Dwight's Life

DMDer, the healthy one?

2010-08-18T19:25:00.000-04:00

I just realized it was a year ago today that I last posted to this blog and nearly 2 years since I posted any original content. I think it is about time I started sharing again. A lot has happened since I last blogged from a change in nursing agencies to my starting classes through Liberty University online.

I have not had too many health changes in the last two years although there have been some. I now cannot eat much more than puréed foods. The foods I can eat without puréeing are soft foods like ice cream and cakes and other things. This is probably the biggest change.

Recently I have started to have edema/swelling in my left foot which given my weaker heart is obviously a concern. I had the same problem but not as severely about a year ago which was resolved by a change in blood pressure medication. Over the past several months I have had a little bit of dependent edema after sitting in my chair all day but it would go away by morning. Then about a month ago I had a lot of edema one night and it took at least a week to go away and even then it never completely left. And now I am writing this blog entry from my bed so I can have my feet elevated since a few hours after I got in my chair for the day my foot swelled up to the point where it was uncomfortable and my leg braces. I have an appointment with my cardiologist on Tuesday but will see if I can get in any earlier.

The biggest health changes going on are not even mine. Both of my parents have recently had their own problems. My mother recently had to have a pacemaker/defibrillator implanted. She couldn't breathe one morning and went to the emergency room. To make a long story short they found out she has a low ejection fraction of 15 which is extremely low (I have a low ejection fraction of 19).

After some investigating and a $8000 genetic blood workup come to find out the reason she is having these problems is from being a carrier of Duchenne Muscular Dystrophy. It is extremely rare but it can happen where the carrier will have the same or at least a similar deficiency in the production of the protein dystrophin as the person who actually has the disease.

Then this month my father was complaining about dizziness and just didn't feel right. So he went to the hospital and they discovered he had about four spots of blockage in his arteries. So they put in 2 long stints to correct the problem and he feels 100% better and seems to have more energy (not sure if that is a good thing or a bad thing :-)).

Who would have thought the one with muscular dystrophy and on a ventilator would be the healthy one in the family. I wish my returning blog post would have been a little lighter in content but such is life at times. The good news is all of this has happened with God and our lives. I honestly don't know how we would handle it otherwise. I hope to start blogging more regularly in the future. Stay tuned.

Sanctus Real: Something Heavenly

2009-08-18T18:59:00.001-04:00

"Keating Economics: the Making of a Financial Crisis"

2008-10-06T15:50:00.001-04:00

"Keating Economics: the Making of a Financial Crisis" is a documentary that shows why John McCain's failed philosophy and poor judgment are a recipe for deepening the economic crisis.

Proverbs 25

2008-08-29T17:55:00.000-04:00

Today I chose Proverbs 25:28 which reads: "Like a city whose walls are broken down is a man who lacks self-control." When I think of someone with a lack of self-control I think of a person with poor boundaries. A person with a lack of self-control would be quick to let something or someone bother them and in turn be quick to lash out in response. If you were to look at a person's boundaries as a wall around a city the wall would keep people or at least irritations out. If there are no walls/boundaries how easy is it for people to barge in.

Proverbs 24

2008-08-28T17:15:00.001-04:00

Today I chose Proverbs 24:10 which reads: "If you falter in times of trouble, how small is your strength!" I think this goes beyond the obvious statement of being weak if you falter in times of trouble. It is easy to feel confident and secure when times are bad but the real test is one bad times come. This can also be applied to times when we are being tested by the devil or tempted. Shows how important it is to continue to read the word even if we are doing fine spiritual. If we don't have any thing to fall back on to help us we will succumb to the temptation more easily.

Proverbs 23

2008-08-27T19:41:00.000-04:00

Today I chose Proverbs 23:15-16 which reads: "My son, if your heart is wise, then my heart will be glad; my inmost being will rejoice when your lips speak what is right." Wisdom is not only good for us, it not only keeps us out of trouble, it not only brings us closer to God, it also makes God glad and rejoice.

Proverbs 22

2008-08-26T17:48:00.003-04:00

As you can see, I have fallen behind (way behind) on doing my one proverb a day. Rather than just saying forget it I will simply pick up today where I left off. Today I chose Proverbs 22:3 which reads: "A prudent man sees danger and takes refuge, but the simple keep going and suffer for it." This reminds me of another expression or question. What is the definition of insanity? Doing the same thing over and over again expecting to get different results. While this is probably not exactly what is meant here it is very close. We have all heard people ask the question "Why does this keep happening to me?". If you were to look close enough you would probably find that they are doing a particular action that results in the troubles. For example, I have had many female friends who get into relationships that are doomed to fail. I am not saying this is just women or all women but the friends I am referring to have been women. They meet a guy who ignores them and does not give them time and complain about it rather than moving on to find someone who does treat them well. They will go after guy after guy who does the exact same thing. Yet others will continue to go back to the same person over and over and expecting different results each time. I guess this came to mind since I recently had a conversation with one of these friends about to do the same thing with the same person for the third time. Just in case anyone would read this and think of me nuts for making that connection to this scripture.

Proverbs 21

2008-08-12T21:54:00.000-04:00

Today I chose Proverbs 21:23 which reads: "He who guards his mouth and his tongue keeps himself from calamity." I like this one because I cannot count the number of times I have either put my foot in my mouth or said something I wish I could take back. I was thinking before I spoke or guarding my tongue.

Proverbs 20

2008-08-11T21:39:00.001-04:00

Today I chose Proverbs 20:1 which reads: "Wine is a mocker and beer a brawler; whoever is led astray by them is not wise." Only thing I can say is this question. How many times do you know of that someone made a really good decision after they have been drinking?

Proverbs 19

2008-08-10T18:14:00.000-04:00

Today I chose Proverbs 19:19 which reads: "A hot-tempered man must pay the penalty; if you rescue him, you will have to do it again." I'm sure anyone reading this knows someone who is constantly making the same mistake. Over and over and over. Be it an addiction, spending money, or just poor decision-making. Some people make a mistake and you help them and they go on their way. Other people you bail out once and they keep coming back to be bailed out for the same things.

Proverbs 18

2008-08-09T17:54:00.000-04:00

Today I chose Proverbs 18:11 which reads: "The wealth of the rich is their fortified city; they imagine it an unscalable wall." This verse is not saying that wealth is secure. It is saying exactly the opposite. The rich imagine what that their wealth will make them secure. Real security comes from God and from within and not from material things.

Proverbs 17

2008-08-08T00:03:00.000-04:00

Today I chose Proverbs 17:22 which reads: "A cheerful heart is good medicine, part a crushed spirit dries up the bones." You ever wonder why two people with the exact same condition can have completely different outcomes? One person will die quickly and the other will actually recover or at least live much longer than the first. All other things being equal it has a lot to do with attitude. A negative attitude and you will see everything as a disaster and lose hope. A positive attitude and you see hope. I personally believe that a positive attitude is why I am still alive and kicking while so many others with my condition die younger. Don't get me wrong, I do not mean to say or imply they didn't live this long simply because they were negative. There are a lot more factors that go into something like that. But the positive attitude is very helpful and can add years to your life.

Proverbs 16

2008-08-07T23:48:00.000-04:00

Today I chose Proverbs 16:9 which reads: "In his heart a man plans his course, but the Lord determines his steps." We as humans can make what ever plans we like but ultimately it is God who determines what actually happens. I always like to say if you want to make God laugh tell him your plans. We like to plan as if we are in complete control but that is impossible or at least an illusion.

Proverbs 15

2008-08-06T18:21:00.000-04:00

Today I chose Proverbs 15:1 which reads: "A gentle answer turns away wrath, but a harsh word stirs up anger." If you approach someone angrily how do you think they will respond? Angrily in return. If someone comes to you angry and you stay calm and gentle and loving chances are they will calm down. Not a guaranteed of course. You will definitely get better results returning kindness.

Proverbs 14

2008-08-05T00:34:00.001-04:00

Today I chose Proverbs 14:29 which reads: "A patient man has great understanding, but a quick-tempered man displays folly." I think the reason a patient man has great understanding is because he allows himself the time to gain understanding. Someone who is impatient is going to try to find shortcuts. He might get there but it is going to take at least twice as long. Also, someone who is quick with their tongue and temper usually looks very foolish. They are quick to judge and criticize which leads to them jumping to conclusions only to be corrected later. Looking foolish.

Proverbs 13

2008-08-04T00:17:00.000-04:00

Today I chose Proverbs 13:20 which reads: "He who walks with the wise grows wise, but a companion of fools suffers harm." If you want to be wise you should seek out people to be around who are wise. If you are looking for advice on a topic you look for someone who is an expert on that topic. If you were looking for advice on how to run a business would you ask someone who never has run a business or worse yet run one in the ground? Of course not. You wouldn't ask someone who runs or has run a successful business.

I am not in control

2008-08-03T17:37:00.001-04:00

Today on the way back from church we were discussing whether or not to go to the night of worship at the CityPlace campus at 7 p.m.. We get home and tried to open the back doors of the van to let the lift down so I could get out. The door refused to open. A few months ago someone had tampered with the lock for that door but it would still open. Then about a month after that it would only open from the inside. So my father had to carry me from the van into the house and then lift the chair onto the ground. So needless to say any plans we had made were mute. Further evidence that I am not in control, God is.

Proverbs 12

2008-08-03T17:19:00.001-04:00

Today I chose Proverbs 12:16 which reads: "A fool shows his annoyance at once, but a prudent man overlooks an insult." I can remember several instances in my life when I had quickly taken offense to a comment someone has made causing me to respond inappropriately only to find out I had misunderstood them or their intentions. If I would have stayed calm and asked them to clarify I would have avoided embarrassment.

Proverbs 11

2008-08-02T17:03:00.001-04:00

Today I chose Proverbs 11:25 which reads: "A generous man will prosper; he who refreshes others will himself be refreshed." I guess another way of stating this would be you have to give to receive. Self-help gurus have been saying this for the past several years thinking they are saying something new or unique. I find that most things they say can be found in the Bible. God will take care of or reward if you will those who learn generous and take care of others. This is not to say we should be stupid and give away money that we don't have to give away or that we need to provide our own basic needs. But if we have faith God will take care of everything.

Proverbs 10

2008-08-01T23:59:00.000-04:00

Today I chose Proverbs 10:12 which reads: "Hatred stirs up dissension, but love covers over all wrongs." Have you ever seen someone who is hateful tried to get things done or have interactions with people? More times than not an argument is what happens. On the other hand, have you ever seen someone who is loving handle adversity or someone who is angry? Most times the love will overtake the hatred and anger and the angry or irritated person will become calm. Any parent can probably think of times when the love they have for their children has allowed them to overlook or forgive even the worst offenses of their children. This is the same love God has for us.

Proverbs 9

2008-07-31T16:19:00.000-04:00

Today I chose Proverbs 9:8 which reads: "Do not rebuke a mocker or he will hate you; rebuke a wise man and he will love you." Have you ever tried to inform or correct someone and have them argue with you no matter how wrong they were? If you have ever had to deal with a teenager I am sure you know what I mean. This speaks to the first part of this verse. When someone is truly interested in the truth or having the right information you get a completely different response. They either say they never thought of it that way or thank you for your input. They appreciate it. This speaks to the second part of this verse.

Proverbs 8

2008-07-30T16:07:00.000-04:00

Today I chose Proverbs 8:18 which reads: "With me are riches and honor, enduring wealth and prosperity." This chapter depicts wisdom as someone or something speaking to mankind. Encouraging mankind to seek wisdom. If you think of the great leaders of the past or the great inventors of the past they all have one thing in common. They were wise. This is not to say that someone without a formal education could not do great things. They can but they need to have wisdom. So basically this scripture is promising us that when we find wisdom we will also find riches, honor, enduring wealth, and prosperity.

Proverbs 7

2008-07-29T15:43:00.000-04:00

Today I chose Proverbs 7:21 which reads: "With persuasive words she led him astray; she seduced him with her smooth talk." This chapter of Proverbs tells a story of a young man with a wisdom who is seduced by an adulterous woman. But I think this goes even deeper than that. When we think of times when we were tempted and led astray to do something we know we shouldn't (and I'm not just talking sex) but it was presented in a very attractive or seductive manner. It can be the words of someone else for it can be our own self talk convincing us. We can see many things on TV that are seductive and using sex to sell things. If we are constantly bombarded by these things it can wear down our resistance. This is why we must be wise in what we view and listen to.

Proverbs 6

2008-07-28T16:21:00.000-04:00

Today I chose Proverbs 6:23 which reads: "For these commands are a lamp, this teaching is a light, and the corrections of discipline are the way to life," While the context of this is when it comes to avoiding immorality and adultery, this one statement applies to all of God's teachings. What does a light do? It illuminates and can light the way on your path. So by following God's commands and discipline we find the way to life. Not just for life after we die but a fuller life as we live.

Proverbs 5

2008-07-27T16:00:00.001-04:00

Today I chose Proverbs 5:21 which reads:

"For a man's ways are in full view of the Lord, and he examines all his paths."

Basically, God is watching so act accordingly. Before you do something ask yourself if this action I am about to take brings honor to God. This chapter of Proverbs is dealing mostly with adultery. I don't know the statistics to give you an exact number but both pornography and extramarital affairs are at all-time highs. To the point where it is breaking up marriages. How wise the Proverbs were about avoiding adultery.

I Want To Believe

2008-07-26T15:49:00.000-04:00

Today I went to the movies to see The X-Files: I Want To Believe. It was a great movie for any diehard X-Files fan. Everyone I have spoken to who is a fan enjoyed the movie but everyone else thought it was mediocre. I know how us fans hate spoilers so I will not give any. I would call this movie the goodb we never got. If you are an X-Files fan I would definitely go see this movie. I want so bad to discuss some of the things but I will wait until it is no longer in theaters so others can get the same enjoyment I got from the movie.

Proverbs 4

2008-07-26T09:46:00.000-04:00

Today I chose Proverbs 4:14-15 which reads: "Do not set foot on the path of the wicked or walk in the way of evil men. Avoid it, do not travel on it; turn from it and go on your way." Some people think it is okay to get close to evil or skirt the edge. An example would be what we watch on television. If you watch nothing but violent programming you become numb to it and it becomes a normal thing. If you watch nothing but sexual or sensual programming eventually you will want to do the same things they are doing on the screen. The and of verse above says "turn from it and go on your way." Good advice. Being in the presence of evil or sin eventually brings us down to that level.

Proverbs 3

2008-07-25T14:58:00.000-04:00

Today I chose Proverbs 3:19 which reads: "By wisdom the Lord laid the earth's foundations, by understanding he set the heavens in place;" I have recently been watching shows on the history Channel and Discovery Channel all about the earth, the planets and the universe. The more I watched the more amazed I am by God's creations. Our planet is in the perfect spot. Any bit closer to the sun and we would burn up. And a bit further away from the sun we would freeze to death. I do not know how a person can look at that fact and at the grandeur of the universe and say it all happened by accident with a big bang. Don't get me wrong the Big Bang could have happened with God's hand directing things. Any other planet in our galaxy would not be suitable for our life.

Proverbs 2

2008-07-24T16:45:00.000-04:00

Today I chose Proverbs 2:10 which reads: "For wisdom will enter your heart, and knowledge will be pleasant to your soul." Not much I can say on this one. The verses leading up to this one are talking about looking for wisdom and knowledge and the fact that if we do this God will give it to you. I have found in my own personal experience that the more I learn the more I enjoy learning. This is true of my learning of a God and of my learning about things that interest me like history and electronics and how things work. If we study God's word enough we will start to act from the heart but in a wise way. Finding the truth about the matter becomes a pleasant task.

Proverbs 1

2008-07-23T20:15:00.000-04:00

Three Sundays ago the pastor at our church gave us each the assignment of reading one chapter of Proverbs a day. After each reading we were to take one verse that spoke to us and look at it several times that day. I am behind...No, I have not even started. Better late than never so I thought I would do this assignment starting today and post my picks on the blog with a brief explanation of what I got out of that day's verse. So here goes with Proverbs 1. I chose Proverbs 1:7 which reads: "The fear of the LORD is the beginning of knowledge, but fools despise wisdom and discipline." I know most people may read fear to mean to be afraid of God but usually the word fear in the Bible has more of a meaning of awe and reverence. So to be truly wise when it comes to spiritual knowledge you must first start with respect for God. In the context of the Bible wisdom is defined as discovering and applying God's truth to our lives. Even if we are not talking about the Bible I am sure we all know foolish people who get themselves into trouble by not heeding wise advice. Or people who have no respect for the law and lead a life of crime. If more people would heed the word of the Bible they would find that their life is less troublesome. When it says fools despise wisdom and discipline it is true. I have known several people who are actually proud of the things they do even if they are illegal. When they finally get caught they wonder what happened. Then they go right back out and do the same type of thing over and over. Even if you are a person who does not believe in God or is not a Christian you have to realize that most of our laws started with the 10 Commandments. We would all agree that these are wise things to follow in a civilized society. I think my thoughts may have been a little scattered with this one so will try to be a little more clear and concise with future posts.

The Dark Knight (slight spoiler)

2008-07-21T16:54:00.002-04:00

I went to see Dark Knight yesterday after church. In one word, AWESOME! I could not believe that a movie would sell out at 1 In the afternoon on a Sunday. No wonder it broke a box office record For opening weekend ticket sales. When we got to the theater every seat where we usually sit for wheelchairs was taken. No place for me to sit and be with my family. Then as my eyes adjusted I realized there was a ramp instead of stairs to get down to the lower area (a.k.a. The break your neck to see section). So I sat front row center but fortunately with the tilt Mechanism of my chair I was completely comfortable.

The movie was able to keep my attention the whole time. I am not one to give spoilers so I will not give any movie details or comment on my favorite scenes. I will say this though, just as I thought they were wrapping things up they go into more scenes and end up having enough for two movies. I like movies like this because for the price you pay to get in you need to feel you got your money's worth.

In part of the plot the Joker was able to get normally upstanding Citizens to do things they normally wouldn't by preying on them at moments of weakness. When they were having extremely hard times in their life. I really saw that as a representation of how the devil works. At our most difficult moments, at our weakest points he is right there trying to tempt us. Doesn't mean he has to win but those are the moments when we have to be the strongest.

Even if you don't agree with that the movie has a lot to say about how humans can change and literally turn on each other when the chips are down. It was a great movie and I would recommend it to anyone. Unless you have young kids who shouldn't be seen all the violence.

Doing the right thing

2008-06-02T22:25:00.000-04:00

Identical Cousins

2008-05-30T22:35:00.000-04:00

To Write Love On Her Arms

2008-05-18T17:51:00.002-04:00

The rest of the story: http://twloha.com/index.php Or on YouTube: http://www.youtube.com/watch?v=OHaFrS3TE04

McCain should fire Charlie Black

2008-05-16T17:00:00.000-04:00

Kids are the future

2008-05-10T17:28:00.002-04:00

I recently received a e-mail from someone who had listened to the podcast I was doing a year or so ago. I thought I would share what they had to save not to pat myself on the back but to share the story she told about visiting some children at an elementary school. This individual is disabled for yourself and was there to speak to the children which I believe were also disabled. I believe it's important for us over disabled people to try to help the younger ones get a good start before they have a chance to have society put any sort of limitations upon them. Before I start to ramble this is what she wrote: Hi Dwight, This is going to be long, but you've put in the time for advocacy, so you deserve some appreciative writing in return. At the Maryland rally to close Rosewood institution last October, we thought we might like to fold our stories and demands for civil rights into paper airplanes and fly them over the fence into the Governor's back yard. "That's another thing I never learned to do, next to standing ovations and high-fives," said a quadriplegic man. Governor O'Malley declared a program for its closing in January of this year. Sometimes showing up is more important than whether or not you do everything that happens there, eh? I wish I could have taken a photo, but the imagery is like this: lines of people in wheelchairs, or with walkers, unsteady gaits, and all their assorted aids and advocates, storming the State Capitol building in Annapolis, rolling by police officers, exercising their rights to rally, speak, and petition the government. I work for an agency in Maryland that helps people with cognitive and developmental disabilities achieve full community life. My partner works with two brothers living with MD who work on a self-employment project. They own their own multimedia business. I'm a geek, so seeing these forays into technology are the most exciting things in the universe! Your CripCast project and Blogspot are wonderful. I am up late because tomorrow I have a meeting with my college disabilities services coordinator and I am nervous. I am struggling to get through school at the complications of my own health. I want to share with you the following things I have learned in a lifetime of working with people who have disabilities, and ultimately finding myself in the same situation:-I am incredible.-Life is harder when you need extra help to get through it.-People with disabilities are so patient with each other, but often it's hard to be patient with ourselves.-I have confidence in all my friends and coworkers with and without disabilities, but their confidences in me often seem to fall short. I have to do extra work to reassure them of my capabilities and to make sure they also understand my fears.-I would never have become so creative if it weren't for the way my life has been. I have always made myself available to people with disabilities. I have always volunteered and stayed active, advocating here and there. Now, I need the advantages I've worked to preserve. This is a big change for me. I think of myself as an activist. But now that I'm in it, I am compelled to do even more than I did before. I suppose it's just the peak point that we all reach where it's sink or swim. So I've started a YouTube: www.youtube.com/ufo8mykat but it's still kind of a side project while I try to get my life together. I am meeting with people and researching. When I pose in photos, I don't take my braces off of my hands or my ankles or knees. This is what I look like, and if people want to be a part of my life, they cannot edit out the parts they don't like. I read about your Trach... I know they're tough to work with even if your hands work to keep them clean and comfortable. You'd think the technology would be a little further along by now... what kinds of changes would you make to a Trach? If a person has a cognitive disability on top of all of it, do you think there could be some kind of blinking light to flag for them when they can speak? Today I went to 7 classrooms in a local elementary school to explain what it means to use adaptive technology, assistive technology, and why information technology is a growing field for people with disabilities. It was really hard to put the lesson together. I'll paste my rough write-up: -=-=- The wiggly one in the red shirt had something on his mind. His attention peaked when I pulled out my IBM Model M keyboard and talked about how people who think differently do a lot of the same things, like recycle old keyboards. The child in a light blue t-shirt with an audio headset accommodation thanked me in ASL after the most important lesson was over. He was 6, had autism, and knew exactly what I was doing. THANK YOU! He screamed. This is the most incredible moment I have ever experienced in explaining disabilities. Every child could relate to being different. Howard County is privileged, and still, some children were invisible. It hit hard when I saw children left out. The boy in blue was taken to the back of the room while I passed around an ethernet cable to show what it was like to be connected to each other. One at a time, each child passed end over end, through the tangled pile of kids, so everyone had a chance. Two girls in the back row and the boy in blue missed a chance. I started over, and the two girls got the cable this time. “Is that everybody?” I asked. “Yes!” they said, glad they’d done it again and gotten everybody. “NO!” said another boy. “Who didn’t get it?” I let that boy share the cable with the boy in blue. The boy in blue passed it on, and the cable made its way back to me. The other students learned that it takes an extra effort to think of everybody, that they sit in different places or have disabilities, or they’re just not outgoing. They watched their classmate stand up, reach out to one who had no chance, and make sure everyone was included. Some hands meandered like finger painting in thin air, while others rocketed up and down as I asked questions: who likes video games? Who turned in a library book today? Last week? Who has books at home? Who’s rich? What does it mean when we use something again? Who would rather use a telephone than a calculator? Who uses a screwdriver? Who thinks about things? Who likes to remember things? Who reads? Most hands went up when I asked who had seen a wheelchair. “How do you feel and what do you think when you see someone in a wheelchair?” The answers: they might have a broken foot, they might have a broken arm (we tried that one again), they might have to stay there, it’s sad. The answer I expected was what my generation gave me: there’s something wrong with them. No one raised a hand when I asked who had heard the word “disability.” I was about to encode young children with a word that, if delivered wrong, was going to carry a life-long stigma. Teachers, computers, parents, and the library are reportedly where kids go for answers. No student said they ask their classmates. No hand ambled upward when I asked if anyone could think of at least one classmate that they thought was smart. Today children heard a new word: Douzo. I said it over and over again. “Douzo, douzo, douzo. Doesn’t that sound different?” The girl with blonde hair and blue eyes whose parents spoke Japanese sat alone at a table, and I don’t know why she was there. She didn’t get the yellow ethernet cable. When somebody brought it to her, I let her tell the classroom what Douzo meant. If they hadn’t reached out and included her, they would not have learned from her that douzo means please. They might not have unlocked that from her, and she would not know that being able to read is an accomplishment. She would not know that she could give information to other people, even so young. What a sense of self-worth, to know something and share it at age 6. She was a teacher for a moment, and if no one had reached out, she would have been silenced, excluded. “Um, what’s wrong with your hands?” asked the wiggler. Joyous day, I thought, this boy understood my lesson on asking before you feel sad about someone’s disability, because you might just not understand. I had just spent a half hour explaining how I use technology to solve problems, but I hadn’t said a word about what was “wrong” with me. I didn’t say the word, it didn’t matter. What mattered was what was wrong: my thumbs don’t hold together like other people’s thumb bones, and that I’d used technology to fix it: splints. It didn't compute for the students that a person standing in front of them would talk about what it's like to be in a wheelchair. Could someone really only need a wheelchair some of the time, and not have a broken leg? I had set the children to wondering before they decided that sad was the right way to feel. That was my goal, just to get them thinking about it. I didn't have a lot of time to turn around their emotions; they'll have to figure that out on their own. But still, success! I taught everything I am today, and where I come from: multilingual, technological, strong, poor, creative, living with a disability, a good listener, a reader. Every child was one of those things. There is not one child I didn’t reach. It didn’t take a plenary session, money, a Federal Act. It took a bunch of kids sitting on the floor in a room, and some old technology I didn’t throw away. I could learn anything, change my world to match my needs, think about other people and solve problems, and earn enough money to make a living. I don’t know who will remember me, but I do know that every child I saw this morning got an “a-ha!” moment about themselves. I hope they will pay it forward. -=-=- I hope this little note has given you some encouragement for the time you put in to reaching out. The MD community, especially, has never had the chance to get together and advocate. I'm so glad you are speaking up! I have so much hope for the future. I hope you can know for at least this day that you have reached an attentive ear, and that there are people in it with you, even though you can't see us. I think kids are getting the point at younger and younger ages. Here in Maryland, the schools are wildly diverse! I've never seen anything like it! So they all know what it's like to be different. So many of them, though, didn't know that a wheelchair is a good thing. I thought of tying their legs together and having them wiggle around until they knew how much of a relief it would be if they could use a wheelchair. :) Have you ever wanted to do a lab like that? Or put vaseline on sunglasses, put them on the kids, and have them write a letter, address and stamp an envelope, fold and stuff the letter? If only I had more time. I'm gettin' kinda rambly. The point is really to thank you and share some of the things we're doing up here to do our part. Keep it up! Be well,Sama

Live Like You Were Dying

2008-04-07T22:20:00.000-04:00

I had a really great day yesterday and thought I would share it with you all. I started my day at about 6 a.m. with my morning medications and breakfast. I had the most delicious breakfast. Because of my condition I sometimes have trouble swallowing so if I am eating a food I know gives me trouble I have to purée it. I mention this because I used to love an omelette with kickers from Domino's pizza but when I lost some swallowing they would get stuck in my throat choking me. I'd assume puréeing would be rather disgusting in this case but was pleasantly surprised. It gave the eggs a lot of flavor and actually made them moister which gave me an easier time when eating. This might sound mundane but for someone in my situation and it means a lot to find another enjoyable food I can actually eat. After breakfast and a nice bath it was time to head to church. This week was part 2 of a four-part series on living like you were dying. I'm sure you have all heard the song by Tim McGraw. Part two was all about speaking sweeter and the effects that our words have on each other. Also that we need to choose our words carefully because they can either build someone up or care someone down. It was a very good service that made a lot of good points. At the end they interviewed (on a video) a man with ALS talking about how he regrets the bad things he said in his past and not seeing more good things especially when it came to his wife. It was very moving and I'm sure quite a few people needed tissues afterwards. After church we took Emma (our one year old Boston terrier) to a place downtown called city place. It's basically an outdoor marketplace but with very expensive stores. A great place to walk around especially since it was such a beautiful day. This was the first time we have ever taken her to such a place so it took her a little while to calm down. I think she couldn't figure out why it reasonable person she saw wasn't paying attention to her. She kept trying to fight the leash to go over to people. Also she kept trying to chase pigeons. At one point my dad left my mom and me with Emma while he walked over to the Starbucks to get some coffee. The dog started crying like someone died or something. After that she seemed to calm down and several people came up to ask about her. Mostly older couples. I told her afterwards she needed to get younger females to come over. I'm sure this was not the most exciting posts but it has been so long since I've posted I felt the need to write something to get back in the habit.

Transitioning to a trach

2008-03-24T22:48:00.001-04:00

I had a comment posted on one of my posts but I could not figure out how to reply to the person. Either you can't on blogger or I am just not seeing it. So I will write a brief applied without (hopefully) giving away this persons information. Basically, the person has a fresh trach (a few weeks ago) and is feeling a bit self-conscious about people staring. I apologize ahead of time if this person does not appreciate this blog post but I thought it important to respond to him. I have been trached since I was about 19 years old and was very self-conscious about it for quite a while especially when going out in public. I always felt like that is all they could stare at. After some time and becoming comfortable with it I believe at least 50% of the time I was being overly sensitive. I by no means mean to imply that you are wrong for your feelings. I know they are very real. I find that when someone stairs no matter what the reason my best response is to simply say hello. It will do one of two things; embarrass them for being caught staring and being rude or put them at ease and let them realize it is okay to talk to you. I find that most people would like to say something but are afraid because they have never had to deal with a situation like that or they fear that asking you about it will embarrass you. It will take some time to get comfortable with both the trach and people sometimes staring. Part of the problem is that so many things in society program us to believe that you and I being disabled or different somehow makes us inferior to others. This can apply to anybody not just you and I. I have a friend who is overweight and has the very same issues when it comes to being out in public. I wish I could give you some trick to just make all those feelings you have when you go out in public and/or people stare go away. Unfortunately, that is something that you will have to work out for yourself. You have to find a place within yourself where you can feel and realize that you are not inferior to anyone and have just as much right to do the things you do as they do. As far as not being able to speak in complete sentences, I believe that it's not uncommon. You are lucky actually because when I was first trached I could not speak for several months. They had given me a cuffed trach but as soon as I switched to a cuffles trach I was able to start speaking that day. I had to learn to time my speech with my ventilator when I was on it. When I was not on a ventilator it wasn't quite as bad but still could not speak to the length I was used to. I was not sure by the person to comment if they were on a ventilator or not. Or if they were using a Passey-Meur valve (I'm sure I didn't spell that correctly). They make a Passey-Meur valve when you are not on the ventilator and one for when you are on a ventilator. If you are not sure about this just ask your respiratory therapist or whoever supplies your medical supplies. If the person who commented would like to speak to me more on this than they can contact me at my Hotmail address which is kuaika@hotmail.com God bless you and I wish you the best!

A Beautiful Weekend

2008-03-02T23:29:00.000-05:00

I had a great weekend. It was a beautiful day on Saturday. Only about 72° or so with the sun shining. Managed to wake up to buy 10 a.m. which is good for me. Was out of the house by a little before 1. We headed to the movie theater and saw The Bucket List. It started out a little slow but turned out to be a great movie. But hey, how could you go wrong with Jack Nicholson and Morgan Freeman? It was good therapy for me with the recent death of my friend. Some of it really reminded me of them especially since we used to do quite a bit together. Even without that it was a very good movie. You'll laugh and you'll cry. Afterwards we had lunch at Friendly's. While I did not have room for dessert I made sure to get something to go to eat later as a late-night snack. It was some sort of chocolate fudge Brownie dessert. It was so rich I could only eat half of it if that. Then after getting home and resting for about an hour I was able to watch the online Saturday night service at my church. It was good and was able to chat with some people from the church afterwards. Then this morning my brother came for breakfast and brought his new puppy. His name is Prince and is Boston Terrier mixed with boxer. Him and my dog Emma wrestled almost the entire time he was here. So it was a great weekend all around. Until next time.

A Return From A Long Hiatus From Blogging

2008-02-28T16:21:00.001-05:00

I have not quite felt moved to write a blog entry in months. I am finally up to it and will probably be brief because several things have happened since my last real entry. I don't want to go into great detail on every little thing.

I guess the biggest thing that happened is that a friend of mine died two weeks ago tomorrow. Some of you may know him if you live local to me. Richard Barrera died the day after turning 39 years old. He succumbed to Beckers Muscular Dystrophy. He was unfortunately the type of person who would not take any measures to prolong his life. He had got much weaker over the past year or two and was pretty much confined to his house which is out of character for him. He was always going out and doing things. He recently was having trouble swallowing and after a swallow study was told nothing was going down correctly. On top of that he was having severe constipation. Several weeks before he died he started with hospice. He called me before hand and we were able to say goodbye. I tried to call him twice afterwards. The first time he had just taken some morphine and was out of it and could only speak for a few moments. And the second time he had already lapsed into a coma. But someone held the phone to his ear so I could speak and hopefully he heard me. I think maybe two days later he had passed. I will miss him greatly since he was a great friend. When things like this happen it makes you appreciate just how short our lives or so I vow to live my life to the fullest.

I can only remember two things I have done in the past few months off the top of my head but I am sure I have done more. The weekend before Christmas I spent the night at the Seminole Hard Rock Casino. We had a great time but we still did not see the entire place. We played some slots and I played some poker (which I did better at than at the slots). I lost $50 but that is actually not that bad for my skill level. We were exhausted by 11 at night so went to bed before getting to check out any of their nightclubs.

Most recently I went to a street painting art festival in downtown Lake Worth. I am always seen stories about it after the fact but now have finally gotten to see it. They have all sorts of people using chalk to do grinds on the street. It was a very nice day and some of the artwork was actually pretty good. Well that is all I can think of to write for now but hopefully will have some new adventures before long to write about.

2007-12-23T23:10:00.000-05:00

I'm evaluating a multi-media course on blogging from the folks at Simpleology. For a while, they're letting you snag it for free if you post about it on your blog.

It covers:

The best blogging techniques.
How to get traffic to your blog.
How to turn your blog into money.

I'll let you know what I think once I've had a chance to check it out. Meanwhile, go grab yours while it's still free.

Dick Cheney knew the war would be a mess

2007-08-15T19:41:00.000-04:00

I wonder how much it cost to buy a vice president. To cause him to go against his own beliefs less than 10 years later. Watch the video and you will know what I'm am talking about.

A pleasant visit with a friend

2007-08-11T22:29:00.001-04:00

My friend Rebecca from California came to see me for the third time this past week. She visited me on two occasions last year after having known each other for around five years. Our history is a long story after five years but we have become very good friends.

Anyway, she left California on a flight headed for Atlanta around midnight her time and arrived in West Palm Beach around 9:45 Monday morning. Needless to say we did not do anything on Monday except hang out at my house. I am not used to getting up early so I was also tired that day and she was from the flight. Everyone at my house was tired that day. It was quite the sight, I was tilted back in my chair sleeping, she was on the couch sleeping, my mother was on another chair sleeping, the dog was also sleeping and also my father was in the other room sleeping. Not one of us in the living room intended to take a rest but fell asleep with the television on.

We did have a very nice dinner at home that evening. My mother always prepares the best food but then again I am biased. We had roast pork, mashed potatoes, stuffing, and vegatables. Then we just watched some more television and that some catching up and called it an early night.

On the Saturday prior to her visit I had put the Bovina trach back again since I thought my previous problem was just because of the blood. I was wrong. On Tuesday morning the high pressure alarm on my ventilator went off and we could not get a suction catheter into my trach tube. So we changed the trach back to my Shiley before I got into a critical situation. When we look at the trach that was taken out you could see that mucus had started to harden and was blocking the tube. Something about my secretions and that type of trach don't seem to mix. So I have decided to stick with the Shiley until I can see an ENT. I have an appointment with one since I finally found a doctor to take Medicaid all the way in Miami. The appointment is not until October.

So I tried to go back to sleep for another hour after my little emergency what didn't get much more sleep 7:30 in the morning. After I did my morning routine I woke up Rebecca and and had a bite to eat while she got ready to leave for the mall. We went to the mall and had a light lunch at a Chinese place in the food court. We then helped my nurse (I should say she helped her) find a dress for her upcoming trip. After doing that we looked around for maybe another hour and then headed to the front of the mall to wait for our ride. We waited maybe one half hour for the ride. I was hoping we would be back home by 5:30 maybe 6:00. We get in the van and there are two people needing to be dropped off ahead of us. And after we get in they call him and tell him to pick somebody else up first. After all this we did not get home until 7 p.m. almost. I did not let it get to me even though we have plans to go to dinner.

So after I change my sweaty shirt and have a breathing treatment and charge my ventilator for about half an hour we head out. We went to a restaurant called Brewzii's which serves Italian and American food. They have some of the best service I had seen in some time. Rebecca and my dad were the smart ones and only ordered lasagna. I had a very large plate of grilled maui maui (?) With mashed potatoes. And my mother ordered something they called mile high meatloaf. We didn't think they literally meant a mile high. Everything was excellent.

We had just finished eating when the battery low alarm on my vent went off shortly followed by the battery empty alarm. So while my father stayed behind to take care of the bill the rest of us took off to a spot where we knew there was a plug. With this ventilator you never quite know how long it is going to take to get a complete charge so obviously that half hour before we left the house was not enough. So we stayed there for about half an hour to let the battery charge. Luckily we were having dinner at a place downtown where there is always stuff going on so it wasn't like we were just stuck at the restaurant.

When my father caught up to us he said that when he asked the girl for the bill she told him it was already taken care of. I guess the man having dinner a table or two over had taken care of the bill. The girl waiting on us pointed him out to my dad. So he introduced himself to the man and said thank you.

I believe this happened because you get what you put out. Earlier that week my father had hired someone to install carpet in our spare bedroom. This person gave us an extremely great deal since it was carpet that was mistakenly delivered somewhere and they could not resell it. This person was also someone who was having a hard time of things lately. So my father gave him extra money beyond what he was owed. My point is that kindness was rewarded with kindness.

After dinner we stopped at a little nightclub for about an hour to listen to the band and have a drink. There were hardly any people there but what do you expect on a Tuesday night. The band was okay and played a good variety.

On Wednesday we went to the Palm Beach Zoo. I will never do that in the middle of August again. It was so hot that when I got home I had to change my clothes and they were literally soaked. Not much to say about that visit to the zoo. It took us maybe an hour and a half to walk the whole thing.

Rebecca tried to see about getting a later flight out but was unable to so she left on Thursday afternoon/evening. She had a safe trip home.

Until my next post.

8 Random Facts

2007-07-31T21:52:00.000-04:00

I was tagged by Scott from Scott Sands Alive to play a little game called 8 Random Facts. In this game you are supposed to put a blog post on your blog with 8 random facts about yourself. After you do this you are supposed to tag 8 more bloggers to do the same thing. Since I only know a few bloggers and Scott already tagged these people I am simply going to post my 8 random facts. So here goes. 1. I am a Cleveland Browns fan (please keep your snickering to a minimum) 2. I believe in the power of energy when it comes to healing 3. I was once told I would never be able to eat again but was able to within a few months 4. I once met three actors from the X-Files 5. I usually hate doing lists like this 6. My great-grandmother contacted me after her death 7. The best concert I have seen is a tie between U2 and Roger Waters 8. I lived in Canton, Ohio for 12 years and never once went to the football Hall of Fame.

A scary situation

2007-07-30T23:36:00.000-04:00

Since I had had my bronchoscopy I was having trouble with the high-pressure on my ventilator going off. The doctors said I probably just had some plugs that need to break up. I guess when they look around down in my throat and chest there was a lot of old stuff that they needed to get out and not to mention the trauma created by the poking around. And I did get quite a few large plugs of mucus and old dried up blood. Then on Friday things began to get quite a bit worse. It started out with a lot of stubborn suction. Then it became more and more difficult to even use the ambu bag. At one point it would not work at all but luckily I repositioned and was able to get a little air. We figured the trach was probably blocked. On this particular day it was just me and the nurse at the house. My fear was that if she took the trach out and it was something more than simply the trach tube being blocked I would have been in real trouble. So we called 911 and she bagged me with great difficulty until they arrived. At one point my oxygen went down into the 70% range. After the fact my nurse that day said that if the paramedics had taken any longer she would have had no choice but to stop bagging me and just change the trach. So the paramedics come in and one of them takes over bagging me while my nurse gets ready to change my trach. As soon as it was changed it became easy to bag me and my oxygen saturation went quickly back up to near 90. After all that of course it took quite a while to get back to my normal range of the high 90s. After taking the trach out you could see how it was completely blocked in the end. And after sticking something through it we discovered that it was pretty much blocked through the entire tube. We ended up putting in a smaller size trach that I was using before the doctor told me to use the bigger one. I decided to let my through heal and keep the smaller trach in for a week and then I will try to put the larger trach back in.

A successful procedure

2007-07-23T01:09:00.000-04:00

After about six months of not being able to get anywhere when it comes to taking care of the problem of my butt everything seemed to happen quickly within a two-week period. Anyway, to make a long story short I went to the hospital on July 12 for an outpatient procedure. I was scheduled to get a colonoscopy, bronchoscopy, and have what the doctor called Sentinel tags removed from my rear. The anesthesiologist had me have a very quick EKG followed by a stick to get my potassium level. The potassium was a little low but not so low that they could not go through with the procedure. The potassium was probably low because the day before I had to take a great amount of laxatives to prepare for the colonoscopy. And the EKG showed one or two irregularities. The one type I already knew about from the cardiologist but the other one was the first I'd heard of it. Because of that I have appointments to get more blood drawn and see the cardiologist later this week. Since it is difficult for them to start an IV on me they first gave me some gas when I got into the OR. They said that way my body would be more relaxed and the gas would dilate my blood vessels to make it easier to start an IV. It only lasted about 5 or 10 seconds before I was out but that gas was pretty trippy. At one point someone walked by and it appeared as if they had a trail behind them. My colonoscopy was clear, they removed the skin on my butt and did a bronchoscopy. When they did the bronchoscopy they replaced my Shiley 4 trach with a Bovina 6. I guess they had some trouble doing the bronchoscopy though. First they tried going through my nose, and then they tried going through my mouth, and when that did not work they finally took my trach out and went down that way. So when I came out of surgery there was a little blood in my nose and my tongue was swollen to the point that I could not keep it in my mouth. They even gave me some sort of steroid to get the swelling to start coming down. I thought that the bronchoscopy would have been the least of my worries given the other problems. The doctor was concerned after the bronchoscopy though. He said cancel I basically don't have any muscle or fat in my trachea, so it is basically just an open hole. The concern he seemed to have is over time possible perforation. Definitely not a pleasant sounding way to go. Since his specialty is not necessarily the trachea area he told me to find a specialist. Actually, all this information is second hand so I will know more when I go to my follow-up appointment on Wednesday. I was still out of it so the doctor explained everything to my family first. Since this is something serious it is a very good thing that I started having trouble with my low pressure alarm right before I was to schedule the procedure. Otherwise, I would have no clue about this possible problem. I do not know exactly what type of position they must have put my neck in but it is still bothering me. It has gotten a lot better over the past week and a half but not back to normal yet. It took me about four days before I was able to finally get my stomach to stop bothering me after the procedure. My digestive system was basically empty so as soon as I was able to get a good amount of food in me things started to get much better. My butt was sore when it came to using the bathroom but today started to get better with less discomfort. Now I just need my neck to completely stop bothering me and find a specialist for my trach. One little bit of good news is that a good friend of mine is going to come for a visit August 6. She is only staying for 2-3 days but it should still be a nice visit. Now I need to plan some things to do.

2007-06-26T01:00:00.000-04:00

I do not have anything new but I just saw the trailer for the new Michael Moore movie which is called Sicko. I plan on seeing it and got a good laugh at some of the scenes in the trailer so I thought you all might like to see it.

More runaround

2007-06-17T01:40:00.000-04:00

I finally got my computer on Friday, June 8. It arrived without a monitor though. I guess they neglected to tell us that the monitor was on back order and would not be available to ship until Monday the 11th. So that part arrived this past Thursday. Luckily the monitor from my old computer worked as a temporary fix even though it made everything appear huge on the screen. It took me all weekend I think to figure out how to do things and get everything just the way I like it. And then it took me another day after receiving the monitor to adjust the rest. It has a nice large LCD monitor which allows me to comfortably have several windows open on the screen. The other day I was even able to watch a DVD in the corner while I was checking some e-mail and surfing the Internet.

On Friday night the 8th the low pressure alarm on my ventilator kept going off as I would drift off to sleep. After dealing with that throughout the night called the respiratory company and they had me turn now down the sensitivity on the low pressure. That helped somewhat but then it started doing it again and we tightened up my trachea ties and finally I was able to get some good sleep.

That seemed to be the end of it but then it occurred once or twice throughout the week and several times I woke up either with a headache or short of breath and also I was having difficulty talking properly. So on Friday I called my doctor and the first thing they say is to have the company check it again (the vent). What they sent to the respiratory company said that my ventilator kept shutting off. I don't know how they got that.

Anyway, the company is supposed to come and check it out again on Monday. But in the meantime all of the problems I have been having have have resolved themselves. On this past Friday I was being suctioned and got a considerably large plug out and after this is when I started to feel better. You would think that that would have caused high pressure to go off. I don't know if that was the cause or a coincidence but I am doing much better.

As far as getting my colonoscopy and tags removed I was told by the G.I. doctor that they were not comfortable doing it on me in my area. They recommended I have it done down in Miami at Mount Sinai Medical Center. I think I have a tentative date scheduled for the end of July but I am still not sure what I am doing and if I doing this. I am looking to get more information as to what type of risk it is that they are or I am looking at. I don't know if they are just being overly cautious because of the muscular dystrophy or if there is something else. This is something I am going to be finding out before I decide to do anything.

Catching Up

2007-06-05T17:53:00.000-04:00

First of all, my father was released from the hospital on the 24th after a heart catheterization found no blockage. He was sent home on blood pressure medication and cholesterol lowering medication. He is now back to his normal activities and now both himself and my mother have stopped smoking. They did remarkably well during the first week using the patch and nicotine gum. But this weekend they were starting to get a little irritable. Still there doing a lot better than the last two times they tried. On Sunday the 27th we ordered a new computer which is to be my birthday gift. Seeing it has not arrived yet it will be a belated birthday gift but I am quite excited about it. It is a great price for such a fast computer. It is using the fastest chip that is made by AMD at the moment. That is due to arrive at the end of the week. On Friday which was my birthday (June 1st) I went out for the evening. We left the house (one of my nurses, a friend of hers and myself) around 3:30 in the afternoon and went to Ruby Tuesday for lunch/dinner. I had my usual which is Creole catch which is just grilled tilapia which comes with rice which I always replace with mashed potatoes. It was delicious. I think I only had one bad meal at the place. My nurse had a BLT and her friend just ate from the salad bar. Altogether the total was only $40, not bad for three meals. After dinner we headed for a local strip club. The last time I was there all the girls seem to be on drugs but we decided to give the place another chance. This time all the girls seemed to be clean. It was still rather early when we arrived and I was not very impressed by the girls. They were all rather rough looking. After we were there about an hour they had some girl from Penthouse magazine perform. It was okay but you could tell she really didn't want to be there. It seemed like after that some better looking girls started dancing. There was only one who I would consider gorgeous, a nice Asian girl. I wanted to get a private dance from her but she was pretty popular and busy. So I got one from a very attractive blond girl. Not really much to write about it was just a typical night at a strip club. The whole thing gives rather boring after several times. Which is why I only go once in awhile not to mention money. It was an early night though we were back home by a little after 9 PM. I had a good time though. I currently don't have any plans yet for the next several weeks besides playing with my new toy. Also, I am still working on getting the colonoscopy and tags removed. I keep calling the doctor's office to make sure documents were faxed. Seems like a bit of a run around but am closer to getting things resolved. Hopefully it will not be as long before my next post.

Hypertension

2007-05-23T01:30:00.000-04:00

Well, after a busy but pretty good week last week, we are off to a rocky start this week. I am fine but my father is the one having the trouble. On Monday evening he suddenly got a very severe headache to the point of having to lie down. When the headache had not gone away in the morning he decided to take his blood pressure which was close to 180 over 140. So needless to say he went to the doctor who in turn sent him to the ER. What concerns me is the fact that he was nearly in an accident about two weeks ago and hit his head. He was riding his electric bike home (which goes about 20 miles an hour at the most) when he heard a car getting extremely close and moved the bike out of the way. When he swerved the bike hit the curb and he fell off. He hit his head but luckily he had his helmet on. He also had a hole above his lip. The next morning he looked at the helmet and it was dented. But being the typical male refused to go to the doctor. The next morning he had a bad headache but it eventually went away. My mother told me he had a few episodes of high blood pressure the past week or so. Anyway, at the ER they took a lot of blood work, an EKG, a chest x-ray, and a catscan. They also gave him to doses of a drug to lower the blood pressure which gave him a bad headache so they had to give them something else to relieve the headache. We still do not have the results of the scan and they admitted him to the hospital overnight. So we will no more in the morning.

The Dark Side Of The Moon

2007-05-19T10:00:00.000-04:00

Last night I went to see Roger Waters of Pink Floyd in concert. It was a pretty awesome show. It had threatened to rain all day but we got lucky and it was a beautiful night for a show at an amphitheater. I think it may have rained at one point for a bit but our seats were undercover. It was myself, my parents, and a friend of mine Richard who has Beckers Muscular Dystrophy. He met us at the show about five minutes before it started, I guess he had trouble with his ride finding the way to the place plus the traffic was horrendous. What normally takes us less than 20 minutes took about 45. He did mostly Pink Floyd songs but also did about 3 of his own songs from his solo career. There were plenty of visuals that were definitely anti-Bush. Hard to believe that there are actually still about 30% who approve of him but I am getting off track. At one point a giant inflated pig was brought through the crowd. And right around the ass of the pig were the words "impeach Bush now". I think that was the highlight of the show. After doing at least two hours of music they took a 15 minute break and then came back and did the entire album Dark Side Of The Moon. There were supposed to be a lot of lights and things in the audience but I guess they were having technical difficulties. And then after the entire album they did an encore which lasted at least 20 minutes. They definitely gave us our money's worth. It was pretty awesome for me to see all of these songs live since I have heard that music since since the womb. I sure which the band would get back together and do a reunion tour. Too many big egos I guess.

Pain In The Ass

2007-05-18T18:00:00.000-04:00

A little background before talking about the day. A few months ago I was having quite a bit of pain from what I thought was hemorrhoids. Was also getting some bleeding occasionally. So I made an appointment with who I was told was a GI doctor. He turned out to be a surgeon. I got the appointment through my nursing agency but I guess after the fact I found out they also wanted me to at least see this doctor in case at some time down the line I would need him to do the procedure if I were to need a G-tube. His specialty is minimally invasive surgery. Anyway, he informed me they were not hemorrhoids but Sentinel tags which I guess is basically small skin growths. I guess they usually grow near hemorrhoids or tears in the skin. His guess was that it probably was caused from bad constipation sometime in the past. His first recommendation was to soak my butt to make sure it is extra clean. Because the pain is caused from the tags being inflamed. That seemed to work for a bit but then went right back to bothering me. I was also getting a few episodes of quite a bit of bleeding and not seeing any obvious reason for it. So I went back to him. After examining me visually he said he could not see any reason to be bleeding externally. So he recommended I get a colonoscopy to rule out any problems in that area and he wanted me to try to have him remove the tags while they had me sedated for the colonoscopy. Which brings me to today's appointment with the GI doctor. That doctor was not sure if they wanted to do the procedure because of the muscular dystrophy and my compromise the lungs and cardiac function. He said also the fact that I am only 31 and ordinarily there should not be any issues but said if concerned about bleeding could do a barium enema. At first they were not going to do it at all because of what they saw as possible risks. But then decided to get all of my records from my other doctors and talk to my other doctors to get their opinions on my ability to go through the anesthesia/sedation. So a lot of things are up in the air still as far as what to do. Worst case scenario I'll just have to live with it. I was late getting out of the doctors office and when I got downstairs there was no van. So I called PalmTran to see if I had missed my ride and sure enough I had. That part was my fault because I should have called when I only had 15 minutes until I had to be ready for my ride and had not seen the doctor yet. What pissed me off though was when I called them they told me that the driver claims to have talked to me three times. Saying that each time I kept saying five more minutes. I did not talk to anybody. I do not appreciate being lied about. So I had to call later to file a complaint. Whatever good that will do. Not my week for confusion with my transportation.

Just A Good Day

2007-05-16T20:30:00.000-04:00

Today I had an appointment with my pulmonologist which is basically a five-minute appointment where I get refills on a prescription or two and listens to my lungs. When I have to arrange transportation it is really a pain in ass considering how short of a time I am actually in their office. As usual I got to the appointment so early that the doctor saw me before my appointment time. Which meant I had to sit around and wait an hour for my ride. At least I was a relatively nice day and got a little fresh air waiting. I had made arrangements to go downtown after the appointment and have some lunch. If I would have realized how close the doctor's office was to where I was going I would have not used the van and simply walked. Well actually I guess my nurse would have walked and pushed. By this time we were both starving so immediately went to the restaurant I wanted to eat at only to find out they are no longer opened for lunch. So we went to the restaurant next door which is called Legal Seafood. The prices were slightly higher than I usually pay but it was a nice treat. The food was excellent so worth the price. I also had a drink, rum and Coke. All it took was one since they made it so strong. Definitely not watered down. After lunch we simply walked around and did some window shopping. I checked out the latest expensive televisions and stereos and my nurse looked for clothes (see if you can guess which sex they were). We also ran into this girl who was sitting on her cell phone sending voice messages on some dating service trying to find a date. People she only was talking to for a few minutes she was trying to arrange to meet that day. A little too desperate for my taste. Interesting thing was her name was Hope. Quite fitting I thought. I missed my ride to go home because I was waiting in the wrong spot for them. What happened was the driver who brought us there dropped us off at a different spot than the address I had given. It was just around the corner from the correct address. Stupid me I simply came back to the same location when it was time instead of looking up at the address. Luckily, a van was there picking up some other people so PalmTran had them take me home. We were just a little late getting home.