I have to start off by saying I wasn’t lying to make you feel bad. Quite the opposite. I was concealing truth because I didn’t want you to feel bad. Sometimes, I wasn’t really lying, I just wasn’t really saying what I wanted to when you asked me certain things. It’s not because I don’t like you. In fact, if I lie to you about certain things, it’s because I do like you. I like you a lot.
Sure, there are some people I tell every little detail to. (In small doses. I really don’t want to be “that person” going on and on about the same thing all the time!) There’s no rhyme or reason for this. Maybe they just caught me on a day when I was more forthcoming about my personal life than I like to be. Perhaps I was caught off guard, in a moment where I didn’t really have the strength or energy to put on my “I feel so good” facade. Who knows?
Here’s an opportunity to peek into my life for a minute. I don’t want to focus too much on the past. It was another lifetime ago, really. Two years ago feels like another lifetime ago these days. But, I’ll get to that. I’m going to do something I don’t really do so much anymore, and that’s be honest about what it’s like to live inside this body of mine. It’s not easy. For the past decade it hasn’t been easy and it’s not getting any easier. In fact, it’s hard. It’s very hard.
When I was younger my siblings and I got tested to see if we carried the gene to pass on Polycystic Kidney Disease. My grandfather had it. My uncle had it. My brother has it. My mother has it. (50% of these people are no longer with us due to complications from PKD.) It’s a genetic thing. These tests aren’t totally accurate and less so back then. They’re more inaccurate if you get a negative result. The test may say you don’t have the gene to pass it on, when in actuality, you do and find out later when cysts start growing on your kidneys. You can google your stats on PKD if you want. You can google PKD if you want. I don’t want to list all the facts and figures right now. If you are faint of heart or have a weak stomach, I highly recommend not google image searching the disease. But, if you do, most of the time that’s all people need to understand. “Wait…so…that…all that…that’s…like…inside of you?!” I nod. They cringe. They stop telling me to “Feel better soon.” (More on this later.)
Yes, all of that is inside of me. My left kidney has now doubled in size with the right one not too far behind. There is not so much room inside this little body of mine anymore. There is no getting around waddling like a duck. There is no escaping the “man, I look like I’m pregnant today” feeling. There’s no way to not feel cyst pain in even the slightest of movements. This disease isn’t new to me. I was diagnosed young after testing positive for the gene test and getting a kidney ultrasound. I was told, “It won’t affect you until you’re very old.” They lied. I’m 34 and the symptoms only get worse as they show up.
I was 25 when it started “affecting me”. It was something always in the back of my mind, sure. I thought about it. “I wonder when…” etc. I can assure you that I wasn’t thinking about it at all at age 25. I had a good job. I had an apartment with roommates. I had just finished paying off my car. I was social. I was active. I would write for hours and hours at a time. Life was great and even though I had been through rough times I insisted on staying as positive as I could and just living as happily as my life situation allowed. (Sure there were times in my life I struggled to just get through it. We all have those times.) That attitude hasn’t changed since the symptoms took over. It’s just a lot harder to maintain positivity and I also let myself get as low as I can because I need that sometimes. I need that all the time. I need to just be.
My kidneys started hurting a week after my 25th birthday and they haven’t stopped. Six months later, I had my first “known and obvious” seizure. It took years to finally figure out that I have had seizures my whole life. They just were misdiagnosed when I was younger. (I had some sickly issues as a kid. As I aged, it just faded into the background and I didn’t have to think about things I went through until much later.) I started having 10-20 seizures a day. I have irreversible nerve damage from them and from the slew of medications doctors tried me on when I willingly allowed myself to be a guinea pig for the medical community for about three years. I really regret that, honestly, since I’m doing so much better now with CBD oil than any anti convulsant medication ever did. I now have 1-2 a month seizure wise if that. It’s a shame I couldn’t have had access to that medicine sooner, but I’m a big believer in “everything happens for a reason.” Also, I shouldn’t say I regret anything. I really don’t. I just wish I had more trust in my own body than the words of others back then. It would have saved me some suffering. Suffering brings me things though. Appreciation for the little things. The ability to really listen to others when they have something to say. Mindfulness. All kinds of things I was always too busy to notice when I was working and being socially active and not really taking too much time to just relax. It sucks living like this. I’m not sugarcoating that anymore. But I will say there is a lot that living with a chronic illness can teach you.
Let’s move past those early years after “life went to Hell” and focus on two years ago. The first thing i noticed was my energy level. It was fading. Slowly at first and then suddenly I was falling asleep while watching TV. That’s unheard of for me. If anything, I have struggled with sleeping most of my life. I would go days without sleeping in the past when the seizures were really bad. I was sleeping 9 hours. A few times 12 hours a day. This bugged me out. It seemed to get a little better once winter rolled around. Winter is my absolute favorite. I love cold. I love snow. I don’t get much of these living in Las Vegas, but the cooler the temperature, the better I feel. Fall and winter were always my “thrive time.” Minimal pain. Lots of energy. I was ready to kick life’s butt!
The temperature was colder. Christmas was coming. Something was wrong though. I wasn’t feeling as good as I usually did. I was still struggling with tiredness, pain, etc. I felt like it was summer in my body still to an extent. I wanted to feel better. I was pissed. This led to depression. This depression lasted awhile even though some really cool life events happened for me. All good things. I took a cool trip up north and had a great time and was pretty active up there. I kind of didn’t let myself rest because I was on vacation, but still. I was smiling through all this crap and this feeling inside me that things were going to change. Also, I could swear my kidneys were bigger. They just felt so much bigger. It was harder to do things. Simple things. When I got back from vacation I decided to just ignore all these symptoms. Keep fighting. Keep going. Keep pushing.
I wrote and wrote and wrote and wrote. I left Facebook because it was killing me to have to see such nonsense all day long and instead threw myself into Twitter poetry prompts with all I had. I also got back into submitting things to literary magazines, which I hadn’t done since before I fell ill. I was scoring higher in the “acceptance” column than I was in the “rejection” column so that makes me pretty happy. Whether I’m paid or not, self published or accepted for publication somewhere, writing in my journal or writing something to share with everyone, I still love doing it. I don’t think I’ll ever stop completely. I just need to slow down from it. Write in my journal more. Get feelings out. Stop censoring myself. I think the fact that my Twitter grew so much because of writing prompts made me a little scared. More people were reading my blog and my Twitter and the rare moments I got personal it felt like it was just opening this window for strangers to say all kinds of things and I never knew how to respond to it all because my anxiety lately especially when talking with people is like it’s never been before. I never struggled so much with talking to others. I think a lot of the things I see on social media and in real life made me want to be silent more. (I’m not sure of this yet. That’s for another blog maybe.) So, anyway, I became obsessed with writing again like I had been in my early twenties. It felt great emotionally and mentally. I felt accomplished. I was completely out of the pains of my body. I was floating around the Twittersphere like a madwoman. I was really hurting myself and I didn’t even know it.
Last April, I went for a kidney ultrasound. I get these about once a year just to keep track of how things look. (Maybe it’s to see if a miracle has happened and all the cysts will just be gone one day…wouldn’t that be amazing? 🙂 ) I noticed when the tech was scanning my left side that it hurt really really badly. I told her so. She said she was sorry of course and then mentioned that people’s left kidney are always a little higher up and will be tender for most people but especially for those of us with PKD. It got me thinking. I started to think about how that side was unusually difficult for me these days and had been for awhile. I could feel pain in my ribs and constantly. Suddenly, I had an awareness. I went into my body and realized, man this hurts. I didn’t even realize I was taking myself out of it until then. No wonder I was feeling mentally and emotionally taxed on top of it all. I realized in that moment that I had totally been off my balance and didn’t know it.
I found out I had to go on blood pressure medication again and that my kidneys had indeed grown. Very significantly. I wasn’t making this up. All of the things I was going through where I kept trying to “blame it on the weather” or “maybe it’s because I did this…” or “I probably accidentally bent” or…”it’s my fault, it’s fine” or “whatever, just keep writing…it doesn’t hurt so much when I write”. I was in pain. I was tired. I was sick.
How long had I been in denial about it with myself and others? Probably for a year. I’d say if I didn’t feel well sometimes but mostly I was tired of saying I didn’t feel well. So I would lie. “Yeah, I’m great!” “Getting a lot of writing done.” “I’ve been so busy writing!” This was code for: “I’m so sick and I feel like dying and it hurts to exist but look…look…I’m ok because I’m doing things. I’m accomplishing. You don’t have to worry. I got this.” I most definitely did not “got this”. It’s getting better now that I’m not so frantically trying to accomplish things every single day but I still don’t really “got this”. In fact, I hate this. But, I have to feel it. I have to allow myself. I have to learn my limits again. I have to stop fighting against my own body and to stop it from doing what it needs to do to heal itself. When I say “heal itself” I don’t mean I’m going to miraculously recover. (I believe that is possible, don’t get me wrong. I’m a big believer in miracles. But I know that’s not up to me to decide.) I mean “letting my body do what it needs to do.” REST. STOP. BE SICK. YOU ARE SICK.
It made me cry not because that sucks. I cry enough over that. I cried because I could feel my body reacting incredibly happily when I said, “I have to stop this. No more Twitter like I used to.” No more stressing. So what if I can’t read a book in a day anymore? So what if I didn’t reply to that email or do every single Twitter prompt that day? So what if I had to tell my friend/family member, “I feel like total shit and can’t deal.” Honesty is something I live for. It was easy to lie on the phone or online. They can’t see me. But believe me, if I were right in front of you you’d know, you’d see. And here’s the thing when I do lie. I will tell you the truth. Because it will eat me up inside. And that’s what it’s been doing to me. I have to tell people how I feel and be honest about it. I have to be better with their responses. I have to know that people just say things because they feel it’s helpful or don’t know what to say. None of it is their fault.
“Feel better!” “Feel better soon!” “I hope you get to feeling better!” I love you all. I do. When you say this I know you mean it. I know you care. Here’s the thing. That phrase kills me. When it’s said to me I think, “Yes! I am! I’m doing it! I’m going to beat this! For you! So you don’t worry! And for me, because I am NOT this disease, right?! I’m totally going to WIN against this! Screw PKD! I got this!” Then I don’t. I don’t feel better. I feel worse most days. I failed you. I failed me. I failed. “Please. Please feel better.” That’s worse. I can see you hurting over my pain. I can feel you pleading with me like I have some kind of control over it. I fail you worse when you say “please”.
Please don’t feel bad if you’ve ever said this. Phrases like “Feel better” are for people with temporary illnesses. Colds. Stomach bugs. Maybe an injury that’s got them off of their feet for awhile. “Feel better” isn’t for chronically ill people. I’m not alone in this. I’ve read hundreds of internet posts on it. Don’t feel guilty for saying it. Just try to understand. Try “I hope you have a good day.” “I’ll pray for you.” “Sending you good vibes.” etc. Those make me feel great and don’t have anything on my part attached to it. I’m not going to feel bad about not being able to magically be cured when you say those to me. I’m going to know you get it. Trust me, it took me FOREVER to get it. I used to say it to my *Spoonie friends too. I just started to realize how it was making me feel and how I’m sure it would make certain people I said it to feel and became more aware of it. I’m never going to jump down your throat if you do say it. Please know that.
So where am I at right now, in this moment? I’m sick. My arms are starting to hurt so I’m going to wrap it up instead of saying “No, I can get like a thousand more poems in before it really gets bad!” 😉
I’m taking it slow. Reading at whatever pace I’m at. Writing when I feel like it. Watching things. Napping. Spending more time away from screens. Hanging out with my husband when he has a spare moment. (He’s been so busy with working overtime but he’ll be back on a normal schedule soon thank God.) Mostly just being in my body though. No more running away from it. I can’t anymore. I’m too tired and my health is going to suffer more if I don’t. It’s not fun in here, but it’s mine and I’m trying to figure out what works best with it and for it. Most days, food is my enemy. I can say it’s a good day if I didn’t wake up vomiting and being nauseous all day. I can say it’s a good day if I didn’t have one single moment of frustration or anxiety about not being able to do something. I can say it’s a good day when I laugh so hard my sides hurt (more). Every day, I can say it’s a good day if I’m honest with myself and others.
Thank you for taking the time to read this. I will hopefully have my new Blog up and running at the end of September. I’m shooting for the 25th so we’ll see what happens. I have a lot of poems to share with you all and I’m working on a flash fiction piece called “The TV People” which I think is really going to be good. I will be a presence on Twitter again soon I just have to not be as big of a presence as I was in the past. I thank you all for being so amazing. For your inspirations, your kind words, your poetic words, and your very existence in my life.
Catch you all in the Fall! ❤ ❤
(*Spoonie- one who is chronically ill…you can check out The Spoon Theory if you want to online. It’s a cool story.)