My family, musings and life in the turtle pond

Posts tagged ‘AIDS’

Turtle:the human(medical) pin cushion

I am seriously starting to feel like a pin cushion! Today I had multiple appointments and it seems like every single one of them involved some kind of needles. I had to have a blood draw that seemed to last for ever, an IV for my pain medications and treatment, and a shot.And My oxygen, but that is a clip, not really a needle.But I am so sensitive to the feeling of it, that it might as well have been a needle! OUCH!

So when I got home, I hauled my hurting body to the chair to catch up on homework, and promptly fell asleep. And slept all day. that was after I got stuck in the elevator,of course! I hate that elevator. Its so heavy that I don’t have the strength to open it, and had to wait for someone else to let me out. Usually I would have taken the stairs,but I didn’t have the energy to climb 3 flights.

I am trying to stay positive,but I am just so tired and worn down.I don’t even have enough energy to keep my sense of humor. I’m really not getting on the “why me” gerbil wheel, but I am having a hard day. I just don’t have anything left to give,and there are so many things that i want to do. Its frustrating that my body is refusing to do the things I want to do;basic things that everyone does to take care of themselves. I knew this was coming, but I’m still shocked about how fast. I’m not ready!!!!!

I have spent most of this evening curled up on my chair, with my six year old in my lap. Lately he’s been spending as much time as possible as close to me as possible.I have to admit its not as close as he’d like sometimes, Since Tadgh or Spikey is usually in my lap, and when they aren’t there’s a lot of medical equipment (his and mine) in the way. But he’s been totally ignoring it and sitting on my feet folding his origami or signing me stories about his days at kinder.While I was asleep, he even sat on the floor and slept too, leaning against me. He always want me in his sight.

Can’t say I blame him. The poor kid’s been through more than any child should, and he’s only six!!!He just got a new feeding tube, and one implant to help him hear. And that was his 18thor 19th surgery that we know about. His bio mom died of AIDS complications when he was just 3. And right now one of his other moms is deployed.I’m sure he knows part of what happened his mom (mama Angel) and might be matching that with whats happening to me. He’s one of those kids thats wise beyond his years.I cry a lot when the kids are asleep,because it breaks my heart what they have to deal with.

*sigh* It’s going to be another tearful,pain filled night. And i hate that. But what I hate more is that its changing who I am so much. I am usually active and fun loving and have a sense of humor. Today I’m tired,cross, bitter  and feel like my ribs are trying tosquash me every time I breathe.


another crying day!

I should have known when I got up today that it wasn’t worth the bother. The first thing that happened was getting locked in the bathroom. Yeah, I had such a bad time with getting my hand to work that I couldn’t unlock the door! Then getting dressed was so hard that it hurt me.I had to ask my oldest to help out with dressing and getting breakfast in me instead of on me.

My pain was so bad that I ended up at the hospital having to get pain shots. I hate having to get pain shots! But even with them, I can only lie on my bed for the  most part.And I had to rely on the kids to do everything for me. Do you have any idea how embarrassing it is to have to rely on your kids? let alone how hard on the kids that it is.

And then I wasn’t able to go to class when I was supposed to be on the debate team.I couldn’t do it! and I hated that. I wanted to do it so badly!!I really love that class. And this is the second activity I’ve had to miss in two weeks!!!!I couldn’t go to my evening class either. I was supposed to take my midterm in my other class.*sigh*But there was no way I would be able to go to a night class.

I have cried so much today that I’m cried out. Its not that I feel better, I just have no tears  left! I feel a lone,and scared and hurting.I have only my kids here right now,and i have to be strong for them.I can’t talk to RY, because we video chatted last week, and we only get one call a month, and only if they’re in a secure area. I don’t want to scare the kids worse than they already are. The older ones are having a hard time handling things as it is, and the younger ones don’t have any concept of death or dying but know something is going on. I hate what I’m doing to them. My sons have already had one mother die, and now they have me here and Ry away until who knows when. I mean she was supposed to come home a month ago, but her deployment got extended(again). When I look at my kids I cry inside too, because in trying to do what was right (adopting them all) I have now put them in the position of watching a second mother die of pretty much the same thing that killed their biological mom.How much am I putting them through? People keep telling me that they’ll be okay and that kids are like rubber bands. But even a rubber band eventually gets stretched too thin.

I wonder how many people really know just how bad things are. I have already outlived my 6 to 9 weeks by 3 months. But instead of cheering each week makes me more and more worried. Because I know now my time is completely borrowed. And how long can that go on? I don’t know why it makes me upset to keep living. Each day is another day that I can see my 5 month old smile, watch my 17 month old wobble (she’s so not even toddling yet). I can cuddle with my six year old, who is just recovering from his something teenth surgery.(we never did get a complete health record for him.) I can laugh with my kids and spend time with my friends. So all of those are good things. So why do they make me cry?

And back to the school Issue. Part of what upsets me is that my medical conditions are starting to make it look like I’m a flake! And I’m truly not. If only they knew how bad I feel about missing a class, how much it ties me in knots. I wish they knew.

I wish they knew exactly what is going on. But I am also not sure what would happen if I do. I work with kids and i don’t want to jeopardize that. So I say what I can. I live in a Positive living building, and work with kids who have parents dying from the diseases that accompany AIDS. I always hope that they will put two and two together. Its cancer and heart failure and the effects of a car wreck  that’s actually killing me anyway, so maybe I can hide behind that. But I shouldn’t have to hide. I shouldn’t have to apologize when I have seizures or I’m in so much pain I can’t sit up. I just want to be treated like a human. And right now I just want a hug. But most people are afraid to, mostly because they are afraid to hurt me. The lack of contact hurts me worse!

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