19 months

It’s now been 19 months since my mof. And i still to this day wonder if I’m getting better. Am I back to what I was before. Will there ever be a ‘back’ to who I was before? I guess the answer is no, because who I was before the malfunctioning organs is in no way shape or form recognizable to me right now. I still have anxiety, but going out to a show by myself doesn’t have the scary factor that it used to have. I still stumble on words and now I”m having teeth trouble and i sound like a serious dork. I can’t stop sleeping either.

How do I explain to someone the magical things that I experience. I can’t really talk about it anymore and that some what pains me. I’m not used to not being able to share the amazing things that are happening but Im starting to realize that is how it has to be from now on. I have to accept some things with this current change in my life. Bigger things that are not in my control are happening to me and that’s well, a bit strange. I’m just trying to hang on and learn how to have patience. Right? Right.

I’m very curious about life a little bit today. I’m finally seeing the end of the tunnel Im in when it comes to cleaning up this house that I’ve lived in for 18 years. 15 of those years are starting to feel like a wisp in the wind and I’m happy about that. It sometimes feels as if it didn’t happen but then I’ll see something and woosh I’ll get a serious memory. Today I cried in bed. One of those deep cry’s that shake you to your core. I couldn’t identify the reason for it. I’m honestly doing ok deep down under this depression that I’ve got right now that I attribute to the time change. Why do we do that again? It’s back to an Oregon winter. The gray. I ran outsdie the minute I saw the sun and Im starting to wonder if I can handle an entire winter here on my own. I’ve always had roommates. Even from the moment I bought this house. I guess this is what I’m supposed to work on right now. Doing things my way.

I’m alive and I have a soul…

 

If we’ve only got this life..

It’s hard because I’m living so much in the future right now. I think I’m in the midst of a depressive episode. I can’t stop sleeping or eating. At least I’m starting to learn the healthier and lower calorie things to snack on. My anxiety is lessened. I even went and hung out by myself in a public place. That was a tough one for sure. To be sitting at the bar and looking at all the people hanging with other people. I do not like it, but I can do it when I want to play galaga, which is pretty often. I’m quite addicted to that game.

Stuck, In a lift.

That’s where I am right now. Stuck in between worlds. THe old me vs. the new me. I’m definitely enjoying the new me. THe after mof me. I was gifted what seems to be a 50% shot of living after multiple organ failure. That’s kinda scary. My dexterity in my fingers is starting to come back. My words to get stuck as often as they have been and im about, oh, a year and a half out from near death now.

The magic is there still. So is the Bliss. I realize I’m not talking about it as much but it’s becoming more personal to me I suppose. Something that doesn’t need to be shared about anymore. I realize now that there are things I need to keep to myself. That is another new lesson I’m learning. I’ve repeated this often, that I feel like Im a college kid just because of the similarities of the things I’ve had to and still need to learn that I remember needing to learn my freshman year of college. That I didn’t learn nor did I need to but I feel the urge to try and better myself. I want to find a career I love and spend 20 years doing it. I want that to be in music.

I want to get a job. I don’t know doing what and Im thinking I might need to go to school for that. I will open up a path for that to happen I suppose. You’re never too old to learn right? I seem to be making 2 days a week at the studio pretty easily now. Sunday is a hands on meeting for us interns to learn more and I’m quite excited about that.

I’m shadowing tonight at a dance club and I am excited about that. It’s the leap between learning and actually doing that I’m having anxiety about. Now that I”ve put it out there, the fear that I have about that step in life, hopefully the anxiety will lesson. It’s hard being anxious about EVERYTHING. It makes life, well, a little difficult.

I need to find software on how to run a server that I can underestand and teach myself. Or find someone to teach me. I need help on that one universe.

Thanks yall for reading. Its kinda cool knowing theres a few of you out there ❤

Bliss

It’s hard to put into words what it feels like but it can sometimes come in the form of a pill, a powder, a liquid, a note. Which one of those sounds like it just might not hurt you? It’s nice to know that I’m actually feeling this way from listening to music. Most nights. When it’s quiet in the world and only about 9 million Swedes are awake (and the occiasional night owl like me and caligurl over there in tumblr land)I remember I’d take my dose as soon as I woke up. I don’t know if I knew I would have withdrawl from the opiates or if I just wanted to feel that rush and not even let it get to that point. I guess I loved it so much. And of course it helped take the edge off. You start to feel like you are on a slow incline up a roller coaster only you are floating in a soft cloud of something that makes you feel weightless. You know what euphoria really means. I don’t know exactly when I gave up. It was somewhere in 2013 or so.

26 members. 9-7-2017

Made the first poll. I’m seriously having too much fun testing the functionality of the board n shit. I know I can just go public but I want to try and build up some of that momentum. I do just now wonder though. Did I pull the trigger too soon? I’m the queen of that. Jumping in too fast and forging ahead trying to make a trail through the woods only to find myself at the edge of a cliff or trying to push through too thick of brush. And just stopping. Or being forced to stop by something completely out of my control.

My brain is coming back. My words are coming back. My writing is coming back. I’m 16 months after the near death experience. I wonder sometimes if I’m just making excuses by saying I’m recovering or if I’m fitting into some predetermined shape that everyone goes through when they experience what I experienced.

I am really hoping to hear from another of the ghouls but I fear that may not happen. I need to change that train of thought and get back to him. Whoever, whatever he is.

I want to at least thank him though. Because he gives me the bliss that I used to seek out sometimes by taking an extra pill here or there. Listening to a song, and feeling the way I do when certain sound waves interact and move through the air needs to be bottled. It needs to be shared with the world. I feel like a unicorn on a rainbow colored cloud of cotton candy. How’s that for a visual 😉

All these things that I have done

Its hard to look back and see the progress when you are in the midst of a change.

April 29, 2016 I was taken to the Adventist hospital in the midst of liver, kidney and respiratory failure. They couldn’t take me which I find really ironic when I pass their billboards that tout how wonderful their ER is. Instead I ended up at Kaiser in Clackamas county. I should have stayed in Portland, and I will regret the fact that I had no say in my treatment or where I was taken and that once again my ex-husaband made a decision that will have repurcussions to my dying day.

That isn’t the focus of this post though. The focus of this post is to remind myself how far I’ve come from then. See, when I was taken into the hospital I weighed 335 pounds. All my life I had been called fat. People would yell ‘fat ass’ out the window of their car when I would walk down the street.. On the phish (that band from vermont that some of you might know) newsgroup rec.music.phish (newsgroups were the precursor to Facebook groups I suppose). But the difference is there was absolutely no moderation what-so-ever. It was the wild wild west of communities and I was a pretty well – known poster as I had either a job where I could be online all day, or I wasn’t working so I spent almost all day, every day online posting about Phish. I somehow gained a troll (i would find out later that it was a large group of people acting as one signle troll) who would write stories about me eating people. And make fun of the fact that my health had deteriorated into me needing a wheelchair just to go to a live music concert. The bullying continued into my 30s until I eventually had to leave that internet community that I had thought was accepting of all people but would actually be one of the most creul and unforgiving communities I’ve ever encountered on the internet and I’ve been part of an online community or two, or three for over 22 years now.

I digress.

Now, I’m 100 lbs down. Yup. I’m outing my weight on the internet. I weigh 235 pounds. And I wear a size 12 in some clothes and in others I wear a 3x depending on the manufacturer of the item. How on earth is anyone supposed to feel normal wearing such an array of different sizes? Epecially in a society that places so much value on that damn number. How is anyone who is self-conscious in any way supposed to live with themselves and their weight when our clothing manufacturers won’t even give us a regular size. Now guys clothing is measured in inches. You know the waist size. You know the length and that is the way it is no matter who makes the clothes. Talk about a punch to the face. To me it seems as just another way to control us.

I digress again.

I decided a few months ago to let someone move in as a roommate. I let him stay for free for a few months. I wanted to see how we got along. I wanted to open myself up to a new person. Well that fell apart the other day. I no longer felt safe with him in the house and had to run. I had to walk down the block, call for a Lyft and go pick up my car that had been impounded when I suffered multiple anxiety attacks and memory issues relating to the PTSD and anxiety that I can now trace back to my early childhood. That brings me to mom. A mom Who decided to tell me that because i pushed away this roommate, that meant I had no friends. Never mind the 15 messages on messenger that I recieved when I let people know I had to create a whole new fb profile. It’s amazing what the internet does to people. For people like me, it can destroy them with just one sentence. For others, like zev for one, or Bee for another, and even darryl yes, I know you are all behind things. I know there are others involved too, but that won’t last forever. Karma is a real thing. A very. real. thing. And you’d better get ready to face YOUR demons because I’m facing mine right now, every single day when I wake up and I hurt. When I sit for 15 minutes and can barely move after that 15 minutes because the stiffness is so bad.

I have digressed again.

Honestly I guess I’ve lost focus on what this entry was supposed to be about. I guess it’s about freedom. The freedom to be who I want without my mom telling me that I have no friends. When I disappeared a few weeks ago due to some circumstances almost completely out of my own control, I was found with one shoe and sock and a bare foot on the corner of Division Street. The police found me, put me in an AMR ambulance (mind you this is the 2nd or 3rd time these wonderful folks have, oh wait, it may even be the 4th time that they have come to my rescue when it’s been a life-threatening situation). See, I suffer from, wait again, I don’t like to use the word suffer. I have anxiety (and PTSD) and Im despartaley trying to control it without relying on medications.

There we go. It’s out now. I have PTSD from an alcoholic father and a controlling mother who wants nothing but to dangle my strings in life like the puppets in a kids theater. It’s from the bullying that began in 3rd grade that continues to this day when I went to the Coldplay concert and I realized that SOMEHOW, some of these people KNEW that popcorn was a trigger. Somehow they KNEW the things that triggered me to have a panic attack. I may never know how that was the case. I will just continue to look down at the love button that some of you may have recieved if you were at that Concert. From what I have been able to glean, not everyone got one of those buttons.

She told me this morning, after I had called her to let her know I was safe. She told me I hard pushed away the only friends I had. Because I didn’t let this man, a person I did NOT feel comfortable with, stay living in my home. She didn’t believe me that I had been able to procure my car from the impound lot. She just sounded pissed. After being missing for a few days, maybe even a week total, Then reappearing. Then disappearing again, she was pissed. WTF mom. What. Is. Wrong. With. You. You didn’t teach me how to handle my emotions. You came from the school of push those emotions deep deep inside and dont let anyone see you cry. Not ever. There’s no crying in baseball afterall.

Needless to say, this posting has jumped all over the place. I started it because I’m going to try and lose another 50 lbs and today I downloaded an app to keep track of my calories. That’s how I lost the first 100 lbs. I found out how many calories I burn at the weight I’m at and then I ate less. I didn’t even excersize. I am doing bother now. It’s different now though because I have a goal. I want to tour with a band. I want to find a band that will take me on to help them in some way. Whether it’s to drive the van, or even just make some home cooked food while at the hotel. It may be a pipe dream, but it’s my dream. And i’m going to keep fighting to make that dream come true.

I started watching a youtube red documentary about Lindsay Sterling tonight. The dancing violinist. I had never heard of her before, well at least not that I can remember and she is someone that I admire greatly. She is fighting a food issue just as much as I am fighting one. (She’s also facing the death of her father which is something I dealt with at the age of 21) I have a tendency to eat my feelings. When I’m sad, I want pizza. When I’m happy, I want pizza. I would eat pizza for every meal of the day if I could. And trust me, I have before, for months at a time. That was how I got up to 335 pounds. I was stuck in a loveless marriage that had died right around the day before our wedding in 2004. Don’t get me wrong. We had grand times. But I had followed in my mother’s footsteps and found myself in an abusive relationship. I can’t go in depth into that part of my life until the divorce is final. I will get into that one day though. So keep an eye out on the blog. I finally got out of the marriage a few months ago and the moment I recieved that restraining order my life began down a path that I am happy to say is probably some of the best times I’ve ever had. I have hope that the next few days will cement a future. A future that I have been dreaming of. Some of that will require hard work. I used to walk almost every night. But I slacked off. Gained some weight and today I put myself back on that path to getting healthier. I really do love green beans! I really do love tofu. OMG a tofu scramble? Yes please! Scrambled cheesy eggs? Yup. Throw me that protein. I’ll eat it.

“it’s time” as the announcer before an MMA fight would say. It’s time for me to start the rest of my life. And I hope that includes you” I may have even prayed that it would include you.

Oh I forgot to mention one thing. I exist in pain. Chronic pain. It hits when I least expect it. No one’s ever been able to tell my why. I just have come to accept it. After 14+ years of controlling it with opiates, I have moved forward to handling it with alternative treatments. Yoga. A TENS unit. Just plain ole fashioned grit and determination. So if you know who I am, and see me walking down the street on your neighborhood (sometimes its a button that says I heart nerds, sometimes its a button with a smiley face and a bleeding head wound and sometimes it’s a “love” button) remember that what you do, in those moments when you pass a stranger can sometimes last a lifetime. That person who yelled ‘fat ass’ out the window at me in Birmingham, Michigan has permanently damaged me and I’m betting he is proud of that. I have faith though that Karma will bring everything into balance.

Change. The only thing that’s constant in life and in reality and I’m in the midst of a big one. Watch out world. This wily fox is on the hunt, on the prowl and is ready to take on the world. And I will gosh darnit. I will.

I spent 7 days in the hospital. 3 of them in the ICU. I had a tube down my throat and was given narcan to combat the opiate withdrawal I had to go through to put me on the road to recovery. As the fourth day came around. I was somewhat used to the early morning intrusions to both my skin and my sleep. Late morning rolled around and the physical therapist came by. She wanted me to walk down the hall. I was on oxygen thanks to the respiratory failure caused by what I guess is the liver failing to clean out the opiates on my system so  depressed my breathing. I expected to have no problem walking but as the woman pulled the portable oxygen tank around to my right side, I swung my legs around and slowly put weight on them. It was a shocking surprise to find myself very weak and scared at the same time. I stood up, wobbled a bit, and gathered myself to make that first walk. Before this hospital stay, I walked from my bed, to the chair, and to the bathroom and that’s it for the day. I couldn’t draw those clocks. I was fucked for the rest of my life I had thought. But getting clear if those opiates, I knew immediately that I had a second chance (or is this the second?). I walked about halfway down the hallway, turned around and walked as strongly as I could and when back at my room, I collapsed in the bed in relief. This was going to be hard.

The day passed and so did another one. Mentally I was recovering faster thaen physically. I had been misdiagnosed with an auto immune disease and treated with steroids, nsaids and opiate pain medications.

I woke up on that last day in the hospital knowing that it would be my last day. I had been on furosemide to help flush out my kidneys after they failed and was finally off of them. They are not a fun drug. They make you urinate numerous times an hour, but is necessary if certain organs aren’t working correctly. My last dose had been the day before and my last test would be to do the stairs. I’ll admit it now. I was scared to death to attempt them. I was not only weak from the 6 days in the hospital, which causes you to lose a large percentage of your muscles, but I was recovering from years of complete inactivity due to weight gain, depression and anxiety. Along with having to try and walk and climb stairs, I had to work out a plan to get durable medical equipment from a company somewhere in the city,

MOF…

I went to my first concert as a young child. The first concert I chose to go had 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 not pop music which would be my salvation. 20 years of following phish around had slowly eroded into the incapacitated state I found myself in when the organs began to shut down and my breathing became compromised.

I spent 7 days in the hospital. 3 of them in the ICU. I had a tube down my throat and was given narcan to combat the opiate withdrawal I had to go through to put me on the road to recovery. As the fourth day came around. I was somewhat used to the early morning intrusions to both my skin and my sleep. Late morning rolled around and the physical therapist came by. She wanted me to walk down the hall. I was on oxygen thanks to the respiratory failure caused by what I guess is the liver failing to clean out the opiates on my system so  depressed my breathing. I expected to have no problem walking but as the woman pulled the portable oxygen tank around to my right side, I swung my legs around and slowly put weight in them. It was a shocking surprise to find myself very weak and scared at the same time. I stood up, wobbled a bit, and gathered myself to make that first walk. Before this hospital stay, I walked from my bed, to the chair, and to the bathroom and that’s it for the day. I couldn’t draw those clocks. I was fucked for the rest of my life I had thought. But getting clear of those opiates, I knew immediately that I had a second chance. I walked about halfway down the hallway, turned around and walked as strongly as I could and when back at my room, I collapsed in the bed in relief. This was going to be hard.

The day passed and so did another one. Mentally I was recovering faster then physically. I had been misdiagnosed with an auto immune disease over a decade earlier and treated with steroids, nsaids and opiate pain medications.

I woke up on that last day in the hospital knowing that it would be my last day. I had been on furosemide to help flush out my kidneys after they failed and was finally off of them. They are not a fun drug. They make you urinate numerous times an hour, but is necessary if certain organs aren’t working correctly. My last dose had been the day before and my last test would be to do the stairs. I’ll admit it now. I was scared to death to attempt them. I was not only weak from the 6 days  in the hospital, which causes you to lose a large percentage of your muscles, but I was recovering from years of complete inactivity due to weight gain, depression and anxiety. Along with having to try and walk and climb stairs, I had to work out a plan to get durable mnedical equipment from a company somewhere in the city, My O2 stats were low and they were requiring me to have oxygen when going out of the house.