Pressing on, forging ahead...

Hello Folks! The last 24 hours have been so sad. Please join with us in prayer for Japan. It is so incredibly devestating to see all the destruction. May God use this tradegy for His glory. Please be praying for the families who lost loved ones.

As far as our week goes, it was not the best. However, God has convicted me a lot lately that my joy should not be in my circumstances. I think too often when you are chronically ill, it's easy to let the disease consume you and affect pretty much everything in your life. However, I want to share something that I read recently on my dear friend Candice's blog...

"Now I realize though that your world is what you make it. My world may be small, full of monumental obstacles, and entirely stripped of what it used to be, but it was never going to grow if I didn’t accept it. Once I did, I found that though my world is quite difficult and far from normal, it’s unique, and there are still plenty of opportunities to enjoy it. That is, if you’re looking in the right places."

This is so true. Our world is definitely small with my restrictions and illness, but there is joy in our lives. We just have to work a little harder to find it, but it is there. I know that our main joy each day should radiate from the love that we have for our Lord Jesus Christ. It's hard to do when you have to deal with horrific symptoms day in an day out and the stress we must face; however, that does not give us an excuse. We are going to work hard to find joy in the Lord and the little things. Now, you can hold us accountable! :)

On to my doctor's appointment. Well, this appointment didn't go as well as I would have liked it to. I still haven't seen the main doctor yet. My appointment with him is on May 6th. I have seen the PA in person and have had one phone consult with her. This particular appointment was with the naturopathic physician that also works with the main doctor. Only him and the PA do phone consults. I guess the frustrating part was that he didn't know my case (which is not his fault, I have never seen him in person), and we were having to make some treatment decisions. It was hard to do that given the obstacle we were facing.

Our first question was whether or not to stay on Rifampin. This drug has really hit me hard and caused a lot of bad side effects. However, we didn't want to stop it if ultimately it is the drug that will get me well. At the same time, we didn't want it to wipe out my system so bad that it would do permanent damage and take me to a place of no return when it comes to my chemical and allergy sensitivities. The answer was that in his opinion he thinks it's fighting the Bartonella big time, so I need to try and stick it out as much as I can. He gave me a detox idea that I probably will be able to tolerate, so hopefully that will lessen some of the symptoms. I am praying so because last night I didn't get any sleep and at around 5:30am I was laying in bed feeling like I was suffocating...major air hunger.

Our second question was about the future of my treatment protocol. We have known we can't do IV forever. As we have reviewed our finances over the last month, we have come to conclusion that the time to pull the plug on IV is soon. I have been on it since September and although it keeps me stable (especially cognitively), we haven't seen much overall gain. If oral azithromycin can keep me stable, then we need to try to move away from IVs. The ND I was talking to wanted me to try IV Merrem before we stopped IVs, but since my insurance has quit paying and the drug would cost more than $1500 per month, we just can't do it. I will still keep my port cath in just in case we need to go back to IVs. It's important I don't decline too much cognitively so that I can keep up with my school work. So, we would definitely appreciate big time prayers for the next two weeks. Also, my stomach doesn't handle orals very well, so please be praying for that too.

We are going to try to add two herbal protocols A-Bart and A-L Complex that is part of the Byron White protocol. I have heard a lot of success stories, but that it's hard to take. So, that would be another prayer request. I also need to get on a couple of other meds along with a Vitamin C that would help my immune system. However, this will all be challenging because right now I am reacting to my own food that I can normally eat. So, God definitely needs to move!

That's all for now. I hope you have a wonderful weekend. Remember to find joy even in the little things! Blessings!