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Not one friend
That’s what she just said. I’m guessing that she’s right in some ways yet wrong in others. I’ve spent the past 2 weeks literally running for what feels like my life. I’m not crazy. There are things going on in the upside down that not everyone sees. You have to sqwint. You have to hold your breath. You have to drive to unknown towns and stand at a motel doorway with a can of Orange Crush hoping that what you’ve just done is the right thing. Gotta hang on to hope that my brain will stay sane and that I WILL make the right decisions. I”m not sure what’s going to happen next. I’m typing this out to help me deal with that pesky anxiety that I’m trying to learn how to handle. Music helps. Writing helps. I used to be able to turn to other people to talk to them to help me handle it but that choice is gone now. I’ve got to stay calm, focused and alert.
Everything is in its right place
Well..i guess it’s gonna happen maybe uh..not really sure how but it is 😉
It’s crazy to feel like 10 years just went by in a flash.
Everything.
Everything
Every
Music Stream…
Mastodon>Fleetwood Mac…that’s indicative of my musical tastes these days. I flip flop genres like um..hmm..can’t settle on one kind of music. It’s nice to be home for the day. Had 5 appointments this week but it seems as though this chapter is closing up. Trying to go to the next chapter. What will it be. Where will I go. What will I see. I know I’m entering some sort of holding pattern. Like a 747 waiting for clearance at an airport. I really should try and switch music right now, cuz I’m not really feeling this…
i’d like to write but I’m not really sure where to go in the time capsule. Things are making me feel like I’m on a roller coaster.
Before I got sick, my hubby, who is a music afficianado both in knowledge and in dj abilities, would try to play different music for me. I found myself stuck in a pattern with not just my health issues but also in my musical tastes. When I returned home from my hospital stay in 2016, I found myself drawn to much heavier music then I had in a long time. I also found a new respect for many legends I had just sort of turned my snotty-at-the-time nose up at. Now, I was blown away by the intelligent and soulful lyrics of musicians from all around the globe. Germany, Sweden, and even some of my own fair city’s known bands.
After the Ghost concert was announced and we got tickets, I started a countdown in my head. I had this many days to get ready for that flight of stairs! I came out of this illness with a brand new palate as well. For the first few months, it was like I was a child. I didn’t want anything except soup. Not only was I wanting to start a brand new life mentally and physically but also with nutrition. I had gained about a hundred pounds over the many years since starting the medicine I had been prescribed and I wanted to lose it. My hubby had lost a hundred pounds and I knew it was time to use him as an example. I am proud to say, that as of this writing. I have lost those hundred pounds! I didn’t do a lot of exercising as I was in extreme pain. I was experiencing chronic pain without any drugs stronger then over the counter aleve. Another thing I was fighting was the fact that when you stop taking opiates, your nerve endings become super sensitive. To give you an example, if you ran your foot over a bit of rug, it would feel like a rug.To me, it would feel like broken glass. I occasionally walked around the neighborhood but as I realized soon after the hospital that I was going to have to switch from the health system I was currently in, to the one that had treated me at the hospital. They wanted to do a sleep study to determine the severity of my sleep apena. This new health system also sent me to a pain psychologist, which surprised me! I didn’t even know such a psychologist existed!Â
The Swedish Invasion begins
Year Zero. Live. Ghost. The band that had won me over ever since I started drifting away from phish for a multitude of personal reasons. It would be the band to bring me through to a breakthrough that is bringing me to the next chapter of my life. It was June and they had announced they were coming to Portland and at a venue I knew I could access in my condition. It wouldn’t be easy though. I knew, that if I went in a wheelchair, I wouldn’t see the band. For some idiotic reason the venue stopped letting wheelchairs be up front, which relegates the ones coming for healthy medicine to be sitting on the side. Â They (the venue staff) don’t know that for someone coming to a live concert for medicine, hearing it and not seeing it, while it’s great, it just isn’t the same thing. To just hear a concert, not see it; I don’t think people really understand the power of music.
I went to my first concert as a young child. The first concert I chose to go see was a boy band wearing matching shirts playing to an adoring crowd of prepubescent girls screaming their heads off. Months later I found myself at a heavy metal show that would be my foray into other genres of music. This would be my salvation.
I knew, after we got front row, reserved balcony seats that I would have to walk up a flight of stairs. The year previous, I had seen ghost at that same venue. It is one of the only hazy memories I have of 2015. I started walking up that flight of stairs and it was so hard and tiring that I was forced to sit between the two sets of stairs.
I now had a goal. I had four months to get myself standing, and walking enough to park a few blocks away and stand in line, amped of course, up those two flights of stairs that would take me to my coveted seat for the best medicine there is. Live music.
The first few weeks home weren’t easy. My memory was fucked. I would get a phone call and forget what was said. This was frustrating to my poor hubby. He had nursed me from almost the entire time we’ve been together. I was able to some what nurse him when he suffered a diagnosis of congestive heart failure and a subsequent cardiac arrest a few months later but I had not been able to sustain that for very long
Surviving MOF
I woke up feeling reborn. The world seemed bright and shiny, but I realized something was up when I saw the tv diagonally up on the wall and I was wearing the wonderful hospital gown. I remember dr L sitting next to the bed and smiling at me. She kept asking me how I Felt and I just kept repeating reborn. My face felt like it was going to split from the wide grin on my face. My husband was to my left and while the pain was there, it seemed muted somehow. The phlebotomy team would come early in the morning and I remember the one who seemed to take that little bit of extra time to share a small portion of the real them. I remember thinking how wonderful their energy was towards me. They might not know how much that means when shits just hit the fan and you don’t quite have your bearings yet. I had spent the past few years thinking my life was over. The pain had consumed every aspect of my life. I couldn’t read. I couldn’t watch a tv show or movie. I couldn’t leave the house . I was scared. I was confused. I had been taught that doctors are the ones you trust. They get paid the money that allows them to pretend to care, listen and small chat about their yearly vacation to Alaska. You have to fly a private plane. To get to where this guy would go. The pills were so many. The patches took precident too. There has to be another way I thought.
The discovery channel had the Alaska wilderness tv show on, or maybe it was the gold searching one. It was my touchstone. I needed to come back. He had died on me. He was falling apart. I wanted to come back for myself. I couldn’t take my pills that morning. He had to call 911. I don’t know if I fought the EMTs or not, but I must have because I had large purple bruises all over my arms and an ugly blister that the hubby thinks was from  a strap of some sort. I also had to learn how to sleep with a full face mask while sleeping in a hospital. If you’ve never slept in the hospital, count your lucky stars. The good ole Doctor g, I guess, didn’t know, or ask the right questions, or I didn’t tell him, or maybe we didn’t know what to look for, but I was experiencing what is called sleep apnea. Many people have it. I wasn’t aware of it. You stop breathing while sleeping. I had noticed that I wasn’t dreaming and I missed it terribly. I remember asking the hubby if something was wrong because I wasn’t dreaming. I also had the clock. The clock test, it kind of saved my life too. It stuck in my head that if you couldn’t draw a clock, that something’s wrong with you. I repeatedly would draw that damn thing. Small notepads had my attempts on many pages. I would later, after getting out, ask the hubby if he still had those notebooks. I remember asking and him saying no, I threw them out. That’s probably for the best, as moving on has been one of the best drugs there are.
Darn it all to heck. Frick
I just don’t get it why people have to die. I mean I know thaty have to at some point. But why do the people I KNOW have to die. At least the first bad thing this weeek was a small fire at one of the biuldings that my boss takes care of, then came the second thing, an office blowing his brains out in front of another building that my boss takes care of and now this. Roger, the guy that remodeled my entire bathroom, he was my confident for that whole time..well he’s gone and up and died from something relating to the lungs…i just can’t believe it. I”m somewhat in shock and have tears. Hopefully writing about it here will help me feel better faster then later. I just can’t beleive he’s gone. I wanted to talk to him at least one more time! You never expect someone so fully of vim and vigor like he was would just flat out die with no warning. I guess it had to do with cigarettes. He did smoke a lot and he did cough a lot when he was remodeling the bathroom but I figured that just came with the territory of putting up insulation and working in an enclosed room. May you rest in peace roger. Thank you for the wondrful bathroom. You’ll be missed.
My Captive Gaze Inside Your Eyes 