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!

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.

Not that I’m complaining

But I woke up cold during the night.  After the blazing heat and HUMIDITY, we finally have a weekend of good weather. It gone down to a bone chlling 11.6°C (63°F). At least it’s bone chlling when your fans are blowing on you full blast.  It’ll be gone tomorrow as the 90% humidity returns. So will the air conditioning. As much as I hate using it, I just can’t stand the high humidity. It feels like you can’t loose any heat.

It’s been a rough summer for humidity. I’ll need to hop on the bike, as it’s like being in AC when you’re riding at speed. Plus I need to shed some of the weight I’ve gained from not riding.

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.

I’d Like to Thank

the Cantalupo family for making MS camp possible this year, in which we sent our oldest daughter.  She’s been gone for a week…the longest ever going without her. In fact there was no electronic devices allowed at camp (but you could have them on the bus), so all I had to rely on was the photos that my wife showed me that the camp had posted on bookface.  It looked like fun, I hope it was. I’ll find out after Shelby picks her up this evening.

MSYC2018
Camp Icaghowan in Amery, WI

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!