teddwebb

Shit happens every day, but it can always be wiped away…

I Love Cooking

I love cooking. Yesterday was a messed up day. I spent half of yesterday in and out of “the void” and there is a haunting terror of the void that I have come to realize that I am not ready to discuss yet, but that is for a different day. Today, we are talking about cooking. Yesterday, Sheri and I made homemade Beef and Broccoli from scratch from the Dr. Phil Diet Cook Book. Oh My God! It Was Delicious!!!

When I am in the kitchen and I am hand slicing high-quality meat into tiny-thin slices, carefully chopping fresh vegetables and putting them into various bowls so that they are ready for when I need them, and measuring out my spices and either mixing them into a tiny glass bowl or into several little glass bowls for when I need them, it makes me feel alive and happy. I feel like I’m one of those Chef’s on Iron Chef in my Kitchen chopping vegetables and having all these various bowls and pots and pans full of various items all cooking at precise times to make the meal come out as perfect as I can make it. I like to use all fresh vegetables for flavoring and keep my spices to a minimum. I LOVE having colorful foods, and Bell Peppers add lots of color and crunchiness to food and when properly prepared, don’t really add or detract from the main flavor, or add any of the spice or the “heat” from a bell pepper.

Oh, and don’t even get me started with Jalapeno Peppers. I have to thank my Friend Norm for turning me onto Jalapeno Peppers. However, I’ve taken what he showed me to an entirely new level of cooking. Flash cooked, grilled, stewed, “no meat, light meat, full meat (and heat),” it doesn’t matter, because I have mastered the Jalapeno pepper. I have grown to love the Habanero Pepper as well (and the Bhut Jolokia – used in weapons). People just do not realize the sheer pleasure of the flavorful Habanero that they are missing because they are afraid of one of the world’s hottest pepper. Granted, it does take several attempts before one learns to properly “control” and “respect” the Habanero Pepper before one can deliciously use either flavor only, or heat and flavor, or flavor with a touch of heat in recipe’s, and always be sure to wear surgical gloves when handling Habanero’s to prevent accidental eye injuries!

Each week, I sit down with my cook books and I pick out 7 recipes and I make out my grocery list. I can’t carry groceries and Sheri works 12+ hours a day, so I order groceries online and have them delivered. It only costs $6 extra to have the groceries delivered right to my kitchen and it’s worth EVERY DIME!!! All I have to do is unbag them and put them up! Hell! It’s worth the 6 bucks just to not have to carry all the soda’s, water’s and milk up the stairs, let alone all the other groceries! LOL!!!

Did I mention that I love cooking?

 

>ð|~@-@~|ð<

Ugly Bags of Mostly Water

I hate being me….an ugly sack filled mostly with water…

Sad smile

I was just floating, peacefully in a black void, not thinking, not dreaming.

Then all of a sudden, there was this frightening, scary rip in the fabric, the fluid I was floating in and I heard my voice, your voice, our voices mixed together.  It calmly said, "you need to get up and eat something…wake up and eat something…get up and eat something…" but I couldn’t understand those words at first, as if it was in a different language, a foreign language that I had never heard before because my brain wasn’t fully functional yet and I couldn’t process language so I didn’t fully understand what was being said at first but eventually I began to understand what was being repeated to me as the rip in the fabric got larger and I began to see an arm reaching towards me, trying to grab me and lift me up.

It was as if I was submerged in a thick, warm gooey fluid, but I could still breathe, but could barely hear and see and couldn’t understand the words coming out of the mouth of the person talking to me.  As the arm and hand got closer to me, I tried to reach out to the arm because it was trying to lift me out of the fluid.  It was my own arm and it was my own voice that I was hearing.  It was very surreal, but I was hearing my own voice and seeing my own self, my own arm reaching down towards me from above as I lay there, as if I was two people, one person submerged in a vat of thick "sensory deprivation liquid" and one person standing above me trying to lift me up and help me out of the fluid.

I heard myself saying over and over to wake up and to get up and to eat something.  But at first I didn’t understand what the voice was saying but I didn’t want to go with the voice because the fluid was so peaceful and calming and I wanted to stay, but the voice kept calling to me and the voice had a sense of urgency to it as if it was "very important" that I get up right then.  So I struggled and strained with all my strength.  It was so difficult and exhausting.  I reached up and grabbed the arm and the arm grabbed my hand and helped pull me up and out of the gooey darkness and into the light.

When I came up and into the light, I came into consciousness.  I was completely confused.  I was not where I had expected to be.  I was not where I had been in my last dream before I slipped into darkness.  Where am I?  I was afraid.  I didn’t know who I was.  What was my name?  Who am I?  What is this shell that I am trapped in?  How come I can only move these two arms and these two legs?  Why am I limited and confined within this shell? Where is soft shining light called Sheri?

And for the first few minutes after I "come back," I am in a half-n-half state of reality-hallucination.  I hear/see things that are not here and I don’t hear/see things that are here.  I look around the room and I see things that are not here and I talk to them.  I can’t walk and I can’t see clearly.  I can’t form coherent sentences.  Parts of my body are here one minute and are simply ‘gone’ the next minute.  It’s like I can feel my right arm and then all of a sudden, I can no longer feel my right arm or move my right arm, or it’s like I never even had a right arm, or like I was never born with a right arm, or like being born with a right arm would have been a freak of nature, so not having a right arm is normal.  It’s a very, very odd sensation.  And I can look down and I can’t see my right arm either!

Today, when I came to, I could see you sitting on your side of the couch and I could see me standing at the counter chugging water.  And I kept chanting over and over again, "I need to get up…I need to eat something…I’m going to get up and eat something…I need to get up…I’m getting up…I’m going to eat something…" and I kept looking around the room, but the bird cages where floating in the air and I couldn’t find my feet and I was so frustrated and scared but my legs wouldn’t move and the bird cages kept flying through the air and one of me kept standing and chugging water and telling me to get up and drink some water and I kept looking over and you and at my other self, but I couldn’t find my feet anywhere and I couldn’t move my legs at all and my damn face was numb as a son of a bitch, but that’s just me whining and nothing to do with my feet wondering off on their own!

Eventually, my eyes stopped moving around so much and I could focus.  When my eyes stopped twitching, you faded away and I realized that you weren’t there at all and I remembered that you went to work this morning.  I also realized that I was me and that I was not over there drinking water.  My legs started to tingle and hurt so bad, you have no fucking idea Babe.  The tingling was like when your legs go to sleep and then wake up, only like 100 times more painful.  Then my feet came back, with a vengeance – they were very, very angry at being detached for so long; they were very, very angry indeed!  A slow, painful, yet Novocain-like scalp numbing sensation crept up all over my head and I got a wicked, vicious headache and my eyes calmed down and the bird cages stopped flying around the room and went back to their normal positions in the room.  Everything was very blurry and I could hardly see.  Thank God For Spell Checker!!!

It’s taken me almost 2 hours to write this email.  I keep fading away and coming back to reality and continuing to write this email.  I only slip off into the darkness for a few minutes and when I "come back," it’s only for a few minutes and I’m not so confused, but I cant see and it takes about 5 minutes before my vision returns to normal enough for me to be able to type again and resume typing out this email and continuing on with it.  Thankfully, it’s only for a few minutes instead of an hour, so I don’t drift deeply into the void and "lose myself" so when I come back, I see this email in front of me and I remember what I was doing and I when my vision returns to normal, I read a little bit of this email and I remember what I was doing and then I can continue on with this email.  And this time, I’m actually AM going to get up and go freaking eat something!!!  And drink some damn water!!!

Star Trek had it right….Ugly Bags of Mostly Water…

>ð|~@-@~|ð<

The Day That Never Was…

On Tuesday, October 26th, I woke up, and I didn’t feel too hot. It was gonna be a “BAD DAY.” I’d not had a “BAD DAY” in quite some time and I wasn’t sure what to expect, but whatever it was, I knew it wouldn’t be good. I thought I could just tough it out. I told Sheri that I was OK. I argued with her all morning for her to go to work. I couldn’t even see clearly and could barely see enough to get my morning pills out, but I was stubborn and Sheri’s seen me in some pretty God-Awful ‘states’ and still be OK. I’ve been through hell and high water and through the pits of hell and the low waters that lie in the darkest corners of hell, places no one should ever have to go, but I’m tough, I’m a fighter, I can take it, bring it on, sock it to me, I’m OK. I hold my head high, put on a smile, put on the best attitude I can, try to be helpful to others. Shit! I’ve been in worse condition than the people I was helping, but I have a lot of Intestinal Fortitude and shear will.

My vision and the shaking were the worst parts. I was shaking just like I had Parkinson’s. My hands literally were travelling 2 inches in distance! Take a tape measure and stick your finger on it and slide your finger back and forth for 2 inches and you’ll see how bad I was shaking. Well, my vision was doing something very similar. The closest thing that I can think of to approximate how it looked is to look straight ahead, then close your eyes and quickly, very quickly twist/turn your head towards your right shoulder/to the right and in a downward motion, like you want to touch your chin to your shoulder when you finish turning your head, and as soon as you get your chin touched down, quickly open your eyes. That’s the closest thing to what my vision looked like that I can approximate to describe to someone to “get the same effect” and it was only a center to right downward arcing motion, except it was happening a couple times a second, way faster than you can do with your neck so you can’t get the full effect without breaking your neck! LOL!!! My eyes had ideas of their own that morning on what they wanted to do and they wanted to do the twist and get their party on that morning! Yeah, PARTY! Woo Hoo Baby!! We’re having a twitchy eyeball party! 🙂

I’d gone to see Dr. Clarke on Friday, October 22, 2010 and she’d put me on two new medications. One of these medications, we subsequently found out a couple days later, had an “in some rare instances” resulted in seizures in some people who already had seizure disorders. Well, as it turns out, Tedd is immune to every “normal” disease on the planet; Tedd is immune to and does not experience any of the “normal” side effects; Tedd is also immune to any of the secondary side effects. However, Tedd is ALWAYS susceptible to the RARE “in some rare instances” side effects in just about all medications! So unless the prescribing Doctor has read all of the detailed “Physician Prescribing Information” and “Pharmacology Information” on the medication, and has it memorized, along with the 18 other medications that I, just one of the hundreds of patients they have, and this just being one medication of hundreds that they prescribe, they are not going to notice this fact and will go ahead and prescribe it to someone who has a seizure disorder without even realizing it. The other medication was a long-shot and actually was a bit risky because it “screws up” a lot of normal people, but we are running out of options and medications to try, so we started me at the lowest dose available.

Well, everything was going pretty much status-quo – Tedd’s having some weird, strange, bizarre medical issue, he says he’s OK, he’s tough as nails, more stubborn than a mule, and has funky medical stuff all the time. And that’s what I thought too. I’m at the point now where Emergency Rooms are just about worthless to me. At the main ER that I usually get taken to, all the ER Doctors and Nurses know me when I come in because they’ve seen me so many times. Last time I was in there, one of the Doctors was holding my hand and said, “honey, we all love you around here, but you gotta stop coming to visit us!” LOL!!! I’m a very easy to get along with patient and I have them all rolling laughing, but I wouldn’t exactly say that I “enjoy” laying on a gurney in the ER for 4-8 hours every 6 weeks! Anyway, I’m allergic to all the MS Emergency Use medications that they could give me (that’s how I lost 30% of my vision – not the best way to discover that you’re allergic to corticosteroids), am already taking EVERY medication that they could possible give me, AND I’m already at the Maximum safe dosages for those medications. So really, when I go to the ER, I get fluids, CT scans that show what we already all know is there to begin with, warm blankets, some TLC, an EEG, an EKG/ECG, and they come and check on me and we tell jokes and try to make as much humor out of the situation as possible because the alternative is something I refuse to look at, and after X number of hours when I’m “stable,” they clear me to go home. So, tell me, why do I need to spend $100 for an Ambulance, $200 for the ER, $### for tests, when I could just recline on my comfy couch or lay in bed, drink the purified water that I like without getting poked one-more-time, and take the medications that I ALREADY HAVE AT HOME? So, the ONLY time now that I say, “it’s ER time,” is when normal people would be dead already. I have survived shit that kills normal people. Intestinal Fortitude. I always loved that saying, ever since boot camp; that has stuck with me and has helped me to “suck it up” and to “drive on hardcore, drive on.” My nickname when I was in the Army was, “Ranger Webb” because I was so freaking hardcore.

So, I sit down and eat my breakfast and I’m messing around on my laptop and listening to my favorite morning show and I remember the time is like 08:40 AM. The next thing I remember is “waking up” and it’s like 11:30 AM and I have no memory whatsoever of any kind of anything, no dreams, and I am one dreaming mo-fo (I dream all the damn time), but no dreams, nothing, no memory at all. The next thing I remember is Sheri is leaning over me, taking my laptop off of my lap and it’s 06:40 PM!!! I have NO MEMORY of that entire day. I was groggy and confused and dizzy and freaking out a little bit. I’ve heard of medication side effects, but this was ENTIRELY uncalled for! I lost an entire day. A full day no longer existed for me. It’s like that day never happened at all, very freaky.

Well, all day long, Sheri had not received a single update, “Status Report” email (my ‘mandatory’ check-in emails), or any random emails, nor had she seen any activity on any of my Facebook pages. That’s a Red Flag. I have NINE Facebook Accounts, all Solely devoted to Farmville, of course, because I AM a Farmville Junkie. And if I’m not farming, then I’m usually updating my Blog with some news, a medical status report, or some poem that’s been troubling my mind and I need to get it out, release it.

The problem is that Sheri hasn’t even been at her job for 3 months yet. One of the Main reasons they let Sheri go from her last firm was that she had taken 3 weeks of time off, all for me (doctor’s appointments, ER trips, picking me up at work when I had a bad seizure at my desk, etc.), and specifically stated that her work product was exemplary and got Letters of Recommendation from all the Senor Partners – it was her having to take time off for my broke-dick-gimp-ass-self – my fault. Well, she sat at her desk all day, wretched with anxiety over what to do. Does she risk taking yet another day off? She’s already had to take 3 days off for me and she’s been there less than 3 months. I said I was OK. I’m a fairly honest and good judge of my condition, but I did start new medications the night before, so that’s an unknown. What should she do? If she leaves, she probably will get outright fired from this job instead of laid off. My disability runs out in 5 months and we’re looking at another year to a year and a half of fighting the Federal Government over my SSDI. California has the highest unemployment rate in the entire country, 12% and there are Paralegals that have been out of work for over a year. Sheri got a job so fast because she’s well-known and comes Highly-Recommended from just about anyone you talk to in the OC, but if there are no jobs, there are no jobs. And there is not much you can do about that.

Now that I’m a little bit less “in a state of seize,” I’ve gone back and looked at some of Sheri’s posts. God, I feel so awful for her. You can just feel the anguish in her through her posts. Thank God that Sheri has so many Good Friends to rally to her side and provide her with comforting words of support during all of this because she has no family to talk to and support her. Sheri’s Friends are her Family. I have adopted them as my Family too and they come over on Thanksgiving and Christmas for our Celebration Dinners for all of us who don’t have anywhere to go on the holidays. It’s good to be loved by someone, to have someone care about you. Her friends provided her with great support during that long, agonizing day. There would have been nothing that she could have done if she had been home. I was OK, just unconscious. If I had gone to the ER, they would have woken me up, gave me fluids, told me to take the medication that I already have, gave me a large bill and sent me home. Um, OK. And then Sheri would get fired and we would be homeless. Nope, there was nothing Sheri could have done but sit and watch me snore! LOL!!!

When I was young and in the Army, I used to drink an ENTIRE bottle of vodka, a 750ml bottle of vodka BEFORE we would all go out to clubs and go partying. And while we were at the clubs, I would still buy drinks, just fewer drinks, but I would be drinking Everclear Kamikaze’s all night long (and that’s back when Everclear was 95% alcohol (190 proof)! I got alcohol poisoning 3 times and lived, albeit with blistered mouth, lips, nose, and agonizing pain for days, and wishing that I had died…but not learning my lesson until the 3rd time…3rd Time’s the Charm? Anyway, I NEVER blacked out or passed out, never. I eventually got tired and went to sleep, never blacked out or passed out, but I always woke up remembering everything, knowing everything that had happened. So this experience really shook me up and freaked me out, and it’s been three days now and I’m still shook up over it.

The Day That Never Was Haunts Me.

 

>ð|~@-@~|ð<

Tedd’s Freedom Run

Earlier this year, I was driving to work every day, working 12 hour days, and driving home. I would drive and do the Grocery Shopping. I like doing the grocery shopping. I always do a better job than Sheri. I always do most of the cooking too. I LOVE to cook! I also am TOTALLY ADDICTED to cooking shows on TV too! I can sit and watch Iron Chef all…day…long!!! And don’t even get me started on Cake Boss! Sheri is a Cake Boss Junkie! I think we have seen EVERY Cake Boss episode ever made.

A few months ago, I started noticing that I was having problems paying attention while driving and that I wasn’t quite able to process all the input coming at you while you’re driving. I’ve known that I have dementia for a long time. My Neurologist has known and Sheri has known, but no one ever wants to officially say it or tell it to your face until it’s pretty damn obvious to everyone that shit just ain’t right in your head anymore!

Anyway, I stopped driving for the most part and Sheri did most of the driving. Basically the only driving I did was short driving down to CVS and Albertsons (our grocery store), which are less than 1 mile away, and to the Bank and Home Depot, all within 5 miles. So all the driving I did was to places I always drove to; I always took the same routes and always went in the “slow traffic” part during the day.

Well, I started getting scared driving because I couldn’t pay attention to all the traffic around me, traffic lights, slowing down, taking off, dozing off while driving, daydreaming while driving, not being able to keep my car in my lane, and most of all, I kept having these episodes where all of a sudden I would have this realization, HOLY SHIT! I’M IN A CAR AND I’M DRIVING!!! WHERE AM I AND WHERE AM I GOING??? It was like I had woken up from a dream and when I woke up, instead of waking up in my bed, I woke up behind the wheel of a car speeding down the freeway at 80mph drifting over into another lane!!!

After the last scary episode, I swallowed a huge gulp of pride and decided that the risk of running over and killing a family full of little kids because I was too damn stubborn to stop driving just wasn’t worth it. So, I don’t have a car anymore and I’m a “shut-in” now.

I’ve been trying to keep myself busy, but I’m in a great deal of pain most of the time and am disabled so my options for going out and walking are limited. I can get out and walk a little in our complex, but there’s something rather depressing about walking around in a parking lot by yourself, afraid to walk too far from your house in case you start to have a seizure and need to get back home quickly, or in case you have a sudden wave of fatigue and almost collapse to the ground and can barely walk and need to be very close to your home otherwise you’ll just be stranded where you are until you gather your strength or until hours later when your wife gets home and can help carry/drag you back home.

Sheri and I looked into some inexpensive Respite care, but they’ve been unreliable, flakey and/or plain unavailable when we’ve needed them. I’ve joined half a dozen different “support groups” but I don’t quite “fit the profile” for most other people there so they can’t really relate to what I’m going through, or the sites are so flakey and slow to make them practically unusable.

Being a shut-in sucks. All of my friends are my co-workers. All of my co-workers live so far away from where I live to make driving to here impractical and I can’t go see them for lunch anymore now that I can’t drive and given the huge distance, they sure as hell can’t come pick me up for our “reunion lunches” anymore. Being a shut-in sucks bad! Sheri works long hours and doesn’t get home until around 6:30 PM almost every day! And she certainly doesn’t need to be burdened with having to take me out running to CVS and/or Albertsons to let me do my little errands and get my ‘out’ time.

Today, I tested out the “Tedd Freedom Run” to see if it was cost-effective and to see if it was feasible. I called a cab and had them take me down to my local CVS. I had them sit in the parking lot and wait on me while I went inside and browsed the few isles that I needed to in order to find the few items that I’d kept forgetting to order online because I didn’t quite know exactly what I wanted because I had to actually browse and see what was there.

Taxi Round-Trip From Home to CVS and Back: $30

Tedd’s Freedom from being a Shut-In: Priceless!

Today has been a very, VERY GOOD DAY!

Smile

 

>ð|~@-@~|ð<

Ah…it’s a beautiful morning…

The sky is clear and you can see forever.

The birds are singing and we have a lot of different birds up here.  It reminds me of those Discovery shows when they are in the Amazon Jungle!  LOL!!!

Sheri and I slept in a little late this morning cuddling.  I like to cuddle.  I’ve always been a big Teddy Bear Smile

Unfortunately, Sad smile  today is a rather high pain day.  I’m having a rather clear thinking day so far.  I hate dementia.  It sucks being 38 and having dementia, you know?  Anyway, I’ve come up with some good descriptions for 4 areas of pain that I have.  I have a lot more pain than this, but I’m tired of all this typing and can’t type anymore, so this is all I can describe for today.

I want you to take 5 freaking Phillips screw drivers and sit with them poking you in your spine, HARD, all freakin day long. 

And while you’re doing that, I want you to take a golf ball and press it at the base of your skull, right up at the top, just at the point where it connects to your spine, now take that golf ball and push it as hard as you freaking can into that hole there until you feel like you are going to POP your head off of your spine.

Take your thumbs and keep pressing on your eyes and releasing so that your eyeballs physically hurt inside their sockets and so that your vision is all psychedelic and weird and flashing white.

Take your right leg and twist it around sideways like you’re pulling a chicken leg off the chicken, and push it backwards at the same time so it’s stretched out, and hyper-extend your knee so that the pain in your knee cap screams every time your heart beats.

I think that’s a pretty good description of four of the 8 major pains that I have.  I’ve been trying to remember how to describe them better and trying to write things down and keep logs because my memory isn’t quite what it used to be.  Also, I’ve been doing it so that when I go to the doctor, I can actually tell them what’s wrong with me in a descriptive way that makes sense and that I can remember.

 

>ð|~@-@~|ð<

MRI 09.14.2010

Great News!  I have more brain death than ever before!  Yeah!  And what’s even more exciting boys and girls is that I have entire chunks of my brain that are now dead lumps of stinky rotted meat inside my skull in NEW AREAS where I’ve never had lesions before.  Yippy.

My lesions have pretty much always stuck to the same half a dozen areas in my brain and they pop up and go away and pop up and go away.  For the most part, they stay gone long enough for my neurons (brain cells) to be able to mostly heal.  That way instead of 100% brain death for each lesion, I’m only getting 10% brain death, nice and slow decay, except for my central gyrus where the big boy hit with a fury (that’s why I walk with a cane now).

Whenever I get an MRI Report, I always feel this sinking feeling in the pit of my stomach, like I’m going to throw up.  I’m both anxious to read the Report and afraid to read the Report.  And when I read the Report and I come to sections like this, my heart skips a beat, and sinks.  No one ever Expects The Spanish Inquisition!  …No one ever Expects Brain Atrophy!

“focal FLAIR hyperintensity in the juxtacortical white matter with involvement of the U-fibers.  There is enlargement of the adjacent sulci, compatible with focal atrophy….hyperintense lesion at the level of the left pericallosal white matter adjacent to the genu of the corpus callosum…”

Yummy!  Brains…brains…cold, dead, non-functioning, rotten, but stuck, trapped inside my skull brains… I need a “nano-zombie” to go in there and clean up all that yucky mess!  LOL!!!

When I got my first “black hole” (that’s what we call those little black spots on your MRI ‘atrophy’ that should be nice, happy, smart, living brain matter, but instead is just black, dead brain cells), it hit me really hard.  I broke down, sobbing uncontrollably.  It’s not every day that you look at an image of your brain and you see a spot that should be alive and thinking, but instead it’s dead and once brain cells, neurons die, they NEVER grow back.  I’ve had a few more smaller black holes here and there, but not as big as my first one.  However on this MRI, there are half a dozen or so.  I didn’t even finish looking through all the films on the CD.  I just stopped half way through.  I didn’t want to see any more.  There’s no point.

That’s funny because Dr. Clarke said the same thing when I asked her about getting an MRI more often.  She said there’s no point.  What good is it going to do?  So we don’t catch your brain when it’s in a highly active period.  So what?  If we did, there’s nothing that we could do because the ONLY treatment that you can do when you have a flair up of lesions is steroid infusions and guess who’s allergic to steroids?  Yep, me.  Isn’t that a bitch?  The only treatment available that “may” help slow down the lesions, is a treatment that I’m allergic to and made me go half blind when they infused me with them in the beginning before we all knew that I was allergic to steroids!  LOL!!!

Anyway, there’s the latest news on the MRI.  A couple new lesions and half a dozen or so new chunks of brain death.  I’m a little bit more senile today than I was yesterday.  I’m 38 and I have dementia and am getting as senile as an old man Sad smile

 

>ð|~@-@~|ð<

Changes to my Blog…

I’ve decided that in addition to me expressing myself with my shitty little rambling poems and stories, I’m also going to write anything I want on my Blog. 

What does that mean?

It means if I have a thought that I need to hash out or express to get off my chest, like “Reality Check,” then here is where I’m posting it.

It means I’m consolidating all my Blogs into this one, information, art, ideas, etc.

It means that I will be posting my health updates for my friends and family so they can stop by whenever they like to check and see “how is Tedd doing.”

I will be posting test results too for friends and family.  I have nothing to hide and it’s easier than sending out a bunch of emails.

>ð|~@-@~|ð<

More About Seizures

Secondarily Generalized Seizures


Seizures of this kind start as a partial seizure—that is, they start in one limited area of the brain. The forms they take vary as much as other partial seizures. But then (sometimes so quickly that the partial seizure is hardly noticed) the seizure spreads throughout the brain, becoming “generalized.” Here’s how a couple of people with epilepsy described their secondarily generalized seizures:

The seizures start with a tingling in my right thumb. In seconds, my thumb starts jerking. Soon, my whole right hand is jerking. I have learned that by rubbing and scratching my forearm I can sometimes stop the seizure. Other times the jerking spreads up my arm. When it reaches my shoulder, I pass out and people tell me that my whole body starts to jerk.

I only get these about once every 4 to 6 weeks. Oddly enough and as strange as it sounds, I can actually “fight off” a full Grand Mal that this type of seizure ALWAYS, ALWAYS, ALWAYS turns into by remaining calm, completely relaxing and letting go of all tension I have on every muscle in my body, and practicing controlled breathing techniques. Then I concentrate on just those muscles and gently flexing and stimulating those muscle groups, very slightly and gently, and messaging and stimulating those muscle groups to get my brain to start firing neurons to break up the seizure pattern before it runs haywire. It actually works quite well. Before I stopped being afraid of the seizure, it always followed its natural progression: twitching foot, twitching leg, twitching side, twitching body -> tonic-clonic, or twitching finger, twitching hand, twitching arm, twitching body -> tonic-clonic. However, once I began to understand that the seizure wasn’t going to kill me and it was nothing to panic over, I began to try these techniques to try to control the seizure and lesson its control over me and it works…85% of the time, that is! The odd thing is that it almost always begins in my right foot or my left hand. When I first got MS, it actually was my left had that started twitching and then my left arm.

Myoclonic Seizures

What are they like? Here’s a typical story: “In the morning, I get these ‘jumps.’ My arms fly up for a second, and I often spill my coffee or drop what I’m holding. Now and then my mouth may shut for a split second. Sometimes I get a few jumps in a row. Once I’ve been up for a few hours, the jumps stop.”

How long do they last? They’re very brief jerks. Usually they don’t last more than a second or two. There can be just one, but sometimes many will occur within a short time.

Tell me more Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. “Myo” means muscle and “clonus” (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle.

Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you’re just falling asleep. These things are normal.

In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics:

These are very similar to Simple Partial Motor Seizures except that these cause the muscles to contract quickly, causes large muscle groups to contract in tandem, causes entire limbs to jerk, and generally are limited to the first few hours after waking up in the morning. Myoclonic Seizures involve larger groups of muscles than Simple Partial Motor Seizures do and will do things like cause my ENTIRE arm to suddenly “jump up” or cause my leg to decide that it wants to take an extra step for no reason, whether I’m walking or just sitting still. Simple Partial Motor Seizures just cause a little twitching here and there. Plus, I only get Myoclonic Seizures in the morning after I wake up and they are usually gone by 11:30 or Noon. Myoclonic Seizures are all visible to other people and make me twitch like I have cerebral palsy or something, whereas Simple Partial Motor Seizures are tiny twitches that most people wouldn’t notice or can’t see because the twitching is a group of muscles inside my body.

Tonic-clonic Seizures (Grand Mal)

What are they like? Here’s a typical story from a parent’s view: “These seizures frighten me. They only last a minute or two but it seems like an eternity. I can often tell Heather’s going to have one because she acts cranky and out of sorts. It begins with an unnatural shriek. Then she falls, and every muscle seems to be activated. Her teeth clench. She’s pale, and later she turns slightly bluish. Shortly after she falls, her arms and upper body start to jerk, while her legs remain more or less stiff. This is the longest part of the seizure. Finally it stops and she falls into a deep sleep.”

How long do they last? Generally, 1 to 3 minutes. A tonic-clonic seizure that lasts longer than 5 minutes probably calls for medical help. A seizure that lasts more than 30 minutes, or three seizures without a normal period in between, indicates a dangerous condition called convulsive status epilepticus. This requires emergency treatment.

Tell me more This type is what most people think of when they hear the word “seizure.” An older term for them is “grand mal.” As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face. After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.

I haven’t had a full-blown one of these in several months, Thank God! These are the Seizures I fear most, as I expect most people who get seizures fear most as well. My first Tonic-clonic Seizure began with a Secondary Generalized Seizure in my Right Foot while I was in the kitchen one morning at the office at Word & Brown. I thought it was just a nervous jerk or some stupid MS thing that would stop in a minute so I was ignoring it and making my coffee. Then my leg started to jerk. I went on making my coffee. Someone else came in and saw my leg jerking around. I laughed and said, “isn’t that freakin hilarious? My leg’s all twitching and flopping around like a fish! Ha! Ha! Ha!” Then it moved up into my hip and began to tighten and become extremely painful and I asked for a chair to sit in. I said I’d be fine, that I just needed to sit for a few minutes and that it would pass. But then it worked its way up my side to my stomach and started causing my guts and stomach to start twitching and the pain in my leg was becoming excruciating and by this time my leg was bouncing around violently. I gave in and said, you better go get Norm. I need Norm. GO FUCKING GET NORM NOW. HELP! Norm came in. He saw me in that chair. I felt unbearable pain by this time and told him to call 911 or he told me he was calling 911. I don’t know what he said to me, but it was calming and that was the last thing I remember. Norm said my head shot back and I got stiff as a board and started spewing foam like the Exorcist and then started flopping like a fish. I don’t remember any of that. The only thing I remember is waking up on a gurney in the ER at St Joe’s all confused, not knowing where I was, who I was, and what was going on! That was my inauguration into the Realm of Seizures. It’s embarrassing, but I was folding panties when I had my last one a couple months ago. LOL!!! (Hey! I do ALL the freakin laundry so piss off you wankers!)

>ð|~@-@~|ð<

Reality Check…

I went to the neurologist today.

Reality Check…

She said that I was maxed-out on Hydroxyzine and that medical science had no other drug stronger or more effective for treating MS Pruritis, which is phantom itching. The entire left side of my head and neck itch constantly. It’s maddening. When it first started, it was all I could do to keep from taking a knife and carving my scalp off to make the itching stop. No matter how much I scratched, it had absolutely no effect. You see, it’s the damaged nerve cells in my brain that’s “telling” my brain that the entire area is itching, but there’s really nothing irritating the skin that’s causing the itching. So no creams, or salves, or ointments, or scratching is ever going to make it itch any less or go away.

Then Glory Be to God, my Neurologist found that a drug they give to drunks for the DT’s in rehab going through detox, or to nervous patients right before surgery to calm them down, actually has this weird effect on the neurons in MS People that slows down those “bad itching neurons” from firing so much, so you itch less and it becomes more bearable to live your life, still constantly itching, but not itching to the point of madness. You learn to stop scratching like a junkie and control yourself. You learn to stop thinking about that constant itch and to try to ignore it. However, my itching is creeping up again. Now it’s constantly on my mind, constantly itching, constantly having to control myself to keep myself from scratching and scratching and scratching until my skin is raw and bleeding…I must control myself. But the itching won’t stop or go away.

And today my Neurologist tells me that I am at the maximum safe dosage already, that there are no other more powerful drugs, that Medical Science hasn’t figured out how to fix it yet…that my itching is going to get worse and that there is nothing anyone can do to make it stop or to help me and that I must just endure the maddening itching forever. Science just discovered a couple weeks ago what kind of MS I have, let alone how to treat specific symptoms of it, so I’m screwed.

Reality Check…

Ever since I got MS, I’ve felt like my left arm is being drawn and quartered. Has anyone ever had bursitis with bone spurs with torn ligaments with decayed cartilage with a pulled trapezius muscle with a dislocated shoulder blade? Well if so, then multiply that pain by tenfold and that’s what being drawn and quartered feels like. I literally feel as though my left arm is being twisted and torn away from my body and all the muscles connected to my arm are all tight and in pain just like they would be if it were being torn away, and the pain radiates down my entire arm. Mostly it’s my triceps and biceps and forearms that hurt. Every now and then the pain makes it all the way down into my hands and it takes my breath away.

Reality Check…

When your hand has been chopped in half, you stop and pay attention! In fact, you stop breathing. You stop moving. You stop thinking. I think your heart even stops beating for a second or two because the pain is so excruciating. I never knew that you had so many “sensory” nerves in your hands until this. I always knew that you had a lot of sensitivity in your fingers, but I guess it never occurred to me that all those nerves in your fingers have to get there somehow…and they get there via your hands and there are a lot of nerves, places for your tricky brain to cause pain, in your hand. There’s nothing quite like being in the middle of a conversation and then having your hand chopped in half, and then having that half pulled apart, and then dipped into hot lava, and it lasts for 20 seconds to several minutes. It’s all I can do to keep from crying. It hurts so bad that I can’t even talk to tell Sheri what’s going on and why I’ve stopped talking. And when the pain stops and I can move and breath and speak again, sometimes all I can do is break down sobbing and crying helplessly.

Reality Check…

An Angel from Heaven in disguise as a Doctor in an Emergency Room gave me one of the only medications that has kept me from walking out into the ocean and ending my pain quickly. That’s called, Neurontin. It’s not a normal, “junkie-style” pain medication. You’ll never see this stuff on the streets. Neurontin is a Nerve Pain medication. It’s not an opiate like morphine or oxycodone. It works inside your brain to help make those damaged neurons/brain cells “feel less pain, or think they are in less pain” so that you “feel” less pain. Since there’s actually nothing physically wrong with you, pain medications have no effect on you whatsoever. I have an extremely high tolerance for pain. I have an 8mm bulging disk in my spine, and it’s just one of many bulging disks and I’ve been on Fentanyl and high-dose MS-Contin and neither one did anything for my neuralgia (that’s nerve pain, my MS Pain).

Reality Check…

Have you ever seen a hot cattle prod? Have you ever seen a 1,000 pound bull jump and holler when it’s stuck with a hot cattle prod? I have had a hot cattle prod pressed up against my left collar bone for 6 years now. I think all the flesh burned off years ago and the bone has been burnt to ashes and it’s just burning for fun now. LOL!!! Seriously though, this one just freaks me out so much that I don’t even know what to say about it or exactly how to describe it. It’s a freaky, painfully freaky feeling. It feels like my collar bone is on fire, like it’s being pushed into my body and is about to snap at any moment, and like someone is pulling on it trying to pull it out of my body, all at the same time. I told you it was a freaky! It feels like it’s pushing on my throat too and sometimes I have problems swallowing.

I can’t eat or drink because my throat muscles won’t function properly. It’s like that pressure my collar bone is pushing at the base of my throat has disabled my brains entire ability to swallow, or like I have simply “forgotten” how to swallow. Swallowing is labored and difficult, and sometimes I simply just am unable to swallow anything, even my own saliva.

Reality Check…

The pain I feel has been kept to manageable levels. Sometimes it hurts so bad that I cry or that it takes my breath away, or that I have to lay down or sit down, or that I can’t move, but most of the time, it’s just a constant pain that I feel, always. However, the Most Blessed and Holy Neurontin has been my Savoir throughout these past 6 years and has kept the pain at bay for 85% of the time. And 15% of the time in screaming agony is something I can totally handle, no problem given my options on the table!!

However, for the past few months, the pain has been growing, getting worse. Instead of being in agony 15% of the time, I’m in agony 45% of the time now. I had hoped that my neurologist would simply “wave her magical wand of Medical Science” and write me a prescription for something different, some new medication that I’ve not heard of, or change around my dosage, increase it or something, do something to help make the pain stop. But instead, she said that I was already at the maximum dosage levels that were safe for human consumption and that there were no other drugs available. Medical Science has not yet developed any new medications. In the past SIX YEARS Medical Science has not made a single tangible step forward. Oh yes, there has been progress in research studies in Canada and Great Britain, and in a study at UCLA but that doesn’t mean that there is a new “wonder drug” on the market, or A Cure. It just means that they’ve discovered some new quirky piece of information that helps them solve one more piece of the convoluted puzzle of Multiple Sclerosis.

Reality Check…

It’s going to take some “digesting” for me to come to terms with “you’re already maxed out on all the pain medications we have and there isn’t any other medical science in existence that can help you…so you’re just going to be in pain forever”…and it’s getting worse and more painful…and I’m not going to get more or a stronger dosage or some other medication that’s going to take the sharp, stabbing, screeching edge off the pain and just make it a bearable scream that you can tolerate after a while.

Reality Check…


>ð|~@-@~|ð<

About Seizures…

Simple Partial Seizure, Category Motor seizures, or simply a Simple Partial Motor Seizure


These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or automatic hand movements. The person may or may not be aware of these movements.

I have these constantly. They are so irritating and scary at the same time. They are scary because they are the precursor to a Grand Mal! Whenever I have a Grand Mal Seizure, it ALWAYS, ALWAYS starts out with a Simple Partial Motor Seizure. It’s irritating because some days I twitch and jerk around so bad all day long and my eyes twitch too so I can’t see well or read for shit and performing the most basic tasks, like wiping my ass becomes a freaking chore instead of a simple quick “thing you just do.” And try cooking and measuring out spices when you are randomly twitching and jerking every few seconds or at random intervals every minute or two! Mmmmmm nothing like SUPER GARLIC Spaghetti – Twitchy Tedd Style :o)

Complex Partial Seizures


Here’s a typical story: “Harold’s spells begin with a warning; he says he’s going to have a seizure and usually sits down. If I ask him how he feels, he just says ‘I feel it.’ Then he makes a funny face, a mixture of surprise and distress. During the seizure he may look at me when I call his name but he never answers. He just stares and makes odd mouth movements, as if he’s tasting something. Sometimes he’ll grab the arm of the chair and squeeze it. He may also pull at his shirt as though he’s picking lint off of it. After a few minutes, when he’s coming out of it, he asks a lot of questions. He never remembers his ‘warning’ or these questions. The seizures make him tired; if he has two in the same day, he often goes to sleep after the second one.”


They usually last between 30 seconds and 2 minutes. Afterward, the person may be tired or confused for about 15 minutes and may not be fully normal for hours.


These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person’s eyes are open and they may make movements that seem to have a purpose, in reality “nobody’s home.” If the symptoms are subtle, other people may think the person is just daydreaming.


Some of these seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure. Also called an aura, this warning seizure often includes an odd feeling in the stomach

I call these “Stomach Episodes” or “Stomach Zones” and when they start out, they are very, VERY uncomfortable and painful. The onset, the “warning” can last anywhere from a couple minutes to half an hour. When the seizure strikes, I turn into a “mind zombie,” a “drooling idiot” for a few minutes. When I return to normal, I’m always real, real tired and confused and I can hardly walk or perform basic functions for half an hour to a couple hours afterwards. I’m usually wiped out tired for the rest of that day and I’m not normal the following day or two and am tired for a couple days afterwards also. The worst part about these seizures is that they seem to be the most severe, or strongest/largest seizures because they are also almost always, without question, accompanied by a TIA (Transient Ischemic Attack or “mini-stroke”). Fortunately, I’ve only had TIA’s, which your brain can heal from unlike a stroke which your brain usually can’t fully heal from. So, I’ll have a droopy eye and a droopy mouth for a couple weeks while my brain is healing that blood vessel and the affected brain cells and nerves and slowly my eye and mouth return to normal…well mostly. I’ve had so many of them that I have a partial, permanent, oh so slight droopiness on my right side. Sheri may be able to see it, but I’d be surprised if she can. I can feel it in my muscles and the surrounding muscles. I just can’t relax my face and have those muscles automatically “pull” the corner of my eye and the corner of my mouth where they are supposed to be, so now they fucking droop god damn it. I’m 30-something (ask Sheri, she knows how old I am) and I’ve had so many “strokes” that I have a droopy fucking face! OK, enough whining…


>ð|~@-@~|ð<

Post Navigation