Month: January 2016

I honestly don’t know what’s going on at DHC. They seem to be on some path toward self-destruction. A couple years ago, they put a policy in place, without warning, that stated that anyone on TCHIP had to give a $100 deposit before getting an SPG block. I didn’t like it because my insurance pays the bills, but fine. It’s only $100. It’s a deposit, so I should see it back once my insurance pays. I’ve never seen a penny of it.

This year, also without warning, DHC has instituted a $1000 deposit to even get your foot into the door at rehab. It has been a nightmare for various people. Most people can’t afford to plunk down $1k just to get into rehab. They’d go broke. Many are financially hanging on by their fingernails as it is. I would be if we didn’t have two incomes. I seem to be the go to person for both Oz and the Towers, so people asked me what was going on. I had no clue, but I told them that I’d try to get them an answer.

I called Oz to talk to pay my balance and then transfer to Harriet to ask about the deposit. I paid the balance and then went straight to voicemail, twice. The next day I called again. They know my voice and greeted me by name. I’ve been there way too often. I asked to be transferred to Harriet. She actually answered. I asked her the reason for the deposit, whether or not we’ll ever see them money back and why we weren’t notified. She said that the notification was the sign on the counter. I told her that’s not notification, that’s a I’m being fucked over (but in polite words). I got that the deposit is to cover things that insurance doesn’t. There is a lot of cross billing between Oz and the Towers and sometimes, insurance doesn’t cover all of it. The deposit is to cover the shortfall. I told her that it wasn’t a deposit then, it was a subsidy and they should word it as such. I also told her that we should have been given 30 notice before the new policy went into effect according to the IL Atty. General’s Office. I asked her very nicely, but forcefully, that they generate a letter to their patients similar to the letter they sent us about the Toradol recall. She whimpered and whined, but I really didn’t let her get a word in edgewise.

I reported back to the board. More questions. Is this legal? Is it ethical? How does this affect insurance? I don’t have the answer to these questions. I just got the answer and reason for the $1k deposit. AND here’s where I’m going to be a bit selfish. I can’t tell you how many people over the board and through IM asked me to get this information. As I’ve told you before, they know me by voice. Before I moved to Phoenix, I was there every 3 weeks. I didn’t even have to tell them my name. They knew my name wasn’t James, it’s Michael. I use my middle name. I’ve been there since 2000, but I still took a huge risk taking on the billing department. Harriet has made other people’s lives miserable for less. She’s not the most pleasant person in the world. There were probably consequences to my actions, but I asked anyway.

When I reported the whole issue back to the board and fielded a couple more questions, I believe I got a total of maybe 4 ‘Thank you’s.’ I’m not looking for validation all the time, but this was a big deal had it gone badly. I happily do this job out of the kindness of my heart. I love doing it. I like looking things up for people and putting funny things up to brighten someone’s day. It’s fun, but when it’s serious, it’s serious.

That stupid thing with Sara, I still don’t understand. She could’ve complained all she wanted about Diamond. She just couldn’t recommend docs like she did or sink to the level of toxicity that she did. I was blissfully unaware that the entire incident had happened until I woke up the next morning. Yes, I did write her the message. It was diplomatic, not snarky. I think the only snarky part was the end of the message. I don’t have time to deal with those people. I am there to serve and protect the board. They can say whatever the fuck they want to as long as they don’t mention names and don’t go down some bottomless rabbit hole.

Now, we’re running a problem with insurance/medicare-aide not allowing out of state patients to see their docs at DHC. I’m not cool with that. I don’t want to lose people because of an insurance problem, but the rules are current and active DHC patients. The membership of the board will have to vote on the issue.

I am currently a little unhappy with my wizard. He, and his staff, seem not to be as responsive to me now that I’ve gone to Mayo. I’ve been trying to get an Rx filled for a little over a week now. I sent the docs from Mayo to my wizard and got a non-answer from him as to what his opinion was. I’ve asked him another series of questions, so I hope to get a better answer over the weekend. I’m not sure why they can’t read email over the weekend, especially when they just got back from vacation.

I’m not sure what’s going on there, but I just hope it’s not going to be a quality of care issue. I still need my wizard and I’ll still need my histamine treatment, maybe sooner than later.

 

Indulge me for a few moments. I didn’t do a blog dump after the psycho last Monday because I guess I didn’t really know what to say. At this moment in time, I can clearly say that I am angry.

Dr. Dragonfly and I have been talking about that anger for a little while now and it seems that between my mother and my father there’s enough to go around. My father was a given, but I hadn’t considered my mother.  My father was (is) an asshole and bully who never thought I could do anything right. I always had to learn the hard way and nothing was ever good enough for him. By the ripe old age of 14 or 15, I knew that I was going to escape. There was no way that I would stay in the small town environment. I didn’t have the small town mentality. I didn’t deal well with the small ideas and the closed mindedness.

There were a few particularly telling events with him from my teenage years that actually made me finally give up on him. He forced me to play basket ball in Jr. High. I sucked. I actually made a basket for the other team because I had no idea what was going on. Luckily, I got hurt and that ended my basketball career. About that same time, and earlier, hot wheels race cars were very popular. Unfortunately, the race car tracks made a good weapon to use against your children. He would beat me mercilessly with them. The welts were visible for days on my ass and the backs of my legs. This is also the time when we wore track shorts for PE. You could see all of the welts. The PE teacher could clearly see all of the welts, but she did nothing. She didn’t care. You didn’t get involved with family squabbles.

Since it was clear that I was being abused at home, why not abuse me at school too. I mean, the name calling just wasn’t enough. More than a couple times, I was forced by stronger classmates to suck cock either in the shower or while we were changing to go to class. Afterwards, I just sat in the shower and cried. The PE teacher knew what was going on, but all I got was a ‘C’mon Stewart. You’re going to be late for class and I’m not writing you a pass.’ There was no one I could tell about it. No one would believe me. They still don’t. I would tell my mom that I was being harassed and bullied at school and she would just dismiss it and tell me to try harder to get along with the other kids. She didn’t understand why I had to be so different from everyone else. Dad just called the bullying horseplay and said that it happened to everyone. Now, we call it aggravated sexual assault. It happened more than once over the years. The first time, I was 13.

I was also very good with music. At that time drum and bugle corps were very popular. There was one in a nearby city. He took me to audition, but I didn’t make it in. When we got in the car, I was already crestfallen, but he had to add insult to injury and slam his ram and fist into my chest and tell me how worthless I was because I couldn’t get into a goddamned drum and bugle corps. How would I ever make it into Ohio State’s marching band? (I wasn’t going to go to Ohio State.)

That same year, we were coming home from church one day. I noticed a pair of dogs running around playing at a house we always went past. They were German Shepherds, but something was different about them. They were albino. I said, look, there are two albino German Shepherds! My dad quickly said that there was no such animal. I said, look, there they are playing in the yard. It didn’t matter. They didn’t exist and I was on the receiving end of the hot wheels racetrack again. Later that same day, we went back to Ridgeway (nearby village) to work on a float for an upcoming parade. The preacher came up to me, put his arm around me and told me what a wonderful, christian man my father was. I was incredulous! I looked at my preacher and said, loud enough for everyone to hear me-welts fully visible-My dad is a bastard! That didn’t go over so well. I was taken behind the building and, of course, beaten up. We retuned to the float where dad said, he’ll be fine now. I just gave him a little tune-up. No one intervened, not even the preacher. I told my mom what happened and got, ‘well you shouldn’t say things like that about your father, especially when you’re in public.’

My last attempt at pleasing him was a tractor certification course. Ohio changed the laws to where if you didn’t have a license, you had to be certified to drive a tractor on the road. (As if driving a tractor were difficult. I’d been doing it since I was 8.) Fine, I took the course like he wanted me to and did very well on the laws part. It was boring, but it got me out of the house. The tractor/combine driving part was ok as long as I was backing something up that had 3 or 4 wheels and a long enough tongue to give me some wiggle room. It wasn’t perfect, but I could do it. When it came to something with two wheels, however, no dice. I couldn’t back up a plough to save my life. One day, after practicing for who know how long and not getting it right, my dad got really mad again and pulled me off of a moving tractor. Luckily, I had time to pop the clutch so that the tractor stopped moving. He slammed me against a metal corn crib and started beating me with a lead/metal pipe and I started screaming at him. Mom heard the noise and came out. All I got was a ‘Jim put that pipe down and let him go before you hurt him.’ Dad stopped. I looked at him and said, ‘If you ever fucking touch me again, the next person you’ll be looking at is a police officer.’ and walked away. I think I got in my car and went to visit my grandpa for a very long time. I was 14 and it sucked because I was still dependent on them.

Now, my anger at my dad is still there, but it has subsided and mostly turned into repulsion and disgust. He is an ignorant, overbearing ogre to this day and still tries to pick fights with me. All I wanted to hear from him the entire time I was growing up was that he was proud of me and that he loved me. He finally said it when I came home from my year abroad in Spain (Universidad de Barcelona) when they picked me up at the airport. I just looked into his eyes and said, ‘thanks, but it’s too little, too late.’

Now, my mom comes into the picture. I hadn’t realized that the entire time I was growing up she had been impotent and mostly absent. Not absent in physical terms, but absent in emotional terms. I never gave anyone trouble. I was a chameleon. I could be what you wanted me to be. I had no identity. Since I didn’t cause problems, everyone else took precedence over me. My brother was a mess (still is). My cousin was a mess (still is). It didn’t matter who or what it was, it was more important than me because I was able to take care of myself. I was independent from an early age.

I constantly told her about the bullying and the things they called me. I’d tell her that on the playground I didn’t really play with anyone because they all wanted to play ‘smear the queer’ and you know who the queer was. ‘You just need to try harder to fit in.’ Why do I have to try harder? I’m not doing anything. They’re doing this to me.’ ‘It will be ok honey, or pumpkin or whatever she called me.’ It was never ok. I stopped saying anything. It didn’t matter, she wasn’t going to really do anything anyway. The only time she actually intervened on my behalf was in 4th grade when the teacher put me in the ‘blackbirds’ reading group. (The lowest skill group. I was already reading at an 11th grade level.) Then, she had an opinion. ‘Aren’t you going to go to my conferences (especially in high school)?’ ‘No, I don’t need to worry about you. You’re getting good grades and you don’t cause problems. I have to deal with your brother.’

I’d go up to my room after dad got done with me. Sometimes, she’d come up and try to console me. She’d say that your father loves you, he just doesn’t know how to show it. Obviously. Why didn’t you protect me? Why didn’t you stop him? Why do you hit me when you’re frustrated with dad or my brother? I didn’t do anything. Why are you so strict with me but you let my brother do whatever the fuck he wants? You don’t smell the pot and vodka on him when he comes home every night? (from 13-on) I don’t care what the neighbors think. Why do you? Why does everyone come before me? Why didn’t you leave? (Later answered as ‘people didn’t do that during that time period.’-Yes they did.) Why did you forget me at graduation? No one offered me a ride home and I was once again a laughing stock on my last day of school. I thought parental love was unconditional. That went out the window when you found out that I’m gay. That took years for you to get over. It’s funny how your gay son is the normal one and your straight one and my straight cousin are hot messes. There are worse things than being gay.

I don’t visit now, other than for medical reasons, because I don’t want to. I don’t want to see dad at all and I’m a little miffed at you now. Even now, as soon as you think we’re going to get into some sort of emotional discussion or discussion of something that happened in my past, all of a sudden, you have to get dad lunch or Brooke just walked in the door or Damien’s a hot mess and you don’t know what to do with him, or David needs new pants so you have to go to the store and get them for him. Everyone comes before me.

The other day, I put up a video of me in the middle of a cluster attack. I wanted people to see what they are and to see the pain they cause and the damage they do. Most people wrote something on my wall. My father-in-law wrote on my wall for both of them. You sent me a a text apologizing for not being on the computer lately because it was going bad. Wtf? You always say you want to be part of my life, you want to know what I’m doing and you want to know how I’m doing. Text, call…’I don’t want to call. I don’t want to interrupt you.’ Interrupt me?! I’m disabled. I’m not doing anything.

I’m done.

 

 

While I didn’t go to the psycho this week, something of importance did happen. On 11/Jan, a headache cycle that had been building since Christmas finally came to a head; and what a glorious head it was. On the 10th, the headaches gained intensity, but didn’t really spike all that much. They stayed between a 6/7 for the most part, but the meds weren’t really helping. The next morning, I felt like staying home, but I didn’t want to cancel on the psycho, so I went. I was in obvious distress as the morning started out with 5/6 right off the bat. I had to take a Soma just to get though. (You really can’t do the EMDR with muscle relaxers on board.) So we just talked. I even talked to her about going to the ER. I also had to wait until Safeway came to deliver my groceries. Of course they didn’t come until almost 19:30. By 12:00, the clusters were spiking every 15 minutes at a solid 10 or better. The baseline headache did not go under 8 at any point. It was something like 10 for 5 minutes, fall to 8/9. The day before, they spiked every hour to half hour, but not as badly. By the time the groceries came, I was a hot mess.

I tried to get Major, my friend who lives down here, to come get me to take me to Mayo, but, let’s say, there were issues. I grabbed an Uber and went straight to the ER. I couldn’t tolerate the pain any longer. It had to end somehow. The Uber driver was even nice enough to walk me to the door just to make sure that I was ok. I went through triage, registration and I think I waited painfully for about an hour before they called me back. At first, I was on a bed in the hallway bc all of the rooms were full, but I didn’t mind. They did vitals and all of that. The nurse took my story and then the ER doc came back and asked what she could do for me. I just said to make the pain stop. She called the neuro on call. By that time, I was incoherent. I told her the story as best as I could and she said to let her make another call.

They moved me into a room. (I have yet to have any medication, but they are trying to make me as comfortable as possible without it. They didn’t want to give me anything narcotic that might change my brain chemistry, or something like that. It was 23:30. By this time, I know I’m not going home. The neuro came back with a friend from the headache division to ask more questions. (I’m still fairly incoherent.) I answered the ones about the clusters and about the seizures. I had one while in the ER. They told me that I would be admitted and that they were just waiting on a bed. (Everything is a process there.) They gave me 50mg of Benadryl along with 80mg of Toradol in an IV drip along with saline. I asked them what the 50mg of Benadryl were supposed to do. I guess that the industry standard. They refused to budge. They couldn’t believe I could even tolerate 50mg and n0t be asleep. I finally got to my room around 1:30, I think.

More questions. Similar to DHC, I was asked all sorts of questions by a very nice nurse. The Benadryl+ IV was still hung, so I didn’t mind. I answered as best as my confused mind allowed. When asked my medications, I gave them my phone. There was absolutely no way I could’ve remembered them in that state. After the nurse, 2 more neuros. More questions. I evidently told the same story over and over again. They were satisfied. I must have dozed off somewhere around 4:30 because when I woke, my breakfast was sitting on the tray next to me. The nurse came back in and plugged a couple of leads that had come off of the wireless heart monitor that I had to wear back in. They don’t wake you. They let you sleep.

More questions, more neuros and headache specialists, seizure alarm goes off, between the narcolepsy and that new thing. They did a complete change in my drug routine. They withheld the Provigil completely. (That’s what keeps the narcolepsy at bay.) They wanted me to sleep to try to start repairing 37 years of damage. I was locked in my bed with the little alarm thing and had to call the nurse every time I wanted to get up or needed to go to the bathroom. They were not annoyed. They were happy to do it. I was given special socks to wear that I was allowed to bring home. The only thing I found really odd was that they measure your pee. They don’t test it. You have to pee in a urinal each time so that they can measure it. It was kind of weird at first, but you get used to it. Everyone was happy to do whatever they could and apologized if they couldn’t get to you the second you hit the button. They didn’t ask your pain level every three minutes and they always asked if there was something they could do for you like bring water or snacks, etc. The CNAs are trained to give medications, sponge baths and change your bed every day. Nothing is an effort to them. They are there to make you comfortable. You are the one in pain.

MRI/MRA normal, EKG normal. Team says to start DHE. There was always one doc that showed up in the morning and the head neuro would show up in the evening to explain what was going to happen. Everything was timed around the DHE. A half hour before, I would get the Zofran, Toradol and Benadryl. A half hour later, the DHE, only it wasn’t a bag, it was IV. Two minutes, nothing. I wasn’t laying there for two hours while the stuff turned me into a raging monster as some of you have seen (especially during the second round.) Meanwhile, I’m burning though IV sites. I finally have to get a PICC. It’s done at bedside. I don’t have to go to the Cath Lab. Right after the PICC line goes in, another nurse comes in to do the nerve blocks. They hurt. Super Orbital-both sides/Occipital-both sides. I go for botox tomorrow. All of this is done bedside. The only drawback was that I wasn’t allowed to roam around freely. (Fall risk)

Really, this is a preliminary comparison. I think I’d need another stay at Mayo to really see the difference, but some things stood out that were pretty clear to me.

• The team approach: I was part of the neurological, headache, medical team. They met every day to review my case and decide where to go. They kept me informed of their decisions and allowed me to voice my opinions.
• The team approach, while slow at first, allows them to adapt to situations more rapidly as they have taken more variables into account.
• Bedside care v. going all over the place to have procedures done. At DHC the nerve block and botox aren’t done in the hospital bc St. Joseph’s will not give the DHC docs rights to perform procedures in the hospital, thus emasculating them.
• I was on a surgical floor, but the nurses were cross-trained. Even the floaters knew how to deal with headache patients and would ask questions so that they could learn more. I’ve had to teach floating nurses how to program the IV box, I’ve gotten two fired, two CNAs fired and three nurses/CNAs assigned to other floors. We’re not even going to talk about Team India.
• Transportation to and from different parts of the hospital is much more efficient at Mayo.
• The level of customer care from triage to registration through discharge is excellent. People at Mayo seem very happy to do their jobs.
• The use of IV injected DHE for me was much more effective than IV drip.
• DHC is slow and resistant to change.
• DHC, however, has the different classes and activities.
• DHC allows you to roam freely around the unit. There are units where this is possible. I just wasn’t on one of them.
• Many DHC staff members both at the clinic and inpatient seem to simply be going through the motions. They’ve either burnt out or it’s become too routine for them.
• The food sucks at both sites!
• TV is better at Mayo. They don’t have the religious affiliation thing going.

I was in and out of the hospital here in 5 days and since then, I’ve only had a handful of clusters and migraines break out. I left Mayo with a 3-solid 3. (Maybe even a 2/3 if I’m feeling optimistic) That hasn’t happened at DHC in eons and in less than half of the time. I don’t know how long the blocks will hold, but I’m willing to give this route a try before going back to Chicago.

I’m fairly sure there will be multiple event horizon’s that will suck me into blackholes that I have tightly repressed along this journey. I am at the edge of this one and there is no escaping its gravity well. I just have to follow it to the other side. I am not concerned about being consumed in the process. I’ve probably survived worse.

The entire conversation with Dr. Dragonfly today started with a picture that I drew of myself. (I don’t draw.) The picture was me back in 1987, my senior year in high school. By now, if you’ve read this, you know that I loathe everything about where I come from. This was no exception. The only thing that was different my senior year was that I was the editor-in-chief of the yearbook. Suddenly, everyone is your friend. Everyone has an agenda. Everyone has an ulterior motive. This was no different. The plastic, resin and rubber factories were working double-time this year.

My friends were always the European exchange students, a smattering of kids my age and kids younger than me. Until my senior year, most kids wouldn’t be caught dead with me. It had been this way since 3rd grade pretty much. By the time HS came along, I pretended that I didn’t care. By then, it was a defense mechanism that worked to get me out of that horrible place. (I have an intense dislike for all small towns as a result.) I listened to European music as opposed to heavy metal, hair bands or that horrific ‘classic rock.’ I’ve heard ‘Sweet Home Alabama’ one too many times. Alabama is not on my list of destinations. I listened to Queen, Bowie, Depeche Mode, Duran Duran, Adam Ant, The Cure, Joy Division-That type of stuff. My mother though it was immoral at best because of the gender-bending and the androgyny. She just didn’t understand it. My father certainly didn’t. It was music for sissies and fags. They left my brother alone with his death and speed metal. You tell me. He’s on disability as a paranoid schizophrenic.

Anyhow, getting back to the topic, I drew a pic of myself wearing purple pants, a yellow sweatshirt with black stars on it and purple suspenders. I, like Bowie, had platinum (natural) spiked hair. I was the editor-in-chief of the yearbook. I didn’t get directly picked on. People said shit behind my back, but if they couldn’t say it to my face, it didn’t matter. They were cowards. As with all yearbooks, it comes to the ‘Most Likely’ section. When it came to me, my peers said that I was ‘Most Likely to be the head bartender at the Blue Oyster Bar.’ I hadn’t seen Police Academy 3000, so I had no idea what it meant. One of my friends told me. I was crestfallen, BUT I am absolutely against censorship. I had the power to take the caption out, but I didn’t. I think it was some sort of huge ‘fuck all of you’ in the back of my mind. I know I’m not going to get trapped in this little shit hole town for the rest of my miserable life. I will move on and see the world. I left it in the yearbook for all to see, even though I knew the entire community would be laughing at me. My armor came up and helped me pretend that it didn’t matter. I was leaving in a couple of months anyway.

My parents, completely oblivious, had absolutely nothing to say. The most likely to succeed captions were even read at graduation. When mine was read, everyone laughed. My mom and dad didn’t even fight for scholarships or for me to be valedictorian or salutatorian of the class because we didn’t have the right last name. To add insult to injury, they went home and left me at school. They didn’t notice that I wasn’t with them until they got home. (This is long before cellphones.) ‘Hey Mike. Where are you Mom and Dad?’ The jocks and cheerleaders asked. ‘They went home without him.’ Hahahahahahahahahaha. You’re not supposed to cry tears of sadness on your graduation day. The teachers tried to cheer me up. I appreciated them. Finally, Mom came back to get me after I had started walking home. (It was only a mile, but still.) She apologized profusely.

Here I am. Alone, again, among 41 peers and who know how many guests. I am not important. I am not valued. I am not loved, really; not unconditionally at least. I’m being tormented on a day that’s supposed to be happy. Finally, my mother picks me up as I’m walking home. No one even bothered to give me a ride, the good church folk that they are. I’m walking, on the side of the road. I finally get home where there’s a party waiting for me with a nice cake and everything, no friends, just family. My Grandpa tells me he’s proud of me and gives me a hug. He tells me that Grandma would’ve been too. Mom tells me she’s proud too and apologizes again. Dad says nothing. I excuse myself to go to my room to change into more comfortable clothes. I really go to my room to cry for a little while and then come back down. My mom comes and knocks on the door and asks if everything is ok. I say no. She doesn’t come in.

It’s just as heartbreaking hearing of your passing as it was of your only male equal, Freddy Mercury. You’ve given us so much over the past who know how many years. From Space Oddity to Gender bending to leading the chameleons who followed in your wake. You were always the original; never afraid to take risks or chances. It was who you were. It was part of your being, you essence. It was your genius. You, my second childhood idol, were my escape from reality if only for a little while allowing me to float around with Major Tom or be with my little China girl (boy). My parents hated you bc they didn’t understand you. They didn’t understand what you were saying. You were simply immoral. I thought you were absolutely immortal, and now you are.  Your music will live on forever (as I tear up). Good bye old friend. Take your place among the stars that you so honourably deserve. I see you more as a comet floating around space with that adventurous spirit you have, but you’ll always be connected to this little blue dot. Enjoy your rest.

• Cause love’s such an old-fashioned word
• And Love dares you to care for
• People on the edge of the night
• And Love dares you to change our way of
• Caring about ourselves
• This is our last dance
• This is ourselves
• Under pressure

May your paths cross my friends and may your wisdom and guidance return to the human race. It is sorely needed. For now, enjoy your respite in the Void.

Why the fuck do I get to play second fiddle, or third, to everyone else. I was texting with my mom, it’s better that way-I don’t have to talk to my dad-and we were having a decent conversation. All of a sudden, my niece shows up and it’s ‘Brooke’s here. Ttyl.’ WTF? I’m sure Brooke wouldn’t mind if we finished our conversations. She’s a senior in high school and can entertain herself while we talk. It’s always something though when the conversation is going to start to be a little difficult for her.

Well, it’s noon, so I guess I should make lunch for your dad. Let the lazy fucking bastard make his own goddamned lunch. He knows where the microwave is. He can open a box of cereal is all else fails. He can put a can of soup in the microwave.

Well, it’s (insert time) and Ladies Group is coming over tonight. I need to get busy and clean the house. And talking to me for another 5 or 10 minutes will affect that?

Your brother just called and wanted to know if we had any jeans in his size at the shop. So I’m going to drive down there and look. (It’s a matter of maybe 3-4 blocks) Why can’t David go get his own jeans? He can read and knows how to try things on? Oh, you know your brother.

When are you coming home again Mike? I’m not.

 

Yesterday, Dr. Dragonfly and I never actually got to the EMDR. I needed to talk about the headaches and especially this new type, the psychogenic seizure thing. I’m starting to lose strength. I have 4 or 5 headache diagnosis now, plus the 3 psychological things, the seizures and narcolepsy to top it all off. Isn’t that enough? I honestly don’t know how much more I can deal with. I’m tired of being strong and my strength is wavering quite a bit. My friends here aren’t a lot of help. They have their own lives and the cats aren’t great conversationalists. Talking with Brian over FT is nice, but I need a human with me. I need someone who is actually here to talk to. I know Major is only a phone call away, but he’s another ‘As long as Mike’s Ok, everything’s Ok.’ I need someone like Francis who will actually listen to me, understand what I’m saying and help me along. I really would ask my mother to come out for a few days, but I know that’s not going to happen. She didn’t come the last time I needed her, when I went crazy that time in rehab. I really needed someone in the house with me for a couple of weeks, but she couldn’t be bothered because of dad, or David or the kids. Dr. Dragonfly keeps asking me why I defend her and I have no answer. I’m enraged by my father. I’m angry at my mother, well, maybe more disappointed than angry and I’m furious with the entire situation. It makes me irate that they can’t seem to get it into their heads that I’m not staying out here in Phoenix because I want to. I’m staying out here because I have to. Both Dr. Urban and Brian would kill me if I stepped foot in the Midwest at this point. Two days would be enough to set me on my eventual path to rehab within a month. I just don’t know how to make mom understand. I don’t really give a fuck what dad thinks about it.

The bottom line is that the seizures are in part linked to the PTSD and major depression. They’re also linked to the narcolepsy. On top of that, they’re manifestations of the pain that I’m constantly being bombarded with because of the clusters and migraines. They’re painful and really hard to get rid of. I’ll be back in rehab in April or May. I’ll just make him put me back in in April when I see him. I’ll start paving the way in March or so.

At this point, I’m not really sure what’s keeping me going. I have the board and the blogs that I do, but beyond that, there’s not much.

This is really starting to get to me. I have this constant, persistent headache every fucking day. It’s still better than Chicago, but it’s really starting to wear me down. There are now 2 types and 1 that has starting visiting. The two are the normal cluster and migraine. I know where and when they hit. I know how to get rid of the migraine. It’s pretty easy. I pop a Frova and about 15-20 later, the migraine is gone. I’ve even had some silent migraines out here. Those are actually kind of cool. They come on with all of the symptoms, except the pain. Those, I really don’t mind.

The clusters, as usual, have set up their little schedules and don’t stray too far from them. I can typically tell the time as far as they’re concerned. My friends think it’s funny that I can say, ‘It’s 9:30.” and they’re “How did you do that?” “It’s cluster time.” I don’t think it’s so cool. At least I know what to expect during the day. These, I know well. I know their symptoms. I know when one is coming on. I feel my eye start to droop and tear. I feel the restriction of my optical nerve. I feel my forehead swell and continue down the SPG nerve ganglion into my jaw and teeth when they’re really, really bad. I know what to expect from them even the worst of them that have me on the floor screaming in pain. Sometimes they play nice and sometimes they don’t. At least December’s calendar resembles August’s. Maybe that means that they’ll settle down a little bit.

Now for the devil that I don’t know. This one acts kind of like the clusters, but there are a few key differences. It never goes away. The clusters sink into my comfort zone after 15m-3h. These are constant. My brain is always stuck on brain freeze. When one comes on, it affects my right eye, but instead of simply constricting the optical nerve, I lose vision in my right eye. A numbing sensation goes down my right arm and I lose control of my right hand. I don’t like these because I don’t know what they are, I can’t control them and none of my medications have any effect on them.

I have to email Dr. Urban tomorrow and mention these new symptoms. I don’t know what he’s going to say. While I’m much better off here in Phoenix, in Chicago all of these little headaches and whatever all melded into one. Here I feel them individually and I really don’t like it. It’s wearing me down much faster now. There are only a few things that are keeping me from buckling under the weight of having this many syndromes at the same time.