“Hey Raul, sorry about waking you up.” It’s my lawyer. She’s not calling that early, it’s 1 pm. I don’t really keep regular hours anymore. I go to bed at 5 am and wake up at 2, this is early for me.

“That’s okay.” It’s instances like these I wish I could reach up and rub the sleep out of my eyes.

“I have some good news. I just got off the phone with the state’s lawyer…”

“Okay…”

“She said that the state has evaluated you at the acute level of care retroactive to August 8^th.”

“Um… really?” It was Tuesday and I wasn’t supposed to hear from them ’til Friday. Even then, it was only supposed to be a settlement offer.

“Yes, really. You can get 24 hour nursing care immediately.”

“Are you sure?” I asked, not knowing what other sounds to make.

“Yes, I’m sure.” She giggled.

She kept talking, going over details. Instead of offering a settlement, the state just bumped me into the acute level of care – the level we’ve been arguing I belong in for the past three years. By just putting me at that level, they can avoid negotiations and paying my lawyers; Their parting “fuck you” to us. Our lawyers aren’t going to charge us because they’re pro-bono, but they need the money.

I was processing everything she was saying, but I didn’t feel anything. I’d thought about this moment so many times, I thought I’d feel something.

Everyone around me has been celebrating the whole week. People keep congratulating me, saying how amazing it is. And don’t get me wrong, it is. It’s been a very long three years filled with stress, frustration and hardship. I’ve been to the hospital more times than I can count, there’s a collection of wristbands behind my bed. My parents are certainly not getting any younger and they have their own health issues. So this is good and I should feel awesome, but I don’t.

I’ve been thinking about it for a few days, trying to figure out why. At first I thought it just hadn’t hit me, but it’s been almost a week now. Now I think I just wanted more. While this is a great result for me, it does nothing for anyone else. Countless others will have to go through the same thing and they might not be as lucky as I was. They might not have awesome friends and family or great lawyers. Yes I won, but nothing has changed. I still want to change something.

I’ve been fighting battles my whole life. Whether it be with my disease or something else. I think I’ve realized that there will always be something to fight for. No matter how much I fight there will always be struggle. Because, ultimately, that’s all life is. You claw and you scratch and you push through a sea of shit hoping there’s something good at the end.

People have been asking me what’s next. Up until now I haven’t really known how to answer them, but I think I know now. I want to make it so that no one has to fight the same battle I did. I can’t solve everything, but I can solve this. I’m not entirely sure how yet, but I’m going to change the law.

Going to the hospital is always an adventure. I had made the decision to go to the ER because I had been having trouble breathing for upwards of two weeks. I would wake up with a dry throat, dry mouth and hacking up a lung. It gets especially bad on Sundays, when it’s only my mom or dad with me and my brother for 16 hours of the day. Usually, my brother has a day nurse, but he was running low on hours so he won’t get her back until next week. At that time, however, all I knew was that something was wrong and I needed to find out what it was before it got worse.

When I’m home, I get to make all the decisions. If I need suction, I just ask for it. If something hurts, I ask for medicine. I have complete control over everything that has to do with my body. It’s not like that at a hospital. At least not for me. They’re not used to dealing with someone, in my condition, that’s completely in charge of their care. So they assume that I’m not capable, that I don’t know what’s going on.

“Has he fallen in the last month?” They ask my mom as they admit me. Now, I understand that they have paperwork to do and that they have to adhere to certain procedures, but the least they could do is acknowledge that I’m capable of answering that question. But they don’t. They repeatedly asked my mom questions without even looking at me. It didn’t matter how many times I spoke up they almost always looked at my mom. After about the fifth basic question I gave up and decided to just let my mom answer everything. I figured, it was just easier to let them do what they want to do. After all, they couldn’t fuck up too bad, right?

“All right, we opened up a bed for him. We’re going to move him up to the ICU”. Said the ER nurse as she walked in. If you have never been escorted from the ER to the ICU, let me tell you what it’s like. You have a team of nurses and respiratory therapists hauling you and all your life sustaining equipment down a corridor. They take you on a humongous medical elevator only to let you out at another long corridor. The lights are all fluorescent and there’s a distinct lack of windows. It doesn’t matter what time of the day you came in because time is irrelevant. The only context in which time matters is what time you have to get your medicine. At the end of this long corridor are two remotely operated double doors that make a loud clicking noise every time they open. To open them, you have to pick up a phone that’s mounted on the wall and identify yourself to the nurse inside. I don’t think it is an exaggeration to say that it feels like you’re walking on death row.

Once you’re inside, all you hear is the constant beeping of heart and oxygen monitors. They don’t go silent based on what time of day it is. To the monitors, the sun and the moon don’t exist. All that exists is your beating heart and your vital signs.

There’s a nurses station right in the middle of the floor, but you rarely see the nurses in it. They’re always going from room to room giving medicine or checking vital signs. All that matters to them is that their patients vital signs are okay and that there’s nothing visibly wrong with them because, to be fair, that’s all they have time to worry about.

“We will take it from here” says the ICU nurse to the ER nurse. Immediately, I’m surrounded by a gaggle of people ready to transfer me from my chair to the bed. They ask my mom what the best way to do it is. When she tells them that she just needs help carrying me their eyes widen, “Are you sure?”

“Yeah” she says nonchalantly. They’re not sure what to make of it, but they figure she knows what she’s talking about, at least about that. They got me on their bed and shoved my mom aside so that they could do what they do.

“I need to turn you to look at your back, okaaaaaaaaaaaay?” Said the extremely tiny nurse in her most condescending voice. The reason they wanted to turn me was to check for bed sores on my back. They assume that I can’t feel anything so they have to check in order to cover their asses.

Now, before I go any further I need to explain something to you. There are two kinds of trach’s: cuffed and uncuffed. When a trach is cuffed it has a little balloon inside of it that helps keep it in place. Doctors and hospitals like it because it’s generally safer for the patient. The problem with them is that it makes it almost impossible to talk. Because of that, I like to keep mine uncuffed. It’s a little riskier because there is a higher probability of it getting pulled out, but, as long as you’re careful it will stay in. It’s a fair trade off for me: make sure that people are mindful of the trach and keep the ability to talk. The problem is that hospitals don’t usually deal with uncuffed trachs.

I’m not exactly sure how to describe what happened next. I know they turned me and I know that I could immediately tell that they hadn’t given my trach enough slack. I can also say that I could tell right away that the trach had come out. I wasn’t getting any air and I watched the young nurse on my right look around, confused. It was obvious that he knew something was wrong, but he couldn’t quite figure out what. The tiny nurse on my left was dutifully inspecting my back and it wasn’t until the other nurse started yelling for help that she noticed anything wrong. I watched as everyone around me panicked. All they had to do was put the trach back in. My mom knew as much and started trying to push everyone out of the way.

It’s weird, everyone around me was panicking. There was lots of screaming. Lots of, “We need some help over here”’s. I was turning blue and my oxygen was dropping. I knew I was in trouble, but… I wasn’t scared. It felt as if I was outside of the situation, just watching everyone panic. It was… cathartic. I know what you’re thinking, “You almost died and you say it was cathartic?” Short answer?Yeah. For a few seconds, I could just sit back and watch the unmitigated chaos around me. Everyone was reduced to their most primal instincts. The mother, trying desperately to save her son. The young rookie nurse, who’s really just a kid my age, screaming for help. His hands shaking as he tries to put the trach back in. He really shouldn’t be there, but he is, so he’s dealing with it as best he can. He doesn’t realize how much we have in common. The tiny, mild mannered nurse pushed aside by my mom… desperately trying to figure out what to do. And then me, just calm as a cow. Not worrying about anything but watching it all unfold. Everyone was playing the role they were supposed to, and, just for a brief second, everything seemed okay.

I don’t remember who put it back in or how it happened. All I remember is my mom hugging me tight and asking me if I was okay. I looked at her with furrowed brows as if to say, of course I’m okay… why wouldn’t I be?

I was supposed to blog about managed care today, but I’m not going to do that. Instead, I want to tell you about my Saturday.

Due to the cuts that I had to make to my nursing care, the only person with me that day was my dad. The problem with this is that my brother and I are in different rooms. That means that my dad has to run between rooms when one of us needs something. So we set up a system. When I need something, I call the house phone using skype, if it’s a real emergency, Otherwise, I speak into a baby monitor that he puts on my shoulder.

Like everyone else, I have good days and bad days. Normally, when I have bad days, I have nurses that can help me get through it. I can tell them what I need and they’ll do it. But because my dad was taking care of both of us, I had to limit what I asked for.

It started with a very loud wheezing around 6pm. Phlegm was blocking my airway. I could tell it was in my airway because of the distinct vibrations I felt every time I took a breath. I could also tell the exact position of the phlegm and I knew that suctioning (taking a catheter, sticking it down my trach and sucking the phlegm out) wasn’t going to help. The path the catheter had to take was such that it bypassed the actual position of the phlegm, which was on the bottom left side of the trach. It didn’t matter how many times my dad suctioned me (it was 6, I counted), he was never going to get the phlegm out. What I needed to do was change the trach all together. The problem was that my dad was the only person there, you need to two people to change the trach.

“Let me suction you again.” He anxiously watched the oxygen saturation monitor every time he pulled the catheter out. It fluctuated between 96% and 92%. A healthy person has an oxygen saturation of 98-100. Dipping below 95 is dangerous, as it causes a decrease in brain function. I had been dipping below 95 since 8pm. It was now 10pm and I wasn’t getting any better.

“Wait ’til eleven, then change my trach when the nurse gets here.”

“Let me change it right now “

“No, I can wait.” I knew that if he did it by himself it had the potential to turn worse. If, for some reason, something went wrong, there would have been no one there to help him. Waiting one more hour was a risky decision, but it was one that I had to make.

I don’t know how many of you know what it’s like to not have the ability to breathe properly for an extended period of time, so let me tell you. Imagine that you’re breathing through a straw. All the air that you breathe has to go through that little opening at the bottom of the straw. Now, what if that opening is blocked and you can only get half the air that you were getting before? Naturally, you are going to struggle, but there’s nothing you can do. You just have to wait it out and hope that it doesn’t get any worse. So that’s what I did. I sat, in my bed, wheezing and intently staring at the clock. It was 10:50 pm, but it might as well have been 8 pm again. It felt like it’d never end. I watched as the clock turned from 10:58 to 10:59 and finally to 11:00.

“Are you ready to do this?” said my nurse as he walked in. My dad had told him what was going on as he frantically collected the supplies to change the trach. They laid me flat and I watched as huge chunk of phlegm came out with the trach. I was instantly better, and felt a twinge of pride for having made it through.

“Quick, take a picture.”

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Raul Carranza is a full-time activist and college student (when he has the nursing hours).  When he is not blogging about the evils of budget cuts and private insurance, he competes in Strongman bouts and is a tactical planner for the A-Team.

Last week I had to let one of my nurses, Laura, go. We both saw it coming, just… not this soon. We had a plan that would have had me covered until June and would have allowed her to stay. Needless to say, that plan backfired and now I’m down a nurse. I’m not going to go into details as to why, mainly because it doesn’t really matter now. What matters is that, what I’ve been talking about for months, has finally happened. My nursing have been cut. But that’s not what I want to talk about. Instead, I’d like to talk about what Laura did for me, not only as a nurse, but as a friend.

Laura worked the 3-11pm shift. I remember when I first came back from UCLA and she was working with my brother. At first it didn’t seem like we’d get along well, at least not to me. The agency had sent a different nurse, but the prospect of training another nurse from scratch was not appealing since I had just gotten home from LA where I had gone through a carousel of nurses. So I made a deal with my brother: You take the new quiet, shy nurse and I’ll take the one that doesn’t shut up about politics and Battlestar Galactica.* She had been working with my brother, so she already knew the basics of how to take care of me.

During the course of your life you make a lot of decisions. Sometimes those decisions seem small and sometimes they seem huge. The funny thing is that, every now and then, the decisions that don’t feel like a huge deal at the time turn out to be completely life altering.

“I’ve never seen anything like it before!” Laura said one day, her eyes wide with excitement and hands wildly waving around her head. “There’s so many people! All over the country. It’s amazing. ” That was the first time I’d ever heard about the Occupy movement. I’d never seen her so excited.

I admit, I wasn’t really very political before Occupy. Sure, I had my views and opinions, but I didn’t really care for politics. I didn’t see the point in getting involved. But there was something about the way she talked about it that intrigued me. Maybe it was just the right idea at the right time, maybe it fed into my anti-authoritarian streak. Whatever it was, I knew I wanted to be a part of it.

“Are you sure you want to go today?”

“Yeah.”

“But it’s raining.”

“I can see that.”

“Okay…” She said as she opened the car door.. I’d come to know that ‘Okay…’ quite well. It usually said, ‘I can’t believe I’m doing this right now’. This time, though… this time it said, ‘I’m going to walk three blocks, in the rain, to an organizational meeting for an international movement that has yet to start… with a person in an electric wheelchair that depends on an electrical machine to survive’. The ridiculousness of the situation was not lost on me, but a little water never hurt anyone (my equipment is very well protected) and I hadn’t showered that day anyway.

The challenge for me in the rain is not the actual rain itself, but the cold that comes with it. Because my body generates less heat than the average person (due to less movement), I’m extremely sensitive to the cold. It stiffens my muscles and makes it impossible to move my thumb, which I use to control my chair.

No thumb = no chair = no moving = stuck downtown in the rain.

Still, I felt confident in our ability to get down to the meeting. And we did. It took us a little longer than most, but we got there. We were soaking wet, cranky and sat through a meeting where people argued for 3 hours about when to have more meetings and how to decide when to have more meetings. But the point is she got me there.

As frustrating as that meeting was it still piqued my curiosity. My curiosity led to this, which led to this and then this.

Looking back, I can’t believe she actually did that. Any other person would have told me to fuck off and, you know what? I would not have blamed them for it. Laura consistently went above and beyond the call. She didn’t do it for for the money, because the money was shit. She did it because she cared. She did it because she wanted to see me happy. That’s a rare fucking quality in this world.

I don’t think we’re going to work together again. Not that I wouldn’t love to have her back, because I would. But even if I do get my hours back, it feels like she’s moving on. That isn’t necessarily a bad thing, it’s just the way it is. She’ll obviously still be part of my life, a big part, she just won’t be here everyday.

* To be completely fair though, the reason she was talking about Battlestar Galactica was because I was also talking about it.

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Raul Carranza is a full-time activist and a college student (when he has the nursing hours).  When he is not blogging about the evils of budget cuts and private insurance, he competes in Strongman bouts and is a tactical planner for the A-Team.

Dear Glenn Beck,

I’m disabled and I think you’re hilariously wrong, as usual. Let me tell you why.

You recently did a segment on your radio show about assisted suicide. In it, you lambasted a mother that went on Dr. Phil and talked about wanting to euthanize her two mentally disabled children.

Now, I don’t know the circumstances of this case, I don’t know what kind of condition they’re in or how much they’re suffering, so I can’t comment on that situation. What I can comment on is the stand you took against assisted suicide. You said, “Suicide is never an option”. Yes, it is.

I’m in a wheelchair. I can’t breathe on my own, I can’t move and I can’t do much of anything without assistance (I’m writing this using my right thumb and a virtual keyboard). What I have to go through in my daily life is beyond your comprehension. Yes, you have a disabled daughter and yes, she faces great challenges too, but you personally have never experienced the challenges that we have.

Our medical benefits are being slashed at an alarming rate. Mine have already been cut to the point where I can’t live a life independent from my family. Everyday is a struggle to have decent life. You are telling me that, should I ever decide my quality of life was not acceptable and didn’t see it getting better, that I can’t decide to end my suffering. You are telling me that, because it offends your sensibilities, I can’t exercise the only power I have? Sorry, that just won’t fly.

You don’t get to make that decision.

You tried to frame this as the government trying to euthanize the disabled, but it’s simply not. This is about the government giving people the freedom to do what they want with their bodies. Yes, sometimes this involves decisions that you don’t agree with , but that’s freedom and that’s democracy. As long it doesn’t infringe on your rights you’re just going to have to deal with it. Life is full of tough and ugly choices. People like myself have to make them everyday. You might not agree with those choices, but to deny us that option is inhumane.

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Raul Carranza is a full-time activist and a college student (when he has the nursing hours).  When he is not blogging about the evils of budget cuts and private insurance, he competes in Strongman bouts and is a tactical planner for the A-Team.

<— Part 1

There are two types of medical insurances: government and private. With government insurance such as Medi-cal and Medicaid it’s easier to get medication and equipment that you need. Don’t take this to mean that it’s easy, it’s just easier than private insurance. Because private insurances are for profit they have to think about money before health. This is the fundamental problem with for profit insurance companies.

The biggest for profit insurance company right now is Molina Healthcare. They have managed to finnagle their way into Medicaid and Medi-Cal. They sued the government in every single state and forced them to hand them the contract to those programs.

Molina is the company that has taken over my healthcare. They seem innocent enough. When you go to their website you’re confronted with the image of a smiling mother and child. However, not one week after being switched over to them, I’m already receiving phone calls asking for me to change my doctor. Of course, I told them no. They would like to switch everyone to their doctors and their pharmacies. There are two issues with that:

1. The doctors that I have right now are some of the very best in San Diego. I already have an established relationship with them and they know my needs. Changing doctors would mean starting over with someone that is already overworked and extremely stressed out. The quality of my care would inevitably go down until I built that relationship with the new doctors.
2. They just don’t care. The doctors that they want me to have just plain don’t care. It’s not because they’re bad people or anything like that, but they see so many patients a day that it’s impossible for them to care anymore. No human being has the capacity to see so many people and still give them the care that they need. There are exceptions, of course, but by and large this is true for most of the medical field.

When they switch people from one doctor to another they are, inevitably, lowering their quality of care, whether they want to admit it or not. Most people don’t have the time or energy to stop them from changing their doctors. They will do what they say because of some perceived notion that Molina has their best interest in mind or that it’s useless to resist because it’s going to happen anyway. The people at the top know this and use it to get what they want and that’s my core problem with Molina.

When you are entrusted with people’s health you need to make sure that that is your number one priority. The fact is that Molina doesn’t have health as its number one priority and that is something that eventually will get people killed.