Life With A Chronic Illness Can Be A Chore, But Only If You Make It So

April will mark the 12th anniversary of the start of my journey with the disease sarcoidosis. My journey actually started long before, but April is when I went into have an open lung biopsy for a definitive diagnosis of the disease. It has been a long and arduous journey, but all in all, my life is a wonderful life, and despite the multiple doctor's appointments and many lab tests, I can honestly say that I am happy. Very happy.

Don't get me wrong, given the choice I would definitely not want this disease and its accompanying conditions of pulmonary hypertention, dypsnea and heart failure. But I can't change a thing about it now, so why fight it? Why get all worked up about all the shit that goes on with this disease. I have such a different outlook on everything now, that now the disease is not even on my mind.

I have to do monthly blood tests, and for that I go to a nearby hospital because their lab is the least busy (believe it or not), with a wait time of less than five minutes on average. I don't get all pissy when I have to go. I actually look forward to my monthly jaunts there. Not because I like getting a needle jabbed into my arm, but because I get to go to the hospital gift shop, and they always have some really cool stuff there, and it's very cheap. They are always changing their inventory, and it's always something new. I usually come away with some little trinket for my wife. And because I always have to fast for my tests, I always make it a point to get an orange cranberry muffin from the cafeteria. I also love chatting with the old lady volunteers. So the monthly visits to do my bloods are a little something to look forward to.

Every three months I have to go into New York City to do my sarcoidosis/pulmonary hypertension work ups. That means x-Rays and breathing tests. Depending on if the pulmonary department x-Ray technician is there, sometimes I have to go down to the hospital's main x-ray department, which can be an hour's wait. And after that, another wait to do my six minute walk test.

I also go in every six months for my ICD interrogation and I try to coordinate that to be on the same day as the sarcoidosis work up. So it's a long day sometimes. After it's all done, I treat myself to a mozzarella and tomato sandwich and a Frappucino at the Starbucks downstairs in the hospital. They have the best tomato and mozzarella sandwiches. Or I treat myself to a lunch at a restaurant I like nearby. My brother works in the city, and I don't get to see him as much as I would like to, so if time permits, we get together for lunch. If the weather is good, I might take a walk in Central Park. So going into Mt. Sinai is something to look forward to every quarter.

Any time I have an appointment that I know is going to be long, I make sure to take my iPad along and catch up on some long overdue writing or reading. My work schedule sometimes does no permit me much “me” time, so I look forward to these quiet wait times to write.

Life is a rain storm, with a ton of drops of life's joys falling all around you and a couple of crappy one sprinkled in between. A doctor's appointment or a lab test is just one crappy drop in that storm. You can either focus on that one drop every now and then that are all the doctor appointments and lab tests as a burden, or flip the coin and see that drop as an opportunity to be with and enjoy being with the one person you came into this world with, and the one person you are going out with. You.





10 Comments Add yours

  1. Maureen says:

    Thank you what a wonderful view of life .

    Liked by 1 person

    1. Basil Rene says:

      Thanks Maureen. Really does not make any sense going through what little time we have on this planet fretting.


  2. charitha subramanyam says:

    I’m amazed . 🙂 you are taking on every problem that comes your way in such a positive manner . I wish we all could do that . No … not wish … I’ll start doing that from this instant 🙂 I am actually tired of constant complaining about things that I cannot change . I will learn to accept and move om

    Liked by 1 person

    1. Basil Rene says:

      Glad you are changing your attitude towards things you can’t really change. There really isn’t any point getting angry. For every minute you spend angry, you lost a minute of time you could have been spending in joy. I know you can do it. Once you become conscious of your negativity and change it, it will eventually become second nature. Be patient though. It doesn’t happen over night.

      Liked by 1 person

  3. charitha subramanyam says:


    Liked by 1 person

  4. Nice to read something for you again, and nicer to know how you are viewing life despite the difficulties 🙂

    Liked by 1 person

    1. I meant FROM YOU….ugh

      Liked by 1 person

  5. Twyla says:

    Well said ,I feel the same way at this point in my journey !!!
    I do some of the same things, I try to incorporate something I like or need to do,on my health maintance days .
    Thanks so much for sharing !!!

    Liked by 1 person

    1. Basil Rene says:

      Thanks Twyla! And welcome. Thanks for dropping by! 😀


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