Tuesday, August 21, 2012

Update!

Hello lovely readers!

It's been a while since I've had a health update, which is a bit ironic since it's the reason I've started this blog. But in a way, I love that it has become something so different than what I originally thought!

Anywhos. School has started up again and I have begun my last semester!!! It is surreal on twenty different levels, and super hard to believe I'm about to graduate! Still awaiting news on grad school....

And I have begun this last semester like a true slacker. I missed all my classes today for my neurologist appointment, which is bittersweet. Getting this appointment (which I made months ago) was a true blessing, and I'd rather miss the first day than a day close to finals when it's crucial I need to be in class, but I really like the first day! Getting to hear about the courses, the expectations for the semester, sometimes meeting new professors, is all part of the "first day" experience and I missed out on it! HOWEVER...the news I received at the doctor far outweighs my disappointment of missing the first day...

So the neurologist I went to see was new. He was recommended to me by my regular neurologist (who is pediatric, this one being an adult) to hopefully offer a fresh perspective, and to have someone I can fall back on when I go through random episodes and flares up. He recommended that I have a sleep study done, which now upon thinking about it, not sure why we haven't asked about that sooner. I hardly ever sleep, and am completely exhausted all the time which really just makes everything worse. So hopefully that will get scheduled soon, and they maybe find something!! I'm also taking a new type of medicine (yet again) to see if it helps with pain management. Here's praying it works.

BUT! The BIG news is that he said I am strong, doing well, and at this point am kind of static in progression. Which means there isn't much data at the moment showing him that I'm getting worse!!!! SUCHHHHH a blessing and a weight off to know I'm not progressing as much as we thought.

All in all, it was a fun little day trip for mom and I, and I am really excited about working with this doctor in the future and seeing what God has in store for me.

Thursday, August 16, 2012

Even if.

Anyone who knows me well knows that I LOVE music. I love discovering new artists, or just listening, or playing. There's something so incredible about songs and their ability to take any emotion or situation and put it into a song, sometimes even when you can't find the proper words yourself. And it's an entirely different experience when you're going through something and "that" song comes on the radio or comes across your path that describes the situation perfectly, or its a message you needed to hear. One of these songs for me lately is the newest single from Kutless called "Even if".

This song basically describes my life, and I felt like sharing it, because I feel it describes almost everyone's life at some point, whether it be in the same way as mine or differently. The premise of the song is that even if healing doesn't come, God is still God and He is still faithful. For me, this song takes on a very literal meaning. I battle everyday with an incurable disease that I want to be healed from. But that isn't in God's timing for me right now, and hasn't in my 22 years thus far. But even if I go to my grave battling this disease, God is still faithful and hears my prayers. He still holds my life in His hand and is watching out for me, letting His plan unfold as I live each day.

This song doesn't have to be about physical healing, it could be emotional or spiritual. That friendship that burned you, the relationship that didn't work out, the loss of a life close to you....it hurts. Life hurts. But even if the healing doesn't come right away, or when we think it needs to...God is still faithful. It's hard sometimes to remember that during a trial, because we so often turn and think "If God is so great and faithful, why is He allowing this suffering?" It's all in His plan. We may not see the big picture right now, but I absolutely believe that every trial and tribulation, in addition to every celebration and smile, is a part of His glorious plan that is being carried out.

So today, even if the healing doesn't come....remember He is still faithful.


Watch the video here!