Life in the Wheelchair Issue 3

Trying to get healthy while having Medicaid as your only insurance is an up hill battle that I am glad I have a nurse who is willing to fight them in order to get me the meds I needs to get better.

I currently have this weird bug in my urine that I am not even going to try to type out, I can't even say it. Anyways, To cure it, I need this one IV. Well it requires prior authorization from Medicaid to be able to administered to a patient, and well, I'm not authorized. It is the only thing that is going to kill it. This is how stupid the system is. I love being on socialized medicine. The Government really loves mess with a guy.

This is enough for a guy to go insane. I just can't take all the run around. I just have had enough of this, all of it. Having to have this kid of wheel chair instead of one that is smaller, easier to use and transport and flop up. You can only have these kids of medicines and if that doesn't work, well we are going to make you jump through hoops and hope that you don't get sicker or die while you wait for approval for the medicine that you need.

It is a shame that in the greatest country in the world in the state run health insurance program that they are willing to mess with someone's life in this sort of way. If this is what socialized medicine is forget it. This is the fours set of IV's I have been on this year. What is going to happen when I have to go on another one. Are they going to say that I have had enough and they are cutting me off. Where does it end with the government controlling my health.

Life in the Wheelchair Issue 2

Well, it is Easter is here and lent is over. As we celebrate the life of Christ and the tragic tribulation and final ascension into heaven, I wanted to share a thought and feelings that I had earlier this week watching something on a TV that really got to me.

I was watching the show “House” from this Monday night. For those who don't know what it is, it's a TV show about a Doctor and his team who have to cure some of the weirdest things. Any ways, one of the team members who was on House's team shot himself. This hit me hard, mainly because I, over the past two years, have known what it is to feel like that. I have gotten that low due to the fact I feel like I have lost everything in life. I can't move my legs. It was this major event that dragged me down to that level. There where many days where I had wished that I had not have made it threw surgery because of what the alternative of parallelization posed to me.

Eventually, I got over that feeling for the most part. I do think about how things are now and how hard it is to do things when it was really simple before. It is hard to find the strength everyday to keep going. And that taking the easy way out would be the way to go. But I keep going. I know that there are some people have never walked and have had to deal with this all their lives. My argument to them is that they never know what they are missing out on if they never walked before.

Trying to get past that feeling was a hard and tenuous struggle at first, they tried anti-depressants. I gave up on those because of deep and abiding personal belief in facing and trying to deal with your problem rather that mask it, hide it, and pretend it's not there by medicating yourself. To try to hide the pain and sadness by using a crutch. If you don't face your problems, your problem is still going to be there and your are going to have to deal with it eventually.

Well guys, here was a little look into what it was like those first few week, and really the first months to year after surgery. Issue 3 will hopefully be in a week.

Life in the wheelchair

Life in the wheelchair has been a hard life for my to adjust to over the last two years, but that is what I have been doing. Adjusting. The one that that I have been really having a hard time is the perception problem. This breaks down into a couple of different ways. One is the way I see myself in the chair and how it has become a part of me, and the second is how I feel how other perceive me in the chair.

Let us deal with the second one first. I really have a obscure view on this because the experiences I have to go by is the few friends contact I have had, my family, and the employees here at the nursing home.

First the employees. It is hard to get a true read on them about how they feel about people in wheelchairs. For the most part they are sympathetic and you would have to be when you are around it most of the time you are at work. But even talking to them, they tell me when they have to put on the fake motivational and sympathy for those who really don't need their chairs and use it as a crutch. These people kind of also make me feel a little made. Mainly because of the fact that they have the ability to walk and use their legs and chose not to, but chose not to because they are lazy and would rather sit down. I would think with a facility full of people who can't walk, that they would be even more motivated to do so. What I wouldn't give to have some of these people's legs for an hour.

Second is how my family deals with me being in the chair. First this is God Bless them for trying and spending money to get me in the house, even for just a little while. My Mom and Dad go to great lengths to try to get me out of the nursing home and to make things as normal as possible. But sometime they go too far and try too much. There is no “too much” in their eyes, but I can see when they are going and trying too hard. Such as trying to modify other people's homes so I can go over for holiday like Easter, whom my sister-in-law is hosting this year. But I am more than happy to bow out because I know how much trouble it is around the nursing how or at home. I can't fault them for trying but if you try, it is that they try too hard.

Third are my friends. So far of my friends, they have been supportive. They write me letters, emails, phone calls, and such But I have found who my core friends are and who have fallen by the waist side. There were many who I thought were really good friends who now don't call or email me. But through these blogs and sites like Myspace.com, facebook.com, and twitter.com I have reconnected with people from the past and have old friends come back and give motivation when I need it and help cheer me up when I was down. Even come in and play some Taboo. Thank you my friends.

Now on to how I perceive the chair and me.

I have come to terms with the chair and being in it. I see it as an extension of me. It is my legs, method of movement. With that I know that I am pretty mu going to be in it for a long time. At first when I was in it, I thought as myself as a hospital patient who wasn't allowed up and being pushed around. But couple of weeks into it they started making me push myself around. It hurt and helped to build up my arm strength up. But it wasn't until recently, that I started to changed how I looked at ,or rather forget that the chair was even there.

I, over the last few months have been coming to grips with the whole not walking thing, and with people telling me that I should give up hope and that there may be a chance. Well I have looked into it. There are a few new things in stem-cell research but it is a long way off and for now, please can we all agree to stop it with the, “Oh, You can't give up hope that one day you might walk. You never know.” I know this and I am not giving up hope, but I am being a realist that for right now and the fore see-able future, I am not going to be walking and going to be in the chair for a while. So please can we stop with the hope talk of walking and just accept the situation like I have. It will make me and all of you better able to deal with and accept this life that I now have.

Now, what has really started to happen is when I am rolling around, I am aware that I am pushing myself around in the chair. But recently, I have been noticing that when I am doing something, like grabbing something and wheeling around my room. Mainly small things and while I am distracted or have my mind else where, I don't notice me pushing myself. I don't notice the chair. It seems it is becoming more and more apart of me. When I do notice after that, it hits me that I just didn't noticed it and get two feelings. One is a feeling of depression because no matter how much my life may feel normal -- I am still paralyzed. The second is sense of acceptance and amazement that this is happening to me. It is a level of disbelief and hard fact that this is actually happening and is likely to be for life.

It is very strange to get these feelings and not paying attention to pushing yourself and accepting your lot in life. I am going to be writing more about my perspective on “Life in a Wheelchair” and how I am adapting. Later guys.

beating dreams

I've hated my dreams since my surgery. It is always about things I can do or have, like walking, doing normal things I know I'll never be able to do again. They seem to drive me nuts. They seem so real. So real that I think I am in real like and real life is the dream. It is hell when you wake up and you're still in hell after having a dream of heaven. It just drives the depression deeper. I would go into them but I really don't think that many would understand them.

But lately I devised a way to make me realize they are dreams and not real. I make a flaw in them. I would make one of the people have a weird film over their face. Or when I go into a stairwell I shrinks down infinitesimally. It helps me to know that it isn't real and I can't get lost in it. This maybe counter productive to what dreams are supposed to do, but I am just done dealing in false realities and false hope.

I Wake Up In the Morning

Mornings suck. I hate the morning. What it means is a lot of rolling around. I have to roll from side to side to pull my shorts up and get them right. Then slide my catheter through the leg on one side. Then I have to put the bed up to swing my legs over by hand over the side of the bed. Then I have to slide into the chair with the slide board. This usually messes up my shorts and a little pee comes out. That is why I have to wear a diaper. They call them "wings" here, but a spade is a spade. It is a diaper. Sometimes it doesn't get it all either and it gets on my shorts. Then I have to readjust but it doesn't always look right. Next we have to put my legs together. This means putting the protective boots on and then the leg rest and then towels for my knees so I do not cut into them again and cause more wounds. Then it's put the catheter in the bag and grab my stuff and I am on the go. On the go....

On the go to therapy during the week. Nowhere on the weekends. Most of the time it feels like I am going nowhere and in a hurry. Just once I would like to stand up and put my pants on, wear a pair of shoes. Not have to roll around all day with twisted piss ridden clothes. Most people here say, “Oh, it's nothing. It happens other people all the time.” Well it has never happened to me before and it hurts – a lot. Sometime when I really wet my self I fell like breaking down and just...... I don't know. Let us just say it isn't pretty nor appropriate to put on here.

Some mornings it takes an hour to get ready, sometimes longer. It all depends on pain and mood. Sometimes I just want to lay there and just cry. To think, that this is going to be the way I am going to have to go through life for the rest of my life. It is really hard to handle that. But I hold back the tears. I dry my eyes and blow my nose and I go on. For no other reason than I have nothing else better to do right now than to jump through hoops and go to therapy that just somedays I feel isn't going anywhere.

Harsh Realities

So it dawned on me that this being paralyzed thing is going to be permanent. I have thought about it, but in the back of my head I have always thought that I would walk again. But I cam to this harsh realization that I am going to be stuck like this for the rest of my life. It hit me as I was watching my shadow as I wheeled down the all after getting some coffee from the machine. I seen it and then looked at myself and thought, “I am in a wheelchair, and it isn't going to change.” It felt life to this point is over and that I am now a cripple. I know I have said it to people before but I was using it as a joke, but really, I am a cripple. Even if I do get braces for my legs and can hobble with them a little. I am still going to need the chair a lot and I am still going to be a cripple. It has been hard to deal with for the last couple of days, it is a very large and life changing idea to wrap your head around. I am going to be paralyzed for the rest of my life, how am I just supposed to accept that. I guess up till now I haven't. But I am. I am going to be paralyzed the rest of my life.

Parallel Worlds

In one of the ideas of parallel universes, there is a universe for every decision that you do or do not make. Also, there is is a dimension where everything is the opposite to what you are today. That when something bad happens to you here in this dimension, something good happen in the other one. If this is true, then the Ralph in the other dimension that is getting all the good stuff better enjoy all the misery that I am going through because it is driving me out of my mind. I just want to see what his life is like for the day, just to see what I am missing out on.

What America Is To Me

What do you think America is?

How would define what America is? Is it the freedoms that we enjoy that other countries don't. Is it your freedom to speak your mind, worship the God you want, the freedom of the press to bring you the news of your country with out the pressure of the government telling them what to tell you. Is it your right to bare arms. Your right to personal protection of self and property. Is it the right to protect you against illegal search and seizure. The right to be innocent before being proven guilty. The right not to make your self guilty and to be tried in an open court by a jury of your peers, also the right to face your accuser. It is also reassuring to know that the punishment shall fit the crime and the is no cruel and unusual punishment. These are the rights prescribed by the Bill of Rights. Probably one of the most nation-shaping document next to the Constitution.

But what else makes America, America? Is it the you can go from being a low level income family to being college professor. That opportunity is out there for you to just wake up and grab. Look at what some people where able to do with the opportunity that was given to them.

There was Dave Thomas. He was born to adopted parents in Atlantic City, New Jersey. He never met his real parents. He worked in the restaurant business from the age of 12. He then went into the Army where he went to cooks and bakers school. Upon discharge he was given the opportunity to turn around a failing KFC. He did and caught the attention of Col. Sanders. With him, Thomas revamped the menu and help the revolutionized the fast food industry.

From there he went and founded Wendy's in Columbus, Ohio. It is now the third largest chain in the world be hind McDonald's and Burger King with 6,700 locations. All this from a high school dropout. Dave Thomas died Jan. 8, 2002.

Another master of opportunity is that of Bill Gates. I think we all know his story from Harvard drop out to founder of the most used operating system for computers on the planet. He revolutionized the operating system process and sold it to the masses. He also introduce the notion of licensing software to make money for software writers.

There are millions of others who have come from all other walks of lives to make themselves more than what they were. But is that all that makes America, America?

Is what makes America, America, is that we get to vote for our leaders. They are not permanently imposed on us, or under the guise of a dictatorship or socialist/communistic rule. We have open, public elections, in which now those who meet the minimum standards of being 18 years old, a registered citizen and not committed a felony and still under probation of see your parole officer. Though it wasn't ways like this. It was first just land owner who were white and over 21. It wasn't till we had the Civil War that blacks were allowed to vote. Then came the direct voting for Senators in 1913. Women didn't obtain the right to vote until 1920. Finally the age was lowered to 18 in 1971. As you can see, our voting history may not have been the fairest to the people in sense that some were excluded for so long, but the process, the electoral college is maybe the fairest and most argued process out there.

What the Electoral College is, is an indirect election. In elections, the college has pledge to place the electorates that state has for the popular choice in the general election. They don't have too. The Electoral College can vote for whom ever they want, but as stated, the pledge to vote the way of the people. There are many argument for and against the college, that we should use a direct popular vote. That it give too much clout to swing states. Those for the college state that it is the only fair way to do it because it give equal weight based on the population of a state. Without the college, most elections could be won with just campaigning in California, New York, Texas, Illinois, and Florida. There are many more arguments for and against, and we have all been over them and that is the great thing about America, is that we can question out leaders. If we don't like what they are doing we can elect someone else next time, and if they are doing are really horrendous job we can call for impeachment of for recall.

America is also a place where ideas can flow like a river in our free public school system and our colleges and universities. People from all over the world come here to learn. A great many of us take out educations here for granted and don't appreciate what we have here. Places of higher learning were we can go and advance ourselves. We have the best schools for engineering, law, medicine, computer science, and so on and so forth. Most of our schools are even state funded and there are grants, loans and scholarship of all kind available out there. We just have to have the will and the want to go look for them. If we only put forth the effort that foreigners do when they are in our education system then we wouldn't need a “No Child Left Behind” programs.

Let us not forget that America has its own dark chapters. The biggest and perhaps still prevailing is the civil rights issue. Though great strides this past year, as a black man has risen to the highest office in all the land. Still there is a great divide in this country. Then there is the treatment of the original Americans. We have persecuted, hunted, cheated and abused the rights of the Native American. No sin is greater than that. There has been many growing pains in America and not all of them have ended well. We have fought and scraped and even try to kill our selves from the inside-out with the Civil War. Perhaps we shall all have a time to fight in this country, let us hope it is not with each other again.

But for every evil dark time, there has been a gleaming ray of hope. The birth of the nation from upstarts who would not be controlled from a king 3000 miles away, and a founding President who took the title with the notion that he would set it aside and let other be elected to lead and no one shall ever rule this land. To a unified country that referred to it self as the The United States and the bulwarks of a government of, by and for the people remained intact. The creation of manned flight by the Wright brothers to Charles Lindberg's Atlantic trip. From John Glenn and Alan B. Shepard in there short space journeys to Neil saying “One step for man, one giant leap for mankind.” Tl the invention of the microchip and the advent of Moore's law. We have either been the first in something or have done it the best.

America to me is all these things an more. More than I could express in any Online Blog, message forum or in any number of volumes of book if I were to ever write so much. America as I can best sum up is an idea of freedom and the good and the bad that goes with it. It will never be perfect. Nothing of man ever is. But it is the closest to the fairest and most revered. By the grace of any god that you may ascribe to or to which believe you have faith in, may it watch over the United States of America.

Now what do you think America is to you?

Normal

Normal, what is it, and what does it mean to us? It is a question that I was posed with today while in conversation with someone who is in the same boat as me. Paraplegia. We were talking about things that I am going through because I am new at this and she has been dealing with it since she could remember. I was talking about these new braces that were robotic. They are still in the prototype/research stage and the company is still not mass marketing them, but I was so hyped that something like that was out there and that it was possible that one day I could have them and I could walk. I could get back to "normal."

I was telling her about these things, and she was like, "that's so cool. Maybe when they come out you can walk and be normal again. I'm not going to. I am done with that stuff."

I was like okay. Then she went on.

"Normal for me is living in the chair and everything. I have been doing it since I can remember. I never did walk like, so the chair is normal. 'Normal' for you is walking around and doing things. For me it is the chair and I am cool with it."

I wasn't sure how to react. First I was like, don't you want to be like everyone else and normal. That probably the pig headed part of me coming out. Then I thought about what she said. She had gotten used to this life, and she could see that I still haven't let go of what my life once was. That I was looking at these braces as a way back to normality.

So I guess when you look at "normal," it depends on where your normal is coming from. It is normal for a person who works in the coal mine who is living paycheck to paycheck to exist in that life. If you put someone like Paris Hilton in a situation where she has no money like she does and help in life like she does and she had to sink or swim, we can all see the brick sinking to the bottom of the pool. She would be crying, loudly at that too, to have everything go back to normal.

I guess everything is perception.

I See Life In Algorithms

As I go through life, I am confronted in many different situations. Most of them are simple and come to a quick and easy solution. Some are more complex. When this happens I run the who thing through an algorithm. An algorithm, as defined by Merriam-Webster Online, is defined as a step-by-step procedure for solving a problem or accomplishing some end especially by a computer. I'll sit there and break down every decision and every choice and reaction that might happen. This is what usually helps keep me out of trouble but it usually ends up with the safe answer of not doing anything and avoiding people or situations.

Here is an example:

I had a chance to go to Walt Disney World in Florida one summer as an intern for school. I singed up and got accepted. It was going to pay minimum wage and have my room and board taken directly out of my pay check. While I was there I would be in monorail operations and attend classes. They had buses to take you to town if you needed things and you lived 4-8 to a suite. With all that described, I ultimately didn't go. It was based on three parts, one was on getting down there, second were the bills that I had accumulated at the time and had to be paid, and general felling of how would people accept me down there.

Let us take part one, getting down there. The first option, and the one I was rooting for was, was driving my car driving down there. With that came the following issues. One is gas money, the cost to get there and back and to run around down there. Two, maintenance and break downs. Back then I would have my father and I fix my car, being that far away, it wouldn't be feasible. What if it is stolen? What if it is Damaged? Etc. So, what other ways to get down there. We could fly. Well you would have to plan two one way tickets there and back. The second you would have to plan while you are there because you could be asked to stay on for a second semester. Well then there is the price. They aren't cheap. Would I have enough saved to pay for the second ticket home. Plus how would I get from the airport to Disney. Take a taxi, that would be a fortune. Try to figure out the bus schedule. There are still a lot of variables, but the main one is the money issue, especially for the return trip. This all leads in to bills that need to be paid.

The second main thing holding me back from going to Disney was that of the large amount of bills I had accumulated in my brief but expensive life so far. I was about 20,000 dollars in debt at the time and was barely making the minimum payments for the bills. I racked up all this debt from living with my then fiancée. It was from the both of us living on credit cards and trying to live together without money management. If I only knew then what I know now. I eventually filed for bankruptcy. This is a major NO is the Disney quest that I was on. There would been no way for me to be able to keep up with my bills with being there and everything. I needed my job as a pizza delivery driver to get by. It was a hard money management lesson I had to learn.

The third reason is a more personal reason and has to do with me self esteem. I thought that I wouldn't be able to get along with the roommate that I would have because of a few factors. One, I am not the most organized person in the world. I am organized through chaos. But a lot of guys my age are like that so that may not have been as big of an issue at I thought. Secondly would be my biggest hurdle, and that would be my size and the way most people I think people react to it. At least form the mind of a 20 year old. I thought they would not accept me and not include me in going out or going into the part for recreation and stuff. I just thought they wouldn't let me be their friend. It was a hard thing for me growing up and at the time, trying to make good and close friends so that is why this made me not go to Disney.

So as you can see my thought pattern in that it follows an algorithm. I look at things that I want to do and the options to get them done, and see if they pass the yes no algorithm. In this case, and in most cases it seems, that it always fails to not doing what I would like to see happen. You should see it when I apply it to relationships. Sometime I get into the algorithm to a fault and I will just go into seeing what should happen if a happen do they react b or c. Well if b well continue, if c stop. Sometimes I get ahead of my self and I start looking at it days, weeks, months, and sometimes even what years of decisions would bring. It is this kind of thinking that gets me in trouble, because I think I see where everything is going to go and most of the time it leads to a bad end in my mind. I think that is because that is where mostly all my relationships have lead to.

At any rate, can I keep applying the algorithm decision making process to my life. Most of the time it has lead to me not doing what I most wished because of this way of making decisions. But the real question is, do I have the fortitude to make decisions with out my decision making process I have leaned on all my life.

2008 Year Review

The past year has been one of weirdness and setbacks. I went from one end of the emotional spectrum to the other. Where to start. I guess the beginning is always a good place.

Well it really starts back in the end of 2007. I came to Andover Village Retirement Center (AVRC) for rehab for my paralysis. I chose here because they have been featured on Discover Health Channel as being equipped for bariatric and I thought since they handle them for rehab and weight loss, that I would get the best rehab chances here. Well things were going good and I even got to being able to get up and stand in the parallel bars for 30 seconds by the time March came. This is also when progress stopped.

I developed nasty wounds on the bottom of my heals and had to stop standing. I developed them from having my feet rest right on the foot pedals with no shoe on because I had an order for no shoes from Hillside when I had the wounds on the back of my ankles. Well, by May I was discharged from therapy because I couldn't stand because of them, and I wasn't making enough progress with the other therapy like the electro shocks and stuff to keep me on.

By June, the wound on my left foot had healed, but my right foot had broken open and had started to tunnel in. It may have done this from the lack of the proper footwear to keep pressure off it, or miss management of the wound by the wound care nurse. At any rate, you could smell the decaying flesh and the whole went all the way to the bone. I ended up in the hospital by the end of July over it. I was on IV antibiotics for it and had to get a gamma scan to see how deep the infection was.

I went back to AVRC, I had a pick line in my arm for the IV that I got three times a day. But it never felt right. It kept hurting from the time I got it in till the third week when it was red and puss and irritated. Here I got a infection in Arm. It was called the super A bug. It is only found in contaminated hospital equipment. It needed 2 IV a day. So I was getting 5 a day for two weeks. Then on top of that, I got to go into the hyperbaric chamber.

Yes, for eight weeks, got to get hauled out of AVRC to go to St Joe's to get put into a tube. Then It was pressurized with oxygen to 3 atmospheres, it was like being 66 feet underwater. It made my ears pop and sometimes gave me a panic attack and have low blood pressure. There were no radios, newspapers, books, video games, nothing was allowed in with you. Because if you create static electricity in a pure oxygen atmosphere and make it spark, it will explode. So all I could do is watch TV. They had one mounted over the tube. I got to watch the stock market crash first, then see a good republican candidate blow it.

Well once my foot was healed and I was out of hyperbarics, it was the second week of November. I got back into therapy with some new goals. One was to have my legs pointing back towards the ceiling. The second was to get me to walk. We'll deal with the second one first.

In order to walk, we were going to install a new plan to put cerebral palsy braces on my knees and ankles and use the hip muscles that were working to swing the legs. This requires a few steps and wounds free feet. Well we may have wait a while for that because I have developed new wounds from goal one.

To get my feet pointing back to the ceiling they got these boots to put on my feet that were made from metal and plastics and padding. Well the pressure on the back of my feet caused me to get two new wounds, one on each posterior heal. So now I have to wait for them to heal in order to start with the braces. Until then they are going to work on crawling on the mat and everything to try to strengthen my hips so I can do it. It sucks.

This has been the year of the wound, and the year of set backs. It is ending though and I reasons to believe that the next year will be better than the last. It has been long and hard, and I hope that the 2009 is better than 2008 and 2007. I am not sure I can take it if it gets any worse. For the up coming year, I hope to lose the catheter, start getting bariatric surgery and be walking come 2010. I hope by this blog next year I'll be able to say, I am home, I'm walking, I'm seeing someone, and life is good. I may have set my goals a little high for what has been my life but we'll see.