Hello Again

"I will get down on my knees...and I will pray" -Jewel

It's been awhile...I haven't been as consistent with this anymore as I'd like to be. Suppose that could be a good thing though. It means life is calm at the moment, which is always nice. So as usual, in an effort to be brief here is an update.

1. I'm still working out, pretty hardcore actually. (lots of Zumba and jogging!)

2. I'm very cold- which triggers the Raynaud's, which means moving my hands and doing just about anything becomes impossible. (trying to cope with the winter season, never fun)

3. I need new glasses.

4. Two doctor's appointments this week. A)consultation with OBGYN just to "see" B)Rehumy appointment on Fri for quarterly check-up and to officially determine if Lupe and I can start a family any time soon.

5. Work is still great, possibly a new opportunity to come in that department (I'll keep you posted)

6. I am at peace.

And I'm still working on becoming a better cook. I have had some successes and some terrible failures in that arena, but I'm glad that I'm still trying. (Not sure lupe is though...he's my taste tester)

I feel truly blessed these days, and truly believe that only better things lie ahead. Say a prayer for me and KEEP HOPE ALIVE! (I'm feeling silly)

Be still, be well.

Jas

Icing on the Cake

"You don't buy a cake to look at it. You buy it to eat it. So of course I want to have my cake and eat it too, you dumbass." - me

OMG! I can't believe that I have written since last year! (lol, lame I know). But seriously, it has been almost a month since I last posted...so sorry about that, the holidays sort of ransacked me and I didn't have five minutes to breathe. But, as of today, back to work, "back to life, back to reality."

If you've kept up with my blog since its inception you are well aware that 2010 was a very challenging, insightful, scary, exciting and pretty amazing year for me. From new jobs to new medicine and from old fears to reviving dead dreams. I have been on an emotional, physical and spiritual roller coaster that I could not have made it off of without my loved ones and of course God.

In 2011 I am looking forward to fun and hopefully more pleasant adventures, but to be honest I wouldn't replace anything that I went through. It all taught me many valuable lessons that I will take with me for the rest of my life. I learned that life balance is more important that money or "stuff." I realized that I can still do what I love without risking a healthy lifestyle. I learned that family comes first and that the mind is more powerful than most of us realize.

In 2011 I resolve to:

1. Become a healthier and better cook.

2. Not take myself so seriously.

3. Do more to get published.

4. Love my husband more and more.

5. Not be disappointed about things that are beyond my control.

In 2007, right before my official diagnoses, a young high school girl came up to me after a poetry reading I read at at the Holocaust Museum and said the following: "Wow, you were amazing. When I grow up I want to do that. I want to do what you just did." In that moment, as I remember it now, I believe that I said to myself that my life was complete. I had done more in those 3min on stage than I ever intended to. I had accomplished more in one evening than some will in a lifetime. It is perhaps then, that life, the greater good or just fate blessed me (and yes I mean blessed) with "the sclero."

You see, this very evening I realized that this illness has allowed me to see and enjoy the simpler things of life that so many of us take for granted. On that chilly night in February of 2007, I changed a life forever with my words, my greater purpose was fulfilled. And so, God, in all his wisdom is now allowing me to sit back, relax, and enjoy what I had been missing all along. Lightening on a rainy day in January, a juicy mango in June, birds flying above still waters, my own body waking up every day, miraculously. Since that moment (ironically at the Holocaust Museum), everything that I have had the priveledge (yes I mean that) of experiencing has just been icing on the (cup)cake.

Be still, be well.

Jas

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

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

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