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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Yes, I get that completely.  I'm tenacious, really. It's what's got me through the truly bad times, you know? One of the things that my diagnosis did for me was make me realize what's important in my life and to fight for my ability to live my life the way I want to. Theatre is integral to my well-being. I lived without it for a few years and it is not an experience I care to repeat. Something in me dies without it. So, now, instead of one show after another while working fulltime, I keep it to one in Autumn and one in Spring. Warm hugs,
Kat
A life lived in fear is a life half lived. "Strictly Ballroom"
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
Whew! Pediatric rotation. I can't imagine how you manage that. You go!  It's fun to have another swimmer on the FITNESS TEAM. I think that makes 4 of us. 
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: Mar 2008
Posts: 3,233
Imperial_AS_Kicker
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Imperial_AS_Kicker
Joined: Mar 2008
Posts: 3,233 |
This is definitely my goal, though I have had to redefine "full active" in the past couple of years. Me too, I used to compose music for TV, mostly these days, though, I record and edit footsteps! (not without stress either!) Foam earplugs work great for loud situations and movies, because they filter out the extreme high frequencies but let you hear the middle and low tones. Interesting! Have you had your ears tested? Wonder if you have an unusual frequency curve that makes you more sensitive to high frequencies?
Dow
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Joined: Mar 2008
Posts: 3,233
Imperial_AS_Kicker
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Imperial_AS_Kicker
Joined: Mar 2008
Posts: 3,233 |
i remember you sharing the title of a book with me, "A Headache in the Pelvis". wonder if while my migraine responses to stress, both good and bad, are pain in my head, if your response is this response that you describe. About 300 pages into that book, it finally dawned on me why the author chose that title, "A Headache In The Pelvis" It was his way of introducing his readers to thinking about their pain in a different way. Everybody is familiar and accepts the idea that we can get a headache from our thoughts, struggling with a math problem, worrying about an upcoming event, thinking about problems at work, listening to loud music, etc. But when the suggestion may be made that pain located in other parts of the body, the pelvis, the back, the stomach, etc, (all directly connected to your brain through a neural network) could similarly have a mental component, brought about, or intensified by our thoughts, then suddenly you are very likely to get a quick: "Oh no, that is NOT possible, there is no way this pain HERE is in my head..." as if you have somehow accused them of being psychologically imbalanced or something...and then they return to their previous assumptions, preferring to believe that all their symptoms can be completely explained in purely mechanical terms... a shame I think In any case, I think "Headache In The Pelvis" is a really good title!
Dow
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
another sort of example i can give. from way back, could always feel my stomach get all gurgling from stress; that old butterflies in the stomach feeling before giving an important lecture, job interview, you know, the typical stuff. well also noticed that when my gastritis was really bad, it would wake me up at like 5 am and make me feel nervous and very wide awake. but if i took mylanta to calm my stomach, it would also calm the way i felt. just thought it very interesting that not only does nerves churn the stomach, but a stomach that is already churning will make one feel nervous. and how easy it was to put an end to both of those things with something as simple as mylanta.
i know you are talking about how the brain can make one feel pain, but i've also noticed how pain can affect the brain. and how treating the physical problem doesn't just make the body feel better, but changes the emotions, feelings, thoughts as well. think i've noticed that connection because of how quickly it can happen, like putting an ice pack on something extremely painful relaxes me, allows me to fall to sleep when i couldn't before, etc.
so think there are many approaches to attacking the problem, and the more tools we have in our tool box, the better.
think we can affect our body with mental tools (like deep breathing, relaxation techniques, etc), but can also affect our brains and emotions with physical tools like the examples i gave, if that makes sense, at least that's what i've found to be true.
think that while its hard for people to accept that the brain can affect the body, think its equally hard for people to accept that the body can affect the brain as well. think it goes both ways.
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Apr 2002
Posts: 12,465
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Joined: Apr 2002
Posts: 12,465 |
I might understand it but I am really not good at doing much about it! I'm even hesitant to reply to this Dow, because I'd hate to disappoint you. But how about another angle, rather than avoid them, I wonder if we can condition ourselves to not respond in the way that we do to trigger events? Have it both ways? If you can do it - more power to you!! I have tried and accept that I can't. My only chance lies in avoiding stuff that I recognise can be problematic for me. You won't catch me on a rollercoaster, ever - even though I used to LOVE them! And I also can't handle loud concerts any more. Well ok, I might make the odd exception..! What I have learned is to relax, pace, and go gently through things that I want to do, or may not have a choice in doing, because I've recognised that my response to some things is beyond my ability to control... there is a basic *primal* response that we I can't prevent, plus the disease itself is a real monster. I might be able to lessen the impact of something which is certainly helpful. Take my brother as an example. Like me, he used to get iritis attacks repeatedly. Not as often as me but sometimes as much as once or twice per year and I worried that his would become 'chronic' too. At the time, his job required that he had to fly to other cities to teach. Due to my own experience, I watched and noticed that his attacks seemed connected to his air-travel and so I suggested to him that flying might = stress = iritis. After all, part of plane travel includes physical stresses like crowds, noise, uncomfortable seating etc. but also emotional stresses such as, anticipation, anxiety of delays, missing family etc. Now my brother is a guy that operates entirely on logic (think Spock!) and after considering the possible tie, he began wearing earplugs to block out all noise that we are bombarded with on commercial flights, which not only improved his comfort (emotional and physical) but the result was positive and episodes of iritis reduced. Now, his work no longer involves air travel and guess what? He hasn't had an attack in, errr, probably 3 years now, and this despite the fact that he's a recreational pilot. So that's my answer: avoid stressful triggers and try to lessen (condition) the impact of the stuff I enjoy, because life is too much fun to miss.  But the truth is, even with all of the above, the only thing that actually stopped my attacks was Remicade and all of my tricks seriously pale in comparison. You have great thought processes to help you deal with this Dow  I bet it helps! mig
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
Interesting! Have you had your ears tested? Wonder if you have an unusual frequency curve that makes you more sensitive to high frequencies? It seems my hearing is simply superb. You know those irritating people that can hear the hum of the TV from the other side of the house? That would be me. I have dog hearing. Baaarooooo!!! 
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
i remember you sharing the title of a book with me, "A Headache in the Pelvis". wonder if while my migraine responses to stress, both good and bad, are pain in my head, if your response is this response that you describe. This has absolutely nothing to do with this thread, but the title reminded me of something funny. Imagine ~ 23+ years ago, after my friend and her husband had completed pre-marriage counseling with their minister. The minister asked them if they had any concerns or worries, and she said "No, just a little stage crotch". What?!? I kid you not, and she was so nervous she actually though she said stage "FRIGHT"! 
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
its equally hard for people to accept that the body can affect the brain as well. think it goes both ways. Boy howdy! I totally agree. That would be 100%.  For me: anxiety = demonic chocolate cravings.  depression = complete loss of appetite complete with gagging when I try to eat. Right now I'm a happy 10 lbs over weight and not eating chocolate. 
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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OP
Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865 |
Me too!  Avoidance is my answer.  Unless my grandsons are involved and then I will do anything except jump out of a plane. 
ANA+ RF+ Rh- HLAB27+ Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013 pulmonary edema w/ NSAIDS 2009
Movin' it so I don't lose it!
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