Tuesday, March 4, 2014

Self-Advocacy is Not Easy; But Oh, So Necessary!

Recently, and for the past five years, I have spoken out about self-advocacy in medical treatment. This has all stemmed from my unfortunate reaction to Cipro; an antibiotic in the Flouroquinolone family. It has damaged my body beyond repair and I speak out in the hopes of preventing others from having to live in chronic pain.

I also hope to alert people that have been diagnosed with unexplained pain, such as Fibromyalgia, to the possibility that their pain may stem from this class of antibiotics, Cipro, Levaquin and Avelox (Ciprofloxen and Levofloxen) so that they do not continue to take these drugs when prescribed, allowing more damage to their body.

I recently read that these drugs may have a tolerance threshold, which means that you may have been fine taking them in the past, and that when you reach your own tolerance threshold, your body may then become damaged. In other words, you can only tolerate these antibiotics for so long before they get you!

This being said, it is often difficult to question or refuse the advice of a medical professional; after all, you are paying them to heal you. You go to them because you are ill, so it is not easy to question their authority, or their treatment methods. We all assume that they know more than we do; and often, they do.

However, many medical professionals have no idea just how damaging Cipro and Levaquin can be, and part of the reason for this is simply because not many people ever correlate their pain to the use of an antibiotic. In many of our minds, antibiotic side effects include nausea, diarrhea, dizziness, hives and difficulty breathing; not crippling pain. So if we do not realize that our pain is from an antibiotic, then we do not report this to the FDA or to our physician, so the issue just snowballs.

Now, when we are sick, especially in a hospital, we are not always thinking as clearly as we would normally think, and when the nurse comes in and hangs a bag on the IV pole, we rarely even know what it is. We are at their mercy; we typically trust that they know what they are doing; and most of the time they do.

What we all must realize and accept is that doctors, nurses and other medical professionals are simply human beings; just like you and me. They are performing their “job” when they are treating us. I am certain that they can have bad days, have personal problems that follow them to work and may be sleep deprived, just like you and me.

The most important thing that we all need to remember is that at the end of the day, we live in our own bodies and that we must do anything and everything that we can to stand up and take charge. Mistakes are made, and extremely powerful antibiotics are over prescribed; this happens on a daily basis. When we are ill and unable to self-advocate, then we need someone to do it for us. We need to be certain of our treatment and understand what we are taking, what the dosage is and why. We must not take drug warnings, especially Black Box Warnings lightly. We must stand up for what we believe is right for our own bodies.

Living with CML forces us to step up to the plate and to learn everything that we can about our cancer and our treatment. Not doing so could be detrimental to our health.

Please take this seriously; I do not wish Cipro or Levaquin pain on anyone, and I do not wish anyone to be improperly medicated during treatment. I have twice received the wrong strength of medication in the mail which would have led to an overdose.

Be careful out there; It is a jungle!!


2 comments:

  1. I have a resistance to cipro...was only told that is if i get a chest infection to make sure i tell the doctor that i am cipro resistant, and that was told to me by a nurse.
    Thank you for the info,

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  2. Yeah, Cathy; I do not wish my Cipro pain on anyone!! It is brutal and may be permanent!

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Bricks for the Brave!!