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Thread: CN Central: JUNE UPDATES!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile CN Central: JUNE UPDATES!

    Summer ~



    ((((((HUGS TO ALL)))))) ~

    Seems like only yesterday, we were scurrying around wrapping Christmas presents and decorating, and here it is the cusp of Summer.

    So, how is everyone? What are your plans for the summer? Vacations in your future?

    To us a vacation is sleep. Jon's still the Insomnia King. He's had 2 days in a row where he's been awake over 24 hours and needed .5 mg of Ativan to help him get to sleep. Then, he only sleeps for 6 or 7 hours.

    Jim and I skulk around the house trying to be quiet. We're eating snacks, since we can't cook and make noise in the kitchen, which is near his bedroom. We're expert whisperers now.

    Ah, but today the silence was broken by Bee Wranglers, who had to cut up the floor of Jim's woodworking shop, where he once crafted amazing Native American inspired flutes, to retrieve a large beehive. Jon must have been exhausted, because he slept through the sawing, drilling, and general noise.

    We are saddened that we had to kill bees, but they had become aggressive. They were enticed to build their hive here by our neighbor's tall blooming tree. Our neighbor used the term "africanized bees."

    https://en.wikipedia.org/wiki/Africanized_bee

    Our neighbor initiated calling the exterminator (not a bee specialist) on 5/20, the day after Jon's 25 minute seizure, and so began the slaughter of the bees. The insecticide sprayed that day didn't kill the bees, nor deter them. So today was a challenge for the bee wranglers.

    We can't return to Jim's workshop for awhile, as we have to let the fumes and bees die down. The entrance at the bottom of Jim's workshop has been closed off now, with an anti-pheromone paint on everything around it.

    Because, you know. We just didn't have enough stuff going on in our lives.

    Jim's left eye is healed, and he has his license. But his right eye cataract is getting worse, so we'll be doing this again in a few months.

    We are still waiting for Jon's insurance to authorize the PT visit to address Jon's lymphedema. And Jon's insurance denied payment for the replacement suction machine, which we got in an emergent, urgent situation, after I spent 6 hours on the phone trying to get it. Jon was on 2 ltrs of O2, and his SATS were struggling to stay above 75. Suction machine broke. Needed a replacement. I have a solid case to fight this, especially since Jon has a trache. It's just that I don't want to have to do it.

    Meanwhile, all of our remodeling plans are on the back burner again, because we can't predict when Jon is going to sleep. And we still have to schedule the termite extermination. A giant job for us.

    I'm going to pull up a chaise under that umbrella and have a smoothie. Want to join me?



    All are welcome!



    Come claim your awaiting smoothie and share the latest from your world ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    REALLY COOL UPDATE:I may have mentioned this in the other thread, but I had a really awesome day a few days ago. My teacher with the stroke asked me to come see him. I figured he just wanted to see me to say hi etc as always but this time he surprised with a GIFT! I’d tell you what it is but it probably would not make much sense in a written form LOL. Basically it’s related to what he was teaching us around the time he suffered the stroke. I was so honored he thought of me! He wanted to thank me for supporting him through his recovery by giving me the gift. I had no idea that my support meant so much to him! He looked wonderful! No more swelling,twitching,or odd eye, head or neck movements. He kept his head and eyes focused in my direction the entire time. He looked the same way he did before the stroke and had a lot of energy. To know how close he was to dying,and to see him go from looking nearly too physically weak to stand, to being so strong and fit is amazing! I think he’s been working out or something because he seems more toned and I think he lost at least 5 lbs which I hope will help prevent him having another stroke. It was as if the stroke never happened. However he did tell me that he now has official accommodations for his disability where he works so he can save his energy,I think it allows him to not have to walk or stand too much or do anything really physically demanding, so I guess he still feels the effects of the stroke even though he didn’t have any outward signs of the disability. I’m proud of him for using the resources he needs to prevent those awful dizzy spells. I'm so thankful he's alive and doing so well!

    I also met 3 new fans who basically went into total fan girl mode over my work! hehehe. I plan to do some new projects and travel in summer but these plans are not finalized.

    Rose, Thanks! Back in December my teacher with the stroke looked me straight in the eye as best he could(his eyes rolled a lot that day) and told me he loved teaching for exactly those reasons. Glad Jon slept and Jim is healing well. I pray for no more seizures. You are better off getting rid of the bees, but I'm a big animal lover so I understand why you are sad.
    Last edited by funnylegs4; 05-31-2016 at 09:55 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    How very nice of your teacher to give you a meaningful gift to express his gratitude for your support. I'm happy to hear that he is recovering well, and that his new job is accommodating his needs so well.

    So, you have fans now, eh?! That's great! Let's us know where you end up in your travels this summer!

    Well, the problem is that Jon is NOT sleeping, actually. We've had to give him .5 mg Ativan two days in a row, after being awake for over 24 hours each day, and today, after being awake 18 hours, he slept for 4 hours, without Ativan. It is a continuing problem, for which we have no solutions.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    How very nice of your teacher to give you a meaningful gift to express his gratitude for your support. I'm happy to hear that he is recovering well, and that his new job is accommodating his needs so well.

    So, you have fans now, eh?! That's great! Let's us know where you end up in your travels this summer!

    Well, the problem is that Jon is NOT sleeping, actually. We've had to give him .5 mg Ativan two days in a row, after being awake for over 24 hours each day, and today, after being awake 18 hours, he slept for 4 hours, without Ativan. It is a continuing problem, for which we have no solutions.

    Love & Light,

    Rose
    I see. My mistake. I am familiar with insomnia. It's rough for the people who live with it and can be quite disabling. I heard that insomnia can be caused by a large amount of fast access electric signals in the brain, so I wonder if his insomnia and seizures are caused by a similar source? Just a theory.
    Yeah evidently I have fans. I was leaving an appointment when 3 lovely ladies were like "Wait!" and preceded to fan girl LOL. That's never happened before. I'll certainly keep you updated.
    I completely agree! I'm so glad he took my advice to get accommodations if he needed them. I will treasure his gift forever. It is one of the most precious and meaningful gifts I have ever received. Thanks Rose!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Wow can't believe it's June already! This year has just been flying by.
    Rose, I hope that Jon's issues are getting resolved. Sleep is so important and it's even harder when no one is getting sleep. It's so sad that you have had to fight every step of the way for what Jon so obviously needs. It' just so exhausting.
    A couple weeks ago I saw the craziest thing ever... It was a very large swarm of bees. I couldn't tell what kind. First I heard the loud buzzing. I found the swarm just above our burning bush. It swirled within itself and thee whole warm moved slowly. It was o amazing I followed it for a long a I could. I wished there was someone else with me to share it with it was so amazing to see.
    Funnylegs, I'm so happy for you and your teacher. It's great news o hear how well he's recovering. He must have really felt your support and compassion at a time when he needed it. What a thoughtful thing to do giving you a gift. Wow sounds like you'r a "rock star" with fans and everything! Glad things are going so well!
    For us... Kathleen's prom is tonight! We're very excited. My sister in law is coming to do her hair and nails. I will post pictures as soon as I can I'm sure I will have tons... Patrick and I went to Maine with my sister and her husband over the weekend. It was a very fun and relaxing weekend. Just getting 2 days away from the usual business of my schedule was great. We ate out every meal and enjoyed a few glasses of nice wine. Maine is such a picturesque coast I love it.
    13332905_10208831572288553_2845571246635586405_n.jpg13325463_10208831572048547_6975062959500920787_n.jpg13315290_10208831571728539_2311723734788852336_n.jpg
    Stay tuned for prom pictures!
    Mary Grace

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    ((((((Hugs to All)))))) ~

    Funnylegs4 ~

    I don't know what "fast access electric signals " are. If they are what I think they are, does it pertain to being surrounded by electrical machines? Because Jon is: his bed, mattress, lift, O2, suctioning, nebulizer, TV, cable, DVR/Blu Ray, Stereo, lights. I've often wondered about that, but we have no choice. He needs all of this equipment.

    I am more inclined to believe that Jon's condition is the result of his undiagnosed progressive condition. He is nearing 50 years old, and that's quite incredible, given the odds against him since birth.

    His insomnia could be caused by hypothyroidism, lymphedema, neurological changes, pain, lack of physical stimulation although we do our best, the garbage in his feeding formula (sugar, soy, corn), his seizure meds ... the list is endless.

    It could all be hormonal, since most of Jon's crises have occurred at highly hormonal years ( ages 2, 13, 18, 26, 40s). He has an untreated prostate issue. Maybe that's a factor.

    As I've often said, it's like throwing darts, blindfolded, in a dark room.

    We just take each day as it comes and pray for the best.

    Just a reminder ~ I'm one of your first fans, so I will be able to say someday, "I knew her when ..."

    Mary Grace ~

    Love those photos from Maine, and so glad that you and Patrick were able to escape for a few days of relaxation. Did you stay at the Lighthouse in the photos? That would be a fun B&B, if it is.

    Can't wait to see Kathleen's Prom photos! I'm thinking that Kathleen out-danced everyone there, had the biggest smile and the best time of all in attendance! Please post MANY photos!



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thanks Mary Grace! We all kept saying we needed our teacher but maybe he needed us even more. Such lovely pictures!

    Rose, yes you are one of my first fans and I won't forget that! Oops sorry for my crappy description. I meant some people produce too much electricity in their brain or their neurons fire too often and this can lead to sleep problems and seizures. That's why I wondered if Jon's neurons are firing causing both. The reason for the extra electricity is not exactly known but it could be from brain damage or a whole host of other things. I read it in a psychology book but the name of the book escapes me. Speaking of thyroid, my thyroid was high on my blood test a few months ago but now it's perfectly normal. Can the thyroid numbers or whatever be high because of diet or something? They could not tell me why so I'm like What the heck?

    Do you ladies have any thoughts on that new movie "Me Before You"? Just curious.
    Last edited by funnylegs4; 06-04-2016 at 12:13 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Funnylegs, I actually went to see Me Before You last night with my daughter. We both read the book and had been long awaiting it's movie debut. It never occurred to me when I read the book that this would be controversial to be honest. I read for entertainment and it did just that. It tells a STORY and it was actually mostly light and funny. It in no way promotes assisted suicide. There are short conversations about he character's struggles and years of pain (but doesn't dwell on it) and reasons for despair. I don't want to give it all away. It was a love story. If we tried to make every movie "politically correct" nothing would ever be made. A movie about slavery doesn't "promote" slavery just as this movie does not promote assisted suicide. It merely tells the story. If a good movie creates conversation about a tough subject, makes you think and feel many emotions, then I assume it's done it's job. The actors were great, had great chemistry were funny and I'm not giving anything away by saying it made me cry too. It's not a epic blockbuster but it was true to the book. As I said I don't want to give it away so I'll just say it was about more than just giving up on yourself...
    Mary Grace

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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    What was the difference in your thyroid results? Was it significantly higher? Diet does affect thyroid function. Another possibility is lab error.

    I don't know whether we could find out whether Jon's neurons are firing too frequently, but even if we could, what would we do to correct that? Likely medication of some kind, an add on to his 3 AEDs. It's probably a result of his underlying undiagnosed condition, and/or hypothyroid, lymphedema, even seizures.

    I haven't read the book or seen the movie, but I did read a lengthy, detailed critical review of it. The author is disabled and a disabled rights activist. One of her primary complaints is that the author of "Me Before You" is not disabled, nor familiar with anyone, who has a disability. Additionally, the MBY author didn't research assisted suicide among persons with disabilities, before writing the book.

    Until I have a chance to see the movie on cable TV, I can't offer an opinion of it.

    Mary Grace ~

    Thank you for sharing your take on the movie and the book. It's interesting that your reaction is exactly opposite of the author of the critique of the movie.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Probably the most exciting thing that's happened in the last month is that I've been on national TV highlighting accessibility issues around the city in which I live. That caused somewhat of a stir. Other than that, just working, paying bills, trying to navigate being an adult while feeling like I don't know what I'm doing...

    I refuse to see Me Before You, but for what it's worth, here is my take on it. I posted this on Facebook and surprisingly it's been shared almost 150 times. I was inspired to write this because I remember very clearly and painfully what being a teenager with a disability is like, including being told to my face that people would rather die than live the way I do.

    Imagine for a moment you are a teenager with some kind of disability.
    You, like most teenagers, are insecure in yourself. You just want to fit in.
    At school, you feel like an outcast. You can't go to many parties because the venues aren't accessible. Sometimes the others call you names. You missed out on a class trip recently because it was "too hard" to accommodate you. The teachers don't have the same expectations for your career prospects. You are not expected to go to university or indeed have a career.
    At home you rely on family members to help you with basic things your siblings were doing years ago. You hate it.
    Me Before You comes out. You've heard it's a romance and you like the look of the guy. He's disabled, like you.
    You see it. In the end, he kills himself because he'd rather be dead than disabled. People around you are dabbing their eyes as they exit the cinema. You catch one of them looking at you. "I'm so sorry," she says "It must be so hard." "I'd hate to be like that," you hear others say. They stop and stare when they see you.
    At school, people have seen it too. You hear them talk about it and sometimes hear your name mentioned. One day, you're heading back to class at the end of a break and you pass a group of classmates.
    "Hey," one of them says, "You seen that movie with the disabled person in it?" "Yeah," you say, hoping to be invited next time they see a movie. "Maybe you should do what that guy does and kill yourself. Better for everyone eh?" The words ring in your ears.
    "Maybe" you think. Like many teenagers, you've thought about it before.
    On particularly hard days, you think about the movie and what people at the cinema and at school have said. You're a burden. You're worthless. You're better off dead.
    One day, you go into the bathroom, take out your dad's pills and....
    Me Before You may be "just a movie" but its messages are extremely damaging and could have very real consequences. Shame on Hollywood. They should be doing so much better than this.
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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