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
Thursday, April 22, 2010
Thursday, April 8, 2010
Spring, change, and breathing in fresh air...
As much as I get frustrated over all the trivial day to day stuff here, I also see all the results I am getting. Sometimes it's hard to see improvements in yourself, but the improvements are so dramatic that I DO notice them. M notices them every time he comes into town. So M and I thought we had OUR own "when K will be coming home game plan" for our meeting with the doctor. WE had been going to say that we wanted to know the risks/rewards of me coming home in a month or so. Then God reminded us that HE is the one who has the plans. He will tell our stubborn selves when it’s time for me to leave. We were trying to make things happen because we both want me to come home so badly. Before we could meet with the doctor on that Saturday, I had a seizure on Wednesday. As far as seizures go it was pretty much the same as the others I had been having regularly 2 months ago. It was after the seizure subsided that things changed. I tried to take a sip of water and could not get it down. My throat felt like it was closing up and the water came right back out. My sweet M was there to grab the nearest trash can for me. I can’t explain what happened next except to say I seemed to be having the worst case of “dry heaves” I’d ever dealt with and it was hard to take a breath. I told M it was muscle spasms. It felt like someone had grabbed me by the neck and was choking me. Further down my esophagus it felt like there was a vise grip being tightened and the pain was pretty bad. The nurses got the doctor to come in who agreed I was dealing with “intense internal muscle spasms”. Basically it was like having a seizure on the inside. The doctor had M sit with his back to my back for me to lean back on and stretch my chest muscles out, basically to open my chest up to breathe. The nurses administered more Benadryl into my IV line while my doctor forcibly held my chin up since the muscles in my neck were drawing my chin down to my chest. They put me on oxygen to help me take really deep breaths to calm the spasms. My doctor massaged the muscles down the sides of my throat to try and calm it down. It was a scary incident in some ways but God allowed me to know what was going on in my body. Fear can make incidents like this one so much worse. Anytime your body is not working properly it is normal to be scared. But, if you understand what is really happening, if you know that you are really going to be okay, it helps tremendously. Also, God has always allowed the worst seizures and incidents to happen while I’m at the clinic where help and medication is at our disposal.
We hoped the seizure was due to the medication I started back to fight the Babesia. We still felt WE could talk to the doctor about OUR plans. We have gotten in with a doctor at home who works with my doctor here and is less than 10 minutes from our house. WE had plans. WE had things covered. WE thought WE knew best. Then on Friday I was done with treatment and M was waiting by my cot and chair while I went and signed out. While I stood up there I knew all I wanted to do was get to the Ativan I had in my backpack, shove them in my mouth and get to the car – to get to the “quiet”. I barely made it around the counter before I started to stutter and M ran to catch the front of me while a nurse was trying to pull me up from the back. M carried me back to my cot where I had to get an Ativan shot and wait the seizure out. Again, after the seizure, I had the internal spasms. More Benadryl was administered as was oxygen and I knew how to counteract this time. It was still almost an hour before I could leave to go home. My wonderful nurses who were supposed to be able to leave at 6:00 on Good Friday took such wonderful care of me and repeatedly told me they were not concerned with when they got home, they were concerned with ME. So many of them pray silently over me and they are all so very caring. I believe that’s one thing that makes this treatment so different. You are with a rotating group of about 8-10 nurses. You have one for 2-3 days straight and then another and basically after you’ve been in treatment for awhile, you form bonds and friendships with these wonderful caretakers and they do the same.
Saturday morning, before our meeting with the doctor that afternoon, I had early signs of those internal muscle spasms and knew to take Benadryl and to take a couple of puffs of my Albuterol inhaler to open the airway, and to massage my neck muscles. By this time we knew God was telling us to leave my health is HIS hands. The doctor knows how much we want me home, but that was when we thought we were through with the seizures. The good news we were able to discuss is that my weekly blood tests are finally getting into normal ranges. That means my red and white blood cells are in normal ranges as is my overall blood level. My metabolic panel is even normal – potassium, chloride, sodium, etc. It’s the first time since I’ve been here that my weekly blood work has been normal. The doctor had some other tests run last week and everything came back normal with the exception of the Babesia which we already knew about. The doctor is still working on tests to see why I’m having fevers every day and my sugar has been high in the morning so the nurses will be doing finger prick blood sugar tests for a week to see if that is a problem or if it’s just that I eat too much sugar – I’m betting it’s because I’m eating too much sugar. But it’s a battle just to eat anything. It’s even harder to find something I want to eat and I have to eat to endure the treatments.
The Saturday night of the doctor’s appointment, I had another incident of internal muscle spasms around 11:30. It was much more intense than the others. I took several puffs of my inhaler, took 75 mgs of Benadryl, some Ativan and I simply tried to mentally relax my muscles. I’ve done this when I’m passing kidney stones – just focus on my breathing and not on the pain. The pain was bad but I held my chin up with one hand and rubbed my throat and chest with the other. M got my fingertip pulse and oxygen monitor and then put the electric blood pressure machine on my other arm. My heart rate didn’t get above 130 (I’m normally around 60-70) so that was good. My oxygen saturation didn’t drop below 96% either which is good. It helps to see those numbers and know that I am breathing and I am getting oxygen. I also have a tendency to rock back and forth when I try and focus on my breathing. I sit with my legs crossed in a yoga type pose with the back of my palms resting on my knees. I push my chest out to draw deep breaths. I rocked back and forth as I did this and before I realized it I was humming. Well, not like a steady humming since I couldn’t breathe well, but I guess like a hum/grunt noise. I was humming, “Jesus Loves Me”. I don’t know how long it’s been since I sang that song but I started humming it almost subconsciously. They say the devil cannot stay where God is present and I believe that the devil uses a lot of my illnesses, especially the “scary incidents” to incite more fear in my heart instead of the peace God gives me. As I hummed my rates came into normal ranges and the stranglehold I felt around my neck and chest eased. I know that’s a “God thing” as a friend of mine says.
God is definitely there in the midst of all of these incidents. His presence is almost palpable during my seizures. In fact, that’s the only good thing about seizures is that I feel Him there around me and I talk to Him in stuttered prayers and thank Him for His love and protection. I don’t want to have seizures, but I do know that God will never give me more than I can bear. I may wish things to be easier, but that doesn’t mean I cannot handle them. We all know the verse of “I can do all things through God who strengthens me” and I believe I’m living proof of that. So many people will tell me how strong I am, how well I handle things and it baffles me because it’s so evident to me that I’m NOT the one handling things. Any strength you see in me, any good you see in me, and any inspiration you might get from my story or my life is not FROM ME – all those wonderful things are from GOD. He is always behind every good thing anyone sees in me. I am only human and I have to admit how much of this I absolutely hate. I don’t want to have seizures, I don’t want to be in treatment, and I don’t want to feel like I’m turning 85 this month instead of 35. I don’t want the portable oxygen concentrator the doctor is ordering for me. I want to be strong, I want to be able to just go to a store without feeling like a seizure will strike, I want to have that “normal life” that others seem to have. But guess what? This is the life I was given – this is the path my Father had in mind for me all along. I have fought so hard for so long to be able to do what others seem to do with ease. I wanted to be able to go, to do, and to experience everything like other people. But, I’m having an experience of a different kind. I’m learning through the fire and sometimes that’s the only way God can get your attention. He got my attention a few years ago but as I’ve said a million times, He had to strip everything away from me before I could really know what it’s like to lean solely on Him. I wish I weren’t so stubborn because it honestly took ALL of this to reach inside my heart and change it for the better.
He led me to start this blog last May and while I do use it as a tool to let family and friends how I’m doing, God made me realize that I could do so much more than that through this venue. I was hesitant to allow all of this be “public”. Anyone can run across this site when they’re browsing around on the internet. That’s why I try hard to pray about what I write on here because I have no idea who might be reading it. I pray that I do justice for the job God set before me. I was raised in the church but didn’t go much during my 20s, but that didn’t keep me from praying. I always thought, “You don’t have to go to church to have a relationship with God” and that’s true in a sense. However, after M and I found a church we realized how much it adds to your relationship with God to have “spiritual mentors” to learn from, to get advice from, and to see how they handle hardships in their own lives. What I learned from some of my “mentors” was not just HOW to pray but how to LISTEN. God seems to always tell me to pray for His will to be done – probably because He knows that I really want to control everything in my life! I have had to practice this new idea of giving all control over to Him over and over again and I still fall short many times. I know I can pray to be healed, or to go home, or for this experience to be easier. I do pray for those things, but mainly I pray that His will be done in my body, my heart, and my life. I have no idea where things go from here but I know He does and I put my trust in Him. This verse speaks to me as I put my future in God’s hands:
“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)
Finally, my last original “roommate” has been released from treatment. Please pray for my sweet and wonderful friend, Stef, who will face the challenges of oral treatments now. I miss having her terribly, but God blessed me with her for almost 10 whole months and I know His plan included me having her as a lifelong friend. On that note I will say they are placing a new patient in my room on Saturday. I don’t know anything other than the new patient is a female and she is supposed to be extremely sound sensitive like me. Pray that the stress from meeting a new person does not cause me any problems. Pray that I am someone who this new person will like. Pray I can talk to her if it is God will for me to do so. Right now it’s almost impossible for me to talk to “new” people due to my own internal stress and the fact that my brain is constantly going 90 miles an hour, hence the seizures. It may be that God is sending someone to me that could help me or maybe that I could somehow help. I just have to trust that God will see me through this new transition because change is an extremely stressful thing for me right now.
I pray you are all doing well and rejoicing in the fact that spring is upon us. I love to see all the new leaves and flowers bloom. They are constant reminders to me that God renews the earth as well as our hearts and minds.
“Praise the name of the Lord your God, who has worked wonders for you.” Joel 2:26 (NIV)
“The eternal God is your refuge, and underneath are the everlasting arms.” Deuteronomy 33:27
We hoped the seizure was due to the medication I started back to fight the Babesia. We still felt WE could talk to the doctor about OUR plans. We have gotten in with a doctor at home who works with my doctor here and is less than 10 minutes from our house. WE had plans. WE had things covered. WE thought WE knew best. Then on Friday I was done with treatment and M was waiting by my cot and chair while I went and signed out. While I stood up there I knew all I wanted to do was get to the Ativan I had in my backpack, shove them in my mouth and get to the car – to get to the “quiet”. I barely made it around the counter before I started to stutter and M ran to catch the front of me while a nurse was trying to pull me up from the back. M carried me back to my cot where I had to get an Ativan shot and wait the seizure out. Again, after the seizure, I had the internal spasms. More Benadryl was administered as was oxygen and I knew how to counteract this time. It was still almost an hour before I could leave to go home. My wonderful nurses who were supposed to be able to leave at 6:00 on Good Friday took such wonderful care of me and repeatedly told me they were not concerned with when they got home, they were concerned with ME. So many of them pray silently over me and they are all so very caring. I believe that’s one thing that makes this treatment so different. You are with a rotating group of about 8-10 nurses. You have one for 2-3 days straight and then another and basically after you’ve been in treatment for awhile, you form bonds and friendships with these wonderful caretakers and they do the same.
Saturday morning, before our meeting with the doctor that afternoon, I had early signs of those internal muscle spasms and knew to take Benadryl and to take a couple of puffs of my Albuterol inhaler to open the airway, and to massage my neck muscles. By this time we knew God was telling us to leave my health is HIS hands. The doctor knows how much we want me home, but that was when we thought we were through with the seizures. The good news we were able to discuss is that my weekly blood tests are finally getting into normal ranges. That means my red and white blood cells are in normal ranges as is my overall blood level. My metabolic panel is even normal – potassium, chloride, sodium, etc. It’s the first time since I’ve been here that my weekly blood work has been normal. The doctor had some other tests run last week and everything came back normal with the exception of the Babesia which we already knew about. The doctor is still working on tests to see why I’m having fevers every day and my sugar has been high in the morning so the nurses will be doing finger prick blood sugar tests for a week to see if that is a problem or if it’s just that I eat too much sugar – I’m betting it’s because I’m eating too much sugar. But it’s a battle just to eat anything. It’s even harder to find something I want to eat and I have to eat to endure the treatments.
The Saturday night of the doctor’s appointment, I had another incident of internal muscle spasms around 11:30. It was much more intense than the others. I took several puffs of my inhaler, took 75 mgs of Benadryl, some Ativan and I simply tried to mentally relax my muscles. I’ve done this when I’m passing kidney stones – just focus on my breathing and not on the pain. The pain was bad but I held my chin up with one hand and rubbed my throat and chest with the other. M got my fingertip pulse and oxygen monitor and then put the electric blood pressure machine on my other arm. My heart rate didn’t get above 130 (I’m normally around 60-70) so that was good. My oxygen saturation didn’t drop below 96% either which is good. It helps to see those numbers and know that I am breathing and I am getting oxygen. I also have a tendency to rock back and forth when I try and focus on my breathing. I sit with my legs crossed in a yoga type pose with the back of my palms resting on my knees. I push my chest out to draw deep breaths. I rocked back and forth as I did this and before I realized it I was humming. Well, not like a steady humming since I couldn’t breathe well, but I guess like a hum/grunt noise. I was humming, “Jesus Loves Me”. I don’t know how long it’s been since I sang that song but I started humming it almost subconsciously. They say the devil cannot stay where God is present and I believe that the devil uses a lot of my illnesses, especially the “scary incidents” to incite more fear in my heart instead of the peace God gives me. As I hummed my rates came into normal ranges and the stranglehold I felt around my neck and chest eased. I know that’s a “God thing” as a friend of mine says.
God is definitely there in the midst of all of these incidents. His presence is almost palpable during my seizures. In fact, that’s the only good thing about seizures is that I feel Him there around me and I talk to Him in stuttered prayers and thank Him for His love and protection. I don’t want to have seizures, but I do know that God will never give me more than I can bear. I may wish things to be easier, but that doesn’t mean I cannot handle them. We all know the verse of “I can do all things through God who strengthens me” and I believe I’m living proof of that. So many people will tell me how strong I am, how well I handle things and it baffles me because it’s so evident to me that I’m NOT the one handling things. Any strength you see in me, any good you see in me, and any inspiration you might get from my story or my life is not FROM ME – all those wonderful things are from GOD. He is always behind every good thing anyone sees in me. I am only human and I have to admit how much of this I absolutely hate. I don’t want to have seizures, I don’t want to be in treatment, and I don’t want to feel like I’m turning 85 this month instead of 35. I don’t want the portable oxygen concentrator the doctor is ordering for me. I want to be strong, I want to be able to just go to a store without feeling like a seizure will strike, I want to have that “normal life” that others seem to have. But guess what? This is the life I was given – this is the path my Father had in mind for me all along. I have fought so hard for so long to be able to do what others seem to do with ease. I wanted to be able to go, to do, and to experience everything like other people. But, I’m having an experience of a different kind. I’m learning through the fire and sometimes that’s the only way God can get your attention. He got my attention a few years ago but as I’ve said a million times, He had to strip everything away from me before I could really know what it’s like to lean solely on Him. I wish I weren’t so stubborn because it honestly took ALL of this to reach inside my heart and change it for the better.
He led me to start this blog last May and while I do use it as a tool to let family and friends how I’m doing, God made me realize that I could do so much more than that through this venue. I was hesitant to allow all of this be “public”. Anyone can run across this site when they’re browsing around on the internet. That’s why I try hard to pray about what I write on here because I have no idea who might be reading it. I pray that I do justice for the job God set before me. I was raised in the church but didn’t go much during my 20s, but that didn’t keep me from praying. I always thought, “You don’t have to go to church to have a relationship with God” and that’s true in a sense. However, after M and I found a church we realized how much it adds to your relationship with God to have “spiritual mentors” to learn from, to get advice from, and to see how they handle hardships in their own lives. What I learned from some of my “mentors” was not just HOW to pray but how to LISTEN. God seems to always tell me to pray for His will to be done – probably because He knows that I really want to control everything in my life! I have had to practice this new idea of giving all control over to Him over and over again and I still fall short many times. I know I can pray to be healed, or to go home, or for this experience to be easier. I do pray for those things, but mainly I pray that His will be done in my body, my heart, and my life. I have no idea where things go from here but I know He does and I put my trust in Him. This verse speaks to me as I put my future in God’s hands:
“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)
Finally, my last original “roommate” has been released from treatment. Please pray for my sweet and wonderful friend, Stef, who will face the challenges of oral treatments now. I miss having her terribly, but God blessed me with her for almost 10 whole months and I know His plan included me having her as a lifelong friend. On that note I will say they are placing a new patient in my room on Saturday. I don’t know anything other than the new patient is a female and she is supposed to be extremely sound sensitive like me. Pray that the stress from meeting a new person does not cause me any problems. Pray that I am someone who this new person will like. Pray I can talk to her if it is God will for me to do so. Right now it’s almost impossible for me to talk to “new” people due to my own internal stress and the fact that my brain is constantly going 90 miles an hour, hence the seizures. It may be that God is sending someone to me that could help me or maybe that I could somehow help. I just have to trust that God will see me through this new transition because change is an extremely stressful thing for me right now.
I pray you are all doing well and rejoicing in the fact that spring is upon us. I love to see all the new leaves and flowers bloom. They are constant reminders to me that God renews the earth as well as our hearts and minds.
“Praise the name of the Lord your God, who has worked wonders for you.” Joel 2:26 (NIV)
“The eternal God is your refuge, and underneath are the everlasting arms.” Deuteronomy 33:27
Oh, and for those who think I just sit around thinking all the time, well, I don't. I believe that you have choices in life when unwanted or unexpected things happen. You can laugh or you can cry. I've cried some, but I've laughed more. Below I decided to share just one of the things I do in treatment to make myself laugh (and yes, I laugh at myself ALL the time). I'm in the "West Side Treatment Room" here at the clinic and the other room is of course the "East Side Treatment Room" but everyone refers to them as "East Side" or "West Side". Hearing the names I thought of the rap songs about gangsters who claim their turfs by throwing gang signs, wearing certain colors associated with their gang, etc. I was by myself thinking these things when I came up with an idea for an IV patient gang side. This picture is my idea of what the "West Side" gang sign should look like. So, yes, I find my own brand of humor in this situation. I just think you have to do that to get through life.
That's an upside down "W" with my IV line going through my fingers.
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