Amber's Abode

I get knocked down, but I get up again...

Wow.  I have been on one hell of a ride since I wrote something here last.  I was in the hospital for 12 days again for an infection and for some abnormal pain they still don't know for sure what the cause of it is.  It also turned out that I could not go back to where I had been living, because most of the residents either died or went into the hospital themselves; and the safe caregivers departed, escaping for parts unknown, never to return.  I hope they are okay.

So, after huge amounts of state paperwork, bureaucracy, and bullshit, they sent me here, to a house in Chandler.  I still can't believe it.  Seems too good to be true.  For as of right now, the house is my own.  Meaning, it's considered a group home, but I'm the only resident, and the caregivers don't live here, they come in shifts.  In the evening and at night, there is always at least one person here for me.  The day person usually gets me up and then leaves for a few hours to do errands and office related stuff, but I'm always near a phone where I can call out if I need help.  There is also a van to take me some places I need to go, but only a handful of the caregivers are licensed to drive consumers.  Consumer is the word they use instead of resident or patient here.  I like it better.

I get to choose my own bedtime, wake-up time, and meals.  This truly is my own house.  All this freedom makes me feel a little weird/dizzy, because I'm not used to it.  For example, I've had a difficult time creating menus because I truly haven't thought about what I like to eat in a long time.  The same with clothing outfits.

And Daniel and I are having an interesting time figuring out to be a couple again, instead of just the relationship that we've been used to out of necessity, which is more like the client/patient relationship, or patient/advocate.  No longer does he have to come over every day because he is afraid for my safety.  He can just come over whenever he wants because he wants to, which is an awesome but strange change after so long of the other way.  But I know he knows that I will always need him, even if the need is no longer to fill out mounds of paperwork.  At least, I hope he knows that.  :-).

The not so good stuff includes the fact that my chair died.  So now I'm sitting for god knows how long in a really uncomfortable manual wheelchair.  Which also means that I cannot move anywhere without the help of someone else.  Which pretty well sucks monkey balls.  They are just now coming on Monday to pick up my power chair for repairs, and it has been broken for over a week now.  Wheelchair repair shops are very similar and how they work to used car repair shops, to give you an idea of how things work.  They are supposed to give me a loaner.  That is, if and when they can find one.  Sigh.  I don't think I'm going to get to do much exploring of my new city until after the summer, because it's starting to get pretty warm during the day already.  Shortly after my birthday on May 1, reportedly it will start getting so warm that I will seek mostly to sit in air-conditioned places.  By about the end of June, I won't have a choice.  Still, I would rather have a few months of the extreme heat than the extreme rain for nine months that I recently escaped from.  At least here, I will always be able to see my beloved sun through the window.

My dad is supposedly coming sometime in April to visit.  My stepmom is not coming, because she is deathly afraid of flying.  That makes me sad.  However, I'm not really holding my breath that my dad will show up either, because every time I talk to him on the phone, he still has yet to buy the ticket.  I roll my eyes anyway, because this is the same guy who said really mean things to me right after I moved because I left him and he was never going to see me again.  And suddenly now he is just figuring out how to buy a plane ticket?  Right.  He probably just doesn't want to be shown up by his brother, my uncle Brian, who has offered me overnight hospitality at his house on the weekends twice now; something my dad has been "unable" to do for years, even when I lived really close to him.  (I live about an hour and a half or so away from Brian.)

There is another factor.  Family curiosity always piques into a veritable frenzy whenever they hear I am in any kind of romantic/physical/committed relationship.  Simply put, they are all dying to learn more about this Daniel person.  Not necessarily because they are happy for me.  The family dynamic is that they are more scared of anything or person that takes emotional power or time away from them.  And, like everyone else in my life that doesn't understand disabilities, they are also intensely curious about the mechanics of our physical relationship.  They might even ask straight out.  Good God, I pray that they don't.

Thankfully, my uncle and aunt and grandparents, all of whom I have visited since I have moved here, actually respect my adulthood and keep their curious wondering to themselves.  Brian even actually told us that we are allowed to stay in the same room when we both are invited there overnight.  That was huge for him, and it means they have completely accepted Daniel into the family, which makes me very happy.  We still honor the boundaries they are trying to teach their son and grandchildren though, out of respect.  But it meant a lot just to have the conversation.

At least, if and when dad or anyone else comes, I'll have a cool house and situation to show them, instead of a nursing home or other pathetic setting.

There is more to write, but I will save it for another entry, because I don't even have live Internet again yet until Wednesday, which is when I will post this one.  (This was actually written on Saturday evening, March 6, in case I can't figure out how to backdate here yet.) I just wanted to let everyone know that I'm alive, back in the digital world, and rather surprisingly, doing pretty well.

I hope you are all well and happy.  I miss all of you, but like I say a lot lately, I'm more and more convinced that I'm in the right place now.  I mean, I have my own house!  I never thought I would ever be able to say that, at least not this soon into the journey.  Bring on the housewarming party!

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