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How I Feel for the Week Ending 07.18.14…

18 Jul

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

 

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14 responses to “How I Feel for the Week Ending 07.18.14…

  1. Wanda

    July 18, 2014 at 4:09 pm

    At least some of your flippant responses to “how are you today?” were probably based on the fact that in everyday life it’s kind of a throw away question, the kind of thing you say to someone to pass the time of day or to transition to a more serious conversation. But you make a good point, and definitely one I had considered before.

    Every time I make a doctor visit to MacDill I am asked a series of questions designed, I’m sure, to determine just how I am that day. “Does anything hurt? On a scale of 1 to 10, what level of pain are you experiencing? Do you feel safe at home?” Etc., etc. I’m guilty of dismissing those questions as a waste of time, but it does bring some comfort to think that if someone responded poorly to one of those questions that appropriate interventions would be made.

    Thanks for this week’s phrase–it is, and will continue to be, very useful.

     
    • FlaHam

      July 19, 2014 at 1:35 pm

      Wanda, You are always amazing to me. I love reading your comments they always find ways to make me feel good, and give me the big head. But then you see right thru me from time to time, and you let me know, and for that I will always be in your depth. Sometimes I really struggle to come up with a word or phrase, this week, it came right to me. And it came out of the blue, or maybe the blues, this was something that I needed to set straight. And like you I am going to keep it in mind each time my Doc asks me how I feel, I will carefully choose thoughts and accurately choose words to convey them. Wanda, thank you for all you have given, you are truly one of my very best friends. Take care, Love Bill

       
  2. Marlyn

    July 18, 2014 at 4:38 pm

    Well my dear, I have been stalking every journal entry, parsed every nuance, read between every line and I want you to know that it’s been the only thing that has kept my nose above the water line! Forgive me for not letting you know sooner…I’m just a tad overwhelmed! LOL When I can I will fill you in privately but in the interim this Stalker depends on & loves looking to her North Star:)

     
    • FlaHam

      July 19, 2014 at 1:26 pm

      Stalker, Smiling I had been thinking about you everyday for the past 2 weeks, worried about you and was ready to call out the dogs, and the guide to find you, so your comment is quite timely, and you are not in the dog house any longer. I know you’re in a rut, and I know you are barely keeping your nose out of the water. I know your emotions are being pulled and jerked in many directions. Remember you have a friend here. Don’t be a stranger. Take care, Bill xoxo

       
  3. The Persecution of Mildred Dunlap

    July 18, 2014 at 5:05 pm

    It’s painful to read about the progression you’re experiencing, the length of time holding the bar in the shower, etc. Some of my personal pain, if the wish that it wasn’t so, the wish I could do something to help, and feeling helpless at times to do anything for anyone, which is the way it is sometimes. That said, I’m always grateful for your honestly as it helps me face reality for my own aging process and how to accept the hands I’m dealt. The “how do you feel” responses then, in-between, and now were what you experienced, and it isn’t always pleasant. Being human ain’t always that easy and I’m like you in some respects that I get down on myself for the “should” have felt/acted/been different. I bet everyone has a little (or a lot) of that. Your honesty is something I deeply respect, your owning that you’re human, and have shades of all of the human condition, like me (and every other human) keeps bringing me back here to read more from you, and as I do I continue to learn and grown. Have a good weekend, Bill. Love, Paulette

     
    • FlaHam

      July 19, 2014 at 1:22 pm

      Paulette, It was hard to admit what the progression of the disease is doing to me. I have been as honest as possible with each post, I have laid the facts on the page, and for the most part let them speak for themselves. But sometimes, you have to speak for the facts and this weeks’ post did just that. As for doing something for me, gosh I have no way to tell you what your support, kind words, love, and compassion have done to make it easier for me. Your council has proven priceless. As I was telling Colleen, my biggest fear is that someone who is at the mild or moderate stage of COPD, changes their attitude regarding their fight again the disease because of something I have written or my honesty about the progression. It is your’s and so many others positive attitudes that I write for, giving them inspiration, fostering a positive emotion that they can live life to the fullest even with the disease that is terminal. Paulette, thank you for your continue support and love. Lords knows how much I appreciate it. I am so touched by your comment today, there are so many other words I have. We will have to talk soon. Take care, Love Bill

       
  4. Chatter Master

    July 19, 2014 at 12:13 pm

    As always I appreciate your humor, and your honesty. It’s difficult to read some of the changes. And add to that the inability to make you (or someone we may know in our little worlds) feel better is unsettling. I can’t imagine anyone reading this and not getting the benefit you hoped for them to get from you writing this. It’s not just about COPD, it truly isn’t. This addresses so much Bill.

     
    • FlaHam

      July 19, 2014 at 1:11 pm

      Colleen, Thank you for your sweet comment, I suspect it was difficult to read about the changes brought on by the progression of the disease. While I don’t want my blog to be known as a continuing pity party, to be truthful I must from time to time, talk about the negative aspects of the disease. My biggest fear is that someone who is suffering from COPD at the mild or moderate stage look at this and become distraught reading about how my end of retirement is approaching. I don’t want a single person who reads my blog to give up or in to the disease. Who knows what turns medicine will make in the next few years. Right now the end will be the same for all of us that suffer from COPD, but how you suffer is entirely up to you. I want those folks to understand that you can have a full life, you can be productive, you don’t have to let the disease win. Colleen your right it isn’t just about COPD, the blog has become about life. Thank you so very much for all you have given me, take care, Bill

       
  5. huntmode

    July 19, 2014 at 11:26 pm

    Hi Bill, this is one of your best. (I seemed to be saying the same thing each week. 🙂 ) This statement of yours from your response to Colleen, “Right now the end will be the same for all of us that suffer from COPD, but how you suffer is entirely up to you. ” That’s it, Bill. Each day has its ups and downs, especially with this disease. I, too, notice the small differences week to week in my own COPD. Reading your words, Bill, gives strength to my own belief in a positive attitude. The answer to “How are you feeling today?” sets the question in the present, which is what we have. There is a balance in being positive and being tender with yourself on days that shake your confidence. Thanks so much for this post, Bill. xxoo Huntie

     
    • FlaHam

      July 20, 2014 at 7:01 am

      Huntie, I am beginning to look at this blog as a novel, and it depends where you start as to the value it may have for a person. Yet for me to be effective the bad days have to be explained to. I would love to report each week as a 2.75 or 3 but the reality is that they aren’t. Another reality is the disease is unrelenting. And that needs to be explained as well. Thank you for you so so supportive words. Soft smile, I have chosen to suffer as little as possible, and in doing so I have chosen to not make my readers suffer unduly. I am glad you “get it” thank you. Keep fighting the battle that is comfortable for you. The one that allows you the best reflection when you look back. Take care, Love Bill

       
  6. sheridegrom - From the literary and legislative trenches.

    July 24, 2014 at 9:48 pm

    Bill – Wow – This is a big lesson. This business of medicine and telling the truth to our own health care providers. Back in the day when Tom would tag along with me to my own medical appointments (it was hard for me to go alone when my vision was gone for almost a year). The doctor would of course always ask me how I was doing and I would respond in my ‘good-patient voice,’ “I’m fine, just fine, thank you.” Of course this gave the doctor(s) nothing to work with. I still have a bit of the good-patient syndrome but nothing like before. This is a terrific post and required reading for all of us before each and every medical appointment. Sheri

     
  7. benzeknees

    August 3, 2014 at 2:48 am

    I have a doctor’s appt. on Tuesday so I’ll have to keep this in mind. I also just went through a counselling assessment Friday morning & finally someone listened to me & I’m going to be referred for counselling at long last. So, honesty is the word of the day, right?

     
    • FlaHam

      August 3, 2014 at 10:28 am

      Benze, Smiling yes you will. Now is the time for complete honestly, it is the only way the doctors have to truly diagnose you. BTW trust me, back 30 years or so ago I wasn’t as honest as I needed to be. Again I suggest you write questions you want and need specific answers to, so you don’t get caught up in the moment and forget, and don’t let him slide, or BS you. It is good that you are in counseling, it will truly help. But again it a treatment that demands total honesty for it to be effective. Benze, you have a lot on your plate. Take deep breaths and do the best you can. Take care, Bill

       

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