Writing is therapeutic, so I decided to share a story with you. Life often gets complicated and unfortunately these complications can manifest into depression and pain. What is occurring now affects my ability to write. It affects not only me but both of my children and my spouse. Even doing the little things like washing a load of clothes seems beyond my capabilities. I’m sharing this story not for pity but instead as an outraged parent, being an advocate for my child and demanding answers.
Patient’s mother is difficult and slightly hostel
Angel tried to sit up and crawl out of bed when her mother came in to wake her up for school. Pain shot through her back and shoulders and her muscles began to twitch. She tried desperately to get them to stop but the jerks continued to rack her body.
“Momma, it hurts.” Tears formed in her eyes and slid down her cheeks. Her terror became replaced with desperation at the thought of missing yet another day of school. She was already so far behind. Grades were never a problem, but lately she was in danger of failing her courses.
“I know baby. Just lay back down and I’ll get you something for the pain.” Her mother said as she stroked Angel’s hair.
More pills? Angel groaned as she lay back down. Her body continued to twitch so severely, she thought she might fly off the bed.
Angel released a long sigh, she was only fourteen yet her body felt old and useless. She couldn’t remember half the names of the doctors her parents continually drug her to. It was a waste of time and money, the doctors didn’t listen anyway. They all thought she was insane. Maybe she was. Maybe her parents would be better off locking her up in a nut house somewhere.
Why am I even alive? I can’t do the simplest things. I hurt all the time. I cause my parents nothing but trouble and pain.
She wasn’t stupid. She listened to the doctors and her parents talking. At an early age she was diagnosed with Asperger’s, whatever the hell that was, and now they told her she had fibromyalgia just like her mom.
Angel knew from watching her mom deal with chronic pain and fatigue how difficult little things everyone else took for granted could be yet her mom learned to deal with it. So why couldn’t she? But lately her mom became admit in her belief that Angel also had something neurological adding to symptoms. Finally her mother found a primary doctor and a psychiatrist to listen. Both her knew physician and psychiatrist were both on the same page and stating the symptoms she developed were not related to either the Asperger’s or the fibromyalgia. They referred her to pediatric neurologist over and over, and the ‘so called specialists’ wouldn’t listen to her or her parents. All they said was, “Oh, your child has Asperger’s? Well then, this is nothing more than panic attacks, take her to see a psychiatrist. Angel’s thoughts were interrupted when the bedroom light clicked on.
“Here, honey.” Her mother, Connie, handed her four ibuprofens and a prescription muscle relaxer. “Don’t cry, sweetie, I know it hurts. Everything will be ok.”
Was she lying to her daughter? Connie wondered as she tucked the covers around Angel’s convulsing body before leaving the room to call the school with the news, Angel would be absent again.
Connie fought tears as she spoke to the school principal. Hanging up the phone, she set in the closest chair and hung her head.
Please, God. What am I going to do? How do I help my child?
For two years she watched her daughter struggle to cope with this mysterious illness, taking her to multiple doctors, begging for tests to be run. Funny, she thought, how the quote, ‘pediatric neurologists’ refused to see over the Asperger’s diagnosis and consider it might be anything else. But yet, all the mental health specialists, who deal with multiple Asperger’s patients, insist further testing is needed.
Damn, so what, if I break my leg, Connie thought, will they tell me, ‘oh, no…you have fibromyalgia, just ignore the bone protruding out of your skin.’
Two days later, Connie sat down with the psychiatrist. Once again, trying to deal with the emotional turmoil the entire family felt.
“How do I help her? I’m her mother. I can’t just kiss this and make it better.”
“Let’s go over the symptoms again in order to make sure I have them all down.” The doctor paused to look down at his notes. “ Now, Angel has had two severe concussions, if I remember right.” Dr. Feelings asked.
“Yes. The first was when she was two and she was throwing a tantrum by kicking a dressing and a large ceramic piggy bank fell on her head. The second was three or four years ago. She fell from the monkey bars and landed on her head.”
“And she lost consciousness both times?”
“Let me read her symptoms and you tell me if I leave anything out,” The doctor said.
He flipped through a couple pages before finding the one he wanted.
“Let’s see…motion sickness, constant headache, becomes migraine at least four times a week, constant pain in shoulders and back, muscle spasms in shoulders and back, blurred vision, black floaters in front of the eyes. Have you had her eyes checked?”
“Yes and there is nothing wrong structurally with the eyes,” Connie answered.
“Severe fatigue,” Dr. Feelings looked down at his notes and continued. “Chest pain, rapid breathing when in severe pain, heat intolerance, loss of consciousness, feeling of dizziness, depth perception is off.” He paused for breath. “She is also complaining of pain radiating down her legs and arms along with tingling and weakness. What about the feeling of her ears being plugged and everything sounding muffled? Have they checked her ears?” He asked.
“Yes, and there is no explanation. Her ears look perfectly healthy.”
“Connie, I will be honest with you. A few of these symptoms could be related to her Asperger’s and fibromyalgia, but not all of them. And with this many symptoms that seem neurological in nature, it is imperative we get a neurologist on board,” Dr. Feelings rubbed the bridge of his noise. “And the physical therapist said he was uncomfortable working with her because her symptoms during therapy are not a normal reaction and he so he also felt they were neurological?”
“Yes. I’m so angry, and Angel is becoming so depressed and despondent. She needs help! We need help! I’m her mother, and I can’t do anything to help her. She feels as if she is a burden to us. She feels useless and nuts. She makes comments about not wanting to live or that we would be better off without her. Please, how can I help my baby?” Connie’s hands shook and tears streaked down her throat.
To Be Continued….
Unfortunately, this is a true story. It is to be continued because I am still fighting to get my daughter help. Why am I sharing something so personal on my blog? Because I am my child’s advocate and I am tired of beating my head against a stone wall, it makes my head hurt. It is sad to think that because a child has an Asperger’s diagnosis it is not taken into consideration that something else could ever possibly be wrong. I am hoping that by putting this out there, other parents will have hope and the courage to continue to make their voices heard. Yes, my daughter’s chart at the neurologist’s office says ‘patient’s mother is difficult and slightly confrontational. I say, good for me, I am my child’s voice and I will continue to beat on doors until I get an answer.