Changing plans is God's specialty

So, I’m writing this as my last blog entry from Kansas City. I haven’t been “magically cured” but I always said that God was the one who led us here and He would be the one to lead us home. In a quick turn of events I will be home soon. Before we came out to Kansas City we knew of a doctor in our hometown who treated Lyme Disease, Bartonella, etc. with IV antibiotics but instead of a clinic setting the patient did IV antibiotics at home. At that time I was much too ill to attempt something as scary as treating myself with IVs when I knew nothing about them. After feeling a push from God my husband met with the doctor in our hometown last week. They discussed my case and he looked over my current treatment protocol. My doctor in Kansas City had even recommended I should try and get into see this doctor once I was home. They have worked together with several Lyme patients who have come from Alabama to my Lyme doctor’s clinic here in Kansas City. When the new physician reviewed everything he said he would be happy to take me on as a patient. We all thought this meant in a few months when I was more “stable” health wise. My blood work from last week showed that I’m still far from “stable”. My hemoglobin is low again, my red blood cell count is low, my hematocrit level is low, my platelet count is low, etc. All of this is due to the Babesia and it shows why I’ve seen an increase in my seizures.

However, after praying to God to please make His will crystal clear to both me and my husband several things occurred which all led to us feeling God was now leading us home. The financial burden of living away from home and receiving treatment at the clinic was a big factor, but an even bigger one was that I know how to run IV antibiotics now, as well as inject Heparin, IV Benadryl, etc. The past 10+ months have really been a crash course in how to treat myself with IV antibiotics, take care of a PICC line, how to time the IV bags so as not to cause pressure on my heart, and the list goes on. I was far too sick to even consider this option a year ago, but now it is very much what we feel God is leading us to do and it is definitely what we want to do. It will cut down on expenses to not have an apartment in Kansas City as well as the clinic fees which of course include paying for the nursing staff. The real key is that I would be able to do IVs at home and away from the constant noise at the clinic. I had 4 seizures in less than 3 weeks due to the above referenced blood work showing how the Babesia is tearing my red blood cells and coming out even more. But the seizures also come from the stress and noise of the clinic. At home I would be able to control my environment so that I would not be under such stress. Also, I miss living with my husband terribly, not to mention my family and friends who I haven’t seen in almost a year.

I did get put on oxygen and it has worked well for me. I have a large liquid oxygen machine that I sleep with at night and use during the day here at the apartment as well as a portable machine that I use when I would go to the clinic. The company we use here has a location in our hometown and they met my father at our house today to bring a large machine and a portable machine that will be waiting on me when I get there. The company will be picking up the machine and portable here on Monday so it seems to have worked out well – which is what happens when God has made plans for you. Things just have a way of working out because God is leading you down the path He has made for you. He goes before you always clearing the way for you to follow.
Today was my last treatment at the clinic. It was hard to say goodbye to the wonderful friends I have made during my time here. I don’t mean just my fellow patients, which is hard enough, but the hard working and wonderful nurses who I have been blessed to have. Everything happened so suddenly that no one knew until yesterday that I was leaving. Many of them didn’t find out until today. I think that is also very much a “God thing” because the stress of stretching out long goodbyes would have been too much for me to handle.

Now, while I may be home, I will of course still be on treatment. My sound sensitivity is at an all time high and my central nervous system is shot. I have wonderful family and friends who will want to come and see me, but unfortunately that won’t be a possibility at least for the first week or two. The sad thing about these seizures is they can be set off by any stress and stress doesn’t just come from bad things, it comes from excitement as well. I had a very difficult morning balancing between saying goodbye to friends and being excited over the prospect of finally coming home.

I ask that you continue to pray for us as we go through this transition. God has made His will for us so clear we couldn’t help but see the writing on the wall and as stressful as this all is, we know He will be with us during the best and the worst of it. My doctor here says I can expect the seizures to last for the next year or two although hopefully they won’t be nearly as severe or frequent. We met for awhile this morning and we are on very good terms. They all understand that you can only stay away from home for so long and I made it clear how thankful we were for all of their help. We know that without getting to this clinic I would not be here today and for that I will be forever grateful. As I said, God led us here in His timing. As always, He knew exactly what was going to happen while I was here and He knew when He would lead us home and we just had to make sure and pray that we could see it as well.

Pray as we drive the 12 hours back home. We will be breaking it up into 2 days and my husband rented a minivan so we could have room for everything, but also in order for me to be able to create a makeshift bed and try and not see the road due to the fact that treatment causes me to have motion sickness. Also, the sensory overload of all the cars and trucks on the highways and interstates are definite triggers for seizures so we are going to try and keep me lying down with something over my eyes. My sweet mom will be following us in my car which will also be filled to the brim with all sorts of things. I never realized how much I had acquired over these past 10 months. Of course, there were clothes and shoes I needed for the horrible winter weather we had, but I’ve also gotten so many wonderful and precious gifts from so many people that I have much more than I thought to take home.

So, there you have it. The last entry from Kansas City, a city I won’t miss, but a place full of people that I will! I will continue to write this blog as long as God leads me to do so and I hope you will all continue to read it and keep us in your prayers. We had hoped to have me in better physical shape before coming home so your prayers are still greatly needed and as always very much appreciated. I’ll write again next week from the comfort of my own bed – YAY!

I know I’ve used this verse before in one of my entries, but found it so very comforting to see it on my calendar for today:

“You hem me in – behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.” Psalm 139:5-6 (NIV)

He has definitely hemmed me in and I look forward to where He leads us next.
Much love-
K