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.

Certainly Borked

If you haven’t noticed, my posts aren’t showing up on social media sites.

Why? Well, it’s technical. Stay tuned if you’re interested.

XMLRPC.PHP, how I loathe you right now. If you’re familiar with press, you’ll know that this is a common attack vector. And I’ve been pwned way back when press first came out, so i turned it off when I moved servers.

The only problem, it broke my social site sharing via jetpack. I’ve spend days trying to debug this one, but I can not figure it out quite yet. Please don’t mind the social media break. I’m not a big fan anyway, but since that is the only way most of you will see my posts, I’ll have to get it fixed. Unless you’re an email subscriber.

AMPlified Woes

If you noticed I haven’t posted for a while, that is because the text boxes on my new post page were missing. Apparently it was due to the Accelerate Mobile Pages addition from El Goog. I was able to reproduce the problem on both my sites. I can’t blame El Goog for the problem, as it may be a misconfiguration on my server. None-the-less, I’ve turned off the addition and it seems as though I can add posts again. Yeah, another (major) problem off the list.

Now it is back to fixing the connections to social media. I’m sure that people assume I’m offline as my posts aren’t showing up on FB/Twit/G+.

Per Unusual

Ive been crazy busy this spring. This week it has been installing a proper antenna on my roof, not to mention overcoming my acrophobia, which is IMHO not a phobia but a survival instinct. Anyway, here’s the antenna.
The other big thing that has happened thos week is my youngest daughter has officially killed my laptop by dumping a bowl of milk and cereal on it. FML^∞. It has made going on the internet a lot more difficult. Like posting this update via my phone. Seriously, F M L.

My Eldest Daughter

Is going to MS youth camp this summer. I’m not exactly sure she even understands what is MS, and I’m not going to force it on her until she asks for more information. But none-the-less, we had an orientation day at the Adler planetarium yesterday. It was fun, and I haven’t been out there in many many years. It is also making me nervous to send my firstborn away for an entire week. I’m sure I’ll persevere, as I always do.

Oh man

I broke my site’s permalinks and have no time to troubleshoot. Please hold while the post links don’t work.
UPDATE: Wow, do NOT change permalinks without first planning. Bad things will happen otherwise.

Hope

Let me talk about hope.  A term that is tossed around a lot when MS is brought up.
It kind of feels like a distraction, to be completely honest. I understand the end result is the same. A world free of MS, or whatever is said about the hope to bring an end to MS.
This is where I begin my rant about capitalism and start sounding a little bit conspiracy theorist. So if you’re not inclined, move along please. This is my personal opinion, and if you don’t like it tough.
Last I checked (which was a while ago – it could have increased significantly), my Tysabri infusion bills my insurance company around $12,000 every time I get 300mils of natilizumab infused into my veins. Granted, due to the PML risk my infusions got moved to every two months, so it works out to ~$6,000 per month to treat my Multiple Sclerosis. That is more than I (or my family as a whole) make in a month.
Now I ask a question. With such a cash cow, do you really think these huge drug companies are looking for a one time cure (no recurring income for the drug companies) or are they just going to keep putting out more and more expensive treatments to keep you going so that they can keep draining you financially (guaranteed income for the drug companies)? You can guess what I think about a cure coming from a major drug maker.
Per usual  it is up to the little guy, the mad scientists, to come up with a cure to MS. Too bad all that time and effort is being wasted on treatments. But I am happy to have them. Tysabri really seems to have worked well for me. As always, if you ignore the PML risk.

Oh Yeah

I am starting to feel so much better. I must’ve gotten a good dose of the Ty this time. Honestly, I was on the way up on the drive home after the infusion. Feeling good today. Not perfect. The muscles are still not yet fully relaxed in my neck and calf. My entire body too, but those spots especially. I also feel so full of life in my head, if that makes sense. I feel like I’ve been rejuvinated. Tysabri, you are a beautiful drug! Even if you do have a dark side.
I’ve been wondering a lot as of late if I’d even be aware of that muscle tightness were I not to relief via my infusions. Of if relief were not brought, would I be a miserable person at this point? I surely do hope that I never meet the dark side of Tysabri.