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How I Feel Today 01.10.14…. living with COPD

11 Jan

Last week I started this post “Gosh so much has changed and so little is different.”  I went on to say, “That statement has zero impact or significance to this entire post.”  Well this week that statement is in fact the sum total of this post.  There have been absolutely no significant or insignificant changes in my health in the past week.  I will rate the week 3, a nice consistent 3.  No ups or no downs.  No left or rights.  Just plugging along. 

Stats:              O2 = 80

                        Heart rate = 121

 5 minutes later those numbers are:

                        O2 = 96

                        Heart rate = 104 

Before I gave those 2 stats in I had just completed moving the wash from the washing machine to the dryer, and emptying the dishwasher, then walking the 40 feet to my office.  Mind you I was using my using oxygen supplement at 2.5 lpm during this activity.  This is my world.  And please! please! please! no pity parties.  I shared this to make a point, that being, even the slightest activity can and does have a very real and immediate impact on anyone with COPD or Emphysema, or any other respiratory distress.

Over the past year I have used many terms that are day-to-day words and phrases to me.  I throw them out like everyone would know exactly what the hell I am saying and would need no further explanation.  Well, surprise surprise, I have been called out more than once so for doing this.

 

Because I have been so fortunate recently health wise, I am going to start using this space in my weekly “How I Feel Today” post to define a word or phrase.  I thought I using my soapbox (this Post) was very appropriate, because it is about how I deal with COPD. What I do to combat it, and how it impacts my daily life.  I hopefully can help those who are fortunate enough not to have COPD or any other respiratory disease/distress to understand the ramifications of the disease.  I also hope this helps those who have recently been diagnosed, as well as, help anyone else who might have a need.  

 

So for the time being when I do this weekly report I am going to include a segment on a particular word or phrase I use or have used.  I will also take suggestions from my readers for the word or phrase of the week.

 

This week’s word will be EXACERBATION:

In simple terms (as defined by About.com) an exacerbation is defined as a worsening of COPD Symptoms . The Global Initiative for Obstructive Lung Disease (GOLD) defines it as “an event in the natural course of the disease characterized by a change in the patients baseline dyspnea, cough, and/or sputum, that is beyond normal day-to-day variations, is acute in onset and may warrant a change in medication in a patient with underlying COPD”.  (taken from about.com).

 

An easier definition to understand is: In the simplest terms, having a COPD exacerbation means you are experiencing a sudden, worsening, or flare-up, of your normal baseline COPD symptoms.

 

The WebMD link below takes you to a comprehensive list of 10 signs of a COPD exacerbation. 

 

http://www.webmd.com/lung/10-signs-copd-exacerbation

 

That folks end the technical aspect of my presentation. LOL. Now I will talk about how I visualize an exacerbation and what it does to me, I will try and describe what signs I look for, how I respond, and what is the long haul result of an exacerbation.  Folks I am talking about me, not you, it is important you realize this.  Each one of us who suffers from COPD or any other respiratory disease or distress, will respond to an exacerbation in your own way, you will come to learn your signs, you will learn how you need to respond, and you will know the long term impact of an exacerbation to and on you.

 

When I was told I had COPD and that there wasn’t a cure, and that I had limited time (3 to 5 years), to say I was shocked would be a gross understatement.  I began doing all the classic things, I pouted, I moped, and I went and saw a preacher to ask if they would do the eulogy.  I checked to see how much insurance I had, and got my financial things together. I was racing around getting my ducks in a row, because I had “limited” time.  This took about 4 months. Then I had a realization. I wasn’t going to die of COPD tomorrow, or the next day, or even the following week.  As a matter of fact, according to the doctor I had 3 to 5 years, that was the day I decided to live. 

 

I am a verbal and visual kinda guy.  In order to come to terms with my disease, I had to see it, touch it, and of course feel it.  I began to visualize a ladder with a ton of rungs, maybe 50 or a 100, it could be 500 even 1,000. But there was a finite number. I realized with each step down I was descending towards my death. But I decided I was going to fight it each step of the way.  I did little things like exercising more, and eating less, I paid attention to what was going on around me, and I enjoyed it more. Yet in my mind I kept seeing my ladder, and I still see it every day.

 

Each day I step downward toward the next rung of the ladder.  Most days I hardy make any progress at all towards the next rung.  Some days I feel like I have taken two or 3 steps.  But without a doubt, whenever I am hospitalized, or have had an exacerbation of my COPD, that is a significant step down the ladder.  For visualization purposes I think I make downward steps the 1st couple of days of hospitalization.  After those first couple days, the medicine regiment starts to kick in, and immediately slows the process.  By the time I am released from the hospital, my steps down the ladder have slowed significantly and I think and feel like I am only making tiny partial steps again.  When I have an exacerbation, my progress is not repeat is not as rapid as a hospitalization, but it is a rapidding (made up word) of the process.  Being able to recognize the signs of an exacerbation are critical, it gives me an early warning, it allows me time to consult my doctors and start a course of action to get it under control before additional significant damage can be done. This is where that list of ten steps offered by WebMD really comes into play.

 

One of my earliest warning signs (before the list kicks in) that something ill is in the wind is when I can’t read.  I love to reading; I am reading something pretty much all the time.  I have my nook with me all the time, I use my smart phone.  When I find myself starting to play mindless games on the nook or phone, I know I have an issue brewing.  If I am stupid enough to ignore that sign, the next major sign for me is an inability to stay focused.  Those are the earliest signs.  After that is the normal signs, coughing more, yellow crap coming from my lungs, even being more short of breath than normal, and being bone tried all the time. These are my signs, but by the time I am coughing up crap, if I haven’t paid attention, it’s a sure bet I will end up in the hospital.  The key here is to understand your body, understand your signs, and act on them at the earliest possible time.  Please understand, it wasn’t like the day after I was diagnosed with COPD I had this all figured out.  It has been a long long process.  A process that constantly changes as I become more aware, and as my doctors become more attuned to me and my needs.  Having a doctor or doctors that you trust, who you feel have your best interest at heart, is paramount in getting through this as comfortable as possible.  I am always looking for the evolution of the disease in my body.  I am becoming a better self-advocate, and list maker of “changes” that I notice, so I can keep my doctor informed.  I ask questions, and involve myself in groups that share this disease and I am constantly learning.  My suggestion is that you do this as well.  All of this helps me better understand, and gives me an early warning.  

 

After I was first diagnosed with COPD, I didn’t have a clue what the process was going to be, I didn’t know what to look out for, I didn’t know the signs of a pending bout of pneumonia or an exacerbation.  I am still not an expert, but I am much better informed and more aware. I now have my signs.  So what do I do when I notice a sign?  That has become quite easy. I immediately call my doctors, and see them.  Then I follow their orders almost to the letter.  The one piece of doctor instruction I have the most difficult time with is the “take it easy” component, but am getting better.  If the medical process requires 5 IV infusions of drugs a day for 2 weeks, I am right there, you can pretty much set your clock by me.  If it’s a combination of oral and IV, again right on schedule, for the entire duration of the drug treatment.  I don’t stop when I am feeling better (and nor should you), I take every last friggin pill or IV treatment. I have the blood work done, and the x-rays,  LOL, I have had so many chest x-rays over the last 5 years I am surprised I have any hair on my chest at all, and that I don’t glow a lovely shade of green. 

 

What is the long term impact of an exacerbation or hospitalization you ask?  The harsh but simple truth is that each hospitalization and or exacerbation is a rung down the ladder.   You don’t get to climb back up.  But you can lessen some of the steps, and you can extend the length of distance between rungs. You’re not going to get better.  But you will make yourself more comfortable, you can increase your chances of extending you’re life.  You have to take care of yourself, you have to be true to yourself, and most of all you can’t LIE to yourself. When your sick, DO SOMETHING ABOUT IT, It won’t go away on it’s own, You’re not fighting a cold or the flu, and that is how I combat my COPD. I also volunteer, every time there is a medical opportunity to participate in a group study I have my arm up, yes I am willing to be a ginny pig, if it will help me, or if it will help someone else down the road.  I talk about my disease all the time, I gain insight from all who I talk to, and find little things that helped them, that might help me.  I am open to suggestions. And the most important thing I do is REFUSE to give up.

 

I imagine some of you are saying how the hell did he write 1500 words on exacerbation?  Well I repeated myself a little, but mostly I had a lot to say.  Thank you for sticking with me.  I am going to continue to do this if I have no serious issues to present.  As I stated earlier I will choose a new word or phrase next week, and I will entertain suggestions for words or topics from the readers.

 

Again, thank you for sticking with me, and as always if you have a question, thought or concern, please feel free to ask.  Take care, Bill

 

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27 responses to “How I Feel Today 01.10.14…. living with COPD

  1. The Persecution of Mildred Dunlap

    January 11, 2014 at 1:02 pm

    Great post. Glad you’re holding steady. Exacerbation is a great word to write about in the context of COPD or any illness. And, in describing the signs that lead to one, it helps us see how to move through it if it happens and return back to a better state = hope. Happy weekend, Bill. 🙂

     
    • FlaHam

      January 11, 2014 at 2:17 pm

      Paulette, I am in fact holding steady, and that is a victory. Clearly I didn’t write this post to help you understand. Your a nurse, and probably know the word better than I do. But so many folks that read my posts don’t understand the word or context. I thought I would use this space wisely and talk about those things. Letting them have the definition as defined by so called experts, and then putting in my words. We will see how this works. I hope you have a wonderful weekend. Take care, Bill

       
  2. Alice Keys

    January 11, 2014 at 1:44 pm

    Bill,
    The part I liked best about this essay was the image of having a ladder with a finite number of steps. The truth is, we all have a finite number of steps before us. I’m glad to hear you decided to keep living as long as there are more rungs in front of you. I’m also glad you have more rungs in front of you. 🙂
    Good weekend.
    Alice

     
    • FlaHam

      January 11, 2014 at 2:26 pm

      Alice, Please don’t think me rude, but you need to understand my allegory has me going down the ladder to death. Soft smile, not climbing towards it. Yes we all have a finite number of steps, but I think when someone is told they have a terminal disease, that finite number becomes much more real, and you pay attention to it more carefully. Because my number is more closely defined, I am bound and determined to live each step to the fullest extent possible. And laughing out loud my dear, I sure as hell won’t give up on something I hold so dear. And I hope that thru my words that someone who may just be waiting, decides to fight like hell. Thank you so much for your comments and your continued support. I hope that me correcting you has not offended you. Take care, Bill

       
      • Alice Keys

        January 11, 2014 at 3:34 pm

        Sorry Bill, to have misunderstood. No offense taken on your correction To me, death is up. I hope you live every step with joy, whichever that ladder points.:-) Alice

         
        • FlaHam

          January 11, 2014 at 3:52 pm

          Alice, Maybe there’s a joke in there someplace, but I immediately got it when you said death was up for you, and I do hope I go up as well when I die. And maybe this is another learning point for me, I have always felt that the pending conclusion as traveling down a path, or ladder as I have defined. Maybe it is in fact climbing up to my final destination. It is something I will consider, or at least not close my mind to. No matter the direction I travel, I will live as full a life as I can. Take care, Bill

           
          • Alice Keys

            January 11, 2014 at 4:05 pm

            Bill, I didn’t mean it as a joke. I take your writing quite to heart. Upward was just the way I felt it when I read your lovely piece tonight. The upward direction probably stems from spiritual music like “We are climbing higher higher” (Jacob’s Ladder) and the sweet chariot swinging low to carry me home. And, yes. I get the sense of you living every moment full of life. You’re an inspiration. 🙂 Alice

             
            • FlaHam

              January 11, 2014 at 4:19 pm

              Alice,

              Sometimes I am more flipant than should be. I realized you weren’t joking I was just being an ass. I truly appreciate your lovely comments and thoughts. I learn so much during these exchanges.

              Please take care, Bill

              Sent from my NOOK

               
  3. huntmode

    January 11, 2014 at 4:57 pm

    Bill, I am no slouch when it comes to research, definitions, etc. on anything, and as I have COPD, it always catches my attention. Your writings bring it home. You are deft in explaining the difference between clinical and reality – how this disease affects you, an individual, and on a daily basis. I always learn from you.

    The time difference between hearing a diagnosis and it sinking in – four months for you – and then determining what you will do is so very real. You are right (underlined in bold). The difference between knowing we are all going to die and being told – this is how you will die, this is your time frame is wholly different.

    You are giving us such a gift with your observations, your notes, your openness to meet us wherever we are at in the process – from someone who just wants to know for a friend or family member to those of us who’ve got it. I thank God for you every day, my friend.

     
    • FlaHam

      January 11, 2014 at 9:42 pm

      Hunt, Someday you will be standing on my soapbox, sharing the wealth of information you have attained, and you too (as you do today) will guide and help those with COPD, their families, friends, or just someone who has a thirst for information. You will be real, and you will carry the banner just as well. And you will say it your way, just as I say it mine. Someday, COPD will be chased just like cancer and heart disease are chased today. Someday folks will seek a cure for COPD with as much vigor as they do for cancer and heart disease, but today wasn’t the day, and most likely nor will tomorrow be the day. But it is coming. And our and so many other voices may have something to do with it. Take care, Bill

       
      • huntmode

        January 12, 2014 at 12:18 am

        Something that should be addressed, Bill (hint for your soapbox) – is the cost of Advair and Spiriva. I take both and without insurance that comes to about $450 per month just for those two, not counting the emergency inhalers at $40.00 each, the nebulizers Rx’s, which are relatively inexpensive. Someone in the Business Office of Group Health, thinking out loud, said she recalled each pharmaceutical company having a program for those who could not afford the medication. I hope I thank God every day for that woman. I qualified and have been able to continue on both.

        Spiriva’s Assistance: https://www.phahelps.com/pages/Programs/programdetails.aspx?p=107

        Advair’s Assistance: http://www.gskforyou.com/patient-assistance-programs/drugslist.html

         
        • benzeknees

          January 12, 2014 at 7:35 pm

          Huntie – unfortunately these programs only appear to be available to US residents. I tried to send GSK an enquiry about Canadian assistance, but they aren’t even setup to receive enquiries from Canadians. I plan to do more research. My husband isn’t working & I cannot work so the medications are very draining on us.

           
          • huntmode

            January 12, 2014 at 8:13 pm

            Keep trying, Benze. From what I understand, medications in Canada are a heck of a lot cheaper than here in the States. The two sites I referenced determine eligibility by income and the hoops you jump thru, not the least of which was it had to be faxed from my doctor’s offices and I no longer had insurance for a doctor or the money frankly…. Shoot me a reminder, Benze and I’ll see if there’s any way to help from my end.

             
  4. Wanda

    January 11, 2014 at 7:00 pm

    Bill, you give valuable advice here, even for people who aren’t dealing with COPD or other terminal diseases.

    The thing is, as you point out, we all need to be aware of our bodies (and minds and emotions) and how well or not well we are feeling, and, if we are lucky enough to be as smart as you are, we will realize when it is time to seek professional medical advice. I also like that you are your own self-advocate because, truly, who else knows better than you what you are feeling, thinking, etc.?

    You are doing a great job of managing your disease–you are a realist and thus don’t lie to yourself–but you are also well-informed about COPD and its effects and do what you can to minimize its effects, all the while living the most fulfilling life possible. Even more important, as demonstrated in this post, you are generous to share what you know with others, in the hope that your experience will benefit others.

     
    • FlaHam

      January 11, 2014 at 9:50 pm

      Wanda, Thank you as always for your strong and supportive comments. I still owe you so much for helping me get this off the ground. Sometimes when I am on my soapbox, I think I am saying the obvious, but then I realize nope, there are still bunches of folks out there that need to hear this, and I am proud to be up there. Managing this is like managing any other thing, some days I am better at it than others. But that to is part of like. I will continue to do this until I can’t. Again thank you so very much for your continued support. Bill — xo —

       
  5. Chatter Master

    January 11, 2014 at 7:52 pm

    Bill, I’m glad you’re holding steady.

    I am feeling more and more educated by your posts. I think I told you that I deal with folks who quite often in their medical history tell me they have “COPD”. To be honest, I had NO clue what that meant. In addition to appreciating who you are and the joy you have brought to my EVERY day (I do miss it when we don’t ‘chat’) I am so appreciative of the education you are giving me.

    I’m glad today was good. And I noticed you said the docs said you had 3 to 5 years. Later you said something about 5 years. So you have reached the end of their ladder. I’m glad you are using your own ladder. 🙂

     
    • FlaHam

      January 11, 2014 at 10:16 pm

      Colleen, I am truly glad to help you in anyway I can. Yes, way back in the olds days when we just met you told me, but we never really when into any details. I truly do enjoy helping learn. I know while I was getting my PHD in cussing, I was helping you earn your Masters. If we can continue this for COPD we will both be in good shape. Colleen, you are a pleasure in my life, I love reading you words of wisdom via the stick folks. That alone is worth the price of admission. Those stick folks have opened my eyes in many a pleasant way. Like you, I love our daily exchanges. In 2008 I was given 3 to 5 years to live, and in 2012 I again asked the Doctor how much time I have left, and he once again said 3 to 5 years. My doctor has told me that until I get closer to that last rung of my ladder, he will continue to tell me I have 3 to 5 years to live, and damn it I am going to live. So now that I have confused you royally, from the initial 3 to 5 year life span I am now in year 6, for the 2nd 3 to 5 period I am in year 2 (because the clock started again in 2012. In my post when I said 5 years for the 2nd time, I was speaking to all the chest x-rays I have had in the last 5 years. If I had to guess, and that’s exactly what it would be, in the last 5 years, I imagine I have had over 100 different x-rays of my lungs. Yikes’ that is a lot of x-rays. Smiling, I hope I have clarified the numbers for you. If not, just slap me like Gibbs slaps DiNozzo. Take care and have a great weekend. — Bill

       
  6. benzeknees

    January 12, 2014 at 7:20 pm

    Bill, can I ask some questions: what are the numbers you quote in your reports? O2 = 80, Heart rate = 121. Where do you get these figures? Is it because you are on oxygen, you have access to these figures?
    My reality since being diagnosed with COPD is I am tired, all the time. I fall into a nap very easily & I actually go to bed early at night than I have for years because I’m falling asleep. My chest hurts at different times during the day – sometimes it just feels heavy & at other times it feels tight & then other times I get sharp pains. I originally presented to the doctors because I thought I had pneumonia. I feel like I have had pneumonia for 3 months. This is my reality of COPD. I cannot walk 20 steps to the bathroom without being out of breath. I cannot load the washer or dryer without gasping for breath. Sometimes I get so tired I have to stop eating in the middle of a meal. My husband is doing all the cooking, cleaning, laundry & just about everything else for me. I start sleeping every night in my bed on 2 – 3 pillows, but end the night sleeping in my recliner.
    This is my reality now. Some days I’m scared, some days I’m depressed, some days I’m angry. I try to put a brave face on it – I don’t think my husband fully understands how sick I feel all the time.
    Thanks for letting me rant Bill. This is my reality.

     
    • FlaHam

      January 12, 2014 at 9:08 pm

      Benze, I will answer all your questions via a separate email. But let me try and ease your mind somewhat. Every emotion you feel I feel, every bit of despaired that has flowed thru you has flowed thru me. You are not alone. People do care and care deeply. That is the thought you need to keep. I am going out of town tomorrow for a couple days, if I don’t get you a complete answer this evening I will sometime tomorrow. Please take care, Bill

       
  7. jmgoyder

    January 13, 2014 at 7:59 am

    Okay, so you don’t want a pity party and I don’t want to be called wonderful but guess what? We are stuck with each other now! Not that it is pity I feel – but a huge amount of sympathy and, to some extent, empathy (from my various asthma attacks). So this is my turn to call YOU wonderful, Bill and I think your idea of defining some of the terms is fantastic! Love from Julie

     
    • FlaHam

      January 14, 2014 at 10:03 am

      Julie, I can’t imagine anyone better than you for being stuck with someone. I am glad you like the concept of where I am going with my weekly “How I Feel” post. If at any time you want me to define and write about a word I will. The only rule is it has to be something I deal with. Smiling, I couldn’t write about trying on and wearing hi-heel shoes. LOL So keep that in mind. Take care, Bill

       
  8. benzeknees

    January 13, 2014 at 9:10 pm

    Thanks for the follow at Benzeknees Bill!

     
    • FlaHam

      January 13, 2014 at 9:28 pm

      Benze, I need and want to know what your up to. Smiling Bill

       
  9. Clowie

    January 15, 2014 at 11:07 am

    I’m glad you’re holding steady.

     
    • FlaHam

      January 15, 2014 at 3:56 pm

      Clowie, That is very sweet of you thank you. If I could give you a treat I would. Take care, Biped Bill

       

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