Jul
17
2012

What I’m watching

Note: You may need to disable your Ad Blocker for the embedded clips below.

Last week, one of my favorite documentary programs started on ABC. Terence Wrong brought us Hopkins 24/7, Boston Med and now NY Med (Except for Hopkins, you can watch them all online). The show follows Doctors, patients and hospital staff around. The first episode brought us a woman that suffered a seizure as the result of a brain tumor and the surgery to remove the tumor. Another patient needed a heart procedure and another gentleman with cancer. Along with some humorous moments. I also found a Nurse that is a candidate for my future wife.

I hate hospitals, but these documentaries have taught me a lot and I can feel the emotions of these patients. You also kinda understand why doctors and nurses have to be dicks sometimes. If interested the show airs for 7 more weeks on ABC at 10 PM ET. I highly suggest watching.

Here’s the preview:

Another show I’ve been watching is Push Girls on the Sundance channel. It’s a reality show about a group of disabled women. It’s pretty much your typical reality show, but the subject obviously makes me interested.

It may not be the greatest show, but the emotions feel legit. None of the women were born disabled and in that regard I can’t relate to them. They still deal with issues that I’m very familiar with like people surprised that a person in a wheelchair can have fun, the occasional hope for a cure and family being too protective or family not fully grasping the disability. At one point a Mother actually said she wished her daughter would’ve died instead of being paralyzed. How can a person possibly live a fulfilling life in a wheelchair?

Push Girls airs on Sundance Mondays at 10 PM ET. They’ve also done some weekend marathons. It’s also available on iTunes, but I’m not sure it’s worth $2.99 per episode for 20 minutes in HD.

Here’s a clip:

I plan on relaunching this site soon. I’m writing some material ahead of time and coming up with ideas for posts. I wasn’t fully prepared to do a blog when I started this one and don’t want to make that mistake again. I thank everyone that has given my positive comments about this blog. Hopefully this piece helps me ease back into doing what I had set out to do originally. Share my life experiences and offer my viewpoint on subjects like news stories and TV shows.

 

Nov
30
2011

Test post

Just checking to see if the blog will update with this app. Sometimes watching TV I get an idea for a post, but at the end of the show I forget.

This way I can at least start a draft. Got to love technology.

Nov
19
2011

Wasted Time

If I died today and wrote my own obituary their would only be two words in it. “Wasted Time”

I have had all the time in the world and my only accomplishment is that I’m not dead. I haven’t done a thing to make sure I stay alive. I don’t eat healthy. I don’t exercise. I don’t keep up with my doctor visits and yet I’m still here. It’s as if I have a death wish, but no one wants to oblige that wish.

When you’re in high school their is this part of you that is confused. Throughout your life someone has made decisions for you. The rules were set and you went to school everyday, but then that day comes where you have to decide what to do with the rest of your life. For me, at age 38 I still have no fucking clue. I’ve used my disease as the excuse. I was supposed to be dead by the time I turned 18, but I’m not.

College never seemed possible to me even though at that age there was still a lot I could do. I was able to dress myself, cook for myself and was still able to transfer myself. As I struggle now to get my arm on the armrest of my wheelchair or move my hands, I regret a ton of shit.

There is no manual on how to live life for anyone. I wasn’t any different from anyone else. What I needed was for somebody to tell me that and no one ever did or if they did I didn’t hear them.

I did go to community college when I was 19 and those were the best years of my life. Not because of my education, but because I felt alive on campus. I’d talk to people and make them laugh. I’d flirt with girls and they didn’t runaway in horror. The problem was that I couldn’t do anything off campus. It was just go home. I couldn’t go to parties I was invited to or go on dates that I could have. I just went home while others worked, partied or fucked. The depressing part to me is that if I had my own apartment then or the knowledge of the help I could’ve had then my story is completely different. That doesn’t fix anything now. That’s just pitying myself.

Once I moved at 29 my life got better. I finally had freedom and started to think maybe I could make something of myself. Around 2006 I started thinking of going back to school. I did everything and all I had to do was register for classes, but when the only courses I could start with were English II and a math elective I didn’t register. All the courses I wanted to take for my major were in the fall semester and I was registering for spring 2007. Did I chicken out? Was I scared or just not ready?

That was the last thing I tried before I got sick. Since 2008 I’ve just been battling to get that freedom back. Truth is I won’t get that freedom back and I’ve given up my dreams.

Am I fixable? Can I finally find something to accomplish? I don’t know. Hopefully writing this will wake the part of me that is dead back up. Then again that’s what I said when I started this blog that I’ve neglected. I’ve tried to post stuff, but it always turns to whiny or comes off like I’m seeking pity. I just wrote the truth tonight and I posted it. That’s a start. At least now you know why my grammar sucks.

Nov
02
2011

Update

This blog may look dead, but the owner isn’t. I promise new content is coming. I will announce when new content returns on Twitter and Facebook. Thanks for visiting.

May
20
2011

I’m Free!

September 24th, 2008 – May 12th, 2011

The hell is finally over. The agency is gone and I can finally take a piss without it being recorded.

To say I never wanted nurses in the first place would be an understatement, but I would have never been allowed to come home without them. Not because I needed 16 hours a day of nursing, but because whomever the powers that be didn’t think I would be safe.

Before I got the flu and got my trach no one ever thought I was in danger. I had my attendants get me up, shower me, cook for me and put me to bed. There was never a moment that my life was in danger at home alone. The trach did require some special training, but my sister and friends were all able to do it.

Why did I need to go through 5 months trying to get this nursing setup? I don’t know. The rehab place would not let me go home if I didn’t have 24 hour care. I was forced to spend 4 months in a nursing home waiting for the paperwork to go through. If I could walk I would have been home after a few weeks. I was disabled so obviously I wasn’t capable of making a decision.

More to come. Not a writer and I’m struggling how to word some parts.

Mar
20
2011

Memories Suck

Was in a perfectly good mood today. I was bored from being stuck in my apartment again, but I’m used to that and it will end soon.

The moment I got my emergency tracheostomy isn’t the trauma that scared me the most. It was scary though. I was in the hospital for the flu and had a panic attack when I couldn’t breathe. I remember shitting and pissing myself, but then I blacked out. I woke up connected to a ventilator eventually. That freaked the hell out of me.

The traumatic event happened a few weeks later. I felt a lot of junk in my lungs and I needed a suction to get it out. I told the nurse that I needed a suction and she told me “No, your oxygen sat is 97% and you don’t need one” and she left the room. Now I know my body and knew I didn’t feel right. Moments later my sat started dropping rapidly. An alarm starts going off when you drop to around 90%. I dropped into the 80% range and still no nurse came. By the time the nurse came in I was under 70% and struggling to breathe. I thought I was going to die as I dropped into the 50% range before they finally started the suction. Eventually we got everything out and I was back in the upper 90′s.

It all happened so fast. I remember trying to get help and just seeing the nurse chatting away at the desk. After the craziness they tried to blame it on me. Say what? Then another nurse that wasn’t even around started backing the story of the nurse. I don’t even remember what they said because it was so obvious that they were just trying to cover their asses.

I never sued or anything because what was the point? The nurse was just a cunt and I spent 7 months between the hospital, rehab and nursing home. I didn’t need to add months in courtroom’s and lawyer offices. I don’t even know if I had a case, but considering they tried to cover their ass it’s fair to say they fucked up.

Today I wish I did sue. This happened 3 years ago and I’m still stressing about it. It still depresses me, because in that moment I thought I was going to die.

Mar
19
2011

Appreciation

I have to say that I really appreciate my aides.

I’m down to only having nursing overnight. Used to have nurses 16 hours a day and now only 8. My aides don’t have any obligation to fill an empty nursing shift, but they always do.

The nurses make almost 3 times as much as my aides and never fill in when the other calls out. I don’t even get an attempt by the agency to fill the shifts. Tonight’s call off happened on Wednesday and the agency just e-mailed me and said my nurse can’t work Saturday night. My aide was around when I got the e-mail and offered to help immediately.

My one nurse is quitting in a few months and I’ve been stressing myself on how to fill it. Do I just dump the nursing altogether? Do I trust the agency to find a reliable nurse? These questions have been driving me crazy.

I think for my sanity I have to dump the agency and the nursing. I just get too little from my nurses. The agency has a bunch of dumb rules. They have to fill out paperwork for everything I do. They are here for my vent care and not to keep track of what I drink and how much I shit.

I’ve also been disrespected and judged by my nurses. Maybe it’s because these aides worked for me before I got my trach and just couldn’t walk. They know I’m not helpless and am a very private person. More than that I feel like my aides actually care about me and respect me. I never got that feeling from my nurses or agency. The agency always says that they care, but actions mean more than words. If you care then I wouldn’t have to worry about filling these shifts myself. Also my aides never call off at the last minute unless they have a major reason. I had an aide crash her car and still try to come to work this winter. Come to think of it, I’ve also had other aides in the past that had accidents and still came to work. That shows people that truly care.

For the nurses it’s about the money. For my aides it’s about my well being. For me it’s about my life.

Feb
16
2011

I’m still alive!

There really isn’t much to say when you are stuck inside during the winter. Thanks to people on my personal Twitter page I’ve come up with some ideas for stories here.

If you follow that Twitter page then you know that sometimes I just can’t shut up. I’m sure it annoys people at times, but it’s really the only way I’ve interacted with people during these last few months. I must say I am grateful for that because it really helps kill time.

I also haven’t written because I don’t want to come off as whining here. The nursing stuff still sucks and I have to find new people soon. That has been a big load of stress on my shoulders. I also haven’t done anything, but that beats not being healthy. During flu season I think it’s wise to try to avoid risks. Since I got home I’ve had no setbacks so I’m doing something right.

In about 10 days it’s going to be the 3 year anniversary of getting my trach. I plan on explaining the chain of events that happened here. It’s very hard emotionally for me to discuss it, but hopefully I’ll have the mental strength to write it. I’ve been depressed lately and I hope sharing will be therapeutic.

The good news is that winter is winding down. I’ll get to start living my life again and find things to bitch about on this blog. That I look forward to.

Jan
01
2011

I have to fire my nurse

I can’t take it anymore!

It’s amazing how a person that works for me only 3 days can make me an insufferable dick. I’m grumpy around everyone because of this person.

Last Sunday we had snow in the forecast. I was reading and talking to other people talking about alternate modes of transportation to work. Whether they worked in a warehouse, office or supermarket. All important jobs, but not quite as important as a nurse that is responsible for putting someone to bed and making sure they stay alive. So what does my nurse do? She calls off two hours before we have any snow.

The sad part is I expected this. This is the woman who called off because of a dusting once. She also called off two days early once expecting a “monster” storm. Think it ended up snowing like 3 or 4 inches. We obviously have different descriptions for the word monster. Unfortunately for me my backup plans fell through this time. The aide that was going to cover for her ended up getting in an accident. She couldn’t make it and she couldn’t stop apologizing. She was in an accident and still felt she left me done. My nurse? She comes in a half hour late last night and never said a thing. To be honest, I don’t recall this woman saying “I’m sorry” once since she started working for me.

I did end up getting in bed that night. There are people that care about me and know I can’t stay up all night in my chair. My nurses make twice as much money and do less work than my aides, but this wasn’t about money. It was about my safety. In the hospital environment the aides do more dirty work than the nurses, but for a home nurse it is different. They are responsible for cleaning my dishes as much as my aides, but this nurse doesn’t even wash a fucking glass.

The question here is who is ultimately at fault? The nurse that calls off or the agency that allows the nurse to call off and never makes an attempt to fill the shift? I hired the agency for I had coverage. I hired them for I was taken care of. The agency was hired for I didn’t have to frantically waste a Sunday night trying to find coverage, but there I was! The agency will get more discussion here in the following weeks.

My problem now is who do I find to fill this nursing shift? This is why I’m so angry because I don’t have a clue on a replacement. People aren’t exactly knocking on the door to work an overnight shift during the weekend. I asked the agency for a new nurse over 4 months ago. I told them that she was always late, not reliable, not friendly and that she slept on the job. The agency still hasn’t replaced her. So it’s up to me to find people again. Thanks for nothing agency. Wish switching agencies would work, but I’ve learned that they are all the same in the end.

I need to get rid of her though. It’s not healthy for me to be this stressed.

Happy New Year. :(

Dec
23
2010

Thank you

I don’t have many readers, but I appreciate the readers I have.

I’d like to say I don’t care about getting more hits, but I do want to get some recognition out there for those of us that happen to be disabled or have to deal with someone who is.

If you have a blog involving this subject or read other blogs then I have a request. Post the site and I will link to it. I plan on looking some sites up, but feel free to help.

I also welcome any suggestions. I’ve done websites before, but never something so personal.

Once again, Thank You.

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