Friday, April 17, 2009

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.

Sunday, April 12, 2009

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.

Sunday, April 05, 2009

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,, and 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.