Amber's Abode

Wow. So much to write.

We made it to September. This is mostly a good thing. I am mostly healthy. This is very much a good thing. My happy pill dose was increased. Good thing. Spasms very much increased. Bad thing.

My counselor is going to work with me on untangling some of the past so that I can figure out why I am still being kind of held by fear and anger. This is kind of scary but I'm glad I asked her to do it, rather than just talking about whatever happens in between sessions. And she wants me to write down some things I want to say to people that I can not do right now in real life, because she says reading them out loud might help. I don't know but I'm willing to try.

My neurologist increased my anti-spasm drug to the maximum doses per day, so we will see how that helps. Not looking forward to it because it will make me more sleepy for a while, but if it helps, it's better than having a surgically placed continuous pump. I'm willing to do that if I need to, but I'm pretty done with surgery for a while.

Apparently, after a year, the antidepressant needs to be adjusted to work properly. This was also scary, but it seems to be working a lot better. I still get sad, but I'm better able to handle it now. And everyone around me notices a change. Which is important.

The staffing here right now is crazy. Because of my new roommate, who is cool, they have to have two people on most of the time during the day, including overnight. So there are a lot of open shifts. And two of them are pregnant; one of them refusing to do any lifting or anything, so the two of us that need two people if we need major help are pretty much up a creek when that person is working. It's crazy. And because of all the shifts in the air that my mentally challenged roommate can feel, he is really noisy in his stressed vocalizations. Nonstop. Thank God for music and my Bluetooth headset.

Daniel and I have tried to counteract all of this by being out of the house whenever the hot weather eases up a little bit or when there is no choice, like doctors appointments. It's been interesting to try to learn some more of the public transportation around here. It's very lacking. And I thought Portland was bad about people not moving from accessible seating areas. Arizona people are much worse, and I'm afraid to say anything because you never know who is packing heat around here. Small smile.

Daniel has also been picking at least a day of the week, usually Wednesday, to make whoever is here homemade breakfast and dinner. Last time breakfast was blueberry pancakes and dinner was fish tacos. The time before it was French toast for breakfast and stirfry chicken, peppers, and garlic for dinner. This is good for everyone, as he enjoys cooking and we all enjoy good food once in a while. A break from the quick cooking crap. He also has been helping with the grocery shopping, which is good because he actually knows how to shop on a budget. He will come home with nine bags of food versus their four, and still have some left over.

The big news is that I kicked butt at the meeting that was coming up in the last entry that I mentioned. I kept it on topic and track, despite a very thinly veiled threat to release me from my lease agreement if I file in civil court regarding the stolen laptop. When I confronted her on it she assured me that they would not release me for that, they would release me because I'm not thriving in this environment. They are not used to people like me that have brains and can stand up for themselves, and I scare the crap out of them. So I will looking for a new home come February. They can't just kick me out on the street, they have to wait until I find some place, so it won't be an emergency, but it's still weird and sad and stupid.

She even asked me what percentage I could actually physically use the laptop that was brought as a replacement. It was the only question I wasn't prepared for. Daniel says that I should have said something like the same percentage that I can use my hairbrush or wipe my own ass by myself. Does that mean my brush or behind is not mine? Because the point they were making is that the computer is actually Daniel's. But if they're going to get technical, almost everything in this room is Daniel's, having been bought by him. Because I came here with nothing. Does that mean they don't have to protect anything of my belongings? The court is going to have so much fun with this.

My dog fund raising is going well. Almost halfway to $3000. ABC told me they might be interested in the story, and now they're waffling a little bit, but I think they might come around. If you want to help, see the link on the side of this page. And share with all of your friends and family and churches. I need all the help I can get. Monday, the baseball game of the local team is service dog awareness day. So I will be there trying to rustle up some donations and learning all I can.

Somebody turned me on to the Stargate series, and I've been watching the first one on Netflix in the evenings. It's pretty good so far.

So even though I miss the freedom of motion I used to have in Portland, it seems that my days are relatively full anyhow. I can't believe it's almost been a year since I came.

There. Now you're all caught up. I will write again sooner than I did before. I hope everyone is well.

Welcome to my first blog via Bluetooth headset. I actually started this yesterday, but I forgot to save the document before I shutdown the computer last night. Sigh.

The headset is cool. I can listen to music or use Skype from anywhere in the house. It is stereo. You can use Dragon wirelessly as well. Although I tend not to type when I can't see the screen. My accuracy still sucks because there is no visible microphone, so I don't know where to aim my voice. But it is getting better. The other downside is that I cannot listen to music and use Dragon at the same time anymore. But I guess that makes sense as well.

My emotional journey, my spiritual one, has become and remains something difficult to blog about. I feel a lot of anger toward situations that I can't control or make better, like my stolen laptop, or my constant UTI, which seems to have resurfaced yet again, despite repeated and so far completely failed and ignored attempts to educate staff here on sterile care. I feel a lot of fear and also excitement for the future. I feel a lot of fatigue, mentally and physically. I feel joy and love. Lots of love. And even peace. The "problem" is that I'm not used to feeling all of those, completely, all once. All the time. My current spiritual journey, which has little to do with actual religion, seems to be about letting these things flow through me while attempting to keep them in balance. To this end, I have been listening to a lot of Buddhist chants set to beautiful music as well as things like Enya to try to clear my mind a little. And I haven't felt like talking very much. To anybody. So apologies if you feel ignored. I just don't know how to really vocalize what I'm going through. I will come out on the other side of this.

Maybe the fact that my medicating psychiatry doctor, just acquired yesterday, is raising my antidepressant levels. We will see if that works.

My new roommate is cool. She is smart and funny. And maybe even a little stronger emotionally than me, what will we do for standing up to the political crap that goes on around here. Which will be good for all three of us. The house has been thrown into chaos because we are shortstaffed, and I am now the last one served out of three people instead of two. Sigh. But I'm working on changing that.

The best news is that I'm actually being a success raising money for my service dog so far. Almost $2000 that I know of. We've got a long way to go but we have started.

http://www.dogdreamteam.com

I got caught in actual Portland style of rain last night with Daniel on the way home. Besides the fact that we got soaking wet because we didn't bring coats, it was pretty fun and funny.

Now I'm off to wait for my friend Myra. She's bringing Atlantis, the service dog puppy she was raising for the Arizona Goldens, the organization I am going to get my dog through. Atlantis is ready to be returned to full-time trainers, so I will probably not see her again after today, which makes me sad because she really loves me.

I hope you all are well.

BREAKING NEWS!  My service dog dream is on its way to becoming a reality, and now you can help! Check out this page to see the dream in action and help me out as you're able; either by donating or passing it along to friends and neighbors. Thank you very much. I'm so excited! This is going to happen!

http://www.dogdreamteam.com is the site. Thanks to Daniel for setting me up with the URL that is easy to remember.

I love you all!

I'm really not sure what I feel like writing here. I'm OK pain wise, but really jumbled emotionally, which the doctors say it's to be expected, after a total hysterectomy, (and I'm only one week post operative) but it's hard to live through, especially when you've just been robbed and nobody is doing anything. I just want to be held for a long long time. To sleep and wake up in my love's arms, and feel totally relaxed and safe. Why does that seem to be too much to ask?

I am glad that my pain is much less now. Up until the day before yesterday, culminating in that day, the pain was unbearable, and I have lived through a lot of pain. I have been shown a picture of my incisions and resulting bruise which I cannot post here due to the area of my body it is in/what is also in the picture, but it's pretty bad. My doctor said they pulled out 10 fibroids, and that the stretching these caused, along with a bunch of scarring, made my uterus into the shape of Mickey Mouse. Not just the body. Ears and all. I will see those pictures when I go for my postop visit two weeks from today. I will not post those either, but I've been told some of them were pretty big.

And yes, I did say robbed. When I got back from the hospital, Daniel and I both noticed that the laptop that he brought over to use for working on the website update and other things while he was here; and also keeping my medical records in a secure place, was gone. And I did say nothing has been done because that is true too. It was either someone off the street, which is unlikely because they would've taken the lockboxes in office and the medication in my room, or it was someone who works here regularly. And I have my educated suspicions, but I have made no formal accusations toward particular people, only writing toward the company who allowed this to happen and asking for written documentation ensuring me that it is been taken care of properly. As of now I've been told by members of the state that no report has been filed, like they are supposed to, when people here lied to me straightfaced and told me that it had been filed. They also told me that because the laptop was not listed as mine, they were not going to do anything about it. Even though I was in my possession, and my private space that they were supposed to secure while I was gone.

I'm not taking this lying down, for my sake as well as Daniel's. Letters have been written and lawyers have been contacted. Because of the second fact, that is all I will say about the happenings for now.

But from a feeling perspective, it's really thrown me for a loop. The fact that either the house was on secure enough for someone to waltz right in and take it; or one of my caregivers, the people who see me in my most vulnerable states every day is really scary.

There are other things I can write about for now, but I'm in too much pain to think, so I will post this.

But in a positive ending type of spirit, I will say that I'm proud of myself for my ability to handle all the things that seems to be thrown at me in rapid succession lately. Because they warned me about out-of-control emotions, I've been trying to spend more time in positive meditative states, whatever that means for me in the moment. This is helping balance out some of the roller coaster, and Daniel has been awesome too, as per usual. And some new friends have been helpful as well.

This, too, shall pass...

Well, I know it's been a while since I wrote. But it's not been because nothing is happened. A lot has happened that I haven't been sure how to write about.

Most recently after my last blog, the manager of the house where I live's boss called me and began the conversation with "I don't want to put you in a bad mood, but...." So you know that's a bad sign. She began to ask me all these questions about my past, the abuse and everything. She told me I didn't have to be specific, but every time I tried to be general she wanted more specifics. And she kept saying stuff like "oh that's why you're like this, or that's why you have this fear...." It was horrible, and when I asked her what she was doing it for, a got worse. She apparently had to ride a psychological profile for the staff here to read. So not only do I not know what she's writing, I don't know what new people that work here are going to think about me. Nor do I know what her qualifications are for processing the information that she drew out of me. It brought up a lot of stuff that I wasn't ready to deal with in that moment. And I'm still dealing with now. It's really scary.

And I'm getting more and more afraid for my surgery, coming up next Thursday. Wednesday is going to suck because I can't eat anything but clear liquids and I have to drink about 8 ounces of liquid laxative in about 64 ounces of other liquid in an hour and a half in preparation for the hysterectomy the next day. And I don't know if they are going to be able to do the keyhole version, because my catheter hole is usually where they put the keyhole, so they might have to gut me like a fish; and I won't know until after I wake up. If I wake up. Yes, yes, I know I will. But that's one of my deepest fears about surgery.

Poor Daniel. My anxiety attacks about this have been coming more frequently, and all he can do is be there while I ride them out. Or, stay home and work more actively on the new version of the site, which I'm happy to inform Daniele that he has been doing a little more. However, the day you come home from camp is the day before I go into surgery, so if it's not quite finished by then, don't blame either of us, OK? :-).

I like it when he's here, of course, but I feel bad for him sometimes, because in this hot weather, there is nothing we can do outside of my house anyway, so we usually end up on our respective computers anyway. So we figure productiveness is better. I know he's here because he wants to be here, but I know the anxiety is frustrating because apparently I take it out on him sometimes if it gets really bad.

Especially if I'm on Percocet pain medicine at home, or morphine, in the hospital. That stuff does weird things to my brain, and makes me feel very angry at all the unjust things all at once. And there is no escape from it. It's like I'm stuck in an infinite loop of anger and pain. It's horrible. I try not to take it out on people, but apparently, I do. Daniel, I want you to know that I'm very sorry, and that if it is up to me, I will never take either one of those ever again. I've already put it down as a bad interaction, so they should be able to find something else.

I'm not sure where all this fear is coming from, or why it won't go away. I've tried to do lots of things to calm the nightmares and the anger, but nothing works permanently, although without the added effect of the pain medicine, I'm better able to control it.

I never was really ignoring it before, I had just put it somewhere where it didn't really take over my daily life. But I think that lady making me dredge through a lot of personal stuff to her, a near perfect stranger, and have her be so flippant about it, took it out of the organized place where I was just able to sit with it, and now it won't be quiet enough to just sit still. And I'm not allowed to take that much pain medicine this week, because a lot of them are considered blood thinning agents, which are bad before this kind of surgery. And pain makes stronger emotion harder to deal with.

So I'm not sure what to do except realize that this is normal in the human experience and just keep moving the best that I can. And remember that I'm loved and strong and at least in the starting place where I wanted to be. Nothing worth doing or going through is easy. I know this. But that doesn't make waiting for the easier parts any easier. Ironic, kind of.

Some good news is that I found out that I'm going to be an aunt around January sometime! I'm very excited. I can't wait. But this is also bringing up ghosts, because I've always wanted to be a mother, and I almost was once a long time ago, and after I have this surgery, I won't be able to anymore, naturally. Dreams hurt when they die.

I also feel like, for some unknown reason, I won't be a whole woman, or as attractive. Weird thoughts. I know I'm doing this for my health and for pain relief, so it is good, but still hard nonetheless.

So that's what I'm working with right now. No neat little conclusion I can tie up in a box, no settled ending that I can come up with for this entry, but at least now you know where I am, and I'm trying to stay strong, and that I'm working on my own health. Fear is not going to control my whole life, but it's definitely a companion right now. And I guess that's OK, as long as I know that I'm Amber above and beyond it.

And that's the only thing anyone can ever ask me to be.

Well, it's the first day of summer. And for the first time in a long time in my life, it actually feels like summer. :-). We are on our way to around 104° today. That's not bad. It doesn't feel really hot until about 106°. :-). See? I'm becoming a native.

I've been quiet here because I was in the hospital again for eight days until last Friday. The usual bladder infection plus dehydration. Sigh. This is getting old. But at least they know how to take care of me. I was drinking, but I caught the flu or something and was sick to my stomach every time I tried to put anything, even just liquid, it it. This is not good in the desert. And then when I got back, I kept getting sick, because I had become physically dependent on the morphine they were giving me for pain. Good times, let me tell you. Sigh. Today, so far, I've not been shaking, so maybe I'm clear of it. The next stay over at my hotel will be on the 15th of next month, for my operation. I'm not looking forward to it, but the end result will probably reduce my pain level greatly, so it's a good thing.

I got some scary news yesterday. I got a nonchalant letter in the mail informing me that starting on July 1, they are raising the percentage I have to pay out of my money for rent from 70% to 88%. This means I'm going from around $220 spendable per month to exactly $81 spendable per month. I'm pretty scared and angry. Stupid budget cuts. Why do they have to cut me first? I'm afraid I'm going to lose my Internet and phone, or if I keep those, not be able to do anything else outside, because transportation is expensive here. I have informed my family, but we will see how much they actually pitch in. I know I will be OK, as in survive, whatever happens, because I have a roof over my head and food. But it still is very frustrating. If anyone would like to, or is able to, use the donate button on this page, it would be greatly appreciated. Otherwise, just pray for me as I find viable alternatives and go through the appeals process.

In wonderful news, to balance it out, Daniel and I have been together for a year now. It's been a great year, probably the best of my life. Definitely the most challenging/stretching, strongest, most honest, fullest, and most comfortable and the safest (emotionally) year. Whatever craziness is going on, I know that he is there and that we will be OK. It makes everything a little better to have someone by my side. Even the really crappy stuff, we can laugh and roll our eyes at, knowing that we will remain strong with love. Thank you so much for everything. I am in awe of the person you are everyday; and equally amazed at the person you are helping me become; or at least helping me see what already existed. I love you.

And so we press onward, deeper into the unknown. But most always with the sun on my back. Safe journey to everyone, and happy summer!

I got some news today which threw me for a loop, even though it feels like it shouldn't have.

On Friday night, my uncle Andy was riding his motorcycle without a helmet after dark when he hit a deer. This sent him spinning, and he hit some concrete, and died instantly. He and my aunt were living apart to figure things out, but they were working on it. Anyway, they tried to call her on the cell phone they found on him, but the battery was dead. So my aunt found out the next day when she happened to come by the house he was staying at and see police cars.

So why does this feel like it shouldn't have thrown me? I didn't know uncle Andy. He was my Aunt Heidi's second husband, and I haven't seen her for so long that I never had the pleasure of meeting him. They've been married for at least 10 years. Sigh. Heidi is one of my favorites, if not the favorite in memory, because she is my dad's baby sister, the youngest of seven, and when I was little, I always felt she was the closest to my age, and therefore the most with it. We even graduated from the same high school, although she when I was like seven or around there, and me 15 years ago in a few days. She might not know she was my favorite because it's been forever since we got to be together, but she was.

That's what throws me for a loop. Everyone is there for her right now, both of her parents and every brother and sister that can make it away from work. And a handful of her nieces and nephews. Except for me. When I really want to be.

Why? This fucking disability. The same thing that keeps me from seeing most of them regularly, the same thing that kept me from properly growing up with and getting to know my cousins, and has made me miss the bulk of family reunions, celebrations, and sadness.

It's also the same thing that prevents me from traveling at will, on my own, or with my boyfriend, so that I will miss the bulk of those family reunions, celebrations, and sadnesses as well. Hell, I can't even lay beside him when I want to, let alone go anywhere with him that doesn't involve walking or the bus. And it hurts more because I know that affects him too. All of it, the traveling and the simple things.

I don't know if it bothers him as much as it does me; he appears so much more Zen about these things than I am. Annoyingly so sometimes, because I need to know that what I'm feeling isn't just me. But I have never attempted to change him or his reaction to things, and I'm not about to start now. But I know I strongly wish to be as strong as he is.

Poor guy. He doesn't know what to tell me, so the only thing he says is that sometimes, life just isn't fair/sucks monkey balls. I know this.

But does that mean I can't be sad/frustrated/angry about the things that have been taken away from me because of a hand I've been dealt? I hope not, because I am. All of the above. I don't understand why it had to be me or anybody.. And all the people that say this is a gift, most of the time my head knows exactly what you mean. But for now, fuck you very much, and come back another day, or week, or month, or never if you choose, because if you are somebody that can't deal with questions, even toward God, this is not your blog to read.

Cerebral palsy is not a gift. It's not a gift not to be able to travel or sleep next to the one who is proud to bear the term lover, even if that's not literally physical at the moment. It's not a gift to not even be able to communicate traditionally or be left alone for one second with that person, for fear they could start a seizure or stop breathing. It's not a gift to have to sit and watch what you perceive sometimes as the best parts of life passing you by. It's a burden that we carry, and that's why we were called burdens sometimes, because people had to carry us.

I'm not saying there is nothing good about life. The real gifts come from what you do with your cerebral palsy or other disability, or more accurately in spite of it, or maybe if you're lucky, surrounding it. Like you write a book about your experiences.

Or like my friend Danielle, who despite the lack of privacy or traditional communication, spends as much time as she can with her loved one, and they find their magic in handholding and prayer. If you want to know more about how she finds such gifts in spite of her limitations, her blog can be found by clicking her name above.

And Daniel and I spend a lot of time together as well, even if it's just to work or play on our respective computers because it's too hot for outdoor adventures. The stillness frustrates me sometimes, because for someone strapped to a wheelchair, I hate sitting still; but I know the important part, and the part that we will treasure when we remember it, is that we were together.

Danielle might have a different perspective than me, she is generally a lot more positive than I feel at the moment, but she's also real, so I'm sure she would agree with most of what I say about the difference in gifts. And I look up to her always and quietly nod to her in deference to the fact that we are traveling very similar paths.

And naturally, everyone's favorite stories to tell are the ones where they travel or have other fantastic experiences totally inaccessible to me. Does the fact that this stings a little when I'm in this frame of mind mean that I should tell everyone to stop telling the stories? No, because then nobody would ever talk to me.

But I just have to be free to acknowledge that it does sting sometimes, without the fear of somebody telling me that I should be grateful for what I have (because I know this and I am but that's beside the point) or that I should just be waiting for Jesus who will make me be perfect and walking and running. (For the record, I do believe this, even on my doubting days, and I am waiting for it, I just believe that we should be doing something while we are waiting; otherwise, what is the point?)

So, in this moment, it kind of sucks to be me. I know somewhere in my head that I will probably wake up tomorrow with a better perspective, although right now I kind of doubt it, because the routine of here never seems to change, especially when I can't leave the house. But I'm open to the fact that I might, and every morning I wake up and see the sun and feel myself breathing, which is better than I would have had him I had stayed in Oregon.

So I always start out grateful, which is a good base. Where I go from there is anyone's guess, but my key is that I always look at the possibilities incredulously; and I have the ability to experience and also Chronicle/journal about my experience. Translation: if I wanted to, I could make eating a grilled cheese sandwich sound poetic. Giggle. Well, now I'm laughing again, which is a good thing.

If nothing else, I always wonder what will be written here the next time I write. So thank you for joining the journey.

Oh, and always wear the appropriate safety apparatus when traveling, and ALWAYS tell people you love them before they leave or you hang up the phone. And try your best to mean it. Because, unfortunately, it is true that someday you are going to wish you did if you didn't.

Hugs to everyone and prayers to those who need them.