Amber's Abode

This has been wanting to be written for days, because it's been stewing in my brain and heart but I'm not sure what will come out. I've been thinking a lot about trying to find balance between extremes.

The biggest example I can think of right now is trying to find a balance between being hopeful that things will turn out exactly like I want them to be, and being realistic minded, like this is just the way things are for now and I just have to keep my head down and power through and know that things aren't going to get incredibly better so that I don't get my hopes up.

Practically speaking, what I mean is this.

I came here to Arizona out of necessity because I knew I would die if I didn't. But I also came because I wanted a better life, not just to survive. So it was a combination of both.

I really don't know how to explain why I'm having trouble finding the balance in words that might make sense to other people, but I will try.

When I was young, I was Pollyanna, pure and simple. The world was great, Jesus loves me, and I knew I was going to be something great when I grew up. I knew I was going to surpass everyone's expectations. Nothing could get me down. And I would always try to cheer others up. I had a Bible verse that I could pull out of my butt for any occasion.

Then, life happened. Or, just one day, I woke up to the fact that life was happening to me. Some bad things, not all just sunshine and daisies. Some things I couldn't just explain away by saying it was God's will. From the time I realized that until the time I got on the plane to come here, I lived pretty much the exact opposite of Pollyanna, very cynical and avoiding church, etc. Discovering that there were different groups of people who were just as valid. Discovering my place among people I would have avoided before, and other ways of thinking besides just Jesus loves me. I'm not trying to offend any Christians out there, I still identify as Christian at the core, just way more open-minded than I was raised to be. And so I just kind of adopted a darker this is the way it is put my head down and power through type of attitude.

Then came the love, true and complete and real love, of Daniel. Not just I love you when it's convenient or I love you even when I'm not supposed to. This new love started to teach me that I was worth more than everything I was going through in Portland; because I had been resigned to the fact that what I knew was all there was. But when I started to know I was worth more, I began to feel like fighting for myself again, began to feel what you would call hope.

And that hope made my belief in myself stronger, belief that I could change what was happening to me; belief that I had to. So I got on that plane for me. To save my life. Being near Daniel and other people who care is just the icing on the cake, although it's very good icing.

But then came real life again. Hospital visits, way less than stellar living conditions. So now, out of necessity, I'm back to mostly the opposite of Pollyanna, just putting my head down and powering through.

But people around me are starting to get the impression that I'm totally giving up on trying to make things better for myself here because I'm just so focused on getting through the moment. I even utter why bother or why did I bother type of statements sometimes, simply because it's frustrating that I'm still going through many of the things that I did in Portland, even though this situation and place is supposed to be better for me. I don't mean that I'm completely giving up, but that's what it sounds like to people on the outside, I guess.

And so I apologize to the people I hurt with this at least outer attitude. Daniel specifically, because he works hard every day to be there for me and help me do what I need to do to get where I need to go.

Inside, I know I'm not completely giving up. But it just feels like going around a hamster wheel sometimes, and I'm so tired. I thought that would all disappear when I came here, and it's frustrating to learn that I was wrong.

And it feels safer right now to just acknowledge the hamster wheel and keep running around it rather than be too hopeful about escaping. Because Pollyanna is not reality.

My reality right now is that I live here, in a place where I had to sign a waiver to go out the door by myself and where they make me go to bed at 8:00 PM. So it seems counterproductive to be hopeful about the day, which is supposedly very soon, when I will be free of this place and into a better one. After all, Jesus is coming back too. Reportedly very soon.

 But I need to find some hope about both of these events, because although they don't change my life now, they will make my life completely better when they do happen.

 So my quandary for now is how to find the balance between the two states of being; completely dark and focused on survival and seemingly without hope for anything better in the future because it's better to be realistic; or waiting for Mr. Pennington to show up in his white bus with the design crew and sweep me off on a weeks vacation, after which he will show me the completely accessible, custom designed for me, multimillion dollar house he has built for me, mortgage free, of course.

 Does anybody else, especially my disabled readers, deal with this type of struggle? How do or did you get through it? Because I know I will get through it, and I do still believe there is brighter light at the other end of this tunnel, and I believe I will get there no matter what.

 It's just dealing with my head and heart in the meantime that is proving really difficult.

This is one of those times when I feel like writing, but I'm not sure what will come out.

I mean, what does one say when her sister removes her from her Facebook friend list? Yeah, really. Just when you think your screwed up family can't get any more screwed up. And I know it wasn't an accident because the aunt that lives here was removed as well. How did I find this out? Well, yesterday was her birthday, and I went to go post an appropriate message on her profile and couldn't. She re-added me only after I left her a phone message pretending ignorance and telling her that it must be the fault of Facebook. But she never re-added her aunt. Our aunt. And her $30 a month "allowance" has stopped coming as well.

I mean, I knew she was angry that I left, but I don't understand why she has to take everything so personally. Even though the whole family is screwed up, my coming here had absolutely nothing to do with them, and yet they're all whining like a bunch of female dogs in heat. My dad said horrible things to me on a speaker phone with someone else in the room which amounted to the fact that since I left he was never going to see me again and I obviously didn't love him anymore. And now, because his parents, my grandparents, are coming to visit me in a couple weeks, he suddenly figures out how to buy a plane ticket and is excited about it? Whatever.

If he indeed shows up, he's in for the shock of his life. I don't need him anymore. Not like they want me to. It would be great if all of them actually showed up like a family is supposed to do, that is emotionally. Like my aunt and uncle that live here have. But with the exception of a brother-in-law, and my other sister, his wife, who is trying to learn to do it for his sake, none of them ever have, the ones from Oregon. So I'm used to it, even though it hurts.

But the way they have come to expect from me to need them, that is to survive, I don't need them anymore. I haven't really for years, but they are just now waking up to the memo. I guess me getting on a plane, even though it had nothing to do with them, was a pretty big eye-opener in that direction. But I had to, to survive literally, because not one of them was doing anything to help me. And I'm glad I did.

Because in the good news category, I finally got the better insurance. So this means I can move up in the world. Soon. I'm beginning to feel excited for the adventure again, not just stuck in a holding pattern. And I'm planning to sign up for a power wheelchair soccer team and apply for a service dog, so there are good things happening.

But because of the combination of good things and weird things, my spirit feels pretty confused lately. I wake up not even knowing that I fell asleep sometimes, or where I am, which is scary. I feel like I'm back in Portland unable to go anywhere because of sickness or the rain. My muscles are extra shaky lately, especially at night. Which makes for pain, which adds to the lack of sleep. I'm not sure what is going on, but I will talk to my doctor, and I'm willing to bet that changing where I live and opening up new opportunities will help.

 I will keep everyone updated. Thanks for caring.

 In case you're wondering why I didn't do my usual New Year's update, my Dragon NaturallySpeaking bit the dust. I think it was a planned obsolescence thing. I have since upgraded out of necessity, and I'm very satisfied with the new version. However, on the Sunday after New Year's, ended up going in for one of my short stays in the hotel of Banner Desert, a.k.a. the hospital. IV antibiotics to wipe out another infection. But it was only for a couple nights, and while this is annoying, at least here in Arizona, they are taking care of the problem, rather than just giving me a pill and sending me home.

The other good news is that my interview for the Arizona long-term care coverage meant for people born with disabilities is a week from today. Once I get on to that, I can move out of this holding pattern house, and real life can begin! I'm excited, because I'm so ready to explore my new life.

As for 2009, the only really good thing that I can remember happening during it was Daniel's visits and then me working on moving here, and then actually doing it. I still can't believe I did it sometimes. I had to be crazy. But it was quite obviously the right thing to do. The moral there? If your spirit is screaming at you that you need to do something, do it, no matter what anyone else says. That still small voice is there for a reason, and it could very well save your life. I believe it did save mine. Literally.

Oh, I remembered one other good thing. In June, I got to see my first Broadway play. Rent. That was fun. And I won some poker tournaments. I miss poker, and I miss many of the Portland people, but I need to keep moving forward, which is hard to remind myself during the many forced hours in bed here. But I'm doing the best job that I can.

And I'm very thankful for Daniel. Very. You are right, kind sir. No one can ever anymore accuse you of not keeping your promises. I wouldn't be here, at least not as successfully, happy, and healthy as I am, without you, and I know this everyday. I love you very much, and I hope you know that everyday.

Adios, 2009!

I'm so excited for 2010 because this'll be the first year in my life when almost everything I do is done from my choices alone. That is huge for me. So I say bring it on! There is nothing coming that I can't handle, either by myself, or with some help from dear ones. I know this because I got on a plane by myself. Whenever I doubt myself or my abilities, all I have to do is remember that day, and know that I finally did something no one else thought I could do. By myself and for myself.

I can't wait to see what will be written in these pages/screens by the end of this year. Hopefully, you will read along with me about the journey.

May 2010 be a blessed year for all of you.

Well, now that I'm finally back online, time to update my blog for myself! :-) I was going to try to write a few blogs and backdate them, but I decided I don't want to do that anymore.  One blog to get you updated will be better and easier to read:

On October 26, I did the most crazy, wonderful, and scary thing I've ever done in my life.  I got on a plane by myself.  One-way ticket so that I couldn't look back even if I wanted to.  Which I didn't.  In the cab on the way to the airport, we were literally hydroplaning.  Torrential rains.  When I got to Sky Harbor, it was in the upper 70s, and some people still wore a coat.  I still remember laughing at that.  The plane ride was awesome.  It was late to the Portland airport, but my friend Gene met me there to keep me company while we waited, and I met a lady named Audrey who liked crossword puzzles.  Which kept my brain occupied and away from being nervous at what I was about to.  But the people that put me on the plane by transferring me let me sit in a window seat, so I got to see above the clouds, and when we got above my new home, it was dark and very beautiful because of the lights.  We were up so high at first that the whole city looked like a lighted circuit board.  I will never forget that day.

Landing and getting to see and hug Daniel for the first time in two months, and doing the same with my friend Christina for the first time in around two years was awesome as well.  But that was the last awesome moment for a while.  Because both of my friends noticed that I wasn't looking or feeling very well, so we went straight from the airport to a hospital called banner desert.  Hence the short blog from Daniel about how much he hates hospitals.  We did leave there eventually, in case his blog is still leaving you hanging.  :-).  But he hasn't had much time to write in it, because he's been with me pretty much every day since.  It's both romantic and necessary at the same time.  But I'm getting ahead of myself.

They admitted me to the hospital for 14 days because I had the flu, after a flu shot before you ask, and not the swine flu, two bladder infections, which I didn't even know was possible; and really bad bronchitis.  All at once.  And everybody in Portland kept telling me this was normal I was fine and giving me another pill.  In short, I was really sick.  And it really sucked.  But at least in Arizona, they were actually doing something about it.  And I have been relatively healthy ever since.  But I keep getting ahead of myself.

My least favorite part about being in the hospital was being in the hospital, instead of out in the sun exploring my new home.  I also hated the breathing treatments every four hours day and night.  Especially the night ones because it was so hard to sleep at night.  I would just get to sleep when they would come back with their stupid mask.  One of my unreasonable fears is things covering my face, so that was torture.  Eventually they figured out that they could use a different attachment and blow the fog past my face for me to breathe in, and that was better.  The nurses hardly ever listened to anything I said, let alone the doctors.  But it helped to have Daniel there most of the day every day.  They listened to him.

My favorite funny moment was when a nurse panicked because I was bleeding.  I reassured her that it happened about once a month to most women my age.  She looked straight at me and said, "oh, I didn't know people with disabilities had menstrual cycles!" I'm not kidding.  At which point I was a little evil and asked her if I could use one of the outlets above my head to plug in a vibrator.  She left the room really quickly without anything more.  I never saw her again.  I didn't really want to, so it worked out.

 After the hospital, after they realized no way in hell or anywhere else were they getting me back on a plane to Portland, they transferred me to what I would call an adult foster home.  I'm now in my second one of those because the first one lasted two weeks because the family that ran it realized that I was way too aware for their crowd.  They were all dying, and one lady repeatedly asked who everyone else was every time they reentered her field of vision.  So they kept suggesting that I go to another place, and the day before Thanksgiving, it became an order.

 So here I am in Scottsdale, a long way away from Daniel's door even one way, but he still comes to see me every day, mostly because English is not the caregivers' first language, and we need to make sure they are actually doing their job.  But they are nice here, I have a bigger room with room for my computer, they set up Internet for me, totally crappy speed notwithstanding, and most of the time the food is pretty good.  The only thing I do not like at all is the forced bedtime between seven and 8 p.m..  But I am learning a lot about the Philippines, the culture, and a little of the language and food, which gives the caregivers no end of entertainment.

But it is hard because I have a roommate, there is no real wheelchair accessible shower, and no locks on the doors.  So Daniel and I, by excruciatingly annoying necessity, have turned into shopping and appointment buddies only, pretty much.  It's really difficult when you're around the one you love every day, but are not free to show it as fully as you would like to.

Eventually, soon I hope, I will move to a better place more suited for me in Tempe, which is where the college is and where the public transportation all converges.  I've gotten set up with most of my doctors and specialists.  The only exceptions are an eye doctor, because when I went to my referred appointment, they couldn't help me because the equipment is not wheelchair accessible, and I can't transfer into an office chair, where all the equipment is attached; also the urologist, who looked like he was barely out of high school, didn't even examine me at all, and then lied to my face three times that he did examine me.

But the best part is that I am getting a physical therapy! Yesterday, I sat on the edge of a high mat with no support helping me with balance without starting to fall for five minutes, according to the therapist! I was amazed.  The time before that, it was 3 1/2 minutes so I'm getting stronger.  I'm healthier in most ways as well.  And I can go outside every day, and go into the sun almost every day.

I am happy, and even my family seems to have come around a little.  At first it was pretty bad because they were all angry at me for leaving without asking for their permission or advice.  They even started a comment war on Facebook.  I'm not kidding.  It was like high school meets Jerry Springer all over again.  My father would cry and leave you don't love me anymore messages on my voicemail.

But somebody must have talked him around, because suddenly he is so happy for me and Daniel is the best thing since sliced bread.  Which he is, but not previously to my father..  It's so weird.  I'm not even sure if I prefer the real anger or the fake sunshine up the butt routine.  For now, I will take sunny ass, because it's much easier to deal with.

Merry Christmas to everyone! It's going to be a good one for me, quite a contrast to being snowed in last year.  Daniel and I are both going to my uncle and his family's house for the day.  It'll be my first family Christmas in a long while, and I'm so looking forward to it.  I'm so happy they have accepted Daniel.

Thank you to everyone for all the help and love you have given so far on my journey.  Especially Daniel himself.  I love you and I would be nowhere without you, like a hiker without water.

I have to go get ready now, but for now, you all caught up.  Blessings to you all!

I have the best blessings of all this year: I am surrounded by love, true love.  And I am truly, finally, home.

Hi everyone, this isn't Amber, it's Daniel posting on her behalf.

Amber arrived in Phoenix on the evening of Oct 26.   Although she was excited, she wasn't feeling well so we went straight to the ER at Banner Desert Medical Center.   They did tests and found that she had 2 very serious infections in both her blood and urine.  Normally, her Portland doctors would just give her a pill and send her on her way but the Phoenix doctors took it more seriously and admitted her immediately.

By the next morning she had a temperature of 103 and her BP was over 180.  She started coughing hard the next day and they said it was a bad case of Bronchitis.  That wasn't enough of a welcome so that evening they added the flu to her growing list of ailments.  The hospital kept her for 14 days and she got 3 rounds of IV antibiotics every day she was there and all sorts of other meds too. She also has to be on pill antibiotics for yet another 10 days.  As you can guess, she was pretty miserable the whole time, and even more so because her floor did not have accessible showers so she got nothing but sponge baths the whole two weeks.

I've been at her side from 12 to 14 hours a day since the day she arrived and her friend Christina has come by often too.  The hospital staff seemed to love me since I was doing most of their job the whole time.  No complaints though.  On a couple evenings I was able to take her outside to see the beautiful desert sunsets.

As of the evening of the Nov 9th, she is in a temporary group home until her disability services all get transferred.  Even though I don't like the place, she is doing as she always does and is making friends with the residents and doing her best to cope with the changes.  It's very scary to leave all you know and move to the desert.   She is also bored because her Kindle broke and she's on the desolate end of the valley right now.

Yesterday and today we finally went out for a few hours and I bought her some sunglasses.

The hardest part is her clothing situation.  Her clothes are for Portland weather, not Phoenix weather.  Although they meant well, the people who packed up her clothes packed up the wrong stuff.  Almost all of it is dark and thick, which is not good with it's 90 outside like it was today.  She only has one pair of shorts.  Our version of really cold is their version of a heat wave.  She needs new clothes.

The rest of this is from me and she did not ask me to say it:  If you can afford to send her some help (cash) via PayPal, now would be a good time to do it.  I've done what I can to help, like fronting the money for her rent, a hospital bed, personal care supplies, medications, a cell phone while working on all her legal paperwork, an unlimited phone card and other stuff, but now I need help with the help.  If you can help, click on her PayPal Donate link on the left side of this page and spare whatever you can.  You don't need to be a PayPal member to donate.  On the donate page, there is a iine that reads something like "Don't have a PayPal account?" and you can click there to use your credit or debit card.  Thank you!  For those who have helped out in the past, she truly appreciates it.

Just a short one to let everyone know that in a few hours, I will be on the plane headed to my new home in the Sun. To Daniel and all my friends waiting there. Curiously enough, at this moment I am not nervous.

My family now knows. Audrey and Chad came over late last night and cornered me, asking for the truth. When I gave it to them, Audrey cried a little was worried about all the bad things that can happen. The usual. But Chad said he was supportive of me, they both were, and they will help me with a phone when I get there, and they will help me to ship my stuff. So I'm actually a little relieved. It means I will be out of communication for less time than I thought.

Still, this will be my last entry for a while. Try not to worry about me. I will be fine, whatever happens. I am so looking forward to this, mostly right now because I'm tired of all the goodbyes. Bring on the hellos. Bring on the Sun. Bring on the adventure! I feel alive for the first time in many months.

Stay well and happy, everyone. I love you all!

Had a very hard but interesting experience yesterday that I'm proud of myself for. I went with a friend to Victoria's Secret, but the first time in my life. I needed to know what size I am, because I own no bras that fit me. They size for free, so in we went. Immediately, I started getting "what the hell are you doing in our store" types of looks from all the workers there, who fancy themselves models. I wanted to turn and run, but I stayed. Even after the worker who didn't want to touch me and made my friend hold the measuring tape so she wouldn't have to announced my size loudly and then added that she wasn't sure they had anything in that size. They did, but they must have had to really search for it, because she helped everyone before us.

Meanwhile, she was complementing my friend on how beautiful she looked. Everyone was. Eventually, my normally quiet friend got so frustrated for me that she insisted the supermodel measure her too, which she did, starting to gush about how she was sure they had lots of pretty styles in her size. But supermodel shut up pretty quickly when she discovered that my friend and I are almost exactly the same size! She backed out quickly and I felt better.

The hardest part for me was sitting topless in front of full-length mirror for about a half hour. I don't do mirrors, so this was very uncomfortable for me, but once again, I stayed. Got me thinking in a very in-your-face way how so much of my body image, and probably everyone's, but especially persons with disabilities, are affected, for good or bad, by the voices other people put in their heads. But imagining someone there complimenting me, I was able to eventually break free and feel pretty, which was a pretty amazing feeling. But I won't go back there. I don't want to know Victoria's secret that badly.

Afterwards, we rewarded ourselves for the grueling experience by going to the build a bear workshop. I made a monkey named Merlin, and my friend made a dog named Dale. We had a gift card, so it was free. The day before that, I went with another friend to see the movie Where the Wild Things Are. I recommend that movie especially for anyone who remembers the book or who had an imaginative childhood. The dialogue is a little sparse, but that's okay because the cinematography is awesome.

I'm struggling with the amount of goodbyes I have gone through and have yet to go through. I have one more week as of today. Tonight is the last poker game, tomorrow the last karaoke night. After that, I'm keeping my nights free, mostly because I need to try to change my sleeping schedule a little bit. I'm avoiding feeling overwhelmed by just focusing on one day at a time.