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. (webmd.com)
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.
( http://www.medicalnewstoday.com/articles/155244.php )
While 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!
ENJOY YOUR DAY! BE KIND TO ONE ANOTHER, THIS WORLD HAS ENOUGH HATE!
Flourish my seedlings in the garden! Grow grow! Give us a year like last year! I may be fighting a horrible illness but when I’m in my garden I am at peace. I have 12 and 13 yr old boys and a wonderful honey that all chip in and help do the dirty work. Literally speaking 🙂
Turnips, tomatoes, peppers, zucchini, squash, are just a couple from last year. The fully grown plants are our 2015 garden. So far this year we have small plants and seedlings. We are hoping for some warmer weather! Until it gets here of course…
This year we added 3 kinds of green beans, pea pods, couple types of peppers; ranging from sweet to holy sh*t 🙂 3 types of cucumbers, watermelon cantaloupe, pumpkin, peppermint.. Oh the List continues Eek! Food not lawns right?!
I do not use chemicals on my garden, it’s all compost from our home or a little cow poo. Of course my barefoot picture was taken before the cow poo.. But I’m sure it wasn’t the first time. My name is hippiegirl:)
I have learned if I put bar soap around the perimeter of the garden .. Our pesky Mr. Bugs Bunny and friends stay out! I’ve also used the inside of the vacuum container. They do not like the smell of our 2 dogs.
As I actually walked around my yard today I was able to see the full effects of Spring! The white and pink bush has a beautiful smell. The working little honey bees love the monstrous tree.
Any ideas to what they are would be greatly appreciated!
Step within a foot of the tree and you can hear all the busy busy bees.
A West Terre Haute mother speaks out about a new drug that has become a medical miracle for her son, but it’s a treatment some would call controversial.
Source: What would you do to save your child’s life? Part 2
WHAT IF CBD OIL COULD GIVE ME MY LIFE BACK? WHY INDIANA LAW MAKERS IS MEDICINE ILLEGAL?
AS SOON AS I STARTED READING THIS THE TEARS STARTED, My son gave me a hug and kiss before going to bed..While seeing his momma with tears. Good night big guy. 😦
Just one of the many faces of epilepsy,
Just one of the many faces of narcolepsy,
Just one of the many faces of cataplexy,
Just one of the many faces of stroke,
Just one of the many faces of migraines,
Just one of the many faces of depression,
Just one of the many faces of the FIGHT..
You know what I have learned in the last 3 years? Emotions, pain, struggles, loss all surround seizures. Love surrounds seizures.
I have encountered many who have Epilepsy, have a loved one with epilepsy, who work with someone who has seizures. All of them when the word seizure is said has an emotion that comes across them. Especially if they have seen one. They can be scary for both the person having one and the person watching.. I’ve been in both spots. My son has been in both spots. I have a family member who fights them often and has most of her years. I lost a dear friend with them. But no matter how many people see me have a seizure or a cataplexy (Narcolepsy) episode, I see love. There has always been someone to lend a hand, an arm, a leg to rest my head on. Especially the wonderful grocery store workers who often see me have one.. What can I say I don’t leave the house often.. But everyone has to go to the grocery store right..?
Today we went and stocked up.. Getting ready for summer vacation in a household of 2 teenage boys.. I did good all through the store. Slowed down when needed. The lines were busy and loud. Beep, beep, blah, blah, magazines, unloading .. I went weak. But made it. You could tell if you looked at me somet was wrong. Our carry out lady asked if I needed anything, if I was ok and she was here I needed her. ❤ She asked if my back or leg hurt because it was my left side that was weak so I was limping. We chatted and I found out her husband has seizures. They have been married for 37 years! Awesome!
She wouldn’t let me help unpack her cart just like the other carry out people I have came across. Some days I just get in the car. We said our good byes and made sure to tell each other to take care and we would think about the other.
There is a sweet lady at our local store.. We always give hugs now. She had helped me to my car one day .. One of my last days driving.
Be kind to one another, you never know what they have going on in the inside.
I call today a day with cat woman bc I had some pretty quick reflexes today. Luckily! This is how I explained it to my mom in a text : I fell into the patio door with my face, not to hard more sloth like lol. The door slid closed. I was able to grab behind me with my right arm and grab the black chair for my ass. Then my left arm grabbed the wood chair in front of me and pulled it to me for my head and down I went. Then I was jello and was down. I continued to fall, luckily my boyfriend was in the living room. He seen me go down but thought I landed ok lol . But I yelled for him. I was squishing my lungs and stomach and it was tough to breath. (Not like this is the first time I’ve went down, so my family is becoming used to seeing me land some swan dives.😂)
Earlier in the day we went to the post office to mail a stack of papers, oh joy, I left the house. I made it thru changing envelopes and readdressing it but then came the lady ringing me up and me buying stamps. I forgot the word stamps. My mind went blank, I went confused, totally spaced. So I just pointed at the sign for stamps like a little kid. “Ehh mommy more juice in my sippie” luckily my faithful boyfriend by my side took my arm and credit card and finished my purchase and helped me out to the truck. These legs were done walking. You know because it was 10am and I had walked a whole 10 steps to the truck and 20 into the post office. (These boots were made for walking that’s just what they’ll do 😂)
i did manage to make some yummy banana almond spice pancakes with ham for dinner. No recipe needed 🙂 wish I would remember to write my recipes down.
I made my 12yr old young man take a pancake and piece of ham out with him as he ran to play with his friends. A few mins later my 13 yr old knight bust thru the door saying he heard the pancakes were banana and they were delicious! He needed one to go!!
Even though my day started out dark and sloth like it still had it bright and shining moments. Guess that’s what we live for right? 💙🍭
So recently I received a few messages asking how I have been and have the Drs been able to tell me anything new? Answering the question how have I been is always a difficult question to ask. I can always give the simple “I’m doing ok, could be better but you know lol or I could explain what’s really going on. But if I did explain what I was going thru would people know what I was talking about? Now don’t take that the wrong way, I’m not meaning that sarcastically or snobbish in the slightest. It’s just if I told you I had episodes of paralysis, episodes where I lose my speech , my ability to walk, hold my head up, sip water, even flip you off ? They can happen at the drop of a dime, any moment or I can just slowly fade out and be completely paralyzed for 24-36 hours. I can still hear you, I can still understand, for the most part, what’s going on around me. I just can’t move. It’s like being frozen in time. My brain disconnected from my body. My body asleep but my mind awake.
July 2013 I had a stroke and bounced back pretty well. 2 months later I made it back to work. Worked 2 days and ended up having a 2nd stroke. I didn’t bounce back from that one as fast. After almost a month in the hospital and numerous seizures I was released. I would still get seizures but they were your typical seizures. Other than a couple I have been able to hear and remember what happens around me during the seizures. I’ve even wrote a phone number during one. After 3 years of confusion, I’ll go into later, I was diagnosed with Narcolepsy with Cataplexy.
Yes narcolepsy is “that one where people just fall asleep.” It is a sleep disorder. My brain does not produce the chemical hypocretin. Just as others doesn’t produce dopamine.
Its about that time, this is what will be interesting about me writing a blog.. See how far I get with writing before I do fall asleep 😂 good night