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Interesting news from across the Atlantic.

Research Proving Link Between Virus And MS Could Point The Way To Treatment And Prevention.

Seems I blew by injection 500, 86 nights ago! Should be 587 but, I’m trying to stretch the last few injections of Copaxone seeing as how they are the last for a while. I’ve got my application out to AssistRX and hopefully I qualify. I don’t know what options i have other than that. I don’t make enough on my disability check to cover my rent, phone, electric, food for myself and a three year-old, a monthly “High-Risk” insurance policy, and the inevitable co-pay. Our esteemed governor has decided that if you make more than $900 monthly on disability, you no longer require medicaid. Does he not know that the median rent in New Jersey is around $1000 a month, unless you live in a subsidized project, which has a 2 year plus waiting list.

I guess he’s too busy embarrassing our state with his Tony Soprano antics, campaigning for Mitt Romney. Funny, Gov.Christie comes out against “The Jersey Shore”, and then acts like a member of the cast every chance he gets. Enough…

Day 597-Back of right arm
Had to ask mom for help tonight with my injection, as I tried my best to keep the shots 2 inches from the previous weeks. I’ve been having issues with body temperature lately. Last night and tonight where 37* outdoors, my thermostat set to 65* with drafty windows and a huge draft from the A/C still in my bedroom window, and I had to place a cold towel on my head and my T-shirt collar was/is moist from sweating. I don’t know wat else to do…open a window? Oh the joys of MS.

Be well!

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.

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.

Day 281 – Belly shot.
Injection went easy, as usual for the belly injections. No swelling, redness, or itchiness. At least not yet.

Fell asleep at around 7am til 130pm. Felt exhausted all day after I woke up. Now I’m in bed trying to go to sleep and I just can’t. Oh the joys of Multiple Sclerosis. Well at least I don’t have to worry about waking up early to drive down and pick up my son, his mom was kind enough to volunteer to bring him up herself. I still want to go to sleep in order to be awake for him. Wish me luck.

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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