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. ๐Ÿ™‚

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’ย & 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 asย Vertigo, Psycho,ย & 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. hahaย  ๐Ÿ™‚ )

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 thatย Fallenย 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. ๐Ÿ™‚ Happy Reading & Writing! I’ll see you in a week or so! โค



17 thoughts on “Update: May This Month Be Good

  1. Interesting reading. Striving to have an active life without letting your epilepsy get in the way is admirable. Family support and good friends help but most of all your own attitude and determination to get back up after falling down and living life to the full seems to be your driver in life.
    Well done and keep entertaining us with your carefully crafted words.

    Liked by 1 person

    1. Thank you. I avoid my light & sound triggers as much as possible so my seizures are fewer & fewer. The PKD is what constantly gets in my way. (My kidneys are double the size they are supposed to be due to cysts…getting around with them isn’t so easy anymore.) I manage the best I can though. Some days are easier than others.


  2. So much positive in here, I look forward to the updates, art and poetry to come!

    Have a brilliant week and fill that creative well, girl ๐Ÿ˜‰

    Hope your show is amazing and you get to as many outings as you want. Love all the different ideas and avenues percolating within you, and it brought tears to my eyes reading how much the new doc means to you.

    Wishing you every good thing my lovely, you more than deserve it!
    Catch you soon xxx

    Liked by 2 people

  3. Congratulations for finishing the NaPoWriMo. I enjoyed reading each and every poems you wrote. You totally deserve a break. I hope you have fun with your friend’s visit. Sending best wishes your way. ๐Ÿ™‚

    Liked by 2 people

  4. Did you leave twitter or am I just missing your tweets? Def missing you. You seems so young to have the burden of illness, but I guess that age is not barrier. Really hope you get the better of it. Always wanted to go to Las Vegas. Still on my bucket list.

    Liked by 1 person

    1. Yeah, I got rid of all social media. It’s zapping all of my energy trying to keep up with it & it all drains me now. I have more time to write now & I’m feeling way less stressed. The nerves in my wrists & fingers greatly appreciate not scrolling all day long too. They feel much better. Polycystic Kidney Disease sucks. Epilepsy sucks. Unfortunately, there aren’t cures for either yet, & neither discriminate when it comes to age. I was diagnosed with PKD in my teens & it took until I was 25 for it to start slowing me down. That’s also when my Epilepsy was discovered. I had seizures my whole life & no one knew what they were. I wish I could stop my kidneys from growing but unfortunately, they’re huge & getting the better of /me/ right now. I’ll be 35 next month, but I’m tough. I’ve dealt with it all worsening over the past decade & I’m dealing with new limitations now. I’m still here, fighting, so that’s good. ๐Ÿ˜Š Vegas is a wild technicolor dream down on the Strip. I hope you can experience it someday. I’ll still be here, blogging, & this summer I plan on submitting to more lit mags, so I’ve still got words in me to share. ๐Ÿ˜Š

      Liked by 1 person

      1. I rarely read the other’s work on this blog unless diverted by twitter. Will try and remember to come and check on you. I love your writing and now understand how you gained such maturity – your life experience. I had polycystic ovaries and many operations almost dying several times. I know what it is to be dragged down by illness. I came through it and some other problems to bloom in my later years. To get a fresh start feels wonderful, so I say to you, hang in there, you do not know your future, it can change in a moment. good luck my friend. xxxx

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s