LUCK

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.

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.

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.

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.

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.

$$$$$

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 ;)

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: http://main.nationalmssociety.org/goto/jamie.smith

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....

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

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.

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.

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.