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.
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.
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!
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.
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.
Got the play set done yesterday. Put the last few touches on it.
Spent the last two days assembling a swing set for my children.
Wow – that was a lot of work. My upper body is soooore boy, let me tell you.
Two days into it and we’re almost done.
All I have to do is assemble the teeter tauter (sp?) and assemble the cafe awning. And drive the stakes into the ground so the kids can actually swing on the swings.
Unfortunately, today – the first day of spring break for my kids – it is supposed to snow and be generally crappy outside. So I suppose we won’t be able to use it today. That’s OK, they played on it yesterday while we were building it. Which wasn’t a frustration at all.
Yeah the fun of autoimmune problems. I’ve got a bright red patchy spot on my skin that itches like…well, I have no good analogy, but it is really, really itchy. I scratch, which feels better temporarily, but it only inures the area I am scratching and it’ll be itchy again as soon as I stop. I have been putting moisturizing lotion on it, which isn’t really helping. I ran f of the hydro-cortisone valerate (HV). That stuff really helps, takes away the itchy and burning feeling, but it requires a doctors authorization get refilled, and I don’t want to have a dermatologist visit to get some HV. It drives me insane.
Aren’t we at the point where medications applied to your skin should be available OTC? Why does society deem that I need to visit a doctor to obtain a prescription for my skin? I know what I need. I know what is the cure to this problem. Just let me have it without any further hoops through which to jump. I don’t want the indignity of having someone probe my skin, but I want the relief from my immune system. This happens every year around this time too.
I’ve missed a week worth of deadlines now. Busy. What can I say?
The MS has been unusually rough this go. Usually after my Tysabri, things come around. But not so this time. A lot of issues that go away after a Tysabri infusion just haven’t left this time.
The spastic calf is one of my biggest complaints. Other issues are popping up too. As always it goes down to is it MS or am I just getting older. I’ll give it the weekend and see what happens.
So yeah, a lot on my plate. I updated the framework of my personal blog, which required a different theme. Totally different look. Not sure if I’m happy with it. All in the back-end of things. I prefer to have the OS’s native flavor package installed anyway. Which actually puts me back a couple of versions of the framework. I am also trying to get that working on a beta server now. #DIGRESSING
On top of it all we’re moving into the home improvement part of the end-of-winter around here. Lots of preparation for a tremendous amount small jobs. That’s the thing. The only time I’ve let someone in my house to work on it was when we first had sewer problems. The guy who failed at fixing the sewer problem the time before. And the HVAC guy once right after we moved in. Wouldn’t you know it there was enough construction dust in this house to keep clogging up the furnace filter ever two weeks when we first moved in a few years back. Awesome dude put it under the warranty
And yes, I will attempt to resume an attempt at normal posting.
I received a piece of mail from Blue Cross Blue Shield of Illinois this week. And they’ve approved my Tysabri treatment as medically necessary.
WELL NO DUH!
I won’t be posting a version of this document to preserve my privacy, but I assure you, the bureaucrats sent it to me.
Was this supposed to make me feel better?
Holy Jeeze. The Bureaucracy of this country…perhaps world…is just too damned much at this point. The last thing I want to worry about is my insurance company denying my treatment because they deem it not medically necessary. What is to prevent them from taking such a stance? I’m costing them a bunch through no fault of my own. Isn’t that for what is health insurance?
Yes, I know they have to do it because of lawyer and whatnot. I don’t have to like it.