My apologies in advance for this laborious and confusing rant. I'm still having quite a difficult time talking about this, so I'm hopeful that typing it out helps me move closer toward some answers, and further from tears.
I was admitted to the hospital on 12/28 for a new drug trial for my EM. I was discharged last week and am trying to get past the side effects of the drugs, but still joyous to be home. You know me, I just love my own bed :).
I had a very strange experience with another patient while there.
Let me start off by saying that I thought I was a strong chick when it came to certain things. But it turns out that I was just mushy and squish inside with this encounter.
On New Year's Eve one of my nurses told me that a patient wanted to meet me at the suggestion of my pain doctor.
'How wonderful', I thought. 'Perhaps I will make a new friend with someone who knows chronic pain and disease. We could support each other. I'm in!'
I needed a change of scenery anyway. I had been dealing with tremendous muscle pain throughout my body, eye pain (eye pain?!), and waaaay too much barf with the new IV drugs. Blech!
A little while later she came into my room. Let's call her Helen. She was 61 years old and had been suffering from CRPS [complex regional pain disorder] for 24 years I think. I have CRPS too, but it's not my primary condition. My Erythromelalgia pretty much consumes me. Still, we were both gals fighting to survive each day, or so I thought.
We made some small talk about what our lives are like and the methods we use daily when pain is a monster. Helen seemed quite snarky, which didn't bother me much.
But then she quickly jettisoned into a story about how she WAS married for 27 years. Shoulder surgery somehow triggered her CRPS 3 years into her marriage, and her pain just spread from there.
My EM woke up about six years into my marriage, and I have been married for 17 years. Obviously we both had marriages that leaned more toward the 'in sickness' portion of our wedding vows.
Perhaps I'm naive. I thought we were just having a conversation. But now I look back and see that Helen was he!! bent on trying to decide my future for me. Darn you Helen.
She asked if I had gone through the standard Pain Management therapy program with a psychologist to deal with the ever-changing life of a person with chronic pain - yes I had.
Then she asked if my husband was in therapy to deal with all of the chaos that comes with being married to my disease. I told her that he was not. It just wasn't his thing. But he was my partner and supporter. We were a team.
She then said that this past March 2015 after arriving home from another round of pain treatment, her husband announced that he had decided to leave her, no longer wanted to deal with her chronic pain issues.
I told her I was very sorry for her situation and asked if I could be helpful in anyway, but there was just no point. F$$$ him", she said.
I wasn't about to say anything in response. 27 years is a very long time to be married, and I didn't really know this woman at all.
Internally I started to question why my doctor even wanted her to meet me. Was this a spiritual thing? Was I being tested? Hmm.
Then Helen launched into her opinion (as if fact), that if my husband did not go to counseling soon, our marriage was doomed. He would leave me. And that if he did not divorce me, he would end up hating me for the rest of his life. Resentment would well up within him for all of the parties, weddings and vacations that never happened. It would destroy us. She was sure of it.
She asked if I still had any friends left. True, I've had a lot of friends fall to the wayside. People get scared of what they don't understand, or they are just plain grossed out by what is happening to me visually. I get it. But I told her that I had some great friends that have stuck with me regardless. And I was thankful for every hospital visit and phone call.
Helen didn't have any friends left. "I lost them all years ago. F$$$ them!!", she huffed loudly.
I told her that it might sound easy to tell yourself that you don't need friends, but we all do. 'This is a hard journey to go it alone', I said.
"Well I'm stubborn as he!!, and if they don't like me, well f$$$ them!! I don't need any friends!", she said.
Wow, so much hostility and hurt there.
I started to question myself as to why my doctor wanted this woman to meet me. Was i supposed to cheer her up? Talk her down off of the anger and hurt she was spewing? I wasn't sure. But I felt terrible!
I desperately tried to change the subject. I asked her about some of the things that were going well in her life, but she really didn't have much to say on that.
Yes, we had had similar lives before the health nonsense took hold: We loved our busy jobs, were social, and physically active people. Yes, we eventually had to give up our jobs, our lifestyles, our social life (mostly). I get that.
Finally she threw in that even if I managed to eek out the next couple of decades with this pain, I would probably end up committing suicide.
I looked at this woman and saw bumpy jagged edges and razor points surrounding her. All of that hurt and anger was suffocating out any room for joy.
Helen needed to go back to her room, so I told her that I would like to stay in contact with her and be available to her if she needed someone to talk to. Someone who understood what a chronic pain life was like.
Aw crud, I thought. Did I just say that???
She said that she would have her nurse drop off her email info later, and left. And then I started to cry. And cry. And cry.
My husband took the day off from visiting me on New Year's Eve, since driving can be dangerous. And then SHE came into my room with all of that darkness, and cruel predictions of what she was convinced would be my future. Oh boy what an awful New Year's Eve, eh?
The next morning I was still heavily emotional. Helen's visit burrowed through to my core. I told my hubby about what had happened the next day when he came to visit, but he could barely understand me through my sobs.
He wanted me to rip my doctor a new one for sending that woman over to my room. But I told him that I was sure that she had some good intentions behind the meet.
Perhaps she was hoping a friendship would be created and some healing would begin for Helen at least emotionally? I don't know. My doctor didn't bring it up once for the remainder of my hospital stay, and I STILL cry any time I revisit the scenario, so I'm not going bring it up.
Was I supposed to meet Helen as some twisted sort of motivation to stay positive - or else turn into Helen?
Was Helen supposed to meet me to be reminded of how it IS possible to live with pain, and still hold back the rage?
Would Helen's twisted-fortune-cookie-rant about how I would soon be divorced and suicidal infect my life? Ahhh!
I never got the note with Helen's email info. Part of me is happy that I didn't. I feel guilty for that! Ugh, forgive me...