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70 injections away from 2 years plus on Copaxone. My neurologist wants to put me on Ampyra and Gilenya but, apparently my docs aren’t communicating. Test that my neuro ordered, my dr. did. yet still haven’t sent the results back to the neuro. Wish they’d make up already. The last thing I need is MS AND my medical support team having a tiff.

All jokes aside, this disease gets me down sometimes. Not just by making parts of my leg numb and the worst times. I went three days last week ignoring all my medication just thinking to myself; “none of it is going to make me better. So why bother?” After just three days I was stiff and aching, everything hurt and I’d gotten out of my funk. No one knows this because I tell everyone I’m fine and I don’t look like I’m falling apart. It just hasn’t changed me on the outside and I don’t think the people around are equipped to handle any other answer than “I’m fine”

Going on 5 years plus and I’m fine. 🙂

Funny how I sometimes have a hard time remembering yesterday. But, I can remember the day and way I met someone, well, what seems like an eternity ago. I remember meeting my son’s mother (insert HOW I MET YOUR MOTHER omg here). I remember how we drove around in her car, with me trying to hold her hand and kiss her at every red light. I remember when she got a call from her little sister and she asked me if I cared if we went to pick her up at her boyfriend’s? I remember waiting in the car with my AFI hood over my head as she described how her sister’s boyfriend had hit her sister. And keeping that hood on the entire time while we drove her home and she went in to her parents’ house.

I remember all of this, painfully, wishing I had known then what I know now. So I could have approached the start of things differently, and maybe the whole thing would have been different.

But the past, as they say, is a memory. We aren’t together anymore. Haven’t been since this blog was started. She couldn’t forgive my past sins and when she felt that resentment…she couldn’t resist the push apart. And I don’t blame her. I ache over it. I resent the moment of it as I was returning home from an MS-forced hospital stay. But, I truly don’t blame her for any of it. Not all sins can be forgiven or reconciled.

“When routine bites hard. And ambitions are low. And resentment rides hard. But, emotions won’t grow. And we’re changing our ways. Taking different roads. Love, love will tear us apart again.”

Day 289- Left Hip
Today was a bitter sweet day. I had to cancel taking part in today’s, this year’s Walk MS. It hurt to have to miss this event to raise awareness, I’d been “training” for the walk by using my own two legs and cane to get around everywhere for the last 5 months. I said NAY to the scooter at the supermarkets and WalMart, it got tough at times but, I muscled through thinking of the Walk MS event. So, not being able to participate today was a let down.

On to the sweet side. Today was my niece’s daughter’s 1st birthday. Fun time was had by all. They had a Build-A-Bear station set up. Actual Build-A-Bear, not a knock off. They had magicians, they had cotton candy spinners, a Strawberry Shortcake character running around, it was a wild first birthday. Seeing all the fun my little guy had at the party was awesome. So it was definitely a sweet ending.

Be well, stay well, no regrets.

Today started out INSANE, Had to drop off the hospital prescription at the pharmacy, called the hospital, my neurologist, my insurance, my 8th grade teacher, and the priest who baptized me, trying to get approval. It seems 1,000mg of prednisone over 2 days and 500mg the next 4 is an excessive amount…normally. Long story short at the end of the day I shelled out $40 bucks from my pocket for the ability to walk. Seems like a fair deal, no?

Other than the clean up from yesterdays hospital extravaganza, the injection went well. I picked up Shea today and really at the end of the day when you get that big hug and kiss from your child before he lays down to sleep and you get to see their peaceful little faces…THAT’S REALLY ALL THAT MATTERS.

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

After a few months of trying and only getting my older brother to donate to WALK MS. My friend George made a donation today, well yesterday. It was extremely nice of him and appreciated. George is one of the few people I still talk to from work. Actually one of the only other managers I still talk to from work, not for lack of trying. I guess me and the other “friends” only had work in common. My friendship went from bring invaluable to being “UN-valuable” once I left their ranks.

Oh well, it’s their loss, I’m a good friend to have around. I understand no one wants to be around the sick or dying. It just really sucks when YOU are one of the sick. I hope I wasn’t that way towards others when I was well.

STAY WELL.

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.

I’ve been wondering lately. My Multiple Sclerosis symptoms took a turn for the worse last year and generally keep me from safely doing things like walking without a cane and getting up after sitting for long periods of time like sitting at a bar. I can’t even risk having one drink.

I’ve started to feel more and more alone after my symptoms got worse. Seems that friends have become scarce. Don’t know if they fear me hurting myself while I’m out with them or the old football jinx that you never visit an injured teammate because you don’t want to think of yourself that way.

Feel like I’ve been put in the closet; out of sight out of mind. At least that’s the way I feel. I’ve been left on my own but, I communicate with you. So I’ve been doing pretty well combating isolation.

If you’ve been feeling isolated and alone, due to a chronic illness, please feel free to communicate here and check out this article on ButYouDontLookSick.com. while you’re at it look around the site for forums and other things to help you keep touch with others. It’s very important.

BE WELL!

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