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Tag Archives: dissappointment

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!

How do you prove you are willing to do everything you can for someone, and that you’ve changed when the outside forces you can’t control make you seem like you haven’t.

My son’s mother had suddenly changed her tone on texts and we were having dinner and watching a movie. All very friendly. Friendlier than we had been in a long time. Suddenly a noise. she runs to see what it is and comes back with my cell phone, tosses it in my lap and says “you better answer her she seems mad.” Goodbye followed shortly after. My awkward attempt at a goodbye was “sooo, um have you met anyone?” “No I haven’t met anyone, not really” was her reply as she hugged and kissed our son farewell. WHAT AN IDIOT I AM!!!

I can see the thought formulating in her mind. ‘He’s only after me because he’s afraid I’ve met someone and he wants me to answer him because he doesn’t want to move forward without a final chance’. I can see this because four months ago I DID DO that and she egged it on “go be with someone else” But, when it happened she became so mad, our peaceful separation and midnight rendezvous became few and far between and more angry. I had betrayed her…I guess I was supposed to have stayed happy with just sex.

Today, I thought we had taken a step towards being friends. Spending time together was good until an unwarranted, unwanted text message ruined the moment. Though looking back on it, it wasn’t particularly a perfect moment. I guess nothing ever really was.

I missed my Copaxone injection today. All I wanted to do was sleep once our night together ended and it seemed like my son was on his way as well. So we slept. He’s still peacefully asleep while his daddy stays up, since two a.m., morning the emotional lose of his mother.

Let’s touch on some basics:

BE WELL: When you are healthy, even when you are fighting a chronic illness embrace it. Grab those moments with both hands.

LIVE WELL: Live up to your abilities and beyond if you can. You never know when they’ll no longer be there.

NO REGRETS: Regret will kill you as sure as disease. If you have a doubt about the morality of what you are doing. If you’d be ashamed if your child DID what you are doing or about to do. Don’t.

BE WELL! LIVE WELL!! NO REGRETS!!

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.

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