Amber's Abode

this was originally written on July 20.  I need help.I still am not the person I was, and I do not like it.  Encouragement and ideas on how to shift this are desperately needed.  Please.

if you have already read my note on Facebook regarding what happened to me, skip down to the part under today's date.

sorry if this doesn't make sense, my words are not what they used to be right now.

Last Thursday, when I was walking home from Daniel's house, just before nine o'clock at night, I came to the last crosswalk. I had the walk sign, so I looked, and there was a white car, but they were not turning. So I started across. Then the white car decided to turn, very fast, and not looking.

I remember thinking a bad word because I knew he was going to hit me. I tried to back up, but my chair wasn't fast enough. He hit me on the left side while I was trying to think of everyone that I love and tell them sorry, because I thought I was going to die.

When I woke up, a lady who said she was a nurse was talking to me. I was on the ground. A bunch of people got me off the ground, but I was still in my chair, so I remembered how to tell them how to move my chair, and they got me out of the street. A police man talk to me, but I don't remember. We didn't stay very long. They said they were trying to catch the white car, because it didn't stop. I told them my boyfriend's phone number, and somebody called. I told him to meet me at the hospital.

Some people put something on me so that I could not move my head. My head was hurting really bad. They took me to my hospital that I usually go to, but they didn't have anybody there that can help my head, so we went to another hospital, and all kinds of people started looking at me all at once. It was like that TV show. I remember saying hi to the people, but I don't remember much of anything for the next couple of days. I didn't member my boyfriend's name. It is Daniel. I kept calling him the guy from Oregon or Mark.

Later he told me that those days were spent in the ICU. He said that people woke me up every hour and asked me questions. And I got all the answers right, except some were funny. I don't remember.

My dad came. They moved me to a regular room, but I shared it with different people, and it was noisy and hard to sleep. But I got in my wheelchair everyday, and went down to the food place or outside.

Now I'm back where I live for now, but I don't feel like me. Everything is hurting. I don't talk the same way and forget words. I can't go anywhere on my own because I don't drive my chair right. Nothing is the same, and I am angry and confused.

Please, if anyone wants to help me cheer up, I love cards and letters and surprises.My mailing address is available on request by private message.

there is also my little site called www.playenabled.com, which has a way to send cheer along, so that I can help other people like me be happy.

Or just put your words here. I am surrounded by love, and it is supposed to get better soon.

And I am so glad to be alive.

Amber

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it is now September 2, 2011

The anger has mostly mellowed down into an apparent automatic reflex to make negative comments about everything; even those things meant to be positive.  And I don't even notice unless it is pointed out to me.

This has made it difficult for Daniel and I.  We're still struggling through the waiting time until I get my apartment closer to him.  Life in this house is not getting much better.  And apparently, in the ICU under medication, so that I don't remember, I said some pretty awful things to him.  So we are both trying to process a lot.  I love you, Daniel.  So much.  I'm sorry for everything.  We will make it, I promise.

And I still don't go out very much, even though I'm able to now, because I'm terrified of crossing streets, and there have been several near misses already.

On the good side, a local ABC affiliate has done a story on me and what happened with the service dog.  I will post the link when I get it.  It has not aired yet.  So, hopefully, we will get some money back.

Because I have a dog now being trained by a good friend and Daniel together.  Her name is  Trixie.  I got to name her.  We were originally working for a dog that was already old enough to start working right away.  And we were definitely looking for a bigger breed of dog, but I think Trixie The Wonder Puppy will make an awesome service dog, despite her size.  She is a five-month-old rat terrier, the kind they call blue, and may top out at 10 pounds when she is done growing.  She is beautiful, and one of the smartest dogs I have ever met.  If anybody can help me despite small stature, she can and will.

My baby girl is doing amazing in her training.  Of course, at this moment, she is more attached to her trainers than to me.  That makes me a little sad sometimes, but it makes sense, because that is where she lives and eats.

But whenever I get to interact with her, which is often, she is perfectly comfortable with me after she settles down a little bit.  She loves to ride on my tray,sitting very attentively, looking all around.

now, I am off to publish a gallery of photos of Trixie and I.

okay, I know it's been forever since I've written here, but I've been really busy.

The situation here continues to  devolve from less than ideal to really, really bad; so I don't stay here during the day very much anymore; riding the bus to Daniel's neighborhood as soon as I wake up; only returning to go to bed. That is the main reason I have been neglecting this  space. I am sorry to my three loyal readers.

I have been actively working on bettering myself, and will shortly be on the waiting list of a totally wheelchair accessible apartment complex. I'm really excited about that. Please send energy towards it happening soon. I will be better about reporting results.

 have been diagnosed with chronic pain and neuropathy. Emanating from my lower back. it is a pinched nerve; which totally and completely sucks. Enter the ever present debate about medication relieving the pain but  knocking me out, or trying to live with the pain to function and feel mentally like myself. Because I have  been told t will never go away, and there's nothing anybody can do to really fix  it. Oh joy. I have become elderly at just shy of 34.

So, are you wondering what the best news ever is?

I found out my service dog boot camp begins on May 9! there will be three weeks of learning and/or jumping  through hoops made out of  freeze-dried bullshit,  but after that, I will have my service dog by my side. I am beyond excited! A lifelong dream is coming true at last. I'm really nervous, though.

All in all, despite the constancy of pain, I would say my life is looking up.

And I will try my hardest to check in here more regularly, though honestly, I prefer living life to writing about it, at least only writing about it and not living it.

I love you all.

PS, Hey,  Daniel! We need a tag that says animals up there.  And I love you most of all!

Well, I'm finally among the land of the blogging again, thanks to my upgrade to Dragon NaturallySpeaking 11 Premium! I am excited/relieved. A lot has been going on worth blogging about.

Most notably, with the help of many people, Daniel being chief among them, I have raised enough money for my service dog! I am beyond excited about this; and it could actually end up being  life-saving. Who knows? I know it will save a bunch of annoyance, regardless. So, in about a month, I will have no more situations like today, in which I had leaned over too far, and could not get myself back up, with no one around to help. 45 min. later, someone shows up. When I get my dog, I will tell it to brace, use it to push up on, and problem will be solved. Not to mention I will be able to get into and out of my front door whenever I please. I am very proud of myself for my hard work and belief. I have had this dream my entire life, and now it is coming true! There are really no words for the excitement about this because I know it will completely change my life. Much much more to come, I am sure!

I am also looking for a different place to live, and although that is nothing new, I am very soon going to be much more active about it; thanks to my friend Ray and his van. Once that happens, either school or a job of some sort will follow.

It's good sailing for Daniel and I as well, although my living situation is still pretty stress inducing. I'm out of here whenever I can be. And he's knee-deep in various programming projects, again and still, but we quite often meet in the middle. His mom is coming to see us again in a short while, and there may even be travel in the future!

On the downside, my chair is in the shop again, so I'm cruising around in whatever loaner POS they had in the back of the shop, but at least I can move. Although I don't know how I will be standing this particular vehicle for much longer, or how long I will be having to use it. It is very uncomfortable.

Also, I'm back on antibiotics for another UTI. But I guess that's not new news is it? Oh well.

Those are the Cliff notes to catch you up; more details to follow shortly now that I can type with the speed of a nondisabled person again.

I'm not sure what's going to happen but 2011 is shaping up to be a great year.

Happy new year to you all!

Well, I'm blogging again, finally. I'm not sure how long this will be or not, because I don't know what I feel like writing.

The time between the last one and this one has been such a like a roller coaster it's not even funny. I was all excited about soccer. Then, almost right after writing that, I found out that I am unable to play soccer competitively because it is impossible for my chair to go fast enough to be safe. The sport regulated speed is 6.2 mph; my chair maxes out at 5.0. This is actually a rather dangerous difference. Because anybody that hits my chair going at that speed, it's like 2000 pounds of pressure per opposing chair. And there are usually two opposing chairs. I can't afford damage to this chair because it is my only one. And I also found out that my insurance will not pay for any speed above 5.0 mph on a new chair. So there is that. Another dream dashed; one that I really have wanted all my life. They told me I could keep going to practice, but it was very much like being nice to the poor little girl attitude. And the location isn't very safe to get home from. So there isn't much point. I was really struggling with this. I still am.

October 26 marked my year anniversary of being in Arizona. I had awesome plans of things I wanted to do with Daniel to celebrate. What did we end up doing? Being in the hospital, of course. I was there last year, so I guess it only makes sense. So infuriating. I wasn't feeling well and ended up having a climbing temperature. I had gone to bed early; but when the temperature reached 103.6°, I asked them to call 911, because it was still climbing. And my normal is 97.2°. They said they had to call the manager of the house first. Meanwhile, the temperature keeps climbing, and they keep waiting for a callback. When they finally get one, they are told to call in nonemergency transport wheelchair van for me to go to the ER in because that is the policy of the company. I, really scared of what can happen to me now while they debate, repeatedly scream exactly what they can do with their company policy. They won't let me use the phone to call 911 myself. Daniel shows up, joins me in communicating what they can do with company policy, and 911 is called.

We get to what is becoming my home away from home at 11 PM. At 11 AM the next day, I am admitted to the floor. Diagnosis? Raging UTI, of course. They also do other tests, like brain scans and back MRIs, because I have a pinched nerve in my lower back, and they were worried about possible seizures, so they decided to kill two or three birds with one stone. I prefer not to think about those tests, because nobody listened to me about not covering my face, etc., which led to some pretty embarrassing moments.

Anyway, I was there for about five days, four or five, and on the last full day, Daniel's mom flew into town, and came to see me after she got settled. I was so mortified. Nothing like meeting your for all intents and purposes mother-in-law in a hospital gown looking like death warmed over. But she was great, and called me beautiful, even like that.

Luckily, the next day I was released, and the three of us spent the next five days hanging out, eating, and exploring the city. It was so much fun. For someone in her late 60s, she is very hip and spry. Today is actually her birthday, so happy birthday Mom Linda! She also likes to randomly sing like I do, mostly songs related to something else somebody said or did. We just had a whole lot of fun; although she was horrified by the degrading amount of care in my current living situation. That's another topic altogether.

Anyway, I've inherited true family. They all are on my Facebook now, and she says I'm good for her son. That makes me really really happy, just knowing that someone else sees it too.

The dog fundraising is going well. My friend Marci is having a benefit concert for me at her church on Friday night. It's in Oregon, so I can't be there in person, but I made a video greeting. I have around $4500 so far, and she seems convinced she will be able to raise the rest of the love offering collected by her concertgoers. I hope so. We shall see. I also have my own booth at a dog related fair type of event on November 20.

The weather seems to want to astound me lately. A week ago it was 100°; now it is 65°. In Portland, 65° was almost warm. Here, I'm bundled up like you wouldn't believe. It's really cold. I guess I'm really acclimatized now. But my body is not feeling well because of the drastic and speedy temperature change.

The good thing about the cooler weather is that I can go out more. I figured out the buses to Daniel's house, and I'm attempting to be there more than I am here; or at least out somewhere in general. I made a new friend at the bus stop near his house named Ray. Ray is also in a wheelchair and lives right across the street from Daniel, so I hang out with him as well. He is a computer geek with good fashion sense. He also has a wheelchair van that I got to ride in. It's pretty cool.

It helps me keep my mind off the crap that's going on around here, which is pretty much just the same as always. People quitting, open shifts, people with bad attitudes. That's all I have to say about that. For now, at least.

I'm pretty tired so I am done for now. But at least my readers are caught up. I hope everyone is well and happy.

now here's a category I never thought I would ever write in. Sports. But it's true. I'm now a bona fide athlete. In a sport known as power soccer. Or power wheelchair soccer. I'm very excited!

And even though I will have to get my top speed ramped up a little, at least one of the settings, I was really good at ballhandling at my first practice on Monday. I'm so proud of myself.

Here is a video of my team, the Arizona Heat, before I joined it.

There are other things to report but I am too tired now to write much. Just know that I'm alive and relatively well and very happy about my new adventure. Our first scrimmage (a match which is played like a real game but doesn't count on the record  officially) is October 15. Against our stronger ASU counterparts.

For now I am in what I call the lower-level reading group. Sigh. But I'm still part of the team, and I will move up quickly. It's surprising how actually physically tiring it is. But it gets rid of some of my energy.

and this is a real sport. Before I went I thought it might be a be nice to the gimps and let them push around a ball type of thing. Oh no. There is contact and everything. I am one of only two girls who regularly play, so it's a little intimidating. But I will learn and hold my own, just like I did with poker when nobody thought I knew what I was doing. :-) There is even a World Cup for the sport.

Here is the Wikipedia article about the sport:http://en.wikipedia.org/wiki/Power_Soccer

So now it really is time to kick some balls!

I'm doing an experiment here. I signed up for a program by the author named Sark called juicy journaling. For 30 days, I will be getting journaling prompts, which I will share here. I invite you to play along with me.

I will blog about regular stuff as well, but this will give everybody a nice break from the usual stress. Here goes:

Create a fast list of your favorite gorgeous moments -- such as the smell of clothes dried in the sun.  List 2 to 25 gorgeous moments in a column, as quickly as you think of them.

 Holding hands, skin on skin, the smell of honeysuckle, the sound of crickets, the smell of wood smoke, watching the stars, doing really well singing a karaoke song, real hugs, nonmedical touch, the smell in a bookstore, recognizing the first few notes of great songs, holding a baby, to be continued...

 I think that fast lists are a great way to the pen moving.  Do you like making lists?  Why or why not?  What significance do lists have in your life?

 Yes, I like making lists and reading other people's lists, but then I have a hard time following them, which I find a little strange.

 Select one item from your fast list of gorgeous moments and write about it in more detail.  What makes this moment special to you?  Why is it a gorgeous moment?

    Several of my gorgeous moments are all wrapped into one; nonmedical touch. This means touch that's not necessary for my physical care needs due to my disability. You'd be surprised how much of a lack of that there is in my life, and in the lives of a lot of people with disabilities. Holding hands, genuine hugs, they are all part of it. I'm not even talking about anything sexual, though that is treasured as well.

 Do you remember the first time that you experienced this particular gorgeous moment?  Write a story about the experience in third-person, with yourself as the primary character. (If you don't remember, or if you have never experienced this yourself, write a fictional story!)

 One summer day, Amber was walking beside the man she loves home from a restaurant. It was a sunny day, which is somewhat rare in that part of the world. She was so happy to have this man visiting her, for she loved him even then, and had for a really long time. As far as she knew at that moment, he just thought of her as a friend, but she would be patient and treasure him in any form he wanted to offer.

 Then, suddenly, but also just at the right time and not in a scary way, the man took her hand and started to walk beside her wheelchair! No one had ever done that before; they always just grabbed her joystick or another part of her chair.

 Amber just stopped and felt the weak sun on her face, and the warmth from his hand that melted her whole body and years of pain and cold. For it was then that she knew that he loved her too; that love had come around again, despite the long and cold road they had both traveled to get there. And she knew that believing was possible, that wishing and hoping were real. She knew she was strong. She knew she could do anything. She also began to realize that she just might be beautiful.

 If this particular moment were to seep into your soul, what might that look like, smell like, feel like, and BE like?

  We would be in a place living together, not always having to visit each other's homes. I would wake up beside him and go to sleep knowing that I'm safe and loved, not just by hearing it, but by feeling it, body and soul. It would smell like honeysuckle and feel like the softest warm breeze at night.

 Is this gorgeous moment something that you experience often in your current life? Why or why not?

  Not yet, because there is a severe lack of privacy here where I live now and also a lot of stress that kind of kills the impetus for any soft or close moments, big or small.

 And I don't experience much nonclinical touch from the world at large because they are afraid to hurt me or afraid they will somehow catch what I have. This makes me sad, because I'm a very positive touch oriented kind of person. I would tell people to give hugs whenever possible. You never know if it's the only one the receiver has ever gotten. And I mean real hugs. Not a shoulder squeeze. Unless I ask for it, that's kind of even more emotionally hurtful than no physical touch at all. I'm not really sure I can articulate why this is, but it's true.

 What small change could you make in your life in order to experience this moment more often, or more deeply?

 As far as the world at large, I just try to have a sense of humor about it so I don't get too hurt. Sometimes it works; sometimes it doesn't.

 As far as the one I love, he shows his love through acts of service mostly, which are very awesome, so I guess I could try initiating a little bit more of the small soft touch moments myself.

 Make a new fast list of gorgeous moments that are centered around nature and the outdoors.

  The smell of honeysuckle. And fresh cut grass. And Sun. Seeing the stars. Seeing the ocean. To be continued...

 How was the experience of creating this second list different from creating the first one?  Which list was easier for you to make - the first open-ended one, or the second, focused one?  What does that tell you about what supports you best in writing?

 Again, I'm somewhere in the middle. I was glad for more specific direction so that I could know I was doing something right, but I also felt a little restricted. The balance is kind of strange.

 Now pick one of your fast lists to be the basis of a poem.  To expand the list into a poem, make each list item the first word of a new line.  Fill in other words to complete the poem.   

 I will work on this and post it later, the gorgeous moment poetry experiment.