The Las Vegas Strip Trip – Conclusion – Part 3: “Render Unto Caesar’s”


Prologue        Part 1        Part 2




Part 3: “Render Unto Caesar’s” —


Our final night on the Strip started at the Bellagio. I was really excited about having gelato and showing my friend the fountain show. We walked through the Conservatory. It was so beautiful. All of the flowers, fountains, and displays were so peaceful looking. I took a lot of photos. Afterwards, we had some excellent gelato at the Gelato Cafe and I also just had to have an Italian cream soda. They’re so awesome. I could easily become addicted to them again. I worked at a coffee shop once that served them and I drank them all day long. We strolled past a huge chocolate fountain too. It wasn’t too tempting since I was already stuffed with sweetness, but it was cool to look at anyway. I was so cold after we finished our frozen treats. The casinos are extra icy in the warm months it seems, and since I wasn’t walking around, I felt the cool blasts more intensely from my wheelchair. My nerves weren’t liking that very much.


The Conservatory & Botanical Garden @ The Bellagio


The Chocolate Fountain @ Bellagio Patisserie


I’m not sure of the order of events, but we ended up going over to a CVS so I could buy a sweater. Now I have a touristy Las Vegas zip up hoodie to add to my collection. I was also much warmer. 🙂 We got a spot at the guardrail for the Bellagio fountain show and I was very shocked to see that instead of doing a long show (every hour or something) they just do one song and have shows every 15 minutes. I really wanted to hear “Time to Say Goodbye” but we caught a Pavorotti song. The show was still beautiful. I could watch those fountains all day, probably.

We moved on to Paris and I love the ceiling in the shopping area. I noticed a little shop called Le Journal so I went in and bought a journal. (Because, yeah.) It’s cute. It has the Eiffel tower on it. Later on, I got a cool picture of my friend standing underneath the tower replica on the Strip. There’s a restaurant in the middle of it and I guess you can go up to the top. If you’re not me, and not deathly afraid. 🙂 My friend loves sushi so I wanted to treat them to some. We ate at an awesome place called Sekushi. My husband and I aren’t fans of seafood but the restaurant also offered an awesome selection of skewered veggies and meats to choose from. I had steak, chicken, tofu (yes, I eat meat and tofu 🙂 ), asparagus, button mushrooms, and scallions. My husband had an assortment of beef and chicken. (He hates vegetables! So strange!) My friend enjoyed their sushi rolls and also ate octopus which I thought was weird, but they enjoyed it. It looked cool, anyway. 🙂


SekushiSekushi @ Paris, Las Vegas


We hit up some slots but none of us did well. Paris seemed so different from when I visited it last. It wasn’t nearly as exciting to me. I feel like there was less of the pretty ceiling to look at, too. I do want to check out some of the French cuisine there in the future though. The casino connected to Paris is called Bally’s. I stayed there my first visit to Las Vegas (before I lived here). We didn’t spend too much time there and it was pretty lackluster. We decided to head on over to Caesar’s Palace. “Time to go render unto Caesar what is his,” my friend joked. “No,” I laughed. “Caesar’s will render unto me what is mine.” I had to believe that if luck exists, it would fall upon us, so why not on our last night on the Strip?

The walk over to Caesar’s was pretty. There was a nice garden with fountains and benches. Vegas is good for fountains too. Plenty of photo opportunities both inside and outside of the casino. We hit the game floor and just ended up hanging out in this little corner for awhile watching our dollar amounts go up and down. We hung around long enough to have a few drinks before we grew hungry and ran out of gambling money. My friend realized their phone was missing, but thankfully, it was turned in to security and they got it back within 10 minutes of discovering it was lost. That’s some kind of luck right there, eh?


Caesar’s Palace


None of us really knew what we were hungry for, so we wandered along the Strip and noticed the Taco Bell Cantina. Taco Bell is my fast food weakness. I really wanted to check out a Cantina version, so we ate there. The lure of frozen alcohol was tempting but none of us wanted to throw up. 😀 There are rules on the strip for Uber and Lyft so we had to find a place that was appropriate to be picked up at. We ended up in Planet Hollywood and we were walking through the closed mall looking for a bathroom and where we were supposed to go to hail a ride. After what seemed like forever, we found the bathrooms, but lo and behold, they were locked. Great.

We went back inside to the casino. There’s always a bathroom there. They place them at opposite ends with signs that point in the wrong direction to guarantee you walk past that gaming floor quite a few times so you can throw your money away at the tables and slot machines as you search for them, but they’re there. We spent a lot of time in the hallway where the restrooms were looking at a big picture with all kinds of celebrities in it. We were pointing out who we recognized and I swear a new familiar face would appear every time I looked in another section of that picture. We walked around a bit inside Planet Hollywood before we finally arrived to where we were supposed to be to call a Lyft.


More Shots from the Strip


We talked about going out to dinner the following evening and going to play some bingo at Red Rock for my friend’s last night in town, but the next day we were all exhausted. We stayed in, ordered some Thai food, and watched The Shape of Water. What a beautiful film. I love Guillermo del Toro. I just found out he has a horror anthology show that got picked up by Netflix. I’m very excited for that.

The next day my husband and I dropped my friend off at the airport. They said they had a great time and I was sad to see them go. I know we’ll see each other again some day. I’ll be getting down to Florida eventually. Now that my husband has vacation days every year it’ll be a little easier to get to places to visit my friends and family. I’m not the biggest fan of flying, but I do it. It’s worth going through to see my loved ones.

This concludes my little Las Vegas Strip trip experience. It was cool to be a tourist in a city I live in, and even more it was great to see my friend. We have known each other since high school. I value that very much. I like getting out even if it’s nearly inevitable that I will run into some bumps along the way. I had a fantastic time and would love to do it again the next time a friend or family member comes to visit. There’s so much this city has to offer and I’m glad to know there’s a lot more I can handle if I just put my pride away and sit in that dang wheelchair. It’s hard. I can walk, ya know? Even if it’s not very well. But walking great distances isn’t something I’m able to do, and I know it. Lesson re-learned.


Here’s a little snippet from a poem I’m working on about the trip:


‘…gelato at the Bellagio,
and a mediocre fountain show –
in the past, the duration was longer –
more songs – now, it’s all wrong,

Pavarotti instead of Bocelli,
but the floaty sensation
in my waiting belly was the same,

Spouts of thunder, peaceful glow,
magical mist on my face,

I see you leaning
on the faux marble guardrail –
This is now a perfect place…’



Thanks so much for reading! If you haven’t visited Las Vegas at least once in your life, you should. There’s lots to see and avoiding debauchery is possible, if that’s not your thing. 🙂



The Las Vegas Strip Trip – Part 2: “Golden Fries…Literally”

Prologue Part 1

Here are some more photos from New York, New York

Part 2 —

I left off after the Baz show at The Palazzo. We had free drink vouchers that could be used at two different bars so we chose one at The Venetian called The Dorsey. I noticed it when we first entered the casino and remarked that it “looked fancy”. We were asked if we would like to sit in the library and he didn’t have to ask twice! There were little booths with comfy sofas, all kinds of books lining the walls (most of them were admittedly boring), and a giant fake fireplace with a screen above it that was displaying trippy designs and mandalas while music I can’t even describe played. There were familiar songs scattered within this odd yet chill music. It fit the vibe of the place. We ordered some drinks and then of course I got hungry. I don’t drink very often but when I do, all I ever seem to want are French fries. They had curly fries on the menu that came with a tasty sounding sauce and something called “gold leaf”. “Oh! That’s edible gold. It’s going to be sprinkled on the fries,” my husband informed us. Sold. That was enough for me. I couldn’t get over it. When they arrived and there really were golden flecks on the top of the fries, I still went on and on about it. They were delicious. I was happy that I was right about how good the sauce was too. We ordered shots before heading out to take on more casino stuff. Of course, I was still going on about the golden fries. 🙂

Golden French Fries & Cool Library Vibes @ The Dorsey (Venetian)

After we hung around The Venetian for a bit, we headed over to Treasure Island (TI). The rest of this night was pretty much a blur of casino related stuff. We played some slots, got some drinks, took photos, walked around. The usual “visiting a Vegas casino” stuff. I got to show my friend the big pirate ship outside of TI for the Sirens show. I remember seeing it when it was just a pirate show. The next casino was the Mirage, and if my memory serves me correctly we didn’t spend too much time in there. We ended the night at the Flamingo. For whatever reason, it’s the casino I always recognize the most from TV and movies. It felt very “fear & loathing” in there. We were hungry again. I’m pretty sure we were all tipsy. So, we went to the cafe at the Flamingo. The waiter even joked with us about not guaranteeing that the food would be edible, and it was an omen because it really wasn’t very good. My friend told me their pretzel and beer cheese were awful, and my turkey bacon and (not golden) fries weren’t very good either. Oh well. I think it soaked up what it needed to soak up so we could head home.


The Flamingo

I didn’t have another good morning. I ended up having another seizure and had bad nerve pain again. I decided that any more places we went to with lots of long-distance walking, I would have to use my wheelchair. I couldn’t keep doing that to my body. Thankfully, by nightfall, I felt pretty good and we decided to stay local and go to Red Rock Casino. I did pretty good on the slots, and we ate at the cafe. We didn’t even head out there until like 3 am, so when we left the sun was up. We took photos around the fountain, and that’s when the vacation haze hit for me. I was like “Whoa, this is surreal. I’m actually out doing things, and I’m making it aside from a few setbacks.” I was extremely happy.


The Pirate Ship @ Treasure Island

I took the next day off so I could rest. I had a good sleep after Red Rock. No seizures, same pains as always, and my mood was feeling better. I was getting super frustrated with my body and started lashing out at everyone the day before, and I absolutely hate when I do that. My husband took my friend down to Fremont Street and they hit up all kinds of casinos down there, and saw a little live music. They said the laser show on the street was different than from what I remember and they said it was kind of boring, but they enjoyed themselves. They said it was fun to walk around. I asked them if they were up for visiting another local casino called the Suncoast. Everyone was down, but then my friend got super tired. They said they didn’t mind staying to sleep so my husband and I went out for a little bit. We didn’t do very well at all slot-wise and the place was pretty dead. I wanted to get out while I felt it though. Rarely do we get the opportunity to just go all over and have a good time. I wanted to milk my vacation for all it was worth.

I hope you enjoyed Part 2! Stay tuned for the conclusion!

** Correction: The Cafe with the so-so food was at the Mirage & not the Flamingo.

The Las Vegas Strip Trip – Part 1: “That’s Amore!”


KnightsLiberty1The Las Vegas Strip – Outside New York, New York & MGM casinos


I need to hurry up & write about my vacation because I’m already really absorbed in another project that just won’t wait. I wrote over 2,000 words last night & I’m glad something new is fresh in my mind & flowing. I don’t want to say too much about it because it seems whenever I do that, whatever it is I’m working on ends up in the “Unfinished” pile & I’m trying to avoid that for this. 🙂 So, on to a recap of my adventures!:


After we picked up my friend from the airport, we came back to the apartment & just caught up & ate a wonderful meal of meatballs prepared by my husband. He loves cooking. I don’t. It works out pretty amazingly, & he’s also a very good cook so that’s even more amazing. We talked about places we should visit. We talked about all of our predetermined plans we had for that Friday. I was feeling good & very excited, but slightly anxious over how much I knew I’d be pushing myself. I wanted to though. I wanted this trip to be a blast.

The following evening, we took on the Strip. We started at the Luxor. It’s the Egypt themed hotel/casino. It looks like a pyramid & I can see it’s light from my neighborhood. It’s a huge spotlight aimed at the sky that can be seen for miles around. We had plans to eat at Johnny Rockets & I was a little disappointed to find out it was only a Food Court location, so we didn’t get the experience of the whole staff singing & dancing along to a “jukebox” playing 50s music. (This was compensated by a giant jumbotron in the center of the Food Court, which suddenly switched to a video of a Johnny Rockets staff somewhere in the world performing a song for whichever restaurant they were really at. It’s a Johnny Rockets thing. I was excited about it. I took what I got.) We were tripping out sitting in the Food Court, looking up at the hotel room floors. It was quite the optical illusion being pyramid shaped. People looked like they were dangling above us, & that at any moment they could fall. I have a thing with heights & the whole thing was making me dizzy, but I still thought it would be cool to stay there & see how things looked from above sometime.

Our next stop was the Excalibur. It looks like a giant medieval castle on the outside, but not as exciting vibes on the inside. Some lady cornered us & was trying to sell us package deals to wherever & I wasn’t having it, I just wanted to move on. So, an awkward moment of lost patience ensued. At this point, I was starting to feel all the walking, & it was still early in our night, so I really only had one thing in mind: have a good time.


HoudiniShop1Houdini’s Magic Shop @ New York, New York – Las Vegas


Our last stop of the night was New York, New York. The Statue of Liberty replica outside of it had a Las Vegas Golden Knights jersey on, & I started to think about Las Vegas as a “hockey town”. I shook my head in disbelief & took a ton of pictures. (I go on about this a lot, but seriously, this is their first year. They’re in the Playoffs. This is seriously unheard of.) I remember doing pretty well slot machine-wise at New York, New York. My husband tells me I actually won a bit that night. We had giant, greasy slices of pizza there. We also visited a Houdini’s Magic Shop. There was a Zoltar machine there so I had to get a fortune, of course. Back at home, I had a rough time with my nerves & had a seizure, but I recovered quickly & upon waking, I felt ready to tackle another night.


We had show tickets the following night so I definitely had to go, even if I didn’t feel like it, but thankfully, I totally felt like it. My feet were a little sore but I think I was fueled by excitement because I was more than ready to get going. Of all the casinos I’ve been to, I love the Venetian the most. My first visit to the Strip (14 years ago!) I remember being obsessed with Paris. This time around, I can’t stop thinking about the Venetian & how I want to go visit it again. The Grand Canal Shoppes was a nice little walk, & the giant “Love” display is there. We took some photos & just took in the general splendor before heading to Casanova for dinner. The Shoppes are surrounded by the Canal & we saw the gondolas & I was too excited thinking about how I was finally going to be able to ride in one. I loved the antipasto platter we ordered as an appetizer at Casanova, & for my meal, I had wild mushroom ravioli which was amazing. I loved the vibe in that restaurant. The lighting fixtures especially. Las Vegas is good for my fascination with fancy (& often faux) light fixtures. Every ten minutes I was thinking, “Ooooh, that would be nice in a dining room”, & other things like that. My husband & friend both enjoyed their meals as well. We were now on our way to catch a Gondola ride before the show started.


Casanova Restaurant @ The Venetian – Las Vegas (Please forgive my blurry photos, I lack a steady hand, but I do my best!)


I loved our Gondolier. She was amazing. Her voice was so beautiful that when she sang “Bella Notte” (it was in Lady & the Tramp) I teared up. It couldn’t be helped. She told me it was fine. “Feelings are better to be let out than kept in!” she bellowed in what was probably a practiced Italian accent. (They have to go to school for this.) She also made some jokes that I thought were pretty funny. She was just a wonderful presence to be in. She sang “That’s Amore” & “Funiculi, Funicula” as well & those were fun & upbeat. It was cute when some tourists on a bridge waved to us. I waved back, of course. There was also a little bridge we passed under & she told my husband & I we would stay together forever if we kissed under it, so of course we did. 🙂 I visited the gondola shop afterwards & got a magnet & a little figurine of a gondolier & gondola to have mementos of the experience.


GondolierMy Gondolier Figurine


After our little boat ride, we headed over to the Palazzo (another casino connected to the Venetian) Theater to see Baz. We were happy to see that pretty much everyone was in VIP seating, including us. Even the stage had tables on it, & spectators were sitting there! There were runways from the stage all around where we were sitting. It appeared that there would be actors right in front of us based on the layout, & I hoped we could take pictures. I soon found out we could, “take as much video & photos as you want, just make sure you hashtag us!” was in the pre-show speech, also informing us that we had to be careful because actors & actresses were going to be running all over the place, so make sure we keep them safe, etc. The show is a mash up musical of songs from three Baz Luhrmann movies, “William Shakespeare’s Romeo & Juliet”, “Moulin Rouge”, & “The Great Gatsby”. It’s amazing to see the parallels to each story having it laid out for you like that. There was an awesome “Tango de la Roxanne” from Moulin Rouge & Amy Winehouse’s “Back to Black” from The Great Gatsby soundtrack mash-up that I was super impressed by.


Baz @ The Palazzo


The actresses & actors had impressive vocal & dance skills & were literally running around everywhere. There were also scenes/lines from the movies (based on literary works), throughout the show being delivered, & everyone was good in that department too. Mercutio’s death scene (as always) made me cry. I captured a lot on video & couldn’t stop filming during the “Like a Virgin” scene because it was just fantastic. I thought the guy who played Romeo was adorable & he was directly in front of us quite a few times. I have many blurry photos of trying to catch performers running by. They’re pretty funny to me. I avoided the couple instances of strobe lights in the show just fine, & also was able to slow my heart during the gun violence scenes. This never used to affect me, & it does now, & I really don’t like it, but that’s another blog post in itself. It was great to sing along to the show & I was laughing out loud at some parts. The man who played Harold Zidler was the best. He was so hilarious. Juliet, Satine, & Daisy had amazing voices. The set, the costumes, everything about this show was perfect. If anyone asks me what’s a good show in Las Vegas to see (I haven’t seen that many, but still) I will definitely tell them to go see Baz. I had to get a souvenir afterward, so I got a cool Baz flask. I am still very sad that there is no show soundtrack that exists, but I did my best to compensate for that by making a playlist of all the songs in the show in some form or another, & I’ve been listening to it on repeat since that night. 🙂


ChristianandSatineThis scene with Christian & Satine from Moulin Rouge was right in front of us — This is the best photo I captured from the show!


I’m not sure how many parts I’m going to break this trip up into to share here, but that’s enough for right now. I hope you enjoyed Part 1! This is only the first part of this night at the Venetian. The night was still feeling young for us after the show, & we had free drink vouchers. Spoiler alert: We didn’t end the night at the Venetian. 🙂 Stay tuned!




Update: May This Month Be Good


maypoleMaypole – Artist Unknown


Wow! It’s May already! April was a tough month, but I was distracted from my daily struggles by #NaPoWriMo & it always feels good to write every day. I try to write a little every day anyway, but to have 30 concrete poems in 30 days is an accomplishment I look back on every time I participate & wonder how in the world I did it. I definitely need a week off. 🙂

My dear friend is visiting for a week. He flies in on Wednesday night & it’s going to be so great to see him. My husband has made a tentative itinerary of places we should definitely take him to whether I am able to participate that day or not. I never know how I’m going to feel every moment of every day, but we do live in a 24 hour city so that won’t matter. My “sleep schedule” is basically, “whenever my body needs to sleep.” I try not to worry about it too much & I always get enough. Friday we have show tickets so I definitely need to be able to pull through that. I can only hope it will be a good day & even if I’m not feeling well, there are ways to manage things. If I have to rely on my wheelchair to get around, so be it. I may not like it, but I don’t want my illnesses to get in the way of having fun. There’s a couple things I can’t participate in because of the events being too flashy for my Epilepsy, but I don’t mind. I will take that time to rest up for the next adventure. I’m so excited. It’s going to be so much fun.

On the publishing front, I have a prose piece coming out in Issue V of Half Mystic. This issue is called ‘Cadenza’ & can be pre-ordered here. Half Mystic is home to many talented writers & artists & I’m honored to be included in the issue. I’m so excited to read it. After my vacation, I plan on focusing on submissions. Everything I write that I feel is “submittable” will be sent to hopefully find a home somewhere. I took some time off from submitting to try & get adjusted to my new limitations, & I think I’ve found a better balance now that I’ve given up social media. I lack energy & am in constant pain so I had to cut some things out & change the way I was doing some things to be able to enjoy my days again & feel a little more productive & happier than I was feeling. It’s been quite the battle, but I feel I’m coming out on top.

I read a lot this past month. Reading books, reading blog posts of others’, & writing my daily poems consumed the bulk of my time awake. I also watched a lot of SVU & a few movies. There was a little Alfred Hitchcock marathon on so I’ve been watching some of his films that I hadn’t seen or heard of & some of my favorites of his such as Vertigo, Psycho, & The Birds. I’ve also been watching the NHL Playoffs & I CANNOT BELIEVE the new team (from HERE, LAS VEGAS of all places) is a good contender for the Stanley Cup. I’m a lifelong Detroit Red Wings fan, but I am rooting for the local Golden Knights, because hey, why not. (Sometimes, I swear the Cup follows me. I need to get back home so Detroit can start winning it again. haha  🙂 )

Here are the books I’ve read this past month. I definitely recommend all of them. I wanted to read some books that I’ve seen the movie version of billions of time, so I read Fried Green Tomatoes & The Virgin Suicides. I plan on reading the rest of that Fallen series as well since I enjoyed book one so much. I haven’t seen ‘Love, Simon‘ but I definitely want to. The book was so good.

Fallen // Lauren Kate
Her Body & Other Parties // Carmen Maria Machado
Because We Are Bad: OCD & a Girl Lost in Thought // Lily Bailey
The Gin Closet // Leslie Jamison
Northanger Abbey // Jane Austen
Simon vs. The Homo Sapiens Agenda // Becky Albertalli
Fried Green Tomatoes at the Whistle Stop Cafe // Fannie Flagg
The Virgin Suicides // Jeffrey Eugenides

I’ve also been reading passages of the Bible, (I’m finally going to read the whole thing & have been working on it this year), & The Philokalia. I’ve been reading Monastic Wisdom: Letters of Elder Joseph the Hesychast, & Emily Dickinson’s Complete Works if I don’t have my current read handy or just want something to read quickly for inspiration or meditation purposes. The book I’m on now is ‘Torment Saint‘ by William Todd Schultz, which is about the life of Elliott Smith. Interestingly enough, I checked this book out at the library on a whim before I read ‘Simon‘ & was surprised to find that Elliott Smith & his music are mentioned throughout the book. I love synchronicities like that. I’ve been listening to a lot of Elliott Smith’s music again too. It may be sad, but it suits me right now.


TormentSaintTorment Saint: The Life of Elliott Smith by William Todd Schultz- My Current Read


Since I’m not on social media, I’ll be posting more personal updates to this blog. I’ve decided I want to continue to do my photo/poetry edits as I was starting to do on Instagram before I left. They’re fun & I have so much micropoetry from doing Twitter prompts for two years so I’m going to share them here. I also keep visualizing collage paintings so I want to work on some art too. It’s been way too long & I’ve never had inspiration for art pieces become so restless before. I discovered that there is even something called “visual poetry” & I have a few ideas for that as well. I think it’s cool to combine art & poetry. It will be fun.


SaveYourLifeCollageA collage by me


Of course, I make all of these plans & attempt to get to it all, but I’m never able to forget that I am ill. My body reminds me. My brain reminds me sometimes. I try not to be reminded, but eh, what can I do? I just have to accept & do what I’m able to do. I’m happy I was able to mail out some letters to my friends this month too. I love letter writing. I love writing, period.

Hopefully, after my one doctor’s appointment in May & three appointments (tests, follow ups) in June I will be done with waiting rooms for awhile. I’m hoping nothing else pops up & that it’s all just “progression of the illness” which is what my new nephrologist suspects. He’s so on my level & I’m so glad to have found him. I kept trying to tell so many other doctors, “I think this is just my disease” but they all just wanted it to be something else or something, I don’t know. There’s still a lot about PKD that is unknown & if you’ve never heard of it, you’re not going to believe that so much could go wrong from just one illness. Those of us who live with it constantly do know, & it’s wonderful to be listened to & understood by my new doc. He’s really fantastic, & I seriously can’t get over how happy I am to be in his care now. Just having a good medical professional on your side can make things so much easier.

Well, I’m officially starting my vacation now. Thanks so much for all the love, support, & encouragement, everyone! I appreciate you taking the time to read my writing & for commenting such kind words. It really means the world to me. 🙂 Happy Reading & Writing! I’ll see you in a week or so! ❤



Confession Time: I’ve Been Lying to You…And I’m Sorry

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.)

Open Eyes, Open Ears, Open Mind, Open Heart

What a week it’s been! I’m still struggling with chronic illness crap but keeping my mind busy. I’m sloooowly making my way through “House of Leaves” still. This book is insane. It successfully creeped me out so badly I wanted to chuck it across the room. (It’s borrowed from the library though so I didn’t.) Excellent read and I wish I had the energy to just finish it up but each chapter I finish takes so much processing anyway so even if I was feeling my best, I’d probably still have to take it just as slowly.

There aren’t enough hours in the day to keep up with all of the changes happening in the world. Today felt so much lighter though. There were some silver linings in the dark clouds of dread. I know not to believe that all of the madness will just suddenly stop but it’s amazing to see people stand up for what is right. I didn’t spend too long feeling hopeless and afraid because I witnessed all that is good in humanity in just a few days. I’m still witnessing it. Others who rise up, unafraid, inspire me to do the same even if it’s just on a small, personal level. Just because I’m small (and currently pretty gimpy) doesn’t mean I can’t do small things to help out the good causes. I don’t feel helpless anymore when I feel I can use my voice to be heard. I feel like when I am an ear for others, that helps too. I keep my eyes open. I can watch and read the news without feeling upset, afraid or angry. I’m not afraid to reach out to my indigenous community anymore. I’m not afraid to ask questions or to correct someone who may be misinformed on something. I’m not keeping silent anymore out of fear that my very existence will be the cause of offending someone. These are good things.

I keep an open mind when I listen. I feel where the other person comes from when they speak. I can respect passionate rants that aren’t harmful to others and that aren’t messages of hate and intolerance. I have courage to tune out, walk away, turn off or block out those who do spread hurtful messages. I don’t let it get under my skin anymore.

The love I feel is stronger than all of the hate in the world. The love I see and read about that others have and live their lives based upon is stronger than that. It brings me joy to see crowds of people gathered to stand up against injustice.

I know to unplug from time to time. Everyone should. We’re still allowed to laugh, enjoy ourselves, spend time not talking about it all for a bit, eat good food, go outside, etc. All strong warriors need breaks. All humans need breaks. It doesn’t mean we aren’t in the midst of a battle and that we’re losing focus from it. It means we nurture our souls and our spirits by allowing ourselves to experience some joy. Feeling good while you’re doing good helps the good. Right? So take a rest. Watch a funny film. Call or visit an old friend and laugh it up about the good ole days. Dance. Make some art. Sing. Keep your heart open. Feel love in all you do.

Sometimes I get so lost in my notebooks that my coffee has grown cold and hours pass and I’ll take a break and wonder what the heck I did and how the heck I did it. But that’s alright. Through all of this excruciating pain I’m dealing with, it’s nice to see my little accomplishments build up because too many times I struggle with feeling like a worthless burden on everyone I know and all of society or something. (It’s ridiculous to feel this way. I totally know. 🙂 ) Even if my only success of the week is a lot of pretty decent micropoems, it still makes me happy. 🙂

Have a good week everyone!

#MicropoetryMonday + Update! – January 16 – 22, 2017

Photo Courtesy of Motto – Women’s March on Washington

Hi everyone! I wanted to give a little update along with the micropoems for this week.

It’s been rainy here in Vegas which is totally awesome for our whole drought situation. I’m loving listening to it because it hardly ever rains all day like this. Barometric pressure changes that accompany storms can sometimes make my brain and body a little (or a lot) wonky, however. This has been the case this past week.

I had a few seizures that put me down for the count for a bit. I also had a bad nerve pain flare up and my sciatic nerve is especially suffering. It has its moments where I can find just the right position and not feel any pain but for the most part, I’m bound to my reclining chair. I can hardly walk or do much of anything. I’ve been trying to read little bits, write little poems where I can and I’ve started to binge watch The Magicians again before Season 2 starts on Wednesday. My husband, Jackson, has been a huge help to me and I’m so thankful for him. I can’t ever stop talking about how much I love and appreciate that wonderful man.

So, things I wanted to work on last week got pushed back. I still have time for another #BattleTheBeast entry and other than that no more deadlines as of now. I had to cancel some plans this past weekend too but it’s alright. When I’m feeling better, I can get out and do something fun. I did enjoy family dinner at the Lodge on Friday night though before the worst of the pains caught up to me.

It’s been a hard week anyway considering everything we’re all going through. Transition is the key word and it’s not just on a global level. I feel like many people are making personal transitions right now too. There’s a lot I want to write about but I’ll save it. I’ll hide it away in my poetry as per usual. My notebooks have been filling up since the last report of violence against water protectors at Standing Rock, the Inauguration protests, and the Women’s March. Writing is the only way I feel my voice matters, honestly. Even though I don’t feel it matters very much to anyone other than me. It’s enough that I purge it out.

I do have some good news to share. I have three poems in the March issue of Font Magazine (on sale February 15th) and this is the first time I’ve had poems published so I’m very excited about it. I will share links once they are available. I feel awesome that my hard work and determination to pursue publication again has paid off. I’m excited to keep submitting.

I hope everyone has a lovely week! Keep fighting the good fight!

Photo Courtesy of UK Pop Art

We ask not, want not
but life doles out 
its lemons as usual
Turn them into 
sugar sweet nectar
Throw them at people
lunch notes from mother
love & encouragement
in scrawled crayon
too young to understand
i’m older now
i miss being told
“you can”
I wanted hair
like the TV news ladies
as a child
because they were like
the auras around 
the pictures
of the saints
I wanted 
so badly
to be good
I’m weightless
& heavy hearted
A conundrum,
I know
So is this business
you started 
The world’s watching,
True colors
always show
Old songs
lead the dance
in a trance
Greet new dawn,
new light
in your hands
The past is gone,
so here & now
take your stance
Every afternoon I wake up
hoping against hope
that I won’t have another night
afraid to close my eyes
Can’t look away
Can’t un-hear cries
Soul brother
he’s strumming a tune
on the windowsill
I’m down below
to get his attention
He’s too into the song
So I croon along
He digs the sound
Says he’ll be right down
But I’m on my way up already
We meet halfway
He starts to play
We sing a morning medley
A picture worth a thousand pains
A thousand laugh lines
on a hackneyed face
A face indifferent
with no name
Fragile weathered frame
Time’s run out
‘Tis the hour
Debt is due
Shortchanged deals
turn sour
Broken agreements ignite
Guilt burns the streets tonight
Nerve pain shooting down my spine
like scissors skipping
in jagged lines
Sawed in half
Brittle bones shake
Explosions every step I take
“Sound of Silence”
Never dreamed the sound of silence
would be so deafening, terrifying
When it’s just me, echoing in my head
I hear darkness ringing
Of all the magical, fantastical worlds,
Fantasia is my favorite
My first escape
as a little girl
& to this day
I still savor it 
They divvied up the faithless,
measured in self-worth
Scattered them like stardust
all over the Earth
Once diamonds,
now dirt
Change is coming 
The winds tell me so
How much? How little?
Only time knows
Whose pockets will be emptied?
Whose will overflow?
“Behind My Mask”
What’s behind my mask?
Failing organs
Nerve trauma
Oh, not that face
Not the pity look
You’re right
You shouldn’t have asked
Puddle jumping–
Silver fish in sunflower slickers
Shiny apple galoshes 
making ripples
Hiding behind dripping pigtails
all the way home

My mind- in tune bloom;
Laid open, a spring flower
Survives winter’s crush
Fingers tiptoeing,
balancing on delicate
strands of tightrope hair
“Pure Magic”
I ached to see the
sky the way my old man did:
“It’s pure magic, man”
VSS: (very short stories)

Movie Still from ‘H.’

He knew he was alive.
But he couldn’t remember when.
“From H.”
The event occurred. No one remembered. No one woke up.
She smiles for the world,
but cries behind closed doors.