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!

Uh, mother nature

It has been waaaayyy too hot for me this early summer. A heat warning is issued for Sunday. The day my son has a baseball game.

It’s cool. I’ve only have multiple sclerosis. Which definitely does not like the heat and makes my body feel useless when it’s so hot and humid. So thanks for nothing mother nature. Though I think it is really the fault of the climate deniers, but that is another story for another day.

So yeah, climate…some good news. My buddy’s guy came over and checked out our air conditioner. Twas overfilled as I had suspected. luckily, it seems as though nothing really got blown up. So very very lucky. He drained the excess R410a, and it’s not kicking off anymore. Luckily the AC unit is fairly new, so it was able to realize it was overcharged and was kicking off as a safety feature. Lucky, as it kept it from destroying itself. I am so thankful to Mark and Jaimie for coming out and getting my AC unit working again. It is so important on a level that non-MSers will never understand. Plus knowing that the AC isn’t broken anymore is such a load off my shoulders. Thanks guys.

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.

The Heeeeeeat : (

And it’ll only get worse.

So what’s worse than having MS? Having MS and going into a summer which is supposed to be extremely hot and having a destroyed air conditioner.

There is no apparent layman solution. I AM F***ED!