TED Community » Cynthia Timko

More About Me

I'm passionate about

Politics, religious studies, human rights,people, nearly all branches of science, why we are the way we are and why the universe is at is as, Unanswerably questions in general.

An idea worth spreading

Put a good, annotaated, non-partisan, pocket book Constitution, the kind Congresspeople are so fond of waving around, in every motel and hotel room along with the Gideon Bibles. These wold be free for the taking for guests, and replaced daily by maid service along with the little bars of soap and fresh towels.

Comments

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• A reply on Talk: Elliot Krane: The mystery of chronic pain

  May 7 2012: Who here said it was a socio-political construct? THAT is crazy!

• A reply on Talk: Elliot Krane: The mystery of chronic pain

  May 7 2012: Dear Susan,
  I, too, understand completely. Just don't give up. There is someone out there who can help you. Have you been diagnosed? If you have, get on line and find a support group, and every bit of information you can about ehatever it is that is causing your pain If there is no local suport group, find one on line and if there are newsletters ot other sources of info, subscribe to them if you ca, Knowledge is power. Even though getting a diagnosis did not lessen my physical pain, it instantly gave me the knowledge that I was not "crazy" and that it was not my fault. It was a starting point from which to work. That was a long time ago and it took years to get real relief, because my (genetic in all likelihood) disease was barely recognized as real. I don't know Ruth's book but intend to check it out (thanks, Ms. MacLean! Every little bit helps!) and you shoud probably also do so, along with the book, The Pain Chronicles, that I cannot recomment]d too stongly. It deals with how society has dealt with chronic pain from every angle from religious, societal, cultural, psychological and psyciatrically, medical, you name it, over the centuries, as well as the author's own experience.
  Most of all, know that you are not alone, nor crazy or is it your fault that you hurt. Be as good to yourself as you can, and only allow people into your life who understand or at least try. If I were the praying kind, I would pray for you. Let's just say I pray for you in my own fashion.

• A reply on Talk: Elliot Krane: The mystery of chronic pain

  May 7 2012: . It is very true that inactivity can be very harmful, but there are time that there is little choice. I have been on SSDI since 2001 when my pain made working physically imossible. In my case, after I found relief, I found myself active in ways I had never been, though I still suffer symptoms and continue treatments.. With the help of good treatment for my pain, arrived at after much trial and error, both traditional and non-traditional methods, I have come to a happy combination of things that work. Getting there rquired much time, patience and work on my part as well as my doctors and other caretakers. Not all cases are the same. Congrats and all my sincere happiness to those who find relief through a single or several method(s) such as self-hypnosis or meditation, or spiritual work. Just remeber, we are all individuals, on every level.

• A reply on Talk: Elliot Krane: The mystery of chronic pain

  May 7 2012: Try everything. Go to a doctor you trust and will not assume you are a hypochindriac. To those of you who have posted here and know what chronic pain really is, read :The Pain Chronicles", then take it to your doctor, therapist, psychologist, spiritual advisor, whomever, with notes. Make them promise to read it. Stop feeling guilty. It's not your fault that you hurt. Realize that charonic and acute pain are very different animals to be treated very differently and wih very different affects on the mind and body. Vanessa knows what I am talking about and she seems to have found the right place and doctor. Best of luck to her. Use the internet to find someone in Vancouver. I, too, am a little afraid of moving for fear I will not find the kind of care I have found here. Such doctors and clinicss and doctors (legitimate and knowledgable ones) are very hard to find. Mine did not even have a waiting list for me to get on. My GP helped me to get in to see the doctors at my local pain clinic, for which I am forever grateful. Just never give up and don't let anyone tell you it's all in your head, make you feel guilty, or make you believe that if their own particular idea of a palliative doesn't work, that it's your fault. Be open to possibilities, but if, after a reasonable amount of time, something is not working and your life is still one long round of pain and resulting depression (very underestimated) tell you caregiver honestly. Don't be afraid of hurting their feeings or insulting them. You need to try something else, perhaps inconjunction with their palliatives. With time, effort and any luck, you may well find the right combination of treatments and get your life back. I am still not without symptoms, but I function pretty well, compared to a few years ago. Just keep at it. And only talk about with those likely to be supportive, and not the "know-it-alls" who will warn you off treatments they peronally disapprove of, like drugs.

• A reply on Talk: Elliot Krane: The mystery of chronic pain

  May 7 2012: Brian, cervical dystonia patients were once routinely sent to Psycholgists and psychiatrists in the belief that there was nor "real" cause for pain. I have found self hypnosis and meditation to be helpful, but it doen's work if you are trying to work a job such as bookkeeping. I doubt many bosses would tolerate it if you used it much on the job. There is such a thing as intrctable pain that can only be treated by doctors and their "evil" drugs, much as I agree that the pharmaceuticals have a lot to answer for with their drugs that turn out to be nightmares themselves. My advice to people with severe chronic pain: find a genuine, well experienced pain clinis, which uses every approach possible, whatever works. They are rare and hard to fid. And a broken leg is not in the same class of pain I am taling about. I have suffered a number of broken this or that including two broken hips and a very severely btoken lege. You can look forward to those things healing, even if it takes months. True chronic pain does not end by healing.
• +1

  A reply on Talk: Elliot Krane: The mystery of chronic pain

  May 7 2012: Cynthia again. The first Botox shots did not work. Then +- 5 years ago I tried Botox again. It is now insured nearly painless and works, though meantime I went on SSDI. Medicare and supplemental insurance pays for ost of the cost and it is about 85-90% effective, though I still take drugs. Drinking is a rarity. I lost minimally two solid decades of my life forst, though. So, Erin and others, I would highly recommend to doubter a book called "the Pain Chronicles" which came out in 2010 by Melanie Thernstrom, a victim of another, even more obscure chronically and life changing severely painful disease, incurable as is mine, though neith of us will die from the original diseases themselves--only their painful effects if we do not find relief. Otherwise we might as well be dead. Do not preach how such things should be treated until you have been there. You have no idea of the ever constant reinforcincing of itself loop of pain that the nerves form, which overlap neatly with the same loops (I have learned) that cause chronic depression. The worse it gets, the worse it gets. My disease did not show much on the outside--I could have faked the neck teisting and head and sometimes hand tremors. This little lectureis to be paid attention to as an introduction to the book I mentioned. I wish it had been out in 1990!

• A reply on Talk: Elliot Krane: The mystery of chronic pain

  May 7 2012: I fought my chronic and, increasingly severe pain for probably a decade or better, believing it was a result of stress, tension, something I could somehow control on my own. I ate aspirin and other OTC pain killers, and drank to get to sleep, and ended up with a perforated ulcer, problably as a reult of trying to medicate myself. My pain and other symptoms matched nothing I had ever read about or seen before, and I am very well read, believe me, so I feared going to a doctor for the simple reason that I feared being called a hypochondriac. I had had not exoerience to that point with prescription drugs or was I using illegal drugs, but I was afraid to see a doctor for all the reason Erin P. cites: I would not be believed, all I wanted was sympathy and drugs, people would think I was psychologically off base, etc.. Then, when on the verge of medicating my consciousness out of existence, I FINALLy went to my very good family doctor. Call it karma, luck, whatever, but the night before she had read an article in a medical journal about something called cervical dystonia or spasmodic torticollis. She took one look at me and said" You have torticollis!' I said "HUH?". Imagine a very stiff neff with your gead resting on your shoulder involuntarily with all the excruciating pain that goes with it, totally unable to straighten your head. I was trying to work as a bookkeeper at the time and imagine that! She sent me to a neurologist for confirmation and I went through years of experimentation with various combinations of drugs, painkillers, muscle relaxants, as well as everything from acupuncture to various physical and massage thereapies. I learned self hypnosais, meditation, etc, but not to any goo, long term results. The came Botox. I receive multiple Botox shots in my neck once every three months. 10+ years ago, I tried it as it was just beyond the experimental stage. The shots themselves were painful enough that I nearly passed out, were extreemely expensive, uninsured,u

• A comment on Conversation: The place to start a real conversation is with oneself. This is the voice the voice that has been squelched, most often from birth onward.

  Apr 5 2012: Thanks, Barb. Have you ever been accused of "being too much iside your head" or "living in an ivory tower", being the princess and the pea" in the fairy tale, or overly analytical in you endeavours to be alone with yourself, without being lonely? I have. It's a hard concept to get across to some people. It can look like coldness and aloofness sometimes to others. It takes a lot of effort to convince people you are not trying to slight them--not in the least. It isn't about them.

• A comment on Conversation: The place to start a real conversation is with oneself. This is the voice the voice that has been squelched, most often from birth onward.

  Apr 4 2012: Precisely, Yale. My childhood and teenage introversion has turned into a craving to connect with people in the flesh and find out what makes them tick, but now only that I know what makes me tick.

• A comment on Conversation: The place to start a real conversation is with oneself. This is the voice the voice that has been squelched, most often from birth onward.

  Apr 4 2012: Dear Barb,You have made a point I have been trying to get across to certain people for whom I care a great deal for a long time: rule one is to know and be comfortable with oneself and DO NOT allow anyone or anything distract you from that first. basic requirement in being human, and even before hoping to be able to connect authentically with others. Technology is not the only thing that distracts us from that end, however. Too often it is fear of what we might find if we find ourselves. Then technology, among other things, can be a distraction from the sometimes uncomfortable truth we find inside. And. yes, we fear being alone because we equate it with loneliness. Nothing could be further from the truth. I am breaking my own rule here, or I guess more accurately, making an exception to my rule of becoming involved in an on-line conversation, but this is a subject close to my heart. I was enamored of it for the first few years I had a computer, but have since withdrawn memberships or simply ignored them on quite a number of discussion networks . I recently received a compliment from someone I knew on a comment of mine that went to Facebook, as almost everything seems to do these days. It was a very rare thing for me to do. I sign petitions, perhaps with a short comment, post it to my wall, and forget about it. Engaging in discussions whether they be political, religious, or the color of the sky, or in this discussion is something I just don't do except with real, flesh and blood friends and one or two left the early daywas astounded to finded I hade literally dozens of "friend" requests from people I do not know or have any connection with except through a real friend, someone I knew in flesh and blood, three or five or seven times removed. People have been running away from themselves forever with a variety of distractions, whether it be sex, drugs. rock 'n roll, movies, fantasies whatever. Technology is just the most recent-and extremely convenient way of doing so