as we can. I have been dealing with these demons since spring of 2001, started off episodic and now chronic...and just like you...pray to the Lord to PLEASE PLEASE just take them away and make the pain stop! And when he doesn't wonder why? But I am sure you know we need to focus what little energy we have left over on prevention and pain management and still trusting in our Lord because for some reason we have these ch's with no known causes so no cures yet. Lets do the best that we can to endure what we have to deal with...i know what a struggle that can be...I am a single mom of two young children ages 6 and 10. They are wonderful and so good to me and help try to take care of me when i have my hits. What a blessing they are!! And Cindy thank you for being such a blessing to Danny! I am praying for you both daily!! And yes isnt it exciting that the energy drinks work...i just learned that recently too!!
well have a great day...learn lots...and hope to talk soon!
Blessings
Tess
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Guiseppi
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Re: I thought I was free...
« Reply #5 on: Nov 15th, 2007, 10:23am » |
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Congrats on the success dude, it's such a great feeling to have a weapon. But you're still just bringing a knife to a gun fight!!!
Wait until you see how fast 02 can beat it down, and then you fall right back to sleep. And when all else fails i go nuclear with my imitrex inject and it's nirvahna again!!!! Hoping the success continues for you!
Guiseppi
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dannyandcindy
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Re: I thought I was free...
« Reply #6 on: Nov 15th, 2007, 2:01pm » |
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Thanks Tess, Guiseppi, Rosy
I have never seen a headache specialist. The doc that told me about CH was an orthopediac dr and I had only one visit with him. I thought that a neck injury I had sustained was the cause of the pain.
It is not that I do not trust doctors, I have family in the medical profession. I just realize that each of us care more about our health than anyone we might see about it. I typically do my own research and then decide if I need a doctor (or a lawyer or a mechanic or a plumber) to do what I already decided needs done. I realize also the weaknesses in this approach, but all the misdiagnosis and wrong treatments that are discussed on this board show that I am not too far off in what I do.
No effective treatments were around when I looked into CH last time. I was not interested in pursuing surgury or narcotics. Many advances have been made over the years, and I am so grateful to you for making me aware of them.
I will resist the urge to go down the the welding shop for a can of O2 and rig up a mask. I guess you need an Rx for O2? We have limited space in the truck. I have seen the portable cannisters people bring into restaurants, are they big enough? Do you leave the mask on the whole duration of the headache, or do you kill the headache and take off the mask?
I imagine that all this is somewhere on the board, but I appreciate your input.
Danny
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| « Last Edit: Nov 15th, 2007, 2:10pm by dannyandcindy » |
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Guiseppi
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Re: I thought I was free...
« Reply #7 on: Nov 15th, 2007, 2:24pm » |
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I carry the E-tanks, they're about SCUBA tank size. I run it for the 10 minutes or so it takes to kill the CH, then put it away again. If by portable canisters you are talking about the oxygen concentrators, their output is too low for our purposes.
You do need a prescription for 02 but there is no difference between medical 02 and welding 02. Our experts say they come outta the same tanks! So if you have access to welding 02 and can rig up a high flow regulator go for it!!!
Guiseppi
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ski2k
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Re: I thought I was free...
« Reply #8 on: Nov 15th, 2007, 6:42pm » |
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Welcome aboard!
You've already been given some great advice, so now use it! 
To answer one of your questions a little more directly: You asked about using O2, and how long you need to be on it. Yup.. You need to be on it for the entire length of the headache, plus usually a couple minutes after it ends. But here's the great part: Using O2 will stop the headache for most of us within 10 minutes!!
Definitely check out the Oxygen info in the links provided on the left of this page. It will give you even more great info. And if you need anything clarified, we're always here to help!
Best of luck,
Adam
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artonio7
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Re: I thought I was free...
« Reply #9 on: Nov 15th, 2007, 8:53pm » |
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Danny welcome... I was just talking to God and he asked me to tell you to go to your neurologist and get a prescription for medical grade o2 at 15-25 lpm with a good non-rebreather mask.
Oh... he also said to keep praying...and that he listens to everyone all the time.
with warm regards,
Tony
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GrandPotentate
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Re: I thought I was free...
« Reply #10 on: Nov 15th, 2007, 10:32pm » |
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Danny, welcome. I groped around for years trying to find out what these were - thought I was a goner when they first hit. I heard about this site from my kid's bartender. There are some good, caring folks here who have helped me through a lot. I have been fortunate to have found a couple docs who took the time to look into this, and O2 has been very effective. Read up on it in the links over on the left and on the ouch site. Everything has side effects, O2 isn't too bad. You need a lot (~10l/m) for a brief time (10-15 minutes) and it might knock them down. The E tanks will carry me through quite a few hits - two or three usually get me through an entire cycle.
As bad as these things are, there are worse. I once asked someone with one of those worse things how she could cope with it. The replay was that everybody gets something, this happened to be her thing. Well, CH's are our thing, and we can find ways to deal with it.
May your cycle be short and your hits milder!
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Jon
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dannyandcindy
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Re: I thought I was free...
« Reply #11 on: Nov 19th, 2007, 9:15am » |
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thanks guys
I am about an hour into a k8 now. caffiene has not touched it. not typing very well.
anyone know a nurologist in Colorado Springs or Denver? Last time I saw a doc about something I ahad a to choose a primary (don't have one now), get a consultation, get tests, go in to ask for a specialist, get appt with a specialist, get tests, go back in for results.
ONly get time off every coulple of weeks, it could take months to do this. anyone know how to get around it?
help
danny
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sandie99
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Re: I thought I was free...
« Reply #12 on: Nov 19th, 2007, 1:26pm » |
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Welcome! 
Wishing you PF days,
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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Rosybabe
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Re: I thought I was free...
« Reply #13 on: Nov 19th, 2007, 7:14pm » |
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Danny if you have the means ($) get the welders tank now , the non rebreather mask and the regulator while you work your way to the Doctors and insurance nightmare. I think the only way around would be the emergency room  .
The welders oxygen is not that expensive and you can get by with a small tank for those hits that don't respond well to the energy drinks. Keep frozen pea bags in your truck and make the air conditioner really cold.
Good Luck Danny and hang in there...
pain free wishes!
Rosy.
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dannyandcindy
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Re: I thought I was free...
« Reply #14 on: Nov 19th, 2007, 7:46pm » |
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Thanks for the ideas.
Wow, that was really a killer this morning. Something strange (for me anyways), that I have not seen mentioned on the site, has happened for the second time this cycle. After struggling with a k8+ for three hours, it broke for about half an hour then surged back at full strength for about two hours. NO FUN AT ALL 
Is this situation discussed anywhere? Especially if there is a cause or trigger for such an event.
Danny
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Rosybabe
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Re: I thought I was free...
« Reply #15 on: Nov 20th, 2007, 6:47pm » |
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nop, I think the beast likes to play tricks on us  unless you had something to eat or drink that triggers it. like alcohol, smoke, MSG, etc.
At my worst I had 3 hits in a day all during the night, one after the other...but Thanks God those are not that frequent..I count my blessings..but when I have them that means it is the peak of the iceberg and everythng starts getting better after those few days.
Wishing you the best!
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ski2k
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Re: I thought I was free...
« Reply #16 on: Nov 20th, 2007, 9:01pm » |
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I've had similar back-to-back hits like that. WHen I hit the peak of my cycle, it's not uncommon for me at all to get them, one right after another, all day and night, without more than 30 minutes between. My ex wife counted them a few times. She counted 15 of them one day (not including the night hits, as she was sleeping). It's no fun at all!!
Other days, I would get some that would last longer.... Much longer. I'd only get 4-5 of them, but each one would last over 2 hours. Get about 20 minutes to an hour relief, then get hit again. I think my "record" was 4 hours, before the E.R. drugged me up enough to knock me out. Kinda hard to recover from when they come on like that.
You're not alone! Hang in there!!
Adam
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dannyandcindy
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Re: I thought I was free...
« Reply #17 on: Nov 20th, 2007, 9:09pm » |
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I quit smoking almost 18 years ago, do not drink while we are out on the truck (8 weeks or more at a time), and no MGS that I am aware of for some time. Most Chinese restaurants say they do not use MSG now, and we rarely get to eat in restaurants.
I suspect that aspartame may be a trigger for me, though I have only seen it mentioned in one place on the site so far. No more diet sodas. Tension is definitely a trigger for me. Although I have had no unusual stress for some time. (except for the HA themselves, of course)
Thank you all for your help, I am learning so much. Many good things are coming out of all this communication and people who may have been hopeless are finding help.
The RC seeds may not be an option for me though. I suspect none of you with a US or CA flag by your name wants a trucker "trippin" around North America. The feds would probably frown on my carrying some hallucinagens in my pocket.
"Sorry officer, they are just in case I get a headache."
I do plan on getting some taurine suppliments. My energy drink of choice, XS Energy, does not have taurine in it.
Also we are looking for a neurologist in Colorado who can see me without a referral.
It is great to have direction in this battle.
Danny
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Rosybabe
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Re: I thought I was free...
« Reply #18 on: Nov 21st, 2007, 4:33pm » |
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with this link you can see the list of recommended Doctors in Colorado, I don't know if they accept patients without a referal but it is a start...
http://www.ouch-us.org/chgeneral/doctors.htm
Good Luck and you can also try with Kudzu, it is over the counter and you can find it almost in any vitamin store.
Lots and lots of pain free time!!
Happy Thanksgiving!!
Rosy.
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thomas
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Re: I thought I was free...
« Reply #19 on: Nov 21st, 2007, 4:54pm » |
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Very neat blog. You guys should try to get a run through Davenport IA in January.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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dannyandcindy
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Re: I thought I was free...
« Reply #20 on: Nov 23rd, 2007, 12:05am » |
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Thank you for the referral list Rosy, I have been wading throught chs.com and have not had much chance to look at the ouch website yet. This is great!
Thank you for the compliment on our blog, thomas. We get through the quad cities all the time. Is something happening in January? (Other than amazing ice storms?)
God is so good. We have been planning to spend thanksgiving with Cindy's family and have been praying that I would not get a hit while we were visiting with friends and family. (The turnout was 112 people, THE annual social event for the family) I had a couple of shadows during the day, but nothing anybody would notice (except Cindy). Then we went to Cindy's parents house after the event to watch a movie.
WHAM! K7 in about two minutes and rising fast. I went and grabbed three energy drinks. I usually do not like to talk about any illness and consider it a victory if no one notices a headache, a bruise, a compound fracture, missing limbs, you know. Cindy says it is a guy thing. Anyway, this board has really helped me learn to communicate and to ask for help. We had talked a little about me being in cycle with Cindy's folks and some of the preventative and abortive meds. Cindy's Dad asked if I wanted to try some O2 from his welding rig to see if it would work. What the heck, I had already read the part on the site about using O2 without a mask and we headed out to the shop.
It worked in about four, FOUR, 4 , minutes! Yee-haaa. Afterword Cindy brought up that we had been praying for no headaches, but if I would not have had a hit we would not have known for sure if O2 would work for me. Yea God!
O2 sure seems to have less side effects than any other abortive than caffeine, we are glad to test it.
Thank you, thank you, thank you,
Danny
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Jonny
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Re: I thought I was free...
« Reply #21 on: Nov 23rd, 2007, 12:30am » |
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on Nov 19th, 2007, 9:15am, dannyandcindy wrote:| I am about an hour into a k8 now. caffiene has not touched it. not typing very well. |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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chewy
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Re: I thought I was free...
« Reply #22 on: Nov 23rd, 2007, 10:17am » |
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Pain level 8
Time to scream, yell, curse, head bang, rock, whatever work's
Quote:| I am about an hour into a k8 now. caffiene has not touched it. not typing very well. |
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My Kip 8 must be very differant from yours,
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RichardN
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Re: I thought I was free...
« Reply #23 on: Nov 23rd, 2007, 9:33pm » |
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Hi Danny
So very glad the 02 looks like it's going to work for you. It's my only abortive and I go nowhere without it.
As soon as you can, order a clustermasx (about $25).. even more effective and comes with mask, two different length mouthpieces (which might be useful when driving), plus extra length hose and extra bags. It's designed by and for clusterheads and guarantees 100% 02.
Even though you and your lady are team drivers, I assume you still have to spend 4-5 hrs a day in the truck stops. Have you noticed hits occuring during or after a truck stop layover? I ask, because besides alchohol, exhaust fumes are/can be a trigger for me . . .just curious . . .and (considering your business), not sure what you could do to avoid if indeed this was one of your triggers.
Congratulations again on the 02 success.
Keep the rubber side down,
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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dannyandcindy
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Re: I thought I was free...
« Reply #24 on: Nov 25th, 2007, 7:37am » |
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on Nov 23rd, 2007, 10:17am, chewy wrote:| My Kip 8 must be very differant from yours, |
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I suppose you both are right. I was not exactly rational at the time. The idea of a scale of any kind is that one Kip 8 is not significantly different from another
Maybe you can help me figure it out.
Remember, I am not home when these happen. Cindy and I are on the truck 320 days of the year or so. We were parked on the side of a road in Pasadena CA in a light-industrial area, waiting for our trailer to be loaded in a facility there. I had been asleep about 45 min when the HA hit. Cindy needed to sleep so she could drive later. I could tell right away it was going to be a bad one, so I got out of the sleeper before I started thrashing around.
In the driver's seat I took about 10 asprin with three energy drinks. Rocking back and forth in the seat, I alternated pinching my left trapeziod muscle between the thumb and forefinger of one hand, then the other, and pressing the heal of my left hand into my left eye. I was bouncing my legs up and down on my toes and trying not to moan for about five minutes. The caffeine did not seem to be helping and I was really getting frustrated, the pain was ratcheting up instead of down. I took another energy drink with five more asprin. and got out of the truck, around to the passenger side, and got on my knees on the sidewalk and took some frustration out on the truck's step. I don't think anyone saw, but I was definately getting to that place where the world fades away a bit and it is just you and the pain. There was some light in the sky, but it was still pretty dark.
No relief from the caffeine, I wanted to try some coffee. I keep a coffee pot in the truck, but I could not focus enough to get it made and be quiet at the same time. I drank another energy drink and started pacing the sidewalk.
Tears were running down my left cheek, snot production was full force. The hot poker was behind my left eye and in my forehead. Electric cables jolted the pain down into my jaw, my teeth, and out into my shoulder. the muscles on that side were rock-hard and stiff lumps were growing near my spine on the back of my neck.
I could not keep from moaning and sobbing, and started up a monolog, mostly under my breath as I stalked up and down the sidewalk. I'd go to a lightpole and hit it with the side of my fist or lean in and tap my temple against it for a bit, then turn and stalk back the other way.
"STOP IT" is my favorite (articulate) cry, but I really did not want to go that far. At least not at first. I was getting way past the point of caring what I must look like, up and down the sidewalk like someone with a combination of autism and turets. Then I realized that it was lighter now, and someone had crossed to the other side of the street to pass me.
Fine. Great. Everyone is against me. I considered just pitching a fit in the middle of the street until the cops came and knocked me out. A billyclub to the side of the head would fit the bill perfectly.
Instead, I got back in the truck and turned on the computer, hoping for some miracle answer on the message board. I could not focus, though. I could not stay quiet. Sure that it must be near the end of the three hours my HA usually last I looked at the clock while the computer came up. Less than an hour. A feeling of serious desparation ran through me and I sobbed uncontrollably for a few minutes.
Cindy woke to me rythmically hitting the steering wheel with the side of my fist grunting out an expletive with each blow. At least she was awake now and I could have the sleeper to myself to thrash around in like ususal.
I know that pain and the emotions that come with it are hard to convey to anyone else. Looking back on it I know that I have had worse pain, done stupider things.
If I offended anyone by claiming a Kip 8 when this may have been a Kip 7 or less, I apologize. I appreciate that people do not try to outdo each-other here on this site, and that is a valuable culture to have when discussing such a serious issue. I would not want to unintentionally be downplaying someone else's pain by thinking mine is worse than it really is.
But I am new here. I am still learning. What would you say I had that morning, more like a Kip 7 or so?
Danny
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Any man can work when every stroke of his hands brings down the fruit rattling from the tree... but to labor in season and out of season, under every discouragement... that requires a heroism which is transcendent.
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