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Topic: GP just said "CH is Migraine" (Read 1175 times) |
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rubberplant
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GP just said "CH is Migraine"
« on: Oct 19th, 2004, 6:46am » |
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Just saw my GP for a follow up on my epilepsy.
By the end of the meeting he was talking about my CH. He was really talking about migraine. I kept referring to Cluster Headache and he then told me,
"CLUSTER HEADACHES ARE MIGRAINES" !!!!????!!!!
I almost walked out at this point, but thought no, I will challenge this. I explained that my neuro (someone in the medical profession who bothered to specialise in something other than colds and flu) had diagnosed me with cluster headaches after a 40 minute discussion about the pain I feel. Not after a 2 minute discussion about my epilepsy.
edit* then he told me that being a freelance photographer was stressful and that was why! *edit
Why, Oh WHY are General Practitioners so fucking inept!
Sorry for the rant,
an extremely angry,
James 
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| « Last Edit: Oct 19th, 2004, 6:47am by rubberplant » |
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clarence
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Re: GP just said "CH is Migraine"
« Reply #1 on: Oct 19th, 2004, 6:54am » |
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I am so sorry that your doc is inept. That is the most frustrating thing in the world. Either request he not be condescending and show an inability to listen, or don't go back to him.
Sorry bro,
Casey
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rubberplant
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Re: GP just said "CH is Migraine"
« Reply #2 on: Oct 19th, 2004, 6:58am » |
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thanks Casey,
I'm going to ring the neuro's secretary and see if I can get a copy of the letter. The GP hasn't received it yet. That might help if he reads that.
James
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Bob_Johnson
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Re: GP just said "CH is Migraine"
« Reply #3 on: Oct 19th, 2004, 8:29am » |
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Under an earlier classification scheme, clusters were classified as a sub-type of migraine--so old learning is likely still operating.
Two or three years ago, one of the leading headache docs in the U.S. said that about 40% of U.S. docs have very little or no training in Dx/treating headches. If this hole in their training/experience is combined with a personality which is closed to accepting new information or info from their patients--well....
But try and be understanding that GPs have to treat the whole world of medical issues and it's an impossible task! The number of medical specialities bears witness to the volume and complexity of medical information out there. How can any one person know everything?
The litmus test for me would be, is this doc opening to learning? Is he willing to accept legit, medically based information which I'm willing to offer him? If no, then find a new doc. If yes, then help him to help you.
Obviously, having a headache specialist is best, but that's not an option for many people.
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Bob Johnson
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rubberplant
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Re: GP just said "CH is Migraine"
« Reply #4 on: Oct 19th, 2004, 9:20am » |
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Your right Bob,
And I apologise sincerely to every GP that is informed and does understand the differences with types of HA.
I believe what you said about the GP being of the "old school" and bundling the two together is a problem. What want to tell these people is that I suffer from both. Migraines quite infrequently but they hurt a completey different part of the head.
It's the difference between a pain being dull and in your head and the world collapsing around your eyeball on your face!
I apologise again for insulting anyone,
James
<edited for inept spelling 20th October, still fuming!
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| « Last Edit: Oct 20th, 2004, 6:02am by rubberplant » |
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don
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Re: GP just said "CH is Migraine"
« Reply #5 on: Oct 19th, 2004, 11:42am » |
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Get a new GP. If he is outdated in the headache field I would wonder what else he is outdated in.
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Bob P
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Re: GP just said "CH is Migraine"
« Reply #6 on: Oct 19th, 2004, 11:52am » |
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Last cluster I had a neurologist who told me clusters were migraines and gave me a list of foods to avoid. I fired him. He now runs our towns only headache clinic and probably still thinks clusters are meegraines.
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Bob_Johnson
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Re: GP just said "CH is Migraine"
« Reply #7 on: Oct 19th, 2004, 12:06pm » |
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Oh, James, you are in trouble! <bg>
One of the leading headache docs in the U.S. labeled as "cluster-migraine" a sub-type of cluster in which elements of both types appearing in the same attack. Your poor GP won't be able to handle that one!
But don't apologize. Your criticism is appropriate even if all too commonly needed.
Don: The reality is that docs are out of date the day they graduate. Their speciality training isolates them from the broader developments in medicine even more and quite segregates them from other specialities. It's a terrible problem that the more they know about their specialty the more impossible it becomes to be the all-round doc we expect and want. Every time I encounter this issue, the more I value my primary care doc's willingness to let me set the tone for the treatment of my clusters. He is one of those uncommonly open and receptive physicians whose ego is not challenged by his ignorance.
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| « Last Edit: Oct 19th, 2004, 12:09pm by Bob_Johnson » |
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Bob Johnson
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Bob P
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Re: GP just said "CH is Migraine"
« Reply #8 on: Oct 19th, 2004, 12:53pm » |
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Bob,
That's where I wound up last time. After firing the neuro, I went back to my GP, who admitted not knowing about clusters, and proceeded to tell him what I wanted. I gave him short, easy to understand articles on Ch with the O2, Imitrex, and verapamil highlighted. Basically I did the prescribing and he signed them. Worked pretty well.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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don
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Re: GP just said "CH is Migraine"
« Reply #9 on: Oct 19th, 2004, 1:55pm » |
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Quote:| Basically I did the prescribing and he signed them |
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Me too.
I have a neuro who agrees that as the sufferer I know what works best. Lucky me.
I have a new, young GP who wants to learn about CH and is willing to fill in any med gaps I might encounter. Not likely though. My neuro wites a months worth of meds for me and post dates all the scripts so I never run out. Big time lucky me.
If you dont have anything close to what I have just described I would start lookin now and fire your current Docs when you find a good one.
Life is to short to be battling pain without help from competant Docs.
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| « Last Edit: Oct 19th, 2004, 1:56pm by don » |
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thudpucker
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Re: GP just said "CH is Migraine"
« Reply #10 on: Oct 19th, 2004, 4:09pm » |
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The more of these stories I read, the more I feel blessed that my GP (an internist, actually) got it in one.
He confirmed that I wasn't exhibiting any neural symptoms, then said, "Sounds like cluster headaches. Check the web."
And here was the first hit.
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thebbz
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Re: GP just said "CH is Migraine"
« Reply #11 on: Oct 19th, 2004, 10:20pm » |
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Here Here for the doc that listens. They are out there but tough to find. Once found we as a team reduced my episodes a year in half. 
BB
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Tom K
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Re: GP just said "CH is Migraine"
« Reply #12 on: Oct 19th, 2004, 10:29pm » |
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Smack him in the head with a tack hammer and ask him if that is a meegraine.... 
T
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| « Last Edit: Oct 19th, 2004, 10:29pm by Tom K » |
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rubberplant
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Re: GP just said "CH is Migraine"
« Reply #13 on: Oct 20th, 2004, 6:08am » |
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Hi guys,
Firstly thankyou so much for your support. I'm just so glad that I am not in Open Cluster Season at the moment as that would probably finish me.
Are there any articles in particular that would be worth my while printing and producing to my GP, who I will not be with for much longer, and any new GP who may have been trained before the Americas were even found!!!
I spoke to the secretary of my neuro who assured me that the letter will be posted today and that I am to be CC'd a copy. So with a bit of luck I can walk in next time with neuro's letter to help.
Thanks again
James
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Bob_Johnson
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Re: GP just said "CH is Migraine"
« Reply #14 on: Oct 20th, 2004, 6:44am » |
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Re. material for your doc: hit OUCH button (left) and then go to the UK OUCH.
Explore: WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
If you can afford it, this book is written by a doc for docs.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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don
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Re: GP just said "CH is Migraine"
« Reply #15 on: Oct 20th, 2004, 12:23pm » |
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Quote:| Smack him in the head with a tack hammer and ask him if that is a meegraine. |
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Even better.
Stick him with a tack and say "thats a Meegraine"
Then smack him with the hammer and say "thats a cluster. SEE THE FUCKIN DIFFERANCE?"
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Charlie
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Re: GP just said "CH is Migraine"
« Reply #16 on: Oct 20th, 2004, 3:38pm » |
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Quote:| edit* then he told me that being a freelance photographer was stressful and that was why! *edit |
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Bullshit!
I have epilepsy too and over the years have been the patient of 7 neurologists and know many more. Not one of them told me that stress is a factor in developing CH and many of us, including myself aren't affected by stress in bringing about an attack. My seizures are another matter. Stress is definitely a factor. There also is no relationship between CH and epilepsy.
My CH, which I had for 22 years has been gone for 13. My seizures, which I've had for 45 years are still around.
Good luck with your doctor. I suggest a cattle prod and giving him a printout of Simon's letter:
http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/no te_colleagues.cfm&added=04/01/04&code=CB
Charlie
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ArCane
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Re: GP just said "CH is Migraine"
« Reply #17 on: Oct 20th, 2004, 11:37pm » |
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on Oct 20th, 2004, 12:23pm, don wrote:
Even better.
Stick him with a tack and say "thats a Meegraine"
Then smack him with the hammer and say "thats a cluster. SEE THE FUCKIN DIFFERANCE?" |
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Ive wanted to do something like that a time or two. Some doctors just dont understand. It would be nice to show them what we are going through. Of course doing so and not killing them would be difficult.
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rubberplant
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Re: GP just said "CH is Migraine"
« Reply #18 on: Oct 21st, 2004, 5:50am » |
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Thankyou so much,
When I have read the letter from the neuro I will make a new appt.
In the meantime, the tack and hammer approach may be worth a go!
Stress is one of those things that I strive on. There has to be a base level of stress in life to function. I'm not talking about a level of stress that has you stuck in the corner as if you have just tried pure adrenalin, a la Fear and Loathing in Las Vegas!
I mean there have to be problems to solve!
I agree stress and epilepsy are in love with each other. With me we found emotional stress a great trigger for seizures. but never have my CH appeared because of a bit of stress.
Bob_Johnson and Charlie thankyou for the info. Being armed with a little knowledge always helps!
Best Wishes and thanks all again,
*trundles off to GP with books, printouts, a tack and a hammer*
James
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pubgirl
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Re: GP just said "CH is Migraine"
« Reply #19 on: Oct 21st, 2004, 6:33pm » |
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James
From my experience of UK GP's, don't mention the word " Internet", it makes them cross.
The article they sit up and take notice of is the one called "Ch article" on the OUCH Uk site as it is written by Professor Goadsby and his team at the London Institute of Neurology. Even the most arrogant UK GP usually is prepared to accept that this source is impeccable.
Click on the link below for the article.
http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498& ;Section=Feature
Our advice to sufferers is to send the article to the doctor in advance with a polite note asking that they read this before your next appointment. Then give them time to get off their high horses and read it before you see them next.
Wendy
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| « Last Edit: Oct 21st, 2004, 6:34pm by pubgirl » |
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rubberplant
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Re: GP just said "CH is Migraine"
« Reply #20 on: Oct 22nd, 2004, 12:44pm » |
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Thankyou wendy,
Thankyou all!
I'm now sitting here with fury running through me and tears from the knowledge that you are all there with me!
It's such an annoying situation to be in to talk to a GP and find that soon as you sound as if you have done ANY research, they just smile a little wan smile at you, as if to say, " That's nice, you think you have an understanding of medicine. "
Bollocks!
All we want to say is, we aren't looking to quacks, like this pepper spray business and our friend who keeps reappearing to ask to cut our heads open (Ali, is it?). We are trying to help ourselves.
Aaaaaaaarrrrrggghhhh!!!!
So glad I'm not in cycle at the moment, I'd be looking for a way out!
Thankyou again,
Gonn go and cry now then play with my boy before he goes to bed. Bless him, 15 weeks old and he sleeps through the night! Better then some of you are doing at the moment, I guess.
Best Wishes and PFDAN to all.
Aaarrrgghh! Bollocks!
James
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sandie99
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Re: GP just said "CH is Migraine"
« Reply #21 on: Oct 28th, 2004, 1:17am » |
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Oh crap! Another one of those!
Let's just hope that in time, one by one, we can educate them out of that false belief!
At least your neuro knew the difference! One I met wanted to analyze my CH by using the ordinary HAs I had at the age of 9 - and I'm 24 now! Like I didn't know the difference between a normal HA and a CH attack... 
But then again, what can I say? I can't even get my MOM to understand that CH and migraine are not the same thing.... 
Best wishes & PFdays,
sandie99
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CH happends, Live anyway! PF days to us all!
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dafreeman
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Re: GP just said "CH is Migraine"
« Reply #22 on: Oct 28th, 2004, 1:33pm » |
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I found Dr#3 through "http://www.clusterheadaches.org/doctors.htm". He's been very, very helpful. When I visited him, I brought a folder full of info from this (and other) website(s). Dr.#2 couldn't have cared less what info I had. Dr. #3 looked it over & then brought in his reference materials and we compared notes. It was great! Then he started prescribing my requests. I have been doing the prednisone taper for 2 days and have not had a CH since (although I understand this PF period can end as the taper decreases). My longest PF time in 2 weeks. I'm so impressed with how much I've been helped through the information provided through these websites and the discussions! 
I know this cycle would have been much tougher without them. 
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hoosierdaddy
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Re: GP just said "CH is Migraine"
« Reply #23 on: Oct 28th, 2004, 2:42pm » |
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Dafreeman,
I can relate. Once we rulled out sinus problems my GP listened to me and told me he thought I had CH, not knowing what that was I thought he was wrong because I couldn't imagine that anything called CH could cause as much pain as I was going through. He insisted that I see a Neuro and started me on Prednisone taper, Vapramil and Trex pills. I found that as long as I was on a high dose of Prednisone I was PF but damn I could eat alot. I couldn't see a Neuro for 6 weeks so my GP wanted to see me every 2weeks until I got in to see him. on the 2nd visit I had just finished the taper and started back with the pain. I found that the Trex didn't work fast enough. He called the Neuro while I was in the office and got him to see me the next buisness day. Also the Neuro told him to up my Vapramil, repeat the Prednisone at 20mg sustained dose for 5 days 3 times a day and gave me Zomig Spray.
The advice I got from him was to find a Neuro that if you met out on the street you would like to have a conversation with. I think I found one. The neuro listen to me and understood what I was going through, gave me Trex injection kit and 2 occipital nerve blocks. I'm not sold on the Depakote but everything else is good.
I am not sure what preventitive works best for me yet and I don't know if the nerve blocks did anything because I was on the prednisone for 4 days after. I was PF for 8 days before I had to use my first Trex injection and damn that worked well, 5 min to abort. I wish I could stay on Prednisone forever.
Good luck
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don
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Re: GP just said "CH is Migraine"
« Reply #24 on: Oct 28th, 2004, 4:54pm » |
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Quote:| Bless him, 15 weeks old and he sleeps through the night! Better then some of you are doing at the moment, I guess. |
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True but at least I'm not wearing rubber pants anymore.
(Well sometimes)
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