Archive for June 2012

How I Met Bob Filner

June 26, 2012 Blog No comments

“Do you want to come to Bob Filner’s fundraiser?”

“Um… yeah. Where is it?”

“Downtown, at Jim Miller’s house, he’s a teacher.” I’d been trying to bring my issue to my elected officials, my friend Sandy was helping me with that.

Going to someone elses house is always iffy. I don’t know if their house is accessible or if I’m just going to waste a trip. Still, that’s why we have a portable ramp. If I got there and couldn’t get in then, at worst, I’ve wasted some gas.

Laura was going with me. The two of us had told my story so many times before that all I had to do was give her a slight nod and she would just go. She would say exactly what I wanted to say, exactly how I wanted to say it. In fact, I trusted her so much, that if I knew we were going to be in a loud place where it would be hard to hear me I would tell her to go ahead and ad-lib for me. We were like one of those door to door sales teams, except instead of bibles we were selling me.

“We have a problem.” she said, “There’s about six steps and then a porch followed by another step. The portable ramp can maybe get up the stairs, but it can’t get you up the last step. Someone from inside brought out this small ramp to kind of connect the two, but there’s a small gap between the two. I don’t think it’s stable… What do you want to do?” She looked at me with eyes that said, ‘For the love of all that is good and holy, please don’t make me do this’.

“Uhh…” On the one hand, the biggest politician in San Diego was going to be in that house and I had a chance to get uninterrupted one on one time with him. On the other, there was a very good chance that I would wildly careen off the make-shift ramp, tilt over and tumble down the steps. But this was an opportunity to get my issue to someone that had power. I wasn’t going to let fear of painful death stop me. Besides, of all the horrible ways to die, tumbling down the stairs isn’t all that bad, “Fuck it, let’s do it.”*

So I sauntered over to the front of the house and took a look at what I was facing. My reaction can only be described as follows:

There were a few problems that I had to overcome. First of all, the incline was way too steep. It’s not that my chair can’t handle it, it’s that it gets harder for me to control the chair going up hill. Secondly, the ramps are about 2 inches wider than my chair, so I had absolutely no room for error. If I veered even a little bit, I was screwed. And lastly, that damn gap between the two ramps was dangerous. It wasn’t more than a few centimeters, but, because the two aren’t connected, they could do whatever they want. They weren’t exactly going to stay motionless the whole time.

“Hey, I’m Maurice, let’s see if we can’t help you get in there.” A very tall older gentleman with salt and pepper hair and a slicked back pony tail walked up to us, “I’ve been involved with the disabled community for 20 years, tell me how I can help.”

“Well, if you could stay behind him to make sure he goes straight…” Laura trailed off.

“Here, Jim will help out.” Another man with a pony tail* and a beard that said, ‘There’s no way I won’t survive the nuclear holocaust’ came out the front door. It didn’t register then, but that was Jim Miller, the guy throwing the fundraiser. He bent over, grabbed the front of the chair and signaled for Maurice to grab the back, “Alright, go on three.”

What? Are you sure about this? I changed my mind.

“One”

That ramp has no structural integrity.

“Two”

Then again, I can’t say no now, I’ll look like a pussy.*

“Three!”

I’M COMING TO YOU, BOB FILNER!

I pushed forward as fast as I could . I figured that if I went fast enough, gravity wouldn’t matter as much and it would be over quicker. Kinda like ripping off a band aid. That logic was quickly proven faulty when we all realized that I had veered slightly to the left.

“Stop! Stop!” I heard Maurice scream. So I did.

“Alright, let go and let him straighten the chair out.” I heard Laura behind me. She tried to sound calm, but the shaking in her voice gave her away.

I stopped and assessed the situation. I had made it half way up the first ramp, but I still had to clear the gap between the two ramps. So I straightened out the chair, closed my eyes and gunned it. It only lasted for a couple of seconds, but it felt like much longer. I felt the first ramp tilt forward and the second ramp tilt up as the weight of my chair transferred from one ramp to the other. I held firm, opened my eyes and watched as I cleared the gap and rumbled into Jim Miller’s front door.

“Holy shit, I’m alive” I said, as Laura ran up behind me. She looked at me as if to say, ‘Of course, why wouldn’t you be?’ As if she wasn’t as scared as I was..

Maurice and Jim ran up to me, “Let us know when you’re ready to leave.” they said as they disappeared into the kitchen.

“So, you want to talk to Bob Filner?” asked Laura.

“What? Right now?”

“Yeah, he’s right there.” she said. I looked around the room and saw an older dude talking animatedly with a glass of water in his hand.

Surely that can’t be him. Aren’t politicians supposed to look less human?

All I saw was someone that could easily have been my older uncle. And he was right the in front of me, all I had to do was go up to him. It felt so strange. These people are supposed to be utterly inaccessible and yet here I was right in front of him.

“So… You want me to bring him over here?”

“Uh…Wait for Sandy.”

I had no idea what I was doing and I was a little afraid that I would blow it somehow. I dunno how I could have possibly blown it, Laura was going to do all the talking.

“He’s right there. I’m bringing him over.” I’m glad that she didn’t listen to me because she told my story perfectly.

“That’s horrible.” He said, “If there’s ever anything I can do, let me know. If you want me to call a press conference…anything…don’t hesitate to contact me.” He handed us a card with his email address and excused himself to mingle with the other guests. We spent the rest of the night doing the same and, after a few hours, decided to leave.

“Let me get Maurice and Jim.” I had gotten in up the ramp, but getting down would way more dangerous. If only for the fact that I would be going down a 45 degree incline and my body would tilt forward. If we weren’t careful I could have actually fallen out of the chair instead of with the chair. That means the my trach could actually come out.

“Are you ready?” I had Jim and Maurice holding the chair steady while Laura had to her hand on my chest to make sure I didn’t do my best superman impression and went flying out of the chair. I slowly inched down the first ramp and got about halfway before I lost my patience and decided to just gun it down. I’m not going to lie, it felt a little bit like space mountain. I heard the ramps clank together as I made it back down to safe ground.

Laura shot me a ‘You’re fucking crazy’ look and I shot back with a ‘Yeah, but I met Bob Filner, didn’t I?’ look. I had risked my life to do it, but no one has ever gotten anywhere without a little risk, right?

*I feel like that’s a good enough justification to do pretty much anything

*This has led me to conclusions about pony tails a) they’re awesome b) they most definitely make you more altruistic.

*This reasoning is used by men to justify 99% of all stupid decisions.

On Managed Care — 3 — Upchuck

June 19, 2012 Blog 4 comments

“If you want to continue seeing any of your doctors at UCSD, you’ll have to switch insurance from Molina to HealthNet.”

“Uh… what?” My nurse asked the receptionist at the Doctor’s office.

“Unfortunately, UCSD doesn’t take Molina. All you have to do is call Medi-CAL and tell them that you want to switch providers*”

I was at the doctor because I’ve been having reflux issues. Whenever I eat, I can feel the food go from my stomach up to my chest. Normally, this isn’t too much of a problem for people. All you have to do is take an antacid and you’re good to go, but, because I eat through my stomach and my food is completely liquid, this poses a huge health risk. The liquid travels up my stomach, through my chest and into my lungs, giving me breathing problems and really bad chest pains. We had agreed with the doctor that I was going to go on an antacid twice a day. It wasn’t going to solve the problem, but it would hold me over until they can take me into surgery and tie my stomach up. It’s not exactly the most ideal solution, but it’s better than what I’m going through right now.

“Thank you for calling Medi-Cal, you’ve reached the department with-the-really-long-name-I-can’t-remember. My name is Daisy, how can I help you?”

“Yes, I’d like to switch my provider from Molina to Healthnet.”

“Sure no problem, it will take 15-45 days and you will receive a letter in the mail notifying you of this action.” I may or may not have abridged that conversation to cut out the part where we were put on hold for 20 minutes. And the part where she made everything more complicated than it had to be.

In the meantime, I had to get my antacid. At least I had that to hold me over, “Oh… Your insurance is not approving it for twice a day. They are only approving it for once a day.”

“Do you know why? ” My nurse asked the pharmacist.

“No, I’m afraid not.”

“What else can we do?”

“You can always pay for it out of pocket.”

“And how much is that?”

“$265” I could hear her wincing on the phone.

I looked at my nurse and shook my head as fast as I could, “Oh, nevermind then. Thank you.”

I couldn’t get my medicine and my reflux was only getting worse. Eating became a chore instead of something that was fast and easy. We ultimately found some antacid that my brother had and used that, but it wasn’t enough. I could still feel food coming up through my airway as if it wanted to suffocate me. I needed to do something lest I end up back in the hospital. So I did, I brought out an old stand-by: the feeding pump.

The feeding pump feeds me at a set rate for a set amount of time. The problem with it is that it’s extremely sloooooooooooow. Like, a turtle running a marathon. Sure, it’ll eventually get there, but everyone might be dead by the time it does. What used to take me 5 minutes now takes all day. If I want to go anywhere I have to meticulously plan my feeding schedule. How long will I be gone? Will it cut in to my eating time? If so, how do I compensate for it? It’s like a fucking algebra problem just to do anything fun.*

As of right now, we’re waiting for the insurance to switch so that the doctor can run a test to see how bad the reflux is. After that, there’s a very good chance that I’ll go into surgery and have the doctors tie my stomach up. Hopefully HealthNet approves it, but I have a sneaking suspicion that it’ll be a battle. The government keeps trying to say that managed care will save money. They’re right, but not because it’s a good program. It’ll save money by denying needed medical care to those that don’t have the energy or health to argue with them about everything. And what they don’t want you to know… What they will never ever say is that, in the end, it’ll save money because people will die.

*Medi-Cal has contracted out Molina and HealthNet

*I may consider drawing up an equation for it, I do kind of love algebra.

One

June 12, 2012 Blog No comments

I’ve been in the hospital three times in the last three weeks. When I used to go as a kid, my parents had all the control. They, of course, consulted with me on every decision, but they always had final say. Now, when I go, I have final say on everything. And I’m slowly realizing how much doctors and nurses underestimate me. How, after they take one look at me, they make a laundry list of assumptions: I can’t talk, therefore my parents make all the decisions. I can’t move, so obviously I can’t feel anything. I look feeble, so I am.

Every time I go it’s a struggle to have them take me seriously. I can see it in their faces. They try to pretend that they are listening but, their actions betray them.

“How does he usually get his feedings?”

“I take 300ml 4-6 times a day with 100ml of water.” They nod along very slowly and then turn right back to whoever is with me as soon as I finish talking. It’s as if nothing I said made any sense. I’m just a crippled kid that’s too sick to have any semblance of a rational thought.

“Does he get bed sores?”

“Can he be off the ventilator?”

“How does he get transferred?”

Always “he”, never “you”. They don’t act like I’m human.

***

On my second hospital visit, the ER doctors ordered my very first CT scan. I’d never done one before, so I had no idea what to expect.

“Can I stay with him?” asked my dad as the doctors wheeled me into the room. There was a large tube shaped machine in center of the room. It looked like something out of a Sci-fi series. I half expected to get transported to Mars where an alien would tell me the meaning of life.*

“No, you can wait outside.” said the nurse.

“But you won’t be able to understand him.”

“Don’t worry, we’ll take good care of him.” Apparently, it doesn’t matter that they can’t understand what I’m saying. As long as they can see my vitals, everything is fine. Never mind that I know more about myself than they do or that I can tell them what’s going on without them having to waste time figuring out if something is wrong. That doesn’t matter to them. They obviously know better than me.

So my dad went outside and they slowly wheeled me under the alien transportation machine while being very careful not to pull on my IV or trach. The machine whirred to life and made lots of whiny noises that gave me hope for my alien theory. I watched it flash and spin and wondered if this was all there was to the procedure. It wasn’t.

I saw one of the nurses walk up next to me, grab my IV and inject what felt like a very hot liquid into my vein.

Oh, you’re not going to tell me what that was? Thank you.

He casually walked away as the liquid coursed through my arm and spread to my chest. The initial hotness of it turned to a searing burn. It moved from my chest to my other arm and pretty soon engulfed my whole body.

I imagine this is what being on fire feels like.

My chest tightened, my breathing got shallower and my heart started racing. Calling the nurse would have been useless because she couldn’t hear me anyway. And even if she did hear me, she wouldn’t be able to understand me. I wanted to freak out. I wanted to scream, “I think I’m dying here guys!”. But that wouldn’t have helped anyone.*

“Are you okay, honey?” The other nurses’ voice blared through the intercom.

“Uh… no.”

“Okay, you’re doing great, honey. We’re almost done.”

You clearly understood exactly what I said. I get snarky when my life is in danger.

The machine kept whirring and I kept hoping that my heart wouldn’t explode. The burning slowly subsided and they pulled me out.

“You did great! Are you feeling okay?”

“No, my heart rate is really high and that medicine you gave me burned a lot.”

She looked around confused to the doctor and technician. “Let me get his dad, I can’t understand him.”

I’m right here, lady! I rolled my eyes, but she didn’t see. She came back in with my dad, “I can’t understand him.”

I repeated what I said to my dad and he repeated it to her, “Oh yeah that was the IV contrast, it helps the CT machine see everything. He did have apnea and an elevated heart rate, but it wasn’t too bad.”

It felt pretty bad.

I was scared, exhausted and I had been throwing up for about 8 hours, so I let it go. I wasn’t about to make a show about something that wasn’t going to affect me right then and there , but this should never happen to anyone. If I was any other patient they would have had the decency to tell me, “Hey, we’re injecting your vein with this thing that’s going to make your body feel like you’re on fire and might make you feel like you’re dying”. They might have the decency to talk to me instead of at me. But they don’t. Because, to them, I’m just a frail crippled boy.

*It’s 42, I don’t need aliens to tell me that.

*Pro-tip: Freaking out doesn’t help a high heart rate.