The the last few weeks have been a little crazy but I guess with me that is nothing new. There has been a lot going on with the kids and certainly a lot going on with me. I have taken a few rides on the "emotional" roller coaster. For some strange reason I still don't like that ride much. I have gone from happy to sad, frustrated to at peace, hopeful to hopeless. You get the picture. I should have expected some turmoil for the simple fact that we went to church. You don't need all of the details but like a lot of people it is easy to get in the habit of skipping church. I don't feel good, my husbands working weekends so it's hard for me to take the girls by myself, my daughter has a softball game and a million other reasons. My husband and I both knew we wanted to get back to church. So just last weekend we went. Not only once but twice. Our daughter sang for school at Saturday night church and we went to our church on Sunday morning. God welcomed us back with open arms and two great sermons. God really spoke to me and I was just kind of filled with peace. That should have been my warning, it was like the calm before the storm. The devil had to come in and start messing things up. So this past week has been especially tough. As I sit here tonight though, I am doing okay. Still working on trusting God completely and not stressing out or worrying about anything that we are facing. I just need to take it a moment at a time and know God has a plan.
So let me tell you about what has gone on treatment wise and where that is going. That of course will lead into the money part of things. Yesterday I completed day number 30 of my IV Rifampin. Too my surprise that is all I am going to take of it. Even more surprising is that I have mixed emotions about only doing one month. We never did find a cheaper source for that medication so I am excited about not having to spend another $1400+ however that doesn't mean my treatment got any cheaper. I don't know 100% why the doctor had me stop after only one month when we were really planning on 2 if not 4 months of it initially. I did feel like there was some minor improvement although it was hard to describe exactly what was better. I definitely had some returning symptoms and some new ones. The headaches that had started continued and I have had a nasty tension headache almost everyday for the past month. I also developed bad heartburn. I think the doctor was hoping for some more improvements. He seemed to key in on brain issues. "How is your brain fog and concentration? Any better?" Well I left my IV antibiotics at home twice when I went to the doctor, and not only did I go the wrong way to the doctors, I also went the wrong way to take the kids to school. That last one is a big one since the kids school is like two blocks away and on the same street we live on. I would say um no improvement in the brain area. Due to that and the doctors excitement over some new treatment he said stop the IV and lets have you try this light therapy. This sounded good to me. The only down side is the cost. At a $150 bucks a treatment, twice a week for a total of 12 treatments that puts us around $1800. Of course this wouldn't be an option if it weren't for my great friends and family and the fundraisers that have been going to help us.
As I said, yesterday I finished day number 30 of that IV med and today I started light therapy. Let me just tell you that if anyone had walked in during my treatment, I don't have any doubt in my mind that they would have called the authorities and tried to convince them that I needed to go to the hospital and be put on a 72 hour hold for a pysch evaluation. Just imagine, you walk into a room, and see me laying back with about 12 glass vials (very much like the little perfume sample bottles) taped to my stomach and I am holding what looks like a grocery store scanner or radar gun to my forehead. I am not lying to you. I almost wish I had a picture. So either I am nuts or I am trying to contact the mother ship, which I guess would also make me nuts. Beam me up doc! Maybe the aliens can fix me. All I can say is I had a good laugh at myself during all this. I'm thinking how a few years ago I would have run from a doctor or person trying to get me to do something like this. But God took the time to prepare me for the journey I was about to embark on and now I not only put radar guns on my forehead but I am even considering acupuncture. Anyone that knows me well can tell you that me and acupuncture would be a true miracle but I will save that discussion for another day. In any case, this treatment takes me a little over an hour because there are 10 points on the body you use this light and you do it in two rounds for different amounts of time. I have heard some good things about it so lets just pray that it works. I will do the treatment myself and do about 6 of them at which point I will take a month off before I would consider doing the other 6. I have started to feel a little worse in the last few days but today I really felt miserable. Tired, headache, lots of pain...it is always hard to tell for sure what is going so whether the treatment stirred things up I don't know for sure. That is my thought though. I guess I will know more on Monday when I go for round two.
This leads into my other treatment plans. After much deliberations, prayer, discussion, etc., I am planning on going to the Hansa Center in Kansas and have made my reservations. I had so much to consider when making this decision but here is what it came down to. First off this place has just been on my heart since I read about it. The more I learn the more I like it. Now they had an anniversary deal for a flat fee that was a couple thousand dollars cheaper than it is normally to go for two weeks. Of course that got my attention. After my fundraiser and some other help it looked like I may be able to consider going. I talked with the center again and wanted to confirm that they had no payment plans. That is when they told me that they do work through Care Credit and have a deal with 6 months no interest financing. I was beyond excited. So I went home and applied immediately and received instant approval for about half of what I needed to go. In my mind it was a sign that I had to go. Unfortunately my family didn't necessarily see it that way and we had some intense and emotional discussions on the issue. When all was said and done though I booked my appointment for January 2 through 13. If all goes as planned, I will be spending the first two weeks of 2012 in Wichita, Kansas hopefully getting my health back. The only thing that would make it better would be to have my family with me. Being away from my husband and kids for two weeks is going to be really tough. But I hope to come back so much closer to being the mom and the wife that I desire to be. What a way to start the new year. I am excited beyond belief. There is always a chance that I won't end up going but I am going to do everything I can to make sure I get to keep this opportunity. The last step is booking my flight. My hotel is reserved already. I have been checking flights and they are reasonable right now. I just need to confirm what refund or cancellation policies are. It looks like I would be flying Frontier which I have heard good reviews on. The cheapest flight so far, with tax and fees and all is about $300 round trip. I just need to know that my money is not totally lost if I have to cancel my trip. That deal was through Priceline so I have a little more research to do. I don't want to wait to the last minute either. I am flying out on New Years Day so I am hoping that keeps the price a little lower.
That brings me to the money. Oh how I wish money was never an issue. I am working on not making it one but right now it is still a dark cloud looming overhead. I think the issue is more with family than with me. I have really begun to feel a peace that God is taking care of it. However, the devil seems to be going after my family and they are just not at the same place I am. Because we are in this together their concern, worry, and opinion play a big part in how I proceed. This is where some of the concern with Kansas came in. If I go, and it doesn't work, then will I have just spent all of our money and have no money left for treatment? I see their point but I am trusting God on this and I feel like this is what I need to be doing. Of course add in things like Christmas, vehicle registrations, vehicle maintenance, etc...and it is easy to go into a tailspin of worrying and thinking the worst. I have continued to see God bless us though and have also felt like we are blessed so much more that we realize sometimes. It is easy to say that we don't have money to spare for others but the reality is we do. If I have money for a Starbucks even once, or a new jacket for my kids, or for cable or a cell phone I have money for others. The message we got from church had so much to do with this topic. If we look at where we are spending our time and our money, we will get a good picture of what is important to us. It seems the more we focus on others and help those in need the more we are taken care of. I am so on board. I am just praying God reveals this as clearly to my family. I am not ready to panic yet. God has our back. I am excited to see how He works things out.
I could go on but at this point I will be lucky if anyone read this all the way to the end. Thank you again for keeping on my crazy and wild journey through life with Lyme. I will try to update a little more often so my posts aren't so long. At least it may be good enough to put you to sleep right?
