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 is 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


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)


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 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)


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 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'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 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


"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? :)


(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."