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Since the dialysis non drama is over, I figured I'd change this to an anything or whatever blog. Could still be dialysis related,... or not

my old blog, from 2005ish to 2008


10 September 14

The void in my life

I woke this morning from a dreamless sleep. I hate dreamless sleep. It frightens me. It’s like a void in consciousness where you are somewhat aware, but you are in a black nothing. I sometimes wonder if that is what it will feel like to be dead. I’m so glad it doesn’t happen very often.

From the void, I began thinking about love, and if I will ever find it, or if I’ll just always be alone. It’s not like I’m not happy being alone. I’ve always been alone, really, from the time I was a child. I never had many friends. When I was six, my parents made me one, my little brother. He was my playmate, my tormentor, my greatest ally, and my darkest foe. We are still close and I don’t think that is something that will ever leave us, but still he has left me alone as well. He grew up, and now has a family of his own, and doens’t have the time he once did for me.

Being alone at lot gives me time to think, or maybe overthink, about the love I would like to have. I wish for someone who I can wrap my arms around at night and fall asleep happy. I wish for someone who will love me for me and all my crazyness. I have a lot of weird quirks that could drive a person insane. I’m sure my best friend will agree with me. She’s never said so, but I know I can get on her last nerve sometimes, but she seems to have accepted that part of me. I’ve never met anyone who was that tolerant and intolerant of me at the same time. Now, if I could only find that in someone who wants me as more than a friend.

The lonely part of being alone must be coming out in me more than it used to. The long for the touch of another human, I’m sure, is a common one, but not one that I’m overly fond of. It gets more and more painful as time goes on and nothing changes. I wish I knew how to make that change.

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31 August 14
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28 August 14

Nurses. Friends we’re not allowed to have on Facebook.

I had a dream about one of my dialysis nurses the other night. I was upset because she told me she was leaving.  When I started thinking about it, I realized that I hadn’t seen her in a while.  

I think I need to explain something before I go on.  When you go to dialysis, you see the same nurses three days a week for years on end. You get to know them really well, more than you would if you were an impatient in a hospital. They become like family, and when one is missing, you notice.

This particular nurse is one of my favorites.  I’ve been coming to this unit for almost six years, and she was here before that.  We have funny stories that we can tell about each other, stories that we will both probably tell long after I no longer need this treatment.

A few years ago, this particular nurse had cancer, and she was off work for a while.  I worried about her, and I was glad when she returned.  When I told her that I’d missed her, she gave me a hug.

I noticed a while ago that she wasn’t here.  All I knew was that she was sick, and that’s all anyone would say.  She came in one day, saying hello to everyone.  I knew she was at the hospital for a medical appointment, though.  She had a blood requisition in her hand.

When I had the dream the other night, it got me thinking about how long she’s been gone. I’d say that it’s been a few months. I worried that maybe she’d left her job completely. I asked one of the nurses, who I thought would tell me what was going on. She told me that she didn’t really know, just that this nurse had been sick and had been having trouble transitioning back. She didn’t know if this nurse had gotten sick again or not.

So, now I’m worried. I don’t think she would leave her job without coming in to say goodbye. There are other patients who’ve been at this longer than I have, and we all get attached. I just hope she’s doing okay.

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2 August 14

Is it abandonment?

I was reading a thread in one of my dialysis and transplant groups started by a man who was hurt that no one in his large extended family had ever stepped up to give him a kidney. He said that in the beginning a few said they would be tested, but whenever he mentioned it, they would change the subject. He was upset because it’s hard enough to find a donor, but to have people say they would be tested, then never say anything about it again is frustrating, especially if you’re on dialysis already.

I can relate. Though my parents and my brother can’t donate because they don’t match, I have 20+ cousins on both sides of my family. Some of them are ruled out because of their own health issues, but the rest, except one, has stayed quiet. That one said no. Though she was mean about it, I give her credit for at least answering the question. No one else has.

This fellow was wondering if he should just write off these family members, because they seemed to ignore his plight. I had no real answer for him. I don’t think I could just turn my back on my family, even if they didn’t or didn’t want to understand what it is that I’m doing, but I can understand the feeling of abandonment that he has. When the people who are supposed to love you the most leave you doing an invasive treatment that keeps you alive, without even trying to do anything to make it better for you, you wonder how much they value you.

I think, however, that it’s not that they don’t value you. It’s more that they don’t understand what you do, or what they need to do to help. It’s up to us as patients to educate those around us. It’s why I post articles about organ donation on my facebook page and twitter. I post images that explain who you cna donate to by blood type, or links to organ donor awareness organizations that can explain how donation works much better than I ever could.

For me, it doesn’t really matter anymore. I’ve been “on hold” on the transplant list since February of 2013, which basically means that I’m on the transplant list, but if a kidney should come up that matches me, I won’t get it. I can’t have a live donation unless I’m active on that list, and I don’t know when that will be again, if ever.

I believe that my family loves me, but they don’t really understand what it is I do, and they rarely see me on my “bad days” so they figure I must be doing okay. My guess is, that that is how it is with most families. Unless they spend a great amount of time with you, they don’t really know how hard dialysis really is, and think it’ll be okay for you to wait years for a kidney that matches to come up. it’s not abandonment, just unfamiliarity and fear.

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27 July 14

To Chrystal, my lost “Sister”

I can’t believe it’s been 12 years. 12 years without you. I think about you and I miss you every day. Your babies have grown into beautiful young adults. I think you’d be proud of them.

I wonder sometimes, if you were still here, would you have dove headfirst into the fandoms that I have? Harry Potter, Twilight, The Hunger Games. Would you have read every book, and gone to every Midnight Movie showing? Would you watch Frozen with me, over and over and over again? Could I have gotten you interested enough in politics to watch The Daily Show and The Colbert Report with me? Would you have come to New York with me to see the tapings? Wow, you and I wandering Manhattan; we’d be two lost sheep wandering into the wolf’s den. *L* I think you and Kelly would get on like a house on fire. Then I’d have two best friends that I love with all my heart.

Would you have hung out in dialysis with me? Or met me downtown afterwards for lunch? When I needed to lose weight to get back on the transplant list, would you have come to drag me all over town, just so that I wouldn’t be sat at home on my behind? Would you have come to see me in the hospital, when I was so sick that I almost died?

Would we play Animal Crossing together? That would be a hoot. We’d be shaking trees and catching bugs and fish, trading items and playing games on Tortimer Island. Would you help me prepare for the Jeopardy online test every year?

I sometimes wonder, if you were still here, would I have done any of the things that I’ve done? Would I have even started watching Colbert? Would I have gone to New York? Would I have met Kelly? Though, I’m pretty sure you had something to do with that. I think you knew that Kelly and I needed each other, and I thank you for that and for her.

I still love you, and I will love you forever. Though the ache has subsided, for the most part, I still have a wound that will never fully heal, because you are not here. I know that it wasn’t your choice to go, and that if you had your way, you’d still be here, driving me crazy, and making me laugh. I take solace in knowing that I’ll see you again someday, and that you’re watching over us; me, your mom and dad, your brother and sisters, and your kids.

Until we meet again,
Your loving “Sister”

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Themed by Hunson. Originally by Josh