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.

Woot, Woot, Ten Thousand!

Ok, for those of you with blogs that hit 10K visitors or more a month, please give me this moment.  In less than a year since that first blog, I have hit over 10K views.  That’s mind-boggling to me that the musings of an empty-nester mom with a heavy addiction to coffee (Caffeine, in general.) has had more than just her family stop by to see what’s up.

I still honestly don’t know what I am doing….and that’s ok.  Maybe I’ll publish some crazy cat picture and go viral….wait…I don’t have a cat.  Ok, so I won’t go viral….I’ll just keep on jabbering about whatever is on this little brain of mine on the day I say..hey, let’s write for a bit.

Have a fantastic Thursday…this day, this moment will never come again.  Make it count!

And we are sleeping….

I’ve wrestled whether to blog on the events of late.  My head has been so conflicted over everything  What Christ has commanded of me, what the world wants from me, and how to somehow find my place in the sand over all of it.  Questioning myself and what I believe and wondering if it lines up with what Christ wants of me.  Where does love, compassion and acceptance say, “Don’t cross this line.”  Where does Christ say-not that line?

And in this I was reminded of a song by Casting Crowns.

“While You Were Sleeping”

Jerusalem, what you have missed while you were sleeping
The Savior of the world is dying on your cross today
Jerusalem, you will go down in history
As a city with no room for its King
While you were sleeping
While you were sleeping

United States of America
Looks like another silent night
As we’re sung to sleep by philosophies
That save the trees and kill the children
And while we’re lying in the dark
There’s a shout heard ‘cross the eastern sky
For the Bridegroom has returned
And has carried His bride away in the night

America, what will we miss while we are sleeping
Will Jesus come again
And leave us slumbering where we lay
America, will we go down in history
As a nation with no room for its King
Will we be sleeping
Will we be sleeping

United States of America
Looks like another silent night

In that song, the part of “while you were sleeping” and “will we be sleeping” just keeps leaping out to me.  And the more I grapple with it all, I see more clearly that the events of late are nothing new….from the moment Christ took that last breath on the cross….we have been sleeping.  Complacent in his forgiveness.  Not recognizing the gravity of which it was given.  It isn’t one group, one issue, one sin that should have us wondering what has happened….it’s the entirety of it all.  Whether it’s how we take snippets of scripture in the Old Testament to throw stones at our brother and sister in Christ, or how we take snippets of the New Testament to put a blanket of love over everything….it’s not just one group, or two groups…it’s all of us.  It’s you.  It’s me.  We closed our eyes and we slept.  And then we opened our eyes and are trying to put the worms back in the can.  You simply cannot do it.  Impossible.

I read a leading female Christian author say that the decision regarding marriage rights was the line we crossed….I disagree.  That line was crossed well before now.  Christ’s grace and mercy have just been more than we deserve…not just as a nation…but as a world of believers.  America isn’t any more blessed than another country when it comes to Christ.  We certainly aren’t as persecuted as most other nations as a body of believers.  Something tells me that Christ grieves much more deeply each time a newborn is aborted…much more so than seeing a couple take the words of “marriage” and apply it to what doesn’t match the Biblical definition of marriage.  If you truly believe that marriage is Biblically defined, then you know beyond any doubt that while the government may recognize it, Christ does not.  And that’s ok.  It’s ok for a couple to have the same civil rights… doesn’t threaten the church and the words in the Bible…not if you believe that God’s word is  sovereign.  We were told that sin would be rampant amongst us….my suitcase is filled with sin in my daily life.  I can’t begin to sit and judge the sin of another….but I can say that I don’t agree with something and it doesn’t cloud my love and compassion for a person.  Learning to disagree with love is one of the greatest things we can do as a Christian.  Sadly, what I have seen recently are a lot of Christians disagreeing in hate and spite.  Christianity has been easy in America…..far too easy.  Maybe as it becomes a tad more difficult, we will fully appreciate and grasp what the cross gave us.  All of us…in the same amounts.  One of us did not get more than the person next to us.  We tend to appreciate what we have to work the hardest for…..maybe  all the events of the past 2000 years are leading us to something that doesn’t come without hardships….something that matters more than money, retirement, material things….being right all the time.  Something worth dying for.  He died for us…..and if you read the last page in the Bible….God wins.  The battle I read was not a pretty thing…not easy….Satan wants to win and he will try very hard….but in the end, God wins.

I saw recently where someone in the LGBT community said marriage is not the same as “Holy Matrimony.”  That’s where I am going to stand in agreement.  It’s not the same.  The New Testament and the death of Christ released us from the law of the Old Testament….but it did not change “Holy Matrimony.”  The government cannot change that either.  So, to those I love in the LGBT community, please know I love you and I want you to be able to care for those you love when they are sick or when they die that you are recognized as the person that they loved….I do…and if our government says you can “Marry”, then I pray you have better marriage survival rates than we do as heterosexuals.  We, even in the Christian community, have done a pitiful job of holding up the sanctity of marriage….but with that said, I know with every fiber in my body that my Lord, my Christ, your Christ says it’s not a “Holy Matrimony.”  For that, I will not apologize.  My suitcase of sin is full, so I won’t begin to judge the sin in the life of another….God clearly said it’s not my job.

I realize that this blog post will likely bring some folks to delete me or such on social media….and if you feel the need to speak harshly in a comment…just know it will not be approved.  Now, excuse me while I go work on my sin of pride.  Or maybe today is laziness.  I have plenty to choose from….

We attend a church that has issued a statement that they will not perform the unions between same-sex couples.  I stand behind that decision, because I believe that the Bible is black and white on this issue…of what Christ and the church believe.  The church and the law of the government are not the same….and that is America.  And that’s ok.  So, let’s love our neighbor as ourself….and as my grandmother alway said….you can catch a lot more flies with honey than you can vinegar.  May our words be as sweet as honey….filled with grace…..and may we disagree in love.