Skip navigation

Tag Archives: corticosteroids

Interesting news from across the Atlantic.

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

Advertisements

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

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.

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.

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.

%d bloggers like this: