Monday, January 16, 2012

Still Alive

It has been a very long time since I wrote anything to this blog. I have been venting some on Facebook which I have since realized is not the best place to do it.

A lot have things have changed in the past year, but many things have stayed the same. First and foremost, I am still searching for a new identity and a new source of income. My income remains the same, yet the cost of my healthcare goes up. I have sold off just about as much as I can, done a few little $50 here and there jobs, but I am barely scraping by. What is worse is that I still have to encounter my old life and the affluence I had, but did not realize and took for granted.

I sit around trying to think of something to make my life worthwhile now and I just can't seem to think of anything. My best idea so far is to go back to my old life, but that would be taking a very large chance and I am not sure I can handle it, physically or mentally. I know that I am stronger now than I was just 2 years ago, but it is a huge chance to take with my disability money as well as my LTD income. At this point, I have no real backup income, no family inheritance to look forward to, no one to come to my rescue... but I do have knowledge, skills and experience.... sucks to waste it as I am now, I even have a little website where I work with another MS related friend, Terry.... to make money, albeit very little to this point.

What I need is a really good idea for something to create... but I have realized that every idea that I have come with are not so groundbreaking and even those are far and few....

And here I am sitting and thinking of what will be my new identity..... these are things to think about constantly...

Wednesday, July 21, 2010

Everything is normal (for me that is)

So, since the last post which I used voice recognition for was a failure. Not only was it nearly unreadable, it scared my family when they read it. After I completed the blog entry, I went for a drive at around 4am to clear my head. I was so upset and needed to get away from where I was at so I could think.

Well to make a long story short, I was out in areas with no cell phone reception and when my wife got up, she got really worried and couldn't get a hold of me... so she called the police to look for me. I found that out when I was back in range and told her that I would be home by noon. I got home at 11am to meet the police. They wanted to know if I was suicidal. I said no and that if I was, the 3 ton truck I was driving around would have given me ample chance. Anyway, I sat down with them for a few minutes, removed the knife I wear on my belt. We talked about where I used to live (happy hollow rd) and how it is where one of the cops live now. We talked about the legends in that area and so forth. The police were completely at ease knowing that even though I had not slept for a couple days, I was lucid.

The told me that my wife wanted me to go get checked out at the hospital. So I went. They could find NOTHING wrong, but my wife was insistent on getting me into A hospital for a day or two to adjust my meds... no one would take me because there was nothing wrong! Anyway, they did find a place for me after all. So, I checked into a "loony bin". It sucked and they did not know anything about my MS meds and they were not in their "drug choice list... so they substituted what they had and kept me up until 3am that first day so they could get all the meds together that I needed. Then woke me up by drawing blood from the palm of my hand. That was 5am. Two hours of sleep... wow. So the place really SUCKED. I can go on and on about what was wrong there and how they treated people. But I don't have the energy to explain all of that experience... maybe later.

Again, readers digest version, I got out and then got into my neurologist even though I had appt the day before that I missed because I was still "locked up". It was my neurologist's day off, but he came in to see me anyway. He was either VERY dedicated or he had something important to tell me.

I had an MRI the week before and he needed to show me the results. Basically, they found a mass on my pituitary gland! He sent me to KU to get another, more detailed MRI and then to a neurosurgeon there. I am a MU guy, but they told me that KU med was the best in the area. A little hint, they SUCK as well... damn my luck. I finally got in to see the neurosurgeon and they had several people look at it and they decided that I should just come back in 6 months to follow it. But, they were setting up an "emergency" appointment with an endocrinologist... well it is a month and huge medical bill later and the "emergency" appointment wasn't such an emergency since I have not heard back from them, even after leaving messages.

We decided to get a second opinion and asked around about who is the best endocrinologist and neurosurgeon in the area. Since my wife is a medical provider (DNP,FNP) herself, she got the real information about who to go to. So WE made appointments at both.

The endocrinologist was first and he looked at my labs and noticed the mass, or whatever it is, is impeding testosterone secretion. He ordered a repeat of the labs to see if it has changed in the past few weeks. I then went to the neurosurgeon and he thought that at the bare minimum we needed a biopsy of the mass. So, all the tests have now come back and I got copies of all the medical reports (you ALWAYS keep copies of your own medical records... they are YOURS) and I saw what the endocrinologist said about the mass. He thought there was a decent possibility of it being cancerous (the real cancer, not a benign cyst or something).

So, here is the situation now. Since I take Tysabri, which is a dangerous infusion to say the least, the neurologist, endocrinologist, PCP (primary care provider) and neurosurgeon agree on the course of action: I start on high dose steroids, hoping that they will shrink the mass although steroids are a dangerous addition to the tysabri. Use testosterone creme to help raise my testosterone levels, since that will help prepare me for surgery. The surgery is the second week of August which puts me nearly 8 weeks off of the Tysabri (once a month infusion).

The conclusion to all of this is that I hope that it IS something that NEEDED to be removed or fixed and it is NOT malignant brain cancer. So everything would be okay since I took care of it so quickly. I have a small advantage that I get MRI's every year, so it was spotted fairly early. But, I am obviously worried especially when I saw it in my medical records... but, I am also pissed. First, it could be because of the tysabri since last year's MRI showed nothing and in a matter of less than a year, I got a 12mm growth and STARTED taking tysabri... We will have to see about that. Second thing I am pissed about is that KU dropped the ball and did not diagnose, but just pushed it back another 6 months instead and could not figure out how to set up an appointment for me... If they truly missed this because of incompetence, I am going to look into a lawsuit. This is way too important of stuff (my brain) to be just casting it aside. This is the one that really pisses me off. And, I hope that all ends fine for me, but is was bad enough that it deserves a lawsuit.

Not only am I really worried, drugged up, and in pain a lot, I am REALLY PISSED.

Saturday, May 15, 2010

Just late night with no one to talk to...

Sub this is my voice recognition program and I suck at it. So I've spent more time correcting what I have said then speaking. But I guess it should say that my computer is worse at it than I am. But I still have my hands on the keyboad knowing all the mistakes aren't going to make speaking since I've had a few Sailors and coke

Is so I was looking at the pictures that go cross my TV screen it is the all the pictures that I have taken with a digital camera are in one folder debts rotates over my TV screen when the TVs on and not in use. Or so it had a little draw that it hasn't had in the past, hence the drinking, It is funny how you notice things that you should would have noticed before. My wife gets enthralled by the TV screen my mother gets enthralled by the TV screen all three of my daughters get enthralled by the TV screen and I noticed as much as it took to install it and design it that way. Sucks to be me. I am pretty much an idiot most of the time.

And this is my first true voice recognition blog. I apologize to 4 miswording vs misspelling. But that phrase has taken me 10 to plus attempts still getting it wrong so backspace and delete and im so impressed it got backspace and delete correct.

The pictures that I saw and I haven't seen in a very long time and now I understand why my wife, mother, and children become fixated on the TV when this is running. In this class ad to see those years and not be able to remember much of them myself. I will leave it at that so as to not cry.

I saw a new movie well it is not new but is more than a decade old but is the only movie that I know of that is about multiple sclerosis oh my god its belt multiple sclerosis correctly. But it is a movie named quote go now unquote. It was not released in the United States so I had to buy it as APAL copy and convert it to the NT SC format that the United States uses were used to use. Regardless my computer to read a pal copy. I read it ripped it and played it back through my TV that is currently playing pictures of my children. It was almost unbearable to watch. Only those that have an illness that's manifests itself like multiple sclerosis would know.

Unfortunately I noticed that my title says multiple sclerosis chiefs Ms. Zhu oracle. Unfortunately I do not too much oracle anything being disabled like I am. And everything seems revolve around multiple sclerosis. Looking at for my eyes it seems logical and predictable but to my eyes also if a clean socks. Sound that last phrase out and figure out what I said.

So long to my late night. I will see if I can find something else to do more somewher else to wither. You may notice some words are not reasonable but that's what makes this blocg interesting is to try to figure it out.

Monday, April 5, 2010

Still Here

I thought if I got some voice recognition software, I would blog more. I have simply been "down" for a while and haven't had the ability to do the blogging. Then it got to be too much information to talk about. So, I guess I will just start from now.

I currently have a bunch of staples in my left ankle from my 3rd left ankle surgery. This time they just took out all the hardware they had put in a few years back after the spiral fracture of my lower left leg.

Still down and it is amazing that I am typing now. I think I am just avoiding some of the stuff I have agreed to do for people. Sometimes I bite off more than I can chew. I am paying for it now.

Tuesday, November 10, 2009


So, I am sitting in hospital right now getting my infusion of Tysabri and thinking about things. I have not been adding much to this blog. I have been more scared to write about anything and having problems putting it into words. I think I will see about getting some voice recognition software to make this easier.

I went to my friend's 40th birthday party this past weekend and saw several friends that I have not seen in nearly 20 years. It was very nice to see them, but is was a bit of a double edged sword. They were a bit confused by the cane I was using to get around. It was my old one since I LOST my new one! Anyway, once they found out why, I got a lot of pity and a lot of advice as to what I should do. Things like how I should just "suck it up" or "enjoy the time off work" or how it was such bad luck.

The double-edged part comes with the fact that I got to see my friends and how well they "appeared" to be doing. But, hearing about their jobs, their homes and new toys was pretty much a slap in my face. I was pretty upset about it. I actually drove the 3 1/2 hours home (leaving at 2:30am) afterwards. I had drank very little since there is an interaction with my meds, so I was safe to drive and I generally go to bed very late anyway. I made it home fine.

The word "LUCK" has come up quite often lately. It has been mention that it was just bad luck that I ended up with MS and that I should just power through it (???? what are they thinking). Or, it was bad luck that I got MS but it will get better eventually (???? ya, but what do I do in the mean time... the eventually part is very difficult and there is not a timer on it). And, other ignorant (dictionary meaning) remarks. A LOT of "Sorry's" and a lot of pity for me. I appreciate the concern, but concern is not a lot of help.

I have been thinking that my LUCK (bad) and the problems it has caused is really my responsibility. I am starting to think that it is really not fair for my wife and kids and how much better off they would be if they did not have my LUCK as a burden on them. Don't start thinking that I am trying to be a martyr or something, that is not the case. The problem is that I am having a hard time figuring out how to ease that burden on them... Suicide would make everything worse. Leaving them would probably be just as bad because of the guilt they would feel. I can try to make everything better as best I can. But, my best is not very good anymore. I just don't know.

Sorry, those are all the thoughts I have right now.

Tuesday, November 3, 2009

I am back

It has been a long time since I have written and there has been a lot of stuff going on with me including pain, depression and life. I really don't feel like writing bunches of stuff right now, but I thought I would at least chime in.

I have been having a lot of pain in my head and have been trying desperately to take care of it. I have been prescribed about every non-narcotic drug out there to try to take care of it, but they have not been working. This leaves the narcotic drugs like vicodin and percoset. They are highly addictive, so I am not a big fan, but when you hurt and nothing else seems to help, you are stuck with it. The thing that most people don't get is that when you are in pain, you want to take care of it right NOW.... I can't be given tylenol or advil and wait a half an hour (which seems like a lifetime) to see if it will help, when I know it won't. Sucks.

The headaches a lot like debilitating migraines that are very sudden, localized and unpredictable. Plus, I cannot take migraine medicine since it has negative interactions with my other meds.

Anyway, that is my time today.

Tuesday, July 14, 2009

Way too long and way too much

Well, I have been pretty much procrastinating and not adding to this blog due to the fact that there has been a lot of stuff going on. I will try to outline it:
1) Donations
2) New diagnosis
3) More disability fun
3a) Insurance
3b) Mood
4) Old friends
5) Summertime
6) Bartering
7) Mania
... I think I will stop here.

1) Donations: I have been building and donating computers for people. I finally gave some away and it is very fun, although, it is a bit nerve-racking. I give the computers to people, but then feel the need to teach as well. They really do not know how to use it and I just need to let it go, I guess. It is not in my nature, though.

2) My new neurologist finally figured out that Copaxone was no longer working for me. He came to the obvious conclusion that if you are progressing, hence disabled now, the the drug is no longer doing me any good. So, my diagnosis now is no longer relapsing-remitting multiple sclerosis, it is now secondary-progressive. Years ago a drug named Tysabri came out on the market and it was a once a month intravenous drug. I said that I would LOVE to take something once a month rather than every day even if it was an IV. Well, the drug was pulled from the market because people had died from taking it. I thought that was it then. I would have to take the painful daily shots forever. Well Tysabri came back out on the market when they figured out the cause. It seems that people were trying to take it in addition to their other shots and that was too much on the immune system. Well, that is now what I am taking. I have had one treatment already and I have another tomorrow.

3) Disability fun... no f-ing way.
3a) It seems like a cruel joke. My disability insurance company sends me what seems like a ream of paper forms a month to fill out and the same thing goes for my doctors' offices. Somehow a man with diagnosed memory issues is supposed to keep up on all the forms for me and everything that the doctors need, too. Talk about a cruel joke. Needless to say, this situation has not been working out so well and I have gotten into several heated discussions with those that control this escapade to inform them that it is generally not the greatest idea have someone with parkinsons carry the coffee... although they do think that I should remember every step and how for something that rival the tax code in level of complexity.
3b) On a more serious note, it is really hard to deal with not working. I am reminded that drawing a paycheck to not work is something that every white-trash bastard I have ever met sees as like winning the lottery. That is not me. I am used to working for my money and feel like crap if I don't. This type of thing is hanging over my head now, mentally. Everyone tries to reassure me that it is great to get paid for nothing, but that is just not in my nature. Plus, even with Social Security and disability insurance, I am still taking quite a hit in income. And, to top it off, I am not allowed to work legally and still retain my benefits. So, if I want to work a little harder to save up for a nice present for my wife or something, that is not allowed. In fact, get this, my disability insurance augments my income by taking the amount of money that the insurance covered me for and adjusting it so that they PLUS social security provide that amount. And, in another means of cruelty, they also take the reward that my children get, which is spelled out in Social Security rules as my children's not mine and the insurance company also takes that as part of it. So, basically, the more kids I have, the less money the insurance company has to pay me. Isn't that just nice. Oh, and NOW to the point I was trying to get to. I asked the insurance company if I could work part time delivering pizzas or something. The said SURE... I just needed to remember to send my pay stubs to them so they can deduct it out of what they pay me!!!! HUH??? I am not allowed to make extra money legally?? NO FRUSTRATION HERE!

4) So, I have been using facebook a little bit and low and behold a friend of mine who I have known since Kindergarden and roomed with in college and fell off the edge of the earth after that... over 15 years ago.... popped up on Facebook. Very cool.

5) It has been freaking hot around here... and it sucks for those of us who have multiple sclerosis around here.

6) I have rediscovered something that I am good at. Bartering. And, it has been booming since the economy is not doing so well. What I have been doing is trading computer work.. mainly building, cleaning and updating people's computers that do not work very well for them and they have been doing things that I cannot do anymore, like work outside when it is 90+ degrees out there. I have gotten a new wall built for computer repairs and what looks like a new patio going in for some computer work as well. But the coolest one is that a guy that is getting ready to be deployed to Afghanistan needed a laptop to communicate with his family while he is over there... and I came up with the BEST trade. He, being military, is used to having to shine the faucets and clean everything to a crazy level. So, what I need is my motorcycle detailed... there is a lot of chrome there to shine and nooks and crannies to clean out. For him that is just a normal-like thing, for me it is torture. A laptop is probably a bit much to pay for detailing a motorcycle that has always been garaged, but it is worth it to me to know that I helped out a soldier and his family as well.

7) Finally, I am tired of typing, but I have to mention that I am having a lot of problems sleeping. I have been doing an all-nighter about once a week these days. It is crazy and no one can seem to understand it. I have a bachelors degree in Psychology and that is even that is more knowledge than necessary to figure out what this is. It is mania and my doctors knew it was coming since I guess I am like this every summer.

Okay, I have written a small book and am tired of typing. Maybe next time I will go into what I am going to do with my time for the future.... To be continued.

Tuesday, May 19, 2009

A lot more stuff going on

Been way too long, but I have been incredibly busy (especially for someone who is disabled). I have a lot of things going on and a lot of people vying for my attention and help.

Funny thing. I went out to a coffee shop to talk to a guy I met who needed some help with database design… something that takes me about 30 minutes to do in his case. And when I was there, we were in a quiet corner with only one person around and that guy got up, introduced himself and told me all about how he needed my type of help, too. Looked almost like it was staged or something, but it was 2 different types of business and I am not sure why you would want to introduce someone, that you need help from, to someone else that could take up his time or pull him away…. Dunno. Kind of flattering, regardless. But, I seem to be running into a lot of people that would really like my help. Sucks that I really can’t work in a structured manner anymore.

I have been getting donations of computers lately and rebuilding them. I take the computers and give them to people that cannot afford them. It is pretty cool. But, the computer donations I have been getting have been 10 year old computers or more. They are hard to rebuild since even I have few parts for that age of computer. And, those computers will not be able to run newer applications, especially the notoriously huge footprint of Microsoft software.

It is fun to give them away, but I do run into those that think I am trying to scam them by asking for computer donations. I have been trading emails with someone who is convinced that I am a scammer! Funny since I have fought the scamming having reported it to the police/website administrators on multiple occasions.

Health-wise, I am doing okay. I am in a bit a manic phase right now. I staid up from this past Saturday morning until Sunday night. Monday, I was wiped out and went to bed at 8pm which I cannot remember ever having done since I was a kid. I am generally a midnight bed person.

Besides the manic stuff, I am having major weakness in my legs when I get up, really needing a cane, but relying on falling to let me know I cannot stand ;) I also have a lot of weekness in my leg arms and shakes in my hand. The shakes are really annoying when I am trying to build computers and such.

Well that is all I feel like talking about now. My saga is ongoing and not that interesting for most although very therapeutic for myself.

Sunday, April 19, 2009

MS Walk hangover morning

Wow... I am tired. Actually not as sore as you might think... maybe the sore part comes tomorrow. Today, my legs are so weak.

The walk went okay yesterday. It was cool, which was fine. But, it rained the whole walk... we were drenched. My eldest daughter went with me and she acted more tired than I (the important word here is "acted"). I cannot imagine here being more tired than I.

I guess the best part is the people that we got to meet (my whole family went in matching shirts, nonetheless). Oh, and I cannot forget the mountain of free crispy creme donuts.

Today, I have to go to church this morning (youngest is singing). We were planning on working in the yard today, but it is again raining... so I doubt that.

Friday, March 27, 2009


It seems that the disability is causing more issue than I originally thought. When it comes down to it, I have done everything I was "supposed to" in my life so far. I have 2 bachelor's degrees. I got married and had 3 daughters. I was offered a huge job in California during the DOT-COM boom. I even lasted through the DOT-COM bust. I moved back to be close to family and continued to work at the same level I was before.

Well, this all cost $$ to move the family a couple times and that added up. You would think that it would be easy if you make a decent amount of money. But, kids cost a LOT!

Anyway, the disability has caused my $$ influx to dissolve and now we are really tight and in debt just like everyone else now. It sucks.

If you happen to be a really rich individual and you have a lot of extra money just laying around, I have gone to the extreme as to add a DONATE button to the left ;)

Thursday, March 19, 2009

MS Walk

I am doing the MS walk this year. I found a group to sponsor me in the fact that they will match all donations with a total up to $5000. That means that your tax deductible donation will be matched! So you donate $100, the MS society gets $200 !!!!

Anyway, to donate, go to:

Status Quo

So, guess what... I broke something again. I had 5 (FIVE) breaks last year... working on beating it this year. The MS has a lot to do with it since my balance and my "spatial feel" is not good these days.

Anyway, it was a very minor one so no x-ray. Last year I got xrays on 2 out of 5 times. This first break of year is one of my toes on my "bionic leg" foot (left lower leg is intensely reinforced with titanium because of a major spiral fracture a couple years ago, so I call it bionic ;) ). The toe is nice and swollen and, according to my 5 year old daughter, is black, blue and purple. Hmm... I am partially colorblind, but where did the purple come from....

Sunday, March 15, 2009

Big 12 Champs

Wooo Hoooo!!! Was tire of Kansas taking it and the Kansas Fans rubbing in their Basketball team.

Mizzou Tigers Big 12 Basketball Tournament Champions 2008-2009

Thursday, February 26, 2009

Situation is collapsing

So, I am disabled. I have been trying to work on getting everything together to handle disability. I am cleaning out my office (big project), taking care of some honey-do list stuff, taking care of the computer network and computers in the house, doing the taxes, following up on all disability stuff (big project) and taking care of the kids while my wife works.

What I didn't expect was the broadside of relationships. Some people have a problem with the "disabled" status. And, these are people that I wouldn't have expected.

So, I am currently in a situation where my health is a major deal, but I also have to worry about my relationship to make sure it doesn't falter, and that is the most difficult one.

I am really in need of help. But, I am not sure where/how to get it. If there is actually anyone reading this, if you have any ideas, please pass them on.

Friday, February 6, 2009

Plugging along

I am now officially disabled. You would think that would make things much easier. But there is a mountain of paperwork for my disability insurance company as well as the Social Security administration!!

So, earlier this week I made a huge mistake in that I forgot to take my morning meds. My wife got home and started talking about all the things I needed to do for Social Security and more. If I have not mentioned it before, I have a very hard time dealing with more than one thing at a time. So, will the lack of meds and dealing several things at a time, I got really frustrated and threw a bit of a fit... once I calmed down, I realize that I don't normally do that anymore. So, I went and checked and low and behold, my morning meds were still in the box! Unfortunately, I have not gotten into a good routine yet.

I happened to speak with my inlaws a couple weeks ago and one of them expressed some serious problems with me and that they were going to snatch my wife and kids from me because I am such a problem, I guess. I should just shun that off like I did about the conversation we had when we first met and how I was useless and such (they did no know me at the time). Anyway, I have been having quite a few things happen recently, so the timing of that conversation was not good. I am having a hard time forgetting it.

Tuesday, January 27, 2009

Major Life Changes

Again, it has been a long time since I added to this blog. But, I have a lot of things that have changed recently.

A week or so ago, I was written up formally for some problems with my performance at work. This is the first time, ever, that I have been written up at work for anything. While the examples given were mostly bogus, the general ideas of the session were valid. I, honestly, knew these were issues but was denying that it actually was noticed. Denial is the keyword here.

What the meeting did do is point out that I was not coping as well as I thought. So, after a Dr. appointment and conversation with my family, I chose to finally go on disability. I knew this day was coming, but I just kept myself thinking that it would be several years in the future. My doctors (yes, plural) had already suggested that I do it, but I am someone that is used to working and did not have any desire to stop. I have worked since I was 11 years old, picking apples. I worked through high school and college and have been working ever since.

I am not sure what I am going to do now. Thank god I have plenty of paperwork and "honeydo list" stuff to do for now. I have no idea what I am going to do after all of that is taken care of. I have tried to think of stuff like doing a little work selling stuff on eBay, some volunteer work, maybe even teach at community college or something. I just don't know at this point.

In addition, I have a family and disability does not pay my same salary, so what are we going to do about money. Unfortunately, most of this responsibility will have to be passed on to my wife since disability restricts the amount of money you can make and still receive payment. The good thing is that I have paid for the maximum amount of disability insurance I can get through my employer my whole working life, even before I was diagnosed with multiple sclerosis.

What is "funny" about all of this is that since I stopped working, my symptoms have increased! I am not sure if I just didn't notice before or I am truly having an exacerbation. I am having a bigger problem with tremors in my hands and legs. My legs started doing major kicks from the hips last night that would not allow me to go to sleep. Well, I am not sure how anyone could sleep in the bed since I was kicking so hard that it was shaking th whole bed. Needless to say, I did not sleep well last night and my legs are tired this morning.

Okay, tired of typing now.

Friday, December 19, 2008

Post Vacation

So, I made it through vacation without losing any body parts! Ya, I am kind of surprised, too. In the past, I have lost things like my appendix, injured myself, etc...

I got a blu-ray player for my birthday... that is awesome! And, got some movies, too, but with Circuit City closing it's doors in my area, I have been investing a small fortune in discounted movies. Nothing else there seems to be anything but down to the prices that everyone else charges.

So, I have been getting a lot of interest in people trying to hire me out of my current position. I am somewhat courting it a bit now since I have been a little unhappy with the direction of my current position is going. I am not sure I will actually go, but it is kind of fun since I am really interviewing them as much as they are me. But, I don't want to get caught up into a situation where I am thinking a new company is going to provide the "little nest" I have built in my current position. They have been letting my work from home a lot lately to take away some of the stress and fatigue that is generated when I am in the office. I actually get a lot more work done at home than at work with all the distractions. So, I am not very sure what I am going to do. I like the place that I work, but just not the way it is being ran now in my area.

Friday, October 31, 2008

A lot going on

Again, I took a long time to add to my blog. I think that I don't really add to it until I have to get something off my chest.

Since my last blog message, I broke my right foot again! It is really one of the toes, but there really isn't anything to break in a foot than the toes. I don't generally call it a toe since I broke it half way between my heel and where the toe becomes an appendage... inside the foot. Anyway, you cannot cast it, so I just have to be nice to it. I started walking on a cane to help it out, but noticed within a couple weeks that I was putting to much stress on my left ankle (the titanium reinforced one). So I then had to switch my cane walking to now take stress off the left foot... ugh.

I have had some anger/depression issues again. One of my doctors adjusted the drugs I take (more than a dozen pills and a self administered shot every day) and that seems to have helped.

So, my issue now is how to cope with the MS fatigue and weakness, my ankles and feet that need physical therapy, memory issues, the need for exercise, taking care of my children (an attitude perfecting teenage daughter, an attitude developing daughter, and a wild and temperamental 5 year old daughter... all cute and all very good kids, but....) while my wife works 2 jobs and goes to school.... oh, by the way, I work full time!!

And, to make matters worse, we now have a dog that I absolutely hate. It is as dumb as a doorknob, yaps all the time, and cannot figure out where she is supposed to "go to the bathroom". From that description, anyone with any knowledge of dogs probably know about what type of dog I am speaking.

I did make some progress with my job in the fact I got them to agree to working 2 days in the office and 3 at home a week. It does wonders for my fatigue. But, I have also heard from my company that the price of my healthcare (which I cannot do without) is going up 30%...

So, the title "A lot going on" is very accurate.

Tuesday, September 16, 2008


So, I quit smoking a couple weeks ago and it sucks. I suddenly fell into a state of depression. It just seems that I am no one to everyone.

I pretty much sucks.

I have been trying to figure out what I can do to get over this, but I have found nothing that helps. No one to really talk to about it since everyone seems to be too busy.

On top of this, it seems that I have piles of stuff that I need to do, yet cannot make headway on anything. Money is always an issue. My wife seems to believe that everything is fine, but I don't see it that way since I am in the time of my life where I should be making money enough to catch up on all the debt, but I can't.

I have things to fix at home. I have things to fix at work. I have things to fix.... well, everywhere. I hate being run-down all the time. I hate having to veg out because I am too tired to do anything after work. Once the weekend comes around, I try to catch up as best that I can, but it never seems to be enough.

I wish I could do something that would take all this away, although if it did go away then I would have nothing to do, which would also be a problem.

So, it seems like a lose-lose situation to me. I cannot win, no matter how many caffeine pills I pop. And, once it seems like I might be able to, I go and do something like break my foot. (Actually a toe up inside the foot)

I pretty much snap at anything... fuse is really short. And, this is really bad for my family. My teenage daughter says that she is tired of hearing about Multiple Sclerosis... I know she is a teenager and shouldn't take much from it. But, that sucks, too.

So, basically, I am depressed with no end in sight. Maybe I should start smoking again.

Monday, August 25, 2008

Facebook, etc

This thing has been pretty cool. I have contacted people that I haven't spoken to in a decade or more, I am networking with people that I barely know, and it is a little bit of fun.

So, in the last post I spoke about my camera getting stolen. Well, we found the thief! It was my wife. It was hidden away in a bag that had been put away after our last weekend trip. So, it was not really stolen, just misplaced. LOL... I had even bought a new one to replace it... guess I need to hurry up and take it back!!

Well the first MIZZOU football game is this weekend!! So ready!! I love football. And, finally, the tigers are respectable. I am tired of Jayhawk fans. They cheer for their basketball team and all it's glory. It has been a powerhouse basketball team since the 50's. Of course the best players want to go there and of course they do well.

I don't think you are real fan unless you stick with your team through the bad times before you see the good times and you stay with them when it goes bad again. I really hate "bandwagon fans"... those that only root for winning teams and it changes from year to year. The jayhawk fans that I come in contact with talk like they are "entitled" to it or something... naw, root for a team where the goalposts are torn down after ANY win since they are so few and far between as I did with MIZZOU in the late 80's and early 90's. Hell, I was one of the people tearing them down. Then get to watch them start winning... those are the fans... not those that only know the team when they are winning.

The same goes for the Chiefs. They are going to suck this year. That is expected when more that half of the team have less than 2 seasons experience. They are rebuilding through the draft. Not a quick-fix-find-a-free-agent-to-fill-a-role rebuild, an old-school rebuilding. Creating a team that is used to working together. That is the way it should be done.

I guess that is all I have for today...

Fighting through pain + allergies right now, but that is boring.

Thursday, August 21, 2008


Not sure what to write about, but I haven't left any entries for a while.

My headaches are mostly gone. After 4 shots of steroids to the spine and an increase in meds (like I need more... I take about 16 pills and 1 shot a day right now), there are only a few break-through pain episodes now and they are all minor. Nothing like the ones that started this whole thing.

Maybe it is because the temperature around here is freakishly low for August. I am pretty sure that has something to do with it.

So, only news I have is that someone (teenagers from the neighborhood, I'm sure) broke into my truck and stole cigarettes and nice digital camera. Sucks. Don't have the money for a new camera. I have been looking around in the classifieds online and in the newspapers for the camera. It had family pictures still on it! I haven't found it yet.

So, I found facebook this month. I originally had not planned to use any sites like that, but many of my friends across the country use it and it is a way to keep in contact. It has been sort of nice, but takes up too much time. I have suddenly ran into people that I have not talked to in 20 years. No kidding. High School.

Oh well. That is all I have got for now. Nothing really good or bad going on.

Tuesday, July 22, 2008


So, I am back exactly 1 month after my last post... boy, I am really burning up the blogosphere (/sarcasm).

Heat has been the issue as of late. When it gets into the 80's and 90's and so forth, it is a pain in the ass. I get fatigued. I start having issues concentrating. I have issues with more random pains. Sometimes everything seems to close in and I cannot function correctly.

Oh, btw, I added a bunch more medicine to my current regimen, so the headaches are better. I also had several spinal steroid shots. The headaches are more manageable now, but are not gone. It is amazing what my pain tolerance is now. I laid in recovery for my spinal shot which I barely noticed, and listened to people moan and cry in pain from the same shot. The pain tolerance is nice, but the cause of it is no so nice.

I started smoking again. I shouldn't do it. But, when you have so many other things to deal with, it is hard to give it up. On top of that, I am not eating correctly. I generally skip everything but dinner... too busy, I guess. Another thing I need to get into the habit of doing.

Back to the heat. It is messing with my memory and my moods. Mainly making me depressed. Maybe not depressed in a clinical sense, but depressed nonetheless.

I have so many thing I need to do:
  • quit smoking
  • exercise every day
  • eat every meal in moderation
  • cut out my self medication (drinking)
  • get a sleeping habit together so I can fall asleep at night
  • get to work on time (hard to do)
  • stop drinking so much caffeine
  • fix this
  • fix that
  • upgrade this
  • upgrade that
  • build this
  • build that
  • etc
  • etc
  • etc
  • etc
  • etc
My list seems to be overwhelming to me. And, what is even harder is to remember it! Especially in the HEAT.


Sunday, June 22, 2008


I have been having some problems with pain for the past few weeks. The locations are random on my head. It feels like a mini-migraine and lasts for only a few minutes. It pretty much sucks. When they hit (no warning, just pain), I lose my train of thought and it is difficult to speak or anything. It does not take away any motor skills or anything, just moves all attention to the pain. Like I needed something else.

I have been taking hydrocodone and oxycodone to mask it, but it is still there, nonetheless. In the middle of all of this, my job has ramped up so I have a LOT of work to do in a very small amount of time. So much for trying to take it easy.

I had to leave in the middle to go to a wedding. The wedding was planned a year ago and it was on my schedule to leave since then. The work necessity came up about a week before and suddenly I was under pressure to work. They wanted me to work while I was at the wedding and make sure to keep up with my email, etc. No pressure.

I have been talking for months about getting some help with what I do since, currently, there is NO ONE else in the company that knows how to do it. Basically, if there is Oracle work, I have to do it. No problem. But there is a limitation with how much time there is in a day and the fact that I really do need to sleep.

On top of all of this, I am still making less money than I did in 2000, 2001, 2002, 2003, 2004, 2005, 2006 & 2007. I can say 2007 even though I was working for the same company because in the beginning of the year, I was working a second job. This year, all salaries were frozen, so no raise. Oh, they also changed insurance, so I now pay a considerable amount more in insurance. Insurance is absolutely necessary in my case. Copaxone is not cheap.

To give you an idea, I am now working a second job again. This is absolutely wrong. My doctors... plural... all say the same thing that I should be taking disability right now and not working at all. So, what am I doing, working 2 jobs. My wife is working 2 jobs AND going to school to get her PhD. Basically, in my house there are 4 college degrees and a fifth on the way.

Oh, 3 daughters, 2 dogs, vehicles, house, etc... If we had more money, we could pay for some help with the house cleaning and such. We did have someone helping, but she was sporadic on when she would show up and pricey.

The pain (changed subject, I know) puts me in a down mood. Way down since I am being hit with intense pain without warning... I just know that it is coming. It is sort of a torture almost. Right now it is occurring about every hour, sometime more, sometimes less.

If the MS didn't make you live a life feeling all alone all the time. Seems kinda stupid, but ask anyone else with MS and they will tell you exactly the same. You cannot live a normal, active life all the time. You have to make time to rest (and feel like you are being lazy). You have to stay away from heat. You have to take a cocktail of pill every morning and again every night. You have to inject yourself with a painful shot EVERY day. No one else close to you has to do this. They just watch and think of it as a normal thing or something. Sorry, it is not.

Tuesday, June 3, 2008


I have a lot to say, but not much time to do it. So here goes. I apologize if a lot of it does not make sense.

I am having what I think are MS exacerbations or symptoms now. I have been having these mini-migraine headaches. Basically, I have a headache only in a small area of my head, like the side above the ear. It is pretty painful, but only last 5-15 minutes. The next one will be in a completely different spot on my head. Can't really take anything for it since I don't know it is coming and the medicine would not take effect until after it has gone away. Sucks!!!

My company changed insurance at the beginning of the year. It hurts. I take copaxone everyday and it is a very expensive regime. The price of it doubled. Plus I am supposed to go through a step routine for the medicines so I can take the medicines that I have been taking for years. Fortunately for me, my doctor is the same and he is taking care of those issues for me since it took me several grueling years to get to where I am at now. Also, the insurance won't cover things like Chantix and several other medicines now, so I have to pay out of pocket for them. Sucks!!!

BTW, I have be doing incredibly well at my job, going above and beyond and producing. How do they repay me for it?? Change insurance, causing more expenses.... and freeze all raises. Oh, in my household there are 4 college degrees... me=2, wife=2, but working on number 3 right now. College costs... debts cost.... medicine costs... kids cost....Sucks!!! I am now looking to work a second job. I am in pretty high demand, if I want to be, but I am not sure that my health can handle it. But, I want to live life without having the stress of life. ;)

Oh, I am so good at what I do, that the company is using my technology suggestions leaving me as the implementer of everything... but not allowing me another employee to help me out with the workload. The people that I work with are 95% microsoft based stuff. So, there is no one with the skills to cross over and I am not given the time to train anyone. The people with Microsoft skills tend to be IDE addicted and do not know the basis of anything underneath. Makes it hard for them to crossover since there are very few IDE's for what I do. I am a writer of code in a text editor. Old School. Sucks!!!

I have to do something about my weight now, too. I have been trying to slow down lately so I feel better. I take naps sometimes now.... it is getting hot outside (I can't handle that very well)... so I have been increasingly inactive. My weight has shot up. The only thing that I can willing do, it seems, is just to stop eating. I am now only eating 1 meal a day. It is not healthy and I know it. It is not working since my body just goes into starvation-mode and I don't lose anything but muscle. But, what do you do when you have MS and trying to lose weight.... Sucks!!!