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  • COPD-Support - Experience from our Members

    Thoughts, life stories and experiences

    As presented throughout this web site, we offer disclaimers which indicate that our organization is not qualified to give medical advice. Medical professionals spend too many years of their lives in training and supervised practice for anyone of us to presume that we have all the answers. On the other hand, we do like to think that we offer a unique perspective and can certainly talk about what seems to have worked or not worked for us.

    This feature is dedicated to providing that perspective. In most cases it is not earth shattering but it is down to earth. Here you will find some things that are easy to understand. There are no magic bullets here but there are some sound statements that anyone with COPD can relate to.

    Feel free to copy anything in this feature for your use or for use of others with COPD. We only ask that they not be published elsewhere without permission of the author.


    click here to add your experience
    (*If you attach a photo we'll make a small one to go with it)

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  • Dick Brown - That Word, Exacerbation

  • EXACERBATION
    I hate that word. I know it's what happened to me this week but there just ought to be a better way to describe it. Exacerbation! It's five syllables long, it's hard to say, and it sounds like something you'd be embarrassed to admit to your mother.

    Just picture this scenario:

    Mom: "What are you doing?"

    Reply: "Oh, uh, I didn't see you come in. I was uh, just, you know, exacerbating."

    I've been a heavy and compulsive reader since I was a child. With all of my reading, I don't remember encountering this word until very recent years. Now it seems to be the only word some highly educated people can think of to say that something has gotten worse than it was.
    "The political situation has exacerbated..."
    "Overnight, the battle exacerbated and..."

    The first syllable of this word starts with a back of the throat k sound, (always a strong and threatening sound - think KKK) with a quick transition to a front of the mouth hissss. There's kind of a reptilian association there and our culture generally doesn't deal too well with snakes and such. We're off to a bad start already and now we're going to follow that up with another immediate hisss and now we have "ekss asss." Now at this point, we seem to lose some of our assurance and add a pause type of sound - er and that brings us up to "ekss asss er." We can't admit to our indecision because of the strong beginning so now it's time to throw in an explosive b sound - BAY, and that bring us all the way to "ekss asss er BAY." That hardly seems like a proper ending so let's add something soft and melodic like "shunnn" to minimize preceding harshness. Outside of m, the n sound is about the only non-vowel sound in our language that can be drawn out like humming. Now we finally have the whole word that says we're not breathing as well as we did last week - "ekss asss er BAY shunnn. Sounds almost evangelical with that nnnn sound on the end, doesn't it?

    I've always been opposed to the idea of a word being considered bad. That whole concept has a pagan association that implies words have some sort of magic power. That leads into "secret names" whereby other people can impact on your life simply by speaking your secret name. Some words become so powerful that just saying them will assure success or failure of a project. In this particular instance, I'm willing to make an exception. Exacerbation is a BAD WORD!

    When I was taking photographs of children, the first thing I did was have my assistant get the mother distracted so she wouldn't be "helping" me get a smile on her child's face. You know, "Smile for the man. No, not like that, your real smile." I would then ask the child (this worked well with children aged 2 - 5) if they would say a real hard word for me. This would usually generate a puzzled expression. The word I always asked them to say was hippopotamus. It is a hard word for a small child but it's also one they've heard. I got variations all the way from hoppopittamus to something very close to hippopotomus and always got a big smile of pride because no matter how they said it, they were convinced they had been successful. Now, just try to imagine the expression I would have gotten from a three year old if I asked him/her to say exacerbation.

    Come on, people. This disease we live with is difficult enough without using an ugly word to describe what's happened to us. Surely there is a softer, perhaps gentler word out there to describe the bad episodes we sometimes experience. If we can't use this word with a three year old, maybe we shouldn't be using it at all.

    Dick in Missouri
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  • Glen Callaway - Reminder from a Hornworm

  • Hello All,

    Earlier today I headed out to the tomato patch to pick another batch of tomatoes. It has been raining heavily every day the past week so I took a plastic mat to sit on, got my bucket, and settled in to pick tomatoes and enjoy nature around me. For me, being outside with nature is one of my best medicines and something I delight in.

    So there I was, delighting away, until I ran into that bane of tomatoes, the Tomato Hornworm. Giant fellow about two inches long and as big around as your thumb with a nasty looking (but harmless) horn like protuberances on the end. Harmless to people, but one of those rascals can strip a tomato plant to its stems overnight. A regular eating machine. I promptly snatched him (maybe her) off the vine and disposed of him. I sat there catching my breath after the violent struggle, wondering if there were any more. The rascals, big as they are, can blend in and be very difficult to see.

    As I was sitting there, peeling back branches looking for more, for some strange reason a couple of the threads of our group discussions in the past couple of weeks came to mind. You recall those interesting letters we had regarding whether smoking was an addiction or a habit and the one about whether we had this disease or lived with this disease. Things got rather interesting there for a while and to tell you the truth, I'd been thinking about that off and one since. The Hornworm kind of reminded me of it again. You see, I wasn't really interested in whether the worm was in the habit of eating my tomatoes or was addicted to them. It just didn't matter to me, it had to be dealt with as best I could, regardless. Similarly, it really didn't matter whether the tomatoes had the hornworms or lived with the hornworms, they still had to be dealt with. Oh, it would be nice to know, I suppose, how the worms came to be in my garden. Did they hatch there? Walk there? Surely they didn't fly there. If they could talk I could have asked how long they had been there, why they chose my crop instead of the neighbor's crop, and what their intentions were. I could have left, gone to the computer and researched them, talked to the neighbors, the county agent, written letters and waited for replies. I could have gotten so bogged down in learning about them that I failed to do what I needed to do, which was to deal with them in the most efficient way possible.

    That's what reminded me our disease and the way we sometimes come to deal (or not deal) with it. I think sometimes we get so involved with small details that we forget that each of us must deal with our disease (or the hornworms) in the way that is best for us personally. Maybe I have too simplistic a view of some things. I know I smoked for thirty five years. I am really not too concerned with whether I had a habit of smoking or was addicted to it. (Actually I've always thought I enjoyed it immensely.) I've been "end stage" for nine years now and am seven years past due to have passed on; according to some doctors. I am not unduly concerned with whether I have this disease, it has me, or I live with it. I just want to make sure I do every possible thing I can to make sure I DO continue to live a quality life. I intend to make my life as comfortable and as pleasant as possible both for myself and for those around me. Knowledge of our situation is a wonderful thing. My knowledge of things enabled me to know the hornworm had to be removed from my garden, just as cigarettes had to be removed from my life.

    My knowledge tells me that this disease is progressive and I must constantly be adapting to insure a good quality of life. It tells me to avoid certain things, exercise, eat well, take my meds when and in the proper dosages I should, and to stay informed. Your knowledge has told you these same things. These things are common to all of us. I have also learned that staying strong in my faith and helping others are two powerful medicines for me. But I can apply only that to myself which brings me to my point. There are any number of ways to manage this disease, endless articles written about it, books to be read, lectures and classes one can attend and, in this group alone, probably hundreds of ideas. The trick is to sort through it all, find what works for YOU, and make use of it. Don't get so busy learning that you forget to get out of that chair and exercise. Don't get so involved with the philosophies, histories, whys and wherefores, that you miss the "do's and the don'ts".

    Learn all that you can and then APPLY it in the way you find best for YOU. When you do this, THEN you will be truly helping yourself and I hope you will then share the information with the rest of us. I know I always need to learn more of what to do but sometimes I need to be reminded to do it - even if I'm reminded by a lowly Hornworm.

    Glenn Callaway

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  • Cheryl Hagen - a poem




  • An Ode to the Roses and Candles

    Coughing, wheezing,
    Pursed Lip Breathing

    Air cold, too old,
    Pursed Lip Breathing

    Stomach full, chocolate pull,
    Pursed Lip Breathing

    Tight chest, can't rest,
    Pursed Lip Breathing

    Heart pounds, scary sounds,
    Pursed Lip Breathing

    Panic comes, brain numbs,
    Pursed Lip Breathing

    Short of breath, this death?
    Pursed Lip Breathing

    Hip hooray, saved my day!
    Pursed Lip Breathing


    Cheryl in Washington State


  • Tony Hamel - Ron Peterson Straw Mask

  • There is something that is very simple. You make it yourself and the results are quite amazing. My transplant doc was amazed that I could hold 92 up to 94% saturation while walking on a treadmill at a mile an hour for up to 30 minutes and beyond. I rarely got SOB my doc approved it whole heartedly. It's called the Ron Peterson Straw Mask.
    You can go here to see how to make it.

    It is simple. A cone mask and a soda straw. You poke a small hole to stick the straw through right where it will comfortably fit in your mouth. You keep your O2 cannula on and you will be surprised as I was. The mask acts like a reservoir, collecting the oxygen that would otherwise dissipate when you breathe out. I was able to turn down my oxygen to 3 lpm instead of my normal 4 to 5 lpm for the treadmill. One draw back is if your a C02 retainer you need to watch it more carefully and not get your saturation over 92 to 94%.

    Tony Hamel

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  • Steve Knight - 12 Steps toward a Medical "Miracle"

  • If you or someone you love is diagnosed with a life-threatening illness, here are the positive steps you can take to insure the best outcome possible. They don't add up to a guarantee, of course. There are no guarantees in medicine. But that's actually good news for people with a serious illness: Maybe you can't be absolutely certain that the best will happen, but you also can't be certain -- no matter what your doctor says -- that the worst will happen.

    1. Take Control of Your Illness. You may think you're helpless, but you're not. Take control of your life back with a combination of information and attitude. Be a part of every decision about your treatment. Resist the urge to leave it all in your doctor's hands.

    2. Insist on Options. Forget about second opinions. Look instead for second options. There are no absolutes in medicine, no inevitabilities. There are multiple solutions to every problem. You just have to find them. Don't be afraid of choices; embrace them.

    3. Find the Right Doctor. Not all doctors are created equal. When you're seriously ill, it's worth the extra effort to find the best one for your condition. It can make the difference, literally, between life and death.

    4. Build A Partnership With Your Doctor. A true partnership means there are special responsibilities on both sides. Your part is to be informed about your illness so you can ask questions -- you can never ask too many questions. Your doctor's part is to answer them all, fully and patiently.

    5. Recognize That All Medical Decisions Are Trade-offs. Again, there are no right answers. Every decision regarding medical treatments involves weighing costs against benefits. To strike the right balance for you (everybody's balance is different) get all the information you can, then look carefully inside yourself and decide what really matters.

    6. Sustain A Claim to Life. A good attitude -- call it optimism or "fighting spirit" or whatever isn't enough, no matter how positive. You have to do something. A will to live has to be accompanied by a commitment to living: join a support group, make plans, set goals; "renew your membership in life."

    7. Find An Advocate (Or Be Your Own). In a managed care environment, getting the best care can be a struggle. You can end up fighting your doctor as well as your illness. If you haven't got enough fight to go around, enlist an advocate to do the fighting for you.

    8. Subdue The Enemy Within. Sooner or later, you'll hear a voice question: "Why Me?" Learn to recognize self-pity and resist it. Questions whatever bothers you; don't let this one. Not now. Another feeling to resist: guilt. Yes, loved ones are going through hell, but it's not your fault.

    9. Build A Support Network. You absolutely cannot get through this alone. You have to depend on people. Family, friends, caregivers, support groups, strangers, it doesn't matter, as long as it's somebody. But don't expect more of people than is reasonable. Don't expect family or friends to change just because you're sick. Don't expect yourself to change.

    10. Don't Let The Disease -- Or The Treatment -- Change Who You Are. Don't let the "I'm Still Here!" syndrome get the better of you. Denial and surrender are bad, but survival at any cost is also dangerous, just in a different way. If the disease, or the treatment, changes who you are, then you've lost the battle anyway.

    11. Know When To Draw The Line. There's a line beyond which the price of survival is just too high, a line between what is worth fighting for, and what is not. Thresholds of pain vary, as well as thresholds of fear and uncertainty. Doctors often draw this line for patients; draw it for yourself.

    12. Never Say Never. Everybody reacts to disease differently. Every body reacts to drugs and treatment differently. Every doctor has had patients who defied all the medical textbooks and prognoses. They've all seen "hopeless" cases turn around. For all the advancements in medical knowledge, the human body remains wondrous strange-- and full of surprises.

    I ran across this again recently, and realized it cannot be read too often. I don't know the author, but they must be a vital personality with an attitude to emulate. Life is good, enjoy.

    Stevo


  • Carolyn Krall

  • I started smoking in my mid to late 20's and before I knew it I went from occasional to 3 packs a day. I knew this was not a good thing but continued anyway. I started trying to stop smoking in my 40's and I continued to try. I finally succeeded in June of 2000, I wasn't going to start a new century with a bad addiction.

    I worked in the auto industry on the assembly line working 10-12 hour days 6-7 days a week. I was getting a bit short of breathe but blamed it on weight and age. During Christmas break of 01, my hubby and I went to New Orleans. Well I came down with what I thought was my semi annual bronchitis and didn't want to hassle with HMO and out of state Drs. We ended up going home early and I didn't actually make it home for 3 weeks. I went straight to ER since I noticed I was turning blue. When I finally came home I was on 6lpm of O2, 60mg of Prednesone and what seemed like a ton of inhalers. I was devastated, my life was over and at the tender age of 51, I wasn't sure life was worth living.

    After several months I found the Copd chatroom and I finally found someone who could relate to what I was going through! I found answers that the Drs didn't have because they haven't lived our lives. This group saved my life in more ways then 1 !

    One day I was asked if I would consider hosting in our Chatroom, I was hesitant but went ahead with it anyway. Next thing I know I am being asked to Coordinate in the chatroom. Well since then I haven't been able to sit on my fingers!

    This group has given me so much including life despite Copd that the only thing I can do is pay it forward!

    Because of what I learned here, I no longer need daytime O2. My lung function has improved tremendously, because of what I have learned. The Drs tell me I still have COPD but it is primarily Asthma and Bronchitis. I have both under control for now, and hope to keep it that way.

    Caro


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  • Nancy Majava - And then there was Exercise!

  • There aren't too many people who don't greet that word with a groan. But, as all us COPDrs know - and if we don't, we haven't been listening or reading - exercise is, after smoking cessation, the single most beneficial addition to obtaining and maintaining an improved quality of life.

    Exercise will not bring back any lost lung function, but it will certainly help you to use whatever you have to the best advantage. When you exercise you teach your body and your muscles to function at their optimum with the amount of oxygen you are able to supply.

    Exercise will strengthen your heart and your other organs and you will have increased breathing capacity and stamina. Many people have reported being very ill and being told by their Doctors that if they had not been in such good shape they probably would not have made it.

    Exercise will even help mental awareness because you are moving the blood and oxygen which flows to the brain also. For half an hour to an hour a day you receive untold benefits that last a lifetime. It's a worthwhile payoff.

    The hardest thing about exercise is to start - after that everything is downhill!

    Nancy of Florida


  • John Margeotes - Cartoons

  • John was an artist and cartoonist. The cartoon on the left was the last John was able to finish.

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  • Bob Moran - Post Bob sent to a Newbie about smoking

  • "Hi, I went ahead and posted this to the whole site because you said you wanted to but didn't because of concern for my privacy. The letter I sent you is basically a letter I sent to the whole group once for we can get to know each other, with a few things added LOL I try to send to new folks when time permit's for they will know someone and feel more relaxed here a little.

    As far as being ashamed of have been a smoker or even if you still smoke, don't be ashamed. Remember we are from a era where smoking was the norm, more folks smoked then did not. All the movie stars we grew up with John Wayne, Dean Martin and many more smoked, so it was glamorized. Heck even at one point it was almost like a rite of passage into adulthood in this country. But do to educating our youth and they seeing folks like us, each generations has slowly flipped that around for now being a non-smoker is the norm.If you are still smoking we here know how hard it is to quit that's why we have the smoke no more group support Quitting is not easy I was put on o2 in 2005 but still smoked until 2009. You should remember COPD is the 3 largest killer in this nation only surpassed by cancer and heart problems . I don't think of any shame I having heart problem or cancer and they both have smoking as one of the causes with them also.. The stigma of being ashamed or we did it to ourselves mainly comes from us the COPD community not from others. Think about it the biggest cause of lung cancer is smoking, but do you see a cancer patient ashamed of their illness . You have to try to get over the shame you put on yourself, because it helps depression move in and that works directly against you when dealing with this. Ok Im getting to long winded here lol Ill let some others talk too. Welcome to the group"

    Bob-IL
    Problem with COPD is it can make you feel that you are not needed.
    Volunteering helps you feel needed again.

    Remember i aren't no Doctor or..... Grammar teacher..... just a guy getting by

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  • Jan Reynolds

  • We've all done some dumb things in our lives, my dumbest was to begin smoking at age 27. That was in 1972. I grew up with two parents/grandparents that smoked all the time. Lots of second hand smoke. At age 52 I collapsed at work and was rushed to the hospital. While there for 2 weeks, I was diagnosed with severe COPD/Emphysema, Chronic Bronchitis, Severe Asthma, Diabetes and a host of other ailments. Talk about shock hitting you in the face. I'd never even heard of COPD before. Once I got home in 99 I started researching COPD on my computer. I found this Group and have been a member ever since. My last few FEV1 readings have been 22%. I'm a O2 retainer so I'm not on oxygen unless I'm having major problems.

    Almost right away I signed up for the Watch Program which at that time was only one group, A. The Program has since grown quite a bit. When Bill asked for volunteers, I signed up for a Chat Host. It was a new program at the time. A bit later I asked to help out where I could...that is when I took over the Watch Program. Another year or two later, Debbie Thompson asked me to assist her with the Cadre. I accepted then she got too sick and I handled it for a couple years alone. I then asked Mike Howerton to assist me and he accepted.

    What a blessing this Group was and still is. I truly believe I wouldn't be here if it wasn't for this Group. I've learned so very much and still am to this day. My goal is to give back to others that which I have received. I've never been one to sit on my hands and let time pass...I get involved. I cannot sit and do nothing, I never could - I think it's from growing up on a farm. There is always work to do and I thrive on it. I do have my bad times, but I adjust and go on. That's what life is for most of us, making adjustments and going on. Every day is great because I woke up. I have such wonderful friends from here that if it took me getting this disease to get to this point, then great. I wouldn't change my life now, it's great and I have the most wonderful extended family. I hope to extend it even more.

    Jan
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  • Ruby Sandler - Thought of the Day

  • Almost as predictable as the sunrise, Ruby sent the List a 'Thought of the Day' for years. Uplifting us not only with inspirational quotations from other people but with her own consistancy in bringing them to us.

    Here is one more quote to honor Ruby, and to comfort whenever another Angel joins our list.

    "Though we encounter it as suffering, grief is in fact an affirmation. The indifferent do not grieve, the uncommitted do not grieve, the loveless do not grieve. We mourn only the loss of what we have loved and what we have valued, and in this way mourning darkly refreshes our knowledge of the causes of our loves and the reasons for our values. Our sorrow restores us to the splendors of our connectedness to people and to principles. It is the yes of a broken heart. In our bereavement we discover how much was ruptured by death, and also how much was not ruptured." ~ Leon Wieseltier



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  • Jo-Von Tucker - An open letter to family members from your COPD person

  • Jo-Von Tucker is a co-author of Courage and Information.

    She wrote this to her family, and has been shared in our community for many years.
    For those of you that have family members that need help understanding.
    Here is the two page letter so you can print it and share it with your family.

    Family Letter

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  • John Windhorst - Coping with Crises

  • Each person copes with crises differently. It is an "any way you can" situation and the coping method is unique for each individual.

    Bob Veninga identified 5 stages in working through a crisis. People go through all stages but not without looping around among stages - each person and crisis is different.

    1. The Crisis
      No concentration
      Not analytical
      Poor conversations
      Don't want advice
      Want presence of another person
      (1-3 days)

    2. Deliberate Activity
      Want to re-establish life
      Quick return to work
      Begin to think about future
      (1-3 months)

    3. Hitting Rock Bottom
      Sudden anger
      Overwhelming loneliness
      "Life kind of ended"
      "My spouse not understand me"
      Guilt
      (3-12 months)

    4. The Awakening
      "A Fortunate Coincidence" such as:
         New friendship
         Breakthrough at work
         New idea
         Religious discovery
         Financial gain
      Healed when "not controlled by the crisis" - a new agenda
      (9-15 months)

    5. Acceptance
      Movin' on
      Something good for me in the crisis
      (2 years total)

    Again, everyone copes differently and takes different amounts of time.
    But for major losses like the death of a child (most traumatic) and death of a spouse, it takes about 2 years to really work through the crisis.

    Knowing these stages does not solve a crisis but does lend confidence that the person is not nuts as these various stages and reactions are experienced.

    Bob Veninga also offered a number of strategies while working through a crisis.
    1. You have not lost everything.
      Sounds trite but listing what you lost in one column and what's left in another column can be helpful: if not right away it may be a good thing to refer to later.
    2. Be gentle with yourself.
      Consider: we are much more harsh with ourselves than we would be with a friend experiencing a similar crisis. Being harsh is not helpful.
    3. Rely on friends
      A key to unburdening yourself - We all are lonely - A friend represents unconditional love: "I believe in you" - Friends may well be God's emissaries
    4. Don't make problems bigger than they are.
      We are all experts at making mountains out of molehills. Ask: "Is it life threatening?" We all can change our perception of a problem.
    5. Rely on faith
      Crises are hard on faith. Conservatives are hit the hardest. "Forsaken by God" is a normal feeling. Go through this testing and come out stronger.


    Are subsequent crises easier?   Not really. The new crisis may be just as painful but if you remind yourself that you lived through one crisis, that knowledge lends confidence that you can live through the new one too.

    John Windhorst, Minneapolis
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