Monday, September 28, 2015

The Wheels on the Bus..

This post is rated NC-17. Those of you who don't like a few well-placed bad words, who don't want to be sad or upset would be better NOT to read what follows. I make no apologies for writing raw emotions. No judgment if you choose not to proceed. I'll never know. I'd humbly request the same in return. I'm just giving you a heads up. This is a heavy one....
There is something very broken inside of me. In fact, my insides feel like they're the porcelain remains after a bull's visit in a china shop.  The pain I feel on a regular basis, the same pain that requires steady pain management and greatly limits my activity, is overwhelming on a normal day. In the last week, I've developed pain that has paralyzed me. It's in a different area and of another nature than my norm. I'm so scared that my already intense pain has permanently turned into something even worse. I'm a slave to its depth. 
Saturday night, I ended up in the ER with an incapacitating pain that has only been occurring in the last five days or so. My pulse was through the roof, I was shaking with chills, while at the same time sweating through my clothes. I felt like my insides were being boiled. I had started retching bile, unable to vomit because of my esophageal issues. Even water was making me horribly nauseous.
Everything was moving in slow motion. I couldn't focus. There were periods I don't recall, as I was practically passed out from the intensity of it. It felt like someone was grinding a thousand-pound stone into my lower right abdomen, with frequent surges of even worse pain that I can only describe as feeling like a Charlie horse in my pelvis and into my back.
I was taken right back to a room despite the busy ER. The doctors were pretty convinced it was appendicitis, and I was given pain and nausea drugs through an IV while I waited for my blood work to come back. It was all normal. They made me drink a bottle of contrast before putting me through a CT scan. Nothing showed up. I was released and told to follow up with my doctor.
The pain was somewhat improved, but still an 8 out of 10 on the pain chart. I had to fend for myself until Monday. They told me if the pain and nausea continued that I should return to the ER. That's logical.  It's only the tip of the bullshit iceberg.
Lately, I've had night terrors that just recreate my physical reality. The emotional and physical pain is palpable. They're almost always about my health and/or the loss of my son. When I'm awake, I seek sleep to escape the pain, but it follows me and saturates every moment. When I'm asleep, my dreams chase me back to consciousness, as the pain is just as real.
I tried to nap Sunday afternoon. I hadn't slept the two previous nights. The dream I had still gives chills. I dreamed that my current pain was just as bad as in reality, and I had to try to achieve all my hopes in life in one day. I had to fly on a small plane from one thing to another; achieving love, having a child, establishing a career and getting to my grandmother, who is currently doing very poorly. I only had four flights to achieve them all.
I was on one of the flights, and I couldn't breathe. (I'm on oxygen, so this is super scary.) The pain saturated all the air in the plane, and I knew I wasn't going to reach any of my aspirations. I knew I was going to die. I couldn't breathe, because the pain was suffocating me. It was slowly swallowing me whole.
I awoke from my nap gasping for air like a fish out of water. My mom was next to me on the couch, and when I awoke so distraught, she asked my dream. I proceeded to tell her, and I just broke down. My cries didn't even sound human to me. It was gut-wrenching, soul-quaking sobbing coming from my mouth, my lungs, my traumatized spirit. I was a wreck.

I spent the entire night wide awake, despite being exhausted. The pain was grinding away at my body, and the night terror was grinding away at my spirit. I fell asleep sometime after 4am, passed out in the fetal position from exhaustion.
Again, I awoke gasping. More bad dreams. It was around 10am. I called my head surgeon's office and left word with his assistant Laurie to please have him call me back. My pulse was beating so hard, I could feel it in my temples. I couldn't handle the noise from the TV, the radio, the internet. I just laid with the heating pad, praying for the strength to get from one moment to the next. At 11:41am, my phone rang.
"Hi Jessica! This is John, and I'm a nurse case manager with the department of trauma and general surgery. I saw you called the office this morning, and I'm aware you were in the ER this weekend. How are you doing?"
"You're with Dr. S's office?" I asked.
"Yes. Laurie told me you called. How are you doing?"
"Honestly, John, I'm feeling pretty rough. While my pain isn't as intense as it was on Saturday, I'm barely able to get out of bed. My regular pain medicine isn't touching this pain. My pulse is high, my BP is high, and I'm trembling. I honestly don't know what to do."
"Well, it looks like your blood work and CT scan were normal, so they didn't find anything to treat at that time."
"Yes, John, I'm aware of that. But this isn't imaginary pain. It's very real. The ER doctors agreed. They just didn't find anything to fix."
"I see you have a history of adhesions from all your surgeries. They can work themselves into kinks and cause spasms and pain. Eventually, they might work themselves out. Keep using your home pain regimen."
"This isn't working itself out, John. I can't get this pain under control."
"The problem with chronic pain is that you develop at tolerance to medicine if you've used them awhile."
"I'm aware. I've had chronic pancreatitis for 16 years, and I've required pain medications to treat it. My body unfortunately has a high tolerance to even the strongest meds, and what I'm currently on isn't touching this new pain."
"Perhaps you should return to the ER then."
"Why would I return to the people who told me to leave and call your office?"
My line is beeping in, but I don't want to interrupt John.
"Well, my only other suggestion is to keep following your pain management at home. If it doesn't get better, and you have an opening in your schedule, you should call Laurie and see if you can see Dr. S."
"John, I don't have a schedule. Right now, I don't have a life. And the pain medication I take is for something else, and it isn't helping this new pain AT ALL! I called Laurie, and asked that Dr. S or his assistant call me. And instead YOU called me. And now you're telling me to call Laurie back or go to the ER?"
"Yes, those are my suggestions for now. You should really call Laurie.  I hope this helped a little."
"OK. Thanks for calling John. I'm going to call Laurie back. Please overlook that and don't call ME back. We've exhausted this perspective. I appreciate your time."
I ended the call, and took a deep breath..

I'm waving the white flag of surrender, or in this case, defeat. It's like going in circles. I'm in so much pain, I'm beyond exhausted, and yet I have to hit the proverbial pavement running to figure out what's wrong with myself. I have to be my own advocate, because if I don't, I'll just keep getting worse. I felt so helpless and lost! I needed someone who could tell me what needs to be done and how it can be accomplished. 
It's one of the biggest problems with our medical system today, specifically with treating chronic pain. Doctors tell you if the pain continues or gets worse to go to the ER, and then if the ER can't find anything immediate, they send you home. You may get a dose of pain meds here or there, but it just ends up being wasted energy that only defeats you more when you're already in the gutter. And yet, as you walk out the ER door, they tell you to come back if you're not better. I want to ask, "THEN WHY AM I FUCKING LEAVING?"
All this is going through my mind, and it hit me that I had missed a call while John was gracing me with his wisdom. I listen to my voicemail.
"Hi Jessica! This is Annie with Dr. S's office. Laurie gave me your message. Call me back."
The one person I needed to talk to I had missed because I was talking to the wrong person. Gripping my heating pad like the flotation device I wished it could be, I called back and got Laurie. She connected me to Annie, and I had a mother-load of a breakdown on the phone. She listened, put me on hold for two seconds and then told me that Dr. S would see me during his lunch tomorrow. This man is my hero.
We talked a bit, and she was asking me what I use to treat my pain. I told her.
"Unfortunately, Jessica,  with pain medicine, your body develops a tolerance after awhile. Have you tried a heating pad?"

...... go round and round, round and round, round and round. The wheels on the bus go round and round, all the live long day.