Julia and I went to Dr Br in Kansas City on Tuesday.
I will try to wrap my brain around what he said
Basically we are going to go on with the aids drug we are using plus the other stuff I am on and adding supplements to this.
He has been doing a lot of research and has found great information about the supplements he thinks will help in the fight against the xmrv virus. After two months we will see how things are going as in blood test etc, then they may add the other aids drug back. (the yucky one)
We felt very confident in all he had been studying and he is on top of all the different researches as he has been an infectious disease doctor for a very long time. He said this virus is a retro virus as aids that is why he is treating it as he would aids patients.
I will stay on the antibiotics for the lyme.
He also has found a new malaria drug is now available in the US for the babesia. I have been trying to find a pharmacy that has that one, so far no luck. I was excited to hear about it as it is only a three day treatment. 4 pills a day for three days. So then maybe I can go off the malarone that has been bothering my stomach.
So that is about all we know for now. It is a lot to keep straight and I am very thankful Julia can go along and listen and keep it all straight for me. After about two sentences about this cell and that cell I am lost!
He said all the symtoms from the drugs are very normal and most patients have some type of symtoms, so I guess I am normal after all!
A friend sent me this quote. I find it is perfect! Some days the fight gets so hard but I know God is in control!
We don’t live according to our own plans. We live by God’s plan. And as the church chimes playing “God will take care of you” told me, He will always take care of us. Maybe not by shielding us from evil, but by giving us the courage to face it.
Family 2011
Thursday, April 7, 2011
Sunday, February 13, 2011
Valentines Day 2011
As I sit here thinking about how I haven't written on my blog for a very long time I have decided today is the day to continue on talking about my journey. I had a couple a ha moments in the last while and I feel like I need to share them. The journey I have been on has been tough for the last while. I am tired of pretending everything is ok. I try to be tough and not let anyone know how I really feel because as God has told me I am stubborn. I think I have to be tough, I think I can just fight on and not let other's know how I really feel. I had a dear friend tell me that I need to honest so people know how to pray for me. Well, I have felt that people get sick of hearing about me being sick and tired so I pull myself up by my boot straps and try to fight on. I feel I am going on alone. I know my family probably knows more than anyone my day to day struggles. They know the pain and frustration. I let my husband see the good, the bad and the ugly. He knows. But, I felt like if I could just handle this I could do it and plug on. Then as I was in prayer it was if God told me "why don't you let me fight for you for awhile". I am 52 I do know better. I know I am not alone, I know God has not deserted me, but I feel like maybe He is growing weary of me too! I am weary of me! Truth is, I feel rotten. I am discouraged, weary and tired. I feel like my fight is gone.
I found out that I do have the xmrv virus. It is all so confusing to me. I am so thankful my family does the advocating for me. I don't understand it all. I just know the new drugs I have had to start is making me feel the worst I have felt since begining this whole process! I have had many days where I do not even get out of bed. As I talked to the nurse the other day she said this is a rough, rough road and we know you are tough so hang in there. Again I was hit with why am I so afraid to let other's know what is really going on. Why do I have to put on the "tough" act when really I feel beaten down right now. I think that is where my stubborn "dutch" attitude comes in again that I feel I have to be alright on the outside so no one can really know what is going on inside. I will never forget the example a junior high teacher gave us once in class. The outside of us has to appear perfect that is what the world sees, God sees the inside, He sees everything and He loves us no matter how crappy and full of garbage our insides are. The teacher spoke on about how we love to have the outside of our cars spotless, but when you open the door what is really in there? Everything on the inside isn't always as it seems on the outside. Same with humans. We can try to be perfect in every way on our outsides, but God doesn't care about that as much as He cares about how our insides are with Him. He isn't weary of me even if I am, He loves me no matter what! I often have little chats with God. I will say if you want this or that do that. I don't know why, just seems to be how I work. I was praying "in bed" alone no tv, no radio, alone in the quiet and I was so weary and tired I said God I am done I can not do this treatment anymore. I am trying to fight on and let you use me however you choose. I am fighting on for my family and my 5 little grandchildren who mean the world to me, but guess what you are going to have to show me a sign to fight on or I will quit. No more drugs. Just let the disease do with me what it wishes. Before I could say "Amen", the phone rang, my best friend called he has been my best friend for over 35 years, he is my husband, he called and said "hey honey I know you don't feel good today but get on your clothes and ride in the truck with me to take a load of corn in", so guess what I did? Yes, I listened and got on my clothes I could be seen in public with and took off. Thanks God, that was my sign. I know I get signs all the time. We all do. Do we listen? Do we do what our signs tell us to? I know God has a plan for me through this all. Who knows what His plan is? I just know I really am NOT in control. Even though I think I am, I am not, and Praise the Lord, He is!! So on I fight. Really on we all fight. The whole family has really been effected through all we have been through. So we all fight on together. Isn't that is what it is all about? Loving each other well. Through the good and bad. Yes, we fight on.
I found out that I do have the xmrv virus. It is all so confusing to me. I am so thankful my family does the advocating for me. I don't understand it all. I just know the new drugs I have had to start is making me feel the worst I have felt since begining this whole process! I have had many days where I do not even get out of bed. As I talked to the nurse the other day she said this is a rough, rough road and we know you are tough so hang in there. Again I was hit with why am I so afraid to let other's know what is really going on. Why do I have to put on the "tough" act when really I feel beaten down right now. I think that is where my stubborn "dutch" attitude comes in again that I feel I have to be alright on the outside so no one can really know what is going on inside. I will never forget the example a junior high teacher gave us once in class. The outside of us has to appear perfect that is what the world sees, God sees the inside, He sees everything and He loves us no matter how crappy and full of garbage our insides are. The teacher spoke on about how we love to have the outside of our cars spotless, but when you open the door what is really in there? Everything on the inside isn't always as it seems on the outside. Same with humans. We can try to be perfect in every way on our outsides, but God doesn't care about that as much as He cares about how our insides are with Him. He isn't weary of me even if I am, He loves me no matter what! I often have little chats with God. I will say if you want this or that do that. I don't know why, just seems to be how I work. I was praying "in bed" alone no tv, no radio, alone in the quiet and I was so weary and tired I said God I am done I can not do this treatment anymore. I am trying to fight on and let you use me however you choose. I am fighting on for my family and my 5 little grandchildren who mean the world to me, but guess what you are going to have to show me a sign to fight on or I will quit. No more drugs. Just let the disease do with me what it wishes. Before I could say "Amen", the phone rang, my best friend called he has been my best friend for over 35 years, he is my husband, he called and said "hey honey I know you don't feel good today but get on your clothes and ride in the truck with me to take a load of corn in", so guess what I did? Yes, I listened and got on my clothes I could be seen in public with and took off. Thanks God, that was my sign. I know I get signs all the time. We all do. Do we listen? Do we do what our signs tell us to? I know God has a plan for me through this all. Who knows what His plan is? I just know I really am NOT in control. Even though I think I am, I am not, and Praise the Lord, He is!! So on I fight. Really on we all fight. The whole family has really been effected through all we have been through. So we all fight on together. Isn't that is what it is all about? Loving each other well. Through the good and bad. Yes, we fight on.
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