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Sunday, April 6, 2014
Visit Scott's CaringBridge Site
Friday, March 28, 2014
A long days night via Werdsmith
I was up all night in the can. Call it what you will but last night my relationship with it became inhuman.
I'd be running down and think I was finished and come back to bed and a second later back running down.
I was exhausted.
I had a rice heating pad on me and took a Xanax to relax because I was in so much pain. A pack of Pampers wouldn't have hurt either!
Just sayin.
Scott was up and down with me. At first I was sick from dumping syndrome when I ate some birthday cake. That means what's in your stomach jets into your rerouted guts super fast and take it from me, gastric bypassed guts don't like sugar straight from the source.
I thought THAT would make me die. My pulse was unbelievably high and I even nearly yakked.
Next thing I know, THATS over and my guts are swelled out like I'm about to have a small litter of Great Danes! I thought I'd die. I couldn't even sit up on the toilet!
I applied some heat and settled in for nearly 7 solid hours of shuttling between bed and the loo.
I put warm therabeads (a kind of eye compress) on my eyes and slept all morning, got up and the slept all afternoon. I still felt like I wanted to die.
I even bargained with Gd that if he'd let me live, I'd give up cake forever! I later had a small piece of dark sea salt caramel chocolate to cheer up my mouth and I am sure I heard Gd snicker as I went into dumping syndrome again.
Really Gd?
After Scott came home, he took me to Med Express. I heart them. I was diagnosed with a gastro virus, topped off with a bag of saline and a hit if anti nausea meds and off I toddled.
Scott made it home for the basketball festivities of the Sweet Sixteen!
The only downer was that my insurance only allows me 6 scripts per month and I couldn't get the meds they prescribed (poverty sucks!). I have some nausea meds left from the after effects of the lumbar puncture and I'll survive on Imodium I'm sure.
I am slowly proving that I am a science project for sure!
I'd be running down and think I was finished and come back to bed and a second later back running down.
I was exhausted.
I had a rice heating pad on me and took a Xanax to relax because I was in so much pain. A pack of Pampers wouldn't have hurt either!
Just sayin.
Scott was up and down with me. At first I was sick from dumping syndrome when I ate some birthday cake. That means what's in your stomach jets into your rerouted guts super fast and take it from me, gastric bypassed guts don't like sugar straight from the source.
I thought THAT would make me die. My pulse was unbelievably high and I even nearly yakked.
Next thing I know, THATS over and my guts are swelled out like I'm about to have a small litter of Great Danes! I thought I'd die. I couldn't even sit up on the toilet!
I applied some heat and settled in for nearly 7 solid hours of shuttling between bed and the loo.
I put warm therabeads (a kind of eye compress) on my eyes and slept all morning, got up and the slept all afternoon. I still felt like I wanted to die.
I even bargained with Gd that if he'd let me live, I'd give up cake forever! I later had a small piece of dark sea salt caramel chocolate to cheer up my mouth and I am sure I heard Gd snicker as I went into dumping syndrome again.
Really Gd?
After Scott came home, he took me to Med Express. I heart them. I was diagnosed with a gastro virus, topped off with a bag of saline and a hit if anti nausea meds and off I toddled.
Scott made it home for the basketball festivities of the Sweet Sixteen!
The only downer was that my insurance only allows me 6 scripts per month and I couldn't get the meds they prescribed (poverty sucks!). I have some nausea meds left from the after effects of the lumbar puncture and I'll survive on Imodium I'm sure.
I am slowly proving that I am a science project for sure!
Created with Werdsmith.
Sent from my iPhone
Tuesday, March 25, 2014
Eggs eggs eggs - life on a ketogenic diet
There's a lot to be said for the ketogenic diet. Mine is personally structured to give me macros of 90g of protein, 20g of carbs and (yes, you're reading this right) 90g of fat. I am usually around 1250 calories or so a day.
And while there is a lot to be said for the diet, I can sum it up in one word - eggs!
I have been following this eating plan since March 9. I have lost about 2-5 lbs depending I when I hit the scale. That pales though when looking at the most important change - my blood sugar levels are NORMAL and stay that way!
May I hear a collective Hallelujah? Thank you, thank you very much!
Despite everything else going against me (i.e. white matter issues in my gray matter, seizures, deep dark depression, etc.) this has actually been a high point.
I failed my glucose tolerance test miserably. At my second hour draw, my glucose was at 40. I knew it was low but still. That's SeizureLand people!
So after my neuro told me this was my number one resolvable issue and to get myself to the endocrinologist post haste, I resorted to Dr. Google and her friends, the Cleveland and Mayo Clinics. I figured I'd have to wait 4-6 weeks for an appointment anyway...
Well, after studying everything I could from various hospitals, medical journals and Yahoo Answers, I kept seeing "ketogenic diet."
I scoped it out and had the calculators figure out my macros of 90/20/90 (1250) - don't wince. I know you are but don't. Not yet anyway.
Basically it's Atkins without the urge to gnaw on a tree. I have a little app on the iphone where I log my food and keep track of these macros. I'm not especially a meatatarian so that has involved consumption of dozens of eggs and millions of slices of cheese daily.
One night I was short on fat and actually considered drinking a 1/8 cup of ranch dressing! Fortunately, when I am low on protein (as if that's likely which it isn't but yes, it HAS happened) I can make a quick protein shake to get the protein in.
This also works well since my stomach is the size of a teacup because of my Gastric Bypass RNY surgery (another group hug please because I does love me my bypass!) I can't eat a lot at once but what I'm eating doesn't take up much room (6 eggs? Get outta here!) and I feel full a LOT longer PLUS my blood sugar doesn't budge.
According to the research, despite the enormous amounts of fat I'm eating, my blood lipids shouldn't be affected.
The overall goal is to stop my body from being dependent on glucose for it's main fuel source. That's basically defined as what I eat I use for fuel and the rest is reserved for the next time I'm on a desert island. At this point, because you can eat a small metric crap ton of carbs before you feel full and then crave and eat even more, Captain Insulin flies in to save your liver. And if you're like me, your blood sugar drops so low you have a grand mal seizure that even Underdog cannot save you from! Captain Insulin has job and can be very heavy handed!
With the ketogenic diet, after about two days of eggs and cheese, you go into a state if ketosis where your body isn't worrying you about where it's next meal is coming from...it basically starts, shall we say, living off the land, and instead of using what you're eating for fuel and then demanding more, it starts to burn the fat you already have.
Cool huh?
Obviously there's more to it. You'll pee like a racehorse after a 2 miler in the rain, you'll be so thirsty you will drink things you never considered (water, anyone?), you'll contemplate just slamming back the salad dressing and chugging it if you're low on fat, but basically you end up getting the hang if it and get a little more energy and there you are: ketosis!
Now if you think I am certifiable about this, I want to say: I checked with my doctor who approved this and followed up with my neuro who approved the macros I set up. Don't ride without training wheels kids...talk to your doctors!!!
So here's my deal today. I have been sick for a week now since a lumbar puncture took some brain fluid I probably didn't need to lose. I've had headaches like Russia rolling through Poland. Today though I fried up 3 eggs and 3 or so egg whites in some olive oil, put a slice of cheese all over it, made my tea (with stevia because you don't eat sugar at 20 carbs!), and had breakfast. I've tried the breakfast meat routine to liven things up but I yakked up the sausage and ZoMG the price of bacon!!!!
I think I'll make egg and guacamole salad for lunch. Usually at dinner I just eat meat and a bit of veg. If I'm hungry I'll have milk or sugar free pudding with 5g of carbs.
If I do get hungry I do eat more....just ketogenically. Sometimes i do admit to a square of 70% dark chocolate caramel sea salt candy from Trader Joes :-).
A girl has to live, right?
And whereas I used to hate Pesach (Passover) as the holiday of eggs, cheese and matzah? Now I'm kind of looking forward to fancy Seder meals that liven things up and maybe even a few fun desserts I ordinarily wouldn't have but hey, it's a holiday right?
It IS a nasty little diet. I'll admit that! I want to yak eggs and the variety is nil (yes I DO eat raw hot dogs) but since I started my sugar hasn't slipped or dipped or even hinted at going south. I'm at 95-101 and feel pretty good. When I DO feel funky I know it's my neuro issues now and not my endo issues which in a weird way is comforting.
I do yoga more now than I was and I'm enjoying it. I know I won't feel like crap from a low glucose level after!
Scott is taking me to Florida in two weeks and I'm a little concerned but I figure they have eggs and raw hot dogs there with some cheese sticks thrown in for variety.
So I'll keep you posted. For me this has been a great happening. I really was so debilitated by my low glucose I could hardly function and while I won't go so far as to say I have everything back to where it was before these evil sugar drops started, I feel more comfortable when I'm out and again, it's reassuring to pull out another tangle in the whole neuro/white matter disease/seizure ordeal.
Now, I just wish I could get the Incredible Edible Egg song out of my head!
And while there is a lot to be said for the diet, I can sum it up in one word - eggs!
I have been following this eating plan since March 9. I have lost about 2-5 lbs depending I when I hit the scale. That pales though when looking at the most important change - my blood sugar levels are NORMAL and stay that way!
May I hear a collective Hallelujah? Thank you, thank you very much!
Despite everything else going against me (i.e. white matter issues in my gray matter, seizures, deep dark depression, etc.) this has actually been a high point.
I failed my glucose tolerance test miserably. At my second hour draw, my glucose was at 40. I knew it was low but still. That's SeizureLand people!
So after my neuro told me this was my number one resolvable issue and to get myself to the endocrinologist post haste, I resorted to Dr. Google and her friends, the Cleveland and Mayo Clinics. I figured I'd have to wait 4-6 weeks for an appointment anyway...
Well, after studying everything I could from various hospitals, medical journals and Yahoo Answers, I kept seeing "ketogenic diet."
I scoped it out and had the calculators figure out my macros of 90/20/90 (1250) - don't wince. I know you are but don't. Not yet anyway.
Basically it's Atkins without the urge to gnaw on a tree. I have a little app on the iphone where I log my food and keep track of these macros. I'm not especially a meatatarian so that has involved consumption of dozens of eggs and millions of slices of cheese daily.
One night I was short on fat and actually considered drinking a 1/8 cup of ranch dressing! Fortunately, when I am low on protein (as if that's likely which it isn't but yes, it HAS happened) I can make a quick protein shake to get the protein in.
This also works well since my stomach is the size of a teacup because of my Gastric Bypass RNY surgery (another group hug please because I does love me my bypass!) I can't eat a lot at once but what I'm eating doesn't take up much room (6 eggs? Get outta here!) and I feel full a LOT longer PLUS my blood sugar doesn't budge.
According to the research, despite the enormous amounts of fat I'm eating, my blood lipids shouldn't be affected.
The overall goal is to stop my body from being dependent on glucose for it's main fuel source. That's basically defined as what I eat I use for fuel and the rest is reserved for the next time I'm on a desert island. At this point, because you can eat a small metric crap ton of carbs before you feel full and then crave and eat even more, Captain Insulin flies in to save your liver. And if you're like me, your blood sugar drops so low you have a grand mal seizure that even Underdog cannot save you from! Captain Insulin has job and can be very heavy handed!
With the ketogenic diet, after about two days of eggs and cheese, you go into a state if ketosis where your body isn't worrying you about where it's next meal is coming from...it basically starts, shall we say, living off the land, and instead of using what you're eating for fuel and then demanding more, it starts to burn the fat you already have.
Cool huh?
Obviously there's more to it. You'll pee like a racehorse after a 2 miler in the rain, you'll be so thirsty you will drink things you never considered (water, anyone?), you'll contemplate just slamming back the salad dressing and chugging it if you're low on fat, but basically you end up getting the hang if it and get a little more energy and there you are: ketosis!
Now if you think I am certifiable about this, I want to say: I checked with my doctor who approved this and followed up with my neuro who approved the macros I set up. Don't ride without training wheels kids...talk to your doctors!!!
So here's my deal today. I have been sick for a week now since a lumbar puncture took some brain fluid I probably didn't need to lose. I've had headaches like Russia rolling through Poland. Today though I fried up 3 eggs and 3 or so egg whites in some olive oil, put a slice of cheese all over it, made my tea (with stevia because you don't eat sugar at 20 carbs!), and had breakfast. I've tried the breakfast meat routine to liven things up but I yakked up the sausage and ZoMG the price of bacon!!!!
I think I'll make egg and guacamole salad for lunch. Usually at dinner I just eat meat and a bit of veg. If I'm hungry I'll have milk or sugar free pudding with 5g of carbs.
If I do get hungry I do eat more....just ketogenically. Sometimes i do admit to a square of 70% dark chocolate caramel sea salt candy from Trader Joes :-).
A girl has to live, right?
And whereas I used to hate Pesach (Passover) as the holiday of eggs, cheese and matzah? Now I'm kind of looking forward to fancy Seder meals that liven things up and maybe even a few fun desserts I ordinarily wouldn't have but hey, it's a holiday right?
It IS a nasty little diet. I'll admit that! I want to yak eggs and the variety is nil (yes I DO eat raw hot dogs) but since I started my sugar hasn't slipped or dipped or even hinted at going south. I'm at 95-101 and feel pretty good. When I DO feel funky I know it's my neuro issues now and not my endo issues which in a weird way is comforting.
I do yoga more now than I was and I'm enjoying it. I know I won't feel like crap from a low glucose level after!
Scott is taking me to Florida in two weeks and I'm a little concerned but I figure they have eggs and raw hot dogs there with some cheese sticks thrown in for variety.
So I'll keep you posted. For me this has been a great happening. I really was so debilitated by my low glucose I could hardly function and while I won't go so far as to say I have everything back to where it was before these evil sugar drops started, I feel more comfortable when I'm out and again, it's reassuring to pull out another tangle in the whole neuro/white matter disease/seizure ordeal.
Now, I just wish I could get the Incredible Edible Egg song out of my head!
Created with Werdsmith.
Sent from my iPhone
Saturday, March 22, 2014
Wet Floors via Werdsmith
have three boys living in the house so I get wet spots around the toilet. It's gross and nasty and I'd never put my toes in my mouth (as if) but I get it.
Today, I am a little more than grossed out and very curious.
Wet spot by toilet- check.
Wet spot on landing heading up stairs to bedrooms?
What the hell....?
Today, I am a little more than grossed out and very curious.
Wet spot by toilet- check.
Wet spot on landing heading up stairs to bedrooms?
What the hell....?
Created with Werdsmith.
Sent from my iPhone
Of mice and lumbar punctures via Werdsmith
Well, all good intentions, right?
Evan had a meeting at 10am to discuss therapeutic needs. I felt great so I came down and was sitting cross legged in the recliner...when I got the worst stiff neck and headache I have ever since I was pregnant!
I put the recliner back and apologized profusely. I had Ev bring me Excedrin migraine but it didn't make a dent.
After the meeting I called the doctor. They prescribed compazine and fioricet but I had to wait for Scott to come home to bring it. In the meantime I took a clonopin and tried to sleep it off with no dice.
I DID watch a lot of Lie To Me on acorn.com!
When Scott did bring home the meds I took them and while the headache was still there, it was better. I couldn't stand the flickering tv as he watched basketball so I had sleep blinders on (I love them and have 3 of them!) and finally listened to a Miss Marple on iTunes and fell asleep.
No headache when I woke up but I feel it lurking so I took the meds. Scott is out of work clothes and the dishes have piled up so what's a girl to do? I'll hit that before the headache takes me down and at least soak the dishes so Ev can load the dishwasher.
I know this too shall pass and I should enjoy the down time but I'm bored, depressed and achey. Still, I'm here which is all that counts I guess.
Created with Werdsmith.
Sent from my iPhone
Friday, March 21, 2014
A day in the life... via Werdsmith
Wednesday I had a lumbar puncture. This is a result of "white matter abnormalities" in my brain which were seen as a result if the MRI I had to have because if weird, unidentifiable seizures I started having when I lived in Jerusalem.
Funny how getting a divorce kind of stopped the grand mal ones at least, but I digress.
Anyway. It wasn't a bad procedure. I chose not to ogle the long needle and I bent over the table instead of laying down. Well, until I broke into a hard sweat and wanted to hurl at least. Then fetal it was for me!
My doctor we shall call Dr. Awesome because he was amazing. He used the smallest sized child needle for me and while that made the collection longer, it also didn't hurt. Once we were well on our way I meditated myself into some zen happy place and seriously, I was in a zen state the whole time. It was like being in a twilight sleep.
Once it was over, I stayed fetal (with the risk of a post-procedure migraine and hurling again...no WAY was I moving!). Scott couldn't be there so Evan was playing nurse. I was frozen so I asked him to throw my coat over me.
"No Mother, mine was on me so it's warmer!" He was right. I cuddled up, put Israeli music on the iphone and laid there like a slug for two hours.
Finally Scott came and took me home and put me in bed. I was instructed to drink caffeine to close the puncture so Starbucks it was! I felt like a sore, supine princess.
I was still sore yesterday but finally the bandaid fell off and so now I am in light activity mode and out of bed!!! I can even do some light yoga but since Shabbat starts tonight I need to thaw the challah dough, set up the cholent and defrost the chicken. And cookies! Lots of cookies and applesauce cake :-)
If I get that far I am golden.
I am even planning to go to services tonight which is a huge deal.
Stay tuned!
Funny how getting a divorce kind of stopped the grand mal ones at least, but I digress.
Anyway. It wasn't a bad procedure. I chose not to ogle the long needle and I bent over the table instead of laying down. Well, until I broke into a hard sweat and wanted to hurl at least. Then fetal it was for me!
My doctor we shall call Dr. Awesome because he was amazing. He used the smallest sized child needle for me and while that made the collection longer, it also didn't hurt. Once we were well on our way I meditated myself into some zen happy place and seriously, I was in a zen state the whole time. It was like being in a twilight sleep.
Once it was over, I stayed fetal (with the risk of a post-procedure migraine and hurling again...no WAY was I moving!). Scott couldn't be there so Evan was playing nurse. I was frozen so I asked him to throw my coat over me.
"No Mother, mine was on me so it's warmer!" He was right. I cuddled up, put Israeli music on the iphone and laid there like a slug for two hours.
Finally Scott came and took me home and put me in bed. I was instructed to drink caffeine to close the puncture so Starbucks it was! I felt like a sore, supine princess.
I was still sore yesterday but finally the bandaid fell off and so now I am in light activity mode and out of bed!!! I can even do some light yoga but since Shabbat starts tonight I need to thaw the challah dough, set up the cholent and defrost the chicken. And cookies! Lots of cookies and applesauce cake :-)
If I get that far I am golden.
I am even planning to go to services tonight which is a huge deal.
Stay tuned!
Created with Werdsmith.
Sent from my iPhone
Monday, March 17, 2014
A honey badger mama...that's me! via Werdsmith
When you hear people describe themselves as single parents, generally, at least to me, a frumpy, 50 year old with a 21 year old son with autism doesn't exactly jump to mind. But, well, here I am...the poster frump for single moms of adult children with developmental challenges.
What else can I say?
What else can I say?
There have been so many heart wrenching struggles since we came back from our home in Jerusalem last year. My ex stole my son from me. Because my son is what I call a "pure soul" - what else could he do but go with his father? He was the child, after all, he had to obey.
I got him back in July and have had him since. I got him back despite my panic attacks and suicidal bouts of depression because he was all I thought of - his well being, his happiness, his soul.
I know he was happy to be with me. We had a summer filled with trips to the beach and baseball games with the Miracle League. Fall found us in the Adirondacks. My boyfriend filled a fatherly void Evan had felt acutely.
I saw that face and that smile and heard that giggle every day and u knew we had done he right thing.
But Evan still felt that, morally, he had an obligation to have what he called "a relationship" with his dad. He didn't know how to sort through the burning, raging anger he felt towards his dad to get to that point but he and his therapist worked diligently.
Finally at Christmas Evan spent time with his dad and his dad's family on Christmas Eve.Too bad his cousin felt the need to tell HER boyfriend how "weird" Evan was while Evan stood there.
(Some people just aren't raised right I guess. Sad but so true - especially when there are challenged people in the family.)
Anyway, that went okay but Evan had a list of rules, dos and donts. We made him give a copy to his dad so everyone was clear but that didn't work.
When Evan said no overnights - his dad didn't have a conversation with our child without pressuring him to spend the night. I knew Evan was afraid if being stolen again...like when we first came home, his father took him and that was that. I couldn't talk to or see him.
Well, we have continued therapy. And just when we thought we had an agreement we ALL could be happy about, Evan's father pulled the rug out from under his child again and texted US that he needed a break; that 5 hours wasn't enough time every other week; that he was emotionally and physically exhausted by all of this and was taking an unspecified break.
Uh HUH.
I'm sure you can imagine that when we let Ev know he launched into the stratosphere fueled by an anger and fury unimaginable! And yes, that's what happened.
Then his father decided his break was over (after a week - wtf?!) and said he'd be attending therapy with Evan.
So tonight the rage boiled over. Evan called his dad and while my kid is too polite and nice, he basically told him he didn't want to see him again. Evan said he would call him sometime after he told him he was done with him. I asked him why he'd say that if he was truly done? He said it was what people said when they knew they'd never call again and he thinks his dad knew that.
We will see.
So I am the single mom now even though sometimes he does call my boyfriend "dad" every so often.
I know I have an adult child and I know I should care that he has a relationship with his dad but honestly I don't. I don't want my son to struggle with another year of fury and false hope and promises never kept. A year filled with words from a father who cares more about HIS emotional health than that of his son who obviously is suffering.
He needs a father who only wants to see his face, see his smile and hear his laugh everday.
He doesn't deserve this, my boy. He deserves so much, much more than the fuckmuppetry he gets.
Mama Badger is peeking out of the nest and you can rest assured, she cannot keep quiet and working a dual agenda that can never be reconciled for much longer.
Sent from my iPhone
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