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Tag Archives: hope

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!

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It’s been quite a long time since I’d posted a new blog. Breaking all my promise of keeping everyone involved. Two weeks ago I started walking without my cane and not feeling as weak as I had. It was really an overnight change. Seems, that I finally went into remission after a year long relapse.

Still taking Copaxone, haven’t had the eye exam required before I start on Gelinya. Fuck i procrastinate.

My son, Shea, turned THREE on May 22nd. We threw him a Thomas Party. I even BAKED the Thomas cake! God, it felt good to be able to do something I hadn’t done in over a year. Doing it for my son felt even better. i even picked him up for the first time in over a year, without fear of falling. THAT, felt even better. You start to appreciate the little things in life when you have Multiple Sclerosis.

The sad reality is I can’t even think of MS right now, and this is supposed to be an Ms blog. I’ve been sitting home, reminiscing, crying about my son’s mother. She even texted me once, “what does Best Western” mean to you?”. When I texted her back what it meant to me, her reply was that she couldn’t remember anything good, just the bad that had happened.

I’ll fill you in, we had decided to go to Warped Tour ’06, at that point we weren’t engaged yet. A girl I had a sexual encounter with and worked with, texted something that upset her. We ended up fighting at Warped Tour in Pittsburgh. But there was a ton of special memories that happened that day. And for me, before the argument and on the way home, it was when I decided I wanted to marry her. This happened again on our flight back from Florida in ’07. A woman I hadn’t seen since ’05 texted me on the flight home.She didn’t believe me, I know, but, she didn’t leave me. She was/is an incredibly strong woman.

I was a complete jerk after my ex, Rachel, had broken up with me.I had left my ex-wife for her and after ten months it was over. She left me via IM on my first day of work at a new job. So after her I became a womanizing jerk.My exploits during that time were legend, and my son’s mother, having been a friend since before the break up, knew EVERYTHING.

I don’t know exactly what happened to convince her to pack up our son and leave me. It was right after a hospital stay for an exacerbation, and my unemployment had run out. I had so much on my mind at the time, I didn’t realize anything was wrong. I was trying to keep us in our apartment. She had been saying before the break up, that we should go back home and not spend the last of my savings. she had threatened me with leaving if i didn’t go to the hospital during my exacerbation. Then she left me on the day I got home. I guess she really had time to think about how horrible I was while she was at her parents on those weekends she had started to go away.

She says she hates my personality, that I’m too quick to make friends and that I flirt with everyone without realizing. She says she loves me but, can’t let herself go back to that place she was in before. I say, I realize what an asshole I was, I know the horrible things I did and let happen, I also know how important she was to me, and how I’m willing to crawl on my hands and knees for the chance to show her.

I’ve been listening to the most depressing songs I could find today. But, i realize the song she asked me to download for her and make a CD of, “Jar Of Hearts”, is about us. She may not realize it, I always read into song lyrics way too much but, it is us.


Yeah…I’m a Star Wars geek.

Day 294: Right hip.
Injections to the hip always suck for me, even after 82 injections to the hips.
There was no site reaction, no itchiness, just the the “OH WOW THAT SUCKS!” sting of the injection.

Went to see my pain management doctor today; got scheduled for a few injections to my spine. Yipee *can you feel the sarcasm?* But, a little pain to get rid of the knife wedged between my vertebrae is well worth it.

Visited my new neurologist today too. Was very surprised that he spent 45 minutes discussing my disease, the diagnosis, the events surrounding the diagnosis. The doc was like an MS detective. I was really happy to see he was very knowledgeable about MS, research, new drugs etc…even though I’m his only MS patient.

After completing my physical examination; reflex, sensation, etc. He came to the conclusion that my back and leg problems were not caused by MS but, rather my obesity. I explained to him that I had gotten my weight under control on several occasions, once losing almost 100lbs. through a vegetarian diet and exercise but, my inability to exercise now was hampering any serious weight loss. He advised me to give it an honest try at losing some weight on my own again.If my mobility issues became a problem he would recommended Lap Band surgery and said he would aggressively seek it through my primary care Dr.

The thinking being the weird nerve sensations I feel, aren’t caused by my MS but, rather by my extremely high blood sugar. My leg weakness and knee problems, fatigue, etc. all problems reduced by losing weight.

Well, I’m not totally for it but, at least it’s not vanity causing me to do it. And the band can always be adjusted once my weight is under control. 😦

The Neurologist also ordered some blood work, wanting to be sure of various things before putting me on Gelinya, the oral MS disease modifying therapy. So no more needles after the blood work, no more self injections. This, the doctor said, was the one thing he could do on my initial visit. Since, I had been reffered to him following an MS event, he had no fear of disrupting a treatment that was working well for me.

He asked about my progression, commenting “Yeah, that’s what it does, picks you apart.” When I bumped into him trying to climb the examination table and said “I’m sorry”, he grabbed me by the shoulders, helped me position myself on the table, and replied “You, have NOTHING to be sorry about.You’re sick.” Echoing what my big brother says every time he hears me apologizing for everything.

On a side note: When I switch from disease modifying therapies….what will I call my blog???

Dr. Lamazov also said he’d brush up on Ampyra, the MS walking drug, for me because he didn’t know enough about it to comfortably write dosing amounts, etc. Wow, a doctor who, not only obviously had been paying attention at the beginning of the visit but, was also open to learn a little more about what I wanted. What an AWESOME neurologists’ visit.

TODAY WAS A GOOD DAY!

BE WELL, LIVE WELL, NO REGRETS

After the premier tonight of Game Of Thrones you’ll understand the title of this post. Game Of Thrones, a book I read 8 years ago and thought no one would ever make anything mainstream from it but, I wished they would. HERE WE ARE tonight on HBO “A GAME OF THRONES” comes to life, albeit with the “A” of it’s book title.

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.

Well that’s all for Sunday afternoon, my son is napping, I’m waiting for his mom to arrive and the Rangers are home for Game 3 against the Cap. LET’S GO RANGERS!!!

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

Day 284 – Back of the left arm

Today was a good day. Well a good day other than the forced realization that I had been such an asshole during the last 7 years, that I had quite a few people, including myself, very disappointed in me. And letting me know about it. Let me tell you, once life has dealt you a disappointing hand…you really don’t want to be part of dealing disappointments to others. Especially if you cared about them at all. Or you can be a vile bastard and think; “Fuck everyone else. God is fucking me so, fuck them!” And those are the same people you see in their last days, sitting in a nursing home, dying alone, where even the people taking care of them don’t care if they die because they’ve held on to the bastard they let themselves become the day they got the raw deal.

I opt for the latter. I hope that people can see that and I hope they can see the sincerity in my regret.

OK enough of that. Thank you Debbie for donating to the MS WALK. YAY!!! The donation goal is quickly being reached as we get to the final day. Of course, I can deliver my donations at any point to the North Jersey Chapter of the National Multiple Sclerosis Society, in Paramus NJ. It just won’t go towards my 2011 Walk MS goal. But it all goes to help MS survivors and funding research. I’m happy either way. And I feel like I’m paying off some karmic debt since that’s the only debt I have enough money to pay off.

Stay Well, Be well, Live Life With No Regrets!!!

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.

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