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. So...here'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 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 
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 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

Monday, February 16, 2015

Half Truths

A lie told often enough becomes the truth.
Vladimir Lenin

Last week I found myself lying...a lot. Not evil, deceptive life-changing lies, more like small innocent "I'm lying to you because I don't want to have to explain myself to you..it's more of a half truth" kind of lie. We chronically ill patients do this a lot. (Just admit it, you do) And often times, it becomes such a part of what we do, such the norm that we don't even realize it's a lie aka half truth.

Let me explain. Most chronically ill patients, who live with an invisible or rarely visible illness or disability will, at some point or another lie about their symptoms. Lying about how we're feeling is one thing as most of us will say "we're fine" when we're really not. But we often lie about our symptoms in order to avoid crazy looks, side eye, or the "what are you talking about"  conversation where we have to elaborately explain ourselves. And I don't mean lying to health care professionals because we're embarassed about our symptoms, I mean lying to people who don't know about our illness or don't understand our disease/condition (coworkers, family members in denial, distant friends, the health nut friend who believes if you just run a mile and eat some broccoli you'll feel better etc.) 

We lie because it's one less thing we have to emotionally deal with and mentally process. One less exhausting conversation that doesn't need to be had. In the last 7 years, here's a quick list of "lies" I've told family, friends but especially bosses and coworkers when I've had to take yet another sick day that they will undoutedly not understand or feel empathtic towards if they heard the truth. 

1. The lie: "I have food poisoning."/ The truth: "I have really terrible, debilitating acid reflux and GERD that renders me incapable of moving." Why lie? 

Because no one in their right mind would believe that I need a day off from work because of acid reflux. But the truth is, I do. I once ate an (ONE) Oreo cookie and I was burping and regurgitating acid for 12 hrs. My esophogus was on fire, I couldn't find a single comfortable position to lie in, and no amount of Tums or Pepcid or Nexium was working. Patients with scleroderma suffer from excess collagen build up in the esaphogus, this leads to painful heart burn and probelms with digestion. So technically, "food poisoning" is what's happening. Your body is technically feeling poisoned by almost anything you ingest, made really worse by chocolate, acidic foods (pineapples, lemons, oranges, tomatoes, etc), and even a glass of water on an empty stomach. 

Therefore, when I suffer from terrible GERD, (which happens only occasionaly now since I eat barely anything) I simply tell people who don't know my background that I have food poisoning, from what? Bad Chinese, or Taco Hell or Pizza...and it shuts them up quickly, because NO ONE...and I mean NO ONE wants to hear the details of food poisoning. 

2. The lie: "I didn't get much sleep last night."/ The truth: "I haven't slept in 2 weeks due to chronic pain or prednisone and it's finally catching up to me, if I do anything other than stare at a wall there's a possibility I will completely lose my shit and someone will get hurt." Why lie?

Because if you tell people that the reason you look like a zombie is because you haven't slept in 2 or more weeks they will assume that you suffer from depression, watch too much Netflix, are irresponsible, or should probably just take some melatonin or workout more. Normal, healthy people are under the false delusion that not sleeping is a choice. Trust me, it's not. But you can't explain that to normal people, they just don't get. "Oh have you tried going to sleep earlier?" "Have you tried medicine, but you shouldn't cause then you'll get dependent." "I drink a glass of wine and that puts me right to bed, you should try it!" "Work out more, it will help you sleep better." And on and on. Because apprarently the only people who have a legitimate reason for not sleeping are people with babies. 

3. The lie: "It feels like I'm coming down with something."/The truth: "Every muscle in body aches, brushing my teeth requires more effort than it would take you to run a marathon, my joints are swollen, I have chills, and my skin hurts." Why lie?

Because saying all of that requires too much effort. And unless YOUR skin...yes SKIN on your ENTIRE body has ever hurt from something other than a burn, you don't understand what I'm talking about. If I say I'm coming down with something which usually means a flare up, at least all you'll tell me is to rest and drink some OJ (which I can't do anyway because of the acid reflux), but I'll smile and nod and the conversation will be over. Then you'll sanitize your hands and walk away.

4. The lie: "Sorry I can't go out tonight, this weather is miserable."/ The truth: "I'm miserable. This weather is making me miserable. Everything hurts. I'm fatigued. It's too cold or too hot to do anything but sit on this couch like a human vegetable. I feel 80 and I'm only 30. No, I don't have the energy to traipse around town in this miserable weather, feeling miserable." Why lie?

Because if you tell people..at MY age...that the weather is making your joints ache, they give you side eye and say obnioxious things like "You're too young to have arthritis/feel the weather in your bones....!" No. I'm. Not. 

5. The lie: "I'm just tired. I had a really long week."/ The Truth: "I'm EXHAUSTED. Fatigued. From getting out of bed and making it to the couch." Why lie?

Because "fatigue" is not considered a disease, (recently Chronic Fatigue Syndrome has been renamed and officially classified as a disease, but it's still not repected among the average layperson). If people knew what I REALLY did all week and still had the nerve to turn down social events they would just assume I'm a flake, which they probably already do since most people assume that working from home means I get to sleep all day and work in my pajamas, but all it really means is that I have to juggle a 40hr work week around doctor's appointments, labs, prescription refills, being on hold, paying medical bills and etc.  But people's perceptions of what they think I do all day don't bother me anymore. Let them think what they want, I know what I endure every single day. 

6. The lie: "Sorry I didn't call you back. The day got so crazy busy."/The Truth: "I really am sorry I didn't call you back, but my brain fog doesn't allow me to remember what I'm doing while I'm doing it much less who I need to call back, or what I need to or should be doing in the next five minutes." Why lie?

Because admitting that you're an easily distracted 30 year old does not bode well with co workers or your boss. I've lost track of what I'm talking about while I'm saying it at meetings and on conference calls. It used to bother me a lot, now I just shake it off and pretend like I'm the ditsy one of the group. We all laugh about it and let it go. The less I make it an issue, the less it becomes one. I've learned to take copious notes though! 

7. The lie: "I'm just emotional/I'm PMSing." /The Truth: "I am incredibly sad and probably depressed because dealing with chronic illness and pain is mentally and emotionally exhausting but I can't cry like I want to because that only makes my illness worse, so I have to bottle it up inside and cry and mourn in short bursts so that I don't have a stress-induced flare up." Why lie?

Because if you tell people the truth they will insist that you should just "let it all out...it will be good for you." But they don't understand how debilitating a flare up can be...hmm should I just cry it out for a whole day and then be bedridden for a week, or should I just cry quietly in my car or in the shower every now and again for 2 minutes and still be able to function? I'll go with the latter, thanks.

8. And the lie of all lies, the one that gets used most often: "I just don't feel well."/ The Truth: "I am having a terrible, horrible, no good very bad day...every day this week and most days of my life. I'm probably having tachycardia, or shortness of breath, or side pain, or high blood pressure, or low blood pressure, or fatigue, or nauseau, or swelling, or pain, or side effects from one of the many drugs I'm taking or any combination of the above." Why lie?

Because, no one, who doesn't really love you actually wants to hear the truth. (Except your doctor, and that's only if you have one that acutally cares) They don't want to hear that you're not "better" and that you're not going to "get better." That your existence is one of perpetual chronic pain and illness. That some days are just a little less worse than others. That your body never lets you forget how hard it's working just to function. Because minimizing our pain allows us to exude a little bit of normalcy. And, again, because explaining all of your symptoms to someone who doesn't know you well makes you sound like a hypochondriac and how could someone who doesn't have cancer, feel so sick? Impossible! 

This is not to say that we don't share our deepest and darkest moments at all, we do, but only with those we can trust with the information. I don't mind lying, it's saved me a lot of time and internal eye rolling at well intentioned but ignorant comments and suggestions. And I guess the cat's out of the bag now, but truth is sometimes even the little white lies and half truths can be hard to keep up with.

Did I say I had food poisoning or the flu this time?

What did I just say I was doing on FB? Better not post something witty and funny on FB if you've told someone you're having a bad day cause then they won't believe you.

Didn't I just say I was PMSing a week ago...?

You kind of start to feel like Huck Finn and it can be a little exhausting, but I suppose it's a fair trade off for having to constantly explain and justify the unpredictability of your life and illness to those who just don't or won't get it. 

What white lies or half truths have you told about your illness or symptoms?




Friday, February 6, 2015

100th Post!

Wow, here it is..my  100th post on this blog! Yay! Go me!

I suppose I should've reached this milestone sooner, considering I've had this blog for...almost 5 years now...but alas...life is what happens when you're busy making other plans.

Now, I suppose I should write some epic post enlightening and inspiring all of my readers out there. But the truth is, I'm not feeling very inspirational at the moment.

A pseudo heart attack on the side of the freeway will do that to you. (More about that another time..no worries..all is well...apparently I just needed to breathe)

So, instead...I will share with you 100 random things. A few updates and things I'm excited about in the present. Some quirky things about the past. And maybe a look into the future. Here goes, my 100 random things for my 100th post:

1. I am super excited about reading at the Examined Life Conference: Writing, Humanities, Art & Medicine. 
2. I had an amazing time performing and selling books at the Raw Houston Visionary Showcase
Performing @ Raw Houston
3. I am officially an aunt! My brother had a little girl named Adamaris.
4. I am going to be an aunt for the second time this summer! My sister is pregnant and due in August.
My niece Adamaris
5. All of that makes me very happy and very sad because I want to be pregnant too.
6. My parents are both retired now. CONGRATS Mom and Dad!
7. They are moving to the DR in March so my dad can study medicine and find a cure....*crickets*
8. I submitted my book to be reviewed for the Latino Book Awards. Will learn if I am a finalist in March.
9. I still have too much protein in my urine.
10. I now also have anemia...but I can't eat meat because of the protein...catch 22
11. No one notices my missing fingertip unless I point it out to them...but I am still self conscious about it.
12. After I turned 30 I started getting zits...boo
13. I have made so many friends through my sclero journey. They inspire me everyday.
14. Having friends with scleroderma is hard because they die.
15. I once wrote a blog post in reference to Bill Cosby...now I kind of regret it.
16. I am a vegeterian now, which means I'm hungry all the time...still learning what to eat.
17. I have changed the title to my second book at least 4 times already.
18. There are very few female spoken word artists that I like...they just don't have good stage presence...there...I said it.
19. I think Lupus sucks worse than Scleroderma.
20. My favorite color is purple- in case you hadn't noticed.
21. My favorite authors are Toni Morrison and Virginia Woolf
22. I still want a Ph.d. I just don't know it what yet.
23. My favorite TV show is Criminal Minds and House
24. I have a doctor for almost every organ in my body. (Rheumatologist, Nephrologist, Dermatologist, Cardiologist, Endocronologist, Nuerologist, Pulmonologist)
25. My left wrist is currently swollen..making it hard to write this post.
Swollen Wrist..ouch 

26. I want to go on another yoga retreat.
27. I have been meaning to make more friends since 2007...still hasn't really happened...I need to make more friends.
28. Taking care of myself is hard, and stressful, and a lot of work.
29. I've learned that telling myself "it could be worse" doesn't really help.
30. I spent a lot of time in the past being angry.
31. Normal weight women who "diet" get on my nerves. Like seriously?! That's your BIGGEST problem?
32. I believe that people respect cancer, because they fear it. They believe they understand its strength. People don't respect diseases like Lupus and Scleroderma...mainly because they don't understand them...so as long as it's not contaigous, they just assume you can go on about your life.
33. When I don't sleep, my husband doesn't sleep...it's kind of not fair. Sorry Lupe.
My Meds



34. So many people that I know and love say they wish they could take away my pain. But even if they could, the emotional scars would remain. You can't unlive something. The memory remains.
35. My favorite ice cream is pistacio almond....cause it's green.
36. My favorite vitamin is B12--gives you natural energy.
37. I hate prednisone.
38. I have small veins...which means I get poked with needles A LOT.
39. Apparently I owe Memorial Hermann Hospital $14,000....HA!
40. My second book doesn't have an ending yet...that's why I hate working on it.
41. Prayer is talking to God. Meditation is allowing him to talk to you.
42. I was recently interviewed for another blog: Black Girl Latin World ...it was neat!
43. February is Heart Health Awareness month- #GoRedSelfie
44. I miss teaching.
45. I miss acting.
46. I'm trying to learn how to let go...and let God.
47. I hate Mindy.
48. Bubble baths are great.
49. I don't want to want to be a mother anymore...it's too exhausting and disappointing.
50. I wish I had the money to go to Greece.
51. My hair is longer now than it has ever been...yay for hair care!
52. My dog Whiskey keeps me sane most days when I'm home alone with too much time on my hands.
Whiskey...as happy as can be
53. I'm pretty sure I'm addicted to Facebook.
54. I miss wine.
55. I miss chocolate...I eat it now and then...and then soon regret it.
56. I miss buffalo wings...mmm..buffalo wings.
57. It hurts to breathe...that sucks.
58. This is a really long post.
59. There is nothing more humbling than losing the use of your hands. Nothing.
60. I wish there was such thing as a boob sling. Not a bra..a sling...something that lifted my boob off my rib cage without having to touch my rib cage. Any pressure on my ribs hurts...a lot.
61. I realize now, that being a homemaker/housewife is nothing to be ashamed of. It takes a lot of work to make a home for your family...I'm sorry I ever felt any disdain for my own mother for staying at home.
62. I am still considering becoming a speech therapist...what better gift than to give someone the power of speech.
63. I hate slam poetry. Like really HATE. IT. (Not spoken word...that's different..competitive slam poetry is horrible)
64. I would give almost anything to be able to sleep lying flat again.
65. I think Lupe is the cutest, sexiest man ever. I don't deserve him.
66. I have great in-laws. The first time I had to stay in the hospital, my mother in law gave me a sponge bath- now that's love.
67. My best friend is getting married in May- I am so happy for her!
68. I finally have a hammock- I just need to hang it up!
69. For awhile, I dreaded performing because the brain fog made me forget things and I was terrified of forgetting poems I'd known for years.
70. I'm pretty sure I suffer from anxiety.
71. Writing this post is the perfect excuse for not working on my book.
72. I started a Novena today...(a 9 day prayer)...let's see what comes of it..peace of mind at least I hope.
73. I collect quotes..literally..I have a quote book I write them down in.
74. Hospitals don't scare me anymore. I find them interesting and quite comical at times.
75. I cringe when I think about how much I've spent on medical bills in the last 7 years...do you know how many vacations I could've gone on!?
Bubble Tea and Teaching
76. Bubble tea is delicious.
77. I love playing Cranium.
78. I am an introvert.
79. For a long time I didn't like my brother.
80. But sometimes, you have to accept the apology you never got.
81. Doctors are people too. They are not infallible, never forget that.
82. The quality of my life is more important than the quantity.
83. I miss simplicity.
84. I haven't been able to wear my wedding ring on the right finger for 5 years...I've been married for...5 years.
85. I really like cupcakes.
86. I lost my original engagement ring in a kareoke bar two months before my wedding...it was sad...very sad...I still don't like to talk about it.
87. This post is making me sleepy.
88. I love Missy Elliott.
Me and Mom near the beach in DR
89.My favorite band right now is Florence & the Machine
90. I have terrible night vision while driving.
91. I have to constantly remind myself that none of this is my fault.
92. I started this blog during a really stressful time in my life when I couldn't sleep and hated my job.
93. I've yo yoed a lot in the last five years, but I'm glad I've kept up with this.
94. ER doctors are useless.
95. Cellcept is good for everything except indigestion, it makes my GERD really bad
96. I wish I were on a beach somewhere..the water is the only place I feel whole.
97. Yoga saved my life
98. And so did writing.
99. In another life, Lupe and I own a bookstore/comic shop/bakery.
100. All I really want is to have the energy to teach theatre and speech again.