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.


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:


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.


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.