-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 |
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
hey...at 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 |
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
for...one 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 leap...but..you 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
Jas
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
ReplyDeleteJane, 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!
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