so, I saw the new doctor and the new med is happening but he doesn't believe in ports. The ONE thing that has truly helped me more than any med. My old doctor is a confusing situation. Basically she all of a sudden went to the VA 2 hours away. When she left we had 2 weeks to figure stuff out and she was still going to be there and help and she said she won't loose practicing rights so she can still manage my stuff. uhhh no. There is no contact information for her and I have heard various things on her practicing rights.
Now that you have that good old background, I will say the source of my struggle is that my port is being weird and it likes to leak the fluids out and it is painful and my nurse said it probably needs replaced. I am trying to trust God but yet my true feelings are still there no matter what I do. I can't make them disappear, I know all the truths in my head but it stops. There is no off switch to feelings that I have found. Yes, God gives peace and I shouldn't worry, but I do. It might not even go like I will write in a second but I'm scared that it will go that way.
The problem is if it needs replaced my new doctor probably won't allow anything other than pulling it with no PICC line or replacement because he wants it removed already. I have gone a couple of days before without the fluids and I felt horrible and almost passed out multiple times. Before the port was placed I was passing out 6 times a DAY and I can't help but to think how bad it will be if I don't do that at all. I am in what if land, I know but it is a good possibility that it will go that way and I just want someone to realize hey this does help her we can continue and replace the port but I have my doubts on this new doctor.
I am trying to give it to God but feelings still remain so please pray for me I am really struggling with this even though I shouldn't be cause God, but I do.
God's free hope in the chaos of life's trials
Thursday, December 24, 2015
Sunday, December 13, 2015
updates
1. I see my new specialist that wants to take my case on Tuesday at 10:30. Please pray for wisdom and peace. A part of me feels like this is my last hope but ya know there is Jesus so that isn't truth.
2. My birthday post: (late. shame.)
I feel incredibly blessed to have made it to 24 with so many close calls but God wants me here for something. When you are almost bed bound it's kinda hard to not feel useless. Insert Jesus here. My life has been pretty crazy but I am so blessed to be surrounded by a whole church family and friends! It means the world to me to just be prayed for given this situation that I am in...again. I'm good at it, obviously. It is so hard to bring myself to do things like birthday parties because of the crash that follows. Today I can barely walk, or move, or breathe, or do anything besides laying in a heap all day. Having said that being able to celebrate with some crazy people was absolutely worth it. I needed it. I needed to know that life still happens. God knew that so I was able to function for it all. He is awesome. I made it this far and that alone is amazing. Thanks for everyone who wished me a happy birthday, it really was the BEST birthday weekend I have EVER had, such a blessing.
Lastly,
I don't know what the next year holds for me but I know WHO holds it and blessing abound despite and through circumstances, we forget that a lot. It's been a very hard year but I am not alone and we shall see what the next year of my life holds.
2. My birthday post: (late. shame.)
I feel incredibly blessed to have made it to 24 with so many close calls but God wants me here for something. When you are almost bed bound it's kinda hard to not feel useless. Insert Jesus here. My life has been pretty crazy but I am so blessed to be surrounded by a whole church family and friends! It means the world to me to just be prayed for given this situation that I am in...again. I'm good at it, obviously. It is so hard to bring myself to do things like birthday parties because of the crash that follows. Today I can barely walk, or move, or breathe, or do anything besides laying in a heap all day. Having said that being able to celebrate with some crazy people was absolutely worth it. I needed it. I needed to know that life still happens. God knew that so I was able to function for it all. He is awesome. I made it this far and that alone is amazing. Thanks for everyone who wished me a happy birthday, it really was the BEST birthday weekend I have EVER had, such a blessing.
Lastly,
I don't know what the next year holds for me but I know WHO holds it and blessing abound despite and through circumstances, we forget that a lot. It's been a very hard year but I am not alone and we shall see what the next year of my life holds.
Thursday, December 3, 2015
Newest new
Well, to begin all this out let me just request your prayers as decisions are made and for divine intervention in it all.
My previous electrophysiologist moved to fort Leonard wood and I was slightly upset about it and how it is going to change things but I absolutely admire her decision to switch to caring for those that risk there very own lives to save the community and world so I can't be too upset about it but it did bring change.
On Tuesday I went and saw a new one and he was VERY honest which I appreciate but at the same time you don't want to actually hear it. He reviewed my records and basically said there is nothing that he or any doctor he could transfer me to can help. He said Dr.Q has done so much for me, more than he would have even done.
Then he said this is a complicated situation and diagnosis and there is no standard treatment. He said there is no cure, it is a lifelong thing and because you are so young and your quality of life is so poor the only thing I can offer you that might help is to go a special autonomic disorder clinic. Problem: he doesn't know how "getting into one" is achieved so I have to consult my primary care to get that ball rolling.
He would prefer for me to go to The University of Toledo Health and vascular center which has the leading specialist in this. I also did research on the like 4 mayo clinics in Arizona, Florida, or Minnesota. The issue right now after talking to a couple places that I am looking at YEARS to get in. Yes, years for my only hope outside of Jesus.
So thankful for the hope I have in Jesus I do not understand how people make it through this without it. Basically, they go from fad to fad hoping that maybe "this one will help me" and really the focus needs to be switched from the fads to the ONLY One that can help and heal you. Fads might work for a tad but in no time you will be searching for a new one if it is not from the Lord. Our peace should come from this:
Matthew 11:28-29
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."
That does not say turn to fads. yes, I realize God puts things and people there to help us. I am not saying that some of these fads could really be given to you by God. He is big and can do as He pleases so it is not out of the question altogether but look at your motives because I have seen So many people who try out all this stuff but they are replacing God and not "consulting" and using God to guide you on what HE wants you to try not what YOU want to try in desperation. God can give you something that could heal you but you cannot rely on that you must rely on HIM.
I am preaching to myself hard core right now as I struggle with new information and what will my life be like if no cure is available and my desire to look for hope in all the wrong places. We all struggle with this in one way or another and I am putting this out there mostly, for myself because I have to do some serious self preaching right now. Lord Jesus, come quickly.
In conclusion,
please pray for me, my family and my doctors as we make decisions on what to do going forward. It is complicated and we need God's direction so much right now.
My previous electrophysiologist moved to fort Leonard wood and I was slightly upset about it and how it is going to change things but I absolutely admire her decision to switch to caring for those that risk there very own lives to save the community and world so I can't be too upset about it but it did bring change.
On Tuesday I went and saw a new one and he was VERY honest which I appreciate but at the same time you don't want to actually hear it. He reviewed my records and basically said there is nothing that he or any doctor he could transfer me to can help. He said Dr.Q has done so much for me, more than he would have even done.
Then he said this is a complicated situation and diagnosis and there is no standard treatment. He said there is no cure, it is a lifelong thing and because you are so young and your quality of life is so poor the only thing I can offer you that might help is to go a special autonomic disorder clinic. Problem: he doesn't know how "getting into one" is achieved so I have to consult my primary care to get that ball rolling.
He would prefer for me to go to The University of Toledo Health and vascular center which has the leading specialist in this. I also did research on the like 4 mayo clinics in Arizona, Florida, or Minnesota. The issue right now after talking to a couple places that I am looking at YEARS to get in. Yes, years for my only hope outside of Jesus.
So thankful for the hope I have in Jesus I do not understand how people make it through this without it. Basically, they go from fad to fad hoping that maybe "this one will help me" and really the focus needs to be switched from the fads to the ONLY One that can help and heal you. Fads might work for a tad but in no time you will be searching for a new one if it is not from the Lord. Our peace should come from this:
Matthew 11:28-29
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."
That does not say turn to fads. yes, I realize God puts things and people there to help us. I am not saying that some of these fads could really be given to you by God. He is big and can do as He pleases so it is not out of the question altogether but look at your motives because I have seen So many people who try out all this stuff but they are replacing God and not "consulting" and using God to guide you on what HE wants you to try not what YOU want to try in desperation. God can give you something that could heal you but you cannot rely on that you must rely on HIM.
I am preaching to myself hard core right now as I struggle with new information and what will my life be like if no cure is available and my desire to look for hope in all the wrong places. We all struggle with this in one way or another and I am putting this out there mostly, for myself because I have to do some serious self preaching right now. Lord Jesus, come quickly.
In conclusion,
please pray for me, my family and my doctors as we make decisions on what to do going forward. It is complicated and we need God's direction so much right now.
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