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How I Feel for the Week Ending 08.08.14

I missed posting last week, because I was busy and was putting it off, and didn’t really have anything of substance to address. Hell I don’t know why that stopped me, there are lots of weeks I don’t have anything of substance to report but I do anyway.  Today’s music selections start with Toby Keith’s “Blue Bedroom,” and yes you will get a running commentary of the music during this report.  My last reported dated 7.25.14 spoke of the upcoming invasion of my wife’s good friends.  Well they have come and gone, and a wonderful time was had by all.  It wasn’t as difficult as it could have been, and I wouldn’t have missed their visit for any reason.

It has been a particularly trying 2 weeks since my last report breathing.  The heat, the humidity, has caused a constant issue with SOB.  As for breathing the only time I really have felt comfortable at all is just sitting on my ass, but I refuse to do that.  I have managed to keep up with (my self-imposed) chores, and I have stopped and taken breaks when I needed them, which really has been often.  There has only been a very slight increase in coughing the last couple days.  But that cough has been for the most part very unproductive.  The IPod random selector has been in strange mode today, I started off country, and have had 3 selections from Lewis Black (my favorite comedian) intermixed with Jimi Hendrix, Journey, CSN and Aretha Franklin.  These shifts in music really change the pace of my head LOL. Yet at the end of the day when I am brushing my teeth I will have a massive coughing spasm, which is extremely productive.  It’s almost like a pre precursor to an exacerbation, and while I am not down playing the significance of the words, I am not ready to race around shouting the warning.  But I am keeping a very sharp watch.   The only other ongoing medical issue is that I have had a super low grade headache for what seems like weeks.  It is more an annoyance than anything.  It doesn’t worsen in the bright sunlight, and being in the dark makes no difference and playing my music loud has no impact.  It’s just there.  Yes I have advised Hospice and my team of doctors, no one seems overly concerned because by my own admission other than a tiny bit of annoyance it’s not a problem.

I had only one medical appointment this week which was with Doc Head. Without going into a single detail, we talked, and it was good.  Oh what the heck, we talked about my Blog. Last week I was stood up by Hospice.  The nurse that comes to my home weekly and checks me had advised me that she wouldn’t be coming last Thursday, BUT I would be visited by Hospice.  Well that didn’t happen.  So after a stern talking to this morning I was advised that in the future, if I haven’t been contacted by Hospice in a timely fashion regarding an upcoming “scheduled” visit to call them and put them on the spot.  I am quite capable of doing that, and in the future I will abide to this unless circumstances beyond my control prevail. 

I will also admit I am relying on the Morphine for the relief it gives for my SOB.  I have yet to use the maximum of 6 doses on any given day, but will admit that there are times I look forward to that next dose. 

Considering everything available to me, I am going to rank myself as 2.5 for the week.  Of course this rating doesn’t include the normal aches and pains of everyday life. Sidebar; we have been listening to Billie Holiday, Moody Blues, Montgomery Gentry, Nickelback, Cream, Eric Clapton (playing blues), Ray Charles and Muddy Waters during this session. As for my mental attitude I am a 9 this week.  I woke up each day so far, and have found more reasons to smile than frown.  It is difficult to be better than that.

So to wrap up week ending 08.08.14, we are ranking the week an overall 2.5, with a 9 on the attitude scale.  So we can move on to the vitals for the week ending 08.08.14

  • INR = 2.6 taken 07.28.14 – no change in meds

  • O2 level @ 2.5 LPM = 95 taken 8.07.14 — but during the last 2 weeks I have found myself to be as low as 79 pct a few times.  A few deep breaths and some afrin seem to clear things up and my O2 level jumps back into the 90’s

  • Peak Flow = 210 taken 8.07.14

  • BP = 110/64 taken 8.07.14

  • Heart rate = 95 taken 8.07.14

  • Temp = 98.5 taken 08.07.14

  • Weight = 263 taken 08.07.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 08.08.14, moving now to the word of the week discussion aspect. This week I will be giving my 2nd official report on the Hospice “experience.”

On June 1, 2014 I posted my 1st official report on being under the care of Hospice.  At the time I advised that it wouldn’t be a regular weekly report but one that I would share from time to time. Going into my 6th month under the care of Hospice I thought I should provide a view from the front row.  Since my involvement with Hospice there has been only 2 weeks where someone from Hospice did not visit my home.  One was planned, the other I fell thru the cracks.  I am sure if I were displaying serious signs of illness I wouldn’t dropped thru the crack.   Folks shit happens and sometimes the best laid plans don’t work.  I was busy last Thursday and them not visiting allowed me to get other things done.    That is my biggest gripe.  Not bad for a 6 month period.  Now on to the nuts and bolts of this report.  Each week I can expect to be contacted by Hospice at least twice.  One is a call that comes in around 930am each Thursday.  This call is a medicine check.  I am called by a cheerful volunteer that gathers the needed info and passes it on.  The reason for the Thursday morning call is that allows Hospice time to fill the medicine, and deliver it to my home by 5pm on Friday.  They make 2 attempts to deliver each Friday then they will call you until they contact you, and then make the delivery.  I know this because I am so anal and I will call for a prescription refill before it is needed. I will make the refill request even if I have plenty to get thru the weekend.  So getting the delivery is not an issue as long as I have it by Monday or Tuesday at the latest. While it may not be an issue to me, it sure is to them.  If I say I need meds it becomes their mission to get me the medicines before COB (close of business) on Friday.  They are always supper polite, and I have never been asked if I can wait until Monday.  There is only one place I get better service that’s my Publix Pharmacy, but Publix makes me pay, and they don’t deliver so it becomes a push.  The 2nd call is my nurse scheduling my weekly visit.  This visit consists of my nurse taking my vitals, and “chatting” with me, I am sure part of the chat is to check the status of my head.  Clearly (at least to me) they are checking for signs of depression, or negative drug reactions, making sure I haven’t fallen, that my mobility isn’t an issue, and probably several more little things I haven’t quite figured out.

Each month I am also called and visited by a counselor, again to check me out.  Offering to have volunteers come in to do chores around the house, to do some grocery shopping for me, or just to sit and visit.  So far I have passed on these offers.  As I have stated before I can still manage my chores they take far longer, but I still get them done.  I go to the grocery store 3 or 4 times a week to pick up odd and ends, and to flirt.  I also use the aisles as my exercise area, pushing the shopping cart up and down up and down up and down. I can only walk by the ladies hygiene area so many times before management watches LOL LOL. JUST KIDDING!!!.  But those trips to Publix are therapeutic.  My best buddy Art comes over at least twice a week to BS and play cribbage.  While I appreciate the offered services, until I absolutely need them I will manage on my own and with the support of my wife, family and friends.  Sidebar; it has been an extremely interesting day of music, with some comedy thrown in.  I am especially tuned to the head banging music of Marlyn Manson followed immediately by Reba McIntire, that may account for why some of my post seems disjointed.

I have yet to use all the offered services that are available to me from Hospice, but as time passes and my condition changes I am sure I will have my opportunities.    So far I have only spoke to those things I have 1st hand knowledge of, if you have a question please feel free to ask.  I will find out and let you know how it would be handled by these folks if or when I need that service.

As always if you have any questions, concerns, or comments please feel free to bring them to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

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A Timeline for the Progression of my COPD….

Since I have started my blog many folks have asked me about the progression of my COPD, I have been asked; do you know what caused it, how long have I had COPD, when did it start or and how fast has it moved taking over my lungs.  None of those questions do I have definitive answers.  One of the easiest answers I do have is; my COPD didn’t start the day I was diagnosed. 

My COPD started a long time ago.  It may or may not have started with the first cigarette I smoked, or maybe the 1st time I came in contact with asbestos could have been the trigger, then again maybe it was that 1st bad cold or the 1st time I got bronchitis.  My doctor tells me I was predisposed to COPD, like others are predisposed to heart disease, cancer or kidney disease.  Even if I did everything right, lived in a bubble, exercised, ate correctly, and got plenty of rest I could/would have end up with the COPD. This post is about COPD because it is the disease of those I mentioned that I am the most familiar.

There are four stages of COPD; they are Mild, Moderate, Severe and Very Severe.   Very Severe COPD is now starting to be referred to as “End Stage” and I like term better than Very Severe.  This post is about how I have progressed thru the stages of COPD.  I will to talk about it in hindsight, trying to pick up the clues of the disease, recalling bouts of chronic bronchitis, how often I was sick, the duration of the bout, what did I did to prevent future bouts, I will also share what if any medications I can remember. Hopefully this will show folks how slowly COPD takes over your lungs.  Also I will describe circumstances that I feel are unique to me, which has expedited the disease thru my lungs. Which unfortunately for me has possible reduced my life span by as much as 10 to 15 years.

I suspect the reason that the COPD stages begin with MILD rather than some lesser descriptive word is that by the time you are diagnosed you are there, you’re not working your way towards COPD, you already have COPD. I began to suffer the leading edge signs of COPD about 30 years ago.  This was about the time that I started having issues with bronchitis.  During my mid 30’s I was having documented cases of bronchitis at least 2 times a year (where I actually when to a doctor and was prescribed medicine), in addition there were at least one or 2 more incidents a year that when undocumented (where I didn’t go to a doctor, or get medication, I just suffered thru it).  Back then I could get over a case of bronchitis in 4 or 5 days. The Zpak was the most common form of medication used back then. Maybe amoxicillin if memory serves.   

I was officially diagnosed with COPD ten or so years ago (around 2004). But please understand I had been suffering the symptoms and had been treated for chronic bronchitis for almost 20 years prior to the “official diagnoses.” The diagnoses came as a result of a breathing and sleep test, and at the time I was told I was in the Moderate (but tail end) stage of COPD.  All the benchmark signs were there long before I was diagnosed; getting winded with heavy exertion, colds that became the flu, which later became bronchitis. When I was diagnosed with COPD I had already stopped smoking for over 10 years, and while I got some of my wind back after I quit, it all never came back! But also, I was not in good shape, I was extremely overweight (and still am), my diet sucked, I did not have an exercise program, and my exercises really consisted of meeting the needs of family and doing family related chores (cutting grass, weed wacking, building flower boxes and the like). Being honest I just didn’t take care of myself.  Another indication that led to my diagnoses of COPD was a review of my medical history.  At this point I was having at least 2 serious bouts of bronchitis a year, I was given a Zpak, I was advised to nebulize Albuterol 2 or 3 times a day, as needed, I was prescribed a rescue inhaler, and I was also treated with Amoxicillin for 10 to 14 days.  I took all the pills as directed, but was extremely lax on using the nebulizer, and even more lax (if possible) with the rescue inhaler. Also the bouts of bronchitis were so bad that I was missing more and more time at work.

Two events happened over the next 4 years (2004-08) that rapidly moved me from Moderate to Severe and into Very Severe COPD.  In July of 2006 I had a Bi-lateral Pulmonary Embolism, amazingly I only missed a couple weeks of work, but it took months to regain my strength. Also I did notice a significant difference in my ability to breath.  Everything was more difficult, but it was still manageable and I was not on Oxygen 24/7.  The second event took place in March 2008, I had heart bypass surgery.  Two days after the surgery a hole developed in my left lung, right behind the heart. It was decided to see if the hole would heal itself (for 10 days), it didn’t, and about 14 days after heart surgery I was again on the operating table having the hole in my lung repaired. I am not going into all the details here, but I ended up spending over 100 days in the hospital, and came out of the hospital on oxygen 24/7/365 and in the END (Very Severe) stage of COPD.  Once I was well enough to take a breathing test it clearly showed how rapidly my disease had progressed, and that I was now in fact in the End Stage of COPD.  I do not for a moment believe this is the natural progression.  I believe that between the bi-lateral pulmonary embolism and the surgery on my left lung to repair the damaged lung greatly spend up my deterioration. The result was I sped thru the Moderate and Severe stages of COPD right to “End Stage.”  I truly believe that had I not suffered from the Pulmonary Embolism and the damage to my left lung that I would still be in, the (at worse) Severe stage of COPD.  It is my opinion that these 2 incidents move me closer by (at least) 10 or so years closer to the end of retirement.

Another factor which played heavily in the deterioration of my lungs is an immune system deficiency. My immune system was in such a state that the system’s ability to fight infectious diseases such as Pneumonia, MRSA and Pneumonitis, (treated with Zyvox, Colistimethate, Doxycycline, Cefepime, Meropenem, TOBI and Cipro, to name a few, those drugs with lines drawn thru them no longer have an impact on the Pneumonitis or MRSA which has colonized in my left lung) was compromised or entirely absent when discovered just 2 years ago. Doc Infectious (who was called in by Doc Lungs), ran a series of blood tests that shows my immune system barely functioned. When discovered it was determined that my system not been running at any level of efficiency for years. Allowing the COPD diseases to have a far greater impact on my lungs than someone whose immune system wasn’t compromised. Doc Infectious began treating this with a monthly (for the last 20 months) 5 hour IV treatment of Privigen.  My immune system now performs at the lowest level of normal, which I truly believe has played a significant role in my only having 2 hospital stays in the last 19 months.

All of this sounds very grim and to some it may sound crushing.  But I have lived with COPD for over 30 years, and I am not done yet.  Without complications such as; heart disease, the bi-lateral pulmonary embolism or the hole in my lung, I might not even be in the “End Stage” of COPD.  During my progression thru my disease I have learned that exercise is a tremendous help, eating correctly, managing your weight, communications, stopping smoking, doing your best to remove irritants from your environment, gathering support when and where you can, and most importantly maintaining a great attitude all will play a momentous part in your longevity.  Even if it doesn’t lengthen your stay, it will make your stay that much more pleasant for you and those you care for.

Folks this is my story, your story will be about you. This post talks about me, and it is but a snapshot, I realize I probably haven’t covered all I said I would, but like I said, it’s a snapshot.  How you deal with the disease is your business.  My blog shares how I have dealt with my COPD. Hopefully you don’t run into complications, maybe your COPD was caught at such a time and place where if you change some basic habits now, you will not only increase your stay, but your quality of life at the same time.  Right now there is no cure for COPD, but that would have been said for a lot of diseases over the years.  If you’re in the earliest stages, you have to imagine that the cure will be discovered during your life time. Smiling I have had COPD for over 30 years; I got COPD before it even had a name.  And even though I am in “End Stage” I haven’t given up, all I would ask is that you don’t give up either.

Folks as always if you have any specific questions you want to ask or if you have comments or concerns you want to share, please feel free.  Take care, Bill 

 

 

 
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Posted by on July 31, 2014 in Observations, Ramblings

 

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How I Feel for the Week Ending 07.11.14…

It was nice to see that you’ll made it thru the 4th with little to no issues.  Some of your pets were stressed I am sure and I do hope they have recovered.  But now that should be the last of the significant fireworks until, until hopefully New Year’s.  Oh, by the way, it is Saturday July 12, 2014 and I am just starting my weekly report. So don’t be greatly surprised if you don’t see this until sometime early tomorrow afternoon.  Sidebar; we begin the day with Travis Tritt, “Anymore”.  The weather has been so so this week, the normal hot and humid weather we expect in Florida, but the sea breezes have been playing hell with us, and have screwed up the weather pattern, this week we have a lot of AM monster storms, with the evenings being clear and calm. Forecasters say things should normal out by this weekend. We will see!  The reason I mention the weather is because it has significant impact on how I feel during a given period. Heat and Humidity just eat my lunch and leave me quite weak.   But I am sure if I lived any of places I have lived in the pass the weather would have the same impact, so Florida isn’t the problem LOL.  

I saw Doc Head this past Monday, and as always I found that to be productive.  It doesn’t matter to me what we talk about, it helps and I like talking.  I only have one medical appointment this coming week and that is for my monthly IVIG treatment.

One of the many gauges I use to evaluate how I feel for a given week is the amount of specific drugs I use on an “as needed” basis.  Two of those drugs are Morphine Sulfate .25ML to be taken every 4 hours (as needed) and Alprazolam .5 MG table to be taken every 8 hours.  Both of these drugs are used to ease SOB and both of these drugs are quite effective and addictive.  It is my understanding (drilled into me by my Doctors) that at the dosage levels currently prescribed I have very very little to be concerned about.  Besides as explained (and these are my words) I don’t need to be concerned if I become addicted because end of retirement will arrive before any impact from a potential addiction becomes an issue. Having said all that, I have been extremely careful in my usage of these drugs, and there hasn’t been a day when I have used all the “as needed” dosages.  But for four days this week I have wanted to, and have reached for these medicines far more often than normal.  It is for this reason I am going to give myself a 2.5 for the week, it could’ve been lower.  As for an overall general health assessment, yes the SOB is wearing me out.  The harder it is to breathe the harder it is to do everything else.  I have all the aches and pains an out of shape 64-year-old would have,  so if I didn’t have COPD I really would have very little to complain about health wise.

On the bright side, if I were scoring the week of a combination of mental and physical health I would have given the week a 7 because of the emotional high I got this week, which by itself would have been a 10 on my 1 to 5 scale.  Were 1 equals “death sucking on a lifesaver”, and 5 being able to play golf without the assistance of supplemental oxygen. Sidebar; DL Hughley then Hendrix, followed by Garth Brooks, then CSN, Gretchen Wilson, AC/DC, then Nickelback, Ray Charles and now Aretha Franklin, followed by Marilyn Manson.  No wonder my head spins sometimes.  So as a wrap up we are ranking the week an overall 2.5, with a great mental attitude. So we can move on to the vital for the week ending 07.11.14

 

  • INR = 2.3 taken 06.30.14 – next test will be 07.28.14 – but no change in meds

  • O2 level @ 2.5 LPM = 93 taken 7.10.14

  • Peak Flow = 215 taken moments ago, 7.11.14

  • BP = 108/62 taken 7.10.14

  • Heart rate = 102 taken 7.10.14

  • Temp = 98.7 taken 07.10.14

  • Weight = 266 taken 07.10.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 07.11.14, moving now to the word of the week discussion aspect. This week I have chosen “COMMITMENT” as the word of the week. As I normally do I will start with the dictionary definition for the word.

http://www.merriam-webster.com/dictionary/commitment

Commitment Definition com·mit·ment  — Noun – a) promise to do or give something b) a promise to be loyal to someone or something c) the attitude of someone who works very hard to do or support something 

Go to the link above if you want or need a more complete definition of commitment.

I struggled all week looking for a word that I wanted to address, it came to me the moment my preacher spoke of it during church today and as it as it relates to being a Christian that our commitment to being Christians is not a 9 to 5 job. It was great sermon, her sermons generally are great. 

A little over 7 years ago I was “officially” diagnosed with COPD. (But please be assured that I had been working up to this official diagnoses for 20 years) I was already in the moderate stage and pushing against the severe stage real hard.  Doc Lungs told Steph and me that it is terminal, and there was no cure, and at best I had 3 to 5 years.  I don’t remember what we spoke about for the next 10 minutes, we left his office in silence, I am sure we both had that super stunned look. I know I moped around a bit, and 2 weeks later I was back in Doc Lungs office.  He sat with me and said “Bill, I will commit to you that I will do everything in my power to help you manage this, we will change your medicines as new “better” ones become available, and I will work with you every step of the way.  But this will only work if I get your commitment to fight this as best you can, if you don’t fight I can’t help.”  It was at that moment I made the commitment to fight my COPD with every tool at my disposal, that I would not wallow in self-pity, I would not bemoan my illness, and that I would be my own advocate, that I would enjoy the remainder of my life to the best to my ability.  Sidebar; we have been listening to Trace Atkins, Lewis Black, Montgomery Gentry, Aerosmith, SRV, more Nickelback, AC/DC, Cream, 3 Doors Down, Mountain, Rob Zombie and the Eagles during this session. Folks I have honored that commitment for 7 years, and I will continue to honor it. 

This blog is a direct result to that commitment and the fact that my wife just nagged my ass, again and again and again, until I finally gave in and said “FU…. It!” And I started writing with the goal to help and educate as many people as I could. I am not a quitter, (hell I couldn’t quit smoking, BUT I DID STOP), and in a little over 2 years I have written a 286 posts of which 114 are “How I Feel’s”.   I have reaffirmed my life for Christ, but I also have made the commitment to live as healthy as possible.  I exercise everyday even if it’s just pushing a shopping cart up and down the aisles at my local Publix, or ensuring the laundry is done, folded and put away. I watch my weight and it watches me, when my wife is home I cook and eat better, healthier meals.  I try to rest but sleep does elude me sometimes. I maintain a positive attitude, and I really don’t fret about the end of retirement.

That said we all have choices.  When we get devastating news that we or someone we love and cherish has a terminal disease, or one that has no cure, or both, or even if you’re as heathy as a horse. With that news comes choices, and you can choose to make the necessary commitments to make the most you can before the end of retirement.  You can make commitments to eat better, to exercise more, or to stop smoking.  You can make commitments to get your personal life in order.  To not burn bridges, and to try and mend those bridges that have been burnt.  You can commit to your Doctor, to pay attention to what he or she has to say, and do your best to follow his instructions, you can also commit to keeping your doctor informed of the changes you feel within, because as you live thru this you will usually notice changes in your daily health pattern long before a hospitalization is needed, if you’re aware and in communications with your doctor.  You may be ill, but you still need involved in your health.  These are commitments you can make to yourself, your family, your friends, and your doctor which can all have a positive impact in a negative world. Hell you can write a blog, it sure has helped me.

As always if you have any questions, concerns, or comments please feel free to bring them to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

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The Feast is over but not forgotten !! subtitle – the post FEAST workout.

The kids (Allison, Stu and Cari) arrived on Tuesday evening on time, well actually early, which is a very rare event.  Steph and I had prepared (well Steph prepared, I cleaned) a smorgasbord of Chinese dishes for dinner, which were consumed immediately with great gusto.  The family retired to the den, to sit, relax, and plan for Wednesday which was our Thanksgiving.  Those decisions made, Allison invited (challenged) me to a game of Triple Yahtzee, a tradition of sorts when we celebrate any holiday.  Being the wonder father I am I said sure (knowing full well I would kick her butt).  As we sat down at the kitchen table, Cari my 8 year old daughter asked if she could play. Allison asked her if she knew how to play, and she replied, “yes, we play it in school.”  That being said, we said sure, knowing that the game just got longer, and we would spend a considerable amount of time explaining to Cari what was going on, and how to keep score, and even strategy.  Lord could I have been more mistaken.  Clearly Cari had played, clearly she understood the game, and clearly she had some sense of strategy.  I was so wonderfully amazed.  Then DAMN IT!!! she kicked my butt.  She had her own little rendition of the Happy Yahtzee Dance, and a little song to go with it.  Not only did I hear the song once during the game, I got to hear it a second time.  True to my thinking I did kick Allison’s butt, but Cari KICKED mine.  It was wonderful.  But it did get tiring, over the 2 and half days the kids spent with us, Cari beat me 6 out of 8 Go Fish Games, I had one win and 1 tie.  She also spanked me at Sega Racing on my MY Xbox.  Cari was so joyful, having the kids here for thanks giving was wonderful, and I hope that we continue to find a way to have Thanksgiving together as long as I am available.  The meal did take over 5 hours to prepare, and also like predicted it took 30 minutes to consume.  Dishes were complete washed and put away an hour later.  It was a wonderful feast.

One of the many wonderful comments I got about the Feast came from a very dear and very special blogger Chatter Blog.  If you want insightful, meaningful, fun, and honesty put together in a short wonderful message, please check her out.  Anyway, Chatter asked (kinda demanded) that because I made her gain “13.2 pounds just reading this” that I had to create a workout to help her lose that which I freely gave her.  So with that in mind, and out of total respect for Chatter, I have developed the following as a sure way to shed some of the weight I caused, but you have to help by not having 2nds and 3rds and the some extra like I did.

Folks this was my workout which I did 3 times a week while in Pulmonary Rehab.

treadmill – 40 minutes at 2 mph

Arm Crank – 30 pct resistance for 15 minutes

Airdna Bike – 300 rpm for 15 minutes

Recumbent Bike – set at level 3 for 15 minutes

Airdyne Arms – set at level 4 for 15 minutes

Stair Stepper – set at level 3 for 15 minutes

Weight training – 10 stations, 3 sets of 20 at each station, weights varied from 30 to 150 pounds.  Leg work was done at 150 pounds.  Arms and shoulders work anywhere from 30 to 50 lbs.

Sit ups – 3 sets of 20

I would be sweating like a pig at the end, but quite proud of myself.  Being honest this was quite easy (not really) but because I had my IPod and was listening to my tunes all was right with the world and I could get thru it.   

 

The very 1st time I when to pulmonary rehab, the lab had a source of music that was not tailored to my needs at all.  I remember distinctly the tunes were from an era and grouping that left me wanting for something anything to help motivate me.  Listening to the provided music was more difficult than the actual workout.  From the 2nd workout on, I brought my IPod with my 1700 potential songs. Setting the IPod to random made for some unique song grouping, and as a result I created the playlist called “Walking Music.”  I would dawn my headphones and work my way around the gym, the music made the workout a pleasure.

When I walk on the treadmill, I always hold the hand rails. But I close my eyes blanking out the world to me and my music.  Folks I am here to tell you I can’t carry a note in a basket.  Cats having their tails under rocking chairs sound much much better than I do singing.  And here in lies the problem.  With the headset on, and in my own little world I sometimes don’t lip sing, I actually sing, and sometimes quite loud I am told.  Anyway, one morning while walking on the treadmill, I was gentle touched by one of the nurses.  She said, something along the lines, of that while I liked how I sung, and while for laugh factor it was great to hear me sing, the other patrons were not as into my music as I was.  I was asked to make a very real effort to not SING, especially the lyrics to some of the songs, on my playlist. That Playlist is below.  My workout generally lasted 20 songs.  Because I had it set up to be random I never knew which song was going to be next.  But by looking at the list you can get a feel for the type music I enjoy.

Slide1

 

 

 

I am sorry for the sizing of the “Walking List” but if you get your readers, and a magnifying glass you should be just fine.

Folks, if you follow the guidelines for the post Feast workout, and if you have yourself a great playlist.  You should be able to get rid of any extra pounds I caused.

As always if you have any questions, concerns or comments, please share them.  Take care and have a great Day.  BTW let the shopping begin in earnest.  — Bill

 
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Posted by on December 1, 2013 in Grandpa Stories, Humor, Observations, Ramblings

 

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This Blog is about COPD…..

Folks when I write, I don’t write about cancer or kidney failure or tumors, or many other diseases, because I don’t have any real personal knowledge of them, I write about COPD because that is the evil I know, but even then I am not an expert, I don’t have all the right technical words, and I can’t quote the best meds.  But I can and do write from the heart.  You can argue about any factual claim I make, because I am not an expert, I am just someone who suffers from this disease. But what I do try to do is write for the folks that can’t or won’t.  I am sure a lot of folks out there would like to be able to open up they’re soul and just yak about it, but have better sense than I do.  There are tons of folks sicker than I am, further along than I am that could add volumes to what I have to say.  And I wish they would, I would read every word.  But I also know there are folks out there that have just been diagnosed, that don’t have a clue as to what is in store. And hopefully this helps.  Yes parts are negative but much is positive.   To them I can’t stress enough to get a doctor you trust, get a doctor you trust, get a doctor you trust and if necessary change your lifestyle to something that will best serve you in the future.   You don’t have to make monumental changes slight changes can help you greatly.

In June 2012 I started this blog as a means for me to talk about the disease that was claiming my life.  I wanted to spread the word, I wanted to talk about COPD, I wanted to share my feeling, and what I was physically feeling.  In addition I wanted to talk about things that folks with terminal diseases usually don’t want to talk about, I wanted to share the emotional ups and downs of being terminally ill.  For the first 20 or so posts I had remained true to that mission.  Now in November 2013, I have posted 187 times. The significant portion of these posts don’t even mention COPD, they don’t tell the reader I have COPD, and if the reader doesn’t read any of the “How I feel today” posts the reader wouldn’t even know I was ill, hell if all you read were how I feel today, you would go “that’s not so bad” why is he bitching.

Let me take a moment to refresh you on what COPD is… A non-clinical description would be that the lungs are made up of thousands of little pockets that capture the oxygen from the air we breathe.  These little pockets then transfer the oxygen from the air we breathe into the blood and everything is good.  But these same pockets in a sufferer of COPD, begin to fill with crap, the more crap, the less air, the less air, the sufferer has shortness of breath, and an inability to complete tasks and life functions as they had in the pass.  This gets progressively worst.  When the pockets become filled they die, and can’t process the air into oxygen for our blood. As the disease continues there are less and less pockets to make this transfer. With each infection, with each exacerbation, more and more of these pockets become filled with crap and no longer function. There are a limited number of pockets available, the body doesn’t regenerate them, once they are gone, their gone!  And as you can see, the more of these pockets that die off, one’s ability to breathe declines.

Here is a more clinical definition of COPD…. Chronic obstructive pulmonary disease (COPD) is an umbrella term for a group of respiratory tract diseases that is characterized by airflow obstruction or limitation. It can be caused by tobacco smoking, coal dust, and a wide variety of other stimuli.  Individual can also be pre-disposed to having COPD, without ever smoking or living with a smoker. COPD is also known as CORD, COAD, COLD which respectively stand for chronic obstructive respiratory, airways, or lung disease. COPD has been referred to as CAL which stands for chronic airway limitation. COPD is a progressive disease. Obstructive changes in spirometry and decreases in diffusion capacity are typically seen before symptoms occur. Early signs and symptoms are shortness of breath on exertion, recurrent respiratory infections or a morning cough. As the disease continues, the symptoms are seen with increased frequency and severity. In the late stages, the patient often experiences severe cough, constant wheezing, and shortness of breath with minimal exertion or rest. At this late stage, progression to respiratory failure and death is common. It used to be thought that progression is typically caused by the patient’s continued exposure to tobacco smoke, but that simply isn’t true,  once you have the disease it progresses, changes in behavior, in exercise, in eating habit, can all slow the progression, but the disease will continue. Although medications often decrease symptoms, it is not believed that they prevent the progression.

From time to time a person suffering from COPD will have an exacerbation, which in its’ simplest terms is a flare up of the disease.  Sometimes these exacerbations are given the label “pneumonia”, and can put the individual into the hospital.  Sometimes the exacerbation is such, that the individual is not hospitalized but treated at home with an intense drug therapy. One of the benchmarks for an exacerbation is when specific antibiotics and/or oral corticosteroids are prescribed to combat the illness, or if hospitalization is required.   LOL in the clinical information I studied to create the above; one of the statements I read said no new exacerbation can start before the end of an existing exacerbation.  To me this is a real DUH !!! moment, and strikes me in my funny bone every time I see it. Also something that struck me funny is that according to the stuff I read no exacerbation is over until the doctor says so.  Clearly these are 2 “that ain’t no shit” statements.  I guess its doctors putting on their lawyer hats. Apparently frequent exacerbations are those that happen more than 2 times in a year.

I have just spent the last 300 or more words defining COPD and Exacerbations, and what it does to the body.  But I haven’t said a single word on what the disease does to the human.

I haven’t talked at all about physical limitations; the need to sometimes stretch one’s neck out to feel they can eat, or having to take smaller bites, and allowing that food to clear the passage way before the next bite. I haven’t spoken about having to grab a counter top to get from one side of a room to the other side.  I haven’t spoken about how difficult it is sometimes to take a shower.  I haven’t talked about how it severely hinders one’s sex life. I haven’t talked about getting dizzy walking to the mailbox and back without the supplemental oxygen. Nor have I spoke to the thousands of other things COPD makes it almost impossible to do, the keyword is almost.  But I will try in this post (well not all of the impossible things), but thru out this post I will add specifics to the short list above.  Also I haven’t spoken about the stress it puts on a relationship, or how COPD plays games with and in your head.  But I will try in this post.

I have used this example in the past, and it still is the most representative of how difficult it is to breath with COPD.  Take a small straw (a coffee stirrer) cut it in half and put each half in one of your nostrils, close your mouth and breathe thru the straws.  Heck, get a regular size straw for that matter and try that, if you’re using a regular straw that is approximately how an individual in the early stages of COPD feels, every second, every minute, every hour, every day, 24/7/365.  If you found a smaller straw, that’s how it is for me generally, but I will admit to having good days, and some not so good days.

If you catch COPD early with a great Doctor, a great diet and a great exercise program, and you watch everything you touch, you can keep COPD at bay for a long time.  And by at bay I really mean you can extend your time without a lot of lifestyle changes.  If you lucky, something other than COPD will kill you first. But folks, I have never heard of anyone dying of old age that had COPD.  I am not making light of COPD or dying, I am not trying to make jokes about it.  I have caught hell from other COPD sufferers for being so outspoken, or maybe flippant about the terminal nature of the disease.  For not being a Pollyanna, but folks the truth is COPD IS TERMINAL, it is the 3rd leading cause of death in the US, and soon will be the leading cause of death in this country.

That folks in the nutshell is the physical aspect of the disease.

But let’s not forget, COPD gets into an individual’s head.  It does so the moment the doctor says, “You have COPD and it is terminal”.  I remember the 1st time I heard it, my wife and I were at my pulmonary Doctor’s office.  We had the last appointment of the day.  Steph came with me to hear 1st hand what the doctor had to say.  In my case Doc Lungs said “Bill, you have COPD, in your condition you have a 50/50 chance to live 3 to 5 years.”  I don’t remember the date, but I remember those words clearly. We asked all the right questions, what can we do to get the max amount of time, what drugs are available, can I get a lung transplant, what will happen if I change my diet, and lose a bunch of weight, and on and on.  Doc Lungs answered each question in depth, and he didn’t sugar coat the answers, which I appreciated greatly, Steph was in tears for a part of the appointment, but she paid close attention to Doc Lungs, took notes, and left the appointment bound and determined.  Folks that appointment was 6 years ago, I have changed my diet somewhat, I have exercised somewhat, I have lost some weight somewhat, and it has all helped.  Because I am still here and earlier this year Doc Lungs again said I had a 50 pct chance to make it another 3 to 5 years.  He is doing the best he can and I know it, that’s why I take his word on face value, and move on.  I have never look at a calendar and said there’s my end date.  Each year I buy a calendar 4 months before the old one expires.  And let me say I like calendars that expire before me.

But for 6 years the debilitating effects of COPD have had their impact, on my body and my head.  Six years ago I played golf every week sometimes 4 or 5 rounds in a week, I played poorly but I played, I can’t play anymore, and trust me I have tried.  During my heyday, I could drive the ball 240 + yards regularly, when I stopped playing I could hit a 3 wood maybe 135 yds, I didn’t have a club in the bag that I could carry 140 yards. When I 1st went on oxygen, I could play a shot without supplemental oxygen, I could walk 30 or 40 yards to the green, stand around putt, and walk back with the group.  Before I stopped I tried dragging my portable concentrator to the green but that extra 13 lbs got to me.  I stopped having fun, so earlier this year I gave up my golf clubs (they had sat unused for 2 years).  Up until this season, I have bowled in a winter league for the last 25 years.  I gave it up this season.  When I go grocery shopping the 1st thing I look for is a cart to put my oxygen machine it, because it is easier to push a cart than pull the 13 pound portable oxygen concentrator.  Imagine when you bend over to tie your shoes you become out of breath.  Walking 40 yards without the supplemental oxygen leaves you breathless, almost to the point of hyperventilating.  The simple act of peeling a pound of shrimp makes you physically stop to gather yourself.  Carrying the grocery’s from the car to the kitchen, makes you stop and pant for a minute to gather yourself. But these are physical acts, if you have COPD you learn to adjust. You learn to give yourself more time; you learn to accept the help of the grocery store in loading the car.   You ensure that you have something in your path to grab onto if you become real short of breath.  The physical limitations as tough as they are, if you have COPD you learn to adjust to them.  You don’t have to stop making love, but you do adjust for your condition. You can go to the grocery store, but take your time, and don’t try and carry 9 bags at the same time.  Have a cart handy to help you move stuff.  Check with neighbors to see whose teens some extra spending money.  There isn’t a single thing I can’t do today that I could do 6 years ago.  Some things I have made a conscious decision to stop doing, but if I were willing I could.  And I believe that includes golf.  The disease forces you to change habits and to recognize limitations.  But it doesn’t keep you from life. But folks as hard as it is to adjust to the physical limitations, and these change constantly as well, it is the mental adjustment one has to make which is so much more difficult, in my opinion.

I don’t and I won’t be sexist about this because COPD is not gender specific, it kicks males and females alike, equally hard.  But being a guy I am clearly more comfortable talking about it from the guy perspective. Mentally it kicks me in the balls! It robes me of manhood. It makes me think less of myself.  It embarrasses me; it makes me feel less manly. Folks, I hide my condition to the best of my ability. I truly do, and only a select few know just how hard it is for me.  Thank God I have an outgoing personality that allows me to use words and smiles and stupid ham tricks to build and maintain a positive image.  But folks I am constantly embarrassed by the need to use the handicapped parking, I have a roll-a-bout which I only use if I have to walk any distance over 50 yards without support, and using it embarrasses me, it makes me feel years older than I am.  I think less of myself for not being able to do manly chores around the house, or to not be able to fix and repair things like I once could.  Sometimes I need to use the grab bars in the bathroom to take a shower, or if I am recently recovering from an exacerbation I have a stool to sit upon as I shower. Having said all that I think I am finally over having to wear the cannula all the time. I am a member of a discussion group that focuses on COPD, and without that group I don’t know where I would really be, soft smile, there is strength in numbers, and my group gives me the numbers.  We all suffer, some (not me) suffer quietly, some hide, some ache, but thru the group we all gain strength. We encourage each other, we support each other, and we share with each other the things that trouble us, the things that get us down and the things that make us smile.

Folks the process of dying isn’t fun.  I have rambled on and on, and I don’t know if I have said all I wanted to, but for those of us suffering from a terminal disease, one of the battles we constantly wage war against is depression.  But I must say this now and a million more times, depression is not a disease that focuses on the terminally ill.  Depression is not a disease that is age sensitive.  Depression is not gender specific, it can and does touch everyone, every age, every sex, every sexual orientation, every occupation, strong or weak, depression can find you and take you over. I don’t have a pill that cures you or me (but some pills can help), I don’t have something to read that changes things and makes it all good (but volumes and volumes of words can lift your spirits), I don’t have a special song that suddenly lifts my spirits (but I have many that do, but I also have many songs that will make me cry in a second).  For the most part I do know when I begin to slip towards depression. I also need to say that I believe there are degrees of depression, and that not all forms are critical. I don’t know all of the things that trigger it (but I know a couple of my triggers), and trust me I don’t recognize immediately when I am about to slip into the various types of depression.  But I know pretty quickly when I am feeling down.

My blog is about COPD, and from time to time I feel the need to ramble on about it.  The rambling helps my head, it lightens the load I carry, and it makes the real issues less burdensome.  For some it opens their eyes, for others it makes them want to bury their head in the sands.  Some find my words, words they want to scream out.  I just hope that it helps someone some small bit to either understand what might be going on with a loved one, or opens a door of understanding for them.

I am going to stop now; this has gone on and on.  I asked a very good friend if she would edit this post, because I felt it was going to be my version of “War and Peace.”  But she said no, she said get it all out, spill your guts, actually she called it “verbal vomit.”  And I thought I used earthy words LOL.  But I respect her greatly, so folks you have been subjected to my “verbal vomit.” If you have any questions, concerns or thoughts please feel free to add them.  Thank you for taking the time and expending the energy to get thru this.

Please take care, Bill

 

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Let me just talk about COPD for a minute……

It has been a considerable time since my last pure post about COPD (chronic obstructive pulmonary disease). I have been giving folks an update on my general health at specific times, but that is just an update. And while these updates relate to COPD, they are about my health and really not about COPD. Though it can be said that any and all of my health issues relate back to COPD.

I stated this BLOG in June 2012, and while nothing of any real significance has happened in the last 6 months on the medicine and health advances aspect of COPD, it has gotten a ton of press. I have seen articles on Yahoo, the local newspapers, and a variety of other written forms of publication. I have also seen segments on Today, and other national shows. So the word is getting out, and the more the word gets out, the more attention the disease will get. And this will be the key to making real headway against this disease.

Here are some COPD facts:

COPD is the 4th leading cause of death WORLDWIDE now, by 2020 expected to be 3

75 percent of those affected remain untreated

The World Health Organization estimates 600 million people worldwide have COPD

About 24 million folks have COPD in the US, but only about half have been diagnosed

In about 25 percent of the diagnosed cases the individual never smoked

Men are much more likely to have COPD than women

Senior citizens are much more likely to have COPD

The truth be told, I really don’t expect any significant findings or any major new medications to come into play while I am still here benefit from such. Sure it would be nice, it would be wonderful, but it isn’t going to happen. Yet I read each article, and I watch each segment on TV in hopes of hearing those magic words “We have a breakthrough on the COPD front.”

Until then, and as long as I can breathe without the support of a respirator I will do my best to talk it up and to help others deal with it in ways that are meaningful to them.

As for myself, I was diagnosed with COPD years ago. I went thru the progression of defined illnesses. First I had a touch of asthma, then it might be emphysema, then it was acute bronchitis or chronic bronchitis. The medical community finally decided on COPD as the umbrella that these respiratory diseases would collectively fall under. The bottom line is my lungs are screwed, and along with them me. But being screwed doesn’t mean you give up. It just means you fight harder.

In June 2012, I wrote “The most difficult aspect of dealing with COPD for me is when I gasp for breath. For no apparent reason, I lose my ability to breathe and I gasp. Sometimes in only lasts for a second or 2, other times 3 or 4. It is very very scary, and it fortifies my feeling of helplessness. Thoughts of, is this how it will end when the time comes, go thru my mind…..” Nothing has happened since last June to make this any less scary, nothing has happened that changes the outlook, yet I continue to fight.

COPD braces you from a multitude of directions. It attacks you physically, mentally, emotionally, economically and, it sometimes strips away your will. But what I have found is that folks find a way to cope. Folks find a way to fight, and folks are quite resourceful in their efforts. We all have periods of good and bad, we have period of doubt, but we continue to fight.

In my mind it is the tackling the physical aspects of COPD is the easiest. Because no matter how slight the exercise program might be you’re exercising, and that is the important part. To keep the body going, to keep moving, that is an important key. I recently completed 12 weeks of physical therapy and breathing exercises. The change is significant, and I am so much physically stronger than I was 12 weeks ago. But I don’t breathe easier, I don’t have more wind, I still gasp for breath after the slightest exertion. But thru the breathing exercises I can sometimes better control getting totally winded. Physical therapy has had such an impact on my strength, that by itself, is enough positive reinforcement to keep me working out. And as my strength increases my breathing practices are continually reinforced as well. That’s a good thing.

Is it enormously difficult to fight off the mental and emotional challenges presented by COPD. To stay upbeat, to maintain a positive attitude, to find reasons for joy on a daily basis, to find the strength to not lie to your family and friends on how you feel (both physically and mentally), and to find ways to gracefully accept your limitations, are just some of the challenges one faces daily. Each of us that suffer from these issues and challenges, deal with them differently, yet we all find ways.

I want to continue talking of the emotional impact of COPD and some of my fears these emotions bring. Every time I get a tickle in my nose or throat I wonder if it’s the beginning of a cold or the flu. Because if it is, then I have to worry about when will it become pneumonia or worst an exacerbation, which means at the minimum a week in the hospital, followed by from 4 to 6 weeks of intense IV drug treatments. I wonder if I am going to have the energy meet expected and unexpected events. I worry if I will have the energy to meet the commitments I make to friends and family. I worry about how much the medicine costs to keep me remotely stable. Because I have been told that I am un-operatable, I fear that I may have other health issues come into play that do require surgery, and how that play out. I don’t for a second believe that I am the only sufferer with these fears. And I am so fortunate, I have the means to handle most of them, but some of my friends in the discussion group don’t have a strong family circle to provide assistance, some don’t have the same resources I have, and many are further down the road than I am. So I am sure these are shared fears. But for every real fear, there are some not so rational fears, and those are much more difficult to focalize on and resolve.

Personally I accept and deal with these challenges better some days compared to others. And my strongest defense mechanism against the mental and emotional challenges has been through writing. I was brow beat into starting this blog, my wife had been after me for months and months, to start it, I don’t know what she hoped to gain, but I know that because of her constant nagging about it I have gained significantly. It provides me an outlet, it gives me a purpose, and it has allowed me to help others. And yes I have thanked her repeatedly. I also joined a COPD & Emphysema discussion group which I am an active member, to which I contribute on a regular basis, offering my thoughts and encouragement to those that need and seek it. And thru helping them in some small way I help myself in a large way.

Another mechanism I have available to me is comes from my health care provider. They have a group of health coaches, and they have been particularly helpful. The coaches are specialized to the needs of the individual. For instance after I had my bypass surgery, I had a cardio specialist call and talk to me about heart related issues, and treatments. Now I speak to a generalist and pulmonary coaches. These coaches will call at least once a month to just talk. They can’t and won’t prescribe or diagnose, but they and do find out how you’re doing, what new meds you might be using, and if they seem to be working. They can and do offer potential strategies, but for the most part they talk and allow you to get things off your chest. I for one have found that I am less likely to lie to my health coach about how I am feeling, both physically and mentally than any friend or relative. And yes I lie to my family and friends, because I don’t want to add to their burden of caring for or about me. I don’t want any additional pity. I don’t know how prevalent lying is among folks with COPD, and maybe lying is too strong a word, a more appropriate term would be the omission of all facts. Some of us want to keep some secrets, some of us want others to think we are doing better than we are, some of us realize that these small omissions don’t hurt as much as the truth will. And maybe these omissions are defense mechanisms allowing us to lie to ourselves. You the reader need to make that determination.

One of my health coaches is responsible for my involvement with the COPD & Emphysema Discussion Group, via DailyStrength.org. This has been a saving grace for me. There must be 1500 members of this particular discussion group, but only 45 or so are active. Yet from these 45 I have gained insight, strength, encouragement, a laugh or 5, knowledge, and emotional support. 98 percent of the group is made up folks that suffer from COPD, the other 2 percent are folks that are spouses or children of COPD sufferers. And even the non-regularly participating members of the group jump in from time to time with useful information or insight.

I don’t know if I added to your knowledge of COPD, but I do thank you for taking the time to read this. COPD is a killer pure and simple. If you feel you have pulmonary issues please see your doctor. Earlier treatment won’t stop it, but it will allow you the opportunity to fight it better.

Please take care, as always your comments and suggestions are welcome. Take care, Bill

 
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Posted by on January 17, 2013 in Observations, Ramblings

 

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How I Feel Today 01.04.13…..

As quickly as one year ends another begins.  Since I last reported (12.31.12) little has changed.  I am still looking at the flowers from the correct direction.  At the beginning of this week I completed my last Pulmonary Rehab and graduated with flying colors. An aspect of the rehab that I don’t think I have spent much time on is my oxygen level during exercise.  When I first started Pulmonary Rehab, no matter what exercise or duration of exercise I was performing, my oxygen level would drop below 90 percent on a very regular basis, sometimes it got as low as 82 percent, but over the last month, I don’t remember it dropping below that level once.  Yes I still gasp for air, but clearly (to me) the rehab has helped me retain oxygen in my  blood.  This change I completely give credit to the impact the Pulmonary Rehab has had.  Today I started my maintenance program. I choose using the hospital pulmonary rehab center, because it has nurses and the cost per session.  Having nurses there as you work out is a good thing, having it not cost a fortune is better.  My costs are $40 for 8 sessions, or 5 dollars a session, heck I spend more than that at McDonalds.   Hopefully I will do more workouts than visits to McDonalds.  In a separate post I shared my New Year’s Resolution, it was simple.  Just be here on 12/31/13 to make one for the year 2014.

In the brief period between Monday and Friday my health has not changed.  I still am running at a solid 3 level and peaking at 3.25 to 3.5 during the day.  As I stated above I have started my maintenance program.  But it isn’t about maintenance.  It’s about continuing the process and improving as you do so.  Today was one of the hardest to date because I didn’t have anyone monitoring me.  I went thru my paces, and when the day was done, I was slightly ahead on all prior levels.  It is quite apparent to me that I need to work on the upper body exercises, and weights.  My legs are still relatively strong and the exercises and weight work with them is much easier that upper body work.  I am setting the bar higher, reaching for whatever the maximum is so I had to work harder.  Recovery time between exercises has also increased due to the increased effort.  This wasn’t totally unexpected, but a bit shocking just the same.  Improving should be and is the goal, but everyone has good and bad days, realizing this will allow me to not meet my goals every time, yet meet them for the overall.  I also understand that I at some point I will real my ultimate level then the goal changes to maintaining that level.

Getting off my dead butt and actually completing the Pulmonary Rehab, has been great mental and physical victory.  I had the talk down pat, and I could use all the right words, it was kinda like one of the million times I tried to quit smoking.  But actually getting out there and doing it, WOW that was the great part, and that gives me the mental courage to continue.

Next will be to rehab my belly, I haven’t developed the courage (and really the desire) yet to do the simple exercise of pushing away from the table.  Maybe later in the year I will start that significant effort.

As always your comments welcomed are encouraged – take care, Bill

 
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Posted by on January 4, 2013 in How I feel on a particular day, Ramblings

 

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