Finally Infused

I received my Tysabri dose yesterday. On a Thursday. Thank goodness, as I was really jonesing for my dose. My body felt like it was starting to give in to the MS. Tysabri keeps that from happening. I need my stuff! And not a day late.

And I hate needles

I need to say, though, having my Infusions on a Wednesday at the AIC seems to have made a big difference. In the overall happiness of the AIC staff anyway.  Unless they all just got chewed out by upper management, or something, I don’t know. Everybody from reception to one of the best AIC nurses just seemed to be off, or wanting to give me flak, or something. It wasn’t that the experience was terrible. I was able to make it through it all with little trouble. But it seemed like the whole AIC was aimed at making sure my experience wasn’t as good as it could have been. Maybe they’re sick of seeing me after almost ten years? Everybody in this world seems to have a point at which they’ve had enough of me. Maybe they were having an off day. Perhaps I was. It was weird.  What felt like a home to me did not feel that way yesterday.

To make it worse, some (likely cancer) patient took my Wednesday appointment again. GDMFSOB!

Anyway, back to the  good drug. It was administered. I’m already starting to feel better, but this one could take a few days. I was feeling pretty worn out post-infusion yesterday (hence not posting about it until today). Wasn’t the worst lethargy I’ve experienced (that was the first few infusions), but it was up there. Hopefully that means It’ll work even better? Not likely, but wishful thinking.

[email protected]

 

And a few people obviously know my Infusion schedule, after just a couple of views everyday for however long, the visitor count jumped to over 30 yesterday. It’s the AIC patient’s fault for taking my preferred appointment time!

the view from my infusion room, Schaumburg in the distance

 

And something you never want to see from your infusion pump.

Good thing the pumps realize that instead of pumping your veins full of air! Sorry for the vertical video, but it was an instant and the pump fit better in that perspective. Plus, if I landscaped it, it would’ve shown all my personal info. AND YOU DO NOT WANT THAT ON THESE HERE INTERWEBS!

SIDE NOTE: My research indicates that it’ll take >50ML of air in a line going into your vein to cause a problem. They did note that  20ML of air rapidly infused into an IV line can cause emboli (that’s the term they used). Information I gleaned from someone’s opinion on allnurses.com.

 

Guh

I should be post infusion right now. Instead I have another 24 hours of suffering (actually around 14 hours at this point in the evening).

Damn cancer patients. The plight of getting infused at an Ambulatory Infusion Center.

Oh I Need My Ty

Bad. Actually. Badly. I need my Tysabri badly.

It was really warm midday. Nothing excessive, but up there. Especially in the baking sun. Which I was in while I was playing with Kei before the kids started getting home from school. We were playing hard – or at least it seemed to me. I was hot. I couldn’t cool off. Then it started happening….

I don’t know wheat to call it, but my vision was disturbed. It was hard to look at my phones keyboard. The specific key on which I was focusing was hardest to see.  It was weird. Really weird. It was, and this is the best way I could put it, like I had a tear in my vision. Or a jagged line of light, mostly concentrated in my left eye. Makes me think my right brain is the most afflicted.

I’m not sure what happened, but I’m betting it was the Multiple Sclerosis exacerbated by the heat. After a thorough freak-out in my head – a lot of what ifs, I sat down in the shade. Aside from getting eaten up by mosquitos – chilling in the shade wasn’t getting rid of the visual disturbance. So I went and filled my water bottle and soaked my cooling towel. Chilled out and tried to relax while I hopefully cooled off.

I eventually did, and the vision problem subsided. As always, it is the fear of possibly having an attack that scares me most. A lot of what ifs where going through my head during that time.

Now so very clearly I need my dose of Tysabri. Stat like!

I have to wait until Thursday for my dose. Wednesdays were taken. Two months out. Damn cancer patients : P

The revenge of the 80’s

It seems as though my extravagant youth has caught up to me. I had a huge  – likely unnecessarily large – filling in what I believe to be my #14 molar. It was a gargantuan filling. You’ll be impressed if I ever can find it and take a picture.

Let me get to last week. My kids were binging on starburst, which due to my younger two have to be unwrapped and given to them. Whilst unwrapping and distributing starbust, I unwrapped a cherry one. Thought to myself, I’m kind of hungry, I could use a little snack. Popped in my mouth. Started chewing.

One of the worst decisions I have ever made.

I realized that when I was chewing and felt a significantly sized piece of metal in my mouth along with the starburst.

When I first got it out, I thought my tooth had simply decayed and disintegrated and that was like a portion of the broken tooth. Looked really nasty. But I’m happy to say I did not panic. Didn’t really bother me much.

I did, however, realize that this was probably serious. So I took it upon myself to ring the dentist and make an emergency appointment. Unfortunately it took almost a week due to my procrastinating* and my dentist, who is wonderful, not having convenient office hours for my particular situation. Like I said I wasn’t in pain…physical at least. Sweating it was kind of hard. As it most usually is the worst part.

Anyway I got into the dentists on a Monday, and I could tell by her reaction as soon as she walked into the room.it wasn’t good. It wasn’t. At all. It was terrible. Pretty much my worst dental nightmare.

A visit to the endodontic studio.

Don’t understand? Lucky you. Let me put it this way:

Root Canal

I get home after stopping at the pharmacy to pick up the antibiotics my lovely dentist was nice enough to prescribe. And I break the news to my loving wife. I am filled with worry about the procedure I now have to face.. Most of the people I’ve heard talking about root canals are usually horror stories. My wife tells me they’re no big deal. My mom tells me they are horrible. My dad says no big deal. The internet, as expected, is nothing but horror stories. The anxiety is what destroys you!

So Wednesday arrives. I get to the studio early. Wait for about an hour to see Dr. Trinh. I was so nervous it was indescribable the amount of anxiety I felt. I sit down in the chair. Dr. Trinh goes over my options. One of which is to root canal the two molars surrounding the damage molar. He stated that the teeth have irreversible plaquitis. I declined, slyly stating that we should just go with what has already been planned.

He then injects me. The first round wasn’t too bad…like shots from a dentist. But the second round – I still fell those to this day. My jaw is still sore. Whatever he used really worked though. As I did not feel a thing during the entire procedure.  There was A LOT of drilling I could hear – which occurred to me today I did not smell that burning smell that is common during fillings at the dentist. But the pain was absent.

A bit under two hours after Dr. Trinh started, he was done with my root canal.  What a relief. It certainly wasn’t fun, but it also wasn’t the terrible experience I was expecting. I suppose going in with the lowest possible expectations really doesn’t set a high bar for a root canal. So high marks to the crew at Renovo and Dr. Trinh.

And then after I got home the numbing agent wore off and the pain set in. It was pretty harsh for a few hours. And all Dr. Trinh suggest was ibuprofen – NO – or tylenol. Wasn’t good enough for the few hours after I got home.

And hopefully when I follow up with Dr. Jaffrey she’ll have better news about those two molars that Dr. Trinh said would have to be canaled. C’mon conservative dentistry! I should expect for the worst, which I do, but I hope for the best at the same time.

*Avoiding what I ultimately knew would be a bad outcome.