Cake By the Ocean

Hotel Resort in DR on Honeymoon 2009

A vacation is what you take when you can no longer take what you've been taking.

-Earl WilsonI am in desperate need of some time off, but only because NOW (that I'm finally feeling good) is the best time for it. I love everything that is happening in my life and I love staying busy, the work I do doesn't feel like work, but...now that I might actually ENJOY a vacation is precisely when I should take one. For too many years Lupe and I took vacations to try and get away from all the physical pain, pills, and stress of dealing with my illness...man what an incredibly stupid idea. I was miserable for 95% of the time on 100% of all those trips. I was either in too much pain or too tired to do anything fun and so it was being sick just in an expensive hotel in a different city. While we would try to do a few things, it usually amounted to one mini adventure and one new restaurant a day. Followed by room service, SVU marathons and lots of sleep. Don't get me wrong, I will treasure those memories because at least I got to spend them with the one I love and he was always very accommodating and didn't care what we ended up doing...but sheesh, it really ended up being more trouble than it was worth because of all the prep work that goes into making sure I have what I need while on vacay. (We learned the hard way to never forget things like pain meds, hand warmers, blood pressure cuff, wrist braces etc.)

Vacationing with a chronic illness is a process. We have to mentally prepare ourselves and our bodies for the exhaustion that comes with traveling. Whether that's sitting in a car/bus or train for extended

Cat Scan of brain on Honeymoon (Thunderclap Headache)

periods of time, walking extensive distances across international airports lugging baggage, or dealing with climate changes, food sensitivities and the fact that you will not be sleeping in your own bed for a period of time. You have to make adjustments, you have to hope for the best and prepare for the worst. Lupe and I (jokingly at first, but now very seriously) always pay attention to and/or seek out the nearest emergency room or urgent care clinic to wherever we're staying and I always make sure we're no more than a mile away from a Walgreens or CVS...just in case. Some people like to site see, I point out and get excited about pharmacies and med centers.

But, now that I finally have the energy to do things I want to take a real vacation where we can travel and do things and not be confined to a hotel bed unless we WANT to be. I will still take precautions of course but I really feel like this time around I'll be able to truly enjoy myself and not live in fear of "what if I flare while away from home?" I think I spent too many years using vacations as a way to try and get out of my head and out of my body, and while sometimes it worked, most of the times it just left me feeling more hopeless because nothing DID get better OR easier while away, it just reinforced what I already knew to be true: You are broken and you cannot escape this, you are not normal, nothing is ever going to be easy, not even a vacation. In the end it was less of a vacation and more of a "come to Jesus" moment each and every time.

Trip to Miami 2012

And it's true, you can't escape your illness, it lives inside you, and that was something I had to learn the hard way. It doesn't mean that we can't enjoy life or take vacations or try to relax, not at all, I mean that's exactly why we should! But we shouldn't expect our problems and our physical pain to disappear simply because we changed geographic locations. I guess you could say I was naive..or maybe just hopeful. Either way, what I learned about vacationing while ill is...don't vacation while ill. Take a bath or get a massage. It's easier. It's cheaper. And it's a lot less exhausting. OR take a vacation where all you're expected to do is: take a bath, or get a message, or sleep. - Do this in a city where there's nothing to do or see and it's really ugly so you don't feel guilty about not leaving the hotel room or spa.

So, now that I'm approaching some sense of normal (sshhh, don't say that too loudly)...I'd love to

D.C. Winter 2010

have some cake by the ocean (sounds like a lot of sand in my teeth, but I love cake and the ocean so), or maybe a baguette near a river, or wine by a vineyard..just some place where I can begin to form new memories of travel experiences that are fulfilling and enjoyable rather than tiring and troubling.

Suggestions??

Write to Heal Series

“You must stay drunk on writing so reality cannot destroy you.” -Ray Bradbury

The more involved I get with the writing community, the more I realize that we are all writers because we are trying to heal wounds. Physical ones, spiritual ones, societal and political ones, personal and emotional ones, historical ones etc. etc. etc. We write to tell stories, because telling those stories is what helps us deal with and heal from the trauma we and others have incurred. It is the reason I started this blog 5 years ago, it is the reason I began writing at age 13, to cope. To try and understand and make sense of what was happening to me and the world around me. Writing is now a significant part of everything I do and I wouldn't be me without it. For these reasons, I am starting this Write to Heal series, whereby on a regular basis I will share with you updates on my current writing projects, performances and publications. Writing is part of my healing process, just as important as my meds and doctor's visits, or eating right and meditating. Writing is what motivates me to get out of bed in the morning and keeps me sane when nothing else will. I wish to celebrate all that writing has given me and hope to inspire others to use writing to help them heal as well. 

So, what have I been up to writing wise? And what's coming up? Well...

RECENT:

1. CRJ Poetry Night- had an amazing time reading and performing new and old work at Lupe's school on Friday night to a crowd of teens and their parents. It was a fun night with good energy and lots of love. I sold three copies of Island of Dreams and received an open invitation from the Dean of Students to return to teach there whenever I wanted. 

2. NACCS Tejas Foco- following the night of fun and inspiration, I spent Saturday morning at Lone Star Kingwood presenting poetry and conducting a short writing workshop for attendees.

My focus was on the idea of words and culture getting lost in translation and how that impacts identity and my writing. It was really a great experience for me since I'd never conducted a workshop like that for a conference and I even sold 4 more copies of Island and received many compliments from people whose work I respect and admire...so that was really awesome.

3. Hanging w/Writers- The rest of Saturday was spent in great company chatting, laughing, eating and drinking with poet laureate Laurie Ann Guerrero, UTEP professor Tim Z Hernandez, and Lupe. I don't think I've laughed that hard in a VERY long time. It was rejuvenating and refreshing to talk shop with seasoned professional writers who are very down to earth and so so kind.

4. Semi-Finalist- Recently I found out that my essay collection Revelations was selected as a semi-finalist for the Rose Metal Press Flash Creative Non-Fiction Chapbook prize! The winner, UTEP professor Lex Williford will have his collection published (which I'm so excited about) and at least I get bragging rights to say that my collection was considered (There were 4 finalists and 7 semi-finalists out of 120 submissions, so that's not half bad!) This definitely keeps me motivated to keep working on it and making it better so I can submit it somewhere again before the end of the year. 

#winning 

5. Frijocheulas Publication- My poem Frijochuelas was recently published by La Galeria Magazine online! Woo hoo! It's already been shared over 140 times! Please spread the word and share with your friends!

6. Landing Theatre Company- this past Monday night (Feb 13) the hubs and I inaugurated the new performance space of the Landing Theatre Company with some of our work. It was tons of fun, a different kind of crowd and received a warm welcome. Being in that space made me want to return to theatre...and who knows...I just might. 

UPCOMING:

1. Speak!Poet- coming up on March 5th at 2pm I will be reading old and new works and selling copies of my book at Brazos Bookstore. I'm looking forward to it as Brazos is a well-known independent bookstore here in town where all the awesome writers I've known have shared their work. It's free so please come out and support!

2. American Literature Association- Next weekend (Feb 27-28) the hubs and I will be in San Antonio reading and performing our work for the American Literature Association. The focus is on crossing borders in literature and in life and we are going to do a joint piece. Power Couple Fun!

3. AWP- Last but not least, I will be attending AWP this year for the first time. We get to go to LA and spend four days hanging out with all our writer friends, so it will be like what we did this past Saturday night times 12! Can't wait to physically meet so many writers who inspire me everyday (I know many of them through FB and social media but have never met them in person). I am looking forward to being inspired once again and coming away with an even stronger network of writer friends, colleagues and family. 

That's really it for now but I think that's enough! I know writing and investing time and energy into my writing career is healing because I feel less pain and have less fatigue when I'm doing what I love and am surrounded by people who support and understand what it is I do. So..on with the writing!

In Honor of Love Part II

Hey folks,  

I’d like to introduce myself, I am Jasminne’s hubby, Lupe.   Thanks for reading this and for supporting her on this journey and this blog.  She is an amazing writer and a damn great survivor. I know that if you are following this, then you have been affected or know someone who is affected by an auto-immune disease. 

I think about the very day Jasminne told me about her diagnosis and not a day goes by that I regret the decision to “stick around”, as she puts it.  I wouldn’t change a day or a moment.  In fact, I think, in part to her illness, it has reminded me of how human, how strong, how incredible she really is.  Even on my toughest day, she makes everything seem relevant. She is the soul to everything I work on. She’s bae, she’s honey, she’s everything that is right in my life. To those of you struggling with Lupus or Sclero or any other disease, you are in my thoughts and prayers. My heart goes out to you for the struggle and triumph that comes with this part of life.  You have my utmost respect and love.   Many blessing to you and yours.   AND NOW, ON WITH THIS SHOW!

So, as part of the Valentine’s Day celebration festivities, la wifey has asked me to impart some of the knowledge I have gathered from being the OTHER partner in this life with aliment.  Below then, you will find some of the things that work (and sometimes they don’t work) to make life a little easier if you are dealing with Auto-Immune issues.  Here goes:

FOR THE SPOUSE THAT ISN’T SICK:

1) Make sure you are comfortable with telling your lovely sick partner to “shut the hell up and

do what I tell you to do.”  Screw belittling and degrading.  I couldn’t give a damn if your feelings are hurt.  I need you to be as ok as possible.  Fight me and you lose.  Fight me and your disease?  Not a smart idea.  You will only tire yourself out and then I have to take care of you when I am angry.  I don’t do angry and reasonable.  I was born stubborn (thanks mom and dad) and argumentative and bold (thanks mom).  I love a fight. I love an argument. I am no control freak, but if I want my way on something, I get it.  So if all I want is for you to sit down and rest or for you to take your meds, just shut up and do it.

I know I sound rough, but the fact of the matter is, you as the not sick spouse, you sometimes have to be an advocate for the ill.   You might have to take charge of a situation and filter the information, medicine, and the world for your loved one.  You have to be ok with taking charge, even if the ill don’t want to be taken care of.  Fight. Fight for them and fight them if need be.  Be unafraid of it all, because in the end, you have to do what is best for your loved one. Even if they think they know better (I am looking at Jasminne).  

2) Find time for the things that make you happy.  Is this a selfish concept?  Hell yes. Are you are balancing the stability of wellness for your spouse and the stability and well-being of your life? Sounds heavy don’t it.?  It is. And, it’s a hard balancing act, so cut yourself some slack. You are human and deserve to be nice to yourself.  So if heading to the comic book shop to pick up something to read or binge watching a show on Netflix is a guilty pleasure, then indulge.  You are just as important as the life you take care of.  Don’t forget that. You are not just a husband/wife/nurse/provider.  You are the person who eventually fell in love with someone else special. Remember that and take some time for yourself.

If you are like me, then you get a guilty kick in the gut if I catch myself having too much of a good time, but Jas reminds me that she likes to see me happy and sometimes it helps to break up the craziness or the monotony of such a life.  

3) If your spouse yells at you for something, remember it might not be you. Be patient.  I   I can be in a perfectly good mood and then Jasminne can come in, in a jacked up mood and argue, be pissy and down right nasty with me.  I used to respond with a “what the hell is a matter with you??!?” and a fight would ensue only later to find out that she was in a lot of pain or her meds had her all jacked or the doc gave her nerve wracking news, any number of things that are related to illness or managing pain and none of them had anything to do with me.  So now, when she is in a mood, I just back off and then after about a half hour, when I can tell it was all the pain and the fatigue, I can ask what she needs.   The situation deflates itself and the hostility passes and then we can talk about what was really going on.   All it takes is a bit of open communication and patience.  Just because someone could direct their anger at you, which might happen, learn to read between the lines and get to the root of the issue.  Don’t take it too personally.  It might feel like a personal attack, but there might be something else to it. Check in, assess what’s up and if it’s a real issue, still talk about it.   Your ability to communicate and make someone else feel better is sometimes more important than your ego and winning an argument. 

4) Remember when to be spouse and when to be caregiver -  this one is tricky. 

Some days I am excellent at it, some days I suck at it.   There are moments, when making sure she is taken care of and as pain free as possible is the goal. But sometimes that is unrealistic and all I end up doing is being down on myself for not being to “do more”.   I would make that the goal vs. making sure she was happy, or making sure we got the chance to do something amazing.   I used to be focused on the wrong thing, especially early on.   Nowadays, I do lots of checking in.  Is she up to running around town and looking for new coffee shops?  Is she good with looking at murals all day or going to the beach.  If she is, then we go. If she’s not up for it, then I put on the gloves and make sure she is resting.  You have to learn when to take care and when to love; when to embrace and when to stay up, check for fevers, blood pressure and make sure she is sleeping well.  It’s a balancing act.  Sometimes her body runs the show, but sometimes, we get to dictate that and on those days, we party hardy (*NOTE, this means Netflix and chill or some froyo, or something).

personally used to have a hell of a time with this one. I am used to arguments (home training) and having to fight back when you get yelled at, ESPECIALLY if you haven’t done anything wrong.

5) Be Flexible.  If you are an easy going person, like me, then this will be no big deal.  But if you are like the wifey, who is a living agenda, then this will be hard.  I am a spontaneous kind of person, so when I want to go and do something and spend time with la wifey, then I just should be able to do that right?  We used to when we dated early on. But this changed once life changed.  Now, I have to check in and see where she is at with pain or conditions brought on by meds, etc.  If she is good, then we make the most of it.  IF she starts out good and then crashes along the day, then we make the most of it and if she is not doing well at all, then we make the most of it.   In the end, its all about communicating wants and needs.  Learn to give in if need be, some of the time.  Sure, someone might think you're a flake for backing out of plans often (because it happens often), but your closest friends know the deal and will respect it.  But don’t ever get your heart too attached to any one thing. If it doesn’t happen right now, it might happen later.  Things are always changing from one day to the next and if you are real particular about how you want to do stuff, it might frustrate you.  Roll with the punches.  You will find your life with your spouse much more fulfilling this way.   If I had a dollar for every time we tried to go dancing or out for drinks and then we stayed home because she had a crazy reaction to a drug or ended up too fatigued, we'd be rich.  If I didn’t know how to let stuff go, I would also be a sad man.  But she recoups and she wants to go out as bad as me sometimes and so, when you can you do.  You live it up and you change up and learn to adapt to the needs and wants for both of you… 

In Honor of Valentine's Day Part I

I know Valentine's Day isn't until next week, but this is really the only topic on my mind right now: how lucky I am to be married to Lupe. For so many reasons I don't have the time to get into, but mostly because being married to someone with a chronic illness is no easy task. (Being married to ME is no easy task, coupled with my chronic illnesses and you pretty much are achieving the impossible...so the husband of the year award goes to...!) Pretty sure any other type of man would've left me by now, and I actually wouldn't have blamed him. But not Lupe. And for that I am beyond thankful. (Don't worry I'm not going to spend the next page and half just gushing about Lupe, this is going somewhere...)

I am thankful for having a man like Lupe as my spouse because as I witness other couples struggle with their relationships when one of them gets sick, I realize how "together" Lupe and I are. Was it always this way? No, of course not. The first few years were hard. We had to relearn who we were as a couple with chronic illness as a part of their lives. We had to redefine roles and responsibilities and learn a whole new level of patience and compromise with each other that now serves us well. And our marriage is stronger because of it and I have become a better person overall too.

On our wedding day...

This week I'll share with you what I'VE learned as the "sick one" to help keep a marriage like ours going, next week...I will ask Lupe to be a guest blogger and share what HE'S learned.

So what does it take? Here's what I've learned:

For the spouse that is sick:

1. Sometimes you just have to: "Shut the hell up and do as you're told." Belittling? Perhaps. Degrading? Maybe a little. But is it almost always because your spouse wants the best for you? Yes.

This was a hard one for me to learn and accept. I was born stubborn (thanks dad). And I hate being told what to do (thanks again, dad). So in the early years when I insisted that I was healthy enough or strong enough to do something that Lupe knew would only cause a flare I fought him tooth and nail INSISTING that I could do it. I didn't want to let go of the life I knew, but he could tell that pursuing that life was going to kill me. He was only trying to protect me from myself.

This is also true of taking meds, visiting doctors, going to the ER, driving yourself when you're heavily medicated etc. Just listen to your spouse. They care about you, they want what's best for you and even if you feel "fine".... they might be looking at you and realizing "he/she is going to collapse at any minute and I need to do something.." so let them. Let them help you. Take the meds. Go see the doctor. Get out of the driver's seat (literally and figuratively) and just shut the hell up and do as you're told.

Trust me, this will save you unnecessary bickering and arguing which will only make your symptoms worse.

2. Don't let your illness consume or define you. I know, this one is especially hard to do. Trust me, it's taken me years to return to the things I loved and that really defined me, but you have to try. When you're in pain day in and day out it's all you can focus on, all you want to do is get better. But don't forget, that your spouse didn't marry your illness. (Even if you were sick when you got married) There is so much more to you than being sick and THAT'S what your partner loves about you, so try not to lose that.

Lupe and I reading poetry together

I'm not saying you should ignore how you feel or seek help or talk about your disease. But remember who you were and what you loved BEFORE you got sick and try to keep that in your life as much as you can. You will BOTH be better for it.

Are there things I can't or choose not to do that I once loved? Hell yes! I would give anything to be in a play again. But I know that I just can't physically commit to that anymore. So what do we do instead? We take the time as a couple to go watch plays and that fills me up just as much. It used to make me very sad that I couldn't do theatre anymore, I used to wallow in that which of course only made my flare ups worse. But now that I have found alternatives and can appreciate theatre without needing to be a part of it, I am a happier person and in turn our relationship is happier.

3. Check yourself and your emotions OFTEN. Before you yell at your partner for simply walking through the door or before you start crying about how they don't "love you enough" ask yourself the following questions:

A) Have I been in pain all day? or for the last several days? If the answer is yes, you're probably more upset about the lack of relief you've felt than at your actual spouse. So instead of yelling at them, COMMUNICATE. Tell them: I've been in pain. I'm frustrated. I don't know what else to do, can you help me try and solve this.

B) Am I mad at THEM or am I mad because I'm sick? Again, this comes with things you have to think about. Did they actually do something wrong, inconsiderate, rude, disrespectful etc? Or is the daily exhaustion of being sick just wearing you down? It's ok to cry and scream and break shit when you've just had enough of being sick. But let THEM know that that's why you're crying, don't direct your frustrations at them, that doesn't do anyone any good.

Dancing at a wedding

C) Can this be fixed with: food, water, sleep, my medication, a bath, working out or a song? This requires being very in tune with your body. Listening to what your body is asking you for and responding to that. Too often (and this still happens) I will snap at Lupe or have a mini meltdown simply because I haven't eaten enough that day and I just didn't realize it. Or because my body aches and I'm fatigued and all I need is some sleep. It's hard to be nice to people when your basic needs haven't been met, so before you engage in an argument, listen to your body and see if it's trying to tell you something. If, after all your basic needs have been met and you still feel the need to confront your partner about something, then do so...but I garantee you'll be nicer about it at least!

4. Let go of "normal." This is your new normal. Stop comparing your life and your marriage to everyone else's or to what the media says it should like. You only have sex once a month, or once every two weeks, or just not as "often as everyone else"? SO. BE. IT. Give yourself a break, you live with chronic pain for christ sake! The fact that it even happens is a miracle!
You don't go out on romantic dates or exotic vacation getaways? WHO CARES?! Does your spouse cook for you when you can't get out of bed, or pick food up? Then he/she still loves you. Does your spouse kiss you goodbye and send you texts or messages throughout the day to see how you're doing or if you need anything? Count your blessings!

On vacation in Denver

Of course I wish Lupe and I could be more spontaneous and take random vacations or have fun adventures more often. But we can't. Because for me to leave my house even on a daily basis I need a litany of things. From meds and mittens to ensuring that I can eat the food wherever we go. It's also hard for Lupe to even PLAN romantic things because truth is, I may not feel well that night or that weekend and so his plans inevitably go awry. But guess what makes us an awesome couple?

We've learned to just roll with the punches and LET IT GO. He romanticizes me by spontaneously bring me flowers and fuzzy socks when I've had a rough week. He knows when I need rest and does the difficult task of canceling all our plans for the weekend even if it makes him look like a flake. I am thankful that he knows when I need to rest and that he is able to take charge and make sure I get that rest.

5. Accept that yes, sometimes you are the patient and your spouse is your nurse....but that is only ONE of the roles you each have to play. This one is hard. This one sucks. But this one is so very real. It's hard to be in this position as a grown adult (especially if you're young) but you just have to accept what is. As a woman, I want Lupe to see me as sexy, desirable, pretty, competent, strong etc. When he's helping you take off your underwear to go pee as you drag an IV bag into the hospital restroom...well there's nothing sexy about that. But you know what it can be? Funny. Especially if he grabs your boob in the middle of it. And sometimes, laughter is all there is left. When the sexy ain't coming back, and when you don't feel beautiful because your partner needs to sponge bathe or spoon feed you, just laugh.

I have learned that even if I don't want him to be, there will be times in our relationship where Lupe will have to take care of me and I will have to let him. But I've also made a promise to myself, that in the times when I can take care of myself and I have the energy to be all of those other good things, that I will. Because he deserves that version of me as much as I do. I cannot let that Jasminne die simply because it's easier to.

The nurse patient relationship we share is one most couples who stay together for a long time will have to live through. It just so happens that it will happen more often for us, but we know better than to get stuck there.

There's so much more advice I could give, but most of it just falls into the "general tips for keeping your marriage alive" category. Things like compromise and communication, not leaving the house angry, finding intimacy, make time for each other etc. But the truth is, what ultimately makes our marriage work is the commitment we have for each other. We are committed to building a life together, to making each other happy, to being selfish when we need to and pursue our individual dreams to make ourselves happy, and to staying.

The best piece of advice I ever got before getting married was the following:

"It's harder to stay. Leaving is easy. But if you can stay, if you can fall in love with the same person over and over again, year after year and stay...then you can do anything."

While I was in the hospital...and I'm still completely in love with this face!