Amber's Abode

Here I go again on my own...

So by now you're probably wondering why I haven't written in awhile.  Or maybe you have guessed that it's the same song different verse.  And you'd be right.  Another bladder infection worse this time.  Hard-core antibiotics for two weeks which make me want to do nothing but sit and stare at the TV or sleep.  Some days I don't even get out of bed.  If I had the energy for it, I would be highly frustrated.

Actually, I am highly frustrated.  Because the truth of the matter is that I'm going to have to move again once I get the energy to do so.  They cannot take care of my catheter here.  Something happened to the company, and all my allies are leaving, including the nurse, and just tonight, one of my favorite caregivers.  I love this apartment, but what good is an awesome space if you never have the energy to use it or move beyond it?  I was lied to when I came here.  I was told they could care for me when clearly they can not.  I figured this would be too good to be true for very long.

I hate the fact that this keeps happening to me.  I hate the fact that I can never find a home.  I do want to go to Arizona, very badly, but unless somebody wants to hand me a ton of money and a caregiver, I have no way to get there.  So I have to go somewhere else in between.  Apparently only a nursing home or foster care would really work for me.  I was better when I was in the house in the suburb across the river, even if I was a little unhappy at the restrictions of time and distance from my friends.  I might as well still live there for as often as I see them.  I hope you had a great birthday, Nick.  I'm really sorry I couldn't make it, but I didn't make it out of bed.  I was too dizzy.  Today the dizziness was a little better, but the fatigue is still extreme.  So maybe a foster care would be better again.  My old caregiver told me about this place that she works.  It's called good Shepherd homes.  I thought they only took mentally challenged people, but I guess that is not true.  They would take me as well.  I would have to be okay with living around mentally challenged people, but at this point, anyone is okay, as long as someone can take care of me.  I don't know.  I'm actually pretty scared and at the moment feel like giving up.

Because the honest truth is that I wasn't really much better from the bladder infections wherever I live.  I had a antibiotic pump at the home where the caregivers were so nice to me.  That was probably the worst so far.  And I even had a nurse looking in on me.  So I'm beginning to feel panicked that as long as I have this catheter, I'm going to be sick or if I'm not feeling sick, just a few days from it.  I'm trying to talk to my doctor about maybe removing it, but nobody suggests that either.  Said I would probably still have the infection and also skin breakdown from constant wetness because I have no bladder control any more, and because of my disability, that cannot be retrained.  So even without the infections I would have no life because I would literally have to stop everything and have diapers changed every hour and a half or so.

I really don't know which path I should go down or what I should do.  I have a feeling a decision will be made for me sooner or later one way or the other.  I do have to move from this place as soon as possible I'm afraid.  But my doctor says I should finish the course of treatment first.  I'm really really discouraged.  I want a distraction other than TV or movies, so I was going to try the Sims, which the new one is out now, but it's almost $50, and there's probably better ways to spend my money.  :-).

And one of my good friends is also still pretty sick and tired.  I'm really worried about him, but at least he seems to have some peace about where his path is taking him now.  I envy him that, even though I will miss him if he goes away.  He is facing a sooner end so to speak than the rest of us, although no one really knows for sure, and yet there is such peace.  He talks to me almost every day still, to try to encourage me and tell me he is praying for me.  That makes me happy and sad the same time, sad because it makes me wish I could be stronger through my own journey.  But I am aware that this is my own journey, and I'm trying to let myself be whatever I am at the moment.

Mostly right now I'm scared.  But there is also a strange small peace.  Because I somehow know that whatever happens I will be okay.  It's just I'm tired of the journey and I wish I could rest for awhile.  I guess that's why I wanted to escape into the Sims.  Make a better life than this one.  :-).  I guess it's good that I can still kind of laugh at myself.

Thank you to all the people that do care about me.  I hope you all are doing okay and I will write again when I can to let you know what's going on.  Thank you for all of your prayers and positive energy.  I love you all.

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