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What better way to start the New Year then a poem written for a friend who was taken much to soon; a friend who forced the issue of dedication and getting your words heard/read.

Through the course of this tortured existence
I’ve given up on every dream
My heart’s been pierced by this doubt
And I’m much too weak to scream

I can’t see through the darkness
Like others seem to do
Sometimes when I’m lost in sadness
I think that I see you

But the angels won’t call my name
In this night I’ll be alone
Searching blindly for my home
The angels won’t call my name
Disappointment comes like rain
I know that I’m to blame

I think, “Will they ever know me”
Will I ever cross their mind??
Will they feel what I am saying?
Memorize my every line

I can’t see the lights above me
Like others think I should
Sometimes, lost in the moment
I really think I could

But the angels won’t call my name
In this night, I’m all alone
I can’t see through the rain
Angels won’t call my name

There’s a knock on the door
And the music fades
And the tape’s stopped running on the songs we made
I can’t see the bright lights
As we pack up all our gear
Everything I just dreamed of
Disappears into my fear

And the crowds won’t call my name
On this stage I’ll be alone
Trying to give up all this pain
But the angels won’t call my name
The music won’t ever play
Sitting quietly at home

Through the course of this tortured existance
I’ve given up on every dream……….

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Monday was reserved for hanging out with Shea until I had to take him home. Disaster followed that as my truck became completely useless and his mom had to come pick him up. If you’ve been following any of this over the last year, you probably still wouldn’t realize how I felt about my ex.

Apparently, I feel a lot. It was the 1st time in, I think 3 weeks, since I had seen her. And I was struck by how much I missed her. We kissed like more than friends but, less than lovers and I subconsciously made a reach for her hand. She slipped any touch, as if she was dreading the feel. And then Shea was ready to go.
and that’s pretty much when it began.

I was overwhelmed by the feeling that I had thrown away something/someone extremely important. And that’s when the flood gates opened and quite frankly they haven’t stopped since. I feel better MS wise but, I’m typing this about 36 hours later and I STILL have a tears rolling down my cheeks.

If you can keep your eyes open for longer then 10 minutes or so at a time and your not being asked if you’re OK every time they are open. I have Multiple Sclerosis, of course I’m OK. It’s only a chronic, incurable, debilitating, auto-immune disease of the Central Nervous System. Everything about knowing that your own body is trying to put a stop to you, is just fucking OK. But, I digress, my day didn’t start off this way.

I woke up 2 hours after I fell asleep and then when I had just started to fall asleep again, my little boy tapped me on the head and said “Daddy??” So that was how my Saturday morning began. Tired as hell, the worse migraine EVER, and 10 50mg Prednisone pills for breakfast. And let’s not even talk about the skyrocketing blood sugar levels of over 450 that come with mass dosing of steroids. But what’s the risk of sugar shock and death when compared to keeping some of your CNS control? And on that end it seems to be working as I have regained strength and control of my left leg exponentially.

Afternoon went well, my friend and the kids came over to spend some time with my little guy, who loved every second of their visit. Unfortunately I couldn’t really keep my eyes open for a lot of it. I’m glad my parents where there to keep them company because, I was a shitty host. 2 hours sleep and the meds did not a great host make. Thankfully, my friends are good friends and stuck around to keep me and the little guy company. They even called my pharmacist and doctors to ask about my elevated blood sugar. Needless to say I stayed home despite the advice and desires of all involved.

I had a good day, despite the set backs, my son had a great day, as always. The Rangers made the playoffs, the Mets won tonight, finally. And my parents stopped trying to get me to go to the hospital. All is well in the world. Now if this fucking headache would just lighten up a little.

Be well, stay well, no regrets.

I spent the better part of yesterday, 3pm to 12am, in an uncomfortable bed in the Emergency Department of UMDNJ. I felt an exacerbation coming on and went to my doctor, who agreed with me, that the symptoms that brought me to his office might very well be a flare up about to happen, or beginning to happen. As, UMDNJ has the leading MS Clinic and Neurology department in the area, not to mention my neurologist is a professor/doctor there, we decided it would be best to be proactive. 9 hours later I was starting to regret the decision.

It became an extremely detrimental day. First off, I love my father but, being the youngest of his children he goes into ANYTHING involving me as if I was still a toddler. Being a toddler might be something alot of people would prefer but, I’m a 34 year old surviving with MS. First example, after going for my MRI or sausage stuffing experiment, as I like to call it. For some reason the foremost neurological hospital and teaching hospital can’t afford more modern MRI equipment. If you ever had the misfortune of having to recieve an MRI at University Hospital, the MRI machine is a small, small, did I mention small, little tunnel. I had to contort my arms into my chest and get stuck a few times on the way into the machine. My hep-valve, IV start point, dug into my right elbow as I was squeezed, and squeezed myself into the chamber. After a half hour session it was time for another half hour session WITH contrast. I was wedged and wiggled my way out of the MRI tube, injected with “dye” and wedged back in. A horrible mechanical grinding let us know it wasn’t happening a second time. The MRI had been broken the first 3 hours of my visit and the technician didn’t want to risk stuffing me back in, only to have the machine break again while I was IN the machine.

After that hellacious adventure; my father decides to interrogate me, at least it felt like an interrogation,about what they were and were not able to see etc., etc. All things that I have no clue about but, at that moment after escaping my claustrophobic experience, I was supposed to know to please my father. Sorry dad. We get back to my little sliver of the Emergency Department and I need to piss. I tell my dad, “please, get a nurse with a urinal or I’m going to pee myself!!” My dad spends the next 5 minutes saying “excuse me” and ignoring the doctors who stop to listen, because HE NEEDS TO FIND A NURSE NOT A DOCTOR. He finally finds a nurse, gets a urinal, and STOPS short of handing me the urinal to explain to the nurse why he asked her. I tore the urinal from his hand and unceremoniously hid behind the curtain and relieved myself. My dad walks in and has the nerve, or audacity, or lack of urgency of the situation to chastise me for being rude and snatching the urinal from his hand. Long story short he leaves the Emergency Room and gets my mom.

6 hours later, a neurologist walks into my curtained box and tells me the they couldn’t find anything active on the MRI but, I would need to get one WITH contrast to actually be able to tell without a doubt if anything was active, especially if there was slight activity. They prescribe me Prednisone, about 5,000mg’s worth over a 6 day course to stop any auto-immune activity that may be present and send me on my way.

When I say that I couldn’t have made it through the experience without my parents and friends texting me the whole time, it’s not just being cute. I would have gone insane without them. The Emergency and Trauma wards of University Hospital reminded me of the hospital in The Misfits “Scream” video, AFTER the zombie band come back

Wow today was a shitty day. Guess I have to pay for all my good days with MS sometime right? The entire left side of my body feel wonky and it’s a bitch trying to get up and walk. And the MS Walk is SUNDAY!eeek I will make it, I will make it, I will make it. I can’t walk to the bathroom today but, I will walk 4 miles on Sunday dammit!
My injection went really well but, it was a belly injection today and those are always easy. Plenty of fat on my belly to poke.

Be Well, Stay Well, No Regrets!!!

FML another insomniac night. Can’t take any sleep medication because my son is sleeping over tonight.

While all my friends and couples around the world marvel at the beauty of their lover’s every kiss. I wonder how many others were kissed the same way. As they revel in the ecstasy of every touch, I’m reminded of how simple it is to replace someone else’s name with mine. It’s not that I don’t believe in love, it’s just that I’ve been on the wrong side of much too many times to think that my imagined version of “love” is the only, truest, and best version.

Love is a word that can mean many things to many people. I was once told by a childhood love affair of mine that, “I just don’t know, it’s like the magic is gone.” I answered that there was no such thing as magic and we didn’t live in a fucking fairy tale. How could I have known that I’d gotten the gist of it at the ripe old age of 16.

Don’t get me wrong. I was once a huge romantic. I listened, in the dark, to prophets of doom on the radio but, I always imagined someone who would see through to everything in my soul. A John Hughes happy ending. The movies we grew up with that made us think everything was good and fair in the world. And like Jay and Silent Bob after being led down the road to Shermer, Illinois. We found out, THERE WAS NO FUCKING SHERMER, ILLINOIS. It was all part of someone’s wishful thinking. John Hughes obviously spent his high school Years fantasizing about those same scenarios he wrote about.

But, the world is not Somekind Of Wonderful, with a happy ending for the kid from the wrong side of town, the punk, tomboy romantic, the poor lost rich girl, and a fitting end for the bad guys. It’s far from as perfect as we think that would be.

I learned this when I was 18 taking my best-friend’s girl to an abortion clinic. It didn’t happen, thank god, but after the baptism it felt like it for me, with as much as I saw that little boy. But, this is the way of the imperfect world we live in. 17-18 years later, we live on and hope things turned out right. I hope MY little boy understands why his parents split up, and he grows up loving both of us, and grows up well. But, that’s all we’re left with is hope.

And for a cynic…..that’s nothing at all.

But, I mean I really lost a day. I remember sitting down and typing yesterdays blog. Somehow I guess it never got posted and disappeared back into the depths of my laptop. THAT’S never happened before.

Wow..Today is THE MOST DON’T EVEN WANT TO GET OUT OF BED ALL DAY LAZY DAY of the current year. The only reason I accomplished anything today was because I had an appointment with my pain management doctor. Who I must say is one of the best overall doctors I’ve had in a while. The guy doesn’t want to keep me doped up and numb and he works WITH me to figure out what meds would do me better.

I’m on Baclofen treatment right now which should help with my spacicity and help me walk without a cane. YAY!!! It’s been doing minor good so fay and we just upped the dosage. Wish us luck. I don’t have a neurologists visit til May and I’m currently in the market for a new neuro. I know the University of Medicine in Jersey has one of the best Multiple Sclerosis departments in the country but, I can’t deal with semi-annual visits. I want to be able to schedule appointments when weird shit happens.

Copaxone is going well but, I’ll have to wait for the next MRI to see how effective it’s been.. Until then I wait and see.

BE WELL!

Day 271 I hate my LIFE!!! And not because of my injections. I had made plans to go out for my friend’s birthday after going to see a band play with my other friend and woke up at 10:30am and again at 6pm knowing it wasn’t going to happen.

I feel like a 70 year old grandmother. My hips are killing me and the hurt to walk. I don’t know why, because I don’t do any strenuous activities. I feel like an action figure that had its’ legs ripped off and stuck back on wrong. It feels like I should have bruises on my hips but, they are free and clear. Just another night home alone thanks to MS. Yipee.

Day 270-WOW has it been that long?

Today’s shot was an adventure. Not because of anything major just because of my own stupidity. I loaded my Autoject, which I finally requested after it became too difficult to self inject my hips. Well I forgot to take the cap off the injection, so when I hit the trigger and didn’t feel anything I looked at the autojector and took the cap off. So, after watching my daily injection stream across the room like a kid’s squirt gun, I put all my equipment away til later. AND DIED LAUGHING! And tried again 6 hours later.

Today was a good day. Spent 6 hours or so with my best friend’s son and wife. It was a great day, just bullshitting and watching our kids play. They had been 1 year olds last time they saw each other. Shea was super friendly as usual. They socialized pretty well.

Oh yeah, today marked 7 days without meat for me. I decided to give vegetarianism a 2nd shot. It’s been 5 years since I started eating meat again and I’m pretty tired of it. I like the way I looked and felt a lot more when I was a vegetarian. I’m giving some serious thought to becoming a vegan again. I like the lifestyle and dedication of it.

Thanks for sitting through this and BE WELL.

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