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!

What do MSers hate?

HEAT!

I absolutely loathe when temperatures hit above 90°F (even 80°F with high humidity sucks).

And that is where the problem lies. Our air conditioner took a dump. Like, i’m pretty sure it’s departed from the Earth. I’m no HVAC tech, but when it gets seriously overfilled and then the next day there is a sudden 20psi drop of r410a, it’s not a good thing. Plus the outdoor unit just kicks on and then off now. At least before it didn’t cool that much but would remove the humidity from the air, but now that is gone.

So I’ve gotta either tech this myself or call someone. If I call someone do I have them actually troubleshoot the problem with the AC or do I have them just install a new unit? I f***ing hate calling someone, but I’m kind of up the creek here. At least we know people in the HVAC business. An TFG it’s only in the 70s this week.

The worst part of it all is I’ve been waking up way earlier than normal with thoughts of ‘Damn it, the AC is broken, and there isn’t much I can do about it.’

It happens when something weighs seriously on my mind.

 

I know its been a few weeks

But I was seriously fighting the tysabri drag. Typical for the week or two before an infusion. But alas, on Wednesday of this week – which also contained a birthday – I received my dose of Tysabri. I did pretty well as we had to celebrate the birthday, but around ten I just ran out of energy and ended up falling asleep.  Early for me. But I’m getting ahead of myself.

So I show up to the AIC for my infusion, and informed I am with one of the best sticks. YES! I relaxed a bit inside after doing a happy dance in my head. I hesitate to call her my favorite AIC nurse as she’s a packer’s fan (along with another AIC nurse as I found out), but she is a damn good stick with that needle. I appreciate that way more than her sports allegiances detract. And she knows I’m a Bears fan, so she could take it out on me. But the Packers have been giving it to the Bears lately, so perhaps she doesn’t feel the need? I’m digressing again. I barely felt the needle this time.

Couldn't have gone better
Infusion level: Simple

After the worst part, the needle stick, it was the typical smooth sailing. Lunch was served almost immediately after my needle stick. Hour infusing followed by an hour observation period. They don’t really watch you for an hour they just come check on you every once in a while and will eventually ask if you’re ready to go home. I rarely am, but I can’t hold the hospital room any longer ; )

So infusion day +1 (yesterday) I wasn’t feeling totally back, and it can take up to a week to feel fully energized. Today I’m feeling pretty good. Might enjoy this nice weather and go for a bike ride tomorrow.