Monday, December 6, 2010

It's All About...

Control. When I feel a loss of control in ANY part of my life I wig out. I stress and eat. Or I fall into a pit of "I don't want to do anything" and eat. These feelings inevitably lead to a flare up, which makes me feel like I have even LESS control etc. So needless to say, after trying to be in a great mood all weekend by going Christmas shopping and spending time with the hubby and friends, by Sunday I fell into the pit.

I have been attempting to reduce the prednisone dosage 2.5mg at a time so that I could be off of it come sometime early next year. Well, last week I dropped down to what I was hoping would be the final 2.5mg a day dosage, and I've never felt more miserable. Hip and joint pain is back. Fatigue is almost unbearable. And I keep getting these "mini" headaches. I am not pleased. While I keep trying to work through it all, push forward, workout, stay awake...sometimes it just all gets the better of me. I slept in until 10am on Sunday (which is HUGE for me), got up, went Christmas shopping for two hours, came home around 2pm, ate lunch, fell asleep from 4pm-7pm, got up, ate dinner and watched a movie, was back in bed by 10pm. And that, my friends is how fatigue works. (Putting myself back up to at least 5mg, so I can make it to the holidays)

So, what did I do this morning to regain control? I called in sick. I was feeling miserable at 6am this morning when I decided to make the call, and now I'm feeling 10x better already, but I really felt like the only thing I COULD control was whether or not I went to work today. And I took charge. I decided that my health was more important than money, so I may not be able to buy the fanciest Christmas gifts anymore but at least now my day is free to do whatever I WANT, which includes grading papers, but it sure beats teaching.

Mind you, all these revelations didn't just come to me miraculously. I have been mulling my "situation" over for the last few days. What really did it for me though, was going to the baby depot at Burlington Coat Factory on Sunday. I was simply shopping for my baby cousins and I managed to get all maternal. Which led to me becoming sad because I realized that I was a long way away from becoming a mother, especially since it was obvious that I still needed the meds just to function. Well, after that realization, I became a hot mess of sadness and fatigue, and figured that if I couldn't control my own uterus, then at least I would control my Monday.

This disease isn't fun. I was having some good days, and now I'm having some bad ones. I know God is with me regardless, I'm just having some trouble listening to him right now. Things will get bright again soon, I'm sure, I just need to find the serenity to accept....

Be still, be well
Jas

Tuesday, November 30, 2010

The Wind Blows

Happy Be-lated Thanksgiving everyone! I hope you felt as blessed as I did this year and gave thanks for all the wonderful and even miserable things that happened to you this past year because hey, we wouldn't be who we are with the good, the bad, the sweet AND the sour.

This year I spent time with my parents, my sis, my husband and my in-laws. We ate a lot of food, went to Moody Gardens to check out the Festival of Lights, which was awesome, and just spent time together sharing stories and a good laugh. It was great.

This year I gave thanks for the following things:
1. My husband.
2. My health.
3. My family.
4. My friends (especially Dan and Sabina)
5. My great job.
6. My health ;)
7. My past experiences
8. All the wonderful things that await

The list could go on, but to me those are the most important. I expect and hope for only more wonderful blessings and I know that I have God to show me the way.

Although I won't really know how my health is "officially" doing until February (my next check up date) I am still feeling really great. I'm running almost 2 miles a few days a week, I'm lifting weights without the horrible pain the day after, and I'm still meditating and doing yoga. So, I only expect the doctor to say good things. There is not much else to say, life is quite calm these days and I really like that, even if I pretend not to. So, without a whole lot of drama, I leave you with a quaint poem I wrote yesterevening. :)

There’s a willow tree that cries outside my window

I hold its branches in my eyes

And feel its leaves kissing the wind that cools me

It’s a tree I can’t climb

A part of my world I can’t converse with

She weeps and I can’t comfort her

She smiles but I don’t laugh

The sunlight weighs her down

And I am afraid to touch her

The stray cat next door finds her unnecessary

And I stand aloof, everyday

Hoping she’ll notice my stare.


Be still, be well.

Jas

Saturday, November 13, 2010

The Courage to Write

"You should be writing from the depths of your soul...but you must have the courage to do so."-Friedrich Behr (Little Women)

It has been a minute since I last wrote. And I guess that's what happens, when life is "alright." It's easy to share when you're high on a mountain or down in the pits of hell. But it's easy to forget that sometimes, life just is. And that even in those moments, it's important to reflect and share.

Insomnia is double edged sword. I haven't slept well in over three months, usually not more than 5 hours a night if I'm lucky, but I manage to never feel crappy the next day. I'm usually just pissed off during the night that I can't sleep. And most nights, I just lie in bed and think, since I know my body needs the rest even if my mind refuses to shut down. But this time, I had the motivation and inspiration to begin writing again.

As many of you know, I was recently working on children's books. I'm still waiting to hear from publishers, and if I don't receive any rejection letters or acceptance phone calls by December then I'll continue submitting to other places, but I've sort of put that on hold for now. I'm back to writing my memoir. But this time, it's better.

I'm not trying to "toot my own horn" but I know it's better because it's just flowing out of me. I'm not thinking about trying to sound poetic or like a literary genius. I'm just telling my story, as it happened. And, I'll admit, it's still very scary, but it's real and it's honest and it finally feels right.

I don't know if it'll ever get published, I don't know that I care if it ever does. I just need to get this out of my system and write down in the best way I know how, what I went through, what I have to look forward to, and what I'm still afraid of. I consider myself lucky to have the words, the time and the inspiration to share my journey, cause I now realize that a lot of people don't have that. So maybe, my words can be the words that others will use to express and help tell their story. And, I guess, if I can do even just that much, my experiences and my physical suffering will not have been in vain.

(P.S. my birthday was GREAT! Especially camping. Nothing like being in the woods with friends and good food, Thoreau and Emerson style.)

Be still, be well.
Jas

Thursday, October 28, 2010

On a Windy Thursday Morning

Three years ago this month, I first heard the words: You have scleroderma. A few months before that it was: You have mixed connective tissue disease. And a few months before that it was : You have Lupus.

The last three years have been a whirlwind. Many ups, many downs. I don' t know if the worst is over, or if it is yet to come. But I do feel really blessed lately and I can only hope that this is just the beginning of greatness.

I realized this morning, as I listened to the sounds of the world beating against my window, that I have grown wiser. That I have become stronger. And that I am not alone.

I know that I have many gifts to share with the world, and the world is waiting for me patiently. Others are suffering as I have suffered and it is my responsibility to reach out to them. Now that I am in a better place I can be open about what I've lived through, I am not afraid to laugh about it, I have the courage to cry about it openly, and on any given day I can choose to pretend it doesn't exist if that's what will help me make it through.

Chronic to me, means forever. And as I've said before, forever is a long time when you're only 25. But instead of accepting the "chronic pain" part of it, I have chosen to accept the "chronic learning, chronic changing" aspect. Because as this illness changes within me, I change as a person. I learn something new about myself, about the world and about "it" almost everyday and for that I am thankful. So many "average" people walk around the world never experiencing anything amazing. Never learning anything new. Stuck in a rut. My mind and my body will never let me be stuck, it is a constant struggle, every morning, afternoon and night. But that struggle reminds me that I am alive, and that one day I won't be, so I need to be the best me I can physically, emotionally and spiritually be at that time.

It's not easy being in my head all the time. Experiencing life with all my senses every minute of every day, but three years ago, God asked me to wake up and hear the sounds of the world. He needed me to open my eyes and see life. He has taken me by the hand, pulled me out of the mud, and pushed me into the wind.

Be still, be well.

Jas

Friday, October 15, 2010

The Sound of Pulling Heaven Down

When I learned to let go of the noise and began listening to God I was able to hear sounds. I heard the sounds of birds flying over still waters. I heard the sound of the sun setting on another day. I heard the sound of my own heart asking me to not give up.

Yesterday, two great things happened to me: I RAN, yes, ran a mile for the first time in over four years. When I was first diagnosed, and my body seemed to be deteriorating away by the day, and my joints ached, and my skin thickened, I believed that doing every day things in a normal way would never again be a possibility for me. Yesterday at around 6pm I proved myself wrong. Right before going on my "walk-turned into run" workout, I received the results from all the tests done on me last week. (I had 12 viles of blood drawn/an EKG/a chest x-ray/and a pulmonary function test) I couldn't have been happier with the results. Just to put it all in perspective:
Last year, this time I went to see a lung specialist. At one point in our visit he told me that I might be on my way to having to use an oxygen tank. As you can assume I was not at all pleased. Of course I freaked out and fell into a slight depression as I tried to fathom walking around with a giant green tank attached to my side as I directed a middle school play. It was not the brightest days of my life. Although the doctor eventually concluded that I would not need an oxygen tank (for now) he was concerned about the slight fibrosis building in my lungs and told me to be weary.
Now, a year later almost to the day, the letter I received in the mail yesterday said, and I quote: "Lungs are unremarkable. No sign of fibrosis found in lung tissue." So forgive me as I do this:

YAY!!! WOOO HOOO!!

I don't know if it's purely coincidental that I was able to run a mile after learning about this news, but truth be told it didn't even really sink in until after I had ran, so who knows. Regardless, I have made incredible strides over the last year and I can only hope to continue to grow. To continue to believe in in myself and in God and to understand that there is a rhyme, a reason, and a sound to everything and for everyone.

Be still, be well.

Jas

Tuesday, October 5, 2010

More Recently

So it's been awhile since I last wrote. Some might say that's either a really good thing because it means I'm keeping busy and nothing drastic has happened, some might think it's a bad thing because I'm so busy and just too damn tired. Well, thankfully it's the former.

Work has been great. Easy. Relatively calm. (Aside from the pressure I put on myself) And the kids are really great with quirky personalities and a good sense of humor. I've been trying to submit work to get published on a weekly basis so that's been nice. (Even with all the rejection letters). And I'm on a mission to lose some of this prednisone weight. So all in all, pretty good outlook on the future.

Now, on to business:

Went to the doctor today for my quarterly check up and the results are in... (drum roll please)

My skin scores are almost all from 0-1. What is a skin score you may ask? Well the doc pinches your skin in various places (back of hand, forearm, thighs, face, chest etc.) and sees how much skin he can grab. You can get a 0, 1, 2, 3. 0 is GREAT, 3 is the WORST. To give you some perspective, when I first started I was at 23/30ish, After first year with this doc it was down to 18/30, three months ago I was at about 11. Now after all the zeros I heard I venture to say I'm about 5-8. So....Woo hoo!

Secondly, if you've read any of my previous posts you know I had a painful procedure done recently (An EMG) to see if I had any nerve or muscle damage(loss). Although the doc can't say for sure because he hadn't spoken with neurologist yet to confirm, he does believe that although I have muscle involvement I don't have "active muscle inflammation." Which of course is WONDERFUL. What that basically means is that my muscles aren't neccessarily deteriorating like we all once thought. (Maybe I can go for a jog now without feeling terrified)

Lastly, probably the BEST news of all, the doc has lowered my prednisone dosage to 7.5mg. Which means I can probably start to lose some weight, get some sleep at night, and not feel so anxious all the time. I'm hoping to really be off the prednisone by the end of the year, so keep your fingers crossed folks and say a prayer.

And that, my friends is what's been going on. My next appointment is in February, which will be the official one year marker of when the doc said I could ask him again about getting pregnant, so you better believe I will be bringing it up at the next visit. :) If it's a no go, then I'll just have to work harder. And if it's a go...then me and the hubby gotta get to "work!"

And with that thought I bid you good evening. Life is good my friends, and don't let me or anyone else tell you different.

Be still. Be well.

Jas

Monday, September 20, 2010

It's a Monday

The only people who truly change are the ones that have to because they have lost a part of themselves already.

I am learning this through my own experience. God revealed to me the other day that I need to finish "giving birth" to myself before I can birth other things. (That may include books and yeah, of course, babies)

Meditation is a powerful thing, I believe in it more and more each day, especially when things like that get revealed.

I know it may sound trite, cliche, hokey or what have you, but I truly believe it and I agree with Him. I am still learning all about the "new me." I am in a state of change, of rebirth, of discovering what I can do, what I can't do, what I want to do, and what I have to do. That is what this chronic illness has caused and surprisingly enough it's one of the only encouraging side effects. I'm actually enjoying this self-discovery process, no matter how long it may take.

I'm learning how to walk like a new person, I'm learning to think like a new person, like a child I'm absorbing everything around me in a new and refreshing way so that I can understand myself and the "new" world that surrounds me. The world is new to me because I am not the same, my perception of people, places and events is completely different than what it might have been a year ago, and I am actually thankful for that.

Am I still stubborn and bluntly honest? Sure. Do I still hate doing laundry and dishes? Of course. But my perception of those things has been altered. My general approach to life is different. I cannot put it into words yet, for it is like the unborn child you haven't given a name, but I know that when this process is "complete" it will be a moment of miraculous wonder and awe.

I am moving forward on my own terms. I anticipate the future not with reckless anxiety but with a patient reserve for all the humbling and empowering moments that await. And not unexpectedly, I will cling to the past in order to see how much I've grown and understand that who I was then and who I become each day are linked by one thing only: my ability to accept their differences.

People only change when they've lost a part of themselves. I have lost myself almost completely and it has been perhaps the greatest gift life itself has ever given me.

Be still, be well

Monday, September 13, 2010

A Poem at 5am

You're probably thinking: This could be either really good or really bad. Well at this point I'M feeling like it just sort of "is."

I've received three publication rejection letters in less than two weeks. (Which I was actually ok with) But yesterday, the one that I really thought was the perfect fit said no. Not only did they say no, but they also said my characters were "too mean." I should seek peer revision. It's fine, I welcome criticism, but I guess it did bum me out a bit. (I will keep trying though)

Also, over the weekend I ran across some posts on a few Scleroderma sites that mentioned having to be on Cellcept (one of the meds I'm on) for life. I was quite astonished by these posts, since my doc has been pretty convincing about trying to get me off them. But everything I read said that when you go off them you relapse QUICKLY and when you try to get back on to stabilize they don't work as efficiently. Now I know that with scleroderma, every patient and every case and outcome is unique and different. But of course I can't help but worry and wonder: "will this happen to me?" Thinking about being on all these stupid meds for life is daunting not just because it's "for life" but because I want to have kids (eventually) and if I can't ever get off them, then I can't have kids.

So, being the investigative researcher I am, I asked around to see if other women had tried to get off cellcept and have babies and what they're experience was like. I received one positive response, and one really negative one. The negative lady told me she had a 3rd baby after being diagnosed, and now 20 years later she's still in horrible relapse. Says her third child doesn't know what it's like to have an active mom, she hates for him to see her sick all the time and she's made a lot of sacrifices. So, having read this at 4am today, feeling tired, annoyed by my insomnia, upset by my rejection letters, and just overall sore and fatigued, of course I began to cry. (And now I have a headache and a long day ahead)

Although I was upset for awhile, I recovered, and was actually inspired to write the following poem. Now, I am still going to do everything I can to try to have kids one day, but I know that there's a chance I may not be able to, so...that is what inspired this:

A Book & A Baby

Two dreams
a book
and a baby.
When the publishing world failed me
I tried to have a baby.
And I didn't think it was possible
But my uterus sent me a rejection letter.
And this is how it read:
Dear Conceiver,
We regret to inform you that
Your body needs too much revision.
Your lungs lack depth and sincerity
Your bones need creative precision.
Your muscles are anti-climactic
Your kidney's often seem static.
Although your mind has potential,
Your organs are too weak
And the overall tone of your skin is too rigid and meek.
The character of your joints are not round
The setting of your fallopian tubes too profound.
Your fatigue is an internal conflict too outdated,
And the irony of your hips is often understated.
We've considered your submission thoroughly
But your piece does not meet our needs at this time.
Good luck with reproduction,
Because WE cannot birth babies of your kind.

"Be still, be well."

Jas


Wednesday, September 8, 2010

Wine and Piece of Chocolate

I perhaps was in a not so good place last I wrote. Insomnia will do that to you I suppose. But today I am rejoicing. I am celebrating. I am calm.

I want to rejoice in the fact that I have all my limbs and organs virtually intact. I want to rejoice about the fact that my brain and my body are still whole. I want to rejoice because rejoice is a word that is not used often unless you're at chruch.

I am celebrating the fact that I have tried new things and had fun while doing them. (Using a cheese grater, swing dancing, visiting a new garden, writing a children's poem and many more) I am celebrating the fact that I finally feel successful at life. (I am meditating regulary, my house is clean, I take my meds everyday on time, I feel confident at work) And I am celebrating life.

I am calm because life is too short to be stressed. I am calm because it is what God wants me to be right now.

Everything is as it should be and my day is made complete with a glass of wine and a piece of chocolate.

Be still, and be well.

Thursday, September 2, 2010

Aside from the Fact...

"La carcajada de otra madrugada..." (The insane laughter of another dawn)

Yes, that is exactly what it feels like when I wake up in a cold sweat with uncontrollable tremors at 2, 3 and 4am almost every night. Anxiety throbbing in my chest, my insides oozing out of my pores and an earthquake running through my body. I try not to wake the hubby, but some nights it's inevitable. Even our plush, no move sleepfoam bed can't handle my shaking and Lupe awakens to comfort me.

I used to blame the anxiety on my old job. I quit that.

I used to blame the anxiety on a lack of exercise. I walk/run, zumba, swim and yoga.

I used to blame the anxiety on caffeine. I quit that. (Yes even chocolate, mostly)

I used to blame the anxiety on anxiety. I meditate 4-5 days a week.

Now, I know the anxiety must be the damn medicine. The doc has mentioned this to me before, I've always known it to be a side effect, but Jesus, it sure seems amplified these days. I sleep no more than 4-6 hours a night and am usually awakened by the sweat dripping down my face and my body rocking back and forth. This is, needless to say, miserable. I've also recently started suffering from vertigo. Complete loss of balance and the room spinning, while I'm in a freaking chair! So, yes, I will be calling the all-mighty rehumatalogist today....

Aside from the miserable side-effects I seem to be suffering, the new trabajo(job) is GREAT! I don't work more than five hours a day, planning usually doesn't take me more than 1 hour to complete, and neither does grading. I love being able to sit around (literally) and talk about books all day. Even if yes, it is sometimes to students who A) haven't read the material or B) couldn't care less about why John Steinbeck wrote The Pearl and what influence it has on their lives. It's still fun, and I'M excited and sometimes that even gets them a little excited.

Most of my students are weird. But in a good way, they all have really awesome quirks and funny senses of humor which I get a kick out of. The other English teachers on my team are cute older women who remind me of everything I wanted to be when I grew up. I'm sure they're all wondering what the hell I'M doing there, but they'll learn in due time. It's too soon to allow anyone to try and feel sorry for me yet. I feel like I need to prove myself first. (Flawed mentality, I know, but it ain't going away) It's a good gig and I'm really happy to be there.

So now you see, why I'm completely flustered by these mid-night anxiety attacks- makes NO sense!

I was going to go off on a tangent about pain-free days when I first started writing this, but that seems quite irrelevant now, after the night I had and will have to wait for another day. I will end on a positive note:

I submitted one of my children's book to a publisher (the one I'm REALLY hoping to get published by) so, wish me luck and we'll know in about a month.

"What would YOU attempt to do if you knew you could not fail?"

Jas

Friday, August 20, 2010

Elation & Jesus

It is 3am, I am up. I don't know if it's the new job jitters. The prednisone or the fact that my mind won't shut the hell up, but I'm awake. My first day on the new job went well yesterday. I'm super excited about my team (a much older, more experienced, easy going group of inspiring women), and I like the sense of urgency without panic that I get from everyone. I am looking forward to the school year. :)

Now, as many know, I am a spiritual if not religious person. I believe in God, or a higher being, positive and negative energy, Karma, inner peace and things like that. I'm really not the kind that speaks in tongues and had to find Jesus to be "born again." BUT, last night, after my walk/yoga/meditation session, I truly believe I had an "out-of-body-holy-ghost-the lord is inside me" moment. I don't know where it came from, why it happened or if maybe it was just a "happy" panic attack, but I felt something I have never felt before. It was like I couldn't breathe but was full of air, I felt an incredible sense of joy and yes I'd even dare say, pure ecstasy. I started crying, like tears of joy, I felt blessed, I thanked God over and over again for everything He has given me and I just felt an incredible sense of inner peace and calm. Something in my heart and mind reassured me (for the first time in the last three years) that "everything was going to be alright." That I was going to be alright, like that I was going to get through all of "this"(the sclero) and I never felt more sure of it before. It was truly an amazing moment, scary at first because I didn't know what was happening, but so wonderful once I knew what it all meant.

I can't say for sure who or what God is, or even what he/she wants from the world but I know there is something greater than me, than all this somewhere out there because feelings and moments like that don't just happen, they're meant to happen and they mean something.

There are a lot of uncertainties in my future. A lot of dark roads I don't know the end to, but I truly believe that I am finally at peace with that, and that I don't have to control it all, because I can't control it all. I can only control how I respond to whatever lies ahead, and though that may prove to be a challenge I am ready for it and I accept it.

(What happens to a dream deferred? It explodes, beautifully and it's ashes turn into something greater. It's the only way to survive in this world).

Sunday, August 15, 2010

New Things

For the last month I have been trying to make it a point to try at least one new thing a week. This has proven to help my boost my moods, self esteem and even fitness levels in some cases. I have tried everything from baking a chicken for the first time, Zumba, pole dancing, writing children's poetry and Tai Chi. I feel slightly accomplished at setting this goal and actually achieving it even if it is in the little things.

Most recently it has not been easy to find joy in these small victories because I received a phone call from the doc earlier this week that could have easily sent me into a pit of depression if I had let it. So doc says that my CK levels are still up despite the rigorous meds I'm on and despite my super sincere efforts to take ALL of them EVERYDAY. (In case you forgot or don't know, CK is an enzyme in your blood that usually gets elevated when you work out and then goes back to normal, in my case if the sclero is active then my CK levels are always elevated,elevated CK levels can lead to muscle weakness and eventually damage,(muscle damage is no good in case you're wondering) like imagine if you were a marathon runner your whole life- eventually it will catch up to you.)

SO... he wants to run more blood tests because he says that it could just be an abnormality and that the elevated CK levels aren't anything to worry about since they don't seem to be going down. (Sounds like good news, right?) WELL problem is not only does he want to do blood tests he also wants to perform another EMG (Electromyography). I have had one of those before..it is NOT fun, and I am NOT looking forward to it. This is what they do:
To perform intramuscular EMG, a needle electrode or a needle containing two fine-wire electrodes is inserted through the skin into the muscle tissue. A trained professional (such as a neurologist, physiatrist, or physical therapist observes the electrical activity while inserting the electrode. The insertional activity provides valuable information about the state of the muscle and its innervating nerve. Normal muscles at rest make certain, normal electrical sounds when the needle is inserted into them. Then the electrical activity when the muscle is at rest is studied. Abnormal spontaneous activity might indicate some nerve and/or muscle damage. Then the patient is asked to contract the muscle smoothly. The shape, size, and frequency of the resulting motor unit potentials are judged. Then the electrode is retracted a few millimeters, and again the activity is analyzed until at least 10–20 units have been collected.

In short: I'm struck with pins and needles in various muscles, as I lay on a cold table while strange people poke at me and say they're sorry for over an hour.
So you see how this could have upset me...and it did, for a short while. Luckily though...the biggest news of all, that same day I got the call from the doc, I was hired by a private school to teach English! I'm super excited about my new job and I'm looking forward to starting this Thursday. It is only part-time so no stress about getting tired or taking on too much. I will still have time to write, rest, work out and focus on bettering myself.

Although I am not excited about this upcoming exam, and I'm scared of the results (because if it turns out that I DO have muscle damage, and CK is NOT just being abnormal, then meds might have to increase, or stronger meds prescribed...booo) I am looking forward to all the new things I have yet to try , like meditation, African dance yoga (this friday), and baking fun, new gluten free sweets!

I know that if I can find pleasure in the simple things, it's possible for anyone.

"If there's one thing you should believe in, it should be yourself.." (Me, and I'm sure other famous people)

Tuesday, August 3, 2010

Pep Talks

I am not having a good day. It started off fine, I meditated, did some yoga, ate a really healthy breakfast and had a great rehearsal where I was able to move and act with ease, no pain no hard effort. Then, around noon, I had a breakdown. I cried and slept and ate a lot of junk food and still feel misearble.

I am tired of being in survival mode. I eat to feel ok. I workout to feel ok. I rest to feel ok. There needs to be something else. I don't want to be just ok. But maybe that's all there is right now. Maybe that should be enough.

It's hard for me to just sit. I am by nautre a busy body, idleness doesn't come easy for me, perhaps I just need to readjust my mentality and my expectations. I know this is a complete turnaround from my previous entry where I felt a purpose, hope and inspiration. But it happens when you live with a chronic illness. Some days are just better/worse than others.

I am convinced that I need to see a therapist or something to deal with what one of my friends calls this "something bigger than me." She says I am strong, and I am "big" but that scleroderma is bigger than me and I can't do it alone. I know she's right, I know that everyone who has ever told me that is right. But I have spent the last 12 years trying to become self-sufficient, so asking for help with my life is scary and foreign and contrary to everything I've been trying to establish for myself. But it's time. I know. This disease is bigger than me right now, and I can't go at it alone.

I need hope. I need strength. I need to not be afraid of the future anymore.

Saturday, July 31, 2010

Distractions

I think I have truly found what I was meant for. I always said that my dream job would be to read books aloud to children and be able to get paid for it and I think I've found out how. Aside from having to go back to school to become a librarian, I've decided to take a different route. I am writing children's books and submitting them for publication, in the hopes that I will get published and be able to go around to schools/libraries and read my "poignant" stories to little brown children all around the country. (High hopes, I know but maybe, just maybe...)

The discovery began when I opened a children's short story that I began over a year ago but never finished. I sat down to revise it and then just kept writing until the ending came. After that first moment the ideas just started flowing. Stories about immigrant children, stories about tropical fruits and their origins, stories about culture and family, friendships and fears. Stories based on my real life and those of my cousins and siblings. I enjoy this type of writing even more than poetry because it doesn't need to be pretentious or complicated. While my words and the ideas are complex, the story is simple and I know the will mean something to this special population that I adore.

The FaceBook challenge that I embarked on a week ago helped spur even more ideas and I just can't stop writing and thinking. It's great, I haven't felt this much passion and excitement about anything in awhile. I know in my heart of hearts that this is what I was meant to do (even if just for now- I believe we live our lives in phases and my dreams may change but this is what I want and need to do right now).

There is something deep inside me that tells me this is going to work out, and that I WILL get published. I'm super excited about the possibilities and know that all will go well.

Recently I have thought that perhaps these children's books are a mere distraction from the "real" project I am avoiding (the memoir about my diagnoses) but this kind of writing fulfills me and makes me happy. Perhaps I am not ready to face the daunting task of putting the last three years into words and metaphors for the rest of the world to judge but hiding behind cafeteria tales and sibling rivalries in order to help inspire young readers doesn't seem like such a bad bargain.

Maybe after a good run at the world of children's literature I'll be ready to tackle my inner demons, but for now I will continue to find inspiration in my cousin's pig tails and the mystery behind coconut milk.

Tuesday, July 27, 2010

Days 2 & 3

Okay, so Days 2 & 3 were quite different from the first and quite different from each other. Perhaps is was the change in scenery, perhaps it was my change in mood but this challenge was definitely not what I expected and perhaps a bit too ambitious, but fun none-the-less. So here is what occurred.

Day 2:

I realized that once you open up the flood gates of creativity it's AMAZING what just begins to flow! While Day one felt like pulling teeth and gave me a headache, Day 2 was just like non-stop creative mental vomit onto the page. If I took a nap, I'd wake up with twelve new ideas. If I saw a street sign that would spur five new book titles and on and on the day went. It was absolutely great. It's amazing how little of our brain we actually use but when you force/challenge yourself to use more of it, it is completely receptive and it's so ready to come alive after so many years of non-use. I was on a big high all day and these are the things I came up with. (Now are these all award-winning ideas? Of course not, but I can say it's more than what I've come up with in the last three years, and that's a great start!)

Carlos the collector

Flowers Bloom and Bridges Collapse
Point me in the direction of the sun and I will be reborn.

Marriage is about listening when you don't want to and laughing
because you have to.

Blood is a funny thing. It can tell you so much about a person. It can
control what you decide to do next. It can save your life. The wrong
kind can kill you.

Inspired by my friend Maria:
When struck by a crippling illness I for one am of the opinion that
words speak louder than actions because one cannot do much of anything
and we find strength in being able to speak out about our pain.

Title of my next chapbook: Volcanic Eruptions.

Title for memoir I may never finish: Lying Dormant

Where this all came from? Believing that while I may be still on the
outside deep within I am brewing words and thoughts that will soon
erupt and change everything i touch. And my ash will turn into
beautiful collectable rocks you will want to take home with you and
stare at everyday.

If you open your eyes long enough to see yourself you may be surprised
at everything you find.

----------------------

Now, Day 3 was NOT as creatively productive. I don't know if it was the weather (which threw my body into soreness, achyness and just an overall bad mood) or the fact that I'm in San Antonio visiting family and that consumed my day. BUT Day 3 of the challenge provided me with NO creative one-liners. And mind you, I DID attempt. I would look at my Iphone and think, and think and then get restless after about 30 seconds, so I'd avoid FB all together, put the phone down and go do something else. Something less mental.

Now, although I didn't have one liners I did spend the morning of Day 3 drafting my 3rd children's book. So perhaps that is where all my creative energies went. And you know, now that I think of it, maybe it was an exercise in growth. Because Day I had many short one liners and names and titles, as you can see by Day 2 I had longer thoughts, more complicated ideas, and on Day 3 I was able to write a book! (A short 3 page children's book) but a book none-the-less and I fleshed out one of the ideas I had on Day 1. So I guess I'm more successful than I was originally giving myself credit for! (Woo hoo, I love epiphanies at 9am) :)

Ok, so if you were skeptical of my challenge at first, now I am living proof of what channeling your Facebook efforts elsewhere can do for your creative exploits. So, give it a try, don't be afraid to fail because the worst that can happen is you'll have a few useless and few great ideas for that thing you've been putting off or too afraid to tackle.

Be Still and Be Well my friends! And don't forget to challenge yourself every once in awhile, you'll be amazed at what you can do.

Jas

Sunday, July 25, 2010

Day One Challenge

So, day one of the challenge came and went. I will say that I was about 90% successful. There were a few times when I checked FB without updating my status but didn't write or do anything before-hand so I feel like that was cheating a little. But for the most part, I forced myself to write down little tidbits of writing thoughts BEFORE updating my status all day. And sometimes, because it hurt my brain to keep thinking creatively so much I just decided not to post or write anything at all, so look at that!

I didn't realize that coming up with one-liners or character names or book/poem/story titles would be so mentally draining. I guess that's why we do FB instead, it's mindless "chatter." Who knew, that the person who DESPISES small talk, would be "small posting." Wow.

OH, and before I forget, something else that I found really rewarding when I couldn't think of anything even remotely creative to write before posting was this: Email, or text a friend/family member that you haven't talked to in a while. Just say hi, and tell them that you're thinking about them. It's about as mindless as FB but it actually means something and makes you and the other person feel good. (The only downside: the person calls you and you have to spend the next half hour updating them about your life. Which hasn't happened yet to me, but I can predict it will)

Ok well, without further adieu, below is the list of random things I came up with while redirecting my FB addiction. (I share this with you trustingly, please don't steal my ideas! But, I guess if you do, you probably wouldn't write the story/poem the same way I would so I guess it doesn't matter. And it's the risk I take when I publish things on the web anyway.)

Well, read on and enjoy! "You can't get anywhere until you take the first step."

Lucia learns to eat a mango.

Diegos dads:
1. Fireman
2. Police Man
3. Famous Super Star
4. Teacher
5. Doctor

Cocunut Water. Agua de Coco
1. Was there a hundred year rain?
2. Do seagulls fill the cocunuts with water every night?
3. Does the rising sun sweeten the water? Or what does?
4. Seagulls saving the water for when the ocean runs dry?

I need to find out the recipe for menudo.

Vanessa's Vestido

Diego Dosent Care
1. Numbers turn into robots
2. Words turn into spiders and snakes
3. Moving fast is slow motion for him
4. Repeat from adults: Diego Doesnt Care
5. When teacher finds his interest he does great.
What will make Diego care? Is he a hero? He teaches the class something.

I could write a memoir about my relationship with my hair. Hmm I like.

Memoirs about medicinal side effects.

The water heals me. It brings me back to life it inspires me to do
more. Be more. Water wants me to be as useful and needed as she is.

Bertolino Bakes A Cake

Bertolino Baila

Zooky Bedazzled

Poem idea: Sex With Marshall Mathers

Saturday, July 24, 2010

Facebook Junkie

Okay, so I am embarking on a new challenge. And I am asking all my readers (declared readers and anonymous readers) to do the same, especially those of you who like I, am a committed Facebook Junkie. Yes, there I said it, I am a FB junkie. The first step to recovery is admitting you have a problem right?

My challenge, for the next three days is this: Whenever you feel the urge to update your Facebook status, you do something else instead. For example, if you're a writer, you write down a great metaphorical sentence, the title to a book, a funny character name, anything simple. If you're an artist go add color to that painting you're working on, finish beading that necklace whatever, just do that thing INSTEAD of updating your FB status. Now, the tricky part, or maybe the fun part about it is that whatever you go and do has to take as little or as much time as it would for you to update your status. (But if it spurs to keep working, then hey who am I to stop you?) Now, if AFTER you've done that other thing you STILL feel the urge to post, then go right on ahead, but maybe, just maybe you won't anymore.

So, for the next three days I will blog daily to let you know the "little" things I've been able to accomplish by resisting/redirecting the urge to FaceBook.

So far I have done the following:

1. Read my father's revisions for my children's book
2. Come up with two titles for two more children's books I want to write.
3. Outlined another children's book I am going to work on this afternoon.

ALL this by simply redirecting my urge to facebook ONE time this morning after my walk. BUT, I must say that I did still FaceBook after completing these tasks, but that's okay because I accomplished more than I would have if I were not challenging myself.

So Please, readers of my blog, I urge to take the challenge with me. It's only for three days, see how it goes and don't be afraid to share with me and with others what you've been able to accomplish!

Be Still. Be Well.

Jas

Wednesday, July 21, 2010

The "Newness" of Being

Over the last three weeks I have experienced more, attempted more, lived more and laughed more than I have in the last three years combined. Perhaps it is because I have more time on my hands, perhaps it is because I am really giving time to the things I value in life as opposed to just saying I value them and not doing anything to show that.

Part of the simplification process that I started about a month ago asked me to list the five most important things in my life, and to only do things that fit into one of those categories. And about 90% of the time over the last month, I have done just that. (With the exception of house chores, but I don't think I could ever get rid of that part of my life...sigh...)

My priorities went like this:

1. Spend time with Lupe
2. Manage my health (eating right, working out, resting, resting, resting)
3. Spend time with family and friends.
4. Write (work on artistic projects)
5. Strengthen my spiritual life.

And, I think thus far I have done so many of those things that it really is improving my quality of life. I have seen wonderful plays with Lupe, friends and family, I have eaten at great healthy restaurants, I submitted a children's book and an article to be considered for publication, I was a part of the Word Around Poetry Tour, I try to meditate once a day, I took a freaking pole dancing class and I've helped raise money and awareness for the scleroderma foundation. I feel pretty damn good about myself. I only hope I can keep it up, once my bank account requires me to find a job.

At the end of the day we all have things we could improve about ourselves, but I have found, despite what many may inherently believe, that we should be proud of the things we were able to accomplish in a day and not harp on what we didn't or why we didn't. I'm all for trying to be a better person, but my existence cannot revolve around that, I believe that I have many great things to offer and if I just spent all my time worrying about what was wrong or not "perfect" then I wouldn't enjoy the good things I already have and can do well.

I am looking forward to a better year, to better days and hopefully to a healthier future. I am ready and willing to face the challenges that may arise in the process and I know, that no matter how tiring it may be, taking life one day at a time is all I can and want to do right now.

Tuesday, July 13, 2010

Flying

Propelling yourself under water is probably the closest any of us will ever get to flying. (Unless you're brave enough to throw yourself out of an airplane) There is a feeling of freedom, suspense and utter joy that I feel when I am swimming. It is the only time that my body feels "normal" and yet extra-ordinary at the same time. I feel no aches or pains, no limitations and no restrictions. My body can do almost anything under water. I jump, bounce, float, stretch and even run effortlessly. I feel, for those brief moments, like my old self and although it is a fleeting, bitter sweet moment, I try as often as I can to recreate them.

I swim at least three to four times a week. I would go every day but the meds caution me greatly to avoid the sun, even with sunscreen at SPF 80+ (which is like slathering on peanut butter). So, I go to the pool either very early or very late and I run, and I bounce, and I float and I swim and I feel free. Afterwards I feel accomplished and genuinely content and alive. My lungs open up, my pores breathe and my skin is soft and malleable. My body becomes the complete anti-thesis of what has defined it for the last three years. In those sacred moments that I share with the water I do not have Scleroderma, and Scleroderma doesn't have me. I am simply a body submerged in water, a mind at ease, a heart at home, and a soul at peace.

"The sweet ain't as sweet without the sour." -Vanilla Sky

Wednesday, July 7, 2010

New Poetry

I'm on a writing frenzy! Here's a new piece I wrote and will definitely be showcasing at next week's WAT tour, starting this coming Sunday at Bohemeos! 8pm!
(inspired by the work of Marlon Lizama- Invisible Americano)

Invisible Invalid

Jasminne Mendez

There are 3 words and one card

That will separate you from them

And one job

And no deductible

Means they have cancer/or they have AIDS/or they have lupus

But they can’t get treatment

Because no job

Means no benefits

And they become invisible.

And those three words that changed their lives

Don’t change the facts

That no doctor will see them

No hospital will treat them

And they can’t get medication

Unless they’re willing to pay out of pocket

For overpriced, name brand generic drugs with deadly side effects.

It’s the single black mother who woke

With a butterfly rash on her face one day in May

And suddenly needs a heart transplant.

You don’t see her because she hides behind her visor

As you remind her that she forgot your fries

And she patiently sighs and averts your eyes.

And that one job

With no benefits

Means she won’t get treatment

And yeah, she just might die.

And it’s the 45 year old non-smoker

Divorcee with a tumor in his lungs

That was let go of his power plant job last month

And can barely afford his rent working part-time

As a janitor cause every last dime has been spent

On herbs and tea that promise to heal and not steal his money.

And he coughs, as you step around his caution wet floor sign

And he holds his chest and prays it’s benign.

But you don’t see him

And doctors won’t see him

And one card and three words separate you from him.

And it’s somebody’s undocumented grandmother

You found convulsing on your newly mopped floor

Because the insulin she had to buy across the border wasn’t made right

And she’s slowly losing her sight

And now you only see her because you have to find a new house keeper

And she begs you not to call 911

Because she couldn’t afford the bill with what you pay her.

And no job

Means no benefits

And one card

And three words

Keep them invisible

And make them invalid

Because they can’t get treatment

And now, you have leukemia

And you have diabetes

And you have MS

But you can’t get treatment

Because you don’t have benefits

Because you have a disease that causes dis-ease

In a company that doesn’t want you healthy

If I keeps them from being wealthy.

And the blue, united, health care cross shield of texas

Doesn’t know you

And the doctor won’t see you

If your’re self pay

And the pharmacy can’t give you anything

To make the pain go away

And all you want is a job

Or an answer

Or a pill

Or an empathetic gesture of understanding

But that one card

And that one job

And those three words

Became

The pre-existing condition

In a pre-existing system

That seeks

To keep you

Invisible.

Monday, July 5, 2010

What's Next

It's only day three of my "new" simpler "freer" life and I'm already feel better, more alive, happier. Although I know I have a long road ahead to actual "remission" I believe I am headed in the right direction. I'm eating cleaner (mainly fruits, veggies, lots of water etc.), I am committing to water aerobics and power walking and daily meditation (to hopefully find peace with it all). This is what July is for. They say it takes 21 days or 3 weeks for new habits to stick or old ones to die..so...bring it on. I look forward to seeing where I am in August and what I will be looking forward to then.

For those who are curious and want to know: Yes, I will be looking for a part-time job. What that may look like, I'm not sure but my mind and body need a break so I promise you it won't be anything physically taxing or highly demanding of my intellect. ( I want to leave my brain for my writing and creative projects) Yes, I will still have health insurance thanks to my wonderful husband who is sacrificing a great deal to allow me to take this time off. No, I will not start taking pictures of utter randomness and posting it on facebook just because I have extra free time. BUT I may be blogging more often. :)

So, with all that said and beginning to get done I am excited about all the possibilities and options that lie ahead. Although scary at times, I am trying to learn to live in the moment and be thankful for all the small victories (like eating fruits today, or cleaning out closets) and patient with myself when small failures threaten to become overwhelming.


Thursday, July 1, 2010

Thoughts on a Thursday

I should be getting ready for work, but instead I'm blogging. I know you can tell where my priorities lie. I am so exhausted. But that is not new, however I do feel like once this week is over I am going to crash and burn for a few days, between packing my room, field trips, projects, crazy kids, confused coworkers, rain, the Alley theatre, a depleting savings account and the fear of being unemployed for longer than a few months I am completely spent.

My quick thursday morning thoughts for today include the following:

1. Why do I feel so sad?

2. Just because you're good at something does that mean you have to do it?

3. Is it wrong of me to be the complete opposite of the rest of the world and NOT want to make money out of one of my hobbies? (I don't want the thing I love to be my work)

4. I expected life to be getting better, that doesn't really seem to be happening

5. Simplifying requires a lot more work than just throwing things away....

6. I wish I could be more poetic this morning, but alas, it is time to go to work...again...

Goodbye, God bless

Jas

Saturday, June 26, 2010

Simplicity Part Dos

I am continuing to simplify my life because things were getting too complicated. People sometimes say that they feel like they have the weight of the world on their shoulders, well that wasn't quite me. I had only the weight of my world on my shoulders and that world was getting too big. My world consisted of a 50 hour work week, chronic pain, managing pain, 12 pills a day, insomnia, bills, laundry, dishes, insomnia, more work, more pain, less sleep, heart burn, marriage, bills..... and as the saying goes "something had to give."

So, over the last week I:
1. Gave away shoes, purses, clothes and "stuff" to Goodwill
2. Gave my resignation (yep, my dream job is no more)
3. Gave in to facing my fears.

You see, my prayers were answered and they have been answered I was just trying to drown out the sounds because I was too afraid to face the reality of where my life was headed. I need to focus on me, and really mean it, I can't keep half assing this existence anymore. I need to eat better, sleep better, work out more, take my pills every day, at the right time and really I just need to REST. I have been on auto pilot since 13, working towards achieving every dream I had, and 12 years later I can say with great pride that with the exception of a Tony and a published book, I have achieved all those dreams and more. And so now...it is time...to rest.

God has granted me the serenity to accept the fact that a)I have Scleroderma b)I cannot do all the things I used to do c)I have to take my medicine
He has granted me the courage to a)change my lifestyle b) change my habits c)change my dreams and expectations
And I am more than thankful for the wisdom He has provided me with to make these life altering decisions.

Though I am still uncertain of what my immediate future holds, I know that in the end I will be better for it. My spirit will be stronger, my body will be healthier and my mind will finally be at peace, and perhaps with a little faith and a little love, acceptance will be something I get to choose everyday and not just some days.

"I don't regret the things I did, but those I didn't do."

Sunday, June 20, 2010

Simplicity

I have decided to simplify my life one small step, or maybe one big step (on some days) at a time. It has taken some soul searching, some praying, some well-needed shoulders to cry on, a mother's wise words and husband's loving smile (oh and a self-help book) to allow me to come to this much needed conclusion. There are things I'm going to start doing that I should have done over a year ago, but was too afraid to. I am not afraid anymore. I am simply in control.

Look forward to reading more in about two weeks when things will really have begun to "get simpler."

(i love u all)

Jas

Thursday, June 17, 2010

If I Could Fall Asleep

June is National Scleroderma Awareness Month.....yay....I only wish you could hear the excitement in my voice right now...o wait...it doesn't exist... sorry to be cynical...again.. I was excited about that fact..last night...before I tried to fall asleep, and then haven't been able to for the past six hours because of scleroderma.

Yes, I'm sure you will say, but Jasminne, it's the MEDS that cause your insommia. And like a mad angry black woman (which dan would argue that I am) I would bitch slap you and say, "But I wouldn't be on the meds if I didn't have scleroderma in the first place!"

No don't worry, I wouldn't actually bitch slap anyone, don't know that I'd have the energy to. And I love you all too dearly anyway.

Anywho, I haven't slept but maybe four hours over the last week, I think I should be delusional at this point, but somehow I'm not. I'm just more awake than ever. So just for kicks...

If I could sleep I would....
1. Dream about eating all things I can't because of the heart burn
2. Cuddle up to my hubby
3. Steal all the covers
4. Not wake up for like 12 hours
5. Snore just because
6. Feel better when I woke up

Have a blessed day everyone, I'm going to the dark room in my house to stare at a wall and see if sleep decides to catch up with me....(I guess I could work on my memoir, but that would just be pretentious)

Jas

Monday, June 14, 2010

So Much for Acceptance

So, the only that's "changing" is my pill dosage....AGAIN.... This is not going to be a positive entry, so if that's what you read for, close the window now.

If you read a few posts ago where I said things were "looking up" and that doc said he was seeing improvements...well you can feel free erase that from your memory. Blood tests show something different. My CK levels are up, which means muscles are damaging at a faster rate, like before, when we thought the process had slowed, but apparently not. Guess that would explain all the aches and pains I've been having, though yet again, denial set in and I tried to blame it on overworking myself.

With CK levels up, it means doc wants me to up dosage on steroid (Prednisone) AND on Cellcept, like A LOT. 20mg of Pred (I'm at 10 right now) and 2000mg of Cellcept (1000 right now). So much for prepping body for babies in 2011. Looks like Lupe's going to have to suck it up and be a 40 year old man with a 5 year old. (Sorry hun)

So, back to 12+ pills a day. I really don't know how I'm going to do this, I barely manage the 7 first thing in the morning. It's really not feasible to stop teaching to pop a few pills, and I can't take them on an empty stomach so I'll always have to wait till lunch at least. Ughh, I just feel like a failure. I know popping pills seems like such an easy thing to do, but along with everything else...like do I SERIOUSLY need another reminder that I'm sick!? (Told you I wasn't going to be positive)

I'm not in acceptance mode today, or denial, I'm in anger and depression. And unfortunately there's not enough wine or cupcakes or pizza in this world that could make it any better. I have failed myself. I was supposed to be off the prednisone by this time, I set a goal, I was trying to reach that goal, and somehow I've only fallen backwards. My outside appearance is defying what's happening on the inside, and no one, not even me realizes it.

Back to the drawing board. Maybe if I could afford a housekeeper or a live-in nurse or a personal assisstant I'd be better at this whole taking care of myself thing, because I'm not super woman, I need some things off my plate. Someone to at least do laundry so I can cook, or someone to organize my pills for me so I can just take them, or someone to walk up to me with a bottle of water a sandwhich and my pill box so I can remember to take them, or someone to cook for me. This is all just too overwhelming. Back to square one, back to feeling miserable side effects, being terrified of the sun, anxiety, insomnia and now, more than ever frustration at feeling completely and utterly like a failure.

Maybe something will change, and I'll feel better next post. But until then, it's popping pills and sleeping till my next doctor's visit in 6weeks, to get more blood drawn to see if I've gotten any "better."

Sunday, June 13, 2010

I can see clearly now...

The rain is gone...it's gonna be a bright, bright and sun shiney day!

First off, I want to thank ALL my FRIENDS who came out to my one year wedding anniversary last night and to all those that couldn't make it but sent their well wishes. I know my last post was about disappointment and anger towards "people" who I could no longer consider friends and that I had my faith in family alone. BUT, thanks to my FRIEND Dan, I know now I was mistaken. He went above and beyond his call of "back up husband" duty to make sure my gift to Lupe was a surprise. So Thanks Dan!

I also wanted to thank CE, JU and JS for being honest about the fact they read my blog! And asking honest questions to really find out how I'm doing and offering to help me with whatever, whenever. So, wow, thanks guys! I now realize that more people read this thing than they may admit to, but I appreciate everyone's continued support and love.

I have some possible life-changing events coming up in my very near future and I now feel confident and happy that I'll have the friends and family there to help guide and support me through the process.

My first year of marriage was trying. Lupe and I experienced a lifetime of events in as little as 12 months and if you don't believe me just read the list below and I think you'll agree.

Our Year in Summation:

1. Married (how wonderful)
2. Lupe starts new job (in summer...stressful)
3. Honeymoon (first out of country vacation...how fun...we thought)
4. Thunderclap headache- Jasminne hospitalized
5. Simultaneous to thunderclap-house renovations
6. Family drama (won't go into details here)
7. Uncle passes away from TB (very sad times)
8. First trip to Mexico to visit Lupe's extended family (first X-mas away from MY parents)
9. A couple of babies are born (James and Gwen/Alvaro and Michelle/Emily and Bill)
10. Lupe & Jas get told can't have babies now (how sad, but probably for the best)
11. Lupe's Uncle and Cousin pass away (too many funerals... :( )
12. Jenni (my sis) graduates college!
13. Lupe gets fired.
14. Lupe gets new job. (Loves it too!)
15. Celebrate one year anniversary(eat old cake- that was damn good!)

Add a couple of traffic tickets, flat tires, power outtages, loads and loads of laundry and dishes, Lupe's eye stye, over 200 pills taken by me, a pregnancy scare and spending way too much money on dining out and I think we've shared a lifetime of experiences.

Be well and be still!

Thursday, June 10, 2010

Cement

"Rage weighs more than cement"-Shakira

Last week I was very angry. No, not when I went to wonderful Odessa, but shortly thereafter. So I guess "earlier this week." I had a heart full of resentment and anger for a group of people that had broken A LOT of promises to me. I resented them, I felt frustrated at not being able to do anything about it and I let it affect my overall mood and happiness level.

Over the last two days or so, I have moved past all that. Feeling anger and resentment inside is not healthy, physically, spiritually or emotionally. It, like the quote says, bogs you down, weighs on your heart and can eventually consume and harden you. No one has the right to do that to me, intentionally or unintentionally. I have let it go. I may not ever be able to trust these people again, our relationship has been scarred and I really don't know what the future holds but I know that I have accepted what has happened and I am moving on.

It's funny to realize that people whom you once looked up to and thought so highly of can come crashing down without even meaning to. I used to be very worried about disappointing others, but I've realized that being disappointed is even worse.

My husband often doesn't relate to me because I don't make a lot of friends, and I don't get close to people. I was raised a military brat, I lost friends constantly and throughout my life "friends" have severely disappointed me. I tell him I can only count on family (even though they have a tendency to disappoint me too) and that friends come and go. He completely disagrees, for him, his friends are everything. But for me, they're just people. And in our lives we will interact with and meet A LOT of "just people." I cannot put my faith in people that will only break promises, lie, and disappoint. I'm going to stick with family, because if they do any of those things, I know that the day I'm strapped to an oxygen tank and a dialysis machine they will come give me a sponge bath, wipe my forehead and say a prayer. With friends, well with friends, you are sitting at a poker table hoping that no one is bluffing.


Saturday, June 5, 2010

Cause You Gotta Have Faith...

Didn't I say things were getting better, looking up, opening windows blah blah blah... well they certainly are and the past few days have been a testament to that. As many of my close friends (all of you wonderful people on Facebook) already know, I have spent the last two days in little ole' Odessa, TX being a part of the first ever public reading of my "semi-autobiographical" play: Chronic Brevity. (Yes, the blog is named after the play, so you can guess what the play is about) :)
I was contacted on Tuesday morning by the artistic director of The Old Globe of the southwest saying that they had selected my script for their New Plays/New Players festival and if I could come out on short notice. And of course, without hesitation I booked a flight, and a hotel and by Thursday afternoon at 1pm I was in Odessa freaking Texas! Lupe came with me of course and we went to the rehearsal Thursday night, ate wonderful food at a restaurant called Carino's ($2 Sangrias!!), saw Stonehenge replica statues on Friday day, had horrible food at a fast food joint called Taco Villa (Never go there!), I worked out to blow off some nervous energy and then we went to the reading Friday night. It was an AMAZING experience to see and hear other people reading MY words out loud, with emotion, enthusiasm and energy. Nothing compares!

And may I say that the actors chosen to read the play were PHENOMENAL, and if you know me, you know that's a HUGE compliment because I'm extremely particular about whom and praise, especially when it comes to acting. So THANK YOU, THANK YOU, THANK YOU Old Globe of the southwest for really respecting my work and taking a risk! (And yes, it is called the Old Globe because it is a replica of the real Old Glob Theatre in England, and this one is just as beautiful...and OH the ACOUSTICS!)

Ok, so enough bragging and vomit inducing joy, I just want to share that I truly believe this play will accomplish great things in the future. I hope to bring awareness, understanding, compassion and hope to the subject of Scleroderma and it's patients, family members of patients and the general public. I received many compliments last night, great feedback on how to improve it and I know I touched a few lives because several people came up to me afterwards and began sharing their own stories of illness and affliction.

The past few days will surely be remembered in my heart as an emotional high and in my mind as a true artistic dream finally achieved. The play still has a long way to go, and this will surely not be the only reading of this piece especially now that I know the potential it has and the response that it received. I must go forward with this play if not for myself, but for all those who are too afraid to speak up and speak out, and because like I told my wonderful hubby the other night: "It's sad that erectile dysfunction gets more press than scleroderma." I hope to change that in my own small way.

Below is a super short video clip of last night's reading and the actual monologue. (If you want more, you'll have to come to the next reading or wait for it on Broadway!)- Hey a girl can dream can't she? :)

SCENE 1

(There is only a hospital bed on stage which is not lit at this point. Spotlight only on Lara who is standing CS, looking around the room she begins. Talking to audience.)

Lara: Brevity is the soul of wit. Profound huh? Yeah, too bad I didn’t think of it. Well, although I’m not very witty, I will try to be brief. Vivian Bearing died of Stage four ovarian cancer. Vivian and I are alike in a lot of ways. We like literature, we are both teachers, we are both characters in a play and I, like Vivian am in stage four, not of ovarian cancer but of something else altogether. However, unlike Vivian, I will not die.

So, ok, here we go: Stage 1, Chronic. Chronic means it is ALWAYS there and it’s ALWAYS going to be there. Stage 2: Auto-immune, auto-immune means my immune system is raping me, simple enough right? Stage 3: Fatigue, fatigue is what happens next.

Tuesday, June 1, 2010

Looking Forward

So I went to the doc a week and half ago and it was probably the best visit I've had in over three years. He ran the usual tests but finally was able to say "You're looking much better, I see that things are improving, I'm glad you're doing well."

I was able to take a sigh of relief for once and leave the doc's office feeling positive and hopeful as opposed to morbidly confused and upset.

On the downside, there is the fact that I have to increase one of my meds (the Cellcept) if I ever hope to decrease another (the prednisone). Reason it's a downside?

Cellcept: an oral medication given usually to patients who have recieved an organ transplant. Cellcept side effects- diarreah, constipation, anxiety, sleeplessness, fatigue, dizziness and it has strong label to: A)avoid prolonged exposure to the sun because likelihood of skin cancer increases greatly while on this medication and B)use two types of contraceptives while on this medication because "YOU DO NOT WANT TO BECOME PREGNANT WHILE ON THIS DRUG."

BUT being on prednisone (a corticosteriod) is absolutely no fun either. 1. I've gained 10lbs while on it, 2. increased risk of developing cataracts and diabetes later on, 3. weaning off it is a PAIN (depression, suicidal thoughts etc.)

SO, I'm desperate to get off the pred, but kinda bummed that by increasing the Cellcept I'll have to wait even longer to have a beautiful brown Domexican. Oh well, se la vi, I suppose. I'll just have to be patient and enjoy the health and peace of my mind and spirit that God has been so gracious to give me these last few weeks and look forward to an even better year.

I told Lupe the other day, that I think we are finally heading into a time of happiness and well deserved peace. Spending time with friends and family over the last few days has made us feel good and has brought us closer together, so as we move ahead into our second year of marriage, I want to thank God for the trials and tribulations he set forth during our first year so we could really appreciate the good times that lie ahead. I am thankful for my friends and our parents that stood by us ready to lend a helping hand during everything that could and did go wrong. (Death, sickness, surgeries, funerals, cars, homes, work everything)

We leave that all behind now, closing doors and opening big, bright windows which will finally let the sunshine in.

"I may not have gone where I intended to go, but I think I am where I was intended to be."

Thursday, May 27, 2010

Am I Jaded?

Death is a part of life. I've seen a lot of death this year and I think it's made me reconsider life. What I mean by that is, I need to take it easier. What are we all stressed about? Like REALLY? The end is the same for all of us, so what are we really freaking out about? I just want to be happy. I wanna have some cute babies. I want to create some art. And then, I want to die. And guess what? The world will continue on without me, and that's ok because it's supposed to. I'm not Shakespeare, and I have no desire to be. I just want to enjoy my brief moment in time and to hell with the rest of it.

Does this mean I'm jaded? If I take life too seriously, is that not jaded too? People have died all around me this year, at work, in my family, friends, friends of friends etc. And I'm still breathing, working and living and so is everyone else around me. So I ask myself now: what am I working so hard to achieve? If the end is the same for all of us?

Am I jaded?

Or am I finally beginning to understand...

Wednesday, May 26, 2010

Love is not a victory march

"I think I can, I think I can, I think I can..."

The first step to being successful (at anything) is to begin loving yourself.
If you don't like who you are or the things you do, then you will never succeed (at anything). You will constantly judge yourself, be too hard on yourself and not give yourself enough credit for the things you do right or well. I have learned this, the hard way over the last two years. With scleroderma, to love yourself or not love yourself, really isn't an option. The minute you stop loving yourself, stop taking care of yourself, that's when the condition threatens to get worse, and therefore, it is NOT an option.

For me, loving myself means taking time off when I need it, working out when I feel up to it, eating better (though that's been hard), sleeping (alot) and being proud of all the little things I'm able to take care of on a day to day basis.

Have I had to let go of many of the things the "old me" used to do? Of course, but that's all part of the process. I have also learned to do things for me, not for others. In the sense that I don't have to please anybody, nobody has to give me a pat on the back and say "good job" for me to believe that I am truly doing a "good job." I don't need that anymore because I believe in me and the great future that lies ahead no matter what I choose to do or not do.

I thought that Scleroderma had robbed me of my dreams, and I still feel that some of them may not come to fruition, but my success as a human being is not dependent on that anymore. Dreams are dreams for a reason, they give me something to reach for, something to look forward to and my success is based not having achieved those dreams, but on the effort and hope I give and have to at least TRY and make them happen. (Can I get a Hallelujah?)

"If the road is rough/And the track is tough/Thinking you can/just ain't enough."
-Shel Silverstein

Friday, May 21, 2010

Trying to Breathe


I. am in. a constant. state. of. anxiety.

I couldn't even begin to tell you why. It may be the caffeine I've been drinking, stress at work or a combination of both. I'm not really sure, but this past week I've felt like I can't breathe and I'm constantly trying to catch my breath just feel less jittery.

And I'm having nightmares too. Really strange ones about running, and over eating, and yelling at students. Ughh, even my dreams are stressful!

Maybe all of the fears I've been suppressing are surfacing and God is telling me to deal with them. Whatever it is, it's also causing A LOT of digestion problems. (And that's all I'll say about that. :) )

And here's a poem for your thoughts. May you have a belssed Friday night and in spirit, join me for a glass of wine and some down time with a loved a one. (Be still and be well)

The Justification for Infidelity is Always a Lie

I’m drowning.

This city is sucking me up.

I’m being choked by

Desire, greed, anticipation and lust.

I can’t scream.

I’m barley clawing my way around.

I want to smoke, drink and love

At leisure.

But I’m stuck.

Flipping and wigging out.

There’s a burst of sound.

An explosion of regret

That lingers in the air

As an action takes the place

Of a moral.

And I forget yet again,

What it is I’m doing.



Wednesday, May 19, 2010

People

I have suddenly come to the realization that there are essentially only three kinds of people in the world.
1) Those that want to change themselves.
2) Those that want to change the world.
3) Those that want to change lives.

I believe, that for better or worse I fall into the third category. I've discussed this somewhat before, I like to serve others, hence the reason I am a teacher. But I also know and realize now that category 1 and category 2 are much more difficult than number 3 believe it or not.

Having spent the last three years in the classroom I know that changing a life can be as simple as a hand on a shoulder, a smile at the beginning or end of a day, a truthful:"I understand," or the introduction to a book or author that speaks to a child.

One day, four years ago, as I was leaving a poetry reading (one of the most memorable moments of my life) that featured African American, Hispanic and Jewish poets from around the city at the Holocaust Museum of Houston, a young black girl approached me and changed MY life in an instant as much as I had just changed hers when she said: "You were like amazing, and when I grow up, I want to do that, I want to be like you, I want to do what you just did cause it was so awesome."

I knew then, that I had accomplished even more than what I ever set out to and I still do on an almost daily basis. Do my students tell me that I've changed their lives? No. Do my students show how much they appreciate what I do? No. But do I really need them to? No, surprisingly not. I wake up for them every morning. I play volleyball and run laps with them even though I regret it later because those simple gestures could be a life changing moment for them or for me, and I'm willing to make those minor sacrifices.

I don't think anyone can single handedly change the world or change themselves for that matter. It takes people, like the domino effect, one touching the next and the next and the next until you've all fallen, hopefully into something wonderful, something "awe-some," something eternal and beautiful.

I am on a mission, a greater mission than myself and I have to do what I have to do to reach it. Will you join me?

Sunday, May 16, 2010

I. Hate. This.

Have you ever gone to the gym and did a full body workout? Then proceeded to run a marathon followed by a couple of laps in the pool? My guess is probably not, but if you have, then I tip my hat to you, because you know what it feels like to be me all day, almost everyday. I have never done any of those things either, but with Scleroderma, it sure as hell feels like.

I have muscles in my body that ache, that I didn't even know existed. I ran out of my pain meds yesterday and didn't get to the pharmacy in time today so I'm in a lot of pain, all over. Not in enough pain to not be able to do things (I was able to do like four loads of laundry...woohoo) but just enough pain to piss me off and make me depressed. My knees are acting funny, my fingers hurt which they hadn't in like almost over a year, and I got really tired walking from the front door to the car earlier today. Blah.

Looks like I should just get over the idea of going into remission anytime soon if all the pain and discomfort comes back after just one day of no meds. GRRR...so frustrating. I'm sure some of the stress from work and personal life don't help my cause either but I really wish I could count on SOMETHING to be constant and dependable. (sigh) No more bitching, it is what it is.

I ask for Serenity. Courage. And wisdom. I can't change the fact that I have Scleroderma, but I CAN change how I feel about it and how I deal with it.

I feel stronger inside already by sharing my stories and my poetry. I attended an arts show this weekend where I was able to read my poetry and even impacted some people so much they bought my poetry CD's and picture poetry. It felt good to put myself out there and take a risk like that, and I'm really glad people were able to appreciate it and relate to it. That alone made for a successful weekend, even if today I felt practically useless.

I do believe (even if falsely) that one day this will all be some distant memory that I can look back on and remember as a time of spiritual, mental, emotional and artistic growth. It is definitely shaping the woman I am to become I just hope that in the process it doesn't manage to consume me.

(Another version of "me")- excerpt from memoir:

PEEPING TOMS

There is a woman who opens her drapes every morning to let the sunshine in. She unlocks her back door and opens it to hear the street sounds and feel the breeze on her unwashed olive brown face. Her hair is always a mess, usually a large afro that could be sexy if society allowed it to be. She always smiles at the trees and looks around outside hoping someone will notice her. She leaves her drapes open almost all day, even when it’s cloudy. Her silhouette passes by the back door ever so often, and she pauses momentarily by the window, takes a peep and truly believes that someone is looking in on her. She smiles at the possibility of being watched. Most days, when she showers, she forgets her towel in the other room and has to run across the open window in the nude. This daily routine excites her and she is sure that at least once, someone has caught a glimpse of her breasts. She always runs back across the room, laughing, with a towel covering only a portion of her body, on purpose. When she finally returns to the window clean and acceptable, she has a conversation with the wind and sighs, unsure of where the day will take her. She doesn’t know yet if she will drink coffee this morning or eat an apple instead, but she knows she has a choice. In truth this woman is lonely, but this woman is beautiful, and this woman is free. On Tuesdays, this woman is me.

Thursday, May 13, 2010

The Road _________ Traveled By

My students performed this evening. And every time any of them do, I always get butterflies in my stomach and I remember why it is that I do what I do. I am proud of all of their accomplishments no matter how stressful it was to get them there, because deep down I know they'll remember it for a lifetime.

These feelings are what help get me up in the morning and keep me going through the day. Doing things (especially art) for others is what I live for, it's why I started this blog, so others could learn through my writing, my poetry and my art. Although it's all sometimes hard to manage, my body aches and I get tired really easily I know that in the end, (whether it's my end or theirs) it will have meant something and will have made a difference.

Even with all this positivity, I have found myself at a crossroads. I love what I do, but I also love who I am. And I cannot continue to be who I am successfully if I continue to exhaust myself doing what I love to do. In other words, if I don't slow down soon, it might all come to a crashing hault. I have to take care of myself or I won't be around to help others, but sometimes, helping myself is draining, hard and honestly quite depressing. I ignore me because others bring me more joy.

I have big hopes, big dreams and an unsure future ahead, I am always asking myself: do I make the most of everyday because one day it won't be this easy? Or do I stop and smell the daisies and the roses because it really is that easy?

An excerpt from my memoir:

Sandra says she only writes on the days she doesn’t put on shoes.

Sandra also says that art should save lives.

I am therefore caught in a paradox.

I must wear shoes in order to go to work, to pay my bills and to feed myself. I am a teacher, I teach theatre and I teach hope.

I don’t know if I have saved any lives yet in my theatre class, but I do know that I have helped change some.

On the other hand, if I gave up my day job to write like Sandra, one day, maybe my written words will save a life.

It is time for me to decide what is more important: wearing shoes or saving lives?