RSS

Tag Archives: depression

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

 

Tags: , , , , , , , , , , , , , , ,

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.

 
14 Comments

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

 

Tags: , , , , , , , , ,

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

 

Tags: , , , , , , , , , , ,

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.

 

Tags: , , , , , , , ,

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

 

 

Tags: , , , , , , , , , ,

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

 

Tags: , , , , , , , , , ,

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

 

Tags: , , , , , , , , , ,

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

For the week ending 04.04.14 I am actually starting this post in a timely manner, that’s not to say that it will be finished in a timely manner.  The memory of Louisville’s lost to Kentucky has not completely faded and I am not watching anymore of the NCAA tournament in fear that Kentucky may actually win if I watch. I am just saying that my 2 favorite college basketball teams are Univ of Louisville and any team beating the univ of kentucky.  Sidebar, we are starting today with Eric Clapton, from his blue’z times.  SOB continues to be the overriding health issue, also this week I felt I was in the beginning stages of another exacerbation and I was greatly concerned (and still am to somewhat lessor degree).  I did see the nurse yesterday, my lungs are clear, and the drippy nose, the nagging non-productive cough and the scratchy eyes are the result of the damn pollen.  But as anyone with COPD or for that matter any respiratory ailment will attest, these symptoms always cause great concern. My general health is okay, no aches or pains and I survived the dentist last week without even getting a lecture. As stated the most significant issue of the week has been the pollens, and the concern that caused me. Given all the relevant information I am going to rate the week a strong 2.5, or to please some of my readers a very very weak 2.75, you choose.  It’s really only slightly down from last week, but laughing it has been a difficult couple weeks.  All things considered when I woke this morning, I knew I was going to have a GREAT DAY!

Last week I spoke briefly of attempting to add mental health into the evaluation for the weekly rating and I am still pondering that. Sidebar, this talk of mental health has had me reach for Sarah McLachlan, go figure (but she has such a beautiful voice).   As most of you have long figured out I am the eternal optimist, and that alone has helped me so much over my lifetime, but even more so in recent years since I have fought this battle with COPD.  If my weekly rating were solely based on mental health (attitude) they would be around 4.5 on a regular basis, because to my knowledge there is only 1 perfect individual. 

Let get the vitals out of the way for the week ending 04.04.14

    • INR = 2.0 taken 03/24/14 – next INR reading scheduled for 04.08.14
    • O2 level @ 2.5 LPM = 96 taken on 04.04.14  
    • Peak Flow = 220 taken 04.04.14
    • BP = 127/86 taken 04.03.14
    • Heart rate = 108 taken 04.04.14
    • Temp = 97.9 taken 04.04.14
    • Weight = 271.5 taken 04.03.14

So ends the technical aspect of my “How I Feel This Week” report for the week ending 4.04.14, moving now to the word of the week discussion aspect.  This week I have chosen Attitude. The definition used in today’s post comes to us via http://dictionary.reference.com/browse/attitude

ATTITUDE — noun —1. manner, disposition, feeling, position, etc., with regard to a person or thing; tendency or orientation, especially of the mind: a negative attitude; group attitudes.  2.position or posture of the body appropriate to or expressive of an action, emotion, etc.: a threatening attitude; a relaxed attitude.

As much as I would love to share my attitude with everyone facing the challenges this and other terminal diseases brings to you, I can’t but I can and will be your biggest cheerleader, I can and will be the one patting you on the back telling you what a great job you’re doing and to keep it up. Sidebar, moving swiftly away from Sarah we are now enjoying some SRV (Stevie Ray Vaughan) “Crossfire.”   I will be there to pick you up when you fall.  I also believe that attitudes can be changed. But like any other bad habit, changing your attitude takes work.  Smiling I have an abundance good attitude and if I could I would give you some of mine, but (smiling) you really need to want it.

As you know attitude comes from within. But no matter what your, going in attitude is, I think it is something you can improve.  When I played golf I sucked, oh I wasn’t terrible (well maybe a bit terrible), but it didn’t matter to me if I shot 83 (my career best), or 120+, I always found one shot that was good enough to bring a smile to my lips and reason to come back again.  A dear friend on the DS group used to post every day the one thing she found that gave her a reason to be thankful.  By her admission it helped her greatly. I always admired those posts.   Finding that little thing, or that point to be happy are small steps, but they build and build, and as they do so, so does your good attitude.  Clearly this is an over simplification, but it is a start.  But conversely if you have a bad attitude, no matter what you do that attitude shows thru, it shows in your conversation, it shows in your walk, it shows in your illness.  Sidebar, we have moved on to Toby Keith’s “How do you like me now?” We are finishing up our time with Toby with “Weed with Willie.”  And have moved on to Aretha Franklin, Brooks and Dunn, Matchbox 20, and Creed. Maybe I have spent so much talking attitude because mine has been down slightly these last 2 weeks but I see it on the rebound, just talking about it in this manner is a boost. Sidebar, I have my music on the “Random” selection I just went from Lewis Black to AC/DC to Five Finger Death Punch, tell me that won’t perk you up.  Of course you do need to like this stuff!  Okay okay, back to the point, Attitude will carry you.  And you don’t even have to be sick.  A smile and polite word will always get you more than a displayed crappy attitude.  If your attitude needs correction, take it in small steps.  Cause folks notice, 1st curb the old, heck it might even do you good to admit you know you have a shitty attitude and you are working to change it, so a little patience during the process will help. And yes during the change you will display some of that old attitude, smile acknowledge it, and keeping working on it.   If you have a good attitude great!! Smiling we need to work on that as well.  I just think the process is easier, if you’re starting with a good foundation.

Okay folks, most of you are saying he is just typing to be typing.  I will bring this t o an end with the Eagles blasting away.  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

 

Tags: , , , , , , , , , ,

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

 

Tags: , , , , , , , , , , , , ,

How I Feel for the Week ending 02.21.14……

I hope everyone is okay today and this week.  The jukebox is open and today’s post will be brought to you courtesy of Match Box 20.  The week has been non-productive in so many ways.  I have made no significant progress, the coughing which is semi-constant is productive, and 2 times a day I seem to reach into the depths of my lungs to find that truly gross shit and I have a massive coughing attack which brings most it up.  This a good thing, but I would have hoped the coughing would have eased up a bit, but more importantly, I would have hoped that with all the drugs I have had these last 3 weeks that the product would be less offensive.  I am having headaches that I don’t normally have and extra strength Tylenol is not effective.  The SOB (shortness of breath) is kicking my butt, and being honest I am embarrassed by how hard it has hit me.  I did follow-up with Doc Infectious on Tuesday when I had my monthly IVIG treatment.  We talked and I got to spit in the cup again, and we added another antibiotic (Zyvox 600mg 2x) to the mix.  While holding steady with the Merrem IV and the TOBI (nebulized).

For all the reasons stated above I am going to give this past week a 2.25, and that is a stretch.  While I seem to see slight improvements, for every positive I’ve seen, I am finding 1.5 or 2 negative ones.  This coming week I see Doc Head and Doc Lungs on Monday and on Tuesday I see Doc Infectious. This brings us to this week’s word, Patience which I will get to in a moment.

Let get the vitals out of the week ending 02/21/14

NR = 3.5 taken 02/19/14 – outside of therapeutic — my medications have been adjusted to get this number down below 3.0

O2 level = 93 taken on 02/21/14

BP 114/62 = taken 02/19/14

Heart rate = 94 taken 02/21/14

Temp = 97.1 taken 02/19/14

Weight = 264 taken in hospital before discharge 02/11/14 — I have looked at the scale in the bathroom several times since last week and it repeatedly says “Stay the F…. off me for the time being!” I am heeding this advice.  While I don’t think I have gained much (my appetite has sucked), so I am eating because it is required not for enjoyment. 

So ends the technical aspect of my “How I Feel This Week” report moving now to the emotional discussion aspect.  BTW I have listened to 12 Match Box 20 songs getting to this point.  Rob Thomas has one hell of a voice.  I am just saying.   Moving now to SRV (for the uninformed Stevie Ray Vaughan) I have only about every song he has recorded LOL.

So as I stated earlier today’s word is “Patience.” Over the years I have heard many phrases regarding “Patience” such as; the patience of a saint, or Patience is the greatest of all virtues, A handful of patience is worth more than a bushel of brains, and Patience is the companion of wisdom, to name a few.  Whenever someone approaches me to explain why there is a minor or significant delay, I ask if I look impatience, and if I do to forgive me because I have patience.  And as I have aged I truly believed I had developed a level of patience I never had as a child, kid, teenager, young adult, and even early adult. In review I can’t even count the times I have shown true patience.  In reviewing the definition of Patience as provided I truly believe that 1, 2 and 3 clearly had me in mind when this dictionary was written. 

Patience As defined by Dictionary.com.

Pa-tience – Noun

1. the quality of being patient, as the bearing of provocation, annoyance, misfortune, or pain, without complaint, loss of temper, irritation, or the like.

2. an ability or willingness to suppress restlessness or annoyance when confronted with delay: to have patience with a slow learner.

3. quiet, steady perseverance; even-tempered care; diligence: to work with patience.

4. (Cards chiefly British ) solitaire (  def 1 ) .

5. Also called patience dock. a European dock, Rumex patientia,  of the buckwheat family, whose leaves are often used as a vegetable.

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

Setting the stage in this manner; CLEARLY I DON’T KNOW MY ASS FROM LEFT FIELD about Patience. LOL LOL.   I was in the hospital for 9 days suffering a serious exacerbation of my COPD.  Throughout my hospital stay I was given an extensive array of drugs and breathing treatments, all in hopes of getting me better.  After 9 days I was sent home with a continuation of the drug therapy, told to rest, take it easy, and to not rush things.  I don’t think in fairness I listened to a friggin word.  COPD is complicated no exacerbation is like the one before or the one after.  Each has its’ own regiment of drugs and treatment, and for these to work it takes PATIENCE !!!  Why in the world I can’t get this thru my thick head is beyond me.  I get up on my soap box and preach and preach, and sometimes I don’t bother to listen to my own words. Hell last week I said, and I quote “I know that I am still in the recovery mode, and that it will take a couple of weeks to get back to wherever I am going to get back.”   So having been V8 slapped in the head today, I realized I need to chill, relax, take it easy and let the medicines do their job.  I can’t hurry it, bitching about won’t get me better sooner, I have to let nature and trust my Doctors to do right by me.  I share this with you to remind you that when your ill, you to have to have patience, you as well need to listen your doctors, you need to take all your medicines, and follows instructions. Just as I have to. I know it is easy to preach about because I have, now I am going to sit in the front row and follow my own instructions.  Please, the next time you are sick please try to remember this post, it may save you a ton of headaches and anxiety, maybe more.

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

 

Tags: , , , , , , , , , , ,

A COPD Video — A good death

As you know my blog is about COPD a disease I suffer from.  Some of those that follow or read my blog from time to time also suffer from the disease or they may know or love someone who does.  This video is for all of us.

I have never made the disease out to be pleasant, I haven’t highlighted any good points because there aren’t any, but I rarely take a negative position.  This is a much watch video.  It isn’t gross, but it isn’t pleasant either. This is 100 percent about reality.

One of the individual’s in the Daily Strength Discussion Group to which I am an active member shared this video.  It is touching, it is moving, and it is in the future for many myself included. It makes some very strong points, and it is something that needs to be shared, talked about, and thought about.

It will take 30 minutes of your time, but it will be a very worthwhile video.  Please consider it.

http://vimeo.com/39258619

As always if you have any questions, thoughts, concerns or comments please feel to ask me.  Please take care, Bill

 

Tags: , , , , , , , , , , , ,

How I Feel The Week Ending 01/31/14….. Living with COPD

Hello Friday, here comes the weekend and the Super Bowl.  Watching the Super Bowl is an annual event, and I have truly enjoyed many over the years, but I would be lying if I said the commercials weren’t important to me.  So bring on the Commercials and hopefully the game won’t get in the way. 

 

That’s quite enough levity for my post today, not that I won’t sprinkle more in as I pound away on the keyboard.  Let us proceed and get the vitals out-of-the-way.  I have not been in a Doctor’s office in a couple of weeks to check my blood pressure, but I would say because I feel fine that there is no significant change to it today.  My resting heart rate today is 104, and my oxygen concentration is 95 percent again in a resting mode. My weight depending on time of day is maintaining a weight higher than I want, but is tracking downward.

 

This week I have had only one doctor appointment and that was with Doc Head.  I don’t know how one measures progress when the examination of your head and its contents are what is being measured.  Is relief a measurement? Is getting it off your chest a measurement? If you cry or smile are they measurements of progress or lack of progress?  I assume the fact that when I walk out of her office I actually feel better is the true measure.  I have asked her point-blank, if I was crazy (others have thought I was LOL) and she has told me NO, I am not crazy, so for all you doubters out there, I have got a professional opinion, so there! LOL LOL

 

Now on to the heart of the matter about how I feel this week.  I am giving the week a 2.75.  I feel just a bit off-center and have felt this way all week.  The SOB and the physical limitations that come with it has been real bad, and the cough (while somewhat productive), damn just will not subside (I do control it somewhat with meds).   I am not having any of the early signs of and exacerbation or anything I can point at directly and say “Oh, this is why,” and that is a good point. But it is the cumulative total of things going on inside me that makes me rate the week 2.75.   

 

This week’s word is; Infusion Treatments.  I have talked endlessly about my monthly IVIG treatment and have spoken countless times about the post hospitalization IV treatments that are a part of my world. But I don’t believe I have gone into any real detail.  Yes I have whined about being a difficult stick, and that the nurses have had to prod me several times each month to successfully get the needle into my arm to start the infusion.  But to actually talk about it and share the benefits I haven’t. 

 

I have chosen two “book” definitions for Infusion Therapy (which I refer to as Treatments) one from Wikipedia, and the other taken from NHIA (National Home Infusion Association).  I have included the links to both of these definitions for your further use.  Normally I cherry pick the information to a great extent, today not so much.  I do suggest you go to the sites to get further information.

Infusion Therapy (as taken from Wikipedia, the free encyclopedia)

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

In medicine, infusion therapy deals with all aspects of fluid and medication infusion, usually via the intravenous route. A special infusion pump can be used for these purposes.

Treatments — Infusion therapy involves the administration of medication through a needle or catheter. It is prescribed when a patient’s condition cannot be treated effectively by oral medications. Typically, “infusion therapy” means that a drug is administered intravenously, but the term also may refer to situations where drugs are provided through other non-oral routes, such as intramuscular injections and epidural routes (into the membranes surrounding the spinal cord).

 

Until the 1980s, patients receiving infusion therapy had to remain in an inpatient setting for the duration of their therapy. Heightened emphasis on cost-containment in health care, as well as developments in the clinical administration of the therapy, led to strategies to administer infusion therapy in alternate settings. For individuals requiring long-term therapy, inpatient care is not only expensive but also prevents the individual from resuming normal lifestyle and work activities.

Infusion Therapy as Taken from NHIA (National Home Infusion Association) http://www.nhia.org/faqs.cfm

What is infusion therapy? —Infusion therapy involves the administration of medication through a needle or catheter.  It is prescribed when a patient’s condition is so severe that it cannot be treated effectively by oral medications. Typically, “infusion therapy” means that a drug is administered intravenously, but the term also may refer to situations where drugs are provided through other non-oral routes, such as intramuscular injections and epidural routes (into the membranes surrounding the spinal cord).

 

“Traditional” prescription drug therapies commonly administered via infusion include antibiotic, antifungal, antiviral, chemotherapy, hydration, pain management and parenteral nutrition.

 

Infusion therapy is also provided to patients for treating a wide assortment of often chronic and sometimes rare diseases for which “specialty” infusion medications are effective.  While some have been available for many years, others are newer drugs and biologics.  Examples include blood factors, corticosteroids, erythropoietin, infliximab, inotropic heart medications, growth hormones, immunoglobulin, natalizumab and many others.

 

What diseases are treated with infusion therapy? — Diseases commonly requiring infusion therapy include infections that are unresponsive to oral antibiotics, cancer and cancer-related pain, dehydration, gastrointestinal diseases or disorders which prevent normal functioning of the gastrointestinal system, and more.  Other conditions treated with specialty infusion therapies may include cancers, congestive heart failure, Crohn’s Disease, hemophilia, immune deficiencies (this is the condition that I fall), multiple sclerosis, rheumatoid arthritis, and more.

By far, the major home infusion therapies are IV antibiotics, prescribed primarily for such diagnoses as cellulitis, sepsis, and osteomyelitis; other diagnoses include urinary tract infections, pneumonia, sinusitis and more.

 

What is specialty infusion therapy? — “Specialty infusion therapy” is a term in use when “specialty” infusion medications are administered.  The distinction, if any, between the meaning of “specialty infusion therapy” and “infusion therapy” is related to the context of their use.  This para can be seen in its entirety on the defined site.

 

Why are infusions performed at home? Until the 1980s, patients receiving infusion therapy had to remain in the inpatient setting for the duration of their therapy.  Heightened emphasis on cost-containment in health care, as well as developments in the clinical administration of the therapy, led to strategies to administer infusion therapy in alternate settings.  This para can be seen in its entirety on the defined site.

 

This concludes the “by the book” technical/medical aspect for the word of the week “Infusion Therapy,” and I will now proceed to give it to you as I see it.

I have been getting Infusion treatments for just at 2 years now.  My being infused on a scheduled basis came about because my Doc Lungs called in Doc Infectious to see what if anything else was going on in my body to make me so susceptible to pneumonia, MRSA and other continuing issues of the my COPD and the fact that I was being hospitalized on a very regular basis, and when I wasn’t in the hospital, I was having exacerbation on an almost regular basis.

 

Through a series of simple blood tests Doc Infectious found that my immune system had gone into semi-retirement.  My immune system was not producing sufficient antibodies in response to exposure to pathogens. As a result, my immune system fails to protect me against common bacterial and viral (and occasionally parasitic and protozoan) infections. The net result was that I got sicker quicker and longer than that of a person with a normal working immune system.  Doc Infectious said this problem (where the immune system does not work at the needed level) is not uncommon, and that it occurs usually as we age.  But it is not limited to older folks at all.  The schedule and dosage depends on the individual, and their tolerance of the medicine.

 

Doc Infectious put me on a Gammagard IVIG treatment every 4 weeks.  Originally the dosage was set at 400 units per treatment, but after several months and no significant increase in the needed antibodies, Doc Infectious increased the dosage to 500 units per treatment.  This has had the desired impact.  Recent blood tests show my antibodies to be at low normal and slowly increasing.  Doc Infectious has advised me that I may be on this treatment schedule the rest of my life, but he has also stated that the treatment itself may jump-start my body, where my body actually begins making the necessary antibodies on its own.  At which time, my dosage and schedule could change to reflect the work of my body.   

 

Now with the Mediport, the entire process is quite simple.  I walk in, sit down, have my vitals taken, then the nurse prepares the site, sticks the needle into the port, flushes the line, runs 5 mins of saline, then attaches me to the 1st of 5 bottles of Gammagard.  In infusion starts a slow rate, and with each 15 increment the speed is increased.  After 4 increases the flow is at maximum and continues until I have all 5 bottles.  I generally start at 9am and the treatment is completed around 2pm.  After all 5 bottles are infused; I get another 5 minute saline flush.  Cleaned up and sent home, total time generally 5 ½ hours. This 5 ½ hour period once a month is a small price to pay for the benefits.

 

This treatment has had a significant impact on my health, especially when the dosage was increased to 500 units a month. Prior to going on the monthly IVIG treatment schedule it would not be uncommon for me to be hospitalized 3 or 4 times a year suffering from pneumonia.  In the last 24 months I have only been hospitalized 5 times, but only twice in the last 12 months.  This represents a significant improvement.  I believe it has also significantly reduced the number of exacerbation I have suffered in the last 2 years.  I am grateful that Doc Lungs called in Doc Infectious.  Together they are a great team. 

 

Thank you for taking the time to work through this.  If you have any comments, thoughts, questions or concerns please ask.  Take care and I hope you have a great weekend.  GO BRONCO’s — Bill —

 

 

Tags: , , , , , , , , , ,

Postscript to How I Feel The Week Ending 01/24/14.. Living with COPD

During this post I spoke of my extended stay in the hospital.  I need to clarify some aspects as I know them about the hospital stay.  I was admitted on March 11, 2008 and I was Discharged on June 21, 2008 a total of 102 consecutive days.  Of that time I was in either the ICU ward or in post op ICU for approximately 85 days. I remember many of the events as snapshots, and only parts of conversations. A lot was relayed to me after I was released from the hospital in general conversations with my daughter, my wife, and my friends that either called or visited.

I do remember clearly the evening the hole developed in my left lung. It happened about the 3rd or 4th day after my open heart surgery. Allison my daughter was visiting was at the time.  I felt a small pop on the left side of my chest, no pain, no discomfort, just a little pop. We continued our visit, and soon we were joined by my Aunt Ina, her daughter (my cousin), and her two children.  After their departure, I noticed that the left side of my neck was swelling and puffiness in my chest, and so did Allison.  We called the nurse, and she got the doctor.  It was determined that my left lung had ruptured, and a small hole was the result.  The swelling was a result of air escaping into my body.  Because the hole was so small, a wait and see position was taken.  For approximately 8 days they watched the hole in hopes that it would close up by itself.  The hole did not heal itself, and may have actually gotten larger.  Throughout this period I was alert and as normal as one can be a week after open heart surgery.  It was decided because the hole would not heal itself, they would have to go back in and repair the hole. It’s from this moment forward that my memories are sketchy at best, until I was transferred to Kindred for continued supervised recovery and rehab care. I am going to share some of those memories and snapshots in bullet form (in no particular order). 

  • Ø Upon recovery from the lung surgery having very vivid dreams in color, and in great detail.  Family and friends still get a good laugh when I talk of them. 

  • Ø Waking up with the trach and the doctor handing me a sharpie and a thick pad of paper, and wishing I could spell all the words for the questions I had 

  • Ø Being told that post lung surgery that I had pull the ventilator out twice that’s why I was being restrained 

  • Ø Countless visits and calls from friends and family 

  • Ø The hours of wondering if I was going to die and not ever be able to talk again. 

  • Ø Watching “Monk” 2 times every day, and “The World’s Deadliest Catch” 

  • Ø Losing 55 pounds, it was a very effective diet 

  • Ø Having my beard and mustache removed by someone who didn’t give a shit 

  • Ø Being transferred from Brandon Regional Hospital to Kindred Hospital.  And seemingly being the healthiest person there.  But the place had some of the best hospital food I have ever had. Kindred wasn’t a hospice, but folks didn’t go there for long-term anything. Kindred was the only hospital that I have been to, where English was not the predominate language of the nurses. 

  • Ø Some very crappy attitudes of the ICU nurses at Brandon (that has changed over the last few years) 

  • Ø The extremely vivid dreams I had while in post op recovery ICU these could be really funny to share.  They do include being in charge of the Star Ship Enterprise, and bicycling around the Beltway around Washington DC (at beltway speeds) with a dear friend on the handle bars.   I could not have had more unique dreams had I bought the drugs on the street. 

That folks is enough show and tell for today.  Thank you again for taking the time with me as I recount this.  Being honest I hadn’t really thought much of this in the last 3 or 4 years. 

As always if you have any questions, comments, or concerns please feel free to ask.  Take care, Bill

 

Tags: , , , , , , , , , , , , ,

How I Feel The Week Ending 01/24/14….. Living with COPD

Some of you regulars will notice a slight change in the title of my post, but it really isn’t a big deal, just a better description of the content of my post.  I have not had a single doctor’s appointment this week, I haven’t made a future appointment this week, and I don’t see the need. This coming Monday is my next regularly scheduled appt with Doc Head, and because it is a regular thing, no need to dwell on it.  That’s all that’s on my table medically for me.  This week has been a 3 week, for a couple of days I almost went to a 2.5, but I have settled in on 3. For the curious, both physical and mental aspects were the driving factor towards pushing the week to a 2.5. As I sit here resting and doing my purse lipped breathing my O2 level is 95 percent.  My heart rate is 98, temperature is in the normal range, and my weight still too damn much, but is working ever so slowly in a downward trend.

This week’s word is a phrase; Stages of COPD.  I don’t know if I have ever really qualified the stages of COPD, I might have made mention of them, but I don’t believe I have specifically address these.  Being quite honest, none of my friends or fellow bloggers have asked the question, either out of politeness, or concern for my feeling, or concerned about how the answer might impact the asker.  Hopefully this will help provide a better understanding.  I am going to start out with “book” definition of the term, as I am in a habit of doing then I will address the Stages of COPD as they have impacted me, and I will try to shed light on when I passed thru a stage to my knowledge.  I am also going to speak briefly on “end stage” COPD, and will provide a link to the site that I worked from.

I have chosen the EMedTV website, (http://copd.emedtv.com/copd/copd-stages) for the “book” definition because it seemed the simplest to convey and understand. Of course I have cherry picked the definition for the purpose of this post, but you can go directly to the site posted about to get the “complete” definition.  Most of the others (and I have added links for a couple of them) go into great detail about FEV1 and its relationship to “normal,” as the baseline for the stage. The problem as I see it is; the sum total of all of us equals the “normal,” where very few of us actually equal the “normal.”  How is that for left-handed logic?

COPD Stages – The four stages of COPD are “at risk,” mild, moderate, and severe. In order to determine if someone has this condition and which stage he or she is in, a healthcare provider generally uses a breathing test called spirometry. (Spirometry is the most sensitive and commonly used test of lung functions. It can detect COPD long before you have significant symptoms.)  The symptoms vary for each of the stages, but generally include increasing amounts of coughing, sputum production, and difficulty breathing.

What Are the Stages of COPD? Based on the spirometry test, your doctor can determine if you have COPD and how severe it is.  The stages are listed below:

  • Ø At risk

  • Ø Mild COPD

  • Ø Moderate COPD

  • Ø Severe COPD


At Risk —
In the at-risk stage, the breathing test is normal, but there is a possibility of developing COPD. Mild symptoms of the condition include a chronic cough and sputum production.

Mild COPD — In the mild stage, the breathing test shows mild airflow limitation. Symptoms may include a chronic cough and sputum production. At this stage of COPD, you may not be aware that airflow in your lungs is reduced.

Moderate COPD –- In the moderate stage, the breathing test shows a worsening airflow limitation. Usually, the symptoms have increased. Shortness of breath usually develops when working hard, walking fast, or doing other brisk activity. At this stage, a person usually seeks medical attention.

Severe COPD — In the severe stage of COPD, the breathing test shows severe airflow limitation. A person is short of breath after just a little activity. With very severe COPD, complications like respiratory failure or signs of right-sided heart failure may develop. At this stage, the quality of life is greatly impaired and the worsening symptoms may be life threatening.

Another link is from Caring.com which I have found to be another useful site for COPD related information.

http://www.caring.com/questions/stages-of-copd

Another site which I have found helpful in my research is About.com, here is a link directly to COPD grades (formally stages) 

http://copd.about.com/od/copdbasics/a/stagesofcopd.htm.

So ends the technical aspect of my post.  I will now relate the more personal aspects of stages of COPD and my journey thru them.  And as a preference I will refer to them as stages, it seems more fitting than calling them grades.  Grades I always seem to think I could improve with some effort, but stages just seem to me to be points.

The first stage is defined as “At risk.” My earliest recollection of being told I was “at risk” was sometime in the 1979-80 timeframe. As far as I am concerned “at risk” shouldn’t even be considered a stage. I think we were all born at risk, some of us by the environment we grew up in, some of us by smoking, some of by the environment we worked in during our careers, even some of us by the very makeup of our bodies, are “at risk.” Add to this the fact that the symptoms are so weak, so minor, that they can easily be ignored, makes being “at risk,” a non-issue.  I can only speak for me but as a reformed smoker I am also sure that the first 293 times a doctor told me I was “at risk” I am sure in my mind he or she was talking about being “at risk” of developing lung cancer.  Way back then the medical definition of COPD had not even been developed or offered as a diagnosis, most of us were told it might be asthma or emphysema, or we could have been told it was a combination of those.  But it wasn’t COPD and it wasn’t terminal.  I suspect that even today 01/24/14, if someone goes into a Doctor’s office and are told they are “at risk” (as defined above) of developing COPD.  They walk out the door going “oh okay, we will see what happens.” For me, I had been going thru the “at risk” stage for years, and paying it no mind. 

I think I completely skip the “mild stage” and migrated directly into the “Moderate stage” of COPD.  I believe it must have been sometime in the mid 80’s that I took my first spirometer test, (the link is below) with the results showing mild airflow issues which I immediately attributed to smoking, and closed my ears to my doctor. At this point I was a bit overweight, and had been riding a desk for a long time, and was still smoking 2 or 3 packs of cigarettes a day.   

(http://copd.about.com/od/copdexacerbation/f/spirometrytests.htm)

But the reality was I was just ignoring the writing on the wall.  But one of the medical issues I was having, were all too frequent bouts of bronchitis. From 1993 thru 2004, I must have had bronchitis at least 12 to 15 times.  By the time I got settled in here in Florida and had my first spirometry test in a decade that my bronchitis had graduated to chronic bronchitis. I started taking medicines specifically designed to help and aid respiratory issues.  It started time nebulized drugs (Dulneb), a rescue inhaler, and the continued use of Theophylline (as much as 600mg 2x now 200mg 2X).  Other than being short of breath all the time (which I attributed to being so overweight) there were no real symptoms impacting my life or world.  But in July 2006 things changed quite rapidly.  I developed a Bi-lateral Pulmonary Embolism, which focus attention on my lungs.  As a result I was faced with a harsh reality.  I had some serious respiratory issues, and to my great surprise it wasn’t cancer. 

After I recovered from the embolism, I had a series of tests including a spirometer and sleep tests.  The sleep test revealed I suffered from sleep apnea, and restless leg syndrome, but with the use of the Cpap machine that seems to have stopped and I do rest better.  But the spirometer test and numerous x-rays revealed scar tissue (from all the bouts of bronchitis) throughout my lungs and significant worsening of the airflow thru the lungs. Now I was on the program, my diagnosis had not been defined as COPD but chronic bronchitis, the medications I was taking doubled and frequency of nebulizing went from 2 to 4 times daily.  In the past I had been half ass in my approach to using the nebulizer and the Advair, but now I started using them religiously.  I was now also put on oxygen at night when I slept.

My movement to the Severe Stage of COPD came rapidly.  In March of 2008 I was hospitalized for having an anxiety attack, tests revealed I had 2 blocked arteries to the heart, and bypass surgery was needed.  The bypass surgery was a great success.  During recovery, while still in ICU, a hole developed in my left lung behind my heart.  The team of doctors waited a week to see if the hole would heal itself, it didn’t, and I went back into surgery. When I came out of surgery I was on a ventilator, my memory is quite shaky here, but I have been told by more than one, that not only did I pull the ventilator out once, but I did it a second time. From that point forward I was restrained to keep from pulling it out again.  After a couple of weeks (or so) on the ventilator, I was successfully weaned from ventilator.  I woke up in the intensive care ward, still violently ill, and fighting.  But complicating matters was the fact that I now had a Tracheostomy (see link below).  It wasn’t a pleasant surprise, but at least I woke. After I learned the trick to talking, I asked the doctor how long he thought I would have to deal with this and he said maybe forever. Well he wasn’t correct after 2 weeks the trach was removed, and I was breathing on my own again. I was finally discharged from the hospital in late May 2008.  But now I was on oxygen 24/7/365, and have been ever since.  I was officially diagnosed with COPD in July of 2008 and that when the decent down the ladder began.

http://www.thoracic.org/clinical/critical-care/patient-information/icu-devices-and-procedures/tracheostomy-putting-a-breathing-tube-through-a-small-hole-in-the-throat.php

For those interested in keeping score my FEV1 is 39.  I meet most of the criteria for the Severe stage of COPD, but thankfully I have no heart related problems.  I have been plugging along at this stage for almost 6 years, yes it is sometimes difficult, but smiling I am here and I am pretty active, but most importantly I am full of life.  Yes it has been a fight, but one that I willingly partake every day.  If you learn anything from this, learn to fight; learn to not give up or in.

This is getting extremely long, and I was going to add the technical definition of “End Stage” and my comments, but I think I will wait until next week.  Of course if you have any comments, thoughts, questions or concerns please ask them.  Take care and I hope you have a great weekend.  GO BRONCO’s – Bill (I am pulling for the Bronco’s because my beloved Redskins suck)

 

 

Tags: , , , , , , , , , , , ,

Milton: “The mind is its own place…”

Hunt wrote this months before we became acquainted. She wrote this post before she was diagnosed with COPD. But these words sum up the efforts, the emotions, the anguish, the fears folks with COPD go thru on a daily basis. Hunt realizes the battle she is in, and she seems prepared to fight the damn disease to the very end. We now share war stories, medical tips and any other information we have at our fingertips. I can’t be more proud of her or her efforts, and she’s a good one to have on your side as you wage your own war again COPD. Take care, Bill

Chasing Rabbit Holes

Today, as has been the case for over a week now, I was having trouble breathing. Something about late August, maybe. For a year, I had been good – no sudden difficulties or that incredibly tired feeling – just the effort to breath taking everything I had. The act of eating seeming to be more effort than I had in me. One of the blessings of being unemployed right now is during this episode, I was able to just lay down, sometimes sleeping for three hours at a time. The body repairing itself.

I have this breath test “machine” I can use to monitor how I’m doing. On a scale from zero to 800 – 800 being a really healthy person – on a good day, I come in at 180-220. The pulmonary specialist set the gage on the right to indicate green, yellow and red for danger zones. Green…

View original post 741 more words

 

Tags: , , , , , , , , , ,

How I Feel Today 01.10.14…. living with COPD

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

Stats:              O2 = 80

                        Heart rate = 121

 5 minutes later those numbers are:

                        O2 = 96

                        Heart rate = 104 

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

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

 

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

 

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

 

This week’s word will be EXACERBATION:

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Tags: , , , , , , , , , , , , ,

About My Dad

I have been remiss over the last couple of weeks, the only original thought posts I have created have been the “How I Feel Today” posts, and while informative, and sometimes light-hearted, they don’t reek of my normal talkative self.   I guess it’s a case of writers’ semi-block.  I have reblogged a couple of emails, and some dynamite posts from other bloggers (with some heartfelt prologues) but again nothing original.  This first paragraph is an effort to get my motor up and running.  I feel kinda like an ice breaker, I am just churning away, breaking up big chunks of thoughts into paragraphs, only to throw them in the mental trash can. Kinda like how an Ice Breaker will just plow thru the ice breaking it up and leaving the broken ice in its’ wake.  Just not as productive.

I have music blasting in my ear as I write this; Nickelback’s Next Contestant is slamming into my Dr Dre headphones. I am sure that will help stir up the creative aspect of my head. Soft sad smile, I do believe the music has done the trick, I now know what this post will be about (though it took 7 songs to get to this point). I want to write about my Dad, and you will be the ones’ I will share my story. Over the 18 months that I have been blogging I have read at least seven different Tributes to Fathers.  Some of these tributes were about fathers’ still with us, some of the fathers have passed on, some had divorced the mothers’ of the blog author,  one was written about a father the author didn’t know, and her mother didn’t know either and that was one of the most touching tributes I have ever read. 

Dad (William Joseph Hamilton) was born on Dec 1, 1925 in Herrin Illinois, where he lived pretty much until he joined the Navy during the latter part of World War II.  From all that I clearly remember and stuff I can surmise, Dad was a great student (the Honor Roll all the time) and was a big time track star.  I remember one time going thru a box (of his stuff) that had a ton of memorabilia from his youth.  He must have gotten it from his mother’s house after she passed.  But the box had several years of his report cards, some newspaper clipping from his track star days, and a clipping of when he joined the navy, a few snapshots, and other collectables that his mom must have kept. I have no idea in the world if any of this information exists today, and if it does, who has it?  My sister remembers an album with all manner of photos and other collectibles of dad growing up, but she has no idea where this may be or like the box of collectibles I found, if it still exists.

Dad was discharged from the Navy in Baltimore Maryland, where he worked a variety of factory jobs in the post war environment, while also attending college.  He also met Mom in Baltimore and that is where they were married (on 02/24/49).  Mom was a nurse who graduated from John Hopkins College of Nursing.   I was the first (of 6) born I came 9 months and a day after they were married. 

I am going to share what few positive memories I have of my dad.  The single most important memory I have of my dad goes back to when I was a tiny person, no more than 4 or 5.  We were living in Baltimore, MD and it was the middle of winter, it was very cold.  Dad had taken me to an Auto show, we were coming back from the show, and on the icy street my dad (who was carrying me) slipped and fell, there was so much ice that I began to slide toward a drain at the curb.  My dad scrambled to grab me before I slid into the drain.  He had done this with a broken arm, which happened during the fall.  The most important thing my dad did for me was not naming me William Joseph Hamilton, JR. he had been called Billy Joe, all his young life and hated it, I truly can appreciate that, just as I truly appreciate him not sharing his name with me.  I also remember dad coming to every JV football I played in. Dad loved golf, and we would play together though these aren’t all positive memories because I too loved golf.  He loved going to the stock car races, another thing I love, and those were all positive memories.  Sometimes it was just him and I, sometimes it was the entire family, and sometimes it was just us boys.  One of my brothers remembers him going camping with him several times, these were Boy Scout events, but the brother has positive memories from those trips.  Dad loved to read, and was very well read. He was an intellectual, and knew it and bragged about how smart he was.  

As kids we play two-hand touch on the street in front of our home, from time to time one of the neighborhood dads would join the game, and dad did as well.  Our fifty yard line was marked by a fire hydrant, it was 2 feet in bounds, and you avoided it at all costs.  One afternoon dad forgot, and ran dead into that fire hydrant, he busted the hell out of his shin, he never played again, and nobody missed him.  Another trademark experience with dad, were the car rides to nowhere.  He would draft any available kid to go on a car ride with him.  These rides lasted 2 or 3 hours and dad just drove around, no destination, the radio on his favorite channel, no talking, no explanation, and dad was the worst driver on record.  Sigh, those were some of my favorite memories of dad.       

Folks, it kinda goes off the rails at this point. I am sure that as you read that last paragraph, maybe even read between the lines, but you most likely were thinking, something along the lines, wow that doesn’t sound like a lot of fun.  It wasn’t. Those were the good times.  Dad was an abuser; he physically, emotionally and mentally abused each of us kids.  He was much more physical with us boys, but my sister paid as well, from the emotional abused reaped upon her. Abusing was what he did quite well, he couldn’t keep a job, he couldn’t be there when he was needed, and he ran through money like he won the lotto, but damn was he good at abusing.  I am not going to go into any of the horror stories, it would serve no purpose and it wouldn’t make me feel better, and to be perfectly honest I only remember in any detail a couple. Also being honest, I thought that was how it was supposed to be in the 50’s and 60’s.  I did spend a couple of hours talking to 2 of my sibling about this, and those conversations confirmed thoughts that had been running thru my head for a long time. 

Dad passed away on Feb 16, 2001.  I didn’t shed a tear during the viewing or the funeral.  I have sat in my office many a time thinking about dad, and why I wasn’t upset with his passing.  Part of me understood why, now even more understands. 

Thank you for taking the time to allow me to get this off my chest, has it done me any good, I hope so.  As always your thoughts, comments or questions are always appreciated.  Please take care, Bill

 
32 Comments

Posted by on December 29, 2013 in Grandpa Stories, Observations, Ramblings

 

Tags: , , , , , , , , , , ,

On gay hate and freedom of speech

I don’t know the Roger’s, I don’t know any of the story beyond this post. But there is enough here to share. There is enough here, to make folks aware of the continued hatefullness, and ugliness that goes on around us daily. Maybe a post like this will open one set of eyes that were closed in the past. Maybe a tiny touch of awareness will come of it, but for me the bottom line is to continue to make folks aware, and pray there comes a time when we as a people are accepting of the differences of others. Take care — Bill

 
12 Comments

Posted by on December 11, 2013 in Observations, Uncategorized

 

Tags: , , , , , , , , ,

How I Feel Today 11.22.31

Let’s start off with I am no longer super nurse, my wife is completely over her medical issues, and back to work full speed. Ok folks a new mental scale has been created, and I am still working the kinks out (I like kinky LOL). Based on this new mental image of my health and how I am reacting to inside and outside influences, I would rate this week at a solid 2.5.  A lot of my improvement comes directly from the influence of the folks reading this blog.  Your encouragement, your understanding, your patience makes it easier for me to mentally adjust.  So thanks to you wonderful folks I am a solid 2.5.  I will say a couple of you out there want me to have a 4 week.  LMAO, I am not even going to go into what would have to happen for me to have a 4 week, but trust me winning the lottery would be part of it. LOL LOL.  Let’s keep in on the KISS theory for a while.

 

Last week I was so caught up on talking about how woe is me that I did forget to share that I get to see Doc Skin.  Those that know me, know that I have 2,037,215 freckles, very pale skin (though not quite vampire pale) and anyone that has seen my Navy picture, knows that at one time I had very bright red hair, now it is stately white.  Also I have played golf for years, and always drove with my left arm out the window, all the earmarks of pending disaster.  I see my dermatologist every 6 months.  Usually that means that I leave the office with a multitude of freezer burns, looking almost zombie like.  Sometimes they have to slice and dice.  Last week I had to have a minor in office procedure which required seven stitches, but it’s nature compared to all the other crap last week was insignificant.  The wound is healing well, and I haven’t gotten an ounce of sympathy. Gosh it doesn’t even pay to go under the knife.  The stitches come out next Tues.  I expect to be at the Dermatology office for about 17 minutes.

 

On Monday I had my monthly IVIG treatment, it went off without a hitch. On Tuesday (at Doc Infectious Office), I had an additional follow-up, Doc Infectious listened, showed the proper amount of bedside manner, and issued the order to remove the pic line.  By the time I have my next IVIG treatment it will be thru my new Mediport.

 

I also met with Doc Lungs this week (Tues after the Doc Infectious appt), and he listened and concurred with Doc Infectious that my lungs sound quite clear considering the condition my lungs are in.  We have a standing joke when they ask me to take a deep breath, I tell them “if I could take a deep breath, I wouldn’t need to be here.”  We all chuckle.  For those you that suffer you can use that line as your own with your doctor.  Trust me unless you Doc is a complete ass, he will enjoy that remark.

 

I had my vitals taken several times this week so here are the highlights; bp = 98/64 (was low point during IVIG treatment), resp 100 which is generally where I am with that, O2 = as I sit here typing this is  94-95, temperature = 97.8 or so, weight = 274 is what I am claiming, I am a Pillsbury doughboy don’t forget, and the weight is coming down quite slowly.

 

I was in Dr “N”s office Wednesday and had to have a sonogram to determine if I had any blood clots and I DON’T.  Then I met with the surgeon and we talked about the process for having the Mediport installed.  Having a Mediport put in is out-patient surgery. Go in – in the morning, come out in the afternoon, normal activities immediately.  Because I am considered high risk, they can’t put me to sleep for the surgery, so what will happen is that I will be given a major dose of local for the surgery site, and a mild sedative to keep me calm during the procedure.  Everything will be fine, I expect to have this done sometime shortly after Thanksgiving.  For those that are wondering what the hell a Mediport is, it is a port of entry into the body, thru a major vein where they can draw blood, give injections and administer any type of IV drug.  Which to me means that when I go to the hospital or any other medical facility that needs draw blood or inject something, they can use this port, and reduce significantly the anxiety  of being poked and prodded looking for a vein. For a hard stick like me, it means I won’t have 22 bruises on my hands and arms from them trying to find a vein.

 

“That’s all Folks!” this wraps up the 3rd November report.  Take care, and again thank you for taking the time to explore my post.  If you have any questions, please ask away.  As always your comments are greatly appreciated.  Take care Bill

 

OK folks this is 2 weeks in a row that I have gotten this out in a timely manner.

 
14 Comments

Posted by on November 22, 2013 in How I feel on a particular day

 

Tags: , , , , , , , ,

This blog is about COPD post script….

Yesterday (11/17/13) I posted an extremely long rambling post about COPD, and the impacts it had on my life, and I purported that many sufferers of COPD had many of those same feelings, those same issues and those same experiences.  I suspect that I am right in those assumptions.  But for all the writing I did I left out one of the single most important aspects. There is hope for sufferers of COPD, not during the remaining part of my life but it is coming.

When I was 1st formally diagnosed with COPD 6 years ago, there was very little public acknowledgement of the disease, you never heard about it, and there was nothing really on the Internet regarding the disease.  The medicines available were limited, and there weren’t any new ones on the horizon.  There was no public outcry for a solution, or for research, no movie star or celebrity had taken up the cause. But that is changing.  Over the last 2 years, I have heard COPD discussed on the Today Show, The Morning Show, I think Doc Oz even did a segment.  Numerous articles have been printed in major papers and magazines, and COPD has been spotlighted on shows like Ellen, and even NASCAR has had a race with COPD being in the race title. Change is in the wind, and it is positive.  You hear about stem cell research now, and of course the rats with COPD tests (how rats got COPD is beyond me).  But COPD is on longer the bastard step child of diseases.  People are paying attention.  Every other year there is a national conference where doctors, sufferers, research people, equipment vendors and drug companies all get together and have seminars, drug companies brag about their new drugs, and vendors show the latest and greatest portable oxygen machines,  doctors talk about the strides made in the treatment, and sufferers get together and share their experiences.  I was going to go to last years, but I was just recovering from another bout of pneumonia.   But it is my hope to go to the next one.

The whole point is that all is not lost.  In the future COPD will not be the death sentence it is now.  It is finally getting the attention it deserves.  Though I don’t believe we have our own movie star who has taken it up as their cause, but with all the public attention COPD has drawn in the last 18 or so months, it can’t be long before we have our own movie star.

COPD requires you to fight it, thru exercise, a good diet, and paying attention to your doctor.  And while you might not win the war, you can and will win many a battle.  And with each victory comes the smile of a grandchild or other loved one.

Thank you for allowing me to supplement an already extremely long post.  For as much as I said yesterday, this needed to be said.  The fact there is hope is as important as my or your fight against COPD.  If you have any questions, concerns or if you just want to comment, please feel free.  Take care, Bill

 

Tags: , , , , , , , , , , , ,

This Blog is about COPD…..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Please take care, Bill

 

Tags: , , , , , , , , , , , , ,

How I Feel Today 11.15.31

This week has been a solid 2 based on the scale I have created in my mind and which I have used week to week for the last several months. But my system for evaluating how I feel is changing to reflect the times and I will explain why in just a moment.

Vitals for the week: bp = 116/69, resp 89 (low for week) normally around 100, O2 = 93-96 depending on what I am doing at the moment the O2 is checked, temperature = 97.8 or so, weight = to frigging much but less than the week before, and white blood count 11 (10 days ago almost 17).  I will be fitted with a Mediport between next week and the end of the year, which will make life easier, not having to have a pic line installed 3 or 4 times a year.

Last week I spoke to litany of health issues I was fighting including: pneumonia, MRSA, and a yeast infection in my lungs.  Concurrently as I was drawing battle lines and fighting against all my ills, my wife was acutely ill, having migraine after migraine, and all the ugly side effects of just existing felt miserable. But the good news is we are both past these problems.  On Tuesday, I found out that the pneumonia, and MRSA, as well as, the yeast infection were no longer an issue.  The yeast infection totally gone, the MRSA and pneumonia have both gone into remission.  Steph has been in a constant upward trend all week, and she truly feels her issues are behind her.

On Tuesday of this week I went to Doc Infectious, feeling like shit on a stick, and fully expecting to continue the antibiotic (IV) treatment for at least 10 more days, maybe as long as 14 more days.  That was how not good I felt.  In my mind no significant progress had been made, I was coughing less, and while I felt I had made the turn, I was really expecting and mentally prepared for 10 to 14 more days of intense drug therapy.  To say I was shocked is an understatement when Doc Infectious stated there were no bugs to fight, and the continued used of the antibiotics would only work against me in the long run.  After getting the news I said but Doc I still feel like crap.  Is this my new normal? To which Doc Infectious replied yes Bill, this is your new normal.  So folks, that is why my “How I Feel” scale is going to change.  I have not yet made the mental adjustment, and I may not for a week or so, but it will happen soon.  And soon I will be back to having 3 kinda weeks.  In retrospect I am not the least bit surprised by the diagnosis of Doc Infectious, or Doc’s statement that I now have a new normal.  This past year, I have been hospitalized twice for 28 days, and have had 3 exacerbations which required I have another 62 days or so of IV fed antibiotics and oral medications beyond what is on my normal plate.  That bit of information alone is enough to realize that I need to adjust my scale, because my life is being adjusted each day.

I had a good session with Doc Head on Thursday, having a non-judgmental person listening too, and encouraging you to say what is on your mind is extremely helpful, is and probably one on the reason I remain somewhat sane (and I know so will argue my sanity). So I strongly suggest that anyone and everyone can gain something by having a Doc Head in their life’s, even if that person isn’t Doc at all.  A good friend, a pastor, preacher, or priest it doesn’t matter as long as they got your back, and won’t drop a dime on you, can do you a world of good.  Doc Head checks my blog on a weekly basis looking at “How I Feel” posts.  I am sure she does it to get a reflection on my physicalness for the week, so she can gauge what impact that might have on my head.

Early in the week next is full of Doc visits.  I see Doc Lungs, Doc Infectious, my monthly IVIG treatment, and I see the surgeon regarding the installation of the Mediport.  So I will have plenty of fun stuff to talk about and share with you.

“That’s all Folks!” this wraps up the 2nd November report.  Take care, and again thank you for taking the time to explore my post.  If you have any questions, please ask away.  As always your comments are greatly appreciated.  Take care Bill

PS – aren’t you proud of me, I got this out well before the COB deadline, on a Friday.  Not bad huh!!

 
43 Comments

Posted by on November 15, 2013 in How I feel on a particular day, Humor, Ramblings

 

Tags: , , , , , , , ,

How I Feel Today 11.08.31

How do I feel is the one hundred – thirty two dollar and 14 cent, question.  I won’t tease at best this has been a 2 week. I continue to be under the thumb of the pneumonia and MRSA, but this week Doc Infectious threw in the fact that I have a yeast infection my lungs, it is considered a pathogenic, and he seems greatly concerned, and has prescribed Mycamine 100mg via IV once daily. This is his second choice because I am on cumidin he couldn’t prescribe his 1st choice.  But I understand that if I don’t respond to this drug, 1 of two things will happen. I will be taken off the cumidin during the drug treatment or 2 my INR will be checked daily to ensure it doesn’t skyrocket.  So we are pulling for what’s behind door 1. As for a yeast infection what the hell did I do, inhale some bad bread??  How did I get this question, wasn’t answered, and the how friggin bad is it question wasn’t asked.    The thing is I don’t feel any worse than normal (for recouping from pneumonia and MRSA).  My follow-up is for 11/12.  So next week’s report will have these answers.

 

My recovery has been slowed a bit because I have been required to be super nurse all week.  As bad as I feel, my wife got the big wammie this past week.  This past Thursday she had gone to the doctors to get rid of a sinus infection that has been eating at her for weeks.  The original medication prescribed (the zpac) was not doing the trick. So they changed the prescribed med to Augmentin. While there she also got the flu shot, seemed like a wise thing to do.  Steph left the Doc office, came home sat down and then really began to feel like shit. Well luck was not with her, we came to find out that she had an allergic reactions to both the flu shot and the Augmentin.  We were a phone call away from the IR Wednesday night, but she refused, and has shown steady progress since.  She still has the sinus infection, and today we spent the better part of the afternoon at the ENT doc, her sinus are so swollen that he could not get a scope in there to check it out and do a thorough exam.  This would account for the awful headaches, body pains, and other pains she has experienced this week.  It also gives reason for a lot of the other symptoms she has had all week. But relief is in sight.

 

As for me, and this is about me.  I have had my vitals checked several times this week. Temp earlier in the week was a bit on the high side, currently running in the normal range.  Pulse generally around 100, and BP at worst was 116/69.  So even with pneumonia, and a friggin yeast infection, not to mention MRSA I am doing damn fine.  Now if I could just breath I would be running at the 4.5 level verses the 2 I am running at.

 

Upcoming appointments include; Doc Head Monday morning, Dermatology appt Monday afternoon, and a follow-up with Doc Infectious on Tuesday and that about rounds out the appointments for the coming week.  Oh I must not forget my hair stylist Tuesday afternoon, she wants to trim my beard more Santa like over the next few weeks. Of course that will be fun.

 

Folks, I know I have thanked you for the outpouring of love and caring since the passing of Cassi, but I wanted to do so just one more time.  To spend just a moment thank each and every one of you for the well wishes, the love, and the concern for my brother and his family.  Your outpouring of warmth and caring has been beyond any expectations I may have had.   Thank you.

 

Folks I also want to warn you, we are fast approaching Depression Season.  The Holidays are particularly bad for folks that are on the edge. Take a moment to look about you, check your friends a bit closer, and most importantly take a good hard look in the mirror.  If you have any of the common signs please contact someone anyone.  Sit with a friend and spill your guts, see a Doc Head, depression is not something you can beat on your own, I know. Please just keep this in mind.  We all have friends that can succumb to it, and for us in the Discussion Group the percentage is significantly higher, we need to pay closer attention is all I am saying.  Watch and reach out for our friends and neighbors.

 

Folks this wraps up the 1st report of November.  It isn’t great, but it isn’t piss poor either.  I suspect by Thanksgiving I will be totally ready to sit down at the feast and gain 10 or so lbs.  I wish to extend to each of you , and your families, a warm smile and a twinkle from my eye.   Take care, and again thank you for taking the time to explore my post.  If you have any questions, please ask away.  As always your comments are greatly appreciated.  Take care Bill

 
11 Comments

Posted by on November 9, 2013 in How I feel on a particular day, Humor

 

Tags: , , , , , , , , , ,

How I Feel Today 10.19.2013….. (finished on 10.22)

Good evening folks this is Saturday night, and I am about to head out to dinner with the family here in Louisville KY.  So this document will not be completed until sometime tomorrow or later.  Of all the “How I Feel Today….”s  I have written this will turn out to be one of the most important.  It is something that has been forming in my head all week.  I use these posts to manage my physical coping with COPD.   From time to time I talk about the mental aspect of being terminally ill, and I have spoken about depression and the impact it has on me and the disease. When I have spoken about death, it has always been mine that I was talking about.  This is the 1st death that has really reached its ugly ass hand out and grabbed me hard.  It has been a brutal week; physically I am doing fine nothing really to complain about but mentally not so good.  If I had to rate the week at best I would give it a 1.5, for as good as I feel physically my reaction to Cassi passing has been off the chart

We got the call at 445am Monday of this week, everyone knows that nothing good comes from a call at 445am.  As I picked up the phone and heard my brother’s John’s voice, the very 1st thought that crossed my mind is that Jim (2nd oldest) (sorry Jim, he has begun to read my blog) had passed.  This would have been crushing, but Jim (like me) is kinda sickly, and it wouldn’t have been totally out of the question, but as John when on, he painted a horrific picture.  The details were sketchy as best, but there had been horrific accident.

Cassi and Sarah (my other niece) were driving back from St Louis. On their return they had a flat tire.  They pull the car off the road on the left side of the highway, soon after their car was struck.  Both were injured, but Sarah was hospitalized for a couple of days, and Cassi passed away on the 19th of October.

Folks, it is now October 22, and I am now returning to Florida, I have had time to think, I have had time to mourn, I have shared my grief with my family, and I have helped lay Cassi to rest. But I am still not totally right.  I don’t believe I felt this bad the day the doctor told me I was terminal.  Grief is the world’s heaviest weight.  I have not known grief to this level my entire life.  When my parents passed away I grieved the lost, but both had been ill, and had full lives.  When a child dies, that is a whole different level of grief.  I truly enjoyed Cassi, she was as sweet and innocent as she could be, she never had a negative or ill word for anyone and was always quick to smile and brighten your day.  I know God has a plan, every preacher tells me and you that, but I don’t understand it, Ed doesn’t understand it, Vicki (Cassi’s Mom) surely doesn’t understand, nor do any of Cassi’s friends.  And poor Sarah, she probably understands the least.

I well survive this, and in time Ed, Patrick, Sarah, and Vicki will find ways to come to grip with this.  As much as I don’t understand God’s plan for Cassi, I thank him for not including Sarah.  I also thank him it wasn’t my daughter or my granddaughter.

I will return to normal “How I Feel’s” this coming weekend.  Please take care, and look around to those you love, and acknowledge them. And be thankful for them. Thank you for your good thoughts, and as always your comments welcomed are encouraged – take care, Bill

 
14 Comments

Posted by on October 22, 2013 in How I feel on a particular day

 

Tags: , , , , , ,

Morbid Thoughts

Preface — I was going to shit can this post, but today (5/8/13) I found out I once again have pneumonia and pseudomonas. I also found out that a drug that is normally used to fights these illnesses’ is no longer effective in my body.  The list of drugs which are effective continues to shorten. So having said that it seems this post has even more value than originally thought.  Oh more great news, I will also have a pic line installed Friday, and after vacation most likely a medi-port. OH Joy!

Anyone that has followed my blog understands I have COPD, it is a terminal disease, I was “officially” diagnosed with COPD in 2006. and it’s the 4th leading killer of people worldwide. Like any other terminal disease it is not fun. (DUH!) Sometimes the worst part about it is that it takes such a damn long time to complete its’ mission, except at the very end when it races to the finish line. For those who don’t know COPD is the most common lung disease and is made up of a combination Emphysema and chronic bronchitis. COPD’s symptoms include a long-term cough with mucus, and shortness of breath or SOB. Eventually the outcome is the total destruction of the lungs.  Gee, that sounds like fun already.  If you hadn’t figured it out, I guess now is as good a time as any to warn you that this blog will be filled with my random morbid thoughts about this disease.

My recent pulmonary tests (4/13) revealed that my lung function is down to 41 percent, that’s like having a little over 3/4’s of one lung to use for all things breathing.  It doesn’t mean I can run a half marathon.  Any congestion, any irritant, overly spicy cooking, the smell of a single cigarette, a small brush fire a mile away, a hard breeze in my face, a mask which prevents the spreading of germs, even standing in the shower with the water in my face, trying to walk 50 yards without slowing down or stopping, all has a very real impact on my ability to breathe.

Like most COPD sufferers I can have a runny nose and cough on Monday and full-blown pneumonia by late Wednesday. I feel sometimes (but not all) that considering all my visits to the doctors I must be a hypochondriac. But the reality is I know I am not, and that these visits to the doctors help me in my fight against COPD. Yet even if I think I might be coming down with something my anxiety amps up, I fear the worst and my head plays mean games. But when I become sick, it is that much worst. The worst is the realization of another extended stay in the hospital.

For the last 2.5 years, it seems that, I have been going to the hospital every 6 months or so.  Prior to the last visit, my average stay was about 7 days.  But this last visit busted the curve with my 21 day stay.  I truly hope that isn’t a new trend.  I can eat only so much hospital meatloaf and egg noodles.   But with each exacerbations and hospital stay, are generally followed a further diminishment of lung capability. Time is the enemy.  Time always wins.

Speaking of fighting, (LOL a couple of paragraphs up) when does a person who is terminally ill have the right to stop fighting?  How much anguish should a terminally ill person put their love ones and their friends thru?  When does a terminally ill person stop making purchases for him or herself?  When is it okay for the terminally ill person to start publicly feeling sorry for themselves? are these folks ever allowed to ask “my me?”  We know we are a burden on our loved ones, but why does guilt sometimes have to come with it?   Of course these and many questions I haven’t even added are all rhetorical.  There aren’t any clear answers.  The answers change from individual to individual. And the answers change with where a person is emotionally, mentally and the stage of the disease they are in.

Let me put you to rest, I have no intention of giving up or in to this fucking disease. I have no intention of laying down and dying, I have no intention of ever stopping my fight.  And I will continue to do my very very best to aid and support other sufferers of this disease.  I will continue to fight until I reach that day where I cannot breathe on my own.  Then folks the fight is over and the disease has won.

To accommodate my illness I don’t travel anyplace that requires an airplane ride.  Even with a FCC approved oxygen devices, many airlines will not accept you as a passenger.  So for my wife and I to travel, it has to be car now or boat.  But even going on a cruise requires a lot of advanced planning, so it would be extremely unlikely for me to take a last-minute trip. And we travel all the time.

Hell it has gotten to the point where I even attempt to schedule vacations around when I think I will be in the hospital, and how much time post hospitalization I will need to recover enough to travel.   Even my wife looks at the calendar when we plans trips.  It becomes second nature, and if you think about it, it even makes sense.  But we make the plans and go.

I am about the most upbeat and perky person you would want to know. I am so upbeat I could drive you insane.  I am a kidder, the class clown, a joker, someone who tries to smile a lot, and generally I hope I am someone who folks like to hang around.  The best thing about me is I will not repeat will not just give up, I will not just lay down and die.  Those are skills I just don’t have, nor will I learn them.

Folks I have gone on and on.  I feel better writing this, and while it has some morbid stuff, I hope you understand I will not willing let COPD win.  It will have to kick my ass.

As always your thoughts and comments are appreciated.  Please take care, Bill

 
22 Comments

Posted by on May 8, 2013 in Observations, Ramblings

 

Tags: , , , , , , ,

 
secret Blogger

Status : surviving highschool

How the Cookie Crumbles

An irreverant view of life after SIXTY-FIVE

beefandsweettea.wordpress.com/

a story of Southern agriculture

Me, My Magnificent Self

My Journey To Freedom

Kira Moore's Closet

Ever Moving Forward