executive decision *subject to change*

My dad and I had a long conversation the other night and some of the decisions I had to make are as difficult as difficult gets.

1. First, my IVIG was denied twice by the insurance company. That is not happening, not worth fighting for in my case.

1. I have no doctors to treat me because I have seen all of the best specialists around and there is nothing that they can do. Thankfully God arranged for my IV fluid prescriptions to go until discontinued by doctor.

1. I only have the one doctor who knows how to treat POTS but she moved and she only answers on occasion and can only give me ideas of medications but can't prescribe and my current doctors are too scared of my condition to have anything to do with it's treatments.

• The Cleveland clinic has been discussed but they have nothing for me that I haven't already tried so it is pointless.

My vital signs not being horrible is weird and can change at any moment but it is hard to get doctors to take you seriously despite all of my secondary conditions. They only look at the clinical aspect and don't care how I feel, only how my body reflects it all. It tends to go back and forth so I never know what I am going to be dealing with. If it doesn't reflect they blow you off. Iv'e been working on this post for days and now all of a sudden this happens of course that's how it goes because nothing about Dysautonomia is predictable: NOTHING folks NOTHING.

                                                     ***5 mintes later 100/60**

• We are treating my condition with symptom control but we can only try to control the serious ones and the rest I just have to live with. 

1. Dysautonomia is not who I am, it's what I have and I am tired of letting it stop me from everything. I will do things when I can even if I have to push myself a little bit.

• I kept seeing new doctors thinking that they will have what I am really searching for (a cure) and I know I am not going to get that because it doesn't exist and I just end up hurt so no more new doctors for now.

• After all THAT please know I am NOT giving up. You may be thinking well where does that leave me? I have been writing this for days because I didn't want to admit that I am out of current options. It is hard to digest. I will no longer see NEW doctors (besides the allergist) I will just simply be. This is it, the life God has planned for me right now whether I like it or not and unlike doctors He does have the power to cure me if He chooses. He may not on this side of earth but He has broken me down to nothing and my one and only treatment is to fully, with every bit of my being, rely on God, as it should be. I am working on laying this at the feet of Jesus and trust His ways and find hope in the fact that one day my God will cure me because we have been promised that all sin and its consequences will be made clean. One day I will fly away and He will wash away Dysautonomia and all the hurt that comes with it but for now please pray that I will fully surrender to this life and find peace in the One who formed me and has carried me this far. He won't give up. Earth has no sorrow that heaven can't heal.

giving up

At times every part of my being wants to give up. Today would be one of those. I am lost, stuck, and confused with no doctor to turn too. Yes, I have the one I text but frequently she doesn't text back. I'm in a new territory right now that I have no clue what to think or do. For the past month my vital signs have for the most part been "normal" besides a few episodes. So you (and doctors) look at that and think wow I am doing great! Yeah um no. Not at all. Despite normal vitals all of my symptoms from it being low remain even though it's not.


How I feel does not correlate with my vitals and I'm being blown off now. MY WORST FEAR. I have 15-20 fuzzy head/ the beginning of a pass out episodes every day but my vitals don't match up. I am short of breathe, weak, no stamina, GI issues, sound sensitive, all of the symptoms I had before, I continue to have despite my vitals being decent.


I am not handling this very well, I'm alone, It's just God and me, no doctor wants to deal with me or even believe that my symptoms are real. It's weird to ask people to pray that they would go back to crazy vitals. Not too crazy like hospital crazy but to reflect how I feel so I can be helped by doctors.
I am struggling to keep it together and failing. The good news is I don't have too God can, will you pray for Godly wisdom and the right path to take?