Esther Tela Free speaks

You woke me up

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.

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October 10, 2017 Posted by | abuse, anxiety, Changes, Dreams, Internship, Memories, MOF, mom, pain, phish, reality, RMP, sickness | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Out the other side

Well I’ve made it through some sort of test. I should say tests as this is a never ending set of tests that if I fail, something pretty damn ugly might happen. I’m starting to realize that I may never be with you. Ever. And I have to accept this as fact. I’m so in love with you it’s silly. I miss you so much. It hurts. It hurts. It hurts. So badly. I still have David. My mom tried to tell me I didn’t have any friends. I feel like I have you. I have your friends. I have Grant et all at the Unity Center. I have folktime. They taught me, and are teaching me to handle the anxiety that I know isn’t my fault. It’s your fault Mom. It’s all your fault. You didn’t teach me how to live this life. You didn’t do anything except make me dependent on other people which is not how you make it through this life. I have to depend on myself; first and foremost.

I want to go on tour. I want to leave yesterday. I’m so ready to let it all go and just take a plunge into a new life. And say goodbye to this one. I’m sure I’ve screwed up in some way, I’m the queen of screwing up but what I’m starting to realize is that even if I screw up, things will go on and I will get another chance to set the path towards the right way.

I’m starting to get sleepy. I’m not sure if I should go nap. I’m not sure what to do. I need guidance. I need help.

The new album is incredible LD. It makes me feel so much and that’s what music is supposed to do. That’s what you do.

October 9, 2017 Posted by | anxiety, Changes, mom, music, reality | Leave a comment

You be my Wendy, Ill be your Peter Pan

yup,
the Magic, and that’s magic with a capital ‘m’, is back.

With concrete evidence too that other people can visually see.

I’m not crazy.

I don’t know the outcome or what will happen in the next 5 minutes. I was a bit nervous to even leave the house after the panic attack i had last night which turned into a crazy morning turning into a mellow afternoon/evening. I look forward to relaxing and puffing when i get home and maybe connecting with my A.B.

I really need to take the advice of ER and just…and just..accept things. It’s hard though. I am one who wants answers and wants to know the ins and outs of everything. How did that get there? Why did you do that? Why is it turning out this way? What’s going to happen in the next 5 minutes? What’s going to happen if this all turns out wrong? All questions that run through my head while I’m experiencing this continuing shift into my new life.

Turned in the PP paperwork and saw you. I. Want. To. Hug. You. Even just an E.T. phone home finger touch would throw me over the moon. In fact, if you are reading this, that’s how I want us to touch for the first time. Yup. That’s how weird I am. 😉

i want to go now.
i want it now
I need it
(Everything now!) I want it
(Everything now!) I can’t live without
(Everything now!)

So many wonderful plans coming up that I’m excited even if something gets in the way of those plans. I’m excited about life and what it holds for me in the future. I’m very happy with the direction my life is going in even though I’ve hit a road block on what to do next with T.S.C. I thought TL would let me post and that was going to be my saving grace but that isn’t happening. I guess I’ll just keep putting up eye candy and maybe ask…oooh. I just got a lightbulb on what to do next!

I’m ready for you. I think?

September 20, 2017 Posted by | anxiety, Changes, reality, Stream of Consciousness, Uncategorized | , , , , , | Leave a comment

TSC

Taking a chance and trying to create my dream job.

Universe, I could really use your help on this one. I can do this. I know I can. My brain dreamed it up and I would love to make it a reality. I have so many ideas that never come to fruition but this one feels pretty big.

Send luck and positivity!

August 24, 2017 Posted by | Dreams, positivity, reality | , , | Leave a comment

Man it hurts

I’ll go into it more, but today has been the most painful day I’ve experienced since my father committed suicide. I cried for 20 minutes straight in the car. I know I’m not alone. I know there are a crapoload of you out there that care and are rooting for me to get through this. That doesn’t take away the pain though. I just keep reminding myself that this is temporary and with the bad, comes the good. I am really lookin forward to the good parts.

April 7, 2017 Posted by | anxiety, Memories, reality | 1 Comment

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….

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

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.

March 17, 2017 Posted by | anxiety, Memories, Misdiagnosis, MOF, music, reality | | 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

Dreams , beams, automobiles

I really wish that the holes in my memory would start giving it up. While talking to the hubby yesterday I wanted so badly to tell him a story that involved me and someone else and something that happened years ago but I could only remember an outline of the stuff and I told it as best I could. Didn’t sound as great as I  had hoped and I wish there was some sort of pill to take to help you get your memory back.

A religious ambassador. I don’t know why we don’t have them. I mean what a grand way to help ease the wars in the world right now. Every religion would have someone that speaks for them, and perhaps we could acheive peace in this world but at the same time, I don’t even know if that’s possible.

I’m at work right now, passing time while the boss is on a (ring) conference call. Sometimes I wonder if the redhead thinks about the fans as much as a lot of us think of him. I know my husband and I have both had dreams with him in them, and it makes me wonder, on those same nights, is the redhead having dreams about his fans? Now I’m not saying he’s necessarily in our dreams but I wonder if he himself dreams about being onstage. The story he told, bout the dream that he had involving the apple and the one tooth never really struck me as a real dream, but if it was, man he has fucked up dreams.

One lasting thing from my ‘episode’ of the month of Feb, is the high beams thing. I still to this day am wondering why ‘it’ told me to keep my high beams on. I still want to know who ‘it’ was, and why I knew where to go and what was guiding me. I was never scared and I hated it that I scared the hubby. I wish he could have felt what was in my heart that night. I felt elated. I felt light as a feather. I felt like I could do anything, save someone’s life, something really dramatic. I felt that I could save the world that night if I needed too. Sometimes I wonder if all I really want is to just be loved for the rest of my life and if that’s the case then I’m all set. The hubby is the one, there has never been any doubt, and he loves me perfectly. I have no complaints (except maybe how he never wipes up his crumbs while making toast) but those aren’t real complaints. The best part about my life right now is that I’m ‘livin large’ as me and the hubby have been saying and even though we are still living somewhat check to check, we do not lack anything including love and that makes us lucky in today’s world. I am thankful to you redhead for the music that you gave to us. It also helped to shape our relationship, and I am thankful most of all to you hubby, even though you aren’t going to read this, I am very thankful that you fell in love with me as hard as I fell in love with you. I will love you forever. Promise Promise.

March 27, 2007 Posted by | hubby, karma, love, mt hood, phish, positivity, reality, Trey | 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