Month: June 2016

So, I had to realize something about myself today. I’m powerless and afraid and I can’t do a fucking thing about it. I fight it, of course, and that causes even more stress and anxiety on top of everything else. All I can do is fight. It’s natural. These little monsters can’t take me completely down. I can’t let them. I want to have something of a life, especially here in Phoenix, where I do feel better. But, I fear when they’ll come. I know they’ll come.

Every time I go into Target to get my drugs, I have an attack. I don’t know if it’s the lights, someone’s perfume or the air pressure. Now I send my nephew because I’m afraid I’ll have an attack. I’m afraid I’ll have an attack on the way home. That’s happened  before in Bilbao, Spain. It wasn’t pretty. I tried to stop the attack with a RockStar, but it failed. Only RedBull works for me. I was writhing around on the sidewalk and people walked past me looking at me as if I were possessed. Eventually, I fell asleep on one of the benches outside the store after the attack subsided. Happily, no one bothered me or robbed me.

Beyond the now scheduled attacks, I’m powerless to stop the attacks that come in between. The frequency depends on the day. I’ve been kinda lucky since leaving Mayo this last time. At first, I was getting only about 3 attacks/day and they were low, even though I left the hospital with a high pain level. I even had one day when I only had one attack. Notice I said one day. Now the little monsters are setting up shop. Today, they’re coming at every two hours. The severity is still between 4-6. That’s my current baseline. A month ago, two months ago, my baseline was a happy 3-5.

These unwanted guests really do wreak havoc. They keep my body at high alert. I’m never able to fully rest. I have to take more tranqs than Carter has liver pills just to sleep, only to be woken up every two hours. I sucks and it fucking sucks completely, but it’s reality. I can fill a damned sharps container in a month and collect them like stamps bc I’m too embarrassed to take them to the Fire Department. My nephew will do that too, unless Martha’s going there on her visit. The injectables work just enough to keep the pain in check, but I have to take them with other drugs as well to make them work. I have two drawers full of meds and two different pillboxes. I’m 47. It’s sad.

However, like I keep saying, there’s not a fucking thing I can do about it. I have only my sense of humor and intellect left. My balance has left me. I couldn’t pass a DUI test if I wanted to. My social life is non-existent. My friends are reduced to online relationships bc I have to cancel plans often and stay at home. No one wants to deal with that.

But, FUCK IT, I have a loving husband, a family and circle of friends who love me. I live in a gorgeous, warm, desert climate. I may have to take an entire pharmacy of meds to keep me going, but I’m still alive and fighting. I’ll keep fighting the fucking monsters as long as I can. I am powerless and afraid, but I’m also strong-willed. The motherfuckers will not win. Besides, the alternative is impossible.

 

Cluster

Honestly, did he think I was going to leave him alone or something? Really? Of course I knew about the nerve blocks and the Botox treatment he was getting that day. How could I not? I’m part of him. I enjoy the fact that he thinks he can quell my rage. I’ll give him the migraines. I don’t care about the migraines. I am Cluster. I don’t just make him sick or dizzy or see zig-zags, I bring him to his knees in the middle of the street howling in pain for as long as I want like I did in Bilbao. That was real run. No one knew what what was going on, so they avoided him like the plague. At least no one robbed him when he finally fell asleep on the bench.

It’s a game for me. One day, I’ll hit once or twice and leave him alone for the rest of the day. Another day, I’ll hit him every two hours. I hit hard too. Sometimes, he doesn’t realize the amount of pain that he’s actually in until his other systems kick in and shut him down. That, I don’t like. I don’t like that he has an auto protect feature that puts him to sleep if I hit too hard, too long for too often. But I digress.

“Your body’s resisting the super-orbital nerve block Michael.”

“It doesn’t feel the same as it did last time. It’s not going to the right place. It’s going under my eye and into my jaw and cheekbone” He replied.

The nurse continued to pump the lidocaine and Botox despite the fact that they knew something wasn’t right. I guess she hoped for the best. I was the best, unfortunately for him. I decided that there would be time for fun later, so I left him alone, more or less, for the rest of the day. The nerve blocks are quite painful, but unlike me, the pain doesn’t last long and is not as intense. I was nice enough to leave him with a sense of impending doom.

I allowed the medication to work for two days. However, during those two days, I sent signs of trouble. His face would go numb. His jaw and all of his teeth would hurt with a relatively mild cluster. Well placed micro clusters just to brighten his day. All of it culminated on the third day.

My human was much more active than normal. He felt better and didn’t want to waste the moment, a fatal error. He was somewhere between the dishes and dinner when Wham! I reminded him who was the boss. He falls to his knees, holding his head, making a noise that gets higher pitched as the pain level rises, and this time it rose and rose and rose. I was sending a very clear message. I’m in charge here. There’s nothing you can do about it. Don’t fuck with me.

“Niño, help me to the sofa!” He screams writhing in pain. “Get me a Suma, Thorazine, Red Bull and an alcohol pad. I’m way beyond oxygen.”

He chugs the RedBull and Thorazine first. Then, he rubs his belly with the alcohol pad and shoots the Sumatriptan. It’s like an Epi-pen. The Sumatriptan enters the bloodstream and my grip starts to loosen. That’s fine though. His body gets used to medications very quickly. It’s just a matter of time before he becomes immune to that triptan like it has all of the others.

As the use of his right eye returns to him and the pain levels start to subside, he breathes a very measured sigh of relief. He’s happy that his pain levels is returning to the comfort level. He also knows that I’m right around the corner and that I’ll hit whenever I damn-well please, usually when he’s doing something important. What’s his comfort level? It depends. If I’m being nice, 3-5; if not 4-6. I make sure that he’s always in some sort of pain. I’m nice like that.