Esther Tela Free speaks

You woke me up

Another plug in the wrench was my insurance situation. If you’ve never been chronically ill, you may not understand the hoops we have to jump through in order to get care. The doctor I was seeing worked out of a certain health care system. That system did not give me options such as physical therapy, or seeing any sort of psychologist. Due to the lack of hospital beds the day I almost died, , the hospital transferred me to another hospital in a completely different health system. Because I wasn’t a member of this hospitals system, I had to find an equipment company that would rent me the equipment. Somehow, due to the diligence of my team at kp, I spent the last 15 or so minutes of my hospital stay with a rep from one of two in the city that I could use. The hubby and I were relieved to have me rolled out of the hospital with rather proper breathing machine for me to sleep healthily. I remember sitting in the passenger seat, at dusk, with the window rolled partway down, feeling the breeze on my face and watching the pinkish colored sunset sky to the left of me. We drove steadily up the highway and soon I was home.

I knew, after we got front row, reserved balcony seats for my new favorite band, 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. 

Things were bad in 2016. I mean really bad. I was completely losing my marbles. You start to wonder whats going on. I’m not talking about crazy like thinking someone’s in your computer crazy though. I’m talking about how I couldn’t draw a clock. K would say, draw three o’clock and I couldn’t.

I now had a goal to help me recover from this experience. 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.

The years I have had to use the wheelchair, prior to my hospitalization, are a mix of frustration and the desire to get my musical medicine without experiencing the major stress that comes with traveling and using a medical assistance device. Unfortunately, at a major music venue in the Pacific Northwest, I experienced one of the worst experiences at a live concert. And I’ve seen one band almost a hundred times and not just in one state. I got to the hotel in the city near the venue and made it to the campground in the rv we had rented. When we arrived at the campground the campground guy did not flag us into the handicapped camping section. He put us up into a top section on a decline and the paths were made of gravel. To someone in a wheelchair that is like saying we don’t give a shit that you are here. That was the first indication that this trip and concert just might not be the experience I was used to having. The day dawned bright, warm and cloudless and I looked forward to having a wonderful time and tried to have a positive attitude. As we got ready to head to the show is when I noticed the gravel and realized I would have to walk. In the condition I was in, that was a hard thing to do. And I was fighting the urge to just crawl up and die. I was already embarrassed enough to be using a wheelchair but I was also fighting a confidence issue as I had gained significant weight as a side affect from the steroids. I got down the hill and waited at the bus stop for the handicapped bus the venue provided which I am thankful for. I was loaded into the bus when it arrived and it was my very first time in a handicapped bus.

I would like to say that all of the other handicapped people that I have met in my concert travels have been wonderful human beings.

As the lift rose up, I rolled into what I thought was the area to be. Now my memory is fuzzy here, either he didn’t strap me in, or I said I was ok, I’m not sure. But what happened next, I won’t forget. The bus driver got into his seat. He pulled the break and the bus slowly rumbled to life and out the gravel road. At the stop sign, there was a small hill and as he stopped, my wheelchair violently rolled forward and smashed into either the seat or another wheelchair in front of me. I untangled myself and rolled back into my spot. As I did that I realized that my wheelchair had been damaged. Wheelchairs are expensive and mine hadn’t been covered winsurance and knowing I would have to order a new one, mine was a special light weight one,I would have to fork over the cash out of pocket too. I compartmentalised the issue and tried to look forward to three hours of music and bliss that came along with live music. We were drive to the back gate entrance and since I was very early and the only wheelchair, I figured I’d be ok, but what I didn’t know at the time, is at this time, they did not have a section for wheelchairs. I asked the security guard about this. He smiled widely, took ahold of my chair and wheeled me right out into the general admission area in front of the stage. The live concerts I usually go to, have rabid fans that wait hours so they can hang on the rail, right in front of the band. I knew this because I used to be just one of those persons. I spent many hours waiting in line at venues across the country. Madison Square Garden in NYC, The Mothership in Hampton, Va just to name two of my favorite experiences. When I was wheeled out to the GA section, there were already rows of fans claiming their spot for the show. I was a pretty meek person back then, and didn’t have the wheelchair experience yet to know I was not in a good spot to enjoy this concert. I had such a horrible time, and felt it was so wrong that they didn’t have a handicapped section at GA concerts that I contacted the state where the venue was located and put forth in motion a lawsuit. I wimped out about it, but I found out years later, when I returned again to give them another shot, they had a wheelchair section and I’ve since enjoyed a few shows there.

Before I got sick, my hubby, who is a music extraordinaire both in knowledge and in dj abilities would try to play different music for me, and I found myself stuck in a pattern with not just my health issues but also in my musical tastes. When I returned home, I found myself drawn to much heavier music than 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….

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April 7, 2017 Posted by | ankylosing spondylitis, anxiety, death, fibromyalgia, hubby, Memories, MOF, music, pain, phish, reality, sickness, The Gorge | Leave a comment

Reality hits me in the bum

Reality hit me in the face when I found out who’s really behind it all, behind ‘the stalker’. I never in a million years would have expected it to be who it is. And of course they are so low and so obsessed to have even found this blog which isn’t even easy for ME to find. Let me catch you up to date. For about 3 and a half years I have had a stalker online.  It started on rec.music.phish where I was a well known poster and then followed me no matter where I went on the internet. Every new name that I was use, they would find out. I used to think it was one person, found out a few of the people it was, but now, it’s different. One person is doing it and we have been able to use ISP’s to find out who it really is behind the whole thing. This person was someone that I trusted and know well from Phish tour. In fact Ive spent hours with this person and it’s amazing to me what double sides people have. My good ole husband was WAY ahead of me and had it figured out before the IP addresses proved who it REALLY was. The great part about all of this is I just dare them to try and find me again and try and post horrible things again.  They will, I have no doubt. The great part that I was just talking about, I finally figured out that it’s funny to make fun of people with diseases on the inside and it’s even funnier to make fun of fat people. Not, but that’s what they were doing to me. I mean don’t get me wrong. To these people, being fat and having a diseas that has no physical symptoms besides weight gain makes me a target about as funny as John Stewart on a good day. I don’t care anymore and this shall be the last time ‘the stalker’ is ever spoken about and hopefully the last time it’ll be in my brain. I’m puttin’ it in a folder and into the locked file cabinet of my brain of things int he past. It’s time to move on for all of us. I know you are reading this stalker. Just stop it. You will have so much more time for yourself. And it ain’t workin’ on me anymore so either quit, or find a new victim. Hopefully one that catches you before the end and can prove what a complete and vile asswipe you are. You have done nothing but heap lots of bad karma upon yourself and it sounds like it’s starting to kick in. Have a fun ride on the way back down.

June 18, 2007 Posted by | ankylosing spondylitis, e-friends, hubby, karma, phish, reality, stalker | Leave a comment

Quest for Enbrel

So there is a medicine out there, that for 10 years, have stopped the symptoms and permanent bone damage of people who have rheumatoid arthritis from suffering from their symptoms. Their hands stop becoming gnarled, they are able to go back to living a normal life without 15 pills a day. This same exact medicine has been approved by the FDA for my disease; Ankylosing Spondylitis. For the past 5 years. People with A.S. have been taking Enbrel and its been able to stop their symptoms as well. The bones aren’t calcifying. The joints aren’t falling apart (like my kneecap just did) and the 24/7 pain in the spine and the sacro-illiac joints are either already calcified so they don’t hurt, but this medicine can stop that calcification from happening. To be honest, I’m not all that eduacated on exactly what the Enbrel does for the A.S. but I can fix that in about an hour. All I know is that the medical studies that I have spent hours reading, say that ENbrel is one of the top medications to help stop the progression of my disease and help cut pain levels. The same things that my meds are supposed to do, well, my meds now don’t stop the progression of the disease, they only take care of the symptoms.

That’s why Trey’s Sand hits so close to home.

It’s hard not to get bitter and angry when Enbrel calls my home asking how my treatment is going. For some reason unknown to me, they think that I am taking the medicine. They don’t know that I can’t afford the 800 a month co pay. And since I have insurance, I dont qualify for any of the other prescription help programs that there are out there. Even Montel’s doesn’t do me any good. It’s hard to live with the knowledge that there is a medicine out there, that has an 80% chance, of putting me into remission, stopping the progression of my disease, and it would also give me back my health. My life before my flares started.

Tell me how you’d feel if you knew the medicine existed, have spent 4 years trying to get it, and the company still calls to ask how the treatment is going because they are so big they don’t realize that they ‘arent’ helping everyone get the medicine like their big huge advertisements on tv say. They don’t help everyone. I’ve literally slipped through the cracks and thanks to PHC I work 32 hours a week, when I am healthy enough, and they don’t fire me when I’m sick and need to stay home.

It’s hard not to be bitter, but of course check out what was in my email today:

The nature of bitterness is rooted in the fact that the pain we feel provides us with a rationale. We may feel that we deserve to embrace our bitterness to its full extent. And to be bitter is, in essence, to cut ourselves off from all that is positive, hardening our hearts and vowing never to let go of our hurt. But just as bitter feelings can be self-defeating, so too can the release of bitterness be life-affirming in a way that few other emotional experiences are. When we decide that we no longer want to be bitter, we are reborn into a world filled with delight and fulfillment unlike any we knew while in the clutches of bitterness. The veil it cast over our lives is lifted, letting light and warmth touch our souls.

I’m gonna be a little bitter today..but later on today..im gonna feel a whole heck of a lot better..

and if you know anyone who can get me help with a copay for the medicine Enbrel, give me an email or a message through here…it would change my life forever..

March 14, 2007 Posted by | ankylosing spondylitis, enbrel, FDA, reality | Leave a comment

Pain levels low major tom

So I don’t know if it’s the return to work, the exercise I’m getting through the physical therapy for my knee or the letting go of a lot of hatred and anger but I’m having lower pain levels. The new drugs are helping with the anxiety and scariness that I sometimes feel and I’ve been sleeping like a baby. I have my dreams back too. I know that I am having them, but I’m not remembering them. I’m going to try this weekend to wake up and immediately post what I remember here in the esther blog because this one is pretty incog (well hopefully, but if you know who I am, this is the blog I bitch about my A.S and my health just so you know). I want my dreams back. I don’t even know if I said that to my doctor or just said it in my head. I do know I posted it on the blop.

Goin to hell in a bucket baby, but at least I’m enjoyin the ride.

The blop has been a haven for me. I hope that more people stick around. It seems to be getting busier to me. It seems the perfect size. If you take a few days off it’s slow enough that if you respond to posts from yesterday, the people who wrote them sign on and notice that someone is responding. I think it’s the best size, even though I have this feeling that something’s going to happen and it’s going to get noticed. I hope that snigs is doing well health wise. You are in my prayers snigs!

Can’t think of a place more perfect, or a person as perfect as you.

The hubby is at work today and I get the entire day off to do whatever I want. I’ve decided to take care of the housework first. Emptied the cat boxes, cleaned the bathroom. Swept the kitchen and bathroom floor, took care of some dishes and lit some incense. Oh and of course put on jam on. I swear that sattellite radio is a gift from heaven.

At least I’m enjoyin the riiiiiiiiiiiiiiiiiiiiiiiide.

I wonder if I’ll ever be able to talk about that night. What I heard on NPR. What seemed to be the future. Going around all those roads. Seeing people I recognize trying to hurt me. It was as if a dream became reality instead of it being a dream within reality that isn’t reality. I seriously feel that if I could write it out into a script. It would make a great movie.

I can’t remember what inspired me to get in the car. The hubby fell asleep and I just said I’m going to micky d’s and all i have to do is eat a few chicken nuggets with the honey mustard sauce and some fries. All I had to eat was 4 nuggets and 5 fries. It was that specific. Everything seemed to be set up as if it were meant to be a path. All I did was look straight ahead, drove the speed limit and listened to NPR. I would say something out loud and I would receive an answer on NPR and the answer always had choices. I had to make a choice and even then, if I were afraid to make the choice, I had help making the choice. It wasn’t anyone’s voice. It was an inner monologue of my own. Kinda like on Scrub’s. I would vocalize my thoughts. As I was eating the chicken mcnuggets I was forgetting to dip them in the honey mustard and so on NPR, a show began that showcased all of the wonderful sauces that were inspired by Asia. And how it’s best to have them with other kinds of foods because that is how they taste best. You don’t pile honey mustard onto a french fry, you dip it in and get just a little bit and then together, the two tastes combine and its nummmy. That is pretty much what I was doing for the first maybe 20 minutes of the drive up to the mountain. I was noticing lots of white lights everywhere, as if it where still christmas time even though new years eve had passed. I knew it was January and after the visit to micky d’s and hearing from the two kids that a comet was in the sky, I had made the decision to just drive up to mt hood. I had done this once before in 1999. I hopped in sunshine, the vw that i used to co-own with a friend and camped up on the mountain all by myself in a tent. I knew i had to do this camping experiment on my own but to be doing something simliar almost 8 years later, it didn’t seem like such a strange thing to me, while it freaked everyone around me out. I guess that’s because I expect people to know what’s going on in my head but forget that they dont know unless I tell them.

As I drove up and up the mountain, which takes about 45 minutes to get to, I have absolutely no idea where I went. NPR pretty much directed me and as I hit a certain elevation, the NPR channell fuzzed out and I was listening to what sounded like NPR in the future. I was hearing things that weren’t happening in the reality down the mountain and I thought to myself, I must be getting a glimpse of the future. That everything will be all right if we just keep talking to each other. That there was a new religious person in the government. Someone who would speak for all religions. I can’t remember what they called this person but it helped bring together the entire world into peace because each religion had it’s own speaker. I wish I could remember more but it was an interview and I was in so much awe of what I was hearing that it was all I could do to keep driving the 15 mile an hour curves as I drove up and up the mountain. There wasn’t any snow for some strange reason. We must have had a short warm spell that kept the snow off of the higher elevations that would usually require chains for driving. After the food show about the honey mustard and asian sauces, and the NPR interview with the religion ambassador from the United States, I was closer and closer to the top of the mountain. At one point I went the wrong way and was thinking and saying “help” I don’t know which way to go. A white car or pick up truck would show up and would go one way and I would follow and they would then disappear. Some of the darker elements of the world were also involved in this dream reality. The darker color cars would try and block me from going places. Not once did the police seem to see me as acting any different and the people in the lighter color cars were always smiling and waving and so I knew I wasn’t encroaching into or onto anyone else’s space or bubble as I like to call it. Its not a coincidence that the sattellite radio just finished playing a song from a phish show that I would call ‘my show’ while I was writing the above words. There is inspiration and muse right there in music.

Thirty days in the hole. Newcastle Brown can sure smack you down.

As I reached the top, well, what felt like the top of wherever it was I could go, I came to a fork in the road. I could either go up and to the right, or down and to the left. I figured I’d take the higher road and so I veered to the right. There was a gate, but the gate was open and I knew most people in this part of the world and area are pretty much nice, especially if the gate is open. I also didn’t have any other way to go and so I needed to turn around anyways and figured this would be the best place. The funniest thing was that I really needed to go to the bathroom and I just happened to light up a porta potty as I was swingin tela into a circle to head back down the mountain. I thought I had already started to make my turn but for some reason whenI saw the girl and boy that was in the garage, they started to walk towards me and I realized I hadn’t started to turn, I had actually driven towards them. They came to me and I tried to explain that I was lost and needed to go to the bathroom, but I couldn’t get out the words. The two people looked really familiar. So familiar that I felt as though I was in some sort of trance. I said “I don’t know why I’m here.”

The girl with the straight blond yellow hair, she looked about 19 or 20 asked me what my name was. I thought that was a little odd but hey, I figured wtf, why not. “Marnie”. I had spent the evening playing on the internet and had been using my nickname instead of my fullname and so I figured I’d just tell her my name was marn. She said how do you pronounce it? I said ‘Mar nee” She seemed to be happy at the response and smiled. “You can go back now” she said. I kinda jumped, startled at a stranger saying something like that to a stranger. The boy that was with her was also very familiar looking. He looked about 19 or 20 and had black hair very simliar to the hubby’s hair. It had been like seeing myself about 20 years younger living life with the hubby. Building a house up on the top of Mt Hood. I didn’t know if I was in the future, the present or the past because of the NPR strangeness. They were not reporting on things that were happening in the reality that I had been in at the bottom of the mountain and so I felt like the things I saw once I reached that point up at the top of the mountain as in a different time. I had a strange feeling in my stomach that it was sometime far in the future and I was seeing a parrallell universe that was existing just right down the road from me. I had been reading a lot of physics on the internet. I had spent hours watching physics professors teach me that they have figured out how the universe works. According to them, there is another universe just like this one, but its only a fraction of the smallest thing you can imagine away from us. Its the negative universe. And sometimes we can fall into that and bad things start to happen. Music starts to sound off key. Things go bad. Theres war, famine, disease, destruction, everywhere and no matter where we are in our world we can accidentally slip into that parallel universe. I wish that a website would appear telling me that what I’m writing makes sense but I have to go google to make that happen so brb

here ya go:

Everything you’re about to read here seems impossible and insane, beyond science fiction. Yet it’s all true.

Scientists now believe there may really be a parallel universe – in fact, there may be an infinite number of parallel universes, and we just happen to live in one of them. These other universes contain space, time and strange forms of exotic matter. Some of them may even contain you, in a slightly different form. Astonishingly, scientists believe that these parallel universes exist less than one millimetre away from us. In fact, our gravity is just a weak signal leaking out of another universe into ours.”

http://www.bbc.co.uk/science/horizon/2001/paralleluni.shtml

whats interesting is the date : 14 February 2002

March 9, 2007 Posted by | ankylosing spondylitis, anxiety, e-friends, grateful dead, kneecap, mt hood, music, NPR, pain, physics, positivity, reality, sickness | Leave a comment

Sickness

deifnitely has two meanings..

it can mean the most meanest sickest sickness jamming of the band named moe.

Or it can be a subluxating kneecap aka patellar. Guess there was some sort of tear, but not sure about that one. Still waiting for the email with the xray. I can’t believe I’m finally getiing a cool xray. Kinda sick I know but when you are fighting a disease, and you grab proof of if, a picture, you really want to own a copy of one. I have a feeling itll arrive sooner then later.

It’s nice to be off the crutches for the day. Now I iknow that it’s hyperextention that is causing it I need to go google what to do for that. I get the weekend for rest and then its back to healing the knee again. I’m so thankful of my life right now that I can honestly say I’m happy even with an injury like this one.

Damn that jam was just sickness

February 26, 2007 Posted by | ankylosing spondylitis, kneecap, moe., mpe/, music, patella, sickness | Leave a comment

Pain, pain really isn’t very much fun.

SO today I was having a wonderful day. I had been getting around better. THe exercises that they told me to do were easy and even the rain wasn’t bothering me. I was able to figure some things out, with the help of my doctor, and then suddenly, this evening, after picking up the hubby, the kneecap subluxed again. The pain began anew and I’m doing the best I can. So far, the medicine is keeping the pain and anxiety that comes along with the pain undercontrol. I would have given today a 9 but with this new sublux its all the way down to a 3. I’m off to read on the couch. Love you. Smooches.

February 26, 2007 Posted by | ankylosing spondylitis, anxiety, kneecap, pain, patella, Rain, subluxation, Windy, Winter | Leave a comment

Leavin levon far behind..

take our balloon,

Nights like tonight are tough ones. I go all night long, and then realize as I get home from the evening that my kneecap just subluxed again. What that means is that it has popped out of it’s track. This is not a new kind of injury for me. I had this exact same injury in 1998. I’ve been struggling with the fact that it’s happening again.

February 23, 2007 Posted by | ankylosing spondylitis | Leave a comment