It's October and Conference is Over

It's the Friday after Conference, and I've been able to keep working and doing all the things I want. That's always a good thing. As always, Conference was wonderful. Being in California we also had a special broadcast on Wednesday regarding the issues of same sex marriage. This is going to be a very interesting month for all sorts of reasons.

The weather has been very warm this week. It finally cooled off, but I understand we are expecting it to heat back up. We splurged and bought an air conditioner. I know it's really a luxury, in case you don't know the average temperature in Arroyo Grande is just under seventy degrees, this time of year is when it's warmer. I can honestly say that I have weathered the heat this time this time really well.

I had my latest appointment with Dr. Amir, she thinks I'm doing well. In fact we are trying to see if I can stop taking the Amantadine. I was taking 100 mg twice per day. Two days ago I reduced that dosage to 100 mg once a day. Tomorrow I'll take the last dose and then we'll see how the next four days goes. It would be really good if I could actually do well with fewer drugs, we'll see how this goes.

I Don't Remember...

I'm not sure how this happened. Could somebody please tell me how we got here? I mean I remember being a fun person. I remember being the first guy to know all the new music, but I've had two experiences this week that have made me feel like I've suddenly gotten REALLY OLD.

First, readers of this blog know that I'm ridding public transit. It was purely because I decided it was a waste of money to spend over $200 per month compared to a $30 fee for a monthly pass. I'm really not doing it for the environmental issues, it is purely economical for me. I guess it's just not worth the difference in price to be cool enough to drive in my own personal bubble. Yeah you meet interesting people on the bus, but hey I meet interesting people at work too, so that's just fine. Let me tell you, I had absolutely no idea how interesting the folks would be. I could write and write about the bus, who knows maybe I will, but what I'm really saying is that I had absolutely no idea how interesting the people watching would get. Let me tell you more about it.

I was sitting on the bus one day, just minding my own business. We were heading home, it had been a long day. I had forgotten my iPod. I like to listen to things while I ride along, and wasn't able to. I was a little disappointed, but I got to do some reading during lunch, and that was fine. I was just sitting on the bus, looking out the window. There was an empty seat next to me, and the bus is usually full, so I knew someone would be sitting down next to me. Did I mention I was fine with that. I don't like to stand all the way home, it takes half an hour, so why not offer the seat to those getting on?

This young man, probably in his late 20's (remember, Will is now 24 years old), so I'm fine with someone this age sitting with me. As he sits down, I know that he's been smoking (not tobacco), and was very greasy (as in dirty), and it was obvious to me that he had been working. He was carrying a small day-pack, and a skateboard. I had some off brand MP3 player, and was listening to something loud enough that I couldn't hear what it was, but loud enough I could hear the bus over the noise of the bus.

I smiled at him and asked how his day was? He explained that he was happy to have it be the end of the day, and was ready to relax. I smiled and nodded. He didn't ask me about mine, and that's fine, I'm happy to sit in silence. About ten minutes later he patted me on my shoulder, took off one of his ear buds and offered it to me, since it was a cool song. The part that really got to me was this young man was offering me something that had just been in dirty ear. The earbud was white, well OK it was really a dungy grey, and black oil smears on it. I sat there in my wool trousers, and button down long sleeve dress shirt and thought "I don't want those things in my ears."

Then tonight, I get home from work and the neighbor boy across the street is have a band practice in his garage. It's not that these kids are bad, don't get me wrong. I would much rather have these kids doing this, than lots of other things. But it was so loud that Joanne and I couldn't talk over the noise from across the street and down two doors. I let them play for about an hour (they had already played for about an hour before I got home). And finally at 6:00 I decided to o across the street and talk to the parents. See if there was any way they could turn things down a bit. I was not able to walk up the entire driveway before the band stopped. They were playing in their garage. They are teenagers, and they are good kids. I've watched the one young man grow up, he tries hard to be good. The garage door was about half down, and the sound was just rattling around in this garage. Did I mention that these young men are developing talents? (Read that there was some thought from me that they might be a tad musically challenged.)

One of the young men recognized me, "Hi Mr. Johnson! How are you?", the drummer greeted me. I have no idea who this kid is, but then there are lots of kids in Scouts in the community that know me that I have no idea who they are. I explained to them, that while I didn't want them to stop playing I had to have them turn it down. 

I also expressed my real fear, "Hey guys I don't want to be the old grey haired cranky old man, but you are rattling my walls. Can you help me?" We laughed for a minute, and they offered to close the garage door. I tried to convince them that they could turn their amps down and get the same results. We visited some more, I knew I had to get out of their hair, and let them go. They told me they wouldn't continue "band practice" late, and I smiled and turned the walk away. I was not able to get across the street before they had their garage door all the way down, and they've now been playing for about another hour.

We'll see how this goes. I'm just amazed that I have turned into this old guy that complains about lousy music. Not too long ago, I would have thought any live music is good. Now I'm complaining because these kids are just making too much racket! Wow I don't remember getting old...

What Happened To August?

So here we are on the third day of September, and I'm wondering, "What happened to August?" Well, here's what I can tell you (only because it's about all I remember). Work, church, family and stuff.

I started feeling pretty good about a week after the 3 day treatment. I really don't want to repeat it again, but I've learned that most people don't feel better immediately after it, so that makes it easier to deal with. Dr Amir has prescribed another drug and it seems to help me with my strength. I'll see if that helps. It's been so long that I have felt this good, it really helps.

Work is still progressing. I'm still trying to contribute as best I can, and most days it just grids from hour to hour. I do think I'm still helping folks, and that makes me happy.

The 29th of August is my birthday, this year has really been a wild ride. I don't think I'm ready for this many changes next year, but we'll have to wait and see.

I'll try to do better in September with more posts, but this at least gets you up to speed on me.

So What's Going On Now?

So after I was diagnosed with MS Dr. Amir gave me a grocery list of medicines, and advice about how to take care of myself. I started taking Betaseron. (For those that don't know, it is an artificial substance that replicates what my body took from my nervous system, that's called myelin. The idea is simple, I inject a substance that's easier to get to than in my central nervous system, and the demyelination is either slowed or hopefully stopped.)

There's a whole list and I don't want to sound like I'm whining so I'll just stop to say that I now routinely take a sleeping pill nightly, have a pill box that has either seven or eight pills in it (depending if I have a shot that day or not)

I was just going along, and thinking things were fine, and then the weather got hot. It didn't get warm, it was hot, and I really became aware of how bad I feel when the temperature gets in the 90's. I just decided that I would go through this time, and things would cool back down and I'd be fine. As luck had it, I had a follow up with Dr. Amir. She checked me all over and decided that I had experienced a relapse. She decided that I needed to have a treatment with Solu-medrol. She explained it was given in an IV that I would need to take over three days. It would take between three and four hours each day, and that I could either do it at the hospital or we could set things up to do this at home. Something about spending nine to twelve hours over three days in the hospital made this concept of doing it at home much better. So we got things cleared through the insurance, and set things up for this treatment at home.

I've included some pictures of how things went. (I hope it's not too graphic, I don't want to shock anyone.)

The infusion site is all set for the next three days.

Wrapped up, this is what helped the infusion feel better.

I wrapped it too when I wasn't doing the drip, 

since the infusion was left in my arm for three days.

That's plastic wrap on my arm, I'm all set for a shower!

Once we were done, I must admit I didn't feel any better. In fact I felt much worse. I hope I never have to do this procedure again. I couldn't sleep, something about having something in my arm, made it so I couldn't sleep well. I later discovered that some of the side effects were lose of sleep, restlessness, and general aches and pains. Yup I had all of that.

It took about a week for me to get over all of those symptoms, but now I'm feeling pretty good. The negatives I see are that I really do need to keep cool, I really do need my rest, and I really shouldn't just try to gut things through.

More MS Notes

Note: I was going to post all about what happened in the past two weeks, but I realized that I really hadn't talked much about how all this other stuff is going for me. I'll make my next post about how that all works.

In the description I said that I was going to talk about my Multiple Sclerosis, and then I posted jokes. Now that might not sound like I'm coming through with what I said, but unless you've dealt with the whole issue, you might not understand. So let me try to explain. It's really easy to get very overwhelmed when you start this journey, that's at least what I've been told. (As well as what I've found) It took me a while, in fact, I'm not sure I completely have gotten over the concept that I have a life altering diagnosis. I was diagnosed in October by my General Practitioner, a personal friend, and then it was a referral to a specialist, and then an entire battery of tests. The first set were with a special Physical Therapist (that specialises in MS treatments, and diagnosis). After a series of tests that left me fairly upset since I had lots of red coded results, and a very supportive staff, I knew things were not right. The PT looked at me and asked "Do you know why you're here?" I explained that I was referred to get an evaluation for MS, he smiled and said "It's not my place to say, but there is no doubt in my mind we'll be seeing more of each other."

I then got to have some tests on my brain and how signals from my eyes, ears, hands and feet made it to my brain. And again the tech asked what they were testing. Once again my response and then once again a reaction of "Well yeah, things are not what would be seen as 'normal' results." Finally in January, a repeat MRI, this time lots of time on my neck and head, and no reaction at all from these techs, but they were much more careful getting me off their machine that they were when I showed up. And then later that month Dr. Mary Amir (my neurologist) had me in her office to tell me that she knew exactly what the problem was and where it was located. We got to work getting me up to speed on how to deal with MS.

It seems that I have an area in my spinal chord near as it's in my neck, about the diameter of a toothpick and about 1/3 of an inch long that just doesn't work. I'm just missing parts of my spinal chord. Sort of a strange feeling when you think about it. How something that little could mess with your left foot, parts of your left leg, and the signals from your inner-ear.

M & M Genetics

I found this great story, and since things are not really being positive at the moment, I thought I'd post it here.This actually comes from a mail list that I get at work if you want similar jokes send an email to:
good-clean-fun-subscribe@yahoogroups.com

Anyway, on with the smiles, ENJOY!


Whenever I get a package of plain M&Ms, I make it my duty to continue the strength and robustness of the candy as a species. To this end, I hold M&M duels. Taking two candies between my thumb and forefinger, I apply pressure, squeezing them together until one of them cracks and splinters. That is the "loser," and I eat the inferior one immediately. The winner
gets to go another round.

I have found that, in general, the brown and red M&Ms are tougher, and the newer blue ones are genetically inferior. I have hypothesized that the blue M&Ms as a race cannot survive long in the intense theatre of competition that is the modern candy and snack-food world. Occasionally I will get a mutation, a candy that is misshapen, or pointier, or flatter than the rest. Almost invariably this proves to be a weakness, but on very rare occasions it gives the candy extra strength. In this way, the species continues to adapt to its environment.

When I reach the end of the pack, I am left with one M&M, the strongest of the herd. Since it would make no sense to eat this one as well, I pack it neatly in an envelope and send it to:
M&M Mars
A Division of Mars, Inc.
Hackettstown, NJ 17840-1503
along with a 3x5 card reading, "Please use this M&M for breeding purposes."

This week they wrote back to thank me, and sent me a coupon for a free 1/2 pound bag of plain M&Ms. I consider this "grant money." I have set aside the weekend for a grand tournament. From a field of hundreds, we will discover the True Champion.

There can be only one.

Another Fourth, Another Weekend

This weekend was the 4th of July. We went over to friends for the evening. They had a great party. BBQ hot-dogs & peppers, potato salad, pasta salad, home made ice cream, Joanne's gingersnaps, it was wonderful. Price of admission was you had to bring some fire works. I think we had about 60 minutes of excitement. It really was fun. I did too much and really had to lay low for the rest of the weekend.

Work today was fine. We had a fairly slow day, and I was able to do more study for my Microsoft Certified Desktop Support Technician certification. My supervisor wants to have all the crew certified, and so I'm still trying to do that. I'm finding it harder and harder to stay focused on this. I just can't seem to remember things like I used to.

I'll just keep pushing and see where we go. This week, I get to have my car worked on and see what other fun things happen. Will is having a friend from Georgia in for a week. This is going to be very interesting.