doozy of a heart change. The bad, hard way.

I have not written anything in awhile and I think I'm ready now to update. I have had to pull back from the world for awhile now and just go off the grid to regroup and carry on in the fight. I have been and still am struggle more than I have told anyone. This syndrome and all it's oddities, unexplainable symptoms, not believed symptoms and complications is consuming me. I am not even close to content with my life. I have absolutely nothing besides my God. He is sustaining me in my struggle and I would be nothing without him holding my life in His hands and the promises He makes right now. I'm hanging from a Jesus thread.  The only comfort or any sense of peace I have right now is that His thread will NEVER break.


Folks, I have been in a self discovery phase and you know that one content word I used? Yeah to really learn how truly discontent I am has been hard. It starts with the basic stuff that I have dealt with this whole time such as not being able to drive, or be in public alone, not being able to attend church and frankly just not being able to do what I want to do, when I want to do it. independence. That's the always saga of my life that I always grieve over but it has grown and not in the right direction.


The grief list and it's severity has taken off like wildfire. Everything good has become a harsh reminder that is beating down my sense of purpose, self worth, and hope that I put it in the wrong things. I have always been sad that I can't participate or live like I feel I should be at this point but I slowly realized something sneak in that I never thought I would let in. Suddenly, watching people's lives unfold hurt more than it ever has. Not being able to do things became my enemy. Not only was I sad  every time I saw pictures or heard about get together's I didn't even know were taking place, engagements, weddings, babies, family, vacations, friends, jobs and anything and everything good I let bitterness and jealousy sneak in.  Instead of being purely joyful for them I would think "well good for them" and then become bitter because there lives were unfolding just like I have always dreamt and imagined mine would.

God and I have done some battling because I am stubborn and want so many things while He sits there telling with incredible patience that He is the only thing I need. over and over and over again. Wants? you don't need those. Let's try again. I AM ENOUGH. I AM  ENOUGH. I AM. God and my own "plans" collide. Slowly and still a work in progress He is teaching me that I do not need a man for life to continue. I don't need a baby in order to be happy. I do not need to leave my bed to find joy. I do not need to attend events in order to find purpose.  EVERYTHING I COULD EVER WANT OR NEED IS IN THE HANDS THAT CREATED OUR HEARTS DESIRES. Yes, I am still and will continue to grieve losses and that my friends is okay but by the grace of God my bitter and jealous feelings are fading. Little by little. Side by side with the one and only I AM.

bad days. Good reminders.

truth in the trial

I can't wash my laundry

I can't put laundry away

I can't shower

I can't drive

I can't work

I can't tolerate too many  kids

I can't take care of my own cat

I can't forget my past

I can't let the heartbreak go

I can't help others like I want too

I can't do this alone

I can't

I rely on heavy blood thinners

I rely on feeding tubes

I rely on Ports and IV's

I rely on hospitals

 I rely on family and friends

I rely on prayer

I rely on rides

I rely on human interaction

I rely on medications

I rely

Hope is Jesus

My counselor

My delieverer

My light

My Lord

My master

My mediator

My healer

My restorer

My rock

My advocate

My hope

My peace

My strength

My passion

My love

My comfort

My sustainer

My great physician

My rescue

Mine

He is the almighty

He is the alpha and omega

He is the beloved son

He is the bread

He is the chosen

He is Christ

He is Emmanuel

He is everlasting

He is life

He is the lamb of God

He is the light

He is the Lord

He is the master

He is the messiah

He is the redeemer

He is the resurrection

He is the way

He is the truth

He Is

I am called of God

I am chosen

I am rescued

I am never alone

I am the apple of my father’s eye

I am being changed into His mage

I am a new creation

I am the temple of the holy spirit

I am forgiven

I am redeemed

I am blessed

I am healed

I am loved

I am victorious

I am one in Christ

I am fearfully and wonderfully made

I am set free

I am yours

All yours

The life you knew....poof

LISTEN TO THE LYRICS BEFORE YOU READ AND IT WILL MAKE MORE SENSE








I am trying so hard to get past the struggle portion, I feel like I will never be what I once was. There is truth in that my life has been forever changed, it will never be the same, I will not get back what I had but I have the head knowledge to know that I can move forward by the grace of God. My heart is a different story and hasn't caught up yet.


  I don't know what forward looks like and a part of me is scared of it. Scared of this right here being my life until Jesus takes me home. Facing that is like a dagger to the heart, it's daunting, sad, helpless, lonely and broken, this whole journey has been all of those scattered around. I am working on letting go of MY hopes and dreams for myself and surrendering them to GOD'S plan for my life and it is hard because they don't always match up. I know His plans are better than I could ever imagine but the hurt is still there and very real. There is no exit sign or get out of jail free cards in trials.


God has me right where He wants me, Broken.


 It is only through brokenness that light can shine through. When we see hardship God see's purpose and healing because He is, was and always will be the only loving savior that can restore our broken minds, bodies and souls. Clinging to Him is all I have left, my only option. Let's not forget that He is your only option as well, when the day comes and He takes us home all of these earthly things that we try to take comfort in or replace God with will be gone as we stand before Him. Family, food, friends, careers, sports, cell phones, and internet will not be there for you to lean on. As this life fades away and all of your idols are stripped away what is left? (rhetorical question)

perspective

I set out on a mission this week to leave my house and do things as much as possible and by the grace of God I have but being thankful for what He allowed me to do is so hard when I now find myself crashing. It is such a balancing act that I haven't figured out yet. I was able to do things and I'm grateful for that but (there is always a but) I am not where I want to be. This week has been so hard, I want my life back, it will be 4 years next month and I am so tired of it I just feel like I'm barely holding on. My heart is sad about what my life has become, I would never have guessed I would be in this spot...again. God's healing hands saved me from the brink of death in a coma so many years ago and I just assumed that I could put it behind me and move on, and I did for 3 years but it all came crashing down in one day.

God can't be assumed. Obviously. It's hard to mourn the loss of the life I had and be thankful at the same time. My perspective has everything to do with it. I know God did not abandon me, fail me or hurt me and when I feel like that isn't true it is all on me. When all I feel is pain and heart break God alone is purpose, everything He allows is not in vain even though I struggle to find joy when I am so wrapped up in the troubles of this world He alone is Joy, hope, love, peace, healing and love and if I seek Him I will find it all. 

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?