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Title: Why???? Post by Salvelinus on Aug 18th, 2005, 8:45pm I've asked myself that question way too many times. Has anyone else? I guess I HAVE to have a reason. These attacks MUST be happening to achieve an intended purpose. I don't try to hide my faith in God, but I also don't think I have all the answers. For those of you who do belive there is a master plan for the universe, how do you think we all fit in? Part of my answer happened almost 5 years ago. After 12 hours of labor, and 4 hours of continuous pushing, my wife was rushed into an emergency c-section. The epidural had long worn off, and they were unable to get it started again before the surgery. My beautiful wife had surgery without anesthetic. :'( All I could do was try to keep her distracted (thank GOD for breathing techniques), and understand. I knew then what she was going through every time I got hit hard. My daughter came out fine, and my wife was given an "amnestic" drug, so she remembers nothing. Wish I'd had one. :'( Anyway, things were OK after that. :) The second part of my answer came after I found this board, and all of you. Each of you is beautiful, and together, you are all awesome. Hopefully I have endured this demon so I can help someone else, even a little. Anyway, I'd be very interested in hearing your stories. Why are you going through this? Is there a reason? I try not to think I'm being punished, but that thought sneaks in more often than I'd like to admit. God bless you all with lots of PFDAN's. Namaste, --Scott |
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Title: Re: Why???? Post by gymnasticsmommy on Aug 18th, 2005, 9:28pm I am VERY new to these headaches, 3 weeks, and I am finding that I am asking that question every time one hits me. I don't think there is a why except to test my endurance for something. Don't know what, but i have been tested a lot in my adult life. I know that. Here is my story. Born and raised in Ca everything fine, etc. etc.. Then when I was 17 a suburban going 100+ mph ended the world I knew! Serious head trauma, broken back, neck, hip, and other misc bones. After 3 days in a coma, 4 months in the hospital, and a year of physical therapy, The only major problem was my grand mal seizures due to brain injury. I learned to deal with those okay and go on with my life. I met and married the love of my life, and had 3 beautifull daughters, which made 7 with my four stepdaughters. When I was pregnant with my third and last daughter I developed three hernias because she was so big. That may not sound too bad but the last 2 months of pregnancy they just got bigger and bigger and tore quite a bit of muscles. I refused to deliver early for her sake and stayed on bedrest and endured the pain. Untill my appendix broke! Then I had no choice. I had two surgeries to repair the damage and I have a very healthy and beautifull daughter with no health problems because of my choices. After some recoup time life was back to normal and then this hits me! I am a strong person who can deal with a lot but I am very close to giving in! I know that it is said that God doesn't give you more than you can handle but I think maybe he has me confused with someone else. I don't feel that I am meant for something special. The best I can tell, my job is to raise my 7 beautifull daughters and that they are meant for greatness! So again I say I don't know the answer to why but I am continually looking. Maybe it is because people who endure this kind of pain can be so empathetic and help others so well. Look at the members of this board! You guys help each other so much even if it is just a prayer or well wishings. To know someone is think of you and understands means more than one can imagine! Before I found this board I could not find anyone who understands. My boss said "Its just a headache, tough it out and come back to work" I hope that any of this helps. I am usually much more optomistic and helpfull but I am at the end of my endurance right now. Thanks for listening! Mommy |
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Title: Re: Why???? Post by E-Double on Aug 18th, 2005, 11:20pm here's a question...... Why ask Why? Sooner ya answer that one and get over the "Why" or the "When will it end"....... The sooner ya take your life back and live it! good luck! E |
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Title: Re: Why???? Post by nani on Aug 18th, 2005, 11:30pm Why not? What makes me so special? At least it won't kill me. |
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Title: Re: Why???? Post by kissmyglass on Aug 19th, 2005, 12:32am Never asked myself "why me?". Go find a Scleroderma paitent, go see how a Quadrapledgic has to live day in & day out, go to the childs burn unit your local hospital....We don't have it as bad as it could be.... Kev |
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Title: Re: Why???? Post by Sandy_C on Aug 19th, 2005, 7:37am I've never asked "Why is this happening to me" in the context that you refer to - as in "what did I do wrong to deserve this punishment". When I began my very first cycle, I did ask why is this happening in the context of what is wrong with my body? Have I got a brain tumor? An aneurism, like my mother? Am I dying? Once I found out what I had, I've never asked why about it, it just is. It's a part of my life now. Life has given me many, many good things, and many bad things. I've never asked why I deserved the good things, so why should I question why I deserve the bad things? Sandy |
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Title: Re: Why???? Post by floridian on Aug 19th, 2005, 10:09am I'm the heretic that believes that God is all good, but not all powerful. That does a better job of explaining why bad things happen to good people that the intricate doctrine of free will. From a more concrete bio-evolutionary standpoint, we are projects in development. This development occurs through random mutation, some of which advance the species, but most of which are neutral or harmful. And the human mechanism is so complicated that it glitches in some very bizzare ways, including CH. If you get dealt one set of mutations and life situations (ie, head injury or jaw problems, etc) then the cluster glitch develops. Another set of genetic cards plus a staph infection may trigger psoriasis. |
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Title: Re: Why???? Post by LadyElaine on Aug 19th, 2005, 11:16am I don't ask Why me, cause I wouldn't wish this on anyone. I am just Thankful it wasn't my children or my husband who have to endure clusters. I do understand the wanting to know what caused them. We figure if we can find what caused them , we can stop them. . The one thing I learned from clusters is You have to do the research on your own. You can not leave it up to your doctor. You have to research everything. Read read read. Then weight the options. Pick what is good for you. Its that way with any illness. I research every medication a doctor gives me for anything. Your lucky in so many ways. Years ago the only thing doctors knew or thought they knew were, it was a MAN's illness, and o2 helped. Now it is known that it is men and women. Now there are preventive meds and meds to abort them. Not only are you lucky in that most doctors know this but you have ch.com and the people here to help. I would say your blessed. Some of us had to go this alone for years, we were under the inpression only a very few people had this. Some of us went for years before we knew what it was. I lost my teeth, given shock treatment. I went through hell on top of clusters. Your really blessed if you look around. You can't let clusters control you. If you do the cluster wins and you lose. PS you have a strong wife. Your very special and strong to see her through that. You will be fine! ;) |
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Title: Re: Why???? Post by vig on Aug 19th, 2005, 11:53am count your blessings, there ARE worse things to have... http://www.cff.org/home/ :'( oh, and by the way, you are NOT being punished. flush that thought right out of your mind. oh, and GMommy, you sound like quite a trooper! |
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Title: Re: Why???? Post by kimmeesue on Aug 19th, 2005, 2:05pm I am presently reading "The Problem of Pain" by C.S. Lewis. It addresses this whole issue from both a Christian and philosophic perspective. I recommend it highly. Kim |
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Title: Re: Why???? Post by Frank_W on Aug 19th, 2005, 2:46pm In contemplation, at the very beginning of this last cycle, I did ask God why. Before the cycle really ramped up, and I was going to go this cycle without any meds, I asked, "God, why must I suffer with cluster headaches?" Within a few days of asking, I discovered the threads on kudzu that Floridian put up, and the results that Nani was experiencing. I went on to have the easiest, most pain-free and tolerable cycle I've ever had, in the eight years that I've been wrestling with the Beastie. But, "why me?" No.... I've seen real suffering. I've seen people with limbs blown off, young men paralyzed from the waist down, or from the neck down, and I've seen people horribly burned, and I've seen babies born without limbs, and I've seen parents grieving for the loss of their child. There are far, far worse things in this world than headaches. Be strong because you ARE strong, and giving in and giving up are simply NOT an option. "This too shall pass." /Raising right arm, hand in a fist Inner strength, mental toughness, spiritual victory. |
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Title: Re: Why???? Post by Salvelinus on Aug 19th, 2005, 7:38pm Thank you, everyone, for your responses. I appreciate your taking the time to reply. However, I think many of you may have misunderstood my post. Sorry if my post sounded like a whine of self pity. I suppose it could easily sound that way. That was not my intention at all. I have a wonderful life, and have been blessed far beyond what I deserve. Am I special? Hell, no. I do have my moments of depression, but I don't think that should be surprising or considered abnormal for anyone here. Why else would we need a support group? I am a thinker. I am always asking "why" about everything. I can't shut that part of my brain off, and I don't think it is a bad thing. I feel that there are reasons for everything, good and bad. I think we are artists, police, grocers, whatever, for a reason. It is also one of the ways in which I have successfully coped with stressful situations, including these headaches. I was curious to see how others cope. We all have to cope. I've had to find ways to cope for 18 years without any clue what was going on. I am just wanting to see how others try to put a positive spin on something which doesn't seem so positive. Believe me, I've seen people suffer as well. I work with them every day. I try to help them make the most of what they've been given. You know what? Many of them want to know why, too. I thank God every day for my health, family, and friends. I would never put myself on par with them. Trade my headaches for a stroke? Bilateral arm and leg amputations? Cancer? Clusters are bad, but not that bad. I've seen first-hand how those things can affect your life. About the suggestions of where to go to see people who are suffering, I've got one, too: Try going into a burn center. I worked in one for two years. You will never, ever see suffering like that, anywhere else. Me? I just need some space and a couple tools to help myself from time to time. I am very, very lucky. Anyway, sorry if I've offended anyone here. That was not my intention. I'd just like to know what goes through your minds, and how you deal with this. Namaste, --Scott |
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Title: Re: Why???? Post by yikes-another-one on Aug 19th, 2005, 8:05pm :) I try to stay positive, but everyone has their bad days too. I guess that knowing it will let up helps me hang in and the frustration factor helps me fight to enjoy every pain free moment I do get. we really are lucky. |
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Title: Re: Why???? Post by eyes_afire on Aug 19th, 2005, 9:52pm Hi Scott, Don't worry, no offense taken here. Quote:
I understand what you're getting at, but I have to be blunt... My opinion: CH sucks. They are inherently negative... there's NOTHING positive about them. They are brain malfunctions with no philosophical reason for being. And I can't be convinced otherwise. --- Steve |
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Title: Re: Why???? Post by jcmquix on Aug 19th, 2005, 10:07pm on 08/19/05 at 14:46:40, Frank_W wrote:
I read the begining of this thred and was going to respond, but Frank, you did a great job.. right here... Thank You PFDAN's To ALL !!! Charlie [smiley=me&mb.gif] |
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Title: Re: Why???? Post by Salvelinus on Aug 19th, 2005, 10:32pm Floridian--cool. I see where you are coming from. I won't get into a theological discussion here, but my view is similar to yours, though from a slightly different motivation. Something like, "This is the way things are because that is how I chose the world to be." |
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Title: Re: Why???? Post by Salvelinus on Aug 19th, 2005, 10:35pm on 08/19/05 at 11:53:46, vig wrote:
I do realize that, but I admit it comes into mind in the midst of the battle. on 08/19/05 at 11:53:46, vig wrote:
Amen to that! |
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Title: Re: Why???? Post by Salvelinus on Aug 19th, 2005, 10:37pm Kimmeesue, thanks for the suggestion. I'll check it out. :) |
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Title: Re: Why???? Post by Salvelinus on Aug 19th, 2005, 10:45pm on 08/19/05 at 11:16:20, LadyElaine wrote:
I remember saying something very similar once to a therapist who suggested that I stop some of my more active hobbies if they were giving me headaches. on 08/19/05 at 11:16:20, LadyElaine wrote:
You bet she is. I don't know how she deals with my clusters day in and day out. I always try to get up in the night as quietly as possible so she doesn't have to see those. About me, thank you, but she's the strong one. :) |
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Title: Re: Why???? Post by Salvelinus on Aug 19th, 2005, 10:48pm on 08/19/05 at 22:07:31, jcmquix wrote:
I agree . . . :) |
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Title: Re: Why???? Post by Salvelinus on Aug 19th, 2005, 10:56pm yikes-another-one: You bet. That is probably the biggest thing that gets me through an attack--I know it will end. I didn't always know that, and remember panicking at times as it hit 9 or 10. The single best thing that being diagnosed did for me was to calm me down during an attack. I finally knew that it didn't matter whether I rubbed my head just right, or did something wrong. I was going to have pain, no matter what, and it would end in a while. PS: thanks for the PM! :) |
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Title: Re: Why???? Post by Salvelinus on Aug 19th, 2005, 11:01pm eyes_afire: I've felt that way many times, but it didn't help me deal with it any better. Wonder if it has anything to do with positive thinking and endorphin release or reduction of tension or something? Whatever the reason, I try to stay as positive as possible now, and don't panic nearly as often now. To everyone I haven't directly responded to, thanks again for sharing your thoughts. :) |
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Title: Re: Why???? Post by IamAngel on Aug 19th, 2005, 11:04pm I went fishing last weekend with Hubby, 3 of my 4 kiddos, and 3 other family members. We were out on a boat at midnight when a CH hit me...by the time it finally went away I was so angry. Angry that this horrible monster was taking my time away from my family. I was asking the same question... WHY?? After giving it some thought, I was thankful that CH's were the only thing "wrong" with me....and thankful I was able to get on that boat when theres so many handicapped people out there who wish they could go for a boat ride. I still get angry but I see things a little differently now. ;) |
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Title: Re: Why???? Post by Jasmyn on Aug 21st, 2005, 5:52pm Ok, my dad married 3 times and had 2 children with cerebral palsy, one with heart problems, one with diabetes, one with epelepsy and one with Ch. We are 8 children and I am the eldest and I have the CH but he also has it. So WHY? Just because. I am the lucky one! Things happen in life, there is no guarantee and no reason. Just like all things in life, you cannot guarantee how long everyone will live and there's no reason for it, who's gonna love you for how long or a reason, if life is always gonna be fair or a reason if it's not...etc, etc. I rather ask myself why I am here. I still don't have a coocken clue! ::) But that's life and just sometimes I'm glad to be part of the mystery, the rest of the time I want to know how, where, when, what and who! That's just me and I don't think any god comes into this equation. That would just be insulting! ;) |
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Title: Re: Why???? Post by Salvelinus on Aug 21st, 2005, 9:10pm Angel and Jasmyn, thanks for your replies. IamAngel, hang in there. Enjoy the good times you do have. Jasmyn, that is one bad string of luck your family had. I can't say I'm sure why you say bringing God into this would be insulting, but I think I know what you're getting at. I just have a view that everything happens according to a plan, and that we are not privvy to that info. I see that, at least for those who replied, the majority just accepts that CH happens. I'm glad that point of view works for you, and I can see how it could help reduce some anxiety. I must say that in the beginning I felt the same way, but as time went on and I wasn't getting any better (I didn't fully comprehend what CH was until a few weeks ago), I decided that there must be SOME reason I was having this pain that no one could help me with. I think that most of the people I had seen thought it was all in my head, anyway (pun intended). Thank you all so much for your responses. I will think about what each of you has said. Namaste, --Scott |
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Title: Re: Why???? Post by marty on Aug 22nd, 2005, 7:35am Hi Y'all CH is a very "lonely" affliction. Most of us deal with it in private and shy away from contact with others for many reasons. If you see life as being good or bad, black or white etc, then it becomes very easy to fall into a state of mind where you feel like you are being punished. There are those who personify CH by refering to it as the beast, the devil, the demon etc and I see a danger in this; by not dealing with CH as a headache - no more, no less - even though it is the most severe headache there is, and making it a battle between good and evil we are inviting mental disaster. This issue have been on my mind for a while now and I have been reluctant to post it. My point is this; a beast or devil is bad and bring pain and suffering. God is good and being in his good graces will bring happiness and contentment and therefore, a person suffering must have done something wrong and is now being punished. A demon is also bad and the good is an Angel - same theory applies here. To be alone (because you are always alone when fighting a CH attack) and at the same time trying to figure out what you did wrong and why you are being punished takes away from your inner ability (strength) to deal with the CH attack(s) and you are more likely to give in mentally. Lack of sleep will add to this. I consider myself very fortunate in that CH is my only really painful affliction - the bones that I have broken are minor and due to my own stupidity. I still have penty to worry about but I will not let it become an issue of good or bad. I do believe in God and that he is almighty but there is also the part of us being made in His image and therefore I will deal with what comes for what it is and not worry about the why and why not. In other words, I have headaches, bad and scary headaches, but that is what I am dealing with - no more , no less. Marty |
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Title: Re: Why???? Post by Frank_W on Aug 22nd, 2005, 7:43am As for the positive things that can be gleaned from this condition: 1. Nothing is more humbling than deep pain. It shakes up our little status quo and forces us to take a good look at our priorities. Suddenly, that damn PTA meeting or the dishes in the sink don't seem nearly as important as spending time with your spouse, partner, children, or pets. Deep pain slows us down and forces us to take a good look at ourselves and our lives. 2. Deep pain is a clarion call to muster our inner strength and call forth resources that we previously didn't know we had. It spawns a deeper, truer self-knowledge and a realization of just how much we are able to endure. 3. Deep pain is like the drill that taps a well of sweet water. When we've been in deep pain, it opens our hearts to compassion, empathy, understanding, and care for our fellow man. 4. Deep pain sets our feet on the road to seeking answers. Whether those answers are spiritual, medical, physical, dietary, or any combination thereof, deep pain boots us into the river of life and gets us swimming with the current again. 5. Deep pain yanks our focus out of the dim fog of the unrealized future, or the constant backward-looking focus on the past and puts us right on the very needle's point of the present. 6. Deep pain opens our hearts to gratitude for the "ordinary" times. Because we are in extraordinary pain, the times when we are pain-free may feel like any other day to the average person, but to us, a single night of pain-free sleep or a day without having to duck into the bathroom with our palm jammed into our eye, is worth more than a king's ransom. The "ordinary" times become filled with extraordinary joy and a fresh awareness of the beauty around us. These are a few things I was able to come up with, off the cuff... Peace & PFDAN's, -Frank |
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Title: Re: Why???? Post by floridian on Aug 22nd, 2005, 7:51am on 08/22/05 at 07:35:25, marty wrote:
I'm glad you posted those ideas, Marty. This isn't a simple issue, isn't a right vs. wrong, one answer and only one answer. All of the posts in this thread are attempts to deal with our own situations, and a reasonable, polite discussion considering many perspective is a good thing. Kimmeesue: got any of the general ideas from C.S. Lewis to put up here? I read a lot of Lewis a while back - he is an excellent writer, very logical within the framework of his faith. |
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Title: Re: Why???? Post by E-Double on Aug 22nd, 2005, 11:49am Excellent post Marty!!! |
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Title: Re: Why???? Post by kimmeesue on Aug 22nd, 2005, 12:08pm on 08/22/05 at 07:51:45, floridian wrote:
Whew, that's tough. To oversimplify in the extreme, pain serves as the antithesis of all that is good and without which we would have no real experience of pleasure, joy, etc. Pain, as someone else noted, is quite humbling. It is a great equalizer. No matter our station in life we suffer and our sufferring is not diminished by wealth, power, family, etc. Those things may affect how we deal with our pain in terms of resourcesand support but in no way affects the pain or the nature of the pain itself. But he goes into the whole free-will, original sin thing, too, which is meaningful to those who are "believers". I'm only in the third chapter, about halfway through. If anyone is interested I will post further on this when finished. Kim |
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Title: Re: Why???? Post by Salvelinus on Aug 22nd, 2005, 9:31pm Kim--please do, and thank you. Floridian--I agree. Marty--Great post. As I just said in a PM, before coming here, I had never thought of my CH as a "beast," or felt I was being "hit" by something. Even the term "shadows" has a dark, evil ring to it. On the contrary, I've always discussed my pain in a very factual manner. Once, after being referred to a biofeedback therapist, she asked me to "draw" my pain. I sat there and stared at the paper--I had never thought of it in terms other than severity, quality, location, etc. I ended up drawing my head with a red-hot poker through it, and feeling very sheepish for drawing that. On the other hand, I very much understand why people use those terms. This condition does foster victimization. Frank--WOW. Awesome. I'm speechless. You thought of that "off the cuff?" Every line is so true. That was EXACTLY what I was looking for, but couldn't articulate--thank you so much! Namaste, --Scott |
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Title: Re: Why???? Post by kcopelin on Aug 22nd, 2005, 10:00pm For twenty years I have fought, pleaded, cried, whined and nearly suicided over these headaches. I honestly thought God hated me. He doesn't. I have clusterheadaches. Frank-your post brought tears to my eyes-thank you bro. I have started thanking God that I have to stop the dizzy ride and get off sometimes and that He's always there and always will be. kathy |
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