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.

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.

 

 

Sorry Everybody

But the blog spammers have found my new blog and are creating new accounts on my site. I’ve had to disable the ability to register new accounts and delete all the users (except myself, of course).

For linkspam the unscroupulous go after my blog detailing my experience with MS. STAY CLASSY BLOG SPAMMERS. Lamers need a bot to do their work!

This in conjunction with the bookface integration not working and I fear my site will not get any traffic. Then again, when it was integrated with bookface, I don’t think anyone bothered coming here anyway. Still planning on fixing that…when I can.

And I’m awaiting my next Tysabri dose in two weeks! This is the period when I start feeling a sort of withdraw. And it’ll get worse until I am reupped on my Ty. Guess that’s the price you pay when your PML titre level is right in the danger zone.

Heat is back

Here in sunny greater Chicagoland. Yesterday was bad, today is even worse. Tomorrow is supposed to be bad too. Here look:

HOT weather
Weather chart for 2018JUN30

Unfortunately, probably due to the MS, I have learned to hate those days with a passion. If I’m not in a temperature controlled environment I am going to be sluggish all day. It’s not because I don’t want to do anything (which is likely the casse anyway), but because the heat just saps me of energy. Required effort to get things done is multiplied. That and the motivation to get things done just tanks. Add on top of it my three destructors and life is hard. I can’t clean because of the constant distractions. I can, but the little bit of motivation will have to last me all day to clean the kitchen. Something I should be able to do in a couple of hours.

So what is the takeaway. If you have MS and three destructors during a heatwave, your’e boned. Better learn to live with filth or your going to expend every bit of energy trying to fruitlessly clean house while your kids absolutely destroy it.

Damn it, and I’m trying to bring a more positive vibe to this blog….FAIL.

JCV seropositivity

Yeah, I am JCV+.

My titer level is right in the danger zone: 3.2 or 3.6.

Egads, that’s bad! I certainly don’t want PML!

But I certainly don’t want to waste away from MS. The tysabri treatment is what stops my MS progression, HARD!

That’s my dilemma: to treat with risk, or find another likely-less-effective and hopefully less risky alternative treatment, or stop treatment altogether. (though I’d like to think I’m not a moron).

I like the Tysabri, it’s way better than getting stuck in the leg every week with those arcane ABCs (in my case it was Avonex). Works like a champ, and doesn’t leave me with side effects, it’s the perfect MS drug thus far that I’ve found. If it ain’t broke, don’t fix it right?

Here is more information on PML and Tysabri.


From the linked video:

Natalizumab (Tysabri) is especially risky. “We know that the risk with natalizumab is incredibly high in the context of JC [John Cunningham] virus antibody positivity and prolonged therapy,” Dr. Berger said in an interview after his presentation.

Still, “you can safely give natalizumab for a short period of time when treating patients with aggressive MS,” he said. “I will frequently employ that strategy even in the context of JC virus antibody positivity.”


I’ve been on Tysabri since 2009. Almost 10 years . I think that’s a bit longer than a short period.

It’s like living with an invisible gun stuck against your head. Never knowing IF or WHEN it will go off!

Saw My Nuerologist’s

Office yesterday. I did not visit with the great Dr. K. No, I was instead visiting this time with his assistant…I believe her to actually be a nurse practitioner but I could be waaaay off, so I’ll stick with assistant. A number two, if you will. I flip-flop between then, so next time it’ll be the great Dr. K.

It was the typical

Dx: Keeping up with the cycling?

Me: Not nearly as much as I’d like. Two year old at home.

Dx: Anything new with the MS come up?

Mj: Nope

Dx: Your JCV levels are….oh…right the 3.mid range. Let me check with the Dr. on this one.

<Ms. Jackson Leaves for a moment, then comes back>

Dx: A JCV test is not necessary.

Dx: You’ll need a MR prior to your upcoming appointment in Decemberish

Mj: Sounds good

Dx: You will not need gad.

Mj: Even Better

Dx: How are the medications?

Mj: Good, but I double up on the baclofen sometimes at night when my leg is really bothering me.

Dx: Do we need to increase the dosage?

Mj: Probably not, shortly after the infusion I’ll decrease to one baclofen a day. Then I’ll go a few weeks without one. Then I’ll start feeling the tightness again, so I’ll gradually increase to the three per day. Sometimes, especially around two weeks before infusion, I’ll double up at the end of the day which would make it four a day

Dx: Well, it seems like it’s working for ya. Anything else I should know?

Mj: Just that the tightness in my leg seems to have gotten worse. I feel tight all the way up to my back now.

Dx: Keep up the stretching. And Try to exercise.

Mj: Sounds good

Dx: Anything else?

Mj: I don’t believe so

Dx: Ok, good to see ya. If anything comes up, let us know.

Mj: Thank you

 

That is my recollection of the appointment anyway. Could’ve been completely different. MS brain and all. Next appointment is scheduled at 9am in December.