Joplin Jams to Start Off Summer

Cataplexy is a symptom of narcolepsy. It consists of a sudden loss of muscle tone that leads to feelings of weakness and a loss of voluntary muscle control. (
Narcolepsy is an under-diagnosed, disabling disorder of the brain that affects the control of sleep and wakefulness.

Individuals with narcolepsy experience chronic daytime sleepiness, abnormal rapid eye movement sleep, and cataplexy (brief attacks of muscle weakness and tone triggered by strong emotions).

Narcolepsy can range in severity from mild to severe, and negatively impact one’s social activities, school, work, and overall health and well-being.

Narcolepsy typically begins in the teen years, or early twenties and thirties. It affects 3 million people worldwide. The exact cause of narcolepsy is unknown, although researchers believe it to be an inherited autoimmune disease that leads to a deficiency in hypocretin, a chemical the brain needs to stay awake.

Although there is no cure for narcolepsy, it can be managed with lifestyle modifications and medication therapy.
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imageWhile my Janis sings her heart out on my Pandora; “I Need a Man to Love” to be exact …. I sit on the back porch like always and think where has the time gone? My first born is going to be graduating 8th grade tonight. He will be a Freshman, a high schooler after today. Wasn’t I just cradling him? Holding his hand as he took his first steps? Walking him into his kindergarten class? Taking him to the hospital for his first set and not last set of stitches? Now I look at him .. almost eye to eye. Then we have my baby. Well don’t tell him I called him a baby,, ehh he knows he’s the baby. A seventh grader. 2 more years and I will be repeating this story but crying hysterically LOL

Oh well the love and I will go tonight with the fam and enjoy the festivities and start off the beginning of summer vacation !

Feelin’ Good by Nina Simone.. It’s a new day, It’s a new dawn, and I’m feelin; goooood!

He made it! I made it! And only had 2 cataplexy episodes! My boy is a freshman ahh ! Whats the freshman doing today?… Laying on the coach playing 2K on the Xbox..What else?? 🙂 Whats the 7th grader doing?.. Sleeping of course, it’s only noon duh! I just went in there and asked him “if he was going to sleep the whole summer vacation away??? It is already 2pm!” he jumped and said “WHAT?” ..He’s back asleep now. Growing takes a lot of energy you know?!

Be nice to pack up a blanket a basket of snacks, PB &J’s , bottle of homemade lemon tea, some fruit, sun block, and head to the beach. The lake. The park. Anywhere. Just somewhere to start off the summer. We used to go all the time. Anytime we had a free day we lived by a park with tons of trails. We knew those trails like the back of our hand.  The boys had a challenge sorta say. See how far you could walk down the middle of the creek. They didn’t stay on the trails. We would spend the whole day there. My poor back seats and floor boards!!! There was a water spout and the end of the trail so they would spray there legs, feet, socks, arms, heads etc off before we made it to the car.. Remember we are talking about 2 boys around the ages of 8 & 9.  If only there was a water spout to hose off the kids before they entered our car or house every time they entered!

But there’s always a but in life right.. so at home we sit.. with the dogs laying sprawled out on the couch. Lazy beasts !

I remember drivers permit, doesn’t everyone? I got mine as soon as I could! I still actually have mine in a photo album. Freedom. My first car an 89 Plymouth Acclaim. 4 doors, maroon, white and grey leopard seat covers,, that I personally made of course. I wouldn’t have had it any other way! Front and back, even had a matching steering wheel cover. I had so many key chains that hung from the rear view mirror I remember the adults yelling “your going to get a ticket!” HA OK! I made it to my first concert in that car, Ozzfest. 2 cars full of teenagers whipping Burger King breakfast out the windows at each other at 7am. Freedom! Oh and to think my son is going to be asking for car keys in 1.5 years.. and hes just like me .. wheres the emoji with the scared face?! haha

I haven’t blogged in a while so I thought I’d work on some stuff today. My son has a ball game this evening and its a hot one. Temperature has been in the high 90’s humidity in the 80% range. I don’t care for the heat, mainly because it doesn’t like me. Oh the headaches! Short breathe, it also doesn’t help i’m fighting bronchitis. The lovely steroids, inhaler, breathing treatments and let’s tack on a potassium pill while we are in the process. Luckily this didn’t start until the last day of the camping trip! I learned last game that if i freeze ziplock bags of water (ice packs) take them in a cooler, I can wear one under my head band, while under my umbrella. Helps when the Cataplexy (see definition in experts) kicks in too. Sends a nice cold shock to the brain and says ‘hey you WAKE UP your kid is about to bat’!

Camping trip was awesome and we had beautiful 70-75F weather the 2 days we were there. I will definitely be writing about the raccoons who invaded our campsite! Mind you we took our 1 year old Pitt who loves to hunt with us.. Sorry Miss Bella that raccoon puts up a bigger fight than those rabbits you find n the backyard!

Before I start rambling on I am going to hit POST!






Author: hippiegirl5

I am a 32yr free spirit, who loves being a mom, science, family, the earth, education, peace, quilting, gardens, and so much more but due to an incurable sleep disorder I am losing more and more of myself. If not from medication then from not having a medication for Narcolepsy with Cataplexy. I am writing now while I have the ability to write. I would like to help raise awareness because it is a silent but crippling disorder.

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