How I Feel for the Week ending 2.28.14……

28 Feb

How I Feel for the Week ending 2.28.14……

I am beginning this weeks’ report at 6:07am, so hopefully I will get it complete and out to you by COB (close of business).  In keeping with recent trends on my part, the jukebox is fired up, and we are starting with some old school Buddy Guy.  Because I know I will be doing this in spurts throughout the day I will provide musical updates as well.

Last week I rated the week a 2.25 and I said that was a weak 2.25, this week it has hovered between 2.25 and 2.50. The reality is that I have been making very little progress, and just barely holding my own.  Well there was a reason for that.  It has been determined that the medicine regiment prescribed for me upon discharge from the hospital has not been effective against the infections in my lungs.  In fact the prescribed medicines have had no impact on the infections in my lungs post hospitalization.  On the 19th a new sputum test and blood work done.  Results of these tests (02/24/14) showed that the Merrem IV and TOBI were having no impact, and different medicines were ordered (Cefepime via IV and Colistimethate via nebulizer) to fight the infections.  It was determined on the 25th that I was stable enough to not required hospitalization at this time, but I was to be monitored and re-evaluated on March 3rd.  I have been instructed to “rest and take it easy,” can I tell you what a PIA (pain in ass) that is, I do rest and relax quite poorly. But having said all of this, I am going to rate the week 2.5 because I feel I am beginning an upward trend.

Having stopped to do a couple of chores we have moved on musically to Brooks and Dunn.

Let get the vitals out of the way for the week ending 02/28/14

INR = 2.6 taken 02/24/14

O2 level @ 2.5 LPM = 94 taken on 02/25/14

BP 112/60 = taken 02/25/14

Heart rate = 101 taken 02/25/14

Temp = 97.8 taken 02/25/14

Weight = 274 taken to often

This week I had appointments with the big three (Doc Head, Doc Lungs, and Doc Infectious).  The appointment with Doc Head was good as always, she has a way of drawing me out when I need to be drawn, and sitting quietly when my mouth and brain are in overdrive.  The appointment with Doc Lungs was not overly productive, we rehashed the finding of Doc Infectious, and I got his concurrence on the path Doc Infectious was going.  Then I had my appointment with Doc Infectious, where we talked about what happened post hospitalization, and what were the future options for drug therapy. It was explained that there are fewer and fewer drug   options available, and that with each future infection, it will take a jumbling of medicines, to pinpoint the ones that will be effective against whatever strait of the infection I am currently fighting.  It was an awareness conversation.  One I appreciated, and one that needed to be had.  Notice I didn’t say it was a fun conversation.

As I had reported last week I was and still am having significant issues with the SOB (shortness of breath), and an overall lack of energy and desire to do anything (all the symptoms that put me in the hospital originally) I have managed to play cards a couple of times a week and I have been kicking Art’s butt, which is a good sign on hundreds of different levels.

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 grown tired of Brooks and Dunn (after 11 songs) and have moved on to Cheap Trick.

Cheap Trick only lasted about 6 songs, and I have moved deeper into the “Blues” with the Queen herself Aretha Franklin.

This week I want to speak of self-advocate.  Something each of us needs to be. This week definition is taken from the online version of The Merriam-Webster online dictionary. And can be seen in its’ entirety at:

Ad-vo-cate – Noun

Full Definition of ADVOCATE: 1 — one that pleads the cause of another; specifically:  one that pleads the cause of another before a tribunal or judicial court, 2 — one that defends or maintains a cause or proposal, 3 — one that supports or promotes the interests of another.

Examples of ADVOCATE : 1 — a passionate advocate of civil rights, 2 — She works as a consumer advocate. 3 — He has paid respectful attention to the home schooling movement by meeting with its advocates and endorsing their cause. —Elizabeth Drew, New York Review of Books, 10 June 2004

First Known Use: 14th century

The key to this definition is the fact that I have added SELF to the word Advocate, meaning you have to stand up for yourself.  You are the single most important aspect of your health, you know your body, you know how you feel, and you know the different aspects of yourself.  If you have suffered from this disease long at all you know how you’re doing, you know when you having a bad day, you know the signs and symptoms leading up to an exacerbation of you COPD, and this awareness will help you as much as any doctor you have on your team.  Your doctor depends on you to tell him or her, what is working what isn’t working and how you really feel.  If you have an appointment and you tell the Doctor you are feeling fine when in reality you feel like shit.  Your doctor will treat you as if you’re feeling fine. If you tell him you feel like shit, then your doctor has a different set of values to work from. You must tell him, you must be able to say to you Doctor I don’t believe the drugs or therapy is working, you have to sit or stand for yourself.  I am sure 99.9 percent of you have more polish than I do, and you can use that polish to your advantage.  To have as long and productive life as possible with this disease you must be your own advocate.  If by some chance you haven’t figured out what leads you to an exacerbation of your COPD, you need to start learning these things so you can be your own advocate.  And as you learn you need to share this with your significant other, so they can see the signs when you choose to ignore them (which I have been known to do).  Again the key is to be your own advocate.  To know what is going on in your body, and to be able to communicate that to the people who need to know.  So when the doctor asks you “How you doin?” you can say something other than “fine” If you’re not feeling fine. Folks I am not saying being a self-advocate is easy, in reality it is extremely difficult. But I am saying start, work on it bit by bit, build your confidence, and trust yourself.  As you build confidence, you become more aware of yourself and you will find it easier and easier to be a self-advocate.  Some will take to it easier than others, and some won’t take to it at all.  Again the key is to try, to be there for yourself.  The doctor doesn’t want to hear fine if you’re not feeling well, he really wants to know, but unless you look like death sucking on a lifesavor, he will have to believe what you tell him.

I was discharged from the hospital on February 11, 2014.  I was sent home with a prescribed list of drugs to use, with specific intervals, for a specific duration.  My 1st follow up with Doc Infectious was on February 19th, at which time I advised him that I was still feeling poorly, and in fact that I felt I had made no improvement since being discharged.  I cited several reasons why I felt, if anything like I was back sliding.  Doc Infectious countered with the fact that normally it takes 3 or more weeks post hospitalization before I am “right” and that patience was needed to allow the medicines to do their magic.  I was persistent, even a PIA, and told Doc Infectious that yes he was right historically speaking, but normally after being on a drug protocol for a week post hospitalization, I had some feeling of being better, I didn’t that day!  It was thru my being a self-advocate that Doc Infectious said okay, lets’ do another sputum test and some more blood work and see where we are.  It was those sputum and blood tests results that showed that the drug regiment I was under was not effective, those results were why my drug regiment was changed mid-stream, and this all happened because I was a self-advocate.

Folks, I don’t claim to know it all, but I have been suffering from COPD long enough to get a feeling for my body, to know the signs.  I have done some reading, and a bit of studying.  And I have a big mouth, and I can be a PIA.  You don’t need a big mouth or to be a PIA, but you need to know you, from there you have knowledge, and knowledge is never a bad thing.  This is just something I feel you need to give serious thought as I have done.

I have completed my report with musical selections from Eric Clapton’s Crossroads and other tunes from the Cream days.  I hope you have a pleasant day.

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


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21 responses to “How I Feel for the Week ending 2.28.14……

  1. Chatter Master

    February 28, 2014 at 5:28 pm

    Bill I’m glad they recognized the meds weren’t working and you’re now on an upswing. I’m also relieved you didn’t have to go to the hospital again. I know how much you despise that. Good to hear the numbers for the week are on an upswing, even if it’s a little one, it’s not going backwards. Now, rest. REST. 😉

    • FlaHam

      March 1, 2014 at 11:54 am

      Colleen, I to am glad to be on the right track, and like you I am quite good with not having to visit the hospital again. I will continue my fight with this friggin disease, and will continue to report my progress or lack of it LOL. It gives me great comfort as an ally, a supporter, and wonderful friend. Please take care, Bill

  2. Helen Devries

    February 28, 2014 at 6:28 pm

    You are so right about being a self advocate….you have to study yourself and your illness and be aware of what is working and what is not.

    Here in Costa Rica the doctors are very keen that you should record things yourself, to make you aware of changes whether up or down and that you communicate with them on the level.

    I’ve not forgotten one of my husband’s cancer specialists in France asking him how he was and when he told her straight she told him not to make a fuss, there were people worse off than him!
    Needless to say we changed hospitals rapidly after that….but had a super Basque general practitioner who fought my husband’s corner for him as he was too exhausted to do much more himself.

    • FlaHam

      March 1, 2014 at 12:00 pm

      Helen, It is so nice to have your support and words of wisdom. I have made a significant effort to understand my body once the disease was recognized and diagnosed. Before then I was lazy in my approach. But your right, and it really doesn’t matter where, you have got to stand up for yourself. You have to have doctors that you can believe in, and trust that your health is their prime concern. And just like you I would walk, no run, from a doctor that displayed the attitude that one in France did to you. BTW how is your husband, I wish him well with the struggle that face him, and I wish you well in supporting your husband. Please take care, Bill

      • Helen Devries

        March 1, 2014 at 1:43 pm

        Thank you Bill, for asking after my husband when you have so much on your own plate!
        He’s had a down cycle recently but seems to be pulling through it – though I think having his little poodle – a present from a kind friend – and his rapidly growing lamb have been a great help psychologically.

        Hoping things are on the up for you soon.

        • FlaHam

          March 1, 2014 at 4:30 pm

          Helen, My dear my plate is no more full than so many others, and it less filled than still more folks. Each of us has our share on our plates, it just works out that way. I am glad he is working his way thru the down cycle, and whatever method that helps him, be it a little friend, or a gentle smile, I am glad it is working. As I am sure you know fighting depression is an on going battle. Sometimes we are better at it than others, but it is something we do need to be aware of. It sounds like you and hubby are doing your best in that regard. Please continue to hang in there and be safe. Bill

  3. benzeknees

    February 28, 2014 at 6:47 pm

    Hi Bill – I’m glad you were PITA enough to make sure your doc listened to you! I used to have a doctor (when I lived in the middle of the bush) who routinely discounted what I was telling him. If I said my stomach was bothering me, he would tell me where I was experiencing pain is not my stomach. I have to preface this by saying this doctor was quite abrupt with all his patients & was constantly telling them how smart he was because he was the doctor. If you disagreed with him, he would as “when did you get your medical license?” Finally, one day, I got fed up with him not listening & shouted at him “I have lived in this body for more than 40 years & I know how my body reacts & what it feels like in here – you do not!” He was quite affronted by this & had a hard time accepting what I was saying. He urged me to be calm (like I must be hysterical to question his authority). But he did start to listen to me more – he would often question what I was feeling, but if I was convincing he would concede to my opinion.
    I have to tell you my body does not register pain the same way others experience pain – for instance, when I had a gall stone my pain registered as appendicitis! When I had a pleural effusion my pain registered as heart problems, then gall stones. My kidney stone presented as many different things before it was finally found. I was misdiagnosed all 3 times until I persisted with the doctors that I was unwell & in pain. I’m not sure why my body works this way – it may be because I was born with spina bifida, but I had to learn early to become my own advocate. Now I ask for what I want. For instance, last week I knew I was feeling unwell but could not put my finger on what was wrong, so when I was in the doctor’s office I asked him to listen to my lungs (rather than just tell him I felt super tired & short of breath). When he said they sounded fine, that was good news for me. My lungs were my main concern. I am still trying to work out what my body might feel like during an exacerbation.

    • FlaHam

      March 1, 2014 at 12:06 pm

      Benze, Smiling, you are quite the tiger my dear, and I am proud of the attitude you take. You serve yourself and your needs well, and at all costs should continue. Being an advocate for myself is something that I have grown into over the years, and really more so since I have been diagnosed with the disease. You have recently been diagnosed with your respiratory problems and are wise to be studying and watching for the signs that lead up to an exacerbation. But as time passes, and you see and learn more about your lungs and how they respond you will be more aware and attuned to their going on. It will be thru this knowledge you will be in a place to better help your doctors as they work to improve you quality of life. Please continue, and take care, Bill

  4. The Persecution of Mildred Dunlap

    February 28, 2014 at 10:50 pm

    I hate that you’re not doing much better but thankfully it was discovered the meds weren’t working. For me, with all you’re going through you’re an amazing inspiration and power of strength. You give me hope, not just for you but for others who read you. Love you my friend. Paulette

    • FlaHam

      March 1, 2014 at 12:14 pm

      Paulette, ME TOO LOL LOL! It does suck to feel like death sucking on a life saver LOL. But I am improving. I thank you for your sweet encouraging words, but I don’t see myself as amazing at all, I just want folks to know you can life thru this and have a decent life as you do. When you say something like “you give me hope” Paulette that makes my heart swell with pride. This is what I write for, to share, and to give others a sense of hope. Thank you so so very much. I do love you my friend I love you deeply. Take care, Bill Side note, My wife and I have been working with a financial planner, to ensure my wife is taken care of after I am gone. We told the planner of my medical condition, so that could be considered when he calculated her financial needs. To show the shift of income when I passed, he used the term “End of Retirement,” which I thought was the coolest way to say dying without being offensive LOL. I may have to work that into a post someday LOL LOL. Again take care, Bill

      • The Persecution of Mildred Dunlap

        March 1, 2014 at 1:04 pm

        End of retirement is a good euphemism! 😉 Many wet wild warm loving smooches back to your wonderful self. You know I/we all reading you love you dearly. Wishing a good day for you my friend.

        • FlaHam

          March 1, 2014 at 4:26 pm

          Paulette, “End of Retirement” is probably the very best euphemism I have ever encountered. It is really a pleasant way to say death, and I will use it as appropriate in my posts. Well my Univ of Louisville Cards, lost to Memphis today in basketball, so I am not a happy camper right now. But give me a few hours or a week and I will get over it. Take care sweetness, hoping you have a great finish to Saturday and a wonderful Sunday. Bill

  5. jmgoyder

    March 1, 2014 at 7:52 am

    Bill – REST AND RELAX! This is from Dr Julie haha! You are a champion spirit and an absolute inspiration.

    • FlaHam

      March 1, 2014 at 12:15 pm

      Julie, Thank you, those words have such a deep meaning to me, I truly hope that my words to help and inspire. Take care Sweetie, Bill

  6. Clowie

    March 1, 2014 at 10:47 am

    I hope you soon start to feel better again.

    • FlaHam

      March 1, 2014 at 11:36 am

      Clowie, Thank you that is very kind of you. Take care, Bill

  7. huntmode

    March 1, 2014 at 4:36 pm

    Bill, due to our hit and miss conversations online, I’ve some idea of how you’ve been doing. Hurrah for your persistence, a/k/a PIA attitude and for your insistence we listen within and communicate with our medical teams. To paraphrase Rabbi Hillel, “If we don’t stand up for ourselves, who will? If we only stand for ourselves, what are we? If not now, when?”

    As is everyone, I’m glad about the new Rxs and that they are beginning to take effect. You are inspiring and give us a lot of hope, Bill. Best ~ HuntMode

    • FlaHam

      March 1, 2014 at 5:10 pm

      Hunt, Thank you as always for your warm kind words. It does help to hear them, and I appreciate them more than I have a vocabulary to express. As we progress thru the disease, we need to pay more and more attention, we do need to help the doctors as best we can, and while I truly hate the Doctor asking me “how I feel” or “how am I doing”, I understand the importance of the answer to those questions. Hopefully, more and more of us will learn to be our own advocate, I know you are yours, and you’re some others as well, how do you manage to have such strong and broad shoulders on your 95 pound body LOL LOL. That’s the magic. As much as I may inspire you and others, you’ll inspire me, you’ll allow me to ramble in a somewhat productive way, and if it were not for your collective support and encouragement, I don’t know where my blog would be. Thank You, and please take care, Bill

  8. Wanda

    March 4, 2014 at 4:54 pm

    I heard, via the chastened Art ;), about the medication fiasco. I’m glad the new combination has you on the mend. Take care, my friend.

    • FlaHam

      March 4, 2014 at 7:34 pm

      Wanda, we will have to talk, I do have additional news. Take care, Bill


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