Every time I go through something truly awful and beyond my limits of pain and agony management, I get the blues. I have realized it is a part of the process. I have been telling myself I need to incorporate it into my expectations; you know, embrace it.
Not working!
I think the very idea of having the blues is that you feel out of control. At least that is how I experience it.
For me, it went like this: I had the surgery I had been dreading and when I awoke I was told that I was being admitted to the hospital for observation because the procedure took twice as long as normal. The nurse attending to me in recovery looked bored and irritated, or maybe that was just me…
Anyway, every time I tried to ask a question, she pointed out the doctor had already spoken with me but I had not been coherent. Well, that’s useful. Why in the hell do the doctors do that?
I was in agonizing pain and she kept telling me she had given me all the medicine she could and I would just have to wait until I got up to my room.
I got to my room and the pain felt like labor: no joke. They were giving me fentanyl which does absolutely nothing for me. I lost control: I screamed.
I finally got shot up with dilaudid (the bad drug) that works on me.
My doctor came in and talked to me again so I had a vague idea of what was going on. My anatomy was strange, (no joke) so it took him forever to get in there and now I have a stent and it will need to come back out, etc.
Shortly thereafter, a hospitalist, (a new noun created especially for our fucked up healthcare system) came in to see me. He was not the doctor on my case, just the floor doctor. He proceeded to tell me he disagreed with my specialist about my use of dilaudid for pain and to lecture me on being an addict. I stuck up for myself and told him to call my pain management doctor if he had questions. The guy was unbelievably rude and condescending.
After he left, they took me to x-ray and I cried. The two x- ray techs had heard and seen the whole thing and seemed freaked out by what had happened. They congratulated me for defending myself.
I was exhausted from all of this but frightened that the floor doctor might try to come back in or over ride my surgeon’s orders. So I called in the charge nurse and told her what happened. She promised I would not have to see that doctor and that my surgeon’s orders stood.
A note here: I should not have had to do all of this. I was in no shape to go to battle and in no shape to be judged by some nitwit of a doctor.
I continued to feel really badly, pain and nausea and dizzy, etc. into the next day. My doctor came by and said my liver enzymes were up but my pancreatic stuff looked good, which was our main concern.
He said the hospitalist would check back in with me later about releasing me. I said that I did not want to be seen by that person, Dr. M. I was assured that he had been spoken to and not to worry.
But I did worry. I felt violated. I had to be on my guard. I did not feel well enough to go home, I know myself, and yet, I felt like I had to do battle about that too.
At some point in all of this I just crashed emotionally. I was alone, my husband had left and I just fell apart. I started crying uncontrollably. I didn’t want anyone to notice because the second they think you are “crazy” in a hospital they treat you like a total freak. I have experienced that in an ER.
So, who should come back in my room but Dr. M.? He was clearly on a mission to redeem himself. I told him I wanted to go ahead and stay the night since it was already 6:00 pm and I could not comfortably hold down solid food. He agreed and was all smiles and light.
After he left, I sort of slumped into the bed and wished I could disappear. The only bright spot was that he mentioned that one of his colleagues would be on duty the next day. That was a relief.
So, was this incident totally because I was treated like an addict because I needed pain meds after surgery?
I don’t think so.
Yesterday was my first day at home. It was rough, very rough. In other, more enlightened countries, I would have still been in the hospital. But that just isn’t how we work here. I was expected to go home after one night and I stretched it to two. Clearly, I am some sort of wimp.
So, at some point during the pain and utter misery yesterday, I started to cry again. I felt like despair, in the form of some horrible black cloud, had descended and landed on my shoulder. I feared it would not leave.
It is the same fear that I live with every day; that I will hurt and struggle every day of my life, and no one will understand.
But today is a bit better. I am up and bathed and I did my igg infusion.
The black cloud is still parked right over my shoulder.
I still feel shamed and frightened and alone. I don’t know how else to feel. My husband is worn out from carrying my weight this week; I can tell. I have to get moving.
And yet, what if it rains again?
No amount of Prozac or reading or writing or therapy can make the cloud go completely away. No drug or movie or book can stop the darkness when it creeps in.
I just have to hang on and pray that somehow, I will make it back out into the light. I have learned the prayer for healing in Jewish liturgy: Mi sheiberach…
I sing it to myself, “Lord please heal me and let me be one in your spirit.”
Amen.