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How I Feel for the Week Ending 8.22.14

For the week ending 08.22.14, it still quiet time, my jukebox is back, and when I sit in my office it is blasting, but I am using my wife’s computer because I really hate the keyboard on the laptop. I will continue to use her computer until I get WORD installed on the new computer. 

Since last week the coughing seems to have lessened, as I sit here and coughing up fur ball (that’s a joke folks). The mucus which I am coughing is school paste white, so I don’t believe there is anything further or unusual going on in my lungs.  If you remember last week I thought I was going thru a minor exacerbation and during my appointment with Hospice today, my nurse seemed to confirm that suspicion.  The heat and humidity is taking its toll, but I am not the only one who is suffering.  Normal healthy people are also bending to the will of the continuing summer here in Florida and elsewhere across the country.  To avoid the worst of it I stay inside in the A/C, as I suggest you do as well. 

The Hospice nurse also noted and said she would advise the doctor of my not using the Trazodone any longer for the reasons stated last week.  She went on to say that sometimes Trazodone is ineffective as a sleeping aid.  So I will be staying with the Ambien for the time being.

During today’s appointment I was also going to address how I felt I had been blown off last week, besides forgetting to address it, I believe last week was the aberration which happened as a result of changing personal and a recent “right-sizing” at my Hospice.  I am going to keep my mouth shut, because in retrospect I believe I had a burr up my butt last week.

On Monday I meet with Doc Head, it was a productive meeting and the hour when quickly. I did show her the gift I was given in July and she was extremely impressed.  As I am every time I look at it, and because it sits in front of my monitor I see it often.  I was also supposed to see Doc Lungs Monday, but that didn’t happen, I had too many spoons in the bowl, and I didn’t want the 2:20 appointment because he is generally running behind by that point in the day.  So I will see him this coming Monday (I will also have my INR checked). This change will put off the conversation regarding my rapid respirations, until next Monday.  I did speak briefly with the Hospice nurse regarding this but we didn’t come to any conclusions nor did we agree to any change in current actions. Being honest I have been advised there are other stronger drugs available that can alleviate this, but they come with a price (like; driving while using them), so I will be staying with the morphine for the time being, because in my mind it is the lessor of the evils.

All things considered I am going to rate this week a 2.50 physically, and a 9 on the mental meter.  If it were not for the heat and humidity and the SOB that causes this week could have been a 2.75.   

Let’s get the vitals out-of-the-way for the week ending 08/22/14

  • INR = 2.6 taken 07/28/14 – next INR reading scheduled for 08.25.14

  • O2 level @ 2.5 LPM = 92 taken on 08/15/14

  • Peak Flow = 210 taken 08/21/14

  • BP = 118/80 taken 08/21/14

  • Heart rate = 103 taken 08/21/14

  • Temp = 99.0 taken 08/21/14

  • Weight = 258 taken 08/21/14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 08/22/14, moving now to the word of the week discussion aspect.  This week I want to spend a few of your minutes talking about “Mad.”  As usual I have gone to the internet for an “official” definition.  This weeks’ definition comes to us via Dictionary.com I am providing the link because the definition and explanation are so much longer than I anticipated so I will be using the Noun and verb component of the word. 

http://dictionary.reference.com/browse/mad

MAD – noun — an angry or ill-tempered period, mood, or spell.

MAD — verb — (used with object), madded, madding. Archaic. to make mad.

MAD – verb — (used without object), madded, madding. Archaic. to be, become, or act mad.

MAD — Idioms — mad as a hatter, completely insane.

A few weeks ago I wrote about angry and anger, those 2 words caused a ton of wonderful thought-provoking comments, dialog and a lot of discussions between myself and blog buddies, as well as, my friends on Daily Strength.  Much more than I expected, which caused me to think that I may have been looking to write about being mad almost as much as I wanted to write about being angry.  Because there is a significant difference between being angry and being mad, but are many times they can be interchangeable.

Mad is unique to the individual, we all get mad, we get mad at all manner of things, incidents, events, individuals, poor driving, spouses, children and the list goes on into infinity.  But what many of the terminally ill people I have shared comments/discussions/thoughts with find is that rarely are we mad about dying. We have reached that point where dying isn’t the issue, it’s a result.  Yes we get emotional about dying, none of us wants to die, but dying isn’t the root problem.  The terminally ill have the same problems/issues as a healthy individual, we all get mad when we see events that makes our blood boil, or see another politically charged commercial pointing out faults rather than offering solutions, or read about a child being abused, or how old folks are such easy prey to scam artists, and how the homeless are treated. We all get mad when we feel poorly treated, or misused, neglected, lied to, cheated on, robbed, accused of (fill in blank) or ignored and this list could go on forever as well. These emotions run deep to the soul of everyone, healthy or terminally ill. 

Our discussions have found that being terminally ill is the act blamed for a lot of the “mad” and angry going on between caregivers and patients, between spouses, between friends or any of the different possible combinations.  It’s a label we can all reach for to excuse “mad” behavior, saying if they weren’t dying then they wouldn’t be acting so mad.  The reality is that we could be mad for any or all of those listed above.  What then happens is that the root cause of the mad (whatever issue it maybe) is never resolved, it is sometimes casted aside only to flare up again and again, each time being deflected by saying “she’s mad because she is dying.”  Or he doesn’t understand because he is sick.  Being terminally ill is not an excuse or an alibi for being mad.  Discussions have led me to think that some, maybe many terminally ill folks just let the blame fall on “dying” because it is the easiest solution.  This way they don’t have to waste the time or energy clearing up why they are mad.  Allowing the “mad” to be tied to “terminally ill” allows both parties to get pass the problem without addressing the problem, and everyone moves on until the next time.  Conversely I have heard stories where the terminally ill were in fact a major PIA and carried their dying like a shield to deflect any reproach  Saying things like, I did it or felt this way because I am dying, and on and on.  It is a two-way street, that both sides try to travel with the least bit of friction.

This post isn’t about pointing fingers, it’s about opening eyes.  Being terminally ill or healthy doesn’t change one’s basic values, it doesn’t change one’s morals, it doesn’t change being right or wrong.  Being terminally ill is not an excuse for being an ass.    But being healthy doesn’t allow arguments to be shifted “X is only mad because she/he is dying.”  Arguments and mad have to be settled on their own merits and not because one of the parties in the argument is terminally ill. 

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

 

 

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How I Feel for the Week Ending 08.15.14

For the week ending 08/15/14, it will quiet time, my jute box is broken, so I will be doing this report solo.  My desktop is on it last breath and the new one is sitting on my desk, I am just waiting for my new Office Professional Suite to arrive, and my IPod moved to the new computer and it will be full speed ahead.  But other than having computer and music woes I am doing I pretty good.

I have had a bad week for coughing, in retrospect I believe I had and got away with having very mild exacerbation of my COPD I will be talking to Doc Lungs Monday and get his read, hell he might say I just had a cold.  My energy level is low, and that damn SOB with be the death of me LOL. As many of you know I spend a considerable amount of time complaining about my not sleeping worth a damn.  My internist at Hospice changed the medication, had me stop taking the Ambien and start taking Trazodone.  The 1st night under this drug, I kinda laid there like a log. Not sleeping but not awake. The 2nd night I slept slightly better than day 1. The 3rd and 4th nights I had my Alpazolam about an hour before the Trazodone and that put me to sleep a bit better, but not as good as it should. The next night as I prepared for bed I ended taking the Alpazolam and Trazodone as well as my bedtime morphine and I slept real good.  But that was way to much medication before bed.  So I have stopped taking the Trazodone and gone back to the Ambien, I may not sleep great but I don’t run the risk of not waking up.

When I see Hospice again I this will be part of the main conversation.  Speaking of Hospice, the organization I am being treated thru is just like any other company or organization.  When change happens, it sinks to the lowest of levels.  There has been a reduction of staff, and clearly they have not worked all the kinks out of how to perform the necessary services with fewer people, I was called on Thursday afternoon about 30 prior to my appointment and the new nurse asked me how I was doing, to which I honestly replied I was doing okay.  To which she immediately responded then she guessed it wouldn’t be necessary for her to stop in this week, but if I needed anything to give the office a call and they would take care of it, then she promptly hung up.  It’s a good thing that I honestly felt okay because being blown off like that could be hazardous to ones’ health.  Then I thought of the more timid folks who say they feel okay or fine or good, when they in fact don’t.  This too will be addressed next week with the Sapphire Team Leader.

I think my most telling symptom of having COPD today is the higher than normal respiration per minute.  I believe that a normal healthy person breaths at the rate of 12 to 20 breaths per minute  I am consistently breathing at a rate that exceeds 20 breaths a minute, sometimes as much as 25 to 27 per minute.  The increased respirations per minute have an impact on other components of the body especially the heart.  I will be seeing my heart doctor in a couple of months and maybe we can work out a plan to slow me down.   I am also seeing Doc Head Monday and Doc Lungs Monday afternoon, I will be addressing the issue of rapid respirations Monday, so Monday is going to be CO-Pay day LOL.

All things considered I am going to rate this week a 2.50 physically, and an 8 on the mental meter.  Going back to talk about Trazodone for a minute, it’s prime purpose is to treat depression, aiding one’s’ ability to sleep is a “side-affect” of the drug. Personally I don’t feel depressed maybe I should but I don’t, and clearly the component of the side-affect didn’t work for me.

Let’s get the vitals out-of-the-way for the week ending 08/15/14

  • INR = 2.6 taken 07/28/14 – next INR reading scheduled for 05.12.14
  • O2 level @ 2.5 LPM = 93 taken on 08/15/14
  • Peak Flow = 210 taken 08/15/14
  • BP = 142/73 taken 08/14/14
  • Heart rate = 102 taken 08/14/14
  • Temp = 98.7 taken 08/14/14
  • Weight = 260. taken 08/16/14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 08/15/14, moving now to the word of the week discussion aspect.  This week I want to spend a few of your minutes talking about “Medicine” as the word for the week.  As usual I have gone to the internet for an “official” definition.  This weeks’ definition comes to us via Yahoo.  I am not providing the link because I have copied the complete definition into the post.

Medicine – noun  — 1 — The science and art of diagnosing and treating disease or injury and maintaining health.  2 — The branch of this science encompassing treatment by drugs, diet, exercise, and other non-surgical means.   3 — The practice of medicine.  4 — A substance, especially a drug, used to treat the signs and symptoms of a disease, condition, or injury. 5 — Something that serves as a remedy or corrective. medicine for rebuilding the economy; measures that were harsh medicine. 6 — Shamanistic practices or beliefs, especially among Native Americans.  7 — Something, such as a ritual practice or sacred object, believed to control natural or supernatural powers or serve as a preventive or remedy.

The word medicine comes to play this week because of my bout with the drug Trazodone.  I complained that I wasn’t sleeping and was given an anti-depressant to solve the problem.  The problem still exists.  While I am a diehard do as the doctor says kinda guy, I hardly ever question the medicines I am given to help with my battle against COPD, this doesn’t mean I have given up my rights to know what I am taking, the impact (both good and bad) or the and potential side effects.  Each prescription I get comes with an information filled document, whether it’s the 1st time taking the drug or the 100th refill.  That document is always provided and extremely important to both you and me, especially if you have more than one pharmacy filling prescriptions.  You really need to read and familiarize yourself on what each of your medicines are for, potential side effects, restrictions, and when and how to take.  Things like; must we snack prior, is a sip of water enough or should we drink an entire glass. All of this information is in our hand, should we need more information regarding a drug we can follow it onto the internet and do more research. I will be the 1st to admit that in the past I most likely just dropped that info sheet into the circular file, and just started taking whatever med I was prescribed.  But you can teach an old dog new tricks, and my interest is more keen now than ever before.  So yes I do read the info sheets on my meds. We have to be our own advocates when it comes to the medicines we need to take.  If you have difficulty understanding the document I know my pharmacist will explain to me in terms I understand, and I am 99 pct sure yours will be more than happy to help you understand.

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

PS: My editor is working on a COPD video project. This will be a series of helpful how-to videos with tips for COPD patients such as how to quit smoking and how to get a good night’s sleep.  I was asked if I knew anyone in the DC or close by that would want to participate.  Someone with COPD close to D.C. who would be willing to speak on camera about these tips and their experiences? I told her I would ask my readers.  So if anyone who lives in the DC area that would be interested n taking part contact me, I will forward your name on.  Thanks Bill

 

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Touting My Own Horn

A few weeks ago I went to considerable effort to let everyone know that my blog www.DealingwithCOPD.wordpress.com had been recognized by Healthline.com as one of “The Best COPD Blogs of the Year.”  I would not have known my blog had received this recognition had it not been for a friend at the Daily Strength Emphysema & COPD Support Group. I was extremely honored and had to brag about the recognition and you’ll got it pushed on you LOL. 

For those that know me and are used to me, know I stumbled pretty bad at accepting praise.  For the first year or so if someone said something nice about my BLOG I went to pretty big lengths to down play whatever kind words that were said.  Then early this year I had the light bulb turned on in my head.  Huntmode had her fingers on the switch and turned it to the on position. In that moment of clarity I came to realize how I had been insulting the folks that had been going out of their way to express their appreciation for my efforts.  I can’t thank them enough for their patience and support, and forgiving my knuckle-headness.

Now that I have completed my normally long opening remarks on to the meat of the matter.  Apparently my friend over at DS wasn’t the only person looking at that list of best blogs.  One of the web producers for remedyhealthmedia.com who is also an editor for HealthCentral found my BLOG because of the recognition it got as being one of the best COPD Blogs.  Then I got the below from that editor.

“Hi Bill, I’m an editor for HealthCentral.com looking for COPD bloggers. I came across your wonderful blog and would love to talk with you about writing for our site. If you’re interested, please email me at XXXXXXXXX@remedyhealthmedia.com. I hope to hear from you soon.”

I did in fact contact the editor, and we talked a couple of times.  I explained that I wasn’t a doctor or nurse or someone with any medical knowledge.  I was assured they weren’t looking to me for any medical information.  They wanted a blogger that wrote from the personal perspective, without drama or non-sense, and with a positive mental attitude, which pretty much sums up my blog.

They have an expectation that I will provide at least one acceptable post a month, but would gladly accept 2 posts per month.  I will write about topics that both I and the editor agree too, but the kicker is that the posts can’t be longer than 700 words no few than 500 (or there abouts).  As you’ll know I can hardly say hello in less than 700 words. So I am sure the 500 word minimum will be met without issue.

After careful consideration I have agreed to the terms as offered by HealthCentral, and I am completing the required paperwork.  I have no idea when or what the 1st post will be, we haven’t got that far. To top it off, smiling, I will be compensated for each accepted post.

So folks I am tooting my own horn, but please understand without you, your friendship, your support, your help, and your praise I wouldn’t be anywhere near this. Thank you, thank you so very much. 

If you have any questions please feel free to ask.  Concerns and comments are always appreciated. Take care, Bill

BTW this post is a record short post for me it is only 564 words.

 
38 Comments

Posted by on August 9, 2014 in Observations, Ramblings, Treasure Box Stories

 

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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 07.18.14…

Here in the Tampa area of Florida (where I live) we have had about 12 inches of rain since the beginning of the month.  Some parts of the area have only had 6 or 7 inches where others as much as 18 inches.  Trust me the normal water restrictions are not being applied.  But all that rain leaves a humidity trail behind it, and as any of my respiratory friends knows, that makes breathing that much more difficult.  I say this to continue to advise my non-respiratory friends of the perils that weather can cause, and likewise just how important air conditioning is to us.

My IVIG treatment was an adventure this week.  As most of you are aware I had a Mediport installed late last year.  Smiling, the concept behind this is one stick and you’re done.  The nurse can immediately begin a blood draw or start infusing medicines.  But lucky me, there has got to be an issue with the installation of my port.  Rarely is the port accessed on the first attempt, normally it takes 2 tries before success.  Well yesterday I was quite fortunate.  It took 4 attempts before the port was successfully accessed.  Each attempt was made by a different nurse, the last nurse to do so, was visiting the Infusion Center to install a Pic Line. As a matter of fact she had installed Pic Lines in me in the past, and she‘s a “pro.” She successfully accessed the port in about 15 seconds, after the area was “sanitized” for the 4th time.  This put the start of my infusion an hour behind, and it was time I never made up.  But the nurses were good to me, and to make up for having to stick me so many times gave me a Firehouse sub for lunch.  

I only have one medical appointment this coming week and that is with Doc Head.  I am sure that will be productive.

Last week I spoke of how my use of specific medicines was one of the gauges I use to determine how I feel for a given week. Another gauge I use is how much time it takes me to prepare for a day.  That being going thru all the motions one has to prepare for a day, showering, shaving, brushing teeth, getting dressed, you get the picture. I am beginning to notice subtle changes in the process.  I have to hold onto the grab bar in the shower for longer periods and more often, it is a little more difficult to shave because I do remove the supplemental oxygen when I shave, and I can’t just go from shaving to brushing teeth, I need to stop and gather myself before proceeding. Even putting on cloths requires a break to gather myself.  Smiling, advanced planning is mandatory, I am no longer as quick as I was.  These events speak volumes on the progression of the disease.  It begins as a glacier, but I am afraid the end will be like an avalanche.  This just another factor I use when I give myself a rating for the week.  Considering all the information 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.

So as a wrap up we are ranking the week an overall 2.5, but the attitude is still great, and I look forward to seeing the flowers from the right direction for some time.  So we can move on to the vital for the week ending 07.18.14

 

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

  • O2 level @ 2.5 LPM = 95 taken 7.18.14

  • Peak Flow = 210 taken 7.18.14

  • BP = 106/66 taken 7.17.14

  • Heart rate = 98 taken 7.17.14

  • Temp = 98.5 taken 07.18.14

  • Weight = 267 taken 07.18.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 07.18.14, moving now to the word of the week discussion aspect. This week I have chosen the statement “how do I feel” as the word of the week. I haven’t even done a dictionary search for my phrase because I am wise enough to know it’s not there, so I will be speaking off the cuff today.

As some of you may remember I have spent a considerable amount of time pissing and moaning or bitching or just being obnoxious about, Doctors in particular and some nurses, asking me “how I feel.” I did most of this complaining when I was tied to a hospital bed.  I have even used the snappy response “You’re the one with the million dollar education, you tell me.” Folks I want you to know I have totally stopped that, I was wrong, gosh have I been wrong.  The doctors have a million tests that tell them how the body is, where it is broken, what is infected, how infected is it, is there more than one infection attacking the patient, has the patient more than one broken bone, and on and on and on.  All of these tests tell them, that this drug may work or that drug isn’t working.  It tells them how the bones in your body are mending. The x-rays, the blood tests, the stress tests, and all the other tests a patient is subjected to speak volumes to the health and maintenance of the body.  It helps them define courses of treatment, it helps to define what additional tests need to be given and results studied.  After they have explored all the different avenues it gives them a clear indication as to the direction they need to get to ensure your body is healthy.  But to my knowledge there isn’t a single test they can administer, that tells them “How do you feel.” And this my friends is the single most important question they can ask.  And my flippant response was not justified. Actually it was kinda mean-spirited.

 “Stupid is as stupid does”, from Forrest Gump pretty much sums up my former attitude.  Some may wonder what brought on this change of heart.  It really is quite simple I think.  Each week the Hospice nurse comes and takes my vitals, makes sure I don’t need any medicines, and does a general health assessment.  Part of that assessment is that simple question “How do I feel today?” or sometimes they ask “What do you miss today?” About 3 weeks ago I had a light bulb kinda moment. The light came on, it was so simple, all they are looking for is to see if my mental health is a good or bad as my physical health.  If I answer in a positive manner they get the input that my mental health was in a good place, it also could help them determine if their medical approach correct.  Also if my mental attitude is positive, even if my body is not responding to the medical treatment, it tells the doctors that while the treatment may need to be changed my attitude helps to keep me in the game.   Conversely if I tell them honestly that I feel like crap, and help them define why, they can immediately go back to the tests and begin the search, looking for that one thing they may have missed, or do they need to change medicines, or do I need counselling, or is it a combination of things that is needed.  That question and an honest response can make a significant difference in one’s treatment.  I truly believe that my attitude has played just as important role in my continued fight against my disease as the medicines I have been given (smiling maybe the medicines have a slight edge).  But attitude can make a significant difference.

All of this is being said so you don’t make the same dumbass remark I made.  I can’t stress how important it’s that you are completely honest with your doctor, giving him/her every opportunity to help you.  Even if you have a terminal disease it is still just as important, for as long as you’re trying, you give your doctor the opportunity make you as comfortable as possible for as long as possible. 

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 — ps no music was played during the creation of this document, I was busy watching the “Open” actually listening to it and watching replays of shots I missed.

 
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Posted by on July 18, 2014 in How I feel on a particular day

 

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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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How I Feel for the Week Ending 07.05.14…   

Folks, I hope you successfully survived the three “F”s food, fireworks, and fun that come in abundance on July 4th.  As for me, it was as quiet as it could be.  The neighborhood fireworks started around 3:30pm reached their most intense time around 9:30pm to 10:30pm with some of the longer fuses going off from time to time all night and still this morning. First sidebar, the music is pure random today, we started with Aretha Franklin, followed by George Thorogood Reba McEntire,  and now Brooks and Dunn, so it’s sound like we have the potential for a Country Music Morning. It is approximately 1015am my brother-in-law just left after a 2 day visit, which I thought was going to be longer.  He’s a good guy and we have been friends as long as I have been married to his sister.  So clearly I am getting a late start but I promise this will be in your inbox no later than tomorrow afternoon, it has been miserably hot and humid this week, with that being broken up yesterday. The pool temperature has climbed to over 90, so it isn’t nearly as refreshing as anyone would like.  If the pool vacuum worked a touch better I would have a 9,000 gallon hot tub. LOL LOL.  But I know you’re not reading this for the weather and pool report.  The heat and humidity have played hell with me this past week, and my scheduling seemed to have me out and about during the worse part of the day, so physically I have been drained all week.  Of course coming with that is a harsher SOB.  Still folks all things considered I am going to give myself a score of 2.75 for the week.  No I don’t feel as good as I want, but I sure as hell don’t feel as bad as I could. So once again it is a 2.75 score for the week.  Last week I posted a length to an award this blog was given, and many folks contacted me and said the link didn’t work.  I am going to try one more time to make it available, because I am kinda proud of it.  

http://www.healthline.com/health-slideshow/best-copd-blogs 

Once there just scroll thru until you come to page 14 that would be me.

Last week I spoke of the need to pace myself, and as the summer wears on that is more and more evident.  I think this is something that each of us who suffer from a respiratory disease need to keep in mind. But this holds true and goes way beyond those who are ill. Smiling, take a look around you, see that cranky child, I rest my case. LOL.  This is what heat and humidity do to you, and ME, brings out our inner child. Sidebar; we have moved on to Jimi Hendrix, Garth Brooks and Freddy King, being on full random, well just be ready for surprises. So folks, I just wanted to remind you that you’re not invincible.

I had only 1 doctors’ appointment this week, that was to have my INR checked, and that was 2.3 well with the therapeutic range, the next check will not be until July 28, 2014. On the 3rd of July I hand my weekly visit with the Hospice nurse, that went well, and per normal that took about an hour. I still haven’t goofed on the nurse when she asked me “what do you miss” question, without thinking I give her an honest answer. Next week I see Doc Head on Monday and that’s it for the week. I have no, none, nada, appointments until the 16th; I may go into Doctor withdrawal, if am not careful. 

Let get the vitals out-of-the-way for the week ending 07.05.14 

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

  • O2 level @ 2.5 LPM = 95 taken 7.3.14

  • Peak Flow = 215 taken moments ago, 7.5.14

  • BP = 110/60 taken 7.3.14

  • Heart rate = 96 taken 7.3.14

  • Temp = 98.5 taken 07.3.14

  • Weight = 265 taken 07.5.14 

So ends the technical aspect of my “How I Feel This Week” report for the week ending 07.05.14, moving now to the word of the week discussion aspect. This week I have chosen forgive/forgiveness as the word of the week. As I normally do I will start with the dictionary definition for the word.  

http://dictionary.reference.com/browse/Forgive

http://dictionary.reference.com/browse/forgiveness

forgiveverb(used with object), for·gave, for·giv·en, for·giv·ing.  1. to grant pardon for or remission of (an offense, debt, etc.); absolve.  2. to give up all claim on account of; remit (a debt, obligation, etc.).  3 to grant pardon to (a person). 4. to cease to feel resentment against: to forgive one’s enemies.  5. to cancel an indebtedness or liability of: to forgive the interest owed on a loan.

forgivenessnoun 1. act of forgiving; state of being forgiven. 2. disposition or willingness to forgive.

Two weeks ago I spoke at length about anger, and how one needed to avoid at all costs saying those things that can’t be unsaid. To avoid saying things that “sorry” can’t fix.  Having been that angry at times during my life, and having someone be that angry at me, I could speak from experience, and I suspect that many of you have said things or had things said to you that clearly would have been best served not being said at all.  In  my earlier post I had concluded that anger came as a result of really not thinking, but verbally exploding.

This week we are going in the other direction.  We are going to discuss the act of forgiving.  As rapidly as angry comes upon a person, forgiveness seems to take forever and a week.  The words those terrible words dig deeply, and they fester, they rattle around, and they don’t fucking go away.  Sidebar; I just went from AC/DC to Lewis Black to Sarah McLachlan to Stone Temple Pilots, random play makes for strange bedfellows. In time the pain begins to lessen but it rears its ugly head at the most unexpected moments.  Your brain flashes like a strike of lightening, and there it is again that unrelenting anger, and there you are again mad as hell.  It’s because forgiveness has not started, you think you have forgiven the person, and 99 pct of the time the actions are long gone, but a look, a grunt, a condescending smile, can cause it to rush back.  I had always thought that forgiveness was a natural trait, it just happened, but I have been so wrong.  You really have to work at forgiving; the action of forgiveness seems to be multi-step.  And through it all the individual responsible for the anger has to help you forgive, and even more importantly you have to allow them to help you forgive.  You have to stop harboring the thoughts that angered you originally.  You as an individual have to make a conscious effort to forgive, but the very first step is getting over it.  The definition above for “forgive” especially number 4, really seems to be the key.  For forgiveness to begin you as an individual must “…cease to feel resentment against.”  Sometimes this takes much longer than you expect or anticipate.  And this is by no means perfect. But it is a place to start.  The definitions for “forgiveness” really seem to define what one must go thru to forgive.  The second definition “disposition or willingness” means a real action has to be taken on your part.  Unlike how naïve I have been, thinking forgiveness is a natural event; in reality it only becomes natural thru a significant effort.  Smiling there is a life lesson here someplace.  It would be apt but appropriate to say practice makes perfect when it comes to forgiveness.

I am also saying that those of us with a terminal disease really need to work on these skills now, because we really don’t have time to wait. Oh you healthy folks need to pay attention to this as well, just because you think you have more time, doesn’t make it so.  Besides enough of you healthy folks have said time and time again, “Oh, I could die tomorrow.” Well maybe you might, so pay attention. I for one can’t see any good that can come from taking a lot of anger to the grave with me.  Having no experience at dying (thankfully) it seem so counterproductive to harbor those feeling of rage, anger or angriness to the end, and it is my intent to be free of them to the best of my ability before I go.   I can’t help but feel it will make the transition to end of retirement easier for me and those I love and care for.

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

 

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How I Feel for the Week Ending 6.28.14…

Good morning folks, I hope you have had a pleasant week.  It is approximately 9:45am when I am starting this report so there is no logical reason why it won’t get completed and shared sometime today.  I know I am setting us up, because something will happen that prevents me from completing this today, as sure as the sun rose this morning something will happen.  Sidebar; the 1st 3 songs out of the box this morning have been Heart’s “Stairway to Heaven,” Vince Gill’s Don’t Let our Love Start Slipping Away,” and Depeche Mode’s “Personal Jesus,” talk about setting the mood. That’s what happens when the IPod is set on random.  Since last week’s report we have had no rain, and the day time humidature (a combination of heat and humidity) here in the Tampa area has run as high as 112 degrees with actual temperatures in the mid-90s, and trust me if you have respiratory issues that will take every ounce of energy you think you have and just squeeze every drop out of you.  Even with the heat and other considerations I am maintaining a constant 2.75 score for the week. 

Changes in my health that are more apparent during the heat, in that I tire faster and easier, and recovery takes a bit longer.  But I also feel that my diminishing health manifests itself many other ways as well.  Such things as taking a shower is not as easy as it once was and simple household tasks are not as simple as they once were.  For example emptying the dishwasher takes longer and sometimes requires a break to catch my breath, gathering the trash is a chore that requires more than one break, then getting the trash cans to the street is a job all to itself.  Dressing takes a bit longer, especially those mornings I put on my support stocking. The change is gradual, but you do notice it over time.  I am not surprised or offended by these changes it is part of the progression of the disease.  Smiling, these days I budget 20 mins or so to empty the dishwasher instead of the 8 to 12 mins it used to take. I also make other accommodations in my day-to-day life to manage the changes in my health. Also I don’t obligate myself to as many things during a day as I used too, all of these efforts enhances my quality of life without degrading my opinion of myself. Sidebar: I now have the Black Eyed Peas “I got a Feeling” slamming in my ears, and it is such a happy song, I have also some blues, and old rock, some of the bands include Linkin Park, Led Zeppelin, Halestorm, BB King, Lucinda Williams, so far it has been a good random kinda day.  

I had only 1 doctors’ appointment this week, and that was as always a productive conversation with Doc Head.  Also this week I have had my normal weekly checkup by Hospice. I am talkative, so these checkups can take 90 minutes, yesterdays was only about an hour.  When she asked the weekly “What do you miss” question, I kinda threw her a curve and said “Not Much,” with a follow-up that I was over not playing golf, and I was over not bowling, and I was doing pretty much everything else I wanted to do, only doing it a lot slower.  She kinda smiled, but got it.  Last week I suggested I was going to start giving off the wall answers to that question and that is still my intent, but yesterday I was off my game a bit, and wasn’t thinking as fast as necessary.  And when that happens the truth is the easiest thing to say. So I did.

Below is a link for a bit of recognition I got for this blog.  I have a call into the person that selected my blog, and should she ever call me back I will share with you the outcome of the conversation. I have emailed the link to a couple of folks and apparently it has worked fine, but my tests results have been iffy at best.  I do know if you use the link it takes you to an OOPS page, but if you just cut everything after blogs out and put in #14 it works.

http://www.healthline.com/health-slideshow/best-copd-blogs#14

Let get the vitals out-of-the-way for the week ending 06.28.14

  • INR = 3.0 taken 06.16.14 – next test will be 06.30.14 – but no change in meds

  • O2 level @ 2.5 LPM = 96 taken moments ago, 6.28.14

  • Peak Flow = 205 taken moments ago, 6.28.14

  • BP = 102/62 taken 06.27.14

  • Heart rate = 87 taken moments ago 6.27.14

  • Temp = 98.6 taken 06.27.14

  • Weight = 269 taken 06.27.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 06.28.14, moving now to the word of the week discussion aspect. This week I have chosen “Joy” 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/joy

joy — noun \ˈjȯi\ : a feeling of great happiness : a source or cause of great happiness : something or someone that gives joy to someone : success in doing, finding, or getting something 

Full Definition of JOY = 1 a :  the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires : delight b :  the expression or exhibition of such emotion :  gaiety 2 :  a state of happiness or felicity :  bliss 3 :  a source or cause of delight

For the rest of the definition please visit the link above.

Over the last few weeks I have spent this time talking about words like; denial, therapy, anger, Hospice, expectations, challenges and on and on.  Each of these words has touched someone somehow. Writing about them has been uplifting for me, as well as, unburdening.  I am not going to spend this time telling you that it will be a joy to die, what a big friggin lie that would be.  Hell if I had my way I would love to be 100+ and then the 170 year old Willard Scott could talk about me during the morning weather.  But just because one is dying doesn’t mean the joy has gone to. When asked how am I doing I sometime say I woke looking at the flowers from the correct direction.  Just saying each day starts off good, that I am here today is a pleasure.  You would be amazed at all the ways you can find a bit of joy each day.

o   During college football and basketball seasons each time Louisville wins I am joyful.

o   I am joyful when my daughter calls to talk to Me and not us.

o   I am joyful when a child looks at me and thinks I am Santa

o   I am joyful when Cari says she loves me

o   I am joyful when I see the flowers that Brenda’s blog is forever promoting

o   I am joyful when the good guy really kicks the bad guys’ ass during the shows I watch on TV

o   I am joyful went the pool temp is above 86 degrees

o   I find joy in all the wonderful blogs I subscribe to and comment on

o   I am joyful when I gather with my neighborhood family to play cards

o   I take great joy when any of my brothers or my sister calls to chat

o   I am joyful when the bottle of water in the frig is so cold it is almost ice

o   I take great joy in sharing the music I listen to as I create these posts

o   I am super joyful when it only costs 500 instead of a 1000 to fix Big Red

o   I am joyful that I make my wife smile and giggle

o   I am joyful and happy when I go to church and actually get it

o   I am joyful that I have good doctors doing the best they can for me under the worse circumstances

o   I am joyful that I can afford the health care necessary to keep me around as long as possible

o   I am joyful when I see any little person smile and giggle uncontrollable

o   I am joyful when the good guy wins

My point is simple we all have so many things to be joyful about.  Dying doesn’t take these joys away. If anything, dying makes us appreciate them even more, making each of them special.   I came up with this list of things I am joyful about in a matter of moments, it took no special effort on my part, and I know YOU could find just as many things.  The great thing about joy is that we don’t have to be sick to enjoy it, nor does being healthy make your joy better. 

Joy is what you make of it, I have decided to make the most of the joys I have each day.  Smiling, another good thing about joy is that each day presents new reasons to be joyful. 

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

 
 

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How I Feel for the Week Ending 6.20.14…

The modified title to this is “for the week ending 6.21.”  I had absolutely no chance to start my weekly report until this morning I was being grandpa 24/7 for the last three and half days.  If I appear to be a touch more stupid than usual that is the direct impact of an overdose of the Disney Channel.  Speaking of the Disney Channel, if we want the terrorist to willingly give up significant information, forget waterboarding, just tie them to a couch with a 9-year-old and the Disney Channel, I doubt if even the most hardened of terrorists could last more than 30 hours.  It is just a suggestion.  Anyway moving on to the weekly report, BTW we have had 8 inches of rain at my house over the last 6 days, and during those same 6 days half the time were as advertised beautiful Florida days. Today our music selections begin with “Grind” by Alice in Chains; I suspect this is going to be a mixed bag kinda of day music wise. I am maintaining a constant 2.75 score for the week.  Some days were as high as 2.9 others as low as 2.2 but the week was a solid 2.75.

It was a slow week for grilling, so I had no smoke issues.  It is quite surprising how this weekly report has grown to include a weekly weather report and cooking show. LOL But what is even more strange is that both the weather and cooking do have an impact on my overall health.  I am equally sure it has an impact on yours but you just notice it less than I do.

Monday and Tuesday were important Doctor appointment days.  On Monday I had my annual breathing test.  There is no easy way to say it, lung function has dropped my FEV1 is 31 percent (FEV1 = the amount of air which can be forcibly exhaled from the lung in the first second of a forced exhalation. Measuring FEV1 is done through spirometry testing which helps your doctor determine your lung function.)  The little chart here kinda explains it best.

  • FEV1 greater 80% of predicted= normal

  • FEV1 60% to 79% of predicted = Mild obstruction

  • FEV1 40% to 59% of predicted = Moderate obstruction

  • FEV1 less than 40% of predicted = Severe obstruction

This is down from 38 percent from last year. When I do the math it appears I have lost about 20 percent of “my” capacity in the last year.  Smiling it further means I just have to ensure I keep my ass out of the hospital. LOL.  Having said that I did knock on wood.  So that was Monday.

On Tuesday I had my monthly IVIG treatment that is the 5 hour infusion I get monthly which supports and jacks up my immune system.  This treatment continues to work and keeps my immune system functioning in the low normal range, which before I started this treatment 2 years ago was off the chart low.  During my infusion I took a meeting with Doc Infectious (actually my 3 month follow-up), which was little more than a glad hand meeting.  He introduced me to young man who was interning.  Doc Infectious gave him a 20 minute talk about my illness, his involvement in my treatment for the last 3 years, the lack of available drugs to fight the infections in my system, my awareness of the disease, and that I was one of a very few patients that there were standing orders for treatment should I show up after normal business hours complaining of symptoms, thus being able to avoid a trip to the ER.

On Thursday I had my normal in home appointment with my Hospice nurse.  Smiling, as she sets up her computer and connects to her portable server, the first question she asks each week is “What do you miss this week?”  My answers have all been honest with me generally saying I miss golf, bowling, or some other physical activity.  I know this is a psychological question to test my mental attitude, and my answer probably evaluated, charted and over analyzed.  So I think I am going to mess with the chart.  Maybe answer fried chicken one week, and rhubarb pie the next, maybe county roads, and such over the next few weeks, just to mess with them LOLSidebar: well just to let my friends in Canada know, I have heard a lot of Nickelback this morning, as well as, Linkin Park, Tom Petty, Led Zeppelin, Five Finger Death Punch, Vince Gill, and Travis Tritt so far this morning.  And it has only just begun.

Now for the broken record part of the weekly report, my general health remains approximately the same. The coughing is about the same, tiredness seems normal this week; SOB normal (which means all the time)  I normally bitch a bit about my sleeping issues and with sweet granddaughter here they are interrupted a little more than normal but that’s okay and kinda expected, even though she has slept her countless times, we tried something different this time and put her down in her room, well at 3 am she “was scared” and joined us, which meant at 315 I was kicked to the floor and ended up on the couch.  Problem solved the next night I was in the guest room LOL.  It all worked out.   But I did miss my naps LOL.

Let get the vitals out-of-the-way for the week ending 06.20.14

  • INR = 3.0 taken 06.16.14 – next test will be 06.30.14 – but no change in meds

  • O2 level @ 2.5 LPM = 95 taken moments ago, I have been instructed by Doc Lungs to set my supplement oxygen to 3 LPM when I am out and about.

  • Peak Flow = 220 taken moments ago

  • BP = 98/61 taken 06.19.14

  • Heart rate = 94 taken moments ago

  • Temp = 98.2 taken 06.17.14

  • Weight = 270 taken 06.17.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 06.20.14, moving now to the word of the week discussion aspect. This week I have chosen “Anger” as the word of the week. As I normally do I will start with the dictionary definition for the word.  But lucky you, you get to 2 definitions for the price of one, because Anger forces you to angry, so for full exposure excuse me I meant disclosure LOL you get angry as well.

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

an-ger – verb – to make (someone) angry

Full Definition of ANGER — transitive verb =   to make angry (he was angered by the decision) — intransitive verb =   to become angry

Examples of ANGER = 1) They were shocked and angered by the company’s arrogance. 2) He was angered to learn that he had been fired. 3) It angered me that she would say something like that. 4) He’s a gentle man who’s not easily angered.

First Known Use of ANGER = 13th century

Go to the link provided here if you want to see all Webster has to offer on angry.

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

Sidebar; we have been listening a to selection by Linkin Park “Burn it Down,” but we have also heard some Stone Temple Pilots, more Alice in Chains, more Nickelback, Depeche Mode, Shinedown, Seether and one of my favorite songs of all time by Gemini Syndrome “Stardust.”

Being ill is a constant emotional roller coaster, but when you’re ill you have a very real tendency to not fully realize the impact your illness has on others; be it loves or lovers, relatives, friends and even acquaintances. We touch so many folks in so many ways. But as humans we seem to find so many ways to under value the impact our lives have on others.  As I write this I realize I am quite guilty of this but, in my defense I am getting better.  This impact touches all of the emotions and I have chosen anger to talk about today.

Anger is a magical emotion, because you can talk to a thousand individuals and won’t find 2 that describe it the same, you won’t find 2 with the same hot buttons, and rarely do you find folks that will admit that what one person says or does has no impact at all, yet if another person does that same exact thing in the exact same manner, it make them so angry their rage is blind.  Expressing anger makes a person just plain stupid.  Just like how Love can make you just plain stupid, of all the emotions, these two have the most dynamic impact on one’s personality.  Anger makes you say things that have no truth in them at all; it makes you say things that you would never say at any other time (including being drunk).  Anger will make you say the most hateful of things that you can never completely take back. The sad thing about anger is the word sorry doesn’t always fix it.  I suspect some of you are wondering why is he yakking about anger and how does it relate to the terminally ill.  Soft smile, of course you know why, even if you won’t admit it.  Sometimes the terminally ill get angry for no particular reason at all, they mumble, they cuss, they stomp, and it is generally pointed at someone who is completely innocent, somewhat innocent, or not innocent at all. We will say things we never intend on saying, at the most inappropriate of times. Yet sometimes though we flare up and explode for a very definitive reason/s, or in response to the words or actions of others, which could be any of those I listed above.  But sometimes anger is the right response, and the words said are the right words.  It took the emotional outburst of anger to free the words, the actions.  I am not saying that this is good I am saying it might sometimes be right.

The point I believe I am trying to make is that if your terminally ill, or if you are the spouse, loved one, family member, friend, caregiver, of someone who is terminally ill, you more than likely have such an encounter.  Hell you can for that matter take the terminally ill out of the equation and it still applies.  Try and do the impossible, try to keep your head about you during your outburst or response to an outburst. Try your best to not say something that can’t be fixed with the word sorry.  None of us ever want to walk around going “damn, I wish I hadn’t said that, but I was so angry.”

I have looked at this, and read and reread and I am kinda comfortable with it, and kinda not comfortable.  The bottom line is for everyone, if you have a shred of reason left during a heated discussion, try not to say those things that can’t be taken back or fixed with the word sorry.  And it really matter not, if you’re sick, or terminally ill or healthy as a horse.  In anger try to say things that won’t bite you.

This has gone on way longer than it needed. As always if you have any questions, concerns, or comments please feel free to bring to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

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How I Feel for the Week Ending 6.13.14…

Smiling, just like last week I am starting my report around noon. It would appear that I am a creature of habit LOL LOL, which isn’t always a bad thing.  It has been a wet dreary day here in not so sunny Florida during the last 24 hours we have had close to 4 inches of rain. Today our music selections begin with “Bully” by Shinedown, to fully appreciate Shinedown you must listen at 7 or 8.   Staying with a recent trend I feel the week has been a 2.75, not quite as strong as last week’s 2.75, but not enough difference to drop it any lower.

Over the past week I have been extremely careful not to stand over the grill inhaling the wonderful aroma of burgers and marinated chicken cooking, with the smoke being provided by the 80/20 lean beef burgers.

Doctor appointment wise it has been a busy week.  I met with Doc Head Monday and it was as always a productive meeting. Then on Tuesday I met with the Head RN for the Hospice Team that manages my health.  I thought (and it had been implied) that this was the meeting to determine if I were progressing towards end of retirement in a timely enough manner to stay under Hospice. Well it wasn’t really that meeting; the Head Nurse is required to visit each patience within her teams’ care on a periodic basis.  Smiling “she had heard so much about me,” she felt it was time we met.  When will I learn to just shut the f…… up LOL?  All kidding aside it was a very through 1st meeting. She visited with me for over 90 minutes, very engaging (as I have found most of the Hospice folks) and when it was over I asked her if this was in fact the meeting to determine if I were still a candidate for Hospice care.  Her response was that while this had not been the official meeting for such a determination, it was clear that I would be staying with the program.  Sidebar, we have been listening to a variety of hard rock so far, including Van Halen, Stone Temple Pilots, more Shinedown, Nickelback (for my Canadian friends) and Puddle of Mudd. Finally on Thursday I had my normal weekly meeting with the Hospice, this appointment when as expected and all my vitals were drawn from it.

This, like last week and the week before, my general health remains approximately the same. The coughing is about the same, tiredness seems normal this week; SOB better than last week, but I am not standing over a grill LOL.  Sleeping soundly is an issue, but in fairness I have never been a good sleeper, it just seems like in recent months it has gotten more and more erratic, and I am finding I am napping more than ever before in my life, this morning after taking care of the morning rituals and folding the cloths, I looked out the window at the gray ugliness, so I laid down for a couple of hours. 

Let get the vitals out-of-the-way for the week ending 06.13.14

  • INR = 2.3 taken 05.19.14 – next test will be 06.16.14

  • O2 level @ 2.5 LPM = 93 taken moments ago,

  •  Peak Flow = 225 taken moments ago

  • BP = 102/62 taken 06.12.14

  • Heart rate = 107 taken moments ago

  • Temp = 98.6 taken 06.12.14

  • Weight = 267 taken 06.13.14 my weight has been all over the place in recent weeks up or down as much as 6 or 7 pounds any given week.  I check my weight at the same approximate time daily. I talked to the Hospice nurse about this, and one of the long-term impacts of the disease is weight lost, soft smile if you can’t breathe it is difficult to eat.  Ergo you diet a natural unnatural way.

So ends the technical aspect of my “How I Feel This Week” report for the week ending 06.13.14, moving now to the word of the week discussion aspect. This week I have chosen “Therapy” 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/therapy

ther·a·py  –  noun – the treatment of physical or mental illnesses

Full Definition of THERAPY :  therapeutic treatment especially of bodily, mental, or behavioral disorder

Examples of THERAPY

            1. He is undergoing cancer therapy.

            2. talking over my problem with you has been good therapy.

Origin of THERAPY

New Latin therapia, from Greek therapeia, from therapeuein

First Known Use: circa 1846

Before I started “therapy” I had no feeling about it one way or the other.  There was no negative stigma I ever associated with “therapy” my feelings were and still are simple; if you needed it you needed it.  Kinda like a pill, if you have to take it, take it.  But since I have been it I have found I have very real feelings about therapy.  I could never be a therapist; I would never want to be a therapist. I understand more than ever some folks are deeply troubled; some not so troubled, and still others that are a mixed bag.  My 1st experience with a therapist was an effort on my part to find out about the dying process, especially for a person such as myself who had a terminal disease that slowly killed you.  I had 2 sessions with that therapist, and I truly believed she answered my question within the 1st 20 minutes of our conversation.  Being honest I didn’t bond with her, and one of us had an agenda that didn’t seem to be in my interests.  But I did go back for a second session, same net result, but I left satisfied that I had the answer I sought.

Some 12 months or so after my initial experience, I was troubled, and again sought out therapy.  My Health Coach did the research and kinda sorta recommended Doc Head.  She wouldn’t and couldn’t push me towards a particular Doctor; she just laid out the info.  One of the single biggest aspects of the decision process was that Doc Head’s office was about 7 minutes away if I took my time.  Decision made, appointment made, and the rest is history.  I have been seeing Doc Head for over a year and not one moment has been wasted.  For those who have been following me for any length at all knows I am an open person, and will talk about anything.  But damn was I quick to open up to Doc Head.

I am not sitting here saying everyone needs a therapist, or that everyone needs therapy, but I am saying is that for those of us who do admit to a need, it is great experience.  To be able to vocalize thoughts, and not just let them spin around in your head is worth the price of admission.  To be able to say just about anything you want and not have someone judge you, to be as totally honest as you want and need (as long as you stay honest), to be able to talk about your pains, your disappointments, your needs, your wants, your desires and to be able to do so out loud, so not only does someone else hear them, but you hear those words, those thoughts, those needs, wants, and those desires aloud.  Trust me, they sound a lot different verbalized than they do rolling around in your head.  And as you verbalize there is someone 4 feet away asking you what makes you feel this way or that, they aren’t judging, yes they may be digging, but it has been my experience that sometimes you have to dig to get to an issue.  Smiling, sometimes Doc Head will just sit and knot her head, encouraging me to finish a thought, or come to a conclusion, or realize that what I am yapping about isn’t really the issue at all, but it could be the conversation starter that leads to the issue.  Also I have learned that not all issues are problems and that not all problems come from the issues you present. The best thing about therapy is it allows you to get things off your chest, but be warned sometimes the things you get off your chest find their own replacements.

Also there is joy to be found in therapy, it is the perfect place for me to brag, I love writing my blog. I love the thought that my words may have reached out and helped an individual, I can share stories about folks who have come to me and said “thank you” for this story, or this hambit of information, or how I helped them cope.  And when doing so I don’t need to feel modest, I don’t worry about sounding like a braggart, I even allow my head to swell with pride when I talk about the positive things my blog gives me, and the love I have for my  fellow bloggers.  I can and do talk of the pure joy it is receiving the wonderful positive feedback I have gotten.  Smiling and my therapist doesn’t even look like she is tired of hearing it LOL.

Of course you can say something stupid like your planning on taking someone out, but as soon as you do the Doc will drop a dime on you.  You can talk about a plan to commit suicide, again the Doctor will drop a dime on you and measures will be taken to prevent such actions.  There are laws that require a therapist to advise authorities if you’re planning such actions.  I am sure there are therapists that are trained specifically to deal with situations like these.

Okay I have bent your ear as long and as hard as I can for this post.  As always if you have any questions, concerns, or comments please feel free to bring to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

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Addendum to HIFftWE 06.06.14…

(HIFftWE = How I Feel for the Week ending)

From time to time I speak about my head and what my spirits are like or mentally how I am feeling.  The last time I really spent any time on it was 05.16.14 and this is what I said “Also you need to understand that I am doing the best I can to keep my head out of my weekly score.  If I were to grade my week mentally I would give it a solid 4.75 out of 5.  The head has been and continues to be great.  Sure there are hiccups, but even healthy folks have hiccups.”

I truly am not going to make it a habit of reporting my mental state during these reports, I admit it is an important component of my overall health, but I am so upbeat.  What I would end up doing a cut and paste each week cause I am too lazy to retype the same info week after week.  But sometimes things happen and your whole perspective changes.  If I were to rate my head this week I would easily score the week 6.5 out of 5.  I was given a very special gift this week. The numbers are just numbers, but the gift was so very special.  One I will cherish.  Oh, by the way, I am not even going to share what the gift is.  But trust me, it is wonderful.  

Folks, I hope you have a wonderful weekend.  Yes I will take questions, but don’t ask about the gift, because I will have to decline.  Take care, Be safe, Bill.

 

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How I Feel for the Week Ending 06.06.14…

Good morning folks, it is Friday around noon and I am in the middle of being stood up by the Maytag Repairman.  The original scheduled time was for between 8:30 and 9:30am, when 10am came and when I called the company and had the pleasure of chatting with a snotty receptionist who informed me I was wrong the appointment was scheduled for between 8am and Noon.  Well noon has come and gone, and rather than go ballistic, I thought I would start my weekly report which should be done and in your hands before SundayOn a musical note in the background we are listening to some Stonegarden, which I am sure well be just a few of the songs I report on today.  BTW I did see “A Million Ways to Die in the West,” I loved it; I would pay money to see it again to catch the parts I missed the 1st time thru. 

A fair evaluation of the week would be a solid 2.75.  The things that ail me continue to ail me.  SOB is an ass kicker, which I made worse yesterday standing over the grill cooking some great chicken, hotdogs and hamburgers.   The normal aspects of my life have changed little.  I am sure the progression of the disease continues no matter what I do, but if I stay out of the hospital or avoid an exacerbation, it doesn’t seem to progress as rapidly.  So for me it really is almost impossible to notice any significant decline from week to week.  I will go on to say that when the time comes that I can notice a significant change in my condition from week to week, that the end of retirement is just getting real close.  So be assured, I have noticed no real difference between last week and this week. 

Also last week I spoke of waking almost violently, and having to chill sometimes for as much as 30 or 40 minutes before trying to sleep again.  I spoke of how my wife dropped a dime on me to the Hospice, and that I was given additional bedtime medicine to help resolve that issue.  What I failed to disclose what that the medicine is.  So in an effort to maintain full disclosure I now take 0.25ml Morphine Sulfate orally at bedtime.  This has helped significantly, but has taken some getting used to.  The 1st couple days I took this medicine I felt like my butt was dragging all the next day.  Not so bad now. I had one doctor appointment this week, and that was with Doc Derm, I was given some lotion, and told to use twice a day, and some moisturizer, you know the drill. I am 64 played golf for over 40 years always drove with my left elbow out the window, after you abuse yourself you pay a price.  No fretting allowed!!!  There’s nothing going on here. The only other medical related item was picking up a new pair of glasses.  No hospice visit this week our schedules did not match up. Sidebar we have been listening to AC/DC, Eagles, Cream, Jimi Hendrix, Creed, Dixie Chicks, thru this portion of the report, sometimes I get caught up listening and not typing. This upcoming week I have appointments with Doc Head, and my 1st quarterly appointment with Hospice to determine if I remain eligible for Hospice care.

Just like last week, and it is still boring but my general health remains approximately the same from week to week. The coughing is about the same, tiredness seems normal this week; SOB seems no worse except when I was standing over the grill. 

Let get the vitals out-of-the-way for the week ending 06.06.14

  • INR = 2.3 taken 05.19.14 – next test most likely the will be 06.06.14

  • O2 level @ 2.5 LPM = 92 taken moments ago, and has been all over the place this last week, a couple of reading as high as 97, but several in the mid 80’s and one as low as 78 over the past week

  • Peak Flow = 275 taken moments ago, and that is as high as it’s been in weeks, generally I have a 225 – 240 range.  Must be a good day for sitting at my desk.

  • BP = 100/61 taken 05.29.14 – this was the last time BP was taken

  • Heart rate = 101 taken at this moment 101

  • Temp = 98.57 taken 06.05.14

  • Weight = 274 taken 06.06.14 – that was after the feast yesterday, I knew I had no business getting on that damn scale.

So ends the technical aspect of my “How I Feel This Week” report for the week ending 06.06.14, moving now to the word of the week discussion aspect. A very dear friend and someone I respect greatly did not buy in at all (or at least mostly not at all) on my discussion on acceptance.  She spoke to me briefly on denial, and why that worked for her.  So out of respect for her, I decided to speak of DENIAL for just a bit.  As always we will start with a definition of denial.  Our definition is taken from dictionary.com this week.

http://dictionary.reference.com/browse/denial

Denial – de·ni·al – noun 1. A refusal to agree or comply with a statement; contradiction. 2. The rejection of the truth of a proposition, doctrine, etc: a denial of God’s existence.  3. A negative reply; rejection of a request.  4. A refusal to acknowledge; renunciation; disavowal: a denial of one’s leader.  5. See also defense mechanism a psychological process by which painful truths are not admitted into an individual’s consciousness.  6. Abstinence; self-denial

The truth is a lot of folks are in denial. Some folks will stand on a stack of bibles and claim they aren’t ill, will claim their world is perfect, will assert that everything is 100 pct okay, and will do so right up to the very end. They hope thru their denial that it will in fact become reality.  Science, the preacher, the best friend, the spouse, and a teams of doctors and test results, can’t convince them of their situation.  Then at the end some have the “Oh, Shit!” moment. When the reality of their situation hits them dead in the face, some look back and some regret, others don’t, some second guess their choices and then show all manner of regret.  Still others try to cram months and years of preparation into days and weeks. Sometimes denial is done out of fear, that if you don’t accept it, it won’t happen.  I have a good friend who is in denial to a degree that I can’t imagine.  Her mom had breast cancer, and had a double mastectomy, and to date both of her sisters have also had breast cancer, and some level of surgery and other treatments, (all have survived so far) yet my friend (age 63) has never had a mammogram (or hadn’t as of 12 yrs ago).  The only reason I know this is that she admitted to me. At the time of the conversation she wasn’t planning on have a mammogram, for fear that she would find out like her sisters and mom that she also had cancer.  Folks, that’s denial to a degree I can’t even imagine. Please don’t take this route. Sidebar, this has been a good music day, I have just heard Stonegarden again, Eric Clapton, Trace Adkins, 3 Doors Down, Sarah McLachlan, Ronnie Rathers, Match Box 20, Savoy Brown, Rob Zombie, Ray Charles, and Dep Leppard.  Just for my Canadian friends not one song by Nickelback, Yet !

I have another friend who claims she is in denial.  But I think in my friend’s case she isn’t in denial at all (though she claims she is), I believe her to be beyond the acceptance level, and those she is surrounded by understand her plight, understand  her being sick, understand she doesn’t need reminders. She is at a point where she is enjoying life as completely as she can she just refuses to be bothered by the disease anymore.  Maybe that is denial, but she has the love and support of her spouse, and her kids. What more could she need? Why should she worry about something she can’t change?   Why does it need to be a discussion point? Yet she continues to remind herself by maintaining her active membership of the Daily Strength Discussion Group for COPD and Emphysema giving support to others that need it, sharing her strength, giving encouragement when and how she can, and she even shares a bit of her experiences with her disease.  She clearly does not demonstrate a classic case of denial.  She makes me proud, her strength, her character, her caring show that she isn’t denying a thing. She has been a giant supporter since my earliest days being part of the Daily Strength Discussion Group and we continue to share email and hugs on a regular basis.  If I ever slip into denial I truly hope I do so just has she has.

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

 

 

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How I Feel for the Week Ending 5.30.14…

          Subtitle – 1st Official “Ham” Report on my Hospice Care

Good morning folks, I will say without a doubt this report may not reach you until some Sunday June 1.  Shortly I am heading out the door to see “A million ways to Die in the West.”  Then off to do some chores, and finally I will be back here to semi-devote myself to completing this.  So excuses out-of-the-way, let me get the ball rolling and state that it has been a 2.75 week and solid at that.  No new bug-a-boos have come my way, and I do feel physically better than last week.  I have had no doctor appointments this week, but I was visited by Hospice on Thursday (which is a regularly scheduled event).  I will get must more into that in the word of the week phase of my report.

I know it is boring but my general health remains approximately the same from week to week. The coughing is about the same, tiredness seems normal this week, SOB seems to be a little worse than last week, and my energy level seems to be less because of the higher respirations and SOB. But sometimes a new wrinkle appears.  Over the past several weeks I have been having episodes where I wake in the middle of the night, instantly alert, heart racing, and gasping for a breath of air. C-pap machine is functioning correctly, mask securely in place, and no apparent reason for the sudden awake fullness.   Yet it happens. It began several weeks ago, for the 1st time, and it wasn’t a big deal, I woke and gathered myself, then laid back down as was asleep in minutes.  The event did not occur again for a week or so, it was a touch more dramatic the second time, but in my mind still not enough to raise the alarm. Over the past 2 weeks it has happened several times, the events snap me from a dead rest to full alertness in moments, my heart racing, and it takes several moments for my breathing to normalize (for me). But my adrenaline is amped up and can take 20 mins or more before I feel I can lay down and comfortable get back to sleep.  Being honest while freaky, I was not ready to report it to Doc Lungs or Doc Infectious, but my wife dropped a dime on me and spoke to the hospice folks about it.  Apparently I wasn’t as quiet as I thought I was, and woke my wife. Bless her heart for doing so; I know I would have let it go further without saying anything to anyone.  This issue is now in the hands of Hospice and I have been given add additional medication to take prior to going to sleep.  Used this for the 1st time last night, and I didn’t wake with the jump-start last night. 

Let get the vitals out-of-the-way for the week ending 05.29.14

  • INR = 2.3 taken 05.19.14 – next test 2 or 3 weeks – nothing new here

  • O2 level @ 2.5 LPM = 97 taken on 05.30.14 @ this moment, on 5/29 during Hospice visit it was 90

  • Peak Flow = 222 taken 05.29.14

  • BP = 100/61 taken 05.29.14

  • Heart rate = 112 taken 05.19.14, but taken this moment 101

  • Temp = 98.7 taken 05.29.14

  • Weight = 270 taken 05.29.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.30.14, moving now to the word of the week discussion aspect.  This week I will be making my 1st “Ham’s” official Hospice Report.  In which I will bring you up to date on everything that has happened since I came under the care of Hospice.  Please as you read this understand this is an open report, I will try to make it as full as possible, but I am an old fart and I forget things, or sometimes I don’t think something is important enough to add to the mix.  If I gloss over something, or if you don’t see something you may be looking for please please ask me.  This can only help you, if you are getting the answers you need.  

A brief history, on March 3, 2014, I was advised by Doc Infectious that I should consider Hospice as a medical solution.  His explanation was simple; he no longer had the drugs in his arsenal to completely beat any infection I might encounter.  He went on to explain that he would continue to mix and match and do the best he could but that he had no additional weapons by which to fight the diseases associated with COPD that claim me.  He had consulted with Doc Lungs and they were in semi-agreement.  But Doc Lungs wanted to see me before I went into hospice.  My wife and I saw Doc Lungs on 3/4/14 and when asked specifically if Doc Lungs had any available drugs that would fight my infections he said no, but that if I should choose Hospice he didn’t want me to give up.  I assured him I wouldn’t and I haven’t and I won’t give up.  On 3/5/14 I called the LifePath Hospice, they came to my home hours later, filled in the necessary paper work, did a mini medical review, and started to make plans for me to meet each of the members of the Sapphire Team, which I was now a member. My case was reviewed that day, and I was accepted for Hospice care on 3/6/14.

I have a Blue Cross Blue Shield (BCBS) Fed health insurance, with defined costs, exact co-pays, exact percentages for medicines depending on the tier, and on and on. One of my very 1st questions to the Hospice folks was “how much is this going to cost me.” I was extremely anxious because a brief call to BCBS said they (Hospice) were entitled to a $125 co-pay each time they walked thru the door of my home.  To say I was shocked and amazed is the understatement, and suddenly my fear was that I couldn’t afford to die under Hospice care.  The Hospice folks spent hours trying to convince me that this was not the case, and that Hospice would never come after my family for monies due.  Again and again I asked them to put that on an official document.  I refused to accept the “full” hospice treatment until I was sure what my financial involvement was going to be. This issue was totally resolved when my 1st EOB (explanation of benefits) from BCBS indicated I had a zero balance with Hospice. Even though they had been to my house numerous times over the 1st 30 days, I owed them no money at all.  (If anyone is curious as to why, I will explain as it was explained to me under a separate post) I can talk more about my specific finances regarding Hospice if anyone wants or needs that information.  I can only talk about my situation, in my location, and my results.  Clearly there is a ton of wiggle room in any financial solution.  Once this hurdle was cleared I was ready to fully embrace the Hospice experience. 

Now on to the particulars, I have been under hospice care since 3/5/14.  I am visited at least once a week by a member of my Hospice Team (the team is made up of an Internal Medicine Dr, a RN Care Coordinator, a LPN, a Clinical Mgr, a respiratory specialist, a Social Services Spec, the Chaplain, Hospice Aide, and assorted volunteers), The Doctor, the RN and LPN, respiratory specialist, and Social Svc Spec, are constants, as well as the Chaplin, the Aide and volunteers change. I get to learn about them as they learn about me. Either the RN or LPN collect my vitals each week, Hospice will fill any and all prescriptions relating to my respiratory issues, with the exception of the Spiriva at no cost to me.  One of the Hospice volunteer’s calls at approximately 9:30am each Thursday to see if my medicines are good thru the weekend, if I answer negatively, that prescription is filled and delivered to my home by COB (close of business) Friday. If necessary they will make 2 or 3 trips to my home in a day to affect delivery.  When blood work is required they will come to my house to do the blood draw.  They are also becoming my home oxygen concentrator provider, and will provide whatever other medical equipment needs I have right here in my home, and will do so as the need arises.

When Hospice comes, they will spend anywhere from 60 to 90 minutes with me.  They never hurry, they are always concerned (and it clearly shows), they ask prying questions to make sure I am not holding back, but do so in a gentle way.  I almost feel guilty if I try to hurry them out the door.

It should be noted that you can be kicked out of Hospice.  You are evaluated every 6 months to ensure that you still qualify for Hospice care.  If you improve, you’re out, if you’re not moving towards end of retirement at a rapid enough pace your out.  Folk’s flunking out of Hospice is not a bad thing. And they will welcome you back with open arms when your circumstances change.  I have only been under their care for 2 ½ months and they have been wonderful to me.  I am sure as end of retirement nears, my needs will change as well, and I will report those as long as I can.  But if I have anything to do with it, I maybe kick out of Hospice, smiling at least once. 

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

 

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How I feel for the week ending 05.23.14

I am getting a late start on this, only because I have been lazy, played cards did some shopping, some games, now as evening approaches I decided to commence work on my weekly status.  Most likely this will be completed sometime tomorrow, because most of the chores are done for the weekend already.  My only doctor appointment this week has been with Doc Head.  As always I find the sessions to be extremely helpful and because I never have an agenda when I walk into her office I never really know how we will spend the 45 minutes.  I can say in all honesty that I have never left her office feeling worse than when I when in.  I also had (so they think) the final conversation with the billing folks at Doc Infectious office.  To say that Doc Infectious billing is FUBAR is really giving them way more credit than they deserve.  I know there is a post there and I will address it separately.  I am rating the week 2.5 for the following reasons, the SOB (shortness of breath), is eating my lunch.  Even inside in an air-conditioned space with minimal activity makes me stop to gasp.  Couple that with the early summer heat and humidity which is on the rise, and is for the next several week, is an unwanted burden on the lungs.  Also sleeping has been a recent issue, I am normally good for 5 or 6 hours a night, of course I do get up a couple of times because nature is screaming in my ear, but recently I have been waking up gasping, and quite short of breath. Because I wake so violently I am tending to stay away longer before falling back to sleep.  All of these elements make the grade a 2.5 for the week. But it is a happy 2.5.  Also you need to understand that I am doing the best I can to keep my head out of my weekly score.  If I were to grade my week mentally I would give it a solid 4.75 out of 5.  The head has been and continues to be great.  Sure there are hiccups, but even healthy folks have hiccups. 

What I said last week regarding my general health still applies Health wise very little has changed, the coughing is about the same, tiredness above normal, SOB seems to be progressively worse than last week, and my energy level seems to be less than what I would consider normal. Also, my respirations are still running at a rate over 20 breathes a minute. I suspect the time of my respirations being less than 20 a minute are gone.

Let get the vitals out-of-the-way for the week ending 05.23.14

  • INR = 2.3 taken 05.19.14 – next test 3 or 4 weeks

  • O2 level @ 2.5 LPM = 93 taken on 05.19.14

  • Peak Flow = 218 taken 05.19.14

  • BP = 100/70 taken 05.19.14

  • Heart rate = 104 taken 05.19.14

  • Temp = 98.6 taken 05.19.14

  • Weight = 268 taken 05.19.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.23.14, moving now to the word of the week discussion aspect.  This week’s word come at the request of Doc Head, she suggested I write about “ACCEPTANCE.” Back in my high school days I would have blown off this homework assignment, but I no longer go to high school, and I have matured a tiny bit since then.  So this week I will talk about “ACCEPTANCE.”  As per usual we will start with the web dictionary definition of the word:

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

Sidebar, we have been listening to the likes of the Dixie Chicks, Garth Brooks, AC/DC, Creed, 3 Doors Down, CSN and the Wallflowers so far, this portion of my weekly report has been quite easy….

ac·cep·tance  noun : the act of accepting something or someone; or the quality or state of being accepted or acceptable

Full Definition of ACCEPTANCE  1:  an agreeing either expressly or by conduct to the act or offer of another so that a contract is concluded and the parties become legally bound. 2:  the quality or state of being accepted or acceptable. 3:  the act of accepting :  the fact of being accepted :  approval 4 a :  the act of accepting a time draft or bill of exchange for payment when due according to the specified terms.  b:  an accepted draft or bill of exchange  

First Known Use of ACCEPTANCE – 1574

Acceptance, of all the thoughts that have run through my mind since I was first diagnosed with COPD, and realized the reality that it is a terminal disease. I have accepted that fact. For the 1st few weeks I probably pouted a lot, but I don’t ever remember having the “why me’s” or looking to shift the blame, I have complete acceptance of my outcome.  I had been a heavy smoker (and I mean Heavy), I was probably more surprised to find out that COPD was going to kill me and not cancer.  But (yeah, another one) acceptance does not equal quitting, acceptance does not equal giving up, acceptance does not mean hiding away until it happens, acceptance does not mean stop living. BTW acceptance does not mean go out and max out your credit cards either.  Acceptance really is just an understanding that for whatever reason your life is shorter than you wanted. It also means that you should look at each morning when you wake as a gift, and then thank God for giving you another day to share with those you love.

As anyone who has read more than one of my posts, you know I am never at a loss for words and that I talk about my illness endlessly. I am forever sharing the fact that I suffer from a terminal disease, and that I am dying.  I stand (sit actually) here at my pulpit, and I share with you what I am going thru.  I share my vitals, my symptoms, the medical advice, and hopefully some wisdom as well.  This folks is part of my acceptance, but acceptance goes beyond the just accepting you’re pending end.   Sidebar: we have had a vast selection of music today, breaks, just thinking and other interruptions have led to songs by Seether, Theory of a Deadman, 3 Doors Down, Matchbox 20, Jimi Hendrix, being added to the mix.   

From my own perspective I truly believe it is much easier for the sick one to except their situation, accept they will die much sooner than they wanted or expected.  I am not saying this is a universal truth, it just me I am talking about.  But and it is a large one, accepting that you have a terminal disease is one thing, accepting all that comes with it is a completely different thing.  This acceptance is a much coarser grain to swallow.  While I have accepted my pending end, there are so many other aspects between now and that point that I have not accepted, that I have not embraced, that I still fight.  COPD has robbed me of so many things that if asked I would try to deny it before admitting it conversationally, but I won’t admit to myself.  My physical capabilities have diminished greatly (but I still have some), I am now a 90 pound weakling hidden in a 265 pound body (but I can still carry 8 or 9 bags of groceries), and my stamina all but gone (but I still find ways to get it done, it just takes a lot longer).  But if you watch me pull into the garage, you would see me grab up 8 or 9 shopping bags of groceries and carry them into the house as the garage door closed, you would go WOW! Bill’s doing great.  But you wouldn’t see the struggle, you wouldn’t see me pant for breath, you wouldn’t see my head bowed in submission.  Only a very few very close friends get to see that, hell I did the best I could to hide it from my brothers while they visited. Folks, that’s the part of acceptance I haven’t accepted.  Also, I haven’t accepted the assumption that I may be less of a man.  No matter when the end comes there will just be things I haven’t and don’t intend on accepting. 

Each of us has to go thru the acceptance process, we will make stops along the way, we will forego some steps entirely, and other steps we will embrace.   Each of us has a comfort level, a need level, a desire level, a want level.  At each of these points we will also be faced with an acceptance level. We will come to a point that we know we must accept help when we never expected to, accept care when we thought we would always be the caregiver, and accept the fact that our body  has changed, and does not function as we think it does. And as we reach total acceptance, we will most likely learn that we must also accept a lot more before we reach the end.

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

 

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How I Feel for the Week of 05.16.14

For the week ending 05.16.14, I decided to cheat and start this report on Thursday morning as I sit and have my monthly IVIG treatment. It is a quiet place, and I am causing a ruckus by having the audacity to actually question the billing methods.  LOL my vitals are checked repeatedly throughout the process, and my 1st blood pressure reading of the morning was 112/62 after the initial conversation with the billing folks my blood pressure was 124/74, 30 mins later bp is now 132/82. I told them to go ahead and call 911 because by the time I get the billing issues resolved to my liking I will most likely have a stroke. I am not the least bit surprised but the upswing and I suspect before the end of the billing conversation it will be in the 140/90 range.  But it will drop quickly back to normal 5 minutes after the process is complete. Sidebar; The 1st comment I received pointed out that I didn’t give a score for how I felt for the week.  I am rating the week overall a 2.75.  It was a good week, not great, but the fact that I was so dang busy all week kept the score from climbing.  BTW thanks Brenda for pointing this lapse out.  Yes LOL I failed an expectation. But Thanks for pointing it out.  Take care, Bill

Health wise very little has changed, the coughing is about the same, tiredness normal, SOB seems to be progressively worse than last week, and my energy level seems to be less than what I would consider normal. Also, my inspirations are still running at a rate over 20 breathes a minute. There seems to be no repercussions from the removal of the tooth, and no residual pain.  I will admit that I am falling apart LOL LOL I will also admit that when I do these weekly reports they are more a general health update and not strictly related to my COPD.  I guess the simple thing is the fact that folks with COPD or other terminal diseases have “normal” health issues to deal with during their progression thru the disease.

Let get the vitals out-of-the-way for the week ending 05.16.14

  • INR = 1.8 taken 05/12/14 – dosage changed – retest on 05.19.14

  • O2 level @ 2.5 LPM = 92 taken on 05.15.14

  • Peak Flow = 212 taken 05.15.14

  • BP = 112/62 taken 05.15.14

  • Heart rate = 108 taken 05.15.14

  • Temp = 98.2 taken 05.15.14

  • Weight = 267.2. taken 05.15.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.16.14, moving now to the word of the week discussion aspect.  This week for the 2nd week in a row, we are going to talk about Expectations.  I had a tremendous amount of positive feedback on the topic of expectations, both here and on DS, for which I’m greatly appreciative. Last week I spend a good bit of time talking about the expectations we impose upon ourselves and the very real need to give ourselves a break.  Today I would like to talk about those expectations that others have and place on us.   As normal we will start with the web dictionary definition of the word:

http://dictionary.reference.com/browse/expectation

ex·pec·ta·tion  — noun  1. the act or the state of expecting: to wait in expectation. 2. the act or state of looking forward or anticipating. 3. an expectant mental attitude: a high pitch of expectation. 4. something expected; a thing looked forward to. 5. Often, expectations. a prospect of future good or profit: to have great expectations.

Last week I found this to be one of the better definitions I have used for a word or phrase, this remains true for this week, and it’s still a great definition.

When I wrote about expectations last week I briefly spoke to the expectations that others hold us to.  I earnestly and flippantly said “F…..K them.”  I have had a week to think about that remark and I really wish it were even remotely that simple.  I am equally sure when you read that last week you had to have said “Bill, you got to be kidding, it’s never that simple.”  In truth (in my opinion) F them is the furthest point from that position.

The expectations others have is us, come from many places: a. the expectation may be a value that the imposer establishes without any regard to the individual, b. the expectation may be the result of a previously demonstrated skill or talent, c. the expectation may come as a result of a learned or taught behavior. d, the expectation may come from a performed habit, e. the  expectation may come from a negotiated agreement or f. the expectation may come as a result of or a combination of these.  More troubling is the fact that the expectation could come from or be imposed upon you from someone you don’t even know.  A good example of this could be a high school athletic that demonstrates superb skills that is being watched and stalked by recruiters and coaches at higher levels of the sport based purely on their expectations for his potential. That athletic could say F it, and be done. But rarely does that happen, what generally happens is that the athletic learns of the expectations and works to meet and exceed those expectations, those expectations becoming the focal point of their lives.  I am sure you have seen many other examples of this type of expectation and I am not going to dwell on it for this post.

This post is about the expectations others place on the sick and terminally ill.  It’s about how those of us in this position deal with the expectations of others.  Everyone has someone who expects something. This is just a simple fact of life.  But the expectation and the direction from which is comes can have a dreadful impact.  The direction can come from a spouse, a child, some other loved one, a neighbor, a caregiver, the boss, a co-worker, and the list is really endless.  Thankfully most of us only have expectations from a couple of directions.  I believe the closer the caregiver is to the individual who may be ill, the less the expectations drop during the course of the illness, until it is slap in the face apparent.  Then the expectations drop dramatically.  Clearly this isn’t always the case, but the ones closest to the person who is sick, sees each gradual step of decline, and these steps blend together, making noticing the change that much more difficult, and because the change isn’t noticed, the expectation is not reduced.  If you don’t notice the change it is extremely hard to adjust one’s expectations.  This isn’t the care givers fault; I believe it’s just nature.  But it doesn’t change the fact that the care giver while seeing the deterioration of abilities does not adjust their expectations.

Sometimes the care giver does in fact notice the inability of the ill, to perform has they had, and actually addresses it with the person receiving care.  It is incumbent on the person needing care, to speak up, to acknowledge that they need help and be honest and forthright about it.  Folks, I have to stop here and WAVE my hands, because this is clearly a case of “do as I say, and not as I do.”  I am terrible, and I am sure I have put my wife into a bind because of it.  I do still try to man up and meet every expectation no matter the source.  Thankfully I know some very forgiving folks.  There are a bunch of qualified folks that can help both the care giver and the care getter they include; Counselor’s, Clergy, social workers, and Hospice to name a few.  Seek these folks out, find some neutral ground to have the conversation and work on the problem. Soft smile, believe me in my case it will/would/has taken more than one conversation, and it is an ongoing conversation. During the conversation be honest.  I will repeat that be honest.  Having said that, I know, I KNOW, that being honest is not nearly as easy as typing it on this page, but you must make the effort to communicate, these conversations are a must, and they build a foundation by which you and your care giver can keep the lines of communications open.  I know from feedback I have gotten over the last year that some spouses are in some level of denial.  I know this is particularly hard on the care getter, they have made their situation known, they have tried to have the conversations, maybe they have even drawn in outside resources, but the dynamics necessary to get the message through to build that foundation are just not working.  Please don’t give up, that is the last thing either of you need.  Am I saying be a pain in the ass to get the message through, yes I guess I am.  Being gravely ill, or worst terminally ill, is stress enough all by itself.  But outside sources laying unattainable expectations on you does you no good at all. Earlier I said talk to someone, a counselor, your clergy, and your doctor, enlist their help.  Clearly if the caregiver is an employee of some organization get rid of them and have that organization provide someone who understands, and makes the necessary accommodations.  If the caregiver is a spouse or other loved one that will be more difficult.  And I am not smart enough to have a solution, and even if I were, that doesn’t mean my offered solutions would work for you.  I am saying don’t close the door, keep communicating.  If your spouse or other loved one isn’t willing to seek counselling with you, then GO BY YOURSELF, the counselor can and will help you find ways to cope.

Finally a very important aspect which I have not addressed is that the “caregiver” needs help too.  I am a care getter; I know what a PIA I can be.  I know how pig-headed I am. I know I am forever telling my wife I can handle it.  Folks, sometimes I am so full of CRAP.  Having said that, the care giver is under such stress, I would say that the vast majority of care givers are spouses or loved one.  Folks they need time off, the job of care giver has got to be one of the most difficult in the world especially if that care giver is also working full-time to provide the essentials.  A full-time career and a full-time role as a care giver has got to be daunting, it has to wear them down and out.  It has to make them short-tempered from time to time, they do need time off, quiet time, peace, and a real opportunity to relax and regroup.  So it is our job as care getter to accept this and promote this, and help our care giver to the fullest extent possible without over doing.  That’s a key here you can’t over do.  Your care giver needs your understanding, your blessing, and your insistence that they can take a break and grab some me time.  Please keep this in mind.

This has gone on way to long. I thought when I started Thursday that I would have wrapped this up and posted by sometime Friday afternoon.  But life got in the way.  I hope this opens the door for communications, and allows for the dynamics between care giver and care getter to form its own bond.  Also I am sure this won’t be the last time we talk of these roles and responsibilities.

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

 

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How I Feel for the Week Ending 05/09/14

For the week ending 05.09.14 this report will undoubtable be late, but it will be coming from my home and under the influence of my music.  Sidebar, it is one of those days, and I started the music with Vince Gill’s “Go Rest High on the Mountain.” Smiling I am in a Country Music kinda mood, so we have moved on to Big & Rich’s “Why does everyone want to kick my ass”.  We are out of the hotel, and have been since Wednesday evening, and Lord to I appreciate being home, in my own bed, my own shower, and my frig!! It is so refreshing to be home.  The wife is tickled to death with the new floor, and we all know happy wife = happy home.  The oral surgery went well (on Tuesday), and the offending tooth pulled, and have only a slight bit of post extraction pain, so little in fact I have only taken one pain pill in the last 24 hours.  If I live to be a 100 I might end up with dentures. LOL LOL. The only other appointment I had this week was with Doc Head, it is nice to have someone who you can completely bare your soul and inner thoughts without fear of repercussions.  Oh it appears that Hospice day will be on Thursdays.  They will come once a week to check me out, they take all vitals, make sure all my prescriptions are up to date and that I have enough to get thru the weekend at a minimum, ask several questions regarding my general health, and then out the door.  Hospice will take care of all my medical needs that I need that relate directly to my COPD.  They won’t supply medicines that may deal with other medical conditions.  Sidebar, we just listened to Toby Keith’s “I’ll never smoke weed with Willy again.” Smiling, fun song. All things considered, tooth pulled, living in a hotel, managing the contractor replacing the floor, and putting up with the Florida heat and humidity I am going to give the week a very solid 2.75.  The other reason the week gets a 2.75 is because very little else has changed, the coughing is about normal, tiredness about the same, and the respiration’s are staying above 20 + breathes a minute, which makes the heart work harder.

Let get the vitals out-of-the-way for the week ending 05.09.14

  • INR = 2.1 taken 04/08/14 – next INR reading scheduled for 05.12.14

  • O2 level @ 2.5 LPM = 95 taken on 05.08.14 – I would say spot checking my O2 level this week has found on average about 91/92 range.

  • Peak Flow = 215 taken 05.08.14

  • BP = 122/64 taken 05.08.14

  • Heart rate = 122 taken 05.08.14

  • Temp = 98.7 taken 05.08.14

  • Weight = 268 taken 05.09.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.09.14, moving now to the word of the week discussion aspect.  This week we are going to talk about Expectations.  We all have expectations that we impose upon ourselves and those others have in us, today I would like to talk about those expectations.  As normal we will start with the web dictionary definition of the word:

http://dictionary.reference.com/browse/expectation

ex·pec·ta·tion  — noun  1. the act or the state of expecting: to wait in expectation. 2. the act or state of looking forward or anticipating. 3. an expectant mental attitude: a high pitch of expectation. 4. something expected; a thing looked forward to. 5. Often, expectations. a prospect of future good or profit: to have great expectations

Of all of the definitions I have drawn from the Internet to use for this part of my post, this definition is one of the clearest to date.  It is safe to say that each of us with a life threatening disease face two prime points of expectations. One; those expectations that come from within ourselves, those we think and feel when we look in the mirror or set about doing a task, or two; those expectations that others have for us.  This second group of expectations is a whole big can of worms in and of itself and I will talk to that next week.  But the simplest way to address those expectations is to say FUCK THEM, but I will get into that further next week.

As kids when we do something successfully, we anticipate being able to do that again and again and again.  Once that accomplishment registers in our head it stays there forever.  We from that day forward, always have the expectation that we will always have that same level of success whenever we attempt that activity. Experience and effort, coupled with a level of success establishes expectations in our head. Sidebar: we have been listening to Travis Tritt, Trace Akins {(This ain’t no) thinkin thing}, Dixie Chicks, Lucinda Williams (Change the Locks), Garth Brooks (Friends in Low Places), and Gretchen Wilson, to name a few. The problem is that sometimes I listen and sing instead of typing. We experience in so many things, from school work, to sports, cooking, yard work, building things, carrying or lifting different levels of weight, and on and on.  Through our accomplishments and experience we find that doing things will take this level of effort and this amount of time.  That activity could be doing the laundry, cooking dinner, doing the dishes, cutting the grass, folding cloths, walking down the street, yard work, and all other manner of daily household chore or projects.  Again success breeds expectations. 

Soft smile, the aging process is a marathon not a sprint.  As we age, we gracefully and gradually come to conclusion that the process does impact our expectations, but because acceptance happens steadily over an extended period we softly slip into a lower level of self-expectations. This in my opinion is nature’s way, the way it is supposed to be.  We turn around and look the majority of our counterparts and we see the same process is taking place in them as that we see in the mirror, and because of this we collectively are okay and accepting of the process.

But when you are terminally ill this process seems to be in overdrive.  Tasks that we would have done without breaking into a sweat 2 or 3 years ago (longer or shorter depending on you), we now have to take break after break after break to accomplish. Some tasks we don’t even bother with because we may not have the breath or stamina to complete. Some of us (especially me) are embarrassed easy when we (I) don’t have the ware for all to complete a task. Sidebar: for all my great Canadian friends, I have switched gears and now have Nickelback blasting in my head LMAO, because I try to keep my posts at the PG-13 level I can’t even tell you the names of most of my favorite Nickelback songs LOLBut I am here to tell you we need to get over it, and we have to acknowledge the fact that we do need to lower our personal expectations.  We need to come to grips with the fact that our diseases have robbed us of the capabilities we once had.  To acknowledge this doesn’t mean we send out the invitations to the pity party.  It means that if we had the expectation to complete a task in 15 minutes and it now takes 30 minutes, then damn it, it takes 30 minutes. But by completing the task we have met the expectation, and this my friends is a moral and physical victory. I started this post last night around 11pm.  It is now Saturday, but since I started today I have, made the bed, emptied the dish washer, when out to breakfast, and stopped at the grocery store. Not even mentioning a bunch of little crap kinda things. I will admit that I am a bit tired, but I met my expectations.  Years ago I would not have budgeted as much time, and I sure would not have inserted as many breaks into the completion of these tasks that I have.   

Changing your personal expectations is nothing to be ashamed of it’s no reason to hold your head down. It is terrible unfair of you to hold yourself to self-imposed expectations that will disappoint yourself when you don’t complete them. BTW everyplace you see a “you” I am talking about me, if it applies to you, apply it.  COPD has robbed me of many things, and it will end up shortening my life by many years.  But I will not let self-imposed expectations which I fail to meet drag me into a deep dark hole.  I would suggest you don’t let it drag you into a hole either.

Next week I will talk about the expectations other TRY to impose upon us.  I suspect it will be just as emotional as this. 

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

 

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It’s just another Chapter….. a Grandpa Tale

Last week in my weekly “How I Feel… (5.2.14)” post I announced that because of the advanced stage of my COPD, that I was now under the direct care of Hospice. As you know I have made no secret regarding my fight against COPD, reporting weekly on my current health. I have spoken at length regarding exacerbation and hospitalizations, the drugs that have been prescribed and the dosages. I have given every possible vital sign that I have had. All in the name of keeping folks informed. And that really is what this is all about. It has been my supreme hope that my words have given some folks a level of comfort. Through my honest “tell all” approach, I hoped I have in some way answered some of the many unasked questions. 

When I started this blog it was going to be my soapbox from which I preached about COPD, smiling I have done a pretty fair job of preaching and a lot of storytelling to boot. As I review what I have written over the last 2 years, the overall body of work is nothing more than a bunch of chapters about me. What started as a BLOG about COPD became a living autobiography of Bill Hamilton. None of the Chapters are in sequence and some chapters speak to a single incident, others to periods of years, many of the chapters speak specifically to and about COPD. But none the less each post is a chapter in my life.

Folks, my going into Hospice care isn’t by any means the final Chapter. But it will be a chapter that addresses some if not a lot of issues that folks with terminal diseases face at that stage of their life. In many ways I will most likely bore you to tears, and in some cases I will make you shed a tear. And trust me I will make you laugh your ass off from time to time. As I transition towards the “end of retirement” I will share the good and the bad, the stuff that makes me smile, and the things that make my ass burn. Damn I used the word ASS in two sentences in a row that is a new record. And if possible I would want your participation, if you had a specific question I can ask my care givers please feel free to do so, I will get you an answer as best I can. If I don’t explain something or you need additional information please feel free to ask. If you want to know my personal feeling about the treatment, costs, my attitude or whatever please ask. If you don’t want to make your question public email me dealingwithcopd@aol.com and I will respond directly back to you. This will be as much for you as it is for me. Most likely I will give my caregivers names (just as I have used Doc Head, Doc Infectious and Doc Lungs for the past year) so I can talk about them like the real people they are, and the process they are guiding me thru.

Please remember this isn’t my final Chapter, I have a long time to go. I have bunches of stories I need to share about my Daughter, my Granddaughter, my wife, myself and my life. Also trust me I am not going to focalize on Hospice each week. I figure my weekly “How I Feel’s” will pretty much remain the same because even in Hospice, Doc Lungs is still my primary Lung Doc, Doc Infectious is my primary infectious disease doctor, and Doc Head will still be my head doctor. I will still see them on a regular basis, and they will watch out over me when I am hospitalized. But Hospice will also be watching to ensure that just because I am terminal I am not overlooked. I suspect that my posts will be SSDD (same shit different day), they will be a mix of health related posts and Grandpa Tales. When it comes time for that final chapter to be written, it most likely won’t even be written by me. I have asked my daughter to post something, and I am sure at least one other person will write that final post for me. Heck, I may have something in the wings to share as a part of the final post. But remember that is a long way off.

Smiling, moving to a less morbid change of pace, if I every post that I have been kicked out of Hospice put on your dancing shoes and do your happy dance. LMAO being kicked out of Hospice is a treat, it means you’re not succumbing to your disease rapidly enough to require their services, and that folk’s is a good thing.

As always if you have any questions, concern, or thought you want to share please feel free. Take care and have a great day. Bill

 
21 Comments

Posted by on May 8, 2014 in Grandpa Stories, Observations, Ramblings

 

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How I am Feeling for the week ending 05.02.14….

For the week ending 05.02.14 this report will be coming from a more quiet place and time. The wife and I are now in a Hotel while the new flooring is installed in our home. But in packing some things were forgotten, including my IPod, so I am without music, and you are deprived a music list (I don’t know how I am going to be able to write). It has been hectic as hell this past week. The Brothers have gone back to Louisville, and my wife is back from her bucket list trip. The house is in full disarray, and I have this friggin tooth ache. Gee always something to look forward too. 

Health wise very little has changed, the coughing is about normal, tiredness about the same, I am breathing more times a minute than I should (I am taking more than 20 breathes a minute and the level of exertion is immaterial) , finally the issue will the tooth will be resolved this coming Tuesday. I did see the dentist after getting my brothers off for their flight Monday morning. After taking x-ray’s Doc Tooth decided it could be either an infection in the gums or the need for a root canal. We decided to give the antibiotics a chance to work, but after 4 full days of meds it was clear that the “potential infection” was more than “potential infection.” So I called and made the appointment with the extraction artist, for Tuesday morning 9am sharp. So I will be living on pain pills until Tuesday. And like any other time it is always wise to get ahead of the pain and stay there. For most of the week I have been using half doses of pain medication, and last night I realized I was being stupid and started taking the full dose, and have been since. Hell I should have just scheduled the extraction before I left the dentist office last Monday. But I am old and I am still making mistakes, but someday I will learn. Based on all I know about how I feel and the circumstances, I am going to give myself a 2.75 for the week.

Let get the vitals out-of-the-way for the week ending 05.02.14

  • INR = 2.1 taken 04/08/14 – next INR reading scheduled for 05.12.14

  • O2 level @ 2.5 LPM = 90 taken on 05.01.14 — several times this past week random checks have found my O2 level in the mid to low 80’s. The more activity the lower the reading.

  • Peak Flow = 225 taken 05.01.14

  • BP = 142/72 taken 05.01.14

  • Heart rate = 112 taken 05.01.14

  • Temp = 98.6 taken 05.01.14

  • Weight = 272. taken 04.30.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 05.02.14, moving now to the word of the week discussion aspect.  Just a couple of weeks ago I spoke of this word, I believe it deserves more time than I originally gave it, so back by popular demand (this is internal popular demand) is the word Hospice. The definition hasn’t changed a word in the 2 weeks since I originally posted my remarks. So I just did a copy and paste on the Hospice so that information. The source still comes to us via:

http://dictionary.reference.com/browse/hospice

hos·pice , noun – 1. House of shelter or rest for pilgrims, strangers, etc., especially one kept by a religious order. 2. Medicine/Medical a. health – care facility for the terminally ill that emphasizes pain control and emotional support for the patient and family, typically refraining from taking extraordinary measures to prolong life. b. a similar program of care and support for the terminally ill at home.

For those that have been following along on these “How I Feel … “ reports know, one of my chief concerns has been and is hospitalization. No matter what they do, as a sufferer of COPD once you go into the hospital or have an exacerbation of the COPD you never get the ground you lost back. Each trip to the hospital, each exacerbation is one more step down the ladder. But the problem with the ladder is that the distance between rungs is never the same. Sometimes you might lost .5 percent of lung function the next trip or exacerbation you may lost 2 or 3 percent of lung function. Also another major concern is the medicines available to treat the illness that took you to the hospital in the 1st place. As you are aware the more often you use a drug, the more your body and the disease being treated builds a tolerance to that medication and they are not as effective. Over my last few exacerbation and hospitalizations I have grown more and more aware of this lack of effectiveness. In early February, Doc Infectious told me he was running out of drugs to treat my COPD. In early March this was again confirmed by Doc Infectious, and Doc Lungs to his dismay supported Doc Infectious suspicions. But both are confident that under the best circumstances, they can mix and match a witch’s brew that will get me thru it. But it was suggested by Doc Infectious that I should consider going under Hospice care. Doc Lungs called me, and asked that I come in and see him before making or committing to this plan. The following day Steph and I visited with Doc Lungs, he much to his dismay agree with Doc Lungs, but he wanted me to understand this was not throwing in the White Flag. Further conversation confirmed he had no alternative drug therapy. There wasn’t a magic pill or mist to nebulize to make things better. Doc Lungs agreed with Doc Infectious assessment, that I have “a year or so.” Of course the key will be staying out of the hospital, and avoiding an exacerbation to the fullest extent possible. 

I know this is a long way to get to the point. I am now under the care of the local Hospice. I have been under their care since the early part of March. Over the next several months I will be talking at length about my Hospice experience. So far it has been extremely positive. I have been overwhelmed with the caring, concern, and compassion the Hospice folks I have encountered have displayed. Hospice is not a place someone just goes to, to give up and just die, it is so so much more than that. It is extremely supportive, and the benefits I have seen so far are outstanding for the patient and the patient’s family, friends, and others. Over the next few weeks and months I will provide a detailed report on the treatment program, the process, the ins and outs, and I will answer any specific question that is asked of me. I will be as forthright as possible. I do not find the prospect to be something to be feared, but something that will allow and give strength to the patient. 

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

 

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How I Feel for the Week ending 04/18/14……

For the week ending 04.18.14, while I am starting it a little later than normal I will have plenty of time and few interruptions because I am a bachelor for the next 2 weeks and I am in complete control of my schedule.  So any delays are purely my fault and I take complete and total credit for them. The jukebox is fired up and today will be featuring a lot of loud shaking the windows music focusing on whatever catches my fancy and is driving.  Sidebar; So be warned a lot of Nickelback will be played today, with a good mix of SRV, Hendrix, Seether, Theory of a Deadman and Puddle of Mudd to name a few. I don’t believe I will be playing any ballads today. Also I won’t be complaining about Pollen this week, it will be hanging around for a at least a couple more weeks so no sense continuing to beat that horse, but I will say I do notice the difference between moderate levels and high levels of pollen.  So if you discount the impact of the pollen, I have had a good week. Yes SOB is still a very real and pressing issue and one that pretty much rules the roost.  But I feel better this week than I did last week.  I am going to break my trend of going in .25 increments and say that this week I feel 2.9 all things consider and evaluated fairly.  I have not changed my scale it has just been a good week. 

The week I have had 2 doctor appointments; one with Doc Infectious, and the other my monthly IVIG treatment.  The appointment with Doc Infectious was very positive.  He has created a standing (protocol) order that if I come into the office at any time complaining of the symptoms associated with having a COPD exacerbation, that a predefined series of blood tests would be taken.  In addition, I would immediately be proscribed X drugs to be delivered to home.  My Mediport would be accessed before I left the office so I could administer the necessary IV drugs.  This avoids the emergency room and allows me to stay home for treatment.  I find this to be a BIG plus.

Let get the vitals out of the way for the week ending 04.18.14

  • INR = 2.1 taken 04/08/14 – next INR reading scheduled for 05.12.14

  • O2 level @ 2.5 LPM = 93 taken on 04.18.14 — avg daily is 92 for week

  • Peak Flow = 230 taken 04.18.14 – avg for week 220.

  • BP = 116/64 04.14.14 and 132/76 taken 04.17.14 – I will be damn if I know why there is such a big swing

  • Heart rate = 106 taken 04.17.14

  • Temp = 98.7 taken 04.16.14

  • Weight = 271.2 taken 04.14.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 4.18.14, moving now to the word of the week discussion aspect.  This week I have chosen Hospice. The definition used in today’s post comes to us via http://dictionary.reference.com/browse/hospice

hos·pice , noun – 1. House of shelter or rest for pilgrims, strangers, etc., especially one kept by a religious order. 2. Medicine/Medical a. health – care facility for the terminally ill that emphasizes pain control and emotional support for the patient and family, typically refraining from taking extraordinary measures to prolong life. b. a similar program of care and support for the terminally ill at home.

Origin:  1810–20;  < French  < Latin hospitium hospitium

Saying Hospice to a group of folks that could be, who are, or know someone who is terminally ill is kinda like dropping the “F” bomb in a completely inappropriate place.  But there I said it. I have had very little personal experience with Hospice or Hospice care.  If you had asked me a few years ago about it, what little I knew wasn’t positive, and could fit inside thimble.  My father passed away as they were moving him to a hospice bed, my Mom passed away after spending no more than a week under hospice care, and my friend Mike passed away after 5 days at the hospice house.  Of the folks I have known, Mike was under hospice care for the longest period of time, it may have been as much as his last 5 weeks.  Mom, Dad and Mike were all deathly ill at the time of their involvement with Hospice.  And because of this I have always felt that Hospice is only short-term, weeks not months, and surely not years of care.  Being honest that was my extent of knowledge of hospice. 

But Hospice care is much more involved that my naïve thoughts.  They provide a wealth of services not only to the patient but to the family as well.  And it needs to be understood from the very 1st their job isn’t to expedite your passing, but to make your passing as comfortable as possible for you and your loved ones and friends.  I have done a tiny bit of research and have found that Hospice has cared for folks as long as 3 years prior to their passing.  Hospice provides 24/7/365 medical coverage for the patient.   You are not denied life-sustaining medications, you are visited weekly by an RN or LPN, and your medical equipment needs are met.  Hospice has trained professional social workers, trained volunteers, Chaplains, and a host of other services tuned directly to the need to the patient.  In addition there is an extensive support network set up to aid your spouse, children or family, as well as, friends.  

Other important information to have regarding Hospice is that you can opt out any anytime, and opt back it, if the need occurs. Also you are evaluated on a regular basis (every 3 months by an RN, and every 6 months by a doctor) to see if you still meet the criteria for Hospice care.  In other words Hospice will OPT you out of the program if your health warrants; you’re not declining but maintaining an even level, or if your health improves.  Look at it this way, if you going to be kicked out of something, being under Hospice Care would be high on my list. 

Some of us may cringe when we hear the term hospice used about us.  My point is that in reality at the time we may need them the most, is when they will be there for your or me.  That we should do our own research, and become familiar with the program and how it will aid us (and our families) in our transition.  

As always thank you for indulging me as I have rambled on.  I hope you have a great weekend.  If you have any questions or concerns please feel free to ask, if you want to comment those are appreciated as well.  Take care, Bill

 

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How I Feel for the Week ending 3.28.14… (sorry for delay)

The week ending 3.28.14 has come and gone, and it 725am on Sunday morning. But I am going to write this as if it were still Friday the 28th of March.  So the crushing defeat of the University of Louisville to the damn WildCats of Kentucky will not play in the assessment of my health for the week.  As I have been stating the SOB (shortness of breath for my new readers) is the dominant factor in how I evaluated my health in recent weeks.  Given that I will rate the week a weak 2.75.  This week has been particularly stressful mentally and therefore physically (which makes stress the word of the week). Sidebar musically we will start with the Allman Brothers Band “Statesboro Blues.”  

Last week I gave my health an overall rating of a solid 2.75, even with the stress of the week, I am only going to downgrade my overall health to a weak 2.75.  All things considered even considering a visit to my Dentist the week still gets a 2.75.  Last week I didn’t complain of headaches or any other aches and pains, this week again no out-of-place difficulties that I can define.   Also last week I briefly discussed adding the mental health factor into my weekly assessment, I am still noodling this around.  The more I think about the mental component of one’s health, the more I see the validity of addressing it on a regular basis.  I am pretty sure I can say, and that you would agree, a happy head helps the body stay happy. Sidebar, of course we had to have some Nickelback, so “Next Contestant” is blasting away.  

Last week I touched on attitude does help carry the body thru difficult times, but please don’t think for a second that I advocate attitude over medicine.  But a great attitude and good medicine is a very difficult combination to beat.  I truly believe this and as I said last week “My attitude has carried the load, and has allowed me to press on.”  This also bears repeating from last week “The fact remains for COPD or any other traumatic disease the patient’s attitude will do just as much towards their recovery or functionality as taking all the required medicines does for their body”.

Let get the vitals out-of-the-way for the week ending 03/28/14

  • INR = 2.0 taken 03/24/14 – level is therapeutic no changes in dosage
  • O2 level @ 2.5 LPM = 95 taken on 03/30/14  
  • Peak Flow = 225 taken 3/30/14
  • BP = not take recently enough to chart
  • Heart rate = 98 taken 03/30/14
  • Temp = 98.6 taken 03/30/14
  • Weight = 272 taken 03/30/14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 3/28/14, moving now to the word of the week discussion aspect.  This week I have chosen Stress, for two reasons, one I have been under a ton of it this week (this was the prime reason) and 2 one of my good blogger buddy’s wrote a post about stress.  I have not read her post or commented yet so while we listen to some “Big and Rich,”  I am going to read and comment on her post.

There is the text book definition of stress.  Taken from: http://dictionary.reference.com/browse/stress

Origin:
1275–1325;  (noun) Middle English stresse,  aphetic variant of distresse distress; (v.) derivative of the noun

Stress as a Verb

verb (used with object)  1. to lay stress on; emphasize.  2. Phonetics . to pronounce (a syllable or a word) with prominent loudness: Stress the first syllable of “runner.” Stress the second word in “put up with.”  Compare accent (  def 18 ) . 3.to subject to stress or strain. 4. Mechanics . to subject to stress.

verb (used without object) 1. to experience stress or worry: Don’t stress about the turkey; I promise it will be delicious. Dad is always stressing out over his job.

Stress as a Noun

noun 1. importance attached to a thing: to lay stress upon good manners. Synonyms: significance, meaning, emphasis, consequence; weight, value, worth. 2. Phonetics . emphasis in the form of prominent relative loudness of a syllable or a word as a result of special effort in utterance. 3. Prosody . accent or emphasis on syllables in a metrical pattern; beat.  4. emphasis in melody, rhythm, etc.; beat. 5. the physical pressure, pull, or other force exerted on one thing by another; strain.

The soundtrack has moved on just like time, we now have some Toby Keith playing “Beer for my Horse” which is a great tune and you can check it out on UTube, BTW as you can tell I have been all over the juke box today.  Okay back to the subject at hand “STRESS.”  Last Saturday my wife and I left the house briefly to go pick up a pizza.  We walked out of the house with the washing machine starting a load of laundry; we were gone for 25 minutes.  Now think about your home, ours is a single level.  Went we came home we saw water coming from beneath the garage door.  Stress level went to Decon 3, as the garage door opened, the water cascaded out, DECON 4, my wife jumps out of the car, races into the house and the utility room is flooded, the water is working its way down the hall, the water has seeped into the dining from by going under the wall, DECON 5 and we are at war with the water.  Within 2 minutes of coming in the house the water was shut off, but the damage done.  I spend Saturday evening thru Friday evening talking to the water cleanup company, our insurance company, the claims person, the folks that checked the washing machine 2 weeks prior to the accident, the insurance company lawyer, and the insurance company contractor who will repair the damage.  Not to mention the many levels of scheduling I had to do.  My day and week went from ho hum, to pulling my hair out stress.  It didn’t impact me, I really didn’t feel much, for 30 years I worked in that type of environment, it really had no impact on my head at all, and actually it was like old home week.  But my breathing took a beating, each day the situation, the calls, the meetings, the calls from the wife wanting updates, all played a part and my breath got shorter and shorter, by the weekend I was having issues pushing air.  That my friends is a clear result of stress.  Mentally it was no challenge, physically it abused me.  

In response to my friend’s post I wrote in part the following: “I really think it is in the makeup of the individual, their soul for a lack of a better term, in how an individual deals with stress.   Taking your example a touch further if those same two individual encountered 10 identical “stressful” situations, that there is a good chance that you could get completely different reactions from the individual depending on which situation occurred.  In some cases neither of the individuals would be affected at all, while in others both could react the same way.

To further muddy up the water, I feel that in addition to an individual’s soul an individual’s environment plays a significant role in how they react to a “stressful” situation.  Life experiences, age, sometimes their sex may have an influence, but these are all just contributing factors.

In the past year you have been pulled in so many directions, you have had so many outside influences impacting you and your world.  It is easy to see how stress can impact you.  It is easy to see how some influences impact you more than others.  And for all of these reasons it is easy to see how you could react differently.  But your own answer is clearly one of the keys “Perhaps the answer to the stress question is this:  Accept what is; make the most of every single hour of every single day; and get back on that bicycle!” “

If you notice not once did I mention the physical impact stress has on an individual, I spoke at length to the mental component but again failed to get into the physical.   It wasn’t until I came back to this post and start writing again did it dawn on me the very real impact that the stress of dealing with washer issues had on my body and my ability (or lack of) to breathe.  But my friend didn’t address how stress had physically impacted them. But you can bet in the future I will pay closer attention to stress as it relates to my breathing.

I really didn’t answer a question, I just put this out for thought, maybe as a reminder to all of us, that when we are in a stressful time not only is our head affected but so is our body.

Trust me a lot of music has played since I started this, but it has gone on long enough, so no more sidebars today on music. If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 

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How I Feel for the Week ending 3.21.14……

Well I hope all my Irish friends have long survived Monday the 17th.  Having a splash or so in my system, I quietly celebrated, and didn’t turn any shade of green.  Not being green made the week more pleasant LOL.  Today my excuse is that is that I just got a late start putting this together, and besides knowing that music will be involved. Today we are starting with a classic.  The very first time I heard 1st Vince Gill’s “Go Rest High on That Mountain” was at my Mother funeral, it made me cry that day and every time I hear it now I cry. And when my time comes this song will be featured at my funeral. I have included a link for your pleasure.   Because even songs that reach deeply into your soul can be a pleasure to hear and be touched by.   Sidebar — as much as I love Vince Gill I only have one other song of his on my IPOD, the other is A Satisfied Mind.  Now moving on to music provided by the Dixie Chicks, I am looking forward to “Not Ready to Make Nice!” it is probably one of the most heart-felt songs I have every heard.

http://www.vevo.com/watch/vince-gill/go-rest-high-on-that-mountain/USUV70500229

Last week I gave my health an overall rating of a 2.5.  When I was addressing that rating I said that it sneaking towards 2.75, well it is still sneaking towards 2.75 and if I can get any breathe back I will indeed move it to a solid 2.75, but as long as the SOB is the ruling body, the best I will rate a week is 2.5.  I have no other significant medical issues driving me.  I don’t have any aches or pains, no headaches; all systems seem to be working properly.  Though today I am beat, exhausted, sleeping with one eye open.  I was up until 2 am this morning, watching my beloved U of L barely beat Manhattan Univ in the first round of the NCAA Tournament, it’s a wonder I have any fingernails left.

In the past I have been quite willing to grade on a curve, and equally willing to change my internal scale to accommodate what the disease is doing to me.  I have decided to maintain the grading scale I had before my last hospitalization.  This is my reality, changing the scale each time I need to justify my changing health isn’t fair, and it doesn’t present an honest picture.  When I started my blog, its’ foundation was honesty, and to show how I progressed thru the illness. I have come to realize that changing the scale really isn’t the honest approach.  I suspect there will come a time in the future when a 2.5 week is a damn good week.  I might consider adding a Mental Scale, that reflects how my head is doing dealing with the disease, and other issues that I encounter as it regards to the disease.

This all came about because last week I made an off-hand remark that my brain adjusts much quicker to my disease than my body.  Folks’ there is a lot of truth to that statement.  Attitude is everything.  My attitude has carried the load, and has allowed me to press on.  Sidebar – moving on to Joe Cocker now, “I get by with a little help from my Friends.” Which folks you are, and your help does help (without the getting high part).  The fact remains for COPD or any other traumatic disease the patient’s attitude will do just as much towards their recovery or functionality as taking all the required medicines does for their body. 

Let get the vitals out of the way for the week ending 03/21/14

  • INR = 1.7 taken 02/17/14 – dosage increased to 6mg Coumadin daily

  • O2 level @ 2.5 LPM = 92/93 average O2 for the week

  • Peak Flow = 250 taken 3/20/14

  • BP 128/76 = taken 03/20/14

  • Heart rate = 108 taken 03/20/14

  • Temp = 98.7 taken 03/19/14

  • Weight = 272 taken 03/20/14 – damn it – looks like I ate the gift horse

So ends the general health aspect of my “How I Feel This Week” report for the week ending 3/21/14, moving now to the word of the week discussion aspect.

As we shift to the word of the week, I am still hanging with Joe Cocker, but I can say that George Thorogood is next to hit the imaginary turntable.  We are starting with the live version of “Johnny B. Goode”, and will listen to some “Bad to the Bone” (Terminator 2), then off to “I Drink Alone,” most likely followed by “One Bourbon, One Scotch, One Beer,” to we see a theme developing LOL. 

This week’s word is PEAK FLOW.  The book definition will be taken from Wikipedia.

http://en.wikipedia.org/wiki/Peak_flow_meter

The peak expiratory flow (PEF), also called peak expiratory flow rate (PEFR) is a person’s maximum speed of expiration, as measured with a peak flow meter, a small, hand-held device used to monitor a person’s ability to breathe out air. It measures the airflow through the bronchi and thus the degree of obstruction in the airways.

Function — Peak flow readings are higher when patients are well, and lower when the airways are constricted. From changes in recorded values, patients and doctors may determine lung functionality, severity of asthma symptoms, and treatment options.

First measure of precaution would be to check patient for signs and symptoms of asthmatic hypervolemia. This would indicate whether or not to even continue with the Peak Flow Meter procedure. Measurement of PEFR requires training to correctly use a meter and the normal expected value depends on a patient’s sex, age and height. It is classically reduced in obstructive lung disorders such as asthma.

Due to the wide range of ‘normal’ values and high degree of variability, peak flow is not the recommended test to identify asthma. However, it can be useful in some circumstances.

A small portion of people with asthma may benefit from regular peak flow monitoring. When monitoring is recommended, it is usually done in addition to reviewing asthma symptoms and frequency of reliever medication use.

When peak flow is being monitored regularly, the results may be recorded on a peak flow chart.

It is important to use the same peak flow meter every time.

Folks, this ends the technical aspects of the PEAK FLOW meter and measures. This was taken completely from of Wikipedia, but a quick search of PEAK FLOW on line will net you dozen’s inputs and you can feast upon them.  I chose this word this because the Peak Flow Meter is just one of the tools I use to monitor my health.   I am not saying run out and get one, I am suggesting that you talk to your doctor and see if this is a tool t that you should use in monitoring your health.  And as you’re well aware I am an advocate of you being involved in your health, the decisions, and the directions to be taken.  Of course you are consulting your Doctor at each stage of the way, but being aware of the things going on in your body are very helpful.

When I talk to Doc Lungs, I can say on this day my PEF was such and such, and on this day it was so and so.  I have even come to stating the conditions (weather or inside climate, pollen, things like that) if I find it particular high compared to my baseline.  LOL I don’t even know if Doc Lungs cares but he sure acts like he does.  Sidebar, I now have Jeff Beck with Rod Steward playing “Shapes of Things.” 

Smiling, it takes so much time to write this because of all the breaks I take to play air guitar, and sing along.  Lord so I sing terribly LOL, but I am home alone and no one can hear.  I will bring this to an end with Jim Hendrix’s “(I’m Your) Hoochie Coochie Man” 

If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 
 

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How I Feel for the Week ending 3.14.14……

Folks I hope you have had a pleasant week, mine has been okay, actually fairly good.  I have all manner of stuff going on today, so I expect this well be done sometime in the late afternoon.  As I have been prone to do recently, making a musical out of my posts, there will be a multitude of songs I will be referencing as I write this.  Our 1st selection comes from The Byrds, with Roger McGuinn, (for the uninformed) he was the frontman for the Byrds (I am such a music snob sometimes LOL).  I have listened to 3 selections including Mr. Tambourine Man and Turn, Turn, Turn.  But I will soon be listening to his solo album “Back from Rio” with King of the Hill, and Someone to Love both I consider to be his best work.  I will say this for Roger, he doesn’t waste a lot of time writing happy songs, LOL.  Below is the link for King of the Hill. Enjoy!  BTW that is Tom Petty singing backup.

http://www.youtube.com/watch?v=Jr1ozA6GeRs&list=AL94UKMTqg-9DT-_bHVz2kWurO6uOHuHpx

Last week I gave my health and overall feeling a 2.5 rating.  I am sticking with that score for this week.  While I feel marginally better, I don’t know if it is my head or my body that is taking the credit for that upward push.  Each day I seem to be redefining, what SOB (shortness of breath) means.  I have been diagnosed and dealing with COPD for going on 6+ years now.  As I have said countless times, it is not a disease where you look sick, but you really are.  SOB is one of the very few visible indications of the illness.  Right now if you were to watch me do just about anything sedentary, you would never have a clue I was sick.  Sometimes even that is a blessing.  But if you were the fly on the wall and followed my movements about the house as I do my Domestic King administrations, you would see the very real impact of COPD.  Seeing me stop to grasp onto a table or counter, stopping short of completing any tasks without multiple small breaks, or stretching my neck to catch a breath, are all the indicators you need. It FU…king sucks. My appetite is off a bit, which would account for a bit of my recent weight lost. There have been no changes to my current medicines and my only medical appointments for next week are with Doc Lungs, and my monthly IVIG treatment.  Other news includes that the gut retching cough seems to have to an end, with now only a simple cough, which is non-productive.

Let get the vitals out-of-the-way for the week ending 03/14/14

  • INR = 2.6 taken 02/24/14
  • O2 level @ 2.5 LPM = 93/94 average O2 for the week
  • BP 118/64 = taken 03/12/14
  • Heart rate = 102 taken 03/13/14
  • Temp = 98.4 taken 03/14/14
  • Weight = 269 taken 03/11/14 – I am eating less, and that’s the lowest it’s been for quite some time, I’m not looking a gift horse in the mouth.

So ends the technical aspect of my “How I Feel This Week” report moving now to the word of the week discussion aspect.  I have listened to a variety of songs by the Byrds, Roger Mcguinn, The Nashville Teens, and Zombies clearly it has been OLD SCHOOL today. 

As we shift to the word or phrase of the week, my music selections have change as well.  I am in a particular mood right now, so it seems a few selections from Rob Zombie seem appropriate. This week’s word or phrase is Documents and Documentation.  The reason for these words is quite simple, you need to cross the “T”s and dot your “I”s.  This advice isn’t just for the terminally ill, it isn’t even for the sick, it’s for each and every one of us.

As I have been told a million times you never know when your end is coming.  To protect yourself and those you love, you need to take care of the paper work.  So with that said, I will provide the book definitions for Document and Documentation, and then offer my 7 cents (up because of inflation).

Our definition of Document is brought to us courtesy of Yahoo at dictionary search yahoo.com

https://search.yahoo.com/search;_ylt=AkydiHiX_sDa7BSky2P2TxGbvZx4?fr=yfp-t-901-s&toggle=1&cop=mss&ei=UTF-8&p=document%20definition

Document Definition — n. noun – 1. A written or printed paper that bears the original, official, or legal form of something and can be used to furnish decisive evidence or information.  – 2. Something, such as a recording or a photograph, that can be used to furnish evidence or information. – 3. A writing that contains information.

Document Definition – tr. verb – 1. To furnish with a document or documents. –2. To support (an assertion or claim, for example) with evidence or decisive information. – 3. To support (statements in a book, for example) with written references or citations; annotate

Documentation Definition – n. noun – 1.  The act or an instance of the supplying of documents or supporting references or records. – 2. The documents or references so supplied. — 3. The collation, synopsizing, and coding of printed material for future reference.

I truly hope that me adding these book definitions to the words I choose to talk about is not overly offensive, I realize you’ll are very very smart, probably  smarter than me, but writing them out allows me to focus and not stray from my objective.  So if I have offended you, please understand it is more for me than you.

I am going to list the base line documents that I have signed, sealed and stored in a place that is easy to access in the case of an emergency.  Ease of access is really my key point in this.  You, your loved one, your spouse, significant other, your kids, care giver, and any other individual that is important to you must know where these documents are, and they need to be easy to access.  It does no one a lick of a bit good, if you are the only one that knows what documents you have, and that you buried them under a rock in the backyard.    — This has spilled into Saturday so now I am a day late and a buck short, but it will soon be wrapped up. — Music selections start today with selections brought to you by Melissa Etheridge, off her “Greatest Hits! The Road Less Traveled” she is another artist I am extremely fond of, and her rendition of Refugee ranks up in my TOP 100 favorite songs.

I have a 3 ring binder in my office that lists each document and in many cases the original of the document.  In the case of an emergency you just walk into the office and grab the “Bill’s Emergency Documents & Stuff” book (btw—this is a living document and as information changes so I make the appropriate changes to the book — you would need to get into this habit as well).  This book contains the following documents: A copy of my will, my DNR (Do Not Resuscitate Order) for the State of Florida, my OPM (Ofc of Personal Management) retirement handbook (which provides the needed instructions on who to contact and when to contact them after my death), my durable Power of Attorney, cover page and POC (point of contract) for each life insurance policy I have.  The list of documents also contains my personal account information for my ITunes and Barnes and Noble accounts. It also contains a list of my signons and passwords for the digital world I live in.  It also tells my wife which are important to me (or her) and why at the end of my retirement.   As I said this is a living document and changes and additions will be made as needed and as I get closer.  This is not meant to be an all-inclusive list; your list of documents will be slightly different.  Also if you’re reading this and you think I missed something please send me a note.

Before we get into Documentation, the music has move to Peter Gabriel, with a couple short stops with Phil Collins, Travis Tritt, Nickelback (surprise) and Muddy Waters.   It is incumbent upon you to leave behind all the useful documents that run your household.  Names and telephone numbers for the various vendors you use such as; telephone company, Cable provide, the handyman, lawn care provider, and on and on, you get the point.  If you’re anal retentive like me, you have all the warranties for the things around the house; stove, TV’s, ceiling fans, wine cooler, and on and on, again you see the trend. You’re other half has come to depend upon you over the years to have that information available, for the most part they don’t even have a clue, so setting it aside in some neat container will make their life much easier.  This folks is not repeat not gender specific.  Each individual in a relationship collects, maintains, updates, and disposes of household information on a regular basis.  One of them may do 99 percent of the family finances with the other pretty much clueless.  So when you start to gather your documentation remember this, and package in a neat and orderly way to help your other through what will be a difficult time.  I just spoke to finances; it would make things a ton easier if there were a whole separate binder just on checking, saving, investments, and all other money matters.  If the bulk of your banking is done electronically, and you’re doing 99 pct (like my wife does) detailed instructions should be provided so your partner doesn’t have issues getting into the accounts after your gone.

Again this week I have managed go on and on.  So with Garth Brooks filling my headset, I will bring this to an end.  If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 

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How I Feel for the Week ending 3.07.14……

I am beginning this weeks’ report at 1pm and I know I will have a ton of interruptions between now and when I finish, so I can’t nor will I say this will be complete by COB today.  Music will be brought to you today courtesy of Nickelback, truly one of my go to bands. Because of the known numerous breaks I will have today, the music selections and bands will be changing of course I will keep you updated. BTW I have 44 Nickelback songs on my IPOD, so I doubt if I run out.

Last week after I hymned and hulled I gave the week a 2.5.  I feel that is still an appropriate rating for this week so for those keeping score this week is a 2.5.  There has been no significant forward movement, and rather than just change the scale, I will keep the rating. The coughing has all but stopped with just time a day were it is a major factor and when I cough it is not productive. As ugly and nasty as it sounds the best cough for a person with COPD is a gut retching deep nasty cough that is super productive.  Smiling when I cough like that I am bragging not complaining.  Last week I complained about barely holding my own.  Even with such little progress I am managing to hold my own.

Let get the vitals out-of-the-way for the week ending 03/07/14

INR = 2.6 taken 02/24/14 — next check 3/17/14

O2 level @ 2.5 LPM = 92/93 taken numerous times this week

BP 122/74 = taken 03/05/14

Heart rate = 99 taken 03/05/14

Temp = 97.6 taken 03/05/14

Weight = 272 taken 03/07/14 – that’s 2 lbs less than last week HOORAY

There has been only a slight change in my medicines.  I am no longer using Cefepime via IV so the Mediport has been cleaned and is now back in standby mode. -–interruption 1 —  Still working Nickelback.  LMAO I wonder what the guys in Nickelback think should they hear that one of their biggest fans is a 64 year old fart.  Who really listens to and loves the lyrics.

This week I had appointments with both Doc Infectious and Doc Lungs.  It seems that whatever bug I have that is currently managing to crap in my lungs is now at bay, at least for the time being.  The normal cracklings, gurgling, and other unique noises my lungs make aren’t nearly so bad this week. The extremely shortness of breath is being attributed to the worsening of my COPD, (brought on by the last exacerbation) and this is expected.  It is really part of the process of being ill. Do I like it when my doctors concur that the disease is winning, of course not, but folks it is what it is. And again the process mandates this is to be expected. Sidebar note, if you get a chance listen (closely) to Nickelback’s “Kiss it Goodbye.” Additional sidebar, maybe bragging about liking this song in this part of my report was inappropriate, but’s a great song that happens to be playing now. Both Doc Lungs and Doc Infectious are realistic men, their staffs are realistic, but most importantly they have my best interests at heart.  We are staying the course they feel is in my best interests.  But with any condition or disease you must be prepared for changes in condition and direction.  That’s a long way of saying I was expecting the SOB to get worst, and I am somewhat prepared.

So ends the technical aspect of my “How I Feel This Week” report moving now to the word of the week discussion aspect.  I have gone thru about 15 Nickelback songs in a row, many I have heard dozens of time, and I am still enjoying it, but as we move into the word or phrase of the week phase of my report, I believe I will listen to Jimi Hendrix for a bit.

The word I have chosen for this week is “Support.”  As with last week the definition is being taken from the Merriam-Webster.com Dictionary.  I will be providing an edited version of the word, but you can go to the link below to get the “complete” definition.

As defined at http://www.merriam-webster.com/dictionary/support

1 sup·port  transitive verb \sə-ˈpȯrt\ : to agree with or approve of (someone or something),  to show that you approve of (someone or something) by doing something,  to give help or assistance to (someone or something)

Full Definition of SUPPORT— 1:  to endure bravely or quietly : 2a (1) :  to promote the interests or cause of (2) :  to uphold or defend as valid or right :  advocate <supports fair play> (3) :  to argue or vote for <supported the motion to lower taxes> b (1) :  assist, help <bombers supported the ground troops> (2) :  to act with (a star actor) (3) :  to bid in bridge so as to show support for c :  to provide with substantiation :  corroborate <support an alibi> 3 a :  to pay the costs of :  maintain <support a family>  b :  to provide a basis for the existence or subsistence of <the island could probably support three — A. B. C. Whipple> <support a habit> 4 a :  to hold up or serve as a foundation or prop for b :  to maintain (a price) at a desired level by purchases or loans; also :  to maintain the price of by purchases or loans 5:  to keep from fainting, yielding, or losing courage :  comfort 6 :  to keep (something) going

2 support  noun : the act of showing that you believe that someone or something is good or acceptable : approval of someone or something : the act of helping someone by giving love, encouragement, etc. : help that is given in the form of money or other valuable things

Full Definition of SUPPORT  1a :  the act or process of supporting :  the condition of being supported b :  assistance provided by a company to users of its products <customer support> 2 :  one that supports —often used attributively support staff> 3 :  sufficient strength in a suit bid by one’s partner in bridge to justify raising the suit.

Buckets Loads
Bucket Loads

I got this card in the mail this afternoon, isn’t surprising the timing of things.  I was writing about support, and guess what, I got a bucket load.  I have no idea who Liam is, but I can’t thank him enough.  It proves you never know when or how support will find you.

It is now 730am on the morning of March 8th, so clearly I didn’t make the self-imposed COB deadline, though I did listen to some Hendrix last night.  I have been thru my morning meds process, I have nebulized the stuff that makes my beard sticky and glues my eye lashes together, so thru squinty eyes I am working to complete this post.  I have chores today, and I must watch the UofL vs UConn basketball game at 2pm EST.  I am just saying this may end up a weekend report. Imagine all the extra music you will hear me talk about.  To fire my butt up, and to really get my motor running we are starting the day with some AC/DC.

Folks isn’t support a wonderful word.  It is far reaching, and has thousands of applications, it can be big or little, it can be a word or a million bucks.  Support will allow itself to be what you YOU, need it to be.  Support can come from millions of directions, some expected some totally unexpected.   But as wonderful as it is, one of the most difficult aspects of support is realizing when YOU need it.  And friends don’t be offended with me saying YOU, when we know I really mean ME.  But it does also apply to YOU as well.

Support will be one of the key cornerstones on how we progress through our illness.  It will come in stages, and you will find it in many places. It will not be a bad thing to knowledge that you need some support.  You will see support in many ways; spiritual, physical, that quiet moment, the guiding hand, a smile or look even direction.  It will come from people you know and trust, to complete strangers and all points in between. As your disease progresses you will find the smile you get from the nurses aid to be a bit more genuine, their touch a little softer, you’re doctor or team of doctors will  be there for you, clearly with your best interest at heart.  At your pharmacy, the pharmacist’s smile is a touch warmer and maybe the service a touch faster.  The clerk at the grocery store will unload your basket with a genuine smile on their face. Unexpected people will open doors for you. The neighbor will drag your trash bin back to your garage and not even take credit. And this takes place in the beginning, and will grow from there.  For the longest of times I have tried to man up and do it all myself, standing my ground refusing any and all support and help.  But folks as it gets more difficult you can’t do it all yourself.  And as I have done you will find graceful ways to accept the support you get.  I also suspect the further the disease progresses the more willing and graceful I will be in accepting both support and help.  I write this to suggest that you think about this as well.  The folks offering their support and help are doing because they care, it is not being done out of pity.  Try to remember that.   Yes sometimes it will be too much, but trust me there will be a time when it isn’t.

I have managed go on and on.  So with Genesis playing strongly in the background I will bring this to an end.  If you have any questions, concerns, comments, or ideas please feel free to ask away. I hope you have a great weekend, and I will be posting again soon.  Take care, Bill

 

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End of Retirement

My blog “Dealing with COPD,” is a forum I use to write about the zillion of things that go on in my head regarding COPD.  I use this forum in the ways I want, saying things that I feel need to be said.  I talk about my health, the medicines I take, I talk about specific words and phrases, I talk about what the disease is doing to me, my family and my friends.  I also spend a great deal of time talking about my symptoms, my daily battles, and from time to time about the depression it sometimes brings.  Rarely do I actually say that I am dying, or that my death is pending, because as strange as it may sound, death and dying rarely cross my mind. Also I don’t bring it up because rarely do dwell on it, and I don’t want my readers to either. 

The last thing in the world I want to do, while talking about myself, while encouraging others to be strong, to be their own advocate, is to be a downer, and bring the “D” word into the conversation. Because I don’t need to, I don’t need to be that reminder, because one thing we all know is that in time the disease will win. My readers who have COPD or some other terminal disease deal with their illness and the fact it is terminal in a way that is comfortable for them.  Some take comfort in what I write; some have given me comfort and strength in how they deal with it.

Many of you have gotten to this point in the post and are saying “Jesus Bill, for something you don’t think about, for something you don’t dwell on, for something you don’t want others to waste a lot of time and energy on you sure have yapped enough about it today!” LMFAO (for the abbreviationally (made up word) challenged figure it out), I will get to the point soon.  Many of you already know if it can be said in 200 words, I will find a way to say it in 500.

On to the point, recently my wife has been concerned with her financial future after my departure.  I retired after working for 40 years.  I have a defined retirement benefit plan that includes a defined benefit for my wife when I die.  Laughing, I remember when we had our 20th anniversary how she bragged that she was fully vested in my retirement.    Indeed she is, for a million years (at least 20) I have been telling her that she would be fine, that she had no worries, that between my retirement and her SS, she was pretty much set.  But, I am just a husband so what do I know.  So anyway we contacted a Financial Planner (David), to whom we provided a bunch of numbers.  After David at an opportunity to review those preliminary numbers we had a teleconference.  Many many many things were discussed, David was advised of my health situation, and then we talked some more.  At some point we were discussing where we needed to go (financially) and how/what needed to be done to get there. But David started to verbally dance, he had a question he needed to ask, but didn’t know how to ask, before he could start making a final analysis. Finally after a lot of soul searching on his part, he said “Bill, I have to ask you, just how much time do you have left?” David did this as delicately as he could and I responded.  “David I will tell you what the Doctor tells’ me when I ask that question, he says 3 to 5 years.”  

The teleconference soon ended with David telling us he would have formal draft numbers to us early the next week. But David announced that he had to say one important thing before he hung up.  He said, Mrs. Hamilton, you don’t need to worry, between the annuity Bill’s retirement leaves you and your SS, you are set. To which I looked my wife dead in the eye and said “Told You!”  BTW I have said “told you” several times since that teleconference.  I think it is getting kind of old and I may have to shelf it for a while.

I am finally getting to the point.  When the draft document came in, my wife and I reviewed the potential options.  But as I was looking something caught my eye and just made me grin and even chuckle to myself.  There is a line item on the financial documents that addresses me, and the shift in financial structure upon my death, it says “Bill Hamilton – end of retirement,” at the three and five-year points.  That my friends is one of the coolest ways I have ever heard dying addressed “end of retirement,” of course it doesn’t work for everyone, but it sure works for me.  So I am just warning you now that from time to time, I may refer to my “end of retirement.”

I had shared this “End of Retirement” with a blog friend, her immediate response was, that is a good euphemism! 😉 (the smiley face is from her), which as you can tell I completely agree.  I threatened to write about it, and I just did. 

Folks I hoped you enjoyed this little story it’s one of the few I have written recently that didn’t focus on me being under the weather.  If you have any questions, thought or concerns pleases feel free to send them, and as always your comments are always welcome.  Take care, Bill

 
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Posted by on March 2, 2014 in Grandpa Stories, Humor, Observations, Ramblings

 

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