Saturday, November 7, 2015


“May your mind be infused with 'one' thought(concentration of mind)! May every action of yours be embellished by 'one' thought! May your resolution be 'one'. You, who are acting to the contrary, your disposition shall have opposite orientation.”- Athra Veda

I hope to keep it short today. I want to give you all on update on all health related things, so here goes.
I had both rounds of Rituxan infusions and everything went GREAT! I couldn't have asked for a better outcome. Although I still don't know if it's officially helped or started to reduce the kidney inflammation, I can say that I feel like a completely new person. I have had more energy in the last few weeks than I've had in years. The pains in my side from the lung inflmmatio (pleuritis) are minimal and only mostly at night or after a large meal, but still a lot LESS than what it has been. I don't really have any fatigue unless I over exhaust myself and my muscles and joints feel really strong. I'm also eating better/more and most nights I can sleep alright.

I'm still having some issues with my hands and fingers. The ulcers don't want to heal and my fingertips just feel really sensitive lately, even typing this hurts. I see my doc on Thursday of next week and will definitely ask him about it. But overall, as you can see I finally feel like I'm getting some much needed relief!

The Rituxan infusions were a piece of cake for me. I was able to bring books, my laptop, my phone, a few magazines and even a snack. The first infusion took about 4.5 hrs since they had to be sure I wasn't going to have an allergic reaction. And thankfully, I didn't. The worst part about it all was the fact that nurse couldn't find a vein so she had to stick me twice, this as you know, is not unusal for me. After about 10 minutes I actually just fell asleep, soundly! As you can see from the pic, those chairs are REALLY comfortable, so I just reclined back, wrapped myself in a blanket and took a two hour nap! I also think it was the Benadryl kicking in and the fact that I didn't sleep well the night before due to being anxious about it all. (They make you take Benadryl and a Tylenol before the procedure to reduce the risk of an allergic reaction and pain.) 

My mom and Lupe were there and kept me company. They had a TV in the room and one other patient. It was actually quite relaxing.

The second infusion was only 3hrs because they could give me the medicine more quickly since I responded so well the first time. This round went much the same. I took a bunch of stuff to do, and barely did any of it cause I fell asleep almost immediately. I did experience a few hot flashes after both treatments on the ride home but that was about as bad as it got.

For those of you that don't know, here is a little info on what Rituxan is: (I had some trouble getting insurance to approve it because it's not "FDA approved" for Lupus nephritis, but of course my amazing Rheumy worked his magic and made it happen- this requires a lot of paperwork on his part and a few phone calls on my end)

What is Rituxan? (

Rituxan (rituximab) is a cancer medication that interferes with the growth and spread of cancer cells in the body.

Rituxan is used to treat non-Hodgkin's lymphoma or chronic lymphocytic leukemia. It is also used in combination with another drug called methotrexate to treat symptoms of adult rheumatoid arthritis.

Rituxan is also used in combination with steroid medicines to treat certain rare disorders that cause inflammation of blood vessels and other tissues in the body.

Rituxan may also be used for purposes not listed in this medication guide.


So, as you can see, Lupus patients DO and CAN receive "chemotherapy." Everyone's eyes widen when I tell them this and they assume I'm going to lose all my hair and that I must be dying. Not. True. Rituxan along with many other drugs simply suppress the immune system, and since my immune system is attacking itself and over "excited" that's what I need to do and that's how these types of treatment help.

I am glad that it seems to be working and helping with my overall health. Next week I go in to see the doc, get labs drawn and find out what the blood work says. Hopefully it reflects how I feel! - All good in the hood! lol

I know that being in a good place emotionally and mentally helps with overall physical health, but I do feel like the reverse is also true. I feel better emotionally because I feel better physically. I don't think it's JUST the other way around as some would have you believe.

Regardless, although I am still leery that all of this energy and good health is only temporary, I will embrace it and enjoy it for as long as it chooses to last. Afterall, I've had some pretty shitty years and really deserve a break!

(Stay tuned for next week's post on Writing and Getting Wiser)

Monday, October 26, 2015

The Write to Heal

It is no secret that I recently had the most amazing weekend of my life alongside 5 other Afro-Latinas at a writer's retreat in Galveston. I have been living off the high from the weekend for days. If you follow me on FB or Twitter or read last week's blog, you know how energized and empowered that weekend made me feel. Never, and I mean never, have I felt so connected to a group of people I rarely knew. Never, and I mean never have I finally felt like I belonged somewhere. Never, and I mean never have I ever felt so understood. For the first time in 7 years, being sick wasn't what defined me. And that made it feel like I could finally breathe. 

It's one thing to try and build a community of support in the virtual world. And it's actually quite easy to do so. But to actually come together and share our experiences, our stories our deepest fears and desires, and our written work...nothing..nothing is more powerful than that.
I won't go into great detail about all that we did or said or shared. Some things are meant to be kept between sisters (yes, that's what they are to me now, sisters). But I will share a few things that I walked away with from that well as a few pics of the best moments.
The Women

1. Hair. We all have issues with our hair. Whether we're Dominican, Cuban or Afro-Mejicana, our hair is something we all have to learn how to love if we are ever to be truly happy with ourselves. It can define us and destroy us if we let it. There is a love/hate relationship many of us have with our hair from the moment we are young girls until the day we die. I've known for years that I am not alone in this struggle (a struggle I have finally overcome since I really do LOVE my hair finally) but it's always nice to hear others empathize and relate to your plight.

2. Identity. All of us identify as Afro-Latina,
but we are all at different points in our journeys. Some have fully embraced their "African" roots, while others don't even have proof they are of African descent but something within tells them so. Some of us still feel more "Latina" than African (me), and have a hard time embracing and accepting our blackness (in the African-American sense of things) if only because we've been told all our lives one of two or both things 1)Blackness is wrong, evil, dirty or "other" 2) You are not "black enough" if I needed a card to prove it or something, because I "sound too white," have "good" hair, and speak Spanish...hazme el favor.

Cafe Bustelo in da HOUSE!
What I came to understand is that most, if not all Afro-Latinas are stuck in the beautiful but often isolating world of grey when it comes to identity. The light-skinned Latinos don't like to acknowledge us (especially in the media, but even in our own countries), and black folks in America are quick to say we don't understand their struggles. It's a tricky space to live in, and we often feel like we have to pick a side...but the strength with which some of these women claimed their identity left me feeling more empowered and willing to do so myself. I am who and what I say I am, and no one can say any different..and I don't have to prove it to anyone either.

The last and probably most profound piece of identity that I came to that weekend (Thanks to Icess), was the "where I'm from piece." Something that I've struggled with for decades. As a military brat I thought I could never answer that question simply. But I think I am one step closer to a true answer. Truth be told, I am from...the South. Yep. There, I said it. Most of my experiences in life have been with a southerner's point of view. All the states I've lived in have been southern states, and I've spent so much time in TX already, I may as well say I'm from here.

The Retreat House!
I came to the realization that I hesitated to admit to my southerness because of all that it implied. Slavery. Discrimination. Racism. Hate. Violence. Women as property. Not that those things don't exist in the north, but the south has such a dense and torrid history. I didn't want to carry the baggage of what it meant to"be from the south." Truth be told though, after some reflection and writing by the water on the last day at the retreat, I'm kind of proud to be from the south now. Yes, it has a turbulent history and it hasn't been kind to people like me, but Southern hospitality is a real thing and I have been shown so much love from so many people here in the south, that I can't simply ignore that.

I feel connected to the landscape, the architecture, the arts and culture, the food, the music (even the Rodeo) and the people. The south is home and I think I'm finally ok with that.

3. Anger. We are all angry. And that's ok. Though we resist and hate the stereotype of the "mad angry black woman" we understand and accept that our anger is justified and necessary. We have every right to be pissed. About A LOT. Low wages. Inequality- everywhere. The way were are treated like "exotic" objects to be conquered and sexualized. Street, work, and overall life harassment from people who feel entitled to us and our bodies. All of that and MORE. We are angry, and we are forced at times to carry that anger with grace and humility when all we really want to do in the words of Ntozake Shange "is scream, and holler, and break things and tell you all your truths to your face and [not] be sorry for none of it." But that isn't alwyas possible. So what do WE as Afro-Latina writers do instead, when we can't fully express our rage? We write. And that is how we learn to heal. We did a lot of healing that weekend.

4. Anxiety, Sadness, Fear. We are all vulnerable and feel just as deeply as anyone else. Just because we are angry doesn't mean we are not afraid. It doesn't mean we are not deeply sad or anxious. All of those emotions exist within us simultaneous and that alone is often maddening. We are afraid of how we will be treated and received by others. We are anxious about our next step in life because we don't know where our feet will land at times. We are saddened by the fact that so little has changed to improve the lives of our gente both in the US and in our countries of origin. We carry all of this in our hearts and on our backs and if someone were to ask us why, why do you carry all of this around? Like Anne Carson, I believe we would simply have to reply:

"Where would you want me to put it down?"

The Beach...
5. Peace & Joy. Even amidst all the chaos and noise in our lives we all were able to find a little peace and a little joy that weekend that I believe all of us have carried with us moving forward.

6. Family. We became a family that weekend. We ate together. Laughed together. Cried (well at least I did) together. Shared stories together. We even went shopping! It was easy to be around these women and we have continued our conversations and our community online. Some of us our poets and memoirists, while others are playwrights and fiction writers. The genres didn't matter, our love and passion for the writing is what brought us together and will keep us together.

We are looking forward to coming together again soon, and you can join us! Our lovely organizer Icess Fernandez has coordinated a Live Stream Reading of our latest work coming up November 18th, 7pmCST/8pmET. You have to register for the online event to get the link. You will hear written selections from all 6 ladies (including me) that attended the retreat. You don't want to miss this!

Monday, October 19, 2015

Thicker Than Water

“You must remember, family is often born of blood, but it doesn't depend on blood. Nor is it exclusive of friendship. Family members can be your best friends, you know. And best friends, whether or not they are related to you, can be your family.”
Trenton Lee Stewart, The Mysterious Benedict Society

My family (Lupe) and I celebrating my book award
There are many definitions in the world of what it means to be "family." In Latin, familia refers to the "servants of a household" or the "estate, property and members of a household, including relatives and servants." In English it has come to mean something slightly different: "the collective body of persons who form one household under one head..including parents, children and servants.."(Online Etymology Dictionary) And yet, even with the more modern day English definition we must ask ourselves what "household?" The physical space we dwell in? The emotional space we allow people to occupy? Or the community and societal spaces we spend our time in? 

How do we define family and are we allowed more than one?

I have been struggling a great deal with my notion and understanding of what it means to be a family over  the last several years. Mostly because my family circle has evolved. It has grown and shrunk at the same time. While I used to see my immediate family as my parents and siblings (5 of us in total), I now consider my immediate family to be my husband ( 2 of us and 2 dogs). Both my brother and my sister are now married and have kids so I have a larger extended family that consists of 3 nieces, 2 nephews, a brother in law and a sister in law. My cousins have also had children and our family blood lines keep growing. 

Having a family and being there for your family are values that were instilled in me at a very young age. 
Some of my immediate and extended family
Family is forever I was told.

Blood is thicker than water I was told.

You have to...because they're family.

And yet, over the last several years I have come to question these "familial obligations" because although they represent a core value of what it means to live and grow up Latina, I wonder if it's something we need to start reevaluating as a culture.

This past weekend, I spent an incredible three days writing, talking, laughing and even crying with 5 other Afro-Latina writers. (That will get its own blog post next week) While driving to Galveston, where our retreat house was located, me and two of the other writers had a conversation about Latin families and if it could be possible that one of the reasons we fail to progress as a people and a race is because of this antiquated notion of "familial obligations." It is often the case that many of those who feel obligated to help their blood related family members do so simply because it's family and not because those receiving the help actually deserve it. We, especially Latina women are often very self-sacrificing. We give and give and give and get nothing in return...especially from family. It drains us, but we keep giving. We insist that family is forever. And yet, our definition of family is limited to those who share our same blood. Why?

I can say, that this has frustrated me GREATLY over the last 8 years since I was diagnosed. Why? Because my blood family has often failed me when I have been at my lowest. Because my blood family has often failed me when I have been at my highest.

I am truly a giver. I give love, attention, money, joy and even praise to and about my family. I plan parties, send gifts, condolences, good energy, prayers, FB posts, Tweets, cards etc. for their highs and their lows. I have been giving for as long as I can remember. (Was I always the nicest sister or daughter, no..but I have learned from that and changed). Have I received as much in return? From my parents, YES. From others...not so much.

My Sclero Family
Am I asking to be showered with gifts and attention? No. But is it too much to ask for equal treatment and consideration? I don't think so. There are some blood family members for whom I don't give as much to anymore, because I'm tired. At the young age of 30? Yes. I'm tired of giving my time and attention and energy to those members who have not earned it, who have failed and disappointmted me time and time again. Who never bother to call when I'm laid up in a hospital bed to IVs and beeping machines. Who can't bother to text a note of congratulations when I win a book award or invite me to dinner when I'm in town but expect me to provide hotel service when they want to travel to Galveston and spend the weekend at the beach with their families (without inviting me of course). No. I am done with THOSE family members. If they want me in their lives and they want to be treated like family, they will have to start treating me like family first.

Family, to me is not about the blood that runs through your veins. Being sick and dealing with extreme highs and lows in my energy and in my mood has shown me that it is deeper than that. It is about being there for someone when they need it most, whether that's at a joyful moment or a painful one. Family is my mother-in-law who sponge bathed me only 2 months after marrying her son because I was hospitalized for 3 days and couldn't do it myself. Family is my best friend answering her phone at 3 am, telling me why I shouldn't take a bottle of pills. 
My poetry family
Family is showing up to the hospital EVERY SINGLE TIME I've been there over night (Marina) and brining me magazines, cupcakes, and a smile. Family is texting me once a week just to say hi. Family is remembering to celebrate my succeses as much as I celebrate yours and allowing me to cry when you don't know what to say. 

Family can be made in a day and broken with a few words. Family admits when they are wrong and work to make it better. Family takes but they also give. It is not a one way street.

I have come to understand that I have many families. My Scleroderma and Lupus families who understnad what it means to be chronically ill. My friends turned into sisters and brothers family- all those that have been with me for years through the good and the bad. My Houston poetry family that encourages me to keep writing and performing. And this past weekend, I made a new family with 5 new sisters.
Afro-Latina sisters walking fiercly!
My Afro-Latina writing family will be with me forever and I hope it keeps growing. I am connected to these women not by blood (though we all share our African roots), but by something greater. Something that will reverberate after our blood has dried up and our bones have wasted away. We are connected by a shared mission and a shared experience. Our stories brought us together and our stories will keep us alive long after we are gone. I feel closer to these women than I do to some of my cousins (not all of ya'll, relax..if you're reading this you're probably not one of those cousins lol). 

We are all educated, passionate women who empowered each other and didn't bring each other down. We are all at different points in our journies as women and as writers, but we used that to help each other grow. In a matter of 72 hrs I made lifelong friendships with some pretty amazing women that were hard to say goodbye to when I dropped them off at the airport. I cannot tell you the last time I was filled with such joy in my heart for people...for people I barely knew. (I'm usually not that upset when I say goodbye to "real family") These women transformed me and made me a better person. THAT'S what family does. They raise you up and make you want to be the best version of you.
My Afro-Latina Sisters
Family isn't supposed to make you bitter and sad. Family shouldn't emaciate your soul and your spirit. Might they disappoint you from time to time? Sure, we're all human and we all make mistakes. But will you forgive each other, learn from it and become stronger together, yes. That is what REAL family does. Family, the people that fill your emotional and mental household should nurture and encourage you in the best of times and in the worst of times.

My blood family and my family family will continue to grow and shrink with each year. Those who give and take as much as I give and take will be my familia. I get to choose who I call and consider my family. And only those people who have earned a place at the table will have a chance to sit and break bread with me.

And...The one who never fails me:
Mami and Me