Sometimes when you try to pretend everything's normal... your disease smacks you back into reality

I am trying to learn how to live with this disease, I really am... but some days I just hate my life a little bit. So, I ran out of Imuran. I messaged my doctor last week asking him to place a prescription for me, but he wouldn't reply. I was getting close to the end of the bottle... then I messaged my rheumatologist. He helped, but due to some miscommunication, I thought he hadn't placed the prescription yet, so I tried to use my old prescription (which has 7 refills left).

I've done this before: they just call the other pharmacy and transfer the prescription, and you're good to go. And the great thing is that there's a pharmacy across the street. Man, life is sweet! So I tell my wife to take the car and don't worry about it 'cause I can easily walk across the street. Well then... this morning I take my empty bottle and go across the street. The nice lady at the pharmacy informs me that it'll just take a moment, but I need to fill a form because it's the first time I use the pharmacy. OK, so I go through the form... and after going through that, the pharmacist tells me that I will have to wait until tomorrow afternoon because they don't have the medicine and have to order it. The point of doing this was not skipping a dose, so I think "well, I can walk to the other pharmacy down the street and get it today". So I tell them that I will just get it somewhere else.

Here's where hell started for me. When you have a disease that affects your muscles the problem is that you don't know at what point they will start breaking down. I learned that during the moving a few weeks ago. I really thought I could make this walk. But at some point the pain started to show. My lower legs were getting sore and swollen... I knew this wasn't good as I was starting having difficulty walking. But I was closer to the pharmacy than I was from home, so I thought I might as well make it worth it and get the medicine. Well the next pharmacy didn't have the medicine either... neither did the next :-( And at this point the pain is getting intense...

As I am starting my way back home, I see a sign for a CVS pharmacy on the other side of the street. It was tough as I couldn't cross there, but had to go around to get through the crosswalk, but I got there. Well they did have it... but they couldn't sell it to me. See, the prescription is from my previous doctor in Kansas, and although they could contact the pharmacy, they couldn't get his DEA number which by California's Law they need to sell me the medicine. So all this was for nothing... I think the lady saw the pain in my face, because she gave a daily dose in my old bottle...

And now... I had to get back home. It was very, very painful. The walk back home, of course, seemed twice as long. But I got home. Right now my legs are very sore, I'm limping... barely walking. In the end I walked 8-12 blocks. Now I know I can't do this anymore...

The only good news is that I figured the misunderstanding with my doctor and he placed the prescription at the pharmacy close to home. So I should be fine tomorrow, without a long walk... the problem is I don't know if I can even walk across the street now :-(

Oh well, hopefully I'll feel better tomorrow...

Fun with Scribblenauts: Bioterrorist Savior :-P

I got Scribblenauts yesterday, and I'm having a blast with it. It is everything it was hyped to be, and then some. I wanted to post about a particular level I just solved and the interesting outcome.

So, in Scribblnauts there are two types of levels: puzzle levels and action levels. The level in question was a puzzle level. Basically, a scenarion is given to you, with a hint that tells you what you need to do in order to make the 'starite' appear (which is just a star you need to collect to complete the level). In this case, there was a soccer goal, a goalie, and a referee. The hint given was "Score!". Now, the guy protecting the goal was like the best of all time... no matter how you shoot the soccer ball (which you need to summon), he always blocks the shot. It's obvious at this point I have to get rid of this guy. I could summon a gun and shoot him... but you get merit badges for solving puzzles in certain ways, in particular, without killing... so I don't want to kill him.

After some though I decide to summon "Chloroform". As expected, when I use it on the goalie he passes out. But when I shoot he wakes up and blocks the shot! (I think this was probably a glitch in the game, where they forgot to code in that being asleep overrides the behavior of blocking the shot). But I just use the chloroform on him again, and he passes out inside the goal, with ball in his hands... solved!

The funny thing happened in the next screen where you get the summary of how you did, and your merit badges. As I expected, I got the "savior" badge for not killing the goalie... but I also got the "Bioterrorist" badge for using chloroform! :-P It was just really funny how the game tagged me a "Bioterrorist Savior" :-)

These are just the kind of experiences that make this game special. If you own a DS, this is a must have title! :-)

All settled in California

Well, after a week or so I can say I am completely settled in California, with loving wife and two beautiful daughters. Last week was all about doctor's visits and lab tests. I had to find a new primary care physician and a new specialist to follow up on my disease. Everything went well and I am very happy with the doctors that will be helping me from now on :-) One interesting thing: the main specialist that followed my case in Kansas was a Neurologist, but now I will be seen by a Rheumatologist :-)

One important thing was getting my monthly lab tests done. My PCP ordered them and, as I feared from the way I have been feeling, the CK levels went significantly up to almost 900... not good at all. My rheumatologist agreed and suggested to increase the dose of Prednisone. So now I am on 20mg of Prednisone daily (instead of every other day). I'll be seeing him again in two weeks, when we'll keep discussing future alternatives...

So, all in all, I'm pretty much settled now. Very happy to be finally reunited with my family. They've been a little put off with my general mood (caused by the medicine), but nothing bad :-) It's funny... the prednisone, among all the side effects, causes an increase in irritability. Which basically means that most of the time, even though I'm not necessarily mad, I might act as if I was, responding aggressively to stimuli. Or, sometimes I just feel like I don't want to talk to anyone, just want to be left alone. When I lived alone, I didn't notice this much (although my closest friends would mention to me all the time that I was all around more aggressive). But now, when I have my family around all the time, I have noticed it myself. So, when I'm conscious that I'm just in a bad mood, I try walk away a little, maybe go for a nap or something, so as not to upset anyone :-)

It's all a process, but I'm just learning to live with this...