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Childhood things...

This is a bit unorganized and unedited.... Might come back and do that later.

We went back through old photos and found evidence of a mild Bell's Palsy in most of my photos starting at age 4 years. It's common in children with Lyme, and like mine - is often missed.

In fact, my own mother said, "That's just your face!" Until I showed her the photos where it wasn't present. There were none before age 4 years, and during certain seasons my face was even, others it had the Bell's Palsy. That goes along with Lyme - Lyme cycles and so symptoms cycle.

Age 4 is also when I started getting sick all the time. I was sick about 3 times as often as the average child. My sister would get 1-2 colds a year. I'd get 5-6 colds. Every year.

There were behaviors. I would have been put on the Autism Spectrum if I was a child today. I had odd repetitive behaviors like rocking. I had poor eye contact. I lacked a lot of basic socialization skills, and was a loner most of the time.

I had problems with clothing - textures, and with touching certain things. I often kept my hands in fists - I didn't know why, just that they "felt funny" if I didn't.

Children with Lyme are often given an ASD, ADHD, ADD, or another psych or behavior health diagnosis.

Back in the 80s those things weren't as easily given out as they are today. I was simply labeled an "odd duck". But the behaviors all fit a child with Lyme, and were all attempts to cope with the symptoms.

The lack of socialization was because of sensory overload (sensitivity to light, motion, and sound). The other children were too loud, too fast, and too colorful.

I was picked on, and children didn't want to be my friend because of those odd behaviors, and because I'd forget things.

I'd forget words, or if reading aloud I'd replace a word with a similar sounding one. I'd forget how to do things in gym class like how to skip, jumping jacks, catching or throwing a ball.

I'd be labeled a trouble maker, instead of anyone really trying to figure out what was going on. But it would have seemed odd: How can a 7 year old who could skip the entire week before "forget" a week later?

There were other behaviors and "quirks":

I was a sleep walker.
I couldn't sit still.
I'd drum the desk or table with repetitive rhythms, or hum them - even after being asked to stop.
I couldn't stand tags on my clothing.
I sought out dim quiet places.
I didn't like anything that moved too fast - swings, slides, merry-go-rounds, carnival rides - because the wind hurt. 

I always refused to eat red meat - started at age 5. I'd cry if my mother tried to make me eat it. I'd eat chicken or fish if I had to. They just thought I was born vegetarian. I felt sick when I ate meat. I felt sick and got rashes when I ate any kind of dairy. Come to find out there is a strain of Lyme that causes allergic reactions to mammalian meat.

As time went on these just became part of me. I was "weird" and "sickly". I learned to ignore the nausea or itching from eating certain foods.

A child doesn't have the words or know how to describe things like Lyme pain. They don't say "my joints hurt". They say "My foot hurts," or "my leg hurts" or "my hand is itchy" or "my cheek is buzzy". And adults often brush them off as nothing, or laugh at them, "Your cheek is buzzy! How cute!" ...when the child may be trying to describe Lyme nerve pain.

Most of my complaints were put into the "growing pains" category, or play injuries. None of them were ever questioned or brought up to a doctor.

It took me 3 years to tell my current doctor that my joints always hurt. I thought it was normal. I thought being exhausted every day was normal. I thought my muscles feeling like they were tearing off my bones was normal. Because I have lived it for as long as I can remember.

I got rashes and a high fever every time I went onto a Penicillin antibiotic. Thought I was allergic to it. So had it written in my medical file - Penicillin allergy. Come to find out all those times I was having die off reactions (herx reactions) all those years.

When I started telling my doctor all these symptoms she asked me when they started...and I couldn't answer her. I just told her I never thought to bring it up before.

I went through a life time of Lyme....undiagnosed. And I grew up in an area where Lyme was not unheard of.... but not one doctor ever tested or asked my parents about Lyme.

There needs to be more awareness and information out there about the real face of Lyme Disease. It isn't as simple or as unheard of as people think.

There are thousands of children out there who are just like I was as a child.... and they are out there undiagnosed being labeled and treated for a disorder that isn't the real problem. And that saddens me.
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