It has been a while since I have done an update to this blog, so I thought I would do a wrap up to bring everyone who stumbles across this up to speed. I'll be using Google Voice to dictate this since my typing has become worse over time due to whatever malady is affecting me.
As an update, a little over a year ago I was diagnosed with ALS, also known as Lou Gehrig's disease. Getting that diagnosis was very troubling and I have to admit that I was in a bit of a funk for a while. However after a few months I began to accept it and decided I was going to enjoy things more and more. Fast forward to March of 2016. My neurologist decided to change his diagnosis from “ALS” to “unkown”. My neuro has stated that my progression has been much slower than he had anticipated and right now the affected regions of my body are limited to the left side. With that information he was beginning to think that maybe it was not ALS but possibly something known as multifocal motor neuropathy. MMN Is an autoimmune disorder that does not have a cure, but can be treated. The treatments are insanely expensive and need to be administered in an infusion center once a month. My neurologist set up an appointment to begin the first treatment about 6 weeks ago. Then one month after the initial treatment I went on my second one. For anyone who has not had to endure autoimmune therapy before, it is not pleasant. The infusion meds, in my case Privigen, have a history of giving the recipient massive headaches, flu-like symptoms, nausea, and other allergic reactions. These are the common side effects. Sometimes with drugs I skip the side effects all together but with Privigen I get them all :-) Generally speaking the rest of that day I am completely useless. Not that there's much of the day left, considering infusion therapy takes about 6 hours and that does not count my drive time to and from the center in Dallas.
So, with those two treatments under my belt, I am not sure I feel any better but I certainly do not feel worse. As a matter of fact usually the day after my procedure I feel pretty good but that is a short-lived pleasantness. Once day two hits, I am back to my normal imperfect self. I will get one more infusion treatment before my neurologist sees me again to make his evaluation of the therapy. The IVIG therapy I am receiving is about 70 to 80% effective in patients with autoimmune disorders. There are more effective drugs, but their side effects are extremely severe. Most of these treatments are anti-rejection type drugs and you have to take multiple other drugs to counteract the side effects of those.
So to make a long story short, I am no closer to knowing what is wrong with me than I was a year ago.
My most prominent symptoms:
* Cramping
* Muscle twitching
* Muscle atrophy in my left hand and arm
* Loss of fine motor function in my left hand
* Fatigue
Seriously, I am in bed each night by 9:30 unless I have had any caffeine later in the day. I have had to hire people to mow my grass and do other manual labor as I am just too pooped to do it. I still walk each day but I am very tired by the time I get home.
Since I do not know the extent of my illness, I decided to do something for myself a couple of months ago. A buddy of mine and I drove out to Roswell, New Mexico on a bit of a geek pilgrimage. I've always wanted to go there and my traveling companion Allen, enjoys taking road trips through New Mexico (he has family in Albuquerque) so he was a great logical choice. Long story short, we spent a lot of time Geocaching on the 4 day Excursion. I will admit that it seemed like the bigger part of this trip was geared towards more Allen's desire to hit specific geocaches and since I don't geocache as much anymore it wasn't as important to me as it was to him but I had to admit some of the places he led me to were pretty cool. We headed out into the desert, drove up on the top of mesas, and headed out into some pretty out-of-the-way places. I have a few pictures that I will cherish because it is something one does not get to do all the time. I cannot complain about the time spent. I really enjoyed myself.
One of the things I wanted to do while I was in New Mexico was play Ingress outside of my home area but I did not get to do as much of it since Allen's agenda was different than mine. I guess I could have been a little more forceful about it but he is not an Ingress player and I was not able to convince him into getting started so it would have been a little selfish of me the to spend hours playing Ingress since only I would have enjoyed it. With the geocaching it was something we both can enjoy. Who knows one of these days maybe I'll go back and the trip will be all about playing Ingress :-) HAHA.
The local Ingress scene has been pretty interesting as of late. One of the more prolific players in the area passed away while he was traveling in Japan. He was one of the enlightened agents, so he was part of the opposing faction but none the less we mourn his passing. There was an agreement made, which I found out a bit too late, to keep his portals alive in his memory. The only problem was that other people started taking advantage of this and started creating strong fields knowing that the resistance would not touch those portals. I got a little angry and told a few players that I have no problem keeping his memory alive but not at my expense. So I targetted in a couple of the portals people had been building on and took them down. I did however leave two unmolested in his memory. I am an Ingress Player but I am not heartless.
With that agent no longer around as part of the opposing faction, several areas are less active than they used to be and that means my portals and fields in those areas stay up longer than they used to. Many areas are still hotly contested, especially the one across the street from my house. We have three or four resistance agents who constantly work on keeping the park as blue as possible. However there are a couple of opposing agents who come in there everyday to do their share of damage. I am not sure what they gain out of it because what few AP they get by destroying a few fields, I easily triple by rebuilding it when I get off work. If the park is completely blue and I do not need gear, I will use the Ingress intel map to seek out anchor portals to collect as many points as possible and disrupt the enemy. Last night two Anchor portals netted me over 40000 AP. Not bad for a few minutes work.
A young couple who work in our building on the janitorial staff recently started playing Ingress as well. We have taken them under our wing and help them out with as much knowledge as we could impart on them. Paul and his wife are very nice people and I enjoy talking to them when I can. They live close by and only play Ingress in a very limited area so we try to give them every benefit that we can. Paul recently reached level 8 and is no longer a Smurfling. I used to think I was a pack rat with gear until I saw his reserves. He is a smart player and saves a lot for a rainy day.
I received a bit of a disappointment the other day as a couple of my Guardians fell to an opposing agent over the weekend. I actually was very surprised they lasted as long as they did considering they are right by a busy road but stranger things happen. Unfortunately I do not have any other candidates for Guardians at this time. The Enlightened are pretty good at hunting them down. Hat's off to them.
A guardian badge is something everyone strives for but it is very difficult to get the Onyx level Badge. I am currently working on my Trekker Onyx badge and it is possible that I will get it by July. if that holds true then all I need is about 10 million more AP to get to level 16. Getting to level 16 is my short-term goal, with my long-term goal of being able to collect a platinum badge for every category. I am already gold in most categories and platinum is just the next step but it is a big step. A few of those will be hard to get.
Many players do not concentrate enough on collecting badges, they are simply content with walking into an opposing factions area and destroying portals, which is fine if you have no strategy involved and all you like to do is disrupt things but to each his own, there is no one way to play this game. Different people have different ways of enjoying themselves and if being an anchor killer is something you enjoy, then I suggest you keep doing it. However do not complain that you're stuck in that level 10 or 11 when you have the points for level 12 or 13 but not the badges. As I explained to my friend Paul you have to plan ahead for your levels. I was able to plan ahead until I got to Level 13 or so, then I had to work hard to get the badges I needed to go further.
I had to laugh at my friend Wayne the other day. He is convinced on of the local Enlightened Ingress families is cheating because they always seem to have so much high leveled gear. I told him that I did not care if they cheated or not and that if he wanted to get ore high level gear, all he had to do was hack more. Wayne's Ingress playing time and areas are pretty limited but to his credit he can do a lot of disrupting when he puts his mind to it. He only needs to hack and Glyph hack more portals.
Speaking of glyph hacking, a couple of months ago I finally started glyph hacking and after some practice I am getting fairly good at it. I am almost at my gold badge thanks to a plethora of level 6 and level 7 portals in the area. I have to admit it is nice getting lots of gear from each portal I hack!
