Really Feeling Run Down Lately

I have noticed over the past two weeks or so that my energy level is pretty low.  I wake up sore and tired which is the way I go to bed, most of the time.  Most of it is my back and I have been having general back issues for years...they are just worse now.

I have been trying to walk some each day (down to a couple of miles each day now instead of the 3-5 I used to do) with half of that at lunch and the rest as soon as I get off work.  It is a slow walk, playing Ingress along the way (care to become an agent?  Send me your e-mail address and I will send you an invite.) I don't have the energy anymore to go at it like I used to.  I guess this is just the way things are going to be from now on.

I have also noticed that my right hand is starting to exhibit the same behavior as my left one did a few years ago which is now causing me problems getting dressed.  Buttons are much more difficult for me now as are laces.  I can usually still manipulate them, but it takes longer to do so.

Typing is a chore so I am now either voice dictating or using the "hunt and peck" method, which is slow and tiring.  Using voice dictation at work is not possible all the time due to the close proximity of the other cube dwellers in the office so I am hunt and pecker most of the time.

I set my sister up as the trustee to my Google data which was a lot less painful than I had thought it would be.  I had hoped to do the same with my Microsoft data but they do not allow that, so I will have to move any important data over to Google while I am still able.

I realized the other day that I still have 2.5 weeks of vacation left that I need to take before Jan 1, 2017.  I hope I can do some long weekends from here on out but I need to verify that with my manager.  My desire would be to take Friday as a vacation day but I might switch that to Monday since nothing usually goes on for me.  I will still be available if something important comes up.

I received notice yesterday that I have been summoned for Jury duty in November.  It has been a while since I have been summoned and even longer since I have served.  I am kinda hoping I am chosen.

Work/Health Update

Now that the fun stuff has been reported,  I can start talking about the other two issues that take up the majority of my time:   work and my health.

Work:   

I had posted a while back that my business unit (HPE ES)was going to be spun off and merged with Computer Sciences Corporation (CSC).Not too long after that announcement I was told I would have to move into a different building in preparation for that merger. I was not happy about it but I decided that I would try to make the best of it. instead of having a dedicated Cube,  I was going to be what is known as a “mobile office worker”  meaning that I would carry my laptop and whatever else I need it into the office every morning and search for an empty Hotel Cube to work from during the day. This did not sound too bad initially until I investigated the hotel cubes  and realized  most of them were very substandard  to work in. If they had a monitor it was small and very few of them had keyboards. None of them had mice. None the less I put together an adequate workstation and called it my home. other people that were forced to do the same thing became my new neighbors and we became friendly, having lunch together on occasions and chatting during our breaks.

The building I was moved to is an older building and has not been updated in many years.The network connectivity is not consistent and a few times over the last 3 months I have been unable to work from the cube that I called my own. The first time that it happened it was resolved the next day And my productivity was only minimally interrupted. the next time that it happened it affected multiple people for about 2 weeks. I cubed hopped  the first few days and then work from home the next few days. during the second week one of the gentlemen who sat near me told me he found a stable area across the hallway in the other Hotel Cube area  so I followed him and set up shop there. I contacted both the Real Estate Group as well as the facilities manager to let them know of the situation. explain to them that I needed a permanent or semi-permanent or Carrier and that you Poppin and carrying around everything that I need on a daily basis was not conducive for me to get any work done. I courtesy  copied my manager on this just so he would know it would not be surprised in case anybody asked any questions. The very next day I was visited by the facilities manager who told me to find a spot that I like that he would have that Cube assigned to me. whether or not that has been done I don't know but I am they'll happily sitting in a much better Cube That has a stable network connection.  sometime soon I plan on bringing in the rest of my office equipment that I had in my permanent Cube in the other building.   that will include a 24 inch monitor, a nice clean keyboard,  and a docking station to bring it all together.

To add to all of that, my 4-5 year old work laptop Failed to be upgraded to Windows 10 and had to be manually  rolled back to Windows 7 costing me two days work. while I will admit that a fresh reinstallation of Windows 7 has made my old machine see much better,  I was surprised on how long it took to get everything installed Kama configured, and encrypted. Normally a person would get a new laptop after 3-4 years  but in this economy and considering we are in the process of a spin merger,  I cannot get a new laptop and Windows 10 seems to fail too often on this model for them to attempt it again.

Health:

I have seen quite a bit of difference in my health since this time in 2014. 2 years ago I was running 5K and half marathon races. today I am lucky if I have the energy to walk 5K after a full day at work.  I certainly do not feel 51 years old. I feel about 10-15 years older.

In early of 2015,  I was officially diagnosed with Lou Gehrig's disease. at that time it was in the very early stages and  its effects were very limited on me. because I appeared to be progressing very slowly, my neurologist decided to attempt another treatment to see if his diagnosis was possibly incorrect. all of the other tests ruled out every possible illness with the exception of multifocal motor neuropathy (MMN).   the most common treatment for that is IVIG therapy with Privigen. The treatment for that begins with a 3 day booster (4-6 hours each day for three straight days)  that will  make even the healthiest people feel horrible. The biggest side effect it had on me was massive headaches. By the time the third day rolled around I certainly did not want to be there and the nurse to administer get my third dose said I should be proud of myself for sticking through it. She said many people do not bother and give up. I figured that if I was going to have to pay for this then I was going to stick through with it.

After the initial booster I had to come back every 30 days for a maintenance load.   With the maintenance load I would sit in an infusion chair from 4-6 hours With an IV in my arm. I had to do this every 30 days until they knew for sure whether or not the treatment was working on me. I received three or four maintenance loads  but they were not having any effect. when I went to go see my neurologist for my quarterly visit back in August he agreed with me that I did not have multifocal motor neuropathy what he was saying was a slowly progressing Lou Gehrig's disease (ALS).

Needless to say this has been tough for me to deal with. When I was first diagnosed with ALS in the back of my mind I kept thinking that eventually someone would find out that I had something else and I would be treated for it and recover.  However now the reality has set in and I am becoming more despondent each week. I am having trouble getting comfortable at night sleeping due to the pain in my left shoulder. the normal positions that I am comfortable sleeping in are not possible due to the pain add my left shoulder. I am unable to extend my left arm out Like I am signaling for a left turn. My wife tells me that I look very miserable when I am first attempting to get comfortable in bed. I guess I can get some pain meds but I really hate using them because the potential for addiction can be quite great.

I am not sure how much longer I will want to continue working. I have not saved up enough money to live off of and there is always the possibility disability but it only pays 70% and I'm not sure that my doctor will be willing to sign off on it yet. He told me once before that he would but I'm not sure if he was just telling me that or he was being sincere. I think he looks at me as being healthy enough to work so he wants me to continue. working would be excellent for my mental health but due to all these stressful changes here in the office I'm not sure it is something is conducive  to a healthy lifestyle or not.

I have vacation scheduled at the end of the month. I am not going to join my wife at the beach like she wanted me to. I'm actually quite tired of going to the beach every year and she knows it. since I'm not going with her she has decided to take an extra weight and swing by and visit a friend of hers in Georgia. that means for 2 weeks I will be on my own without any assistance around the house which is not a major problem. generally I can do most things reasonably well on my own.

During the time she is gone we will be having some work done around the house. First we have a plumber coming over to replace all of the shut-off valves in the house. next we have a contractor coming over 2 power wash and Stain our fence.   while he is there he is going to replace the turbine vents on a roof that were damaged after the last hail storm. my wife has also told me that he will be doing some touch-up work under warranty go on a couple of places on the outside of the house.

I am hoping to be able to run around with my friend Alan Mabry at least 2 or 3 days during the time she is gone. he wants to make a geocaching run into Oklahoma  And I would love to join him as we have a lot of fun on our road trips.  That road trip to Oklahoma has not been confirmed yet but if he has free time we will be going.

Perfect Conditions for a Race

As things turned out, it was a great day for a race.  It was in the mid 50's when I woke up and it was in the low 60's by race time.

I woke up feeling pretty good (no aches).  I got out of bed and took my meds immediately, since I have to wait an hour before I can eat and I should eat 1 hour before the race.  I dress, limber up, stretching a bit while nervously pacing.  I brush my teeth/rinse my mouth, check e-mail and the weather forecast for the millionth time.  All is looking good.  I get a text from a good friend in Richmond wishing me luck.  It is nice to be thought of on race day.

After an hour I eat a Clif bar (I love those things) and drink a little water.  I did a good job of hydrating the week before so I should be fine during the race.  I make a final trip to the bathroom and get my running belt (really just a fanny pack/bum bag) before heading out to the truck.

I arrive at the race location in Fairview, TX (just a few minutes from my house about 40 minutes before race time and it looks like 75% of the runners are already there.  I start nursing my Vitamin Water (Citrus flavor with caffeine) slowly, prepping my body for the run.  I mill around a bit and get a text from my runny buddy, Tom. He has arrived and is near the start line.  We meet up, discuss strategy and decide to run with the 2:15 (2 hour, 15 minute) group.  Tom can go faster but he has decided to show solidarity by running my retirement race at my pace.  I just hoped I could keep up.

The last 15 minutes go by very quickly and before I know it we are moving.  I am 60-80 feet back from the starting line and once I cross it I start my fitness app "Runkeeper".  Tom and I are on our way.   The initial swell is difficult to navigate as some of the slower runners are in the front, hindering the faster runners from getting into stride and position but after .25 miles or so Tom and I are in solid with the 2:15 group.

As we run we notice the 2:10 is very close to us and that means someone is off.  I check our pace and it appears the 2:10 group is a little slow so we push towards them.  This course shares some of the route as "The Showdown Half" that is in October which I ran last year, but where The Showdown starts off mostly flat for the first 4-5 miles, the Fairview Half starts off with a slow down hill and then over rolling hills, a long mild uphill grade, then more rolling hills towards the finish.

At mile 2 Tom takes a Race Selfie (called a "runfie") with me in it as well.  It is still early and we are both smiling.  We continue on and our pace stays pretty steady at just under 9:30/mile ... not blazing fast but I am not an athlete.  If I can keep this up I will be sitting on a PR (personal record) but we still have a long way to go.  I eat one of my Muscle Milk Energy chews  and do so each mile until mile 8.

Somewhere around mile six (and before the halfway time check) I begin to feel my left ankle throb, which is normal with the muscle mass I have lost in it. Right now the only loss I can tell is in my left side. I am determined not to let the ache and later pain keep me from completing this race as strong as I can.

Near mile 8 I can tell that I need slow down to a fast walk.  Tom jokes that I walk almost as fast as he runs at this point so he cannot really walk to keep up with me so he slows his running pace down some.  I walk 75-100 meters or so and start running again.  I do this again at mile nine and at mile 10, where Tom takes another "runfie"  of us.  During mile 11 and 12 I walk 2-3 times per mile.  At one point during mile 11, my heart rate skyrockets and I know I have to walk.A couple of younger ladies catch up to me at mile 12 and motivate me to keep going.  I start running again.

The Mile 13 marker is in sight but it is long mild uphill climb still, as it has been for the past mile or so, and I want this race to be over.  My ankle is killing me and my energy level seems low (I really did not train for this race like I should have) but the finish is just about 600 feet away.  I soldier on. The shouts of encouragement from Tom's friends and even those I do not know give me the final push to cross the line, being aware that  I need to cross the sensor strip to get my time counted.

As I cross the line I see Tom ahead of me and I have kept him in sight the entire time so he is about 45 seconds ahead of me.  I get my finishers medal and unlike last year, I manage to gather up all the snacks I can (choco milk, water,  mini bundt cake, banana, etc)  before exiting the corral.  Tom and his friends meet up with me and we pose for pics.  We chat and I go sit down.  I must look rough because Tom asks me if I am okay, and I assure him that I am (I really am. I felt much better at the end of this one than the last one because I was able to walk a bit each mile during the last 1/3 of the race).

When we go back and check the scorers table, I see that I ran a 2:07:13, which is only 30 seconds slower than my first half marathon that I ran in Oct before I had any issues with ALS symptoms in my ankle, so I am pretty stoked about this.  I still finished in the top 1/3 of all the runners...nothing to be ashamed of.

A sit and rest a bit more (while playing with a Golden who is adorable and still very much a puppy despite her adult size) then head back to the truck, talking to runners as I get ready for running errands and chores.

All in all I ended up vacuuming the house and mowing grass that day as well.  Needless to say I slept very well that night.

This is most likely my last half marathon.  I feel blessed to have been able to finish it at all.  I know that my ALS is still in the early stages but it did have an effect on me.  I know that had I been 100% I could have broken the 2 hour mark for this race (or maybe the next one), but I guess that was not in the cards.

No worries...I have still done something not many people have ever done and that was compete in and finish (reasonably well I might add) in two half marathons...both when I was 49 and at least one of them while experiencing ALS symptoms in my ankle.

Go me!

So Far, So Good and How Do You Really Feel?

As previously mentioned I was cleared to start taking Riluzole to slow down the progression of my ALS.  While at this point I have only taken 2 doses, I have not experienced the side effects that I was fearing I would have, namely the nausea and drowsiness.  Since Riluzole has to be taken on a empty stomach, I was concerned I would be tossing my cookies the first day but I did not experience any nausea at all with either dose.  I am currently taking it at 5:30 and 17:30 each day which works well enough for me.  I'll admit that waiting for dinner an extra hour sucks but it is only an hour and maybe I can be productive in some ways during that time.

Most of the time I do not read the drug info that is available online but with Riluzole I did.  In the US it is only used officially for ALS but the wiki page indicates it has been shown to have antidepressant properties as well.  The wiki also states that it has been shown to show promise in treating (not curing) Alzheimer's Disease.

It will be interesting to see I gain any benefits  from the anti-depression properties of this drug.  While I am not suicidal by any means, I have had a couple of "dark days" since I have been diagnosed and anything that would limit those would be welcomed.  Nobody enjoys being in a funk.

I have been asked how I feel about the whole ALS/mortality thing and to be honest I think I am dealing with it pretty well.  I am sure many people who have been diagnosed initially panicked and later became depressed or withdrawn and I understand that.  I have been accused (and maybe rightfully so) of being a worrier but I think that over the years I have mellowed a bit.  Maybe it is all the time (17+ years) I have spent in I/T...God knows that will either make or break a person.

When I was told I had ALS, I did not panic and I think I was more numb about it than anything else.  I know that talking about it helps.  Some people prefer to keep it private and I completely understand that but I am bit different.  I want to prepare people for what will happen.  I am not a huge fan of surprises which is why I have read as much as I can on this disease.  My biggest complaint (other than the fact that I have something that has no cure) is that I do not know how long I have left.  There are so many things I would like to see, so many places I would like to go, and so many people I would like to see again but I have no idea when the final buzzer will sound.

Well, all this has given me some desire to hunt down a few people I have not talked to in a while.  I think I will look online for them!

Blue? Gray.

The last time I made a blog entry I was feeling a bit blue. I don't feel quite as isolated as I did earlier on but I still have a lot on my mind. Work and all that it encompasses is the primary but also is the fact I am not much into the commercial / festive side of Christmas. We don't decorate and attend very few holiday gatherings. I guess the biggest part of that is my fault. As the head of the house hold I am supposed to be the leader but I just have not been able to get in "the holiday mood" the past few years. I guess it would help if we were not empty nesters or if we traveled to see family during the holiday, but some things just cannot be changed.

I have no problems with the spiritual side of the season. My faith is strong and I do a lot of reflecting during the seasons of Christ's birth and death. I guess I just see the rampant commercialism of Christmas and feel betrayed. Everything is geared for the secular side and it robs me of some of the joy this season offers. I guess if I could separate the two and scale the holiday back some I would fare better but I seem to have trouble doing that.

My weight has been slowly dropping each week. I have been dieting for almost a month and have lost eight pounds. I recently cut my caloric intake from 2200 to less than 1600 per day in an effort to loss some fat. My goal is to be at 175 pounds by end of February.

I have not really increased my exercise level much since the weather has not been cooperative and that has kept me from doing any hiking in the local WMA (wildlife management areas) or even taking extended local walks. That has really put a crimp in my geocaching time. I have about three more weekends of geocaching left to do this year and I still hope to reach 1000 by years end.

A new wrinkle has surfaced at work. It seems that my employer has decided to start providing and paying for cell phone and usage. For the past 4 years, we have provided our own phones and service and the company reimbursed us. Now the switch is interesting because back when we were hired, we were issued cell phones to use, paid for by the company. The issued the phones and they paid the service...we never saw a bill. Then one year after hire, that policy stopped and we were told to fend for ourselves but the company would reimburse us for any work iusage. Since I was getting on call pay (5%) I never bothered with getting reimbursement for my mobile phone usage. However, they stopped paying on call back in April and I have started submitting an expense report for part of it. But that is going to change, yet again. Sigh.

Now to add to THAT, I am on a call now and the guy whom I am speaking to is telling me that on call is going away all together. That would make my personal life a lot more livable but that throws a whole new set of issues that I need to chew on before I blog about them. Double sigh.

The Agony Of It All

I am miserable. I have been suffering with some of the worst allergy/sinus issues of my adult life. My head is so stuffed that breathing through my nose is almost impossible. I am sneezing and today my eyes finally started to itch...

I have taken Claratin, Sudaphed, Tylenol Sinus, and Zyrtek...nothing gives me much relief. I have an appointment with the doctor at 8:50 AM to see if it is just allergies or if there is something else wrong. My chest was a little "rattley" a couple of days ago but it feels better now.

I have been fighting with allergies my whole life. When I was a kid I was miserable. As an adult they got better (I could afford better drugs) but over the years they have gotten worse. I have tried one prescription med that has helped, Xyzol. It works but it is kinda pricey. However if I don't get relief soon, I will be willing to take out a loan for it if needed.