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Morbid Thoughts

08 May

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: , , , , , , ,

22 responses to “Morbid Thoughts

  1. The Persecution of Mildred Dunlap

    May 8, 2013 at 6:30 pm

    Good for you with the greatest attitude ever! Big cyber hug to you my friend. Paulette

     
    • FlaHam

      May 9, 2013 at 3:47 pm

      Paulette, Thank you, hugs and encouragement always work, especially hugs. Take care my friend — Bill

       
  2. Laurel

    May 8, 2013 at 7:43 pm

    I’m so happy that you have this outlet to write whatever you want and all of your supporters-including me! AND I hope you don’t have to eat more than your share of meatloaf and hospital noodles either!!!!!! Hugs and well wishes to you as always Bill!!!

     
    • FlaHam

      May 9, 2013 at 3:50 pm

      Laurel, This has been a fantastic outlet, it allows me to express the joys of living and my life, and it allows me to express darker thoughts when I need. Of all the hospital meals I have consumed the meatloaf one is as close to a favorite as I can get. Thank you for the hugs and well wishes — there is always room for those. — Bill

       
  3. Chatter Master

    May 8, 2013 at 8:23 pm

    I’m glad you feel better for having written this. It sure paints a very clear picture. And puts out there things that those not dealing with COPD (or other illness) may want to consider when working with/for someone who is ill, or when you love someone who is ill.

    You do us all a service by informing us.

    And letting us bask in your wonderful attitude. And ponder some very serious points.

     
    • FlaHam

      May 9, 2013 at 4:38 pm

      Colleen, Thank you for continuing to read my posts, and offer comments I appreciate that greatly. As you know from reading many of my posts I a bit humorist. Even heavy stuff I like to take the sting out with a bit of humor. But sometimes, such as yesterday I wanted the darker aspect to come out. Because no matter how we try can’t ignore the big ass gorilla COPD really is, though my words hopefully it will reach someone and have a positive impact. Please take care, Bill

       
      • Chatter Master

        May 9, 2013 at 9:12 pm

        I appreciate your humor, and the big ass gorilla makes sure he isn’t ignored. Your posts are informative, funny, and endearing. And you are welcome (for reading 🙂 ) . colleen

         
  4. jmgoyder

    May 9, 2013 at 1:18 am

    I wish it could be different for you, Bill. Sending you a bear hug.

     
    • FlaHam

      May 9, 2013 at 3:33 pm

      Julie, Those are such kind words from someone who I am not strong enough to exchange places. My dear, you are a pillar of strength and kindness. I know of your love for Ants and Ming, and having followed you for almost a year, You have courage that I can only pray to have when the time comes. Please take care, Bill

       
  5. laurabwilliamsdesigns

    May 9, 2013 at 7:21 am

    Bill
    I understand completely how you feel. As a fellow COPD patient I get pissed off that so many times I have the “What if” thoughts. My daughter and her 2 yr. old and 8 yr. old live with me and I am much too conscious of the time I have left with them. I also have 19 year old son and see the changes in both of my kids because I know they are having the same thoughts. This is a devastating disease not just physically but mentally. I am also a very upbeat person but some days it is really tough. I wish the best for you and send you my prayers.

     
    • FlaHam

      May 9, 2013 at 9:58 am

      Laura, Thank you for your kind words, and as a COPD patient yourself, you more than many others know exactly what I feel. I sometimes write these posts as if I have several different ailing personalities within me, and they all speak thru my fingers. But I feel those emotions myself. And I take full credit for my words. It is never my intent to hurt anyone, but sometimes being honest isn’t the right thing. And sometimes my words have hurt a fellow sufferer or their significant other. Thank you for your support, I appreciate it more than I have adequate words. Take care, Bill

       
  6. Linda

    May 9, 2013 at 9:57 am

    Bill, Keeping you in my prayers and sending you a big hug…thanks for just being you and for not giving up. Linda

     
    • FlaHam

      May 9, 2013 at 4:22 pm

      Linda, Thank you, your friendship and prayers mean so much to me, and I truly love the hugs. Trust me, I have no intention of giving up. Take care, Bill

       
  7. Rosey

    May 10, 2013 at 7:32 pm

    As always, you made me smile! I too have to schedule trips around my illness, but not in the way of O2 but just being around strangers makes me sick literally. Every time I go out in public for an extended period of time, I wind up with an upper respiratory infection or worse, viruses. Its gotten to where I hate leaving the house and I’m not even on O2 yet (praise Jesus). love and hugs, Rosey

     
  8. Wanda

    May 10, 2013 at 9:13 pm

    Bill,

    Is it OK to say “I don’t know what to say”?

    Love you…

     
    • FlaHam

      May 10, 2013 at 9:45 pm

      Wanda, Of course it is, Love you more !!!!

       
  9. Paula

    May 11, 2013 at 3:20 pm

    I am so glad you keep on writing this post. You have given people a small glimpse to the life of a copd patient and there ups and downs just to get by in life.

    You are right the food at the hospital taste pretty good after awhile. Meatloaf was my favorite also. I was going in every month for about 10 days each time. Did this for about 10 month then this is when the Dr said it was time for hospice to take over. You talk about a wake up call that one is. But as you would say that is a whole new story LOL

    I love your question on when does a terminally person have the right— I know I no longer buy things for myself because I know I won’t be here to use it so why spend the money.

    I love your spirit on not giving into this disease I have got to listen to you more often because I have almost given up several times. Thank you for being you!!!!

    God bless you Bill and I will keep you and your breathing in my prayers. I know how hard it is to realize that you have lost a little more of your lung function.

    Paula

     
    • FlaHam

      May 12, 2013 at 2:39 pm

      Paula, Sometime we walk in step, as if you read my mind and offer me things to write about. While this post was not one of my basic funny stories about me and my family or life, it was very important that I wrote it. I am glad it touched you and gave you something. I really appreicate you following my blog, and generally liking what I write. Please take care, Bill

       
  10. Laura

    May 13, 2013 at 6:37 pm

    Awwww…Billy Bob…sorry to hear you’re back in again…Love you!

     
  11. Allisons

    May 13, 2013 at 9:42 pm

    Bill….hated seeing you are back in the hospital!!! Try to hang in and keep fighting…
    Watching a commercial about COPD right now.
    Vernon

     
  12. DeeDee Granata

    May 14, 2013 at 2:58 pm

    AAARRRR. That’s a really loud scream. I fucking hate this disease. I’m so sorry it’s taking this kind of bite out of you. I am also sending you happy thoughts, if I can find some somewhere over here. I think about when is it gonna be ok to give my stuff away. I don’t use it anymore. But Bob is not ready, which is okay. I’m not really either, but I know it is coming. You fight hard my friend, I just fight. Hugs and love.

     
    • FlaHam

      May 14, 2013 at 3:36 pm

      Dee, Thank you for getting it. It was a struggle to write that post, but it was one that needed to be written. I will be giving my golf clubs away in enough time for a kid to use them next year during high school golf season. I try the very best I can to not succumb to this fucking disease, and 95 pct of the time I win those little battles, That other 5 kicks my butt. I love your happy thoughts and appreciate them to no end. So I gladly accept them open hearted. You and Bob are great together and save each other. I know how difficult it is for you, now hopefully you can get your meds in a timely fashion make the necessary progress you need to make. Please take care, my friend. Be safe — and hugs and kisses to yo. Bill

       

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