Author: Cunill

Cluster headaches are a bitch is the understatement of any century. They’re merciless and strike you down without regard to where you are or what you’re doing. 

Today, I actually woke up in a pleasant mood. I had a song in my head and didn’t look out into the atrium and say, “Why the fuck am I awake?” I had actually slept. I thought it was going to be a good day for a change. The 06:00 cluster. Not too bad 3/4. Survivable with just morning meds. Then 09:30, BAM! cluster 2 visits. Chug a Red Bull (Cranberry, not the original battery acid flavor,) drink some coffee and water and eat something to try to appease this monster. It didn’t take the bait, so I grabbed the crackpipe (my MJ vaping pen) started smoking. No dice. I think my body has become immune to it too, like it does with every drug. This little episode ended up clocking in for about 2 hours at pain levels between 4-6.

Now, either of these clusters would send a normal human to the ER thinking that they’re stroking out and in the great estpain they’ve ever been in. For me, this stage normal. A 3-6/10 is normal for me. It’s tolerable. I can almost function as a normal human being. At this point, I was hoping to be done with them, or that the clusters would all stay in the 3-5 range. They didn’t. Its never that easy for me. I wish for once that it could be. At this point, I’m willing to go back to narcs. At least on narcs, I didn’t care so much that I had headaches.

13:10 and a 4 bar fire alarm goes off in my head. I can tell this this one will quickly go nuclear if I don’t treat it immediately. I tried my GammaCore device and computer said no! I was either out of days or charges. FUCK! Where’s the Benadryl? Red Bull #2?Anything! I got it just in time as it hit 7/10. It didn’t go beyond this time. Sevens aren’t a walk in the park either. I’m clearly impaired at a 7.

17:30-WHAM!-and not the band either. This cluster hits me at an 8-9/10 out of nowhere. There was no warning; no shadows; no aura; nothing. Now I’m clearly impaired and in distress. Luckily my child hadn’t left for school and knew exactly what to do to help stabilize me. Once stable (7/10) I was able to give myself a Norflex injection. 

At a 7/10, I’m still more or less coherent. The pain is like a full-grown cow standing on your foot and not moving anytime soon. I get confused and motor function starts to fail, but I can usually recover if I’m by myself and get back home. It’s still not exactly pleasant.

At an 8/10, cluster pain increases exponentially. At this point, I have to use all the fibre in my being to remain coherent and controlled. This is where I stare into the Abyss because I know that I only have so much time and energy left to keep it together. At this point, they physical pain is like being run down by an Uber XL, over and over again.

Once 9/10 visits, I’m useless. I can’t speak, move or yell. Nothing. I’m simply envolped in sheer pain. I crumple to the ground like a wadded piece of paper and silently scream for the nuclear apocalypse as the cluster completely takes control. I’m nothing more than a puddle on the ground, helpless. All I can do is cry and beat my searing, molten right eyebrow against whatever it can find. I want to crush the entire right brow and eye socket as the pain makes its way through my head like some evil volcano until I’m able to call for help or until those around me realize something is wrong and come looking for me. This happens at least once a day. I have no idea how a normal person would react to this pain. At this point, the pain is comparable to Death by CTA.

This brings us to the final number on the pain scale, 10. This is something you never want to experience or watch. The pain is exquisite, ever-evolving and exists in multiple dimensions. The best imagry of a 10 is a person changing into a werewolf. At this point, I am totally and absolutely incoherent. The pain is so overwhelming that I don’t want anyone around me. But I know somewhere in the back of my overloaded head that someone has to help me. So, I try not to hurt them while I’m a writhing mess on the floor because that other person is the only one who can help me. The problem is that person is the only ‘thing’ around that I can direct the pain and rage toward. I’m trapped in this pain induced, violent, visceral limbic rage that can’t be controlled until my body exhausts itself and falls into nothingness.

I can’t even begin to express the anger I feel toward those who voted for Trump. Rural America and suburban America always vote against their own interests. They always fall for the ‘blame the national problems on ‘x’ group and be afraid of ‘y’ group. That’s the normal MO. That’s what got GW elected and we all know what happened during those 8 long years. Unfortunately, Americans have very, very short attention spans and the aforementioned Americans have very short attention spans and nonexistent world views. The also vote with their ill-gotten beliefs, opinions and theories that are based on myth or some un-reputable site on the Internet. This time, though, this time, they really did it. No one in the world thought that anything more stupid than the Brexit vote could happen until America elected Donald Trump (Juan Perón) as its next President and the lovely porn star Melenia Trump to be the First Porn Star of America. WTF! This is what follows 8 years for economic and social progress thanks to the Obama administration.

Sadly, the Republicans in power were too weak to stand up to his movement and say “NO! This is not acceptable and you, sir, are not an acceptable candidate.” We’re going with someone who’s actually qualified.” According to their rules, it was a viable option. But, as usual, it was easier to sit on their hands than it was to obstruct something vitally important to the American democratic experience. Sure, you’re going to piss off his movement and lose the election, but you save the soul of the party. There’s another election in four years. Even the fucking Christian conservatives sold their souls to him on a flimsy ‘god has anointed him and god can use anyone as a vessel.’ Again…WTF! He doesn’t even know what a church is, unless he owns it. His gods are money, power and family-in that order. Notice, country isn’t on the list. He doesn’t give a fuck about you or anyone else. He’ll only do things that benefit him and his family and their illegal slush funds, I mean foundations.

To the teeming under-educated masses, it’s not my fault that you only finished high school. It’s not my fault that you haven’t traveled beyond your own county or State. It’s certainly not my fault that you don’t know the difference between accurate information and garbage. Finally, it’s not my fault that you fear things you don’t understand and rather than learning about them, you try to obliterate them. It’s not my fault that you remain blissfully ignorant of the world around you. You see, while you were here hating a black President who was very successful and pulled us out of a great hole left by the previous Republican administration with poise and grace as Congress blocked him every step of the way-even to the point of treason-the rest of the world was flying by.

The problem is that now there are many other countries that are ‘greater’ than we are, especially since Trump is planning on turning the dial back 50 years of more. I’m a dual national, so I’ve lived both here and in Spain. They’re both great countries to live in, but I can’t say that the US is a greater country than Spain. They’re just two different countries. All but a couple of the Western European countries, Canada, many Central and South American countries, the UK, Ireland, Australia and a few Asian countries and also solid democracies and a great place to live. Just like the US, they have their issues just like we do. Patriotism is being proud of your country but also being able to see, discuss and resolve the problems within your country. You and your new leader are not patriots, you’re nationalists. They’re very different. We have no problems, you conduct witch hunts, you harass, assault and even kill those who don’t fit your definition of patriot or feel who don’t deserve to live in the US. There is no reasoning with you because reason means nothing to you. I’m bad. You’re good and that’s the end of the story.

So, here’s the bottom line and it’s not what you’ve rationalized in your little brains (Yes, I am talking down to you.) Trump won because exposed the soft underbelly of Suburban and Rural America and exploited it with everything he had, and he did a bang-up job. He promised to restore your White Privilege from a PC world. Where people once had to respect each other, now if you’re a WASP, you have carte blanc to say anything you want to anyone. People are doing it. The Cheeto is silent. If he wants to be everyone’s president as he claims, he needs to address this. As its going now, he’s giving tacit support to the criminal acts being committed.

Trump won because you didn’t want a mosque in your back yard. You don’t understand Islam, so rather that see it as a branch of Judaism, like Christianity, you label it evil and all who practice it are terrorists. You desecrate their mosques. You interfere with their prayers.

That excuses people pulling women’s hijab off their heads in public. We don’t want them dirty, nasty LGBTQ people around either. Not understanding that homosexuality is found in thousands of species across the planet. And having the arrogance to think that we are somehow a threat to you or attracted to you. There is no Gay Agenda. We’re born gay. We don’t convert and we’re not paedophiles. Hell, if it were a matter of nurture rather than nature, I’d be one of you troglodytes.

The illegals, the illegals, someone stop the hordes of illegals! Get a grip Mary! Border crossing are at their lowest point since GW destroyed the economy that our current President has salvaged. Deportations are up under the Obama administration. They’re not taking your jobs. They’re doing jobs that no American would ever think of doing for next to no pay, but it’s better than starving to death in Mexico. They’re not taking your benefits because they can’t under state, local and federal law. I swear, if I hear someone saw ‘anchor babies’ to me again, I’ll rip their throats out. A baby born within the US or US controlled areas is automatically a US Citizen, regardless of the status of his/her parents. The baby is eligible for assistance and healthcare under S-Chip, thank you HRC, but the parents are not.

And who the fuck do you think gives you the right to walk up to some woman and grab her v-jayjay? I’d have a can of pepper spray on you so fast you wouldn’t know what was happening. Once you were on the ground, the only thing you’d feel would be the sharp stabbing pain of my stiletto piercing through your ear into your tiny brain. I’d be fine. I’d just tell the officers it was self-defense. I feared for my life. I’d have no remorse or regrets. You have no right to violate another human being in that way, even if your Cheese Puff should be a registered sex offender.

You also think it’s a great day for a parade around the cafeteria with your TP signs. Chants of White Power (Privilege) and individual threats against other students in full view. You even think it’s a good idea to tell you fellow students that they and their families will soon be deported. You don’t know whether they’re born here, have residency or undocumented. They’re brown, not white, so they don’t matter.

Harassing a black woman to the point of tears with a gun pointed at her head is also on your agenda. The poor woman was simply getting gas and minding her own business, but no. A trio of Trump whack jobs approached her and started screaming at her calling her all sorts of horrible things and racial slurs with a gun pointed at the back of her head. She was too terrified to look around and just kept pumping gas with tears streaming from her eyes until they finally left, after the spat on her. Classy, no?

White Privilege, I know you don’t like seeing it or hearing it, will be a huge problem for the next four years. White privilege is being able to walk out your door at an time without fear of anything. You don’t worry about the police stopping you. You don’t have to worry about race in the job market. You don’t have to worry about much of anything because the system has been set up to prefer and protect you. You’ve never felt hate or discrimination in your lives, so you have no point of reference with the rest of us. Yes, the rest of us, I am white, but I am not extended the courtesies of White Privilege. I’m gay and people usually figure that out fairly quickly because I make no secrets of it. I made that decision when I started teaching high school at a heavily Latino school. Gay kids need to see that there are positive, successful role models. They’re not alone and they’re certainly not garbage. I was rough at first. I’ve been denied housing, medical care and jobs simply because they suspected that I was gay. When I walk out the door, I wonder, I’m I coming back home today or will there be some breeder who has a baseball bat with my name on it. I couldn’t even begin to tell you how many times I’ve been called a fag, or worse. I’ve been hit in the head with full beer cans while waiting to get into a club just because of who I am. I have never once seen a gay person yell ‘Yo fishmonger! And hurl a beer can at him.” We’re peaceful. We don’t do those sorts of things. You, however, have never felt this type of fear. You don’t know what it’s like to be less than human. Even if you think you thought you were marginalized, you don’t have any idea what that is like. “No fag. I don’t rent my apartments to queers.” “I’m sorry, I can’t let you in his hospital room. You’re not a relative. (They’d been together for 10 years.)” This never happens to you. You come and go as you please without a care in the world. However, for the rest of us, we have to be very aware of our surroundings and constantly assess the threat level. If it’s too high. We leave. Better safe somewhere friendly than hurt or dead somewhere hostile.

The whole situation is very sad. If we’re lucky, there will be many faithless electors and this grave error will be reversed. If it isn’t, I am present at the death of the United States of America. It has ceased to exist and I shall not mourn her. You were warned. Trump made absolutely clear what he was all about. You stood idly by as he attacked group after group after group. When he finally turns on you, I will not be there to give you a hand. You’ve bitten mine too many times already. All you had to do was educate yourselves. See the atrocities committed in the past by authoritarian, fascist dictators. Listen to his rhetoric and his praise for Putin. Listen to his lack of concern for hundreds of millions of Americans. Now that he has your vote. He no longer needs you. He’ll turn on you soon enough. You hold no profit for him. To those of you who are ‘christian’ and voted for him. I completely turn my back on you. You have no right or moral authority to speak of your dead god, should it have ever existed. You sold your soul to the devil and he’s already sold it to someone else. How does it feel to lose your soul? To the rest of the sheep, how does it feel knowing that ultimately, he’s not going to fill his campaign promises. He’s already changing and altering them. Trump will do what he wants to do. He always does what he wants to do.

Buckle up boys, it’s going to be a bumpy ride!

¡Qué día más triste! Hoy, el pueblo estadounidense ha elegido un monstruo en vez de una persona que ha trabajado toda su vida en servicio al público. Y encima, ha sido juzgada, mal caracterizada, llamado mentirosa, corrupta y culpable de algún delito que no hayan encontrado todavía. Dice la gente blanqueada que no se puede confiar en ella. HRC no ha hecho nada más que hacerse rica durante su carrera por robar de la gente estadounidense. 

Es mentira. Mira, os digo que HRC no era mi primera opción, pero ganó la nominación y la apoyé. No puedo decir lo mismo para muchos de los demás que siguieron a Bernie. Hasta algunos votaron por Trump sabiendo cómo era por la rabia que se sentían hacia el partido demócrata. Era una traición imperdonable. Además, el pueblo negro tampoco se fue a las urnas por sentirse marginaliazos por el partido demócrata. Se lo hicieron con la idea de castigar al partido. Pues, los dos grupos no sólo castigaron al partido demócrata, si o al país entero y al mudo de extensión. HRC era la persona nominada por el partido demócrata para ser president. En aquel moment, todos los demás candidatos dejaron de existir y deberíamos de haberla apoyado. Siempre ha funcionado así. Esta vez, no. Esta vez un grupo sustancial de jilipollas decidió que sus creencias y sentimiento personales eran más importantes que la posibilidad de elegir a un fascista en EE UU.

Tampoco voy a culpar a solamente estos dos grupos. Los del tercer/quarto partido deberían de haber dejado la carrera. Los 3-5% que ganaron en cada estado hubieron sido votos por HRC en su mayoría. Los mismo sucedió com Nadar en la campaña entre GW y Gore. E historia y memoria nos ha contado el de sastre de aquellos 8 año. Por suerte, el Presidente no ha sacado de este quagmire, solamente por meternos en otro peor. ¡Vaya putada!

La mayoría del problema cae alrededor de los pies de los republicanos y los cristianos derechistas. Esos dos grupos tienen la misma imagen de lo que debe paras en EE UU. Su gran sueño de EE UU es los 1946-1962. El mundo en que vivimos ahora ha cambiado un montón al punto de que lo se lo reconoce. La vida era más fácil. ‘La gente de color’ vivía en sus lugares y no se mezclaba, a la amenaza de violencia, los maricones en el armario o en la cárcel dónde deben estar, abortos en los callejones y otros lugares no sanitarios-algunas intentaron a hacerlos en casa, sin éxito, las creyencias de una fé forzadas sobre la población entera, doce años de la escuela y un buen trabajo para toda la vida, con suerte-fueras a la universidad para estudiar una carrera para conseguir un oficio mejor y ganar hasta más dinero, solamente el hombre trabajaba y la mujer se quedaba cuidando la casa y los niños, con la cena preparado en cuanto llegara el marido a casa. ¡Qué simplicidad! ¡Qué felicidad!

Todo iba bien hasta que llegó el senador de Wisconsin, Joe McCarthy. McCarthy empezó la segunda Inquisición en EE UU. No buscaba brujas, pero buscaba comunistas, socialistas, hente sabía y culta-porque normalmente están a la izquierda políticamente, homosexuales, ateos, testigos de Jehova, hasta católicos-no pueden ser leales a amos los EE UU y al Vaticano a la misma vez. Intradujo ‘bajo dios’ al juramento nacional y varias otras cansas con la idea de que la gente que buscaba no puede decir bajo dios. Este hombre destrozó muchas vidas y carreras en el proceso de quitar los elementos subversivos y proteger a ‘la democracia de los EE. UU.’ Siempre hay gente que no se olvida.

Ahora, unos 66 años después ha vuelto, pero en una forma más agresiva y mucho más virulenta. Aquel animal podía decir lo que le daba la gana sin consecuencias. La prensa, la gran mayoría de los republicanos demás y los cristianos por la mayoría se quedaron en silencio. Por fin, después de 8 años de tener que tratarse al otro con respeto pudieron decir lo que les daba la gana. Lo dejaron mentir, mentir y mentir escuchando cada palabra como si fuera la voz de su propio dios. Se pasaban de la violencia constante que se les rodeaban en la presencia de Trump. Echaron a golpes a manifestantes pacíficos ejerciendo sus derechos de la primera enmienda. Hubieron varios momentos en los cuales los cristianos lo deberían de haber dejado. Pero no, con sus promesas vacías anti-LGBTQ, de proteger su libertad de religión-el poder discriminar-y hacer que las iglesias pueden participar directamente en las elecciones y todavía no tener que pagar impuestos, cometieron un fallo mortal, una abominación ante su dios querido, un pecado inmortal. Vendieron sus almas al diablo y perdieron su ‘autoridad moral’ solamente para conservar el 23% de poder político que tienen. Vendieron sus almas y a la misma vez condenaron a sus hijos y quizás a sus nietos.

Al partido republicano, el establecimiento como os llaman, hicisteis lo mismo. Sois tan culpable como los cristianos derechistas. Tuvieron bastantes oportunidades de alejaros y pararlo, pero no tuvisteis la voluntad. No quisisteis ir en contra de la gente sabiendo las graves eventualidades. Tuvisteis la oportunidad de elegir a otro en vuestra convención pero otra vez, no tuvisteis la voluntad. No quisisteis’romper’ el partido. Claro, jodiendo a tanta gente, si hubierais perdido la elección pero también hubierais retenido control del partido. Ahora, el partido republicano no existe. Tenemos el Falange fascistaque todavía crece, los obstrucionistas y los del establecimiento que ahora son demócratas, más o menos. Sí, por cierto habéis ganado la presidencia y el congreso, pero al costo de vuestra partido. Ahora sois tres partidos distintos con metas distintas. ¿Queráis volver a julio para arreglarlo?

No sé lo que va a pasar. Este imbécil siempre ha trabajado en el mundo de negocios y no tiene ni puta idea de cómo funciona el gobierno. No será lo que espera. No podrá portarse como si fuera un programa de televisión. Su éxito no es garantizado. Ha dicho un millón de cosas feísimas acerca de todos los grupos diferentes de EE UU que no son güero, varón, heterosexual, protestante, lo que llamamos WASP en inglés. No creo que cumpla con ninguno de sus amenazas porque van in contra de la Constitución y El Senado no tiene ningún interés en meters en estos líos. Temo que acabará com Obamacare sin remplazarlo, The Dream Act y otros órdenes ejecutivas iniciadas por la administración del Presidente Obama. Lo voy a echar mucho de menos. Ojalá que no se vaya lejos.

De mi parte, pues, vamos a ver. Voy a esperar a ver lo que hace. Trump es el presidente-electo y merece la oportunidad de mostrarnos lo que va a hacer. Los primeros cien días serán muy importantes. No tengo miedo de lo que va a pasar con él pero sí estoy un poco preocupado con sus fanáticos y cómo ellos van a reaccionar a los demás ya que tienen el derecho tácito de discriminar cuándo les den la gana. Esto me concierne más que nada. Y si todo vaya a la mierda y este país se convierte en una pesadilla, me voy a España.

I have one simple question for anyone who may be reading this. Why does something(s) that happened over 30 years ago in a place far, far away bother me to this day? Does shit really have to be so complicated. Before I go any further, this probably won’t be like other posts. This one might travel around a bit and get lost here and there.

Infant me: I don’t seem to be where I belong. There was a detour or a change of plans somewhere along the way that I seem to have missed. I would just rather stick around here until this mess is sorted out. No? Ok, then I’ll go home with these nice people. I hope. Oopsie!

What?! -righteous indignation-It’s my fault that you don’t do things even close to when you say you will. There are still at least 10 potholes in the driveway that aren’t filled. 50! If he hits that bump…In the air I go. My first date was with a tree branch. My second was with the 3-point hitch on the back of the truck. Finally, my thrid was in the local ER getting some 178 stitches.

Wait. What do you mean, I’m different. I have stitches. They have to be wrapped in guaze for now. White noise filled the silence. Once they could take the gauze off, the exposed stitches had to be kept moist. Ointment-glistens like the sun. Really makes those stitches sparkle. Did nothing for my being different.

Valentine’s Day. I’m excited. I made everyone cards to exchange. First grade-Michael, how many cards did you get? -25. Excellent. Second grade, Michael, how many cards did you get? 18(25) Really? You must have misplaced them somewhere. Why don’t you retrace your steps and find them. -Why don’t you suck my cock? Wonderful. Third Grade, Michael, how many cards did you get? 14(25) Moving right along.

Yay! The Cub Scout’s model race car. I have my kit and the tools I need. I think I’ll get started on it. Oh fuck! Here comes dad. This is going to be anything but fun. No, give me the plane thingy back. I was using just like you are. Why are you yelling at me? I put the wheels in right. ‘Jim, leave him alone.’ He left after a couple of parting jabs, both physical and emotional. It didn’t last long, but at least I had enough time to paint the damned car. With the paint wet, he couldn’t do anything else to it. It was done. All I had left to do was glue the ‘dome’ on top. I left it to dry. Race day came and the little car blew the competition away. I was extatic. It was the first time I had actually won something. Wait, there’s a problem? Weights, what weights? I didn’t put them there. I don’t know how they, I looked at dad and was filled with anger. I threw the car at him and stormed out of the building crying. It wasn’t the last time he sabotaged a project of mine.

{Each one of these little things opens up a new set of doors with things behind them that I don’t necessarily want to open.}

Bunnies! My first 4-H project that I took to the county fair. I had French Flop-eared bunnies and a white-satin species. They were gorgeous. They had babies that were even more gorgeous. The judges even liked them and how tame they were. My dad hated them. All they did was eat food. They weren’t good for anything else. However, they won awards at the fair. I would go out to the barn to play with them every day so that they were all tame. One day Mom took me shopping for something or other. When we got home, I went to pet the bunnies and they were all gone. I asked Mom about it and she didn’t know anything about them (she claimed.) So, then I asked dad. ‘I told you. They’re worthless animals. All they do is eat and cost money. I slaughtered them all and took them to the meat packing plant. My heart sank. They were my bunnies, not his. I don’t think I said much of anything to him for several days. In future years, I took pigs to the fair. They didn’t fare much better with my father either. He didn’t kill any of them, but he wasn’t nice to them either. I remember one year when we were trying to get them onto the truck, one of them wasn’t cooperating, so he decided that it would be a good idea to jump up on its back and jump up and down on him until he climbed the shoot and got into the bed of the truck. That was unreal. His face was purple and red and he was screaming, swearing and shouting. The pig was squealing bloody murder. I lost it.

Ever since third or fourth grade I can hear them. Do you wanna play? We have a game that we think you’ll like. Wanna know what it’s called? Smear the QUEER! And, guess who’s the queer…Every day on the playground from 3rd-6th grade. Teachers knew. A couple of them tried to keep the other boys away from me. Most didn’t give a fuck. Every day-Smear the queer. You’re the queer. We’re gonna kill you, FAGGOT.

Faggot? What’s that? The dictionary says queer is different and then that a faggot is a bundle of sticks. I was absolutely confused by this because I had no idea what being different had in common with bundle of sticks. Even on my biggest trips, I still can’t reconcile that one. Finally, one of them spoke, an ultrabratty kid-you cornhole and we all know it. -Now, listen here shit for brains. You’re moving into dangerous territory. However, now that I think about it, something is different. I see how my friends look at girls. I’d love to be able to look at girls the way that they do. I can’t. I don’t see them that way. I see them as human. I can tell whether one is attractive or not, but I don’t view females romantically. But I begged a deaf god to take this curse from me once I understand what they were saying. Once I understood that what they were saying was right. I was too busy looking at the boys. Different, unpopular and gay-your life is over now.

For the next three years, I would hear the same basic thing(s) day in and day out whether in PE or at recess, Queer, Fag, Faggot. The bus ride home was always hell. I was also peppered with Wether or not I was staying for cheerleading practice, from time to time too. Oddly, beyond the name calling, having my gender questioned at 10 may have been an issue. It always bothered me more when they’d ask if I was staying for cheerleading practice than when they’d call me names. I’m sure it’s something with my dad telling me I can’t do anything other than ‘women’s work’ and now at school someone else is saying that I’m not male. My 10 y/o psyche must have been a little frayed. A wrist and an arm got broken on one bus trip home. They weren’t mine.

I’ll stop here for now. Jr High is was a completely different animal.

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.

They don’t listen. Does anyone listen to me? Do they think that just bc I’m disabled or bc they’re ‘abled’ they know better?

I’m really pissed at the way I was treated by Mayo this time. At no time was I given a voice over my own care. They had a script they wanted to follow to treat my migraines and background pain that failed during outpatient treatment. It also failed during inpatient treatment bc it was basically the same.

The nurses were fantastic, but I have to say that the docs were not. I don’t know if they have some sort of hidden agenda as to the primacy of migraine or not, but they don’t seem to recognize cluster headaches. There is no protocol on how to treat cluster headaches and they don’t really seem to be interested in it either.

At no time did a doctor really listen to me. I thought Dr. M did, but reading her notes on the patient portal, she wasn’t listening either. She was hearing what she wanted to justify the protocol. I only saw Dr. V twice and that was for her to say that even though I don’t see her, she knows what’s going on and then again to basically say goodbye. She’s going on sabbatical and I’m being handed off to another one of the neurologists. The rest of the time, other docs came in and made judgments about my migraines and medications. I kept trying to correct them, but no one would say clusters.

The night before I got out was hell. The triad of docs had visited me and told me that I wouldn’t be getting any more pain meds or tranqs and that I was being released the next day. (I was nowhere near release, especially if they took the meds away.) I explained to them, as I had before, and begged them to leave me on my normal regimen until I left the hospital. I knew my clusters and I knew what would happen if the shield went down. Nope, no more meds. I told them, fine, you’ll come in tomorrow and find an oozing hot mess. They just looked at me. I think they were androids. Around 21:30h, a cluster came on that was a little more than I could handle. I had a great nurse and she was able to get something for me from the on-call. I went to sleep.

My 02:00 woke me up and was more severe than normal. I also needed to go to the bathroom. I had the little leg massagers on, so I needed help. The CNA came in to take the connecters off of my feet and help me out of bed. She escorted me all 1.5m to the bathroom and waned to stay in there while I peed. I told that that I was fine and could take it from there. She was being extremely aggressive.

While I was trying to get things together and my head cleared so I could remember how to tinkle, Jr. went off. I said, Jr not now. Be quiet and went to turn the pump off. All of a sudden, the door opens, she whisks me around, knocking me down with the pole and tells me to never touch the pump, that I’m never to touch the machine. By now, the fight had been triggered and I told her that I had been using that pump since she was born. She still kept fighting with me. She was very loud and aggressive. I still hadn’t gotten my pants above my knees.

The night nurse came in to do the 02:00 meds a little late and noticed the scuffle. She yelled at her coworker about the pump not being important and her having told me to shut it off. She apologized profusely to me, calmed me down and got me back into bed. I went right back to sleep. I woke up around 5:00 the next morning. I ate breakfast, had my morning meds and about 07:30-Boom! Level 9, nothing but O2 to use. Everything had been discontinued as of 6:30. I was out of my mind.

The triad came in one last time. I was begging them for something for pain, but they wouldn’t budge. It was obvious that I was in huge amounts of pain, but they stood there and talked at me. They talked about my discharge and what I needed to do and not do when I got home. I told them that I wasn’t ready to go home. I was sitting there crying and sucking down O2. Even the nurse told them that I wasn’t well enough to go home. It didn’t matter to them. The protocol had run its course and they had nothing else. I asked them what I was supposed to do? Go home and shoot Benadryl? Find a prescribing doc? Find a doc to prescribe pot? Nothing. I didn’t even get a reaction out of them. They just turned around and left the nurse to calm me down.

Well, this is fun. On 13/May I went to an outpatient Botox, nerve block procedure. Everything went fine with the occipitals and the left front super orbital. However the right superorbital was everything except nice. My body fought it the entire times. The Botox went where it wanted. It was a mess.

A couple days later, the injection sites were still sore on the right sides and a severe cluster had set in. (8-10 baseline with clusters spiking much higher). I contacted Dr.V and ended up going to the Infusion Center for daily med/painkiller infusions. The dilaudid was nice. It and Benadryl kept the pain to a dull roar for quite a while. Alas, since it was outpatient and the clusters are Legion, it didn’t do much good for me. Yesterday I checked in to Mayo until Saturday.

The docs and all staff are very nice, always. Sometimes it’s a little unnerving. The nurses and cnas are all excellent and go above and beyond the calmly of duty to help you and keep you comfortable. That is a nice change fro Diamond where only those who know and like you give excellent service. On the bad side, everything is a monolithic process. Teams meet, agree, issue and activate orders. It takes a lot of time for decisions to be make as they’re carefully weighed. It all works out in the end though.

My only other point of contention is that this facility deals with migraines, any kind of migraine. They have my migraines under control for the most part. However, I’m not sure that they are equipped to deal with clusters. I keep trying to explain how my body deals with this and they keep ignoring what I say. I’m going to have to be a little less nice about it. Benadryl works for me, Dilaudid does too. The bad news is that it’s a narcotic and has dependency issues (I’m aware of that and don’t have an addictive personality)  This 300-500  mg increase in Lyrica (same set of issues) is the same thing. Lyrica is another controlled substance with a wide profit margin.

train of thought just left and took me with it 😦

Hi everyone, I’m back.

its been awhile since my last post. February to be exact. A lot has happened since February. Mostly the clusters, my nephew moving in with me and my stupid mother (and family). I was in rehab in mid-April to be taken off of some of the drugs that I had been on for the last 500 years so that they could find some new combos. It was a big deal bc the more drugs they took me off of, they worse I felt. Brian didn’t want me to be alone in the house after I got out bc my adjustment period is never graceful, so he wanted my mom to come stay with me.

i asked her and she enthusiastically said yes when I asked her to do it. By midweek the following week, she still hadn’t sent me her plans, so Imcalled from rehab and asked her what was going on. ‘Well, Michael. You see I know you need me on Thursday, but aim have a procedure on Wed.(colonoscopy) and I don’t know how I’ll feel Thursday. (Gassy, I told her, gassy.) Then came the your father has an appointment on Th but will forget if I don’t remind him to go. (We have phones.) Finally cam the and I have a really important meeting on Friday that I really shouldn’t miss. (where they’ll send the church missions funds. They don’t have any money!). I just said fine, whatever and ended the conversation. Let’s just say Brian’s side of the family, including his mother had some very unkind words for her.

Now she will get the opportunity once again. I’ll be meeting with a neurosurgeon about this artery that’s trapped by the trimegial nerve and how to best fix it. It will probably be through surgery. We already know that it’s a big enough deal that My mother-law will be out here. However, going into strike 3 and with everyone and everything else that’s much more important than me, it won’t come as any surprise if she didn’t show.

If she doesn’t, I see no reason to keep the relationship going as much as that pains me. My relationship with my father has been deal, three meters under and very cold for a good 30 years. As far as my relationships with ,y brother and his kids, I haven’t talked to my brother in two years. There no relationship. There never was. It was never fostered. It certainly wasn’t a happy time, nor is it a time I like to revisit. I still flinch at the sight of hot wheels racetracks. And I guess, that’s how it will end.

As a teen I worked in the truck stop of my little shithole town. It was the only restaurant for miles and had a decent reputation, although I never understood why. People would come from all over Ohio just to eat there. In the mornings, truckers and farmers would sit at the bar drinking endless cups of coffee talking shit. On Friday and Saturday nights, the Coach room was open. It had a generous buffet and it also featured seafood, frozen naturally, and freshly carved meat. I worked the buffet nearly every weekend in some capacity. Most of the time I helped prepare food and take it out to the buffet. Sometimes I carved the roasts and Prime Rib. Other times I was a busboy. It depended on what they needed me to do. I basically worked every job in the place except cashier.

Some weekend nights, there would be a kind of static in the air that I never completely understood until recently. Two middle-aged gentlemen would come in to eat. I didn’t think anything of it. They were just customers. I was in the waitress station one Friday when I heard them talking about the table. The waitresses drew straws to see who would have the unfortunate pleasure of waiting on them. I found that very strange as well. They’re just customers like the rest of them. What makes them so special.

I watched how the waitress treated them. She was overly kind to the point that it was grotesque. I still didn’t understand. She even messed up their drink order on purpose (decaf instead of regular). I asked her why and she just said that she couldn’t stand the two of them. None of the waitresses would say anything either as to why the two gentlemen were social pariahs. They even tipped very well, regardless of the service.

A couple of weeks later, they came back for the Prime Rib buffet. Same scenario with the electric attitude that I still didn’t understand. This time, though, no one was drawing straws, nor were they going to their table. I asked the manager what was wrong and what was going on. She simply said:

“Well, you see Michael. That’s Uncle Chuck and Auntie Fran. They’re a little light in the loafers.”

I looked at her and said, “That’s the dumbest fucking thing I think I’ve ever heard.” (A little loudly) Then I went to the waitress station, grabbed a tray and a couple of glasses of water. I approached their table, introduced myself and took their drink orders. Since they wanted the buffet, all they had to do was go get their food. Like with any other customer, I simply made sure they had what they wanted or needed. I also gave them the respect as human beings that they deserved. They were extremely happy with their experience and I was extremely happy with the $50 tip which was fantastic in 1986. The other girls bitched because I didn’t put the money in the pool, but I kept it anyway. I told them that I served the couple because they refused to, so it’s my money. Fuck them!

I looked at my manager and the restaurant owner’s son before closing and asked why they allowed the girls to do something like that. It wasn’t right. They’re two people coming into your restaurant to eat. They’re spending their money to line your pockets.

“It just ain’t right. It’s not natural. They give us the creeps.” They said.

“But you’ll still take their money, won’t you?! You saw two fags sitting at a table that have been here numerous times, despite your best efforts to dissuade them from coming. They always seem to leave full and happy regardless of how the ‘losing’ waitress treats them. They leave a tip for her and they pay you way too much money for an overpriced buffet. I see two people sitting at a table who want to come and enjoy a meal in each other’s company.” I said.

These were the very first gay men I’d ever met. I thought I was the only one until I left that little POS hellhole.