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Becoming Your Own Advocate

By: Danielle Workman 

Being your own advocate is neverending.

In January, I had to be admitted to the emergency room due to an unusual complication to a common ailment. While it wasn’t related to my mental illness at all, the emergency room staff was convinced that it was completely and totally related to it, and in turn exacerbated the situation.

Bipolar Disorder comes with many side effects and strange symptoms that change for everyone. Some people hallucinate, while others don’t. Some people report seeing things differently while in mania, while others report it during depressions. I am a person who is almost paranoid to new symptoms and side effects of my mental illness and checks in with my psychiatrist and my therapist about them. That’s how I knew my complications were real, physical issues and not my mental illness - because I had advocated for myself.

My face had become numb and I was having olfactory (smelling) hallucinations. Originally I thought the numbness and lack of sensation was due to an injury I had sustained earlier in the month, and that while the swelling had decreased in my injured extremities, that perhaps the nerve damage was becoming apparent and flaring up. When I reported this to my physicians, they insisted that I go to the emergency room immediately.

Upon arrival to the emergency room I was immediately brought back to a room. They took my health history, vitals and asked questions. The nurse looked at my chart instead of me and when her eyes landed on my bipolar diagnosis I knew it. She read it out loud and I insisted that it was not a symptom of my mental illness but something else. Shortly after I was asked to go back to the lobby and wait.

And I waited for two hours, lying on the chairs, in tears of pain and fear as pain descended on my skull. No one came for me, and no one checked on me for two hours. I laid there and was angry at myself, at my body for yet again betraying me. I laid there until my mother, who was ignoring my stubborn requests that she stay home, showed up and advocated for me.

When we finally got placed in a room and a gown again I was in immense pain. I laid in the fetal position, hot tears rolling down my cheeks and answering questions in a whimper. Still, they seemed to dismiss the obvious pain I was in, asking questions about the current “episode” I was in. While I had given up and wanted to forfeit, accepting that this must be a mental illness episode, my mother refused.

You see, normally I am my own advocate. I research, I document and I study my body and my symptoms to make sure that I understand and agree with what is going on. When I got my bipolar diagnosis, I studied it extensively, reading, researching and following online websites and blogs. When I get new meds I contact two pharmacists to make sure that the new drug is in my best interest and will not cause me more harm or adverse reactions. But between the pain, the care of the medical staff, and the realization that they do not believe this is real, I had succumbed to their belief.

That is where I went so incredibly wrong.

They started an IV. I tried to pretend to be more pleasant than I was feeling for the sake of trying to convince them that the pain was real. My mother sat next to me, interrupting the nurses and adding to my health history that they were leaving things out. After twenty long minutes, she sighed and shook her head.

“I know my daughter.” She said firmly. “I know her mental illness. I know her. This is not her mental illness.”

But that statement, that powerful statement of a mothers knowledge and her trust in me and my mind, fell on deaf ears. This became abundantly clear when they returned with a syringe full of medications to give to me to cure both the facial numbness and now the unbearable pain, the stabbing in my skull. I was in no place to be my normal self and to check the medication. I was in no place to ask for information. I was doubled over, eyes squeezed shut and praying for something to make this horrific day go away.

The medication was cold in my veins and I started to tremor. The nurse noticed this and mentioned that it might make me anxious for a few minutes but it would go away. My mom nodded, and I laid there, shaking. I wrapped the blanket around me tightly, my knuckles white. After the nurse left I sat up straight in bed and scowled. “Take me home.” I scowled to my mom. “This is bullshit. We need to go.”

I demanded that I be discharged since they would do nothing to treat me. They didn’t want to do any imaging or lab work, and the medication they gave me was making me long for my bed and my home. They agreed, and I was quickly discharged.

On the ride home I sat quietly in the car with my mother. I looked out the window, a heavy fog coming over my mind. She had given me some excedrin and some coke-cola on the way out of the hospital and it put a slight dent in the migraine. My face was still numb and I was scraping my nail across my cheek, angry.

“You okay?” My mom asked me. “You seem... “ Her voice trailed off.

“I’m just tired.” I replied, but I knew that wasn’t true. As I sat there suicidal thoughts started to swarm around my mind like vultures. My mental illness wasn’t the reason I was at the emergency room, but it was suddenly there.

The drive home consisted of me deciding that I hated myself. Hated my body. Hated my life. In the silence I had decided that I was sick of doctors offices, sick of doctors and emergency room and my body failing me system by system. By the time I got home, I refused to speak to anyone. Instead, I hid in the shower, letting myself cry. Each droplet of the hot water hurt my body, and that caused me to feel even worse.

By the time the hot water ran out, I knew I wanted to end my life.

***

I missed a few days of work due to not being able to get out of bed. I couldn’t hear my alarm going off in the mornings, and my husband was the one sending in my FMLA notifications to my supervisors. I wasn’t eating, and I wasn’t doing anything more than sleeping, and staring at the ceiling wanting to die. I took my rescues. I even took double doses of my rescues. But nothing changed.

I was embarrassed to call my psychiatrist or my therapist. Last they had seen me I had been doing so well. The mere thought of them seeing me now left me furious and anxious. So instead, I laid there.

My mom offered to fill the prescription they wrote me for my migraines for me. I agreed, not seeing why it wouldn’t be worth a shot. I was already as low as I could go, and the only place I could go was up. I had been taking the medication they gave me for my numb face, but it wasn’t helping. My depression had worsened by day three off from work...when I was self harming in secret and hiding it from my family.

Day four the phone rang. It was the pharmacy my mom had dropped the prescription off at. Without thinking twice, I answered it. “Hello?” I asked.

“Is this Danielle?” A pleasant voice asked.

“This is.”

“Danielle, this is the pharmacy calling. I wanted to let you know we will not be filling your prescription.”

“What?” I asked, my voice sharp and angry.

“Yes,” She continued. “It is contraindicated with your psych meds and will cause side effects like suicidal ideation, rage… it is actually a class X drug with your meds, which means you should have never been prescribed it at all.”

The pause between us was long as my mind raced. “What?” I asked again.

“So we’re going to call the doctor and get a different drug for you, but you should have never been given it.” She continued, her voice pleasant. “Hopefully you haven’t had any side effects from it, but if you have we advise you flush your system with lots of fluids, rest, and make sure none of your other meds are contraindicated.”

When the phone call ended, my head fell into my hands and I let out a sob of relief and fear. Relief that this wasn’t my norm, that my meds could still be working and that I may still be mentally ill, but mentally well...ish. Fear that I trusted the doctors at the emergency room to treat and take care of me, and the carelessness of the doctor put me in a place where I harmed myself and could have ended my life.

Just when I thought that being my own advocate had ended, that for a small period of time I could rest and let someone else advocate for me, I was hurt. My mind raced over the events of that trip to the emergency room and felt myself gasp as I realized that if my mother wouldn’t have been there they would have given me a bigger dose of the medication. As they discussed the drug, I recalled her voice saying “she’s a lightweight with drugs, you probably should only do half doses.”

Even with my own mother as my advocate, something happened. I got hurt. And I could have lost my life to my mental illness. Being an advocate for yourself is never ending. You have to always take care of yourself, and always be the one to dictate your own health and wellness.

Take it from me, someone who took a break, and nearly took her life.

Take care of yourself. Fight for yourself.

Comments

I'm so glad you didn't die.

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