26 March 2009

Holy crap Batman that hurt

The last two weeks have been much of the same. I can't seem to find the time to work out as much as I would like or need to. I make it in on the weekends. Monday's are out because of all those people that fail to work out over the weekend try and make up for it on Monday. Since I work in a germ factory of an office, Tuesday's are my allergy days. By the afternoon's my head is pounding, nose stuffed up, eye's watery and itchy. By the time Wednesday comes around the motivation to work out during the week evaporated. My parents were in town half of last week and half of this week.

Amazingly, there was a seamless transition on my injection meds. The people from Shared Solutions called me five days after my appointment, said they would send an informational packet and told me to call in a few days if I hadn't heard anything on a delivery. In the meantime, even though I said I didn't need a nurse to come out for the show and tell session, they were sending one anyway. I called back a few days later and they said they faxed off the prescription to my specialty pharmacy and I should call them that day. Called the pharmacy and it was ready to go and would be delivered on a Tuesday, my Rebif ran out on Wednesday and the nurse came today.

You have to hand it to the drug companies. They have more promo items to give away. I got a mesh back, a water bottle, hand sanitizer, hand cream, sun glass case, chap stick with holder, sun screen, magnetic picture frame, combination ice/hot pack and of course the obligatory pens. In this case three. Of course they all have Copaxone on them.

The nurse spent about twenty minutes here. In the end she said she felt pretty useless. Most of the people she's sees are newly diagnosed so they need the whole song and dance. After the question and answer session came the moment of truth. Since I have to shoot up every day, I can't really pick and choose where I stick myself, I started with the back of the arm. While the steroids have put 20 points on me since I took the first dose 18 months ago, like most men, it's mostly on my waist. The rest of me is rock hard muscle.

I used the auto-injector simply because it's easier. Not a lot of fat to pinch so . . . deep breath let it out, since she told me it burns just like Rebif, pull the trigger and . . . hey . . . that didn't burn. A minute or so later, it felt like somebody gave me a good pinch, a couple minutes after that it felt like somebody punched me with a knuckle sticking out. Four hours later, it's almost stopped hurting.


Tomorrow . . . we'll try my hip or stomach.

12 March 2009

Updated News

Good job ManU in the 2-0 win over Inter and Ronaldo scored a goal in a big game. Shut up critics.

I had my "check up" with the neurologist today. She was pleasantly surprised that the steroids helped as much as they did. I still have some spacicity in my legs but nothing compared to two to months ago. Back then just image pulling a rubber band as tight as possible and trying to do something with it.

I've been searching for the proper phrase and I think it's irony. Her concern is that my exacerbation's are on my spinal cord rather than other places in my CNS. Is there any good spot to have an exacerbation? Anyway there were two small spots on my T6 that would explain the symptoms for this last go around. Given that fact that's where the myelitis is/was: no kidding those are consistent symptoms.

We are changing meds though: Copaxone. Thankfully, I won't have to go through the months of flu like symptoms and will have to worry site reactions and shooting up every day. We did talk about some of the new meds on the horizon. As usual with anything in the states it takes forever for the FDA to give approval so right now looks like 18 months minimum before it gets to market.

There's a couple oral drugs but nothing particular on if its in conjunction with another drug or taken singly. There's a drug that will help with walking that can be taken in conjunction with other meds. Another infusion that's taken once a year that is supposed to reduce exacerbation's by 80%. Nothing definitive on that yet.

I go back in 4 months unless something changes.

09 March 2009


Last week was National Awareness Week. Refer to last years post for my thoughts.

I'm working out a little bit more and more. It's still taxing on my energy though. I can fight through most of it. Sometimes. I had to work at my dad's on Saturday and it sucked me dry. Had to take a nap. I was okay the next day. Maybe my endurance is growing.

I have my follow up appointment this coming Thursday. Refer to another entry for my thoughts on these delightful visits.

But such is the life that we lead.

On to a lighter note : Go ManU beat Inter.