Up One Day, Down the Next

On Friday, I shared with everyone how happy I was.  The joy that life brings me, the art of learning to appreciate yourself and those around you.  Excitedly looking ahead to the future and all that it has to offer me.  That is what I discussed in the blog on Friday.

I shared hugs and laughter.  I took care of my children.  Reached out to friends.  Grocery shopped and cooked.  These are the things I did on Friday.

Saturday was the exact opposite.  I sat in pain and was miserable. I couldn't get up and do anything.  Making breakfast was too much work.  I couldn't get a handle on the pain and ended up going to the Emergency Department.  The people were good to me and most were timely.  However, once the case became difficult they decided it was time for me to go home.  Perhaps it was and I am too angry to see that.  Although I find it difficult to justify sending someone home when they are in just as much pain, if not more, than when they arrived because you cannot get an IV in them.  I know I am a hard stick.  The IV team didn't even want to come look at me though they did.  (It is sad when the IV team hears the name "Iversen" and plays rock, paper, scissors to see who has to go play pin the tail on the invisible veins.)  They tried repeatedly but I really have no access.  My veins are "spidery and small" and "peripheral" so it isn't worth it to bring me pain relief.  It is too much work.

This is the kind of invisibility that I am talking about when living with chronic pain.  The hospital sends me home without hesitation because I am "just in pain" yet the same hospital would never send me home if I had a cardiac or renal issue.  Some might read that and say, "Yes but those will kill you and chronic pain won't".  Actually chronic pain kills people everyday but it is attributed to something else: suicide, liver failure, kidney failure, myocardial infarction.  Chronic pain causes stress levels to be extremely high which leads to higher mortality rates. Setting all that aside, isn't the point of medicine to make life better?  When did we become a society that is okay with people being in pain because it isn't life threatening?  Why is the quality of my life less important than the fact that I am alive?

The juxtaposition of emotions of Friday and Saturday makes me feel like I have a split personality.  I believe that often happens with those of us in chronic pain.  The good days or good moments actually feel like a different person has inhabited your usually painful and frustrated body.  I almost want to give the momentarily pain free (anything below a 5 on the pain scale is pain free in my standards) me a new name as it feels like such a different person.  However, I know we are one - the snarkiness binds us.  I am grateful for the periods of time when the pain is so easily manageable and I can get out and do things.   Still, it is a bit unnerving to be living between such vastly different perspectives.

Unfortunately or ironically depending on your perspective, we went for years never having any meds that worked.  Now, we have meds that work to bring my pain down but can't get those medications to me in acute episodes because I have no IV access.  I can't seem to catch a break.  I am determined to MAKE a break for myself and advocate fiercely that they should put a port in which would allow me to have the access needed for medication and blood draws.

I am not giving up but will admit that Saturday I was defeated.  Thankfully, today I can choose to put aside the anger and continue moving forward or harness it and create change in how we deal with and view pain.  Not sure yet which I need to do.  I think it may be a combination dance of anger, advocacy, acceptance, snark, and love....just my specialty.