Being a patient is hard work…..

I’m tired.  There, I said it.  I am not strong.  I am not tenacious.  I am not some super-human that is out in this world over-achieving as life throws more health lemons my way.  I am tired.  I am just a good actor to the outside world.  I have a feeling this resonates with anyone dealing with a chronic illness…..especially one that requires a seemingly never-ending relationship with operating rooms, various tests..all of it.  Before I began to blog, I honestly didn’t talk about it much.  I was like the ostrich who just put her head in the sand and went through life ignoring it as much as I could.  I suppose I still do to some extent, but realizing I have this huge family sharing this walk has given feet to my words.  So, today, it’s going to be a little chat about how being a patient is well, hard work.

In a perfect world,I, the patient, would walk into the exam room fully confident that the doctor would be well-educated, well-trained, and have a patient load that would indicate that my life is in good hands.  When you  have  a rare, chronic condition…even the experts aren’t always experts.  So, you walk in armed with years of paperwork, scans, research….you take on the role of the “most educated” and the only person in the entire world that has your best interest at heart. For lack of a better way to say it, it just stinks.  Yet, it’s the life you have…and you live it.

You sit in your car as you drive back home wondering if it’s too late to get that medical degree.  Wondering where the zeal for new ideas, research, outside-the-box thinking is lost as a doctor gets years of practice under their belt.  When do doctors stop being the dreamers of all that is possible and become so inward focused that even the remote possibility they could be wrong..or maybe not know something is unspeakable?  And if you doubt or question, somehow it’s that you have an anxiety issue….anxiety in that I don’t want to die…sure.  If that’s what we are calling it today.

In some ways, life with a rare chronic condition was easier before the ability to “know more.”  You went in, whatever was said or suggested-well, that was it.  Wrong, right, dangerous, safe…..didn’t matter….because only doctors had the information and you only had the information that they were willing to share.  We don’t live in that world anymore.  We are told that we, the patient, drives our healthcare…but we really don’t.  We can have all the research in the world….and you still can hit the brick wall of “I’m the doctor, I know all….this is rubbish.”  My favorite right now is, “this is such a rare condition, unfortunately we lack the expertise in caring for this.  Best wishes. ”  I appreciate the honesty, as I’ve had doctors treat me that well….in hindsight…should not have.  Yet…still.

It is estimated there are about 20,000 cases of RRP in the US and maybe up to 17% (huge unknown here due to the little research in pulmonary spread)  of those go to pulmonary involvement and then estimates of 1% of those will convert to squamous cell carcinoma. Pulmonary RRP acts like cancer in so many ways, even if the tissue remains benign.  There is no cure….none.  The Gardasil vaccine series shows promise in that if we can achieve mass vaccination rates, we could reduce or possibly even eliminate future RRP cases…yet even that is tied into politics, fear medicine and somehow attached to morality.  (Getting a vaccine does not make you sexually active….that’s just silly.)  This is the life I live….the life God walks me through…..the life that sometimes has me paralyzed with fear and anxiety over all the “what ifs” on testing, treatment…..the life that causes me to doubt those that are to be trusted with my care….

So, I am not strong…I’m tired…but life is to be lived and sitting is not an option.  I wonder just how many of us with a serious, chronic condition feel the same way…..but each day wake up and put on our mask.  Do you?

John 14:27  Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

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