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.

Sending The Kids

School is back in session – for most kids I’d imagine. Mine included – at least 2/3rds of them.

After the summer break I thought it’d be a welcome…well…break, but it has been anything but since they’ve gone back.

I will say this, although the early mornings are a clear reminder of on of the reasons why i loathed school soooo very much, at least I get a few hours to accomplish some things I’ve been trying to accomplish since summer break started.

Hopefully as I get more accustomed to the schedule it will indeed be a break that will allow me to get more things around the house accomplished. During the mornings at least. And now that I’m looking at more AM free time, I might try to take a bike ride. Coming from a person who can’t find the time to squeeze in some crunches, It may be more difficult than I had anticipated. let’s hope not.

And oh yeah, I’m starting the feel the need for my tysabri fix ever so slightly. I suppose after almost ten years of this stuff, it is more obvious the need for my medication. Or the signs of it wearing off are much more established so I notice the need for a refil. if i’m putting it right. That’s why I consider it my Tysabri fix. I need it much like, I suppose, a drug addict needs their fix. I’m addicted to my Tysabri treatment…could be worse.

Waiting on Doctor

As I sit here in the doctor’s waiting room, I keep perciverating on something that happened yesterday. But first let me say the physical is a yearly doctors OK that I can indeed continue to receive my Tysabri dosing. Because lawyers…

Anyway, back to what happened yestetday…I went to my parents so that along with my kids spending time with their paternal grandparents I could get a bike ride in at PCT.

The trail was sweet. I was going pretty fast. When I hit the path I wanted to continue that trend. And I vertaonly did. Bested a couple weekender jersey wearing roadies (not that its a competition). I was riding so fast I broke my 10MPH average for trail/path cpmbined. It felt good, except for the puking mid path. That really sucked. It was a vomit comet, as I never stopped riding. Only the hardcore!

EBV, D3, Smoking and Sex

I have have at least 3/4 of those…and MS. Damn it. I probably have Epstien-Barr too, but I can not verify that at this time.

If only I had known in my 20’s that I shouldn’t smoke…oh wait, I did. Stupid me for not listening to myself, society, and science. So stupid on my part. I did give it up though.

Perhaps if I didn’t spend so much time in my basement playing video games I’d have gotten enough D3 (sunlight) to ward off the multiple sclerosis.

And being a dude should’ve helped,. but it didn’t. Just like me to buck the trend. Something I’ve been doing my entire life.

 

And there in lies the problem with MS. One of the many actually. You’ll spend so much time thinking how/why did I get this, what did I do to deserve this? Well, in my case at least, it won’t help to contemplate those things. I have MS. There is no going back to a time when I didn’t have MS (or at least know it). It is impossible as time travel, so I do not think pondering how or why it has happend will be of any benefit. Especially since there is no definitive answer at this time.

Of which I can be sure is that I do have a diagnosed case of Multiple Sclerosis. There is only one thing to do now.

Look forward.

That means a few simple things:

1.) Taking care of myeself

2.) Take my MS medication as prescribed.

3.) Exercise and stretch.

4.) Try to maintain a + attitude.

Don’t bother looking back, it only leads you to a what-if scenario that won’t be at all beneficial to the current scenario.

Wednesday

Wednesday is so close

I need my dose so badly

The  fatigue is here

This haiku is brought to you by a Multiple Sclerosis sufferer in need of his Tysabri administration. Me.

7 day warning

It is Wednesday, one more week until my infusion. The sweet relief that is Tysabri only awaits seven more days. I anxiously await its administration, and moreover, the relief that follows.

That does mean, on the other hand, there is at least one more week of pretty harsh knee pain* and general muscle tightness on the whole left side of my body. It started in my calf and worked its way all the way up my left side over the last decade. I really notice it in my neck during the weeks proceeding my infusion.

But lets not worry about now or even the time leading up to it. Or even the needle stick. Nor the PML risk. Think about the post infusion bliss that follows the dose of Tysabri. It’s worth it! A near normal life with MS.

 

*My knee feels like it really has to crack, but when I crack my knee it only relieves the pain/ache somewhat.

May?

I really, really enjoy eating very good food. If it’s not fast food, I’m trying to eat something quality and healthy. Then I read this title:

Intermittent fasting may benefit people with MS

(Emphasis mine)

Ok, it MAY help? Then I MAY try it.

Which means I won’t. I’ll need definitive proof that fasting helps with MS. Then I might try to stop eating so much. I do love good food, and even sometimes I’ll treat myself to s****y food. Sometimes I don’t eat much but often I eat too much. I love good food. I am not going to stop eating without proof that it helps.

 

 

Summer

Yes, complaining about the heat & humidity again. Specifically, how in my neck of the woods it seems to be insanely hot and humid though the weekend plus Monday for the last month.

It makes going outside tough. Everything I do seems harder. Yet, I preserver – or at least try. I’m going to try and get a bike ride in today. It won’t be too long, no Wisconsin or anything, probably just up to mchenry train station or down to the fox, depending on the wind.

I can’t use the weather as an excuse all the time!