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

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

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