Amber's Abode

Hi there. The good news is that I'm alive, and I just wanted to write here to prove it.

What has happened is that I got pretty sick in like the middle of May, hospital and everything, and just now I'm beginning to feel like my normal self. There was a lot of necessary staying in bed and then a lot of necessary staying in the house. I can tell you a lot of things about the experience, which I was planning to do in the middle of the experience but had no energy, but at this point it would be a lot better for everybody if I skip the details and just say that it sucked royal dick, and just move on.

I am a lot better, almost perfect now. But I am still dealing with a little weakness and some nausea from an antidepressant I was trying, but I tried to take it with food now, and that really helps. Although I'm still going to ask my doctor in a couple of days if she can take me off of it. Because although they say they see no more side effects, I feel them. Constant motion of the muscles and little body tics that kind of look like a meth addict looking for a fix.

But I do have some really good news. My caregivers were looking for a house which cost them less money in rent, because they are being completely fleeced by landlords of this house.. So they found one nearby that is bigger and better, especially for me. I got to go to it and go through it today.

The Max (our name for the commuter train that connects the suburbs to Portland proper) is straight down a long sidewalk, which is really good and not bumpy. Plus, it's on the end of a dead end street. So that means there are no crazy gang members racing up and down the street. Much safer for me, especially at night. And my room is much much bigger, which makes me more excited, and it has a roll in shower, which will really help me out.

If I have to stay on this side of town for a while, I'm really glad it will be in that house. Unfortunately, we have to wait three weeks. I will probably even have room enough in my room for a surface like a drum kit or what ever you call the physical thing with the sliders, which will be good for me, probably able to actually DJ without having to worry about a mouse and dragging. What else am I going to use the economic stimulus check for? :-)

I was really sad that because of continuing weakness, I had to miss Pride last weekend, because I have been going for three years running, but now I'm happy because it's the first day of summer and solstice and sunny. And to keep me hydrated and hopefully infection free, I am being watched to make sure that I drink a lot of water during the day. Or other water like liquid. At first being watched and kind of forced to drink at least 16 ounces at one time was really really annoying. But after the first couple days, when I stop feeling waterlogged, it's going better because I actually get thirsty when I'm supposed to, so it's easier. I guess old habits die hard. I trained myself when I was little not to drink very much to avoid having to go to the bathroom so often because it wasn't fun dealing with frustrated parents especially in the middle of the night. I didn't realize that that is why I carried it with me, but now that I know, it's easier to do overcome.

Anyway, now you're all caught up. Hopefully it won't be so long between postings next time. But if it is, try not to worry. I'm just going through things to write about later. I didn't know so many people cared. People are calling me on the phone and e-mailing me asking why I haven't blogged. I want to be nice to everybody, but the real truth is I blog because I want to, because I need to get something out what other people can hear my voice so to speak, not just for my readers, although I love my readers. I blog mostly for me, so try not to get angry at me or to overly frustrated if you don't see my words for a while. It just means I'm collecting things to write about later. :-).

Well, on Thursday, I will be 31. It turns out this is going to be a pretty fun few days leading up to it. The actual day will probably be pretty quiet, but that's probably okay.

On the 21st of April was Max's 31st birthday as well, so I went over to his house. I gave him a DVD, which turned out perfect because his family chipped in for a portable DVD player. They gave me money, which I used to replace the iPod headphones which had been broken. We always do a joint birthday celebration, being only eight days apart.

The day before yesterday my dad and stepmom called to tell me they were on their way. I really have trouble with their lack of respect for my schedule, but I couldn't do much when they were already on the road.

Parental visit yesterday was not bad, just empty. And this afternoon, they want to take me to Olive Garden, and that will be it until around Christmas. Sigh. My dad has to have a task to do so he cleaned my chair, which needed it. But he actually called that quality time. I was both amused and sad.

Then, I get to start the real fun. Karaoke tomorrow night, and hanging out with Sharia on Wednesday if she shows up and maybe the younger one of my caregivers on my actual birthday, but I'm not sure.

Now, for the good news. I am now the proud owner of a cobalt blue Nintendo DS! Thank you so much, Jess and Marc! I have two games for it so far. Pokémon Pearl, (you laugh and I will hear you and kick your ass. Grin) and final fantasy something about wings. I'm so excited, because this latter can be controlled completely with the touchscreen and my finger! I don't even need the stylus. Apparently there are quite a handful of other games like this. Like Zelda! I don't have that one yet, but it will be my next acquisition. I'm so excited, because I so love the Zelda games. Seriously, thank you so much you guys. I really don't deserve friends like you.

Now, I'm going to call the parents and see if they remember they were taking me out. Sigh. More report later.

My friend and neighbor, Francis Witherspoon, died this morning at 4 a.m.. She was 92 1/2 years old. She had been in this house since the day after it opened.

As far as depth of conversation goes, I didn't know her very well because the dementia was pretty far gone by the time I met her. But she always had something nice to say to me every day, usually about my outfit. She was a true Southern Belle. When she could she spent warm days out on the back porch with her sweet tea. I never ever saw her wear anything other than a dress, and her makeup always had to be done, even at the end, even if it was just blush. She missed Southern cooking, like I do, so sometimes when she didn't want to eat, I would tell her to pretend it was collard greens and okra. At which she would enthusiastically try a bit and then inform me that I was sadly mistaken.

She was the sweetest lady, but Lord help you if you crossed her enough to get her temper up. Some of the other residents would pick at her sometimes because she had dementia and they didn't think she knew what they were saying. One day she finally had enough at the dinner table and called the lady that was teasing her a shameless hussy and told her to go away and leave her alone. It was funny but also inspiring that she had enough inner strength to stand up for herself even at that late date.

Goodbye, Francis. I just went in your room to see you before they take you on a last trip home to Texas. You look beautiful with your painted nails and pretty gown, but more importantly, you are at peace now and not in pain and probably with your husband and other family. Your family that was here talking to me is sad because they will miss you but they are happy for you as well, and they seem strong. They will be okay. Your granddaughter, Kendra, promises to come back and visit sometime and then the little family here will have a gathering in your honor.

I already miss you. The hole that you left in this house will stay huge for a long time. But don't worry about us. Live on in never-ending peace and joy, with all the fried okra and collard greens and hush puppies you could ever hope to eat.

I love you.

Well, I know I haven't written here in awhile. Collecting things to write about I guess.

I went to see my friend Max one day last week. He was glad to see me, but still in a lot of pain. I wish I could help him more, but I guess just my being there is gift enough. I think I will go again this coming Wednesday or Thursday if it is a good day for him.

This little time seems also to have been about getting lost for me. I was supposed to go meet a friend downtown at a pizza place and was wandering downtown to every pizza place in that little chain, until by the time I found the right one, he had to leave. How embarrassing.

Then yesterday, I was invited to my nearby sister and brother-in-law's house to test out the new ramp they made for me to get in. The bus driver dropped me off at the wrong stop, and I got lost. I called them from a hospital which turned out to be really close to their house, but I didn't know that. They tease me about it for the rest of the night. And when they gave themselves some beer, I got water. There were lots of little condescending things like that, but they are stressed because they found out that he is to be deployed toward Iraq on August 1, not January 1. So I tried to give them the benefit of the doubt.

Then the bus driver on the way home remembered me from when I lived here before and told me he hadn't seen my boyfriend lately. This is happening more and more since I moved back, and it's a little more awkward because the person and I are actually on speaking/friendly terms again. So I always have to explain he's married to someone else now, and they always look so surprised. This particular one wanted to know what happened, so after thinking for a minute I told him that I think that the basic start of the downfall was that we saw each other so much, as in constantly, that we started take each other for granted, like we didn't really see each other anymore. The driver said that makes sense and it happens to a lot of people, so don't beat yourself up too badly. That was a little comforting, because it does bother me how much we hurt each other, especially since we are making an attempt at being friends again. But I am glad to have a new friend/an old friend back. It's a little bit of both, because we know we are different and can't really go back to the way we were before even if we wanted to. But I wouldn't trade it, though most other people around me don't understand it.

I also have been using the good weather to try and get a job, paying or volunteer. No success yet, but I will let you know.  The fluctuating weather also seems to bear direct impact on my mood.  I seem to get frustrated easier these days, and happy less often than usual, but when I am happy, the wait is worth it.  I guess it's just like welcome to being an adult finally or something.

That's pretty much it for now.

Well, I know it's been forever since I wrote in here last. There are multiple reasons for that. One being that I caught a cold and last my voice for a while. This makes typing with Dragon NaturallySpeaking nearly impossible, as you can imagine. The other is a mental health thing that I don't think I will write about in great detail here, but I will mention some nebulous concepts.

The good news on the physical health front is that I finally got a home health organization to come out and do their job and change the catheter. So I think that problem will likely be solved soon, at least the infection part. I also now have regular communication with my primary doctor and urologist, both of which are good things. Also they discovered that I might be nauseated all the time due to acid reflux disease, common in people with cerebral palsy, so they started me on Prilosec today. This is not such a good thing, but at least this might help to alleviate a really annoying symptom. We shall see.

More good news. I discovered that I am physically able to DJ! Using software, of course, but still. I'm so happy about this, it's insane. I've always wanted to be able to share my music with other people. Most likely in the beginning I will just have to stream in a virtual setting like second life, but at least I will be able to communicate musically with people.

Now, on to the mental health nebulous concept. It's really weird when you think you are growing up or at least changing, only to find out in a few years later that in some ways, you have stood perfectly still for the entire time. Just one second or one connection happens, and the rest of everything just falls away. That's happened to me in different ways a few times before, but not in this particular way, with someone I loved, and then abruptly found out that I still do, at least care. People always miss connection from the past, especially if they didn't get to say a proper goodbye, proper as in satisfactory to their own soul. And no one forgets their first. Those are the main voices in my head lately, and I acknowledge them, but I'm respectfully learning that this is different. I don't really know to explain how that is, so I'm not going to try here right now. But the tricky thing is that the other person still feels connected to me as well.

Why is this such a cause for confusion and not joy? Well, because now the other person has a spouse, whom I know and have no wish to hurt. Most people I know would tell me that there is the end of it right there. That I know what's right and should just walk away, because God says that's the right thing to do. Well, if those same people say that it's easy to do that, they are lying through their teeth.

I know I will do what's right in that regard. It's the mental connection in my own hurting over it that makes life a little difficult for me right now. I keep wishing that I could go back and change our whole journey so that nobody would get hurt. I keep wanting to apologize to the other person for the hurt I caused, even though I know that it wasn't one-sided. I got hurt too. But I'm discovering about myself that I never really give up on any of my connections. I just have to figure out how to change it so that it works within what the reality is now. But again, that's not easy.

It feels like no one can help me with any of this, except for the other person, who can no longer give me the one thing I really need right now, a physical connection to fold into and just hide for a minute, a return to my first emotional home, the first I was ever given.. There are other people who try, but right now and for now, it's not the same. Not that I will ever give up those connections completely either, but they don't fill a need for me at this moment, in this particular headspace.

I'm pretty sure I will come out on the other side of this somehow and laugh about how I thought it was so hard, but for right now it feels like most of the struggles of puberty have hit me all at once. I've always known I'm a little behind the times because of how completely I was sheltered when younger, but this one completely takes the cake...

I guess that wasn't so nebulous after all, but there you go. Anyone can comment to say hello or offer advice, but I wouldn't put too much emotional energy into the advice part, because I doubt I will be able to follow it, at least not right away. Whatever it is, this is something I have to go through on my own. And I'm proud of myself because this is the first time I've ever been able to honestly say or notice that fact. Always before someone or something has been rescuing me or helping me to get through the hard spots.

Still, there are always the nagging questions like what if there is only truly one soulmate or someone for everyone in the world, and I/we went and screwed it up? Am I going to have to spend the rest of my life caring for someone who is unable to care back completely, or will I finally be able to let go and move on because I choose to, not because of other people's fear? Am I ever going to be able to open myself up to someone else enough that they will be able to give me the home I long for? Do I even want to? And on and on go the tortuous circles in my head.

Yay for growing up. And

I hate growing up. Sigh.

Well, I really don't recommend a hospital stay as a vacation. That's where I was for the last week while they tried to get to the bottom of this infection and extreme side effects thing. They finally set me free from all of the antibiotics, and apparently the bladder infection is gone, but I'm still more than slightly nauseated today, so I'm not sure exactly what is wrong.

There wasn't much good to report inside the hospital. Just a lot of sleeping and stupid daytime TV that I don't usually watch. But I got to connect with a couple of really good nurses, one of which has a one-year-old son with the same variety of cerebral palsy as me. So she was excited to meet me and see that I was so with it and together. Little does she know. She asked for advice. All I could think to say was let him be who he is and try not to make him any more or less than whenever that will be. We were going to stay connected, but she hasn't contacted me at this point yet.

We're going to try to start with a new home health organization. And the one that neglected me has been reported to adult protective services. So hopefully things will change. Naturally I'm skeptical.

But for now it feels good to be in street clothes for the first time this month and to be able to go out of the house. I'm not sure what to do first, but I know what I'm doing tomorrow.

Yes! Amber gets a big kid drink and hugs from seemingly long-lost friends in her favorite "living room!" How wonderful it is to actually feel 30 again.

The day after I wrote last, they put me in the hospital for a couple of hours to insert what is called a pic line. That's pretty much an internal IV. The whole process was something out of a science fiction horror movie. They had to tie my arm down so it would stay still. And it really hurt, because for some reason, they did not use any pain medicine. And there was the usual talking down to. But I made it through, even though they didn't seem to believe me that I needed something like Imodium for a usual serious side effect that occurs whenever I am on hard-core antibiotics. Oh no, that's mild, sweetie, they said.

The next day, they hooked me up at home to a portable IV pump and a medicine called Zosen flowing every six hours for a week due to a raging bladder infection I probably brought with me even all the way from the nursing home. I could sit up in my wheelchair when I felt able to do so, but for the safety of myself and those around me, I wasn't allowed to leave the house. The day after that, the "mild" side effects started, with of course no medication because I can't even take over-the-counter stuff here unless I'm cleared by a doctor and my doctor was out of town still on a family emergency. I stayed in bed a lot, and avoided writing here because there was not much good to report.

Exactly a week later, a couple of days ago, they came to remove the antibiotics, but informed me that they would collect some samples for testing to see if the infection has cleared, and if not, the antibiotics will come back for another week. I was frustrated, but I figured I'd have at least a couple days to be free and out and about before I got tethered again. Because they did the test yesterday, and we will not know the results until tomorrow or the next day. But, no. Whoever is in control of all this must be laughing at me. Because the side effects did not stop after the antibiotics, and actually got even worse. We couldn't figure out why until another resident here came down with the same symptoms. Some sort of stomach bug. And it's still continuing, whether or not it's from side effects or the bug, no one can tell anymore. And, although I'm no professional, by the looks of it taken samples, I will have to go back onto the antibiotics in a couple of days. The infection appeared to clear up while I was on them, but as soon as I came off, not so clear.

So I'm really trying not to feel sorry for myself, but it's getting very hard. I haven't been out of the house or in street clothes this whole month, and barely out of my room. The side effects still continue even with medication to prevent them, finally, and without the antibiotics for now. I don't understand any of this, and I am done. It's somebody else's turn for a change. And if one more well-meaning person tries to tell me about the Bible character of Job or how this is all part of God's will, I'm not sure what will happen, but it won't be good. I forget what my friends look like, what any kind of good drink tastes like, what fresh air feels like.

If there is any good to come out of this, I guess it would be that I've had more time to escape to virtual worlds. Since I can't go out, I hit virtual clubs almost every night inside Second Life, with some pretty awesome DJs, and people that really feel like they care, and might become real life friends if I ever got the chance to meet them.

With my friend Max, I have restarted my character in a game called Toontown, a game modeled after its namesake in the old movie who framed Roger rabbit?. You have to make evil robots self-destruct by laughing too hard at these jokes you throw at them, called gags. It was originally marketed for a younger audience, but is pretty challenging for big kids too. Unfortunately, when I restarted my account, I also had to restart my character all over for some reason. She was a level 63 or something. Having to start at the beginning again is like a 16. It's not as much fun to run through the repetition of earlier levels by myself, and I haven't gotten to connect with Max's character very much due to my illness and both of us just never being at our computers at the same time. But Rainbow, my little purple monkey, will be there waiting whenever we are ready.

Lastly, for the games, I finally went and did it. I caved and bought into the renown of the phenomenon known as World of Warcraft. This is mostly because it is now cheaper and possible to legally download the whole game to your computer after buying it instead of having to use CDs. Also, one of my uncles has been dying to find a game he can play with me. And he kept telling me that if I became a hunter it would be easier because at level 10, you get a pet who can help you fight the bad guys. Also apparently, there is a little less button hitting. I was skeptical because I've never found a hugely popular game, an online one anyway, that I can play with any success at all. But I decided to try anyway.

So I'm now a hunter in a race called the blood elves in a group called the horde, which I gather are neither good or bad in the epic fight against good and evil. They are the neutral ones who are now caught up with fighting just to stay alive. And I'm proud to say that Luna, who decided to port herself over from second life :-), is now a level 5. Not bad for a disabled person playing for what amounts to be three days. Last night, I got to run with my uncle and cousin, and am now part of their family guild. It was definitely easier working with them. But they kept looting the bad guys they killed for me, when I'm the one that needed the items to complete my quests. So now I have to do two or three of them all over again. Oh well. What else have I got to do right now, right?

I'm really tired and frustrated by all this. But I'm also tired of being tired and frustrated, so it's an endless loop. I can spend my time wondering why all this is happening to me, or I can try to go online and pretend that it's not. Some days, it's one or the other. On days like today, I'm conflicted, because I feel the need to do both. I figured writing here would help me feel better about the whole thing.

It hasn't really. I have this huge struggle about how small and/or limited my life has become since I was able to move out of my parents house almost 8 years ago. I was so proud of myself. And now here I am. Just as limited, if not more so, as I was under their roof. It angers and scares me, but I guess I have to be resigned to it. Because although I want a different path, this is my path for now. This is my journey. And I am. Whether I am Amber feeling deathly sick some days, or Rainbow Preciousmonkey, or Luna Sojourner, the virtual club girl, or Lunasojourn, the fierce Blood Elf Hunter, I am.

I am. Smiles sweetly at Pony.

I exist and always will in some form.

And somehow that's comforting.

Hey, on some days, you just have to take what you can get.