Proverbs 16:9

Everyday I wear a silver, metal bracelet. You'll never see me out of my house without it on. It's my medical ID and so it has important information on it. Lately I've been looking at it every morning wondering if I even needed to wear it anymore, since I've almost gone a year without any real issues. Truth is I wear it more for myself than emergency personal. See I have Proverbs 16:9 engraved into it along with the name of my disease and contact info should anything happen to me. Proverbs 16:9 is one of my favorite verses because it reminds me that it's not my place to ask "Why?". Though I might set my heart on something and plan accordingly, God has the last say and will lead me as he sees fit. 

A man’s heart plans his way,
But the Lord directs his steps.

Proverbs 16:9  

I want to ask God "Why?" but I know there is no real point. It's not my responsibility to know why things happen, it is however my responsibility to be faithful and to continue putting one foot in front of the other. Besides knowing the why wouldn't make any of the challenges I face disappear. I stated in my last post that December would be a year since my last infusion and that I was looking forward to celebrating this. Guess God had other plans, which for the past 4 years has been the case pretty much all of the time. Three weeks ago I got the results back from my monthly blood work and my Bcells have reached 1%. I could say I'm disappointed or angry but that isn't true, probably because it really hasn't sunk in yet. Right now I'm waiting for the insurance company to approve 2 infusions of Rituxan before the end of the year. Even knowing this I don't think it will really hit me until I'm sitting in the chair getting the infusion. I know then that I'll be angry because I wanted so bad to be able to reach the one year mark. I'm sure that I'll look down at that point and see my medical ID and once again be reminded that my plans are not always what he wants for me.

I considered putting off the chemo even though my Bcells are at 1% but my vision has been getting worse over the past two weeks and I'm battling fatigue daily. I wanted to make it a year, I wanted to celebrate something that a couple of years ago seemed impossible. Instead, I think I'll celebrate the fact that I have a Savior who can give joy through all that I face. Here's how I look at it... God could grant a miracle and cure me of my ailments and be done with it, instead he has worked daily to give me joy and peace in him for the past four years. Frankly that's a lot of work because it's easy to get depressed, yet he continues to stand with me and to not give up on me even on the days I break down and scream "WHY?!" 

Getting caught up in living life.

It's been quite some time since I last posted, this is mainly due to laziness. Although I haven't posted I have made a lot of changes concerning my care and life in general since my last post.

As for changes concerning my care: I am no longer doing chemo treatments every two weeks... in fact I'm not doing them at all. That's right it's been 10 months since my last treatment and my Bcell levels are still below 1% for the moment. I did the treatments at two week intervals for a period of 6 months at which point I just decided that I was tired of spending so much time in the chair taking treatment. I have also switched doctors and am now back at UTSW with a doctor that specializes in NMO. Trust me this was not an easy decision and neither was hitting the 6 month mark and turning the doctor down when he wanted me to have an infusion. I took a chance on finding a sort of "remission" almost a year and a half ago, and I'll never know if it worked if I keep getting chemo before anything happens. It's also been about 3 months since I've had any sort of daily medication. I made the decision to come off all my daily medications and I'm currently only taking antibiotics if I get an infection. So far it's working out well. I no longer have pain in my shoulder from the nerve sheath being removed during attacks and my leg spasms happen very rarely. Being off chemo I no longer have issues with insomnia so I was able to stop taking sleep aids. Other than fatigue, I'm currently exhibiting very little symptoms if any at all day-to-day.

As for life changes: I made the choice to go back to work and come off disability fully. This was probably the hardest challenge because I had to leave a great job due to my disease and I've discovered that coming back to the workplace after almost 2 years not working is difficult. Other things that have changed... I'm single and I switched mid-way through my transcription courses to medical coding. I have a couple more exams to take before I'll finish the medical coding courses and I hope to take my certification exam before the end of the year.

Overall things are good, I just had an appointment at UTSW and got awesome news. I had MRI's done 2 months ago and as of today they are unable to find the lesion on my brain stem and none of my lesions are active. In medical lingo that's a diagnosis of unremarkable.... sounds pretty freaking remarkable to me! :) I had the best neurological exam I've ever had to date. As it stands now, it looks like I'm all set to celebrate a year in "remission" in December. That's honestly something I never thought I would be able to say, so I can guarantee you it will be a fantastic day spent thanking God for how far I have come since May 1st, 2008.