Saturday, April 18, 2015

Poetry & Pleurisy

Hope Is the Thing with Feathers
Pentatonix Concert- So Fun!
-Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity, It asked a crumb of me.

Wow, I have sort of abondoned this blog the past two months. For that I do apologize. It's not for lack of ideas, but simply I am finally back to writing poetry! I came to this blog when it felt like poetry either wasn't enough or was too convoluted in my head to make sense of. Writing in prose just made more sense, and now...writing in poetry does. So that's where I'm at. And hubs and I have been having some awesome adventures! Concerts, festivals, date nights...all those things keep me happy, busy, and sane. :) 

However, I do feel I owe it to whatever few readers I have, to at least come back and give a few updates. Let you know what's going on and what's hopefully to come.

So let's start with poetry.
@The Shout- February
I have been reading at and performing at a number of poetry readings and events these past two months. Everything from inspirational and themed readings with The Shout to reading at college campuses, art gallery openings and more. It's been invigorating and exciting. I'm finally feeling "good" and "normal" at it again. I had lost that part of myself for awhile (about 5 years to be exact), but she's reemerging and it makes me happy. I've even been able to sell a little over 30 books from the readings I've done! How awesome is that?!

On the flip side, however, as with any art form-- the poetry/writing world comes with its set of rejections and disappointments. I took a risk and applied for Houston Poet Laureate- needless to say, and not too surprisingly, I was not chosen as a finalist. And yes, that bummed me out for a couple of days (it didn't help that I was dealing with some awful health issues- but more on that later). I know I am very young, and have a lot of growth to do in my writing career, and there is still plenty of time in my life to apply, so knowing that I am encouraged to just keep trying. I am also very proud of a friend that DID get chosen as a finalist who really deserves it, so I'm keeping her in my prayers.

And on the flip side of THAT, because I was not chosen as a finalist, I used that as fodder to work on
The Shout- March
a collection of poems to be submitted to a book contest. I know it's a long shot, but I'm at least willing to take the risk. Something I wouldn't have done a year ago.'s to hoping.

Also to hoping...on Monday I should find out if I am a Latino Book Award Finalist for my book Island of Dreams. Also a long shot...but least I tried..right? I'll keep you posted on that too.

Lastly, Lupe and I were supposed to go to the Examined Life Writers Conference this weekend to share our stories and poems about living with a chronic illness. Needless to say...we weren't able to go. Financial reasons and my sporadic flare ups made us decide it was not a good time for us to take a trip. Maybe next year. I am glad we submitted a proposal and got accepted so it lets me know that our story wants to be heard and has an audience. I'll take it. :)

I have a few more readings coming up this spring so stay tuned for that!

Now...on to the pleurisy...among other things.

Ugh, this is the not fun part. I have been dealing with a host of issues invovling inflammation of various internal organs: kidneys, lungs, stomach lining. It. Is. Not. Fun.

Kidneys: Lupus Nephritis- means my kidneys are inflammed and are not properly filtering protein. (Proteinuria)- can lead to kidney failure if not treated and becomes worse. I currently have Chronic Kidney Disease Stage I. There are only 4 stages. We are hopeful with the current meds I am on that we can keep it under control- my goal is remission, but that may take stronger drugs that I am just not ready for yet. So..say a prayer. My kidney function is good/stable, but we are worried about the protein..  so we'll see what happens.

Lungs: Pleuritis/pleurisy- Pain. Lots and lots of pain. In my sides. In my back. In my chest. It hurts to breathe. It hurts to lie flat. It hurts to laugh, sneeze, cough, cry, choke, burp, hiccup and sometimes move. There is some fluid around my lungs (yes still, one year and counting) and inflammation around the lung lining. It flares up just like any other part of my body can, so some days I can climb up to three flights of stairs and I'm fine, other days getting out of bed causes extreme shortness of breath and fatigue. There's not much they can do for me they say except give me more steroids, and I don't want that. So I'm learning to manage the pain and reduce things that trigger flares. (Stress, certain foods, too much physical activity, sadness)

Stomach Lining: This is not a definitive diagnosis yet. I see a GI doctor on Monday. However, something is definitely wrong with my stomach as EVERYTHING I eat makes me bloat and gassy. And all that food just sitting in my stomach, pushes up against my already inflamed lungs and causes MORE pain in other areas- my neck, shoulders, upper back, and arms. So basically anything between my chin and belly button is constantly or intermittenly in some kind of pain or discomfort. I have been on a very restricted diet that changes almost daily since one day I can have a meal and feel fine, next day make the same exact meal and feel miserable. I never know what's going to trigger it and the only thing I seem to tolerate is Ensure, yogurt, and Lipton soup with potatoes.

If the stomach issues weren't annoying enough, I have developed an ugly ulcer on the roof of my
Yes, it hurts as bad as it looks :P 
mouth, making eating or drinking ANYTHING just about impossible. It stings, burns, aches etc. I went to an oral surgeon, he made a mold of my mouth and I now have to wear a retainer type thing in my mouth to see if it will heal on it's own. It is impossible to eat with this thing in my mouth..seems like a waste of $400. But, I was willing to give it a go since it was a non-drug way to alleviate the problem. Here's to hoping my body still has the capacity to heal itself.

It's crazy that all of these things are going on in my body as I am on a good and consistent treatment plan, am doing yoga, TRYING to eat better, taking tons of vitamins, destressing with bubble baths and meditation and being as positive as I can as well as keeping myself busy with things I love. Maybe my body is just trying to balance itself out. I don't know, it CAN all be a bit overwhelming at times, but I've been better at calming myself down and realizing that it won't last forever. One day at a time is all I can hope moment at a time actually.

Finally, a few things on the horizon.

I am going to another yoga retreat in May. So excited! It's a silent yoga retreat, which for me will be amazing because it means I won't be forced to socialize! :) But I am also looking forward to spending time near the water and have some actual yoga class time- practicing yoga at home is good but I know I don't push myself as much as I could at home.

Care Package from Emily
Speaking of yoga....I am being encourgaged to take yoga teacher training this fall. I want to. I really really want to. I've played with the idea before, but because of my "limitations" I never thought I'd make much of a good yoga teacher. But my current yoga teacher says that's exactly why I WOULD make a GREAT yoga teacher. It is a dream of mine to offer yoga, writing and empowerment workshops to women suffering with chronic illness and pain...I guess I'm just scared of taking the never know until you try, right? I think if I can make it work financially- to pay for the training- then maybe I will. (And just as I was considering it, my friend Emily (unbeknownst to her) brought me a Yoga Journal Mag and Yogi tea to make me feel better--I'm taking that as a sign from the universe!)

My sister is preggos and due in August! Yay for another niece!! I'm so excited for her. I probably said this before, but I'm still so excited for her.

Speaking of babies...yes we still want one. Of course. There are options we are considering, no, adoption is not one of them, and don't tell me there are children everywhere, I know that. We are not there yet.

Fertility treatment is still on the table and probably the road we need to take. Once we sell the old townhome- close to it- say a prayer- we will try and pursue this route if my body is in a condition to do so.

If my kidneys need more intensive treatment, we are in the process of considering embryo preservation. (No, I don't need your religious beliefs inserted here)- this is what WE might need to do for my health and for our future family. It is not a decision that has been made, but an option we need to consider, and it costs just as much as IVF or adoption so...I don't really see why not.(Again, no religious intervention needed, thanks)- Intensive kidney treatment involves chemotherapy like infusions- may hurt my eggs/ovaries.

Oh, one last thing! I'm making homemade sugar body scrubs. It's a natural way to cleanse and soften skin. If you're interested, let me know! :) They smell and feel yummy. I'm channeling my inability and desire to cook and eat baked goods into skin care products. :)

So there you have it, the good, the bad, the ugly, the new. I wish I could be more enlightening, but that is going into my poetry right now, which I may share more of in the future. I hope this spring renewal season finds you well and that you are able to find the light inside the darkness like I have.

Hugs and Chocolate



  1. Hey Jas, I'm wondering if yr ulcer and bloating might be due to candida infection. I have lots of probs with it because of pred and generally being run down. Try probiotcs and even fluconasol to get rid of it. Check with the gp first tho! Wonderful that yr writing again, I'm submitting two prints to an exhibition this month so fingers crossed for that. Kidneys can get better, I was stage 4 over xmas but back into 3 now, small celebration!! X

    1. Jane, thanks for the tip! Doc said it's the typical bacteria that sclero patients get, put me on antibiotics...already feeling ten times better! I also have a UTI so taking meds for that also. Hoping I can get all these infections cleared up ASAP so I can get on with my life! (well at least with less pain) I have heard that the kidneys can get better, so I'm hoping my self-healing properties will kick in and help, Im trying to eat better, take vitamins, do yoga to detox the kidneys and plenty of water daily as well as natural anti-inflammatory remedies like homemade gingerale and adding tumeric to my smoothies. I figure between all that AND my meds...SOMETHING has to work! Back to acupuncture next if I dont feel better soon. Here's to hoping. Glad your kidneys are responding and doing slightly better. Hugs!