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Tag Archives: chronic illness

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. 🙂

Life as a dad with MS isn’t easy, life as a dad with MS can be hard but, I WILL carry my boy into the end zone.

Every hour of every day, someone else is diagnosed with MS. MS defined my 31st birthday. No parties,  my present was a diagnosis of multiple sclerosis after a week in the hospital. It may have hit me harder than normal. Within 6 months my mood swings and heat sensitivity had cost me my career. In the next 2 years I’d lose equilibrium, endurance, and see my feelings of worthlessness, and my flawed attempts to make myself feel worth something, take more of my health and my family away from me. I don’t ever want another human being to suffer all I have or worst. I don’t ever want my son to give up, like I first did.That’s why I registered for Walk MS 2012 and that’s why I’m asking you to support my fund raising efforts with a tax-deductible donation.

The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS but they can’t do it without our help. It’s faster and easier than ever to support this cause that’s so important to me. Simply click on the link at the bottom of this message. If you prefer, you can send your contribution to the address listed below.

Any amount, great or small, helps to make a difference in the lives of people with MS. I appreciate your support and look forward to letting you know how I do.

P.S. If you would like more information about the National Multiple Sclerosis Society, how proceeds from Walk MS are used, or the other ways you can get involved in the fight against MS, please visit nationalmssociety.org.

Click here to visit my personal page.
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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.

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.


That should be the Republican campaign slogan. All we hear about is Paul Ryan’s plan. It’s very easy for an upper class or upper middle class white middle aged person to say let’s cut Medicare and Medicaid. Have him walk in our shoes or roll on our wheels for a day. Hell he wouldn’t last an hour.

Quietly during Obama’s 1st years he basically signed into fast track certain chronic illnesses for Social Security Disability. The Democrat’s Health Care Bill eliminated denying healthcare for pre-existing conditions and dropping coverage because of a developed medical condition. But, the health care law sucks.

10 Multi-billion dollar corporations made massive profits last year and paid little to no tax because of the current tax code. The tax rate DECREASES rather than increases the higher up on the income level you go. What? How does this make? So they’ll take away my small disability check and my parents’ or grandparents’ so they can hand it over to the Upper Class of America?

OPEN YOUR EYES AND SEE THE CLASS WAR! Because the bottom line of all this; is killing the middle-class.

But, this isn’t a political blog. Just one poor guy, fighting a daily struggle against Multiple Sclerosis.

Day 295: Belly
The belly injections always go so easy. Probably because of the pillow I carry on there.
If you’ve read this blog before you’ll remember that the hip injections SUUUUUUCK! Yesterday was no better and today, I wake up with a pretty big bruise right over my right hip injection site. A bit painful and slightly itchy. I can live with it though.

I was feeling pretty good actually. Even went to Target to get some things for my little boy’s Easter basket. Spent 3 hours at Target looking at and picking things out. It was actually a really good day today. Let’s hope they stay that way.

Live well. Be well. No regrets.

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

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.”

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.

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