What Do You See?


Have you ever tried your high-beam headlights when driving in a dense fog?   Scary, isn’t it?  The greater the illumination, the less that you see.

Sometimes, medical personnel used their “high-beam headlights” when caring for the chronically ill; they are so intensely focused on their area of expertise that they cannot see the person before them. Scary, isn’t it?

Have you ever heard the joke:  What’s the difference between God and a doctor?  God knows he’s not a doctor.

Joking aside, I have a benevolent attitude regarding people, even doctors.  However, it is true that some medical care providers have trouble listening.  Still, doctors do their best with what tools they have available to them.  And, that is the problem: their tools.  Every doctor approaches their patients with a complete set of lights (beliefs) that they carry around with them.

Those of us within the chronic illness community have more doctor appointments than the average person; consequently, we begin to understand our doctors’ weaknesses and strengths.  In addition, we develop a greater understanding of our body’s messages.  We know when something is wrong, and often we know the likely culprit.  Yet, it is difficult to convince our doctors to see us through the fog of symptoms.

For example:  Because my lung muscles are inadequate, my blood oxygen levels drop during the night.  Consequently, I need a CPAP machine.  Essentially, it has two cycles: one which blows air into my lungs and another that stops blowing to allow air to be pushed out of my lungs.  Since my muscles are getting weaker, the pressure necessary to blow air into my lungs is continually being increased by my pulmonologist.  This is where it gets sticky for me.  The complicating factor is that my lung muscles are too weak to push the air out.  The result: a build-up of carbon dioxide in my bloodstream.  Not good.

How does the above work as an example?  Testing for carbon dioxide levels in the bloodstream is very expensive.  (In my case, this would be a low-beam headlight.)  Consequently, the relatively easy and cheap measurement of oxygen levels is used to measure lung function.  (The high-beam light.)  So, even though the results of the tests are indicating that I am getting adequate oxygenation at night (thanks to my CPAP), the test does not measure carbon dioxide levels – which are being elevated as a result.  The medical community is shining their bright light on the problem of oxygenation; however, the problem of carbon dioxide levels is hidden in the fog.

It is not only doctors who carry around a satchel of lights (attitudes and beliefs) that often blind us.  How I now approach a solution to the conundrum of oxygen/carbon dioxide all depends on what light I choose.  The reality may be that I cannot resolve the problem on my own.  I may have to battle the medical community (and insurance company) to take another look at the problem. Or, there may be no solution available.  No matter what, my perception will affect what I see.

All this to say the following:

Every person around us is facing difficulties.  Are we being blinded by our prejudices?  Can we see the person, or do we see our own light reflected back on us?

If you think you don’t pre-judge people, let me say two words:  Trump, Clinton.

Published by

Rose Wolfe (Living Free with disAbilities)

Let's get to the elephant first: I have myotonic dystrophy which defines my physical limitations, but it does not define me. Without the distraction of physical activities, I have found my passions: (1) Encouraging others to live more fully with fun, faith, and hope; (2) finding freedom in oil painting; (3) writing about my experiences; and (4) encouraging others to live more passionately. It is my belief that every person lives with at least one disability - for impairments are not limited to those with chronic illnesses. Many neurotypical people are psychological architects who have constructed enclosures in which they trap themselves. Mindsets, attitudes, and perceptions are fluid realities. Many of us have forgotten that it is possible how to live beyond our disabilities. Life may have challenges but faith and hope are within reach. I have made my choice: I am LivingFreeWithdisAbilities.

16 thoughts on “What Do You See?”

  1. The last line made me smile. Probably not your intention, but it did. I learn so much reading different angles on your physio/psychological/spiritual journey. Forest for the trees, high beam/low beam. So much to manage. Prayers for your travels and travails.

    Liked by 1 person

  2. I couldn’t agree with you more about doctors are their perceptions. I have pretty much made up my mind to find a new GP, I have found a new pain specialist. But I am an adult, should I go in and discus my frustrations, write him an email, or just move on? The adult thing to do would be to discuss the issues that make me feel like he isn’t managing my care. But then again, my insurance has to pay for a visit to discuss quality of care, not to address a specific health issue. Not to mention the effort, energy, and extra pain involved with a trip to the dr.

    So there is a test to measure the carbon dioxide in your blood, insurance is just balking at the cost? That is not something to play around with. Are you already on O2? I hope you don’t mind me asking.

    I read something funny today about the election. I don’t remember the exact words but it was something like this, “It feels like Trump snd Clinton are in the middle of a nasty divorce. They are fighting over everything imaginable, including who will get the kids, the American people. At this point, all the kids really want to do is go and live with grandma!”

    Liked by 1 person

    1. I’m not on O2 because it won’t help my situation. My lungs work fine. It is my muscles that are causing the problem. It took me about 4-5 years to finally understand it. No one is balking at the cost. They don’t use the test because there is a cheaper alternative that works in most situations – just not mine. I have a form of muscular dystrophy which is just not prevalent enough. Grandma’s house does sound like the perfect place to go hang out. 😊


  3. Several times over the past 40 years when I have gone to see a doctor for some nagging problem, the doctor has been puzzled. After I asked what the possible diagnosis might be they usually mention 2 or 3 possibilities. I know my body well enough and come away well informed. Kidney issue or a pulled muscle – it was the latter. Hepatitis B or stress – again, I knew it was the latter. Not that I was looking for the doctor’s response.
    The story is very different when you need a doctor to approve a procedure that’s essential.

    Liked by 1 person

  4. I liked your analogy with the headlights also. I have Myasthenia Gravis (MG) which causes muscle weakness from either a lack of that chemical needed to help my muscles work or not enough receptors to pick it up. (It’s late and I can’t think of the chemical’s name.) It affects only the voluntary muscles, but since breathing is partly voluntary those muscles are affected as well. I was on a CPAP for awhile, but got of it after starting on magnesium (Mg). I may have told you this before. My neurologist put me on Mg because I refused to take any more seizure medication. Each one I tried played havoc with my mind and emotions. So many other issues cleared up after I started on Mg I couldn’t believe it. I take roughly 1000mg/day. The 3 biggest problems: (1) recommended to take separate from other meds; Mg coats the stomach and can prevent some pills from being absorbed properly. (2) getting a brand that works; I was surprised to learn that because there is no law stating what’s on the label needs to be in the pill, the company can put in a sugar pill. Nature Made worked at first, but the last bottle I bought definitely doesn’t have Mg in it. Bronson brand I get at the health food store works. (3) knowing your Mg level. I nursed for over 40 years and trusted serum lab levels. Magnesium has to be checked by cell count and I have no idea how that’s done. My blood work in December had my Mg level within normal limits even with me taking 1000mg/day. Actually, there’s a fourth problem: Mg gives you loose stools. It did for the first couple months, but I think it was cleaning out my system. A lot of people stop taking Mg because of that. Since I liked not having to use the CPAP and not having pain 24/7, I put up with the inconvenience. Look it up and check with your doctor. Most doctors will tell you that you don’t need it since your level is normal. Mine was normal when I started on it two years ago.

    Liked by 1 person

    1. Thank you for sharing this information with me. I will most definitely check with my doctor. In the meantime, I will get some mg. It is always up to us to be the primary caretaker of ourselves. Arming ourselves with information and sharing what we have learned (as you just did) is part of our responsibilities. I deeply appreciate your input. Thank you.


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