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?

dumping my heart out

I am having a really hard week and in these moments I tend to push everyone away including God. I'm just going to pour my heart out for you all. phew. ok. I got 3 years of being a normal healthy person. I don't know what healthy feels like anymore, I feel defeated. I can almost feel the war going on between God and the devil about my life and how I cope with it. Satan is sneaky as can be and he is attacking me in anyway he can, he knows my weaknesses' and man is he good at using those.


I have my  moments where I still run away from God but I've been working my way back for awhile now and I have found there is  ONLY one treatment for this syndrome. Just one. Jesus. He can take it all away with one word, speaking with power and making the enemy flee. Now He has no obligation to take this away, maybe his plan is for me to battle this for my entire life and if that is the case He is going to have to strengthen me, walk this with me side by side, and give me peace for the journey. He allowed this to happen so why would he stop being a part of it?! I know He is here but the pain is so raw and real to me right now. The tears fall today, IV's making pumping sounds, my feeding tube makes an even louder noise, I am on 25+ medications and just fighting to stay alive every single day and it  consumes me.


My only hope is in the hands of the God that created this body of mine.  My , peace, comfort, trust, faith, love,  and compassion come directly from the One who is victorious over death and eventually He will make this world perfect again with no suffering but in the meantime we are to stay in the fight. I am struggling to stay in this fight and the thought of being like this for my whole life is terrifies me. I don't know how to cope with this...forever. I just don't know.  I question God not on letting this happen but more so on why so much? Isn't POTS in itself enough? I just don't get it and it is incredibly hard to wrap my brain around. I need God to take over. I'm just discouraged.


I am asking for prayers AND encouraging verses to cling onto when I feel like there is no end.

You're shattered
Like you've never been before
The life you knew
In a thousand pieces on the floor
And words fall short in times like these
When this world drives you to your knees
You think you're never gonna get back
To the you that used to be

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again

Beginning
Just let that word wash over you
It's alright now
Love's healing hands have pulled you through
So get back up, take step one
Leave the darkness, feel the sun
'Cause your story's far from over
And your journey's just begun

another day, another diagnosis

This right here is plaguing me. I have it frequently but it usually goes away in an hour or so. Not this time, day #3 of intense burning. The doctor confirmed today that it is mast cell activation disease and gave me names of 3 medications to try (as if I am already not on enough of them) but I have to find an allergist that will prescribe it. Basically, I am allergic to myself. Just another blissful day in my world.

grieve

I am struggling with every-thang in my life right now. Fall makes me cry. I love the temperatures and it is the only time I can do outdoor things but it also carries a deep sadness from memories I wish I could re-create.


Going through my pictures, I found some from the last vacation I went on. Forever long ago. I long more than anything right now to be sitting on this pier and talking about life with the BFF as we hear the fish jump in the water. Taking in the beauty of God's incredible creation instead of these walls and stucco ceilings of my cave. My soul longs for it's peace and quiet atmosphere. I need a getaway to here so bad but I don't think it is currently plausible when you live on social security. I'm gonna go cry in a corner while you view the pictures I am crying over. mk. mk.

epic breakdown

The last few days have been incredibly hard for me in every way and I lost it. Completely lost it. I am so blessed to have a father that loves the Lord and doesn't downplay my emotions. I texted him in that moment where you are rocking in a fetal position sobbing because it's more than you can take. He entered the cave and immediately sat down and said come here and held me as I sobbed all in complete silence. In that moment I didn't need words, a list of bible verses or the whole just trust Jesus lecture. I needed held when my life felt like it had shattered. I wasn't asking for a solution, just a hand to hold and a body to hug.


I couldn't even think, all I could spit out was that I can't and don't want to do this anymore and I feel like there is this tangible grasp of hope in IVIG and I can't reach it. I miss my "old" life more than anything and it's ok to be sad about that. It's hard to come to terms with and accept the different plan Jesus has for my life. I know He has far better plans that we don't understand through the hurt and pain. With everything I said; my dad's response was "I get that" and "it's ok to feel like that". "It's ok to grieve." IT'S OK TO FEEL LIKE YOUR FUTURE THAT CONTAINS ALL YOUR HOPES AND DREAMS IS FADING AWAY AND YOUR HEART HURTS OVER THAT". Maybe God's plan doesn't involve any of your deepest desires but God is still good and in eternity it won't matter. It's ok to feel things. God cried, Job cried and David cried out to our savior with despair and we can say that these prayers were not full of butterfly's and rainbows but of deep sorrow and pain. God knows what that feels like as he experienced it right along with us on this earth, leaving glory behind for our sake. I sure wouldn't have left heaven for a bunch of idiots but yet He loves idiots enough to die for them. (I don't) (just sayin)


 My dad wishes he could fix this but he can't and that is hard as a father who longs to protect His family but in this moment he can do nothing, I can do nothing. people can do nothing.Only my heavenly father can. My destiny lies in the hands of my creator as hard as that is to comprehend. I long to have Him in person, but because that is not an option I have to practice this thing called faith that I royally suck at. The sorrow, pain, defeat, isolation, the walls of my room, the IV's, the feeding  tubes, the medications, the lack of an immune system, the feeling like death when I take these meds in the morning, the new masks, the new gloves, the belly injections, the muscle spasms, the harlequin syndrome, the surgeries and the seizures plus plenty more all has to be worked through by faith in a savior that will redeem us and take it away in his timing. Perfect timing.


My current treatment IS HELPING AND I NEVER GET TO SAY THAT. I am encouraged that these autoimmune meds are working but  the side effects of them are something I never would have imagined. My immune system is being very slowly destroyed by these meds in order to stop them from attacking me and it's brutal. We keep having to decrease dosages but as a result it allows my body more freedom to attack.


Life is just hard. Jesus come quickly, your idiots need mucho help. (I cope with sarcasm and you are welcome to join in, I will not be offended despite the seriousness of my issues)

new doctors. more detailed information

New doctors are always a good time. The minute this doctor reviewed my ENTIRE case (after I left the office) he called and said he is 100% sure that it is autoimmune because I had been fighting an upper respiratory issue when I got sick and my body just never stopped fighting it. I am now on immune suppressant medications and given my history I have to wear a mask if there is a lot of people in a small area. Even better times.

Here is my current situation: I NEED IVIG in order to get better but the insurance does not want to cover it. Please Pray hard that my skills in working the system get me somewhere. The doctor is going to try to get it covered, I am writing a letter and sending a list of EVERYTHING I tried and how this is my last option as well as attempting (prayer #2) to get my other docs to send something in as well.


Everything has to be difficult when it comes to me but I appreciate your prayers more than you will ever know. I cherish them and I know God is listening. Of course please pray for approval but also for my mental health if this doesn't get covered, I can already tell how hard that would be for me. I just want someone to help. I'm tired and I long for something, anything that will help and I don't want to be crushed ( If it goes bad I probably will anyway. Lord Jesus come quickly.) I'm a mess and need Jesus so please say a prayer for all of this crazy stuff but mostly for my soul.

Thy will be done

Surrendering to God's will is so incredibly hard. I want HIS plan for my life, not mine because He promises this and I want this.

I want His will to be done BUT of course not THIS will that's unfolding. As if I could pick things out of God's will that I don't want. I try and fail but keep trying anyway. A future and a hope is exactly what I need but I don't  want these blessings to come from sleepless nights and tears.



We are blessed for God's grace. When we doubt His plans, His will for us, His mercy and His response is to extend us infinite GRACE. This goes against everything we know and can fathom. Grace is Jesus's biggest blessing. He died so we could have a future and a hope. That future and hope that I try to pick apart in sin. Satan does have power and I think we forget this because we are so focused on the mightier power of God.


Satan makes us want to pull apart wills and our lives and sits there feeding us lies about God's plan for us and our needs and desires that we all will succumb to at one point in life. Probably multiple times. He will use all of his power to try to stop us from surrendering to "thy will be done." and he is good at it. Really good. I'm stubborn and I struggle with this.


I want the benefits of Thy will without the work. I want to bypass the hurt, pain, and feelings that God uses to get us to surrender. Can't we just skip the pain here God?



Obviously not. Lord come quickly. This is not my home.

secret thoughts...

I have been writing this for over a week and agonizing over sharing it, I don't call it secret thoughts for no reason but reality needs shared. This is life.



This is beyond hard and there are things I don't share with anyone at all. I hide a larger portion of my thoughts and feelings than you would think, I don't share my negative moments all the time.  It's time for me to give up my secret thoughts.




This journey scares me and digs deep. I question. God, how long? is this really it? How am I supposed to do this? I had hopes and dreams of a family and a life and I always imagined by 25 I would be married with that family I desire so much. I feel like this syndrome has taken all that from me. I mean God is going to have to literally plop a man in front of the invalid in the bed for any of those hopes and dreams and wishes to occur. I was always told that God will give me the desires of my heart and I thought I knew what that meant, I was wrong. let's just say this is not what I (in my broken mind) think the desire of my heart is. I have been learning that my desires are not exactly God's desires, God's desire is the one promised to me, not my family, love, health or any other earthly desires. This process  has been filled with so much heartache.




Heartache is basically a 24/7 thing as I lay here and look at these walls and stare at the stucco on the ceiling day after day after day. Knowing there is no cure and that I have exhausted my treatment options is crushing. This, right here could be my life for all my days on earth and I can't even begin to explain how scary, daunting, and just the deep deep dent in my soul that happens every time I re-realize it. We are talking daggers here. Some days the tears just don't stop.  I watch friends get married via post wedding facebook pictures because I can't even accomplish being there and it breaks me. Every time. It feels like the world is moving while I stand still, stuck.




I never would have imagined that I would be thrusted back into this world of illness again at all let alone all this. Relying on IV fluids, formula, and meds to keep me alive. The surgeries, the hospital stays, the ambulance rides, all of it. I thought it was behind me. Well, shows what I know. The blessing from my past is that I learned what NOT to do the first time around.  I now know throwing God out the window doesn't work out very well. In this war I am trying to continuously remind myself of what is true. He is my one and only source of hope, peace, and comfort. He guides me , loves me, and forgives me. He is the creator and sustainer of my life and I know He could heal me but I also know that He may not. That's the hard part because His plan is so unknown and through my eyes it is hard to see good coming from being like this. forever.


It's surreal that these are the only things keeping me alive.

It's reality though. I have to wonder what God is doing with this reality of mine. I find some comfort knowing the bible says that this is not in vain and I can't wait to see how it all fits together but for now I battle on one second at a time because that's all I can do, good thing that is all God asks me to do cause I just can't.

serving

I am reading this right now.  YOUR ILLNESS WHATEVER IT MAY BE IS HARD ON YOU BUT REALIZE IT IS HARD ON THE ONES YOU LOVE TOO. It's a lot to be a caregiver. Your problem is not only yours. Keep that in mind.

This book is incredible. It is filled with so much truth about trials, specifically medical ones and how to deal with them through the blood of Christ. It is a personal story of the life of Laura Story and her husband's battle with brain cancer. It's real and honest, and vulnerable. I appreciate her openness about the struggles of life. We all have them but normally we hide them away. If you hide them away it is hard to fully let God use you through it because He has a plan, the struggle is not pointless.  I am learning how to trust God by Laura's example and honesty. God is using their struggle to help others. We don't know what the Lord's plans are and in the moment it is hard to focus and give it to God but when we do hope is found.  It's convicting and has left me in tears many times because she GETS IT, most people don't understand how chronic illness effects the lives of those around you. Your illness is hard and you suffer but it's not only your problem, it is hard on everyone who knows you as they watch you struggle INCLUDING GOD.


Life is hard but would you rather endure it alone or give it up to the one who created you and loves you more than you can comprehend? After all, it's not about you.  This is about letting go allowing God to work through you and your suffering. There is something that has been weighing on my heart. She talks about her desire to do everything on her own and not let others help because that would inconvenience them and rather than admit that she needs helps she keeps going and it's just too much. I DO THAT. She refused to inconvenience the church people and would never admit that she can't keep going. After taking a step back she realized that the people from church who want to serve them are not just doing it for her, but for the heavenly kingdom. Again,  it's not all about you! This is about letting people reach out and serve you because in doing so they are really serving Jesus.


I struggle so much with this. I want control and to say I can do it all by myself but I have reached the point where it finally hit home that I need to surrender my independence and let others serve Jesus through me because it's not about me, it's about Jesus. It's time to reach out against my sinful will. Let it go control freak. Just let go.

Wisdom tooth removal

Praise the Lord. my claim was approved! God answers prayers! I have a few more things in this process that need prayer.

1. The nurse is going to talk to the doctor about when he is available for it
2. One of the requirements is that I have a pre-op visit with an anesthesia
3. matching up when he, the anesthesia’s and an open OR is complex
4. so regardless this will take longer than I had hoped  but pray for peace and comfort while I wait for all of the above to work
5. Pray mostly that it will not take too long to get everything in order , I’m just ready to get it over with.

By the way I just want to thank everyone who is praying and has been here for me because prayer can move mountains and is never in vain. Your support through this messy life reminds me time and time again that I am not alone, even if it doesn’t feel like your prayers are helping, rest assured that God hears them and is faithful.

updates and a prayer request for something this afternoon

So I figured I would update everyone about my crazy life on here more vs. facebook because I don't want to be one those annoying people who posts negative things and talks about health ALL THE TIME. For those of you who have been waiting for my test results, well, good old quest ordered a bunch of the wrong tests so I know absolutely nothing. I will never go to quest again because they always mess stuff up! So instead my nurse came out and drew the blood through the port yesterday and I am waiting for those results to pop up online and I will go from there.


Also I'm excited and a tad nervous because my doctor put me on Adderall  to see if it helps my brain fog because I'm loosing my mind like a dementia patient but I'm nervous about how it is going to make me feel. If you take it I would love your input.


Lastly my prayer request. Ahem I'm slightly ashamed but I need the prayers so here is the thing. I have a SEVERE phobia of the dentist cause of some bad experiences and I go in for a consult with an oral surgeon today and I have the following prayer requests.

1. pray for my severe anxiety that shoots my heart rate up to bad bad levels and drops BP, making me more likely to pass out.
2. because I am nervous it is already flaring up my involuntary movements, shaking and adrenaline dumping
3. This disease heightens everything so every sound from people talking and the drills won't be good, The light that they shine right into your eyeballs is the worst.
4. As you can probably geuss it's a whole plethora of all of my triggers at one time which makes me really sick

Lastly, with all this I cannot get any dental work done unless I am sedated AND everyone so far is too scared to give me anesthesia because of my POTS. It's a long, terrifying battle for me BUT I spoke with an office today and they have me coming in for a consult this morning at 10:15 and I need all the prayers I can get since I am already freaking out. Thank you all. You are all such a an encouragement to me.

no options...

I was told..again.. today that I am out of treatment options and we have to pick and choose what symptoms to treat without doing damage. I knew that already. It just doesn't get any easier to hear it and accept it without crushing my soul. I think with each doctor I see I go into it with a sliver of hope that they will have my cure despite the fact  that I know it probably won't happen. To date I have seen 3 neurologists, 2 cardiologists, 7 electrophysiologists, 2 primary care doctors, 2 GI doctors, 1 allergist, and 1 oncologist and I got the same answer of "I can't help you" from all of them. I'm at the frozen spot and I think this is where I have to learn to trust that God will do what He said and give me a hope and a future, I'm just not sure what that looks like yet.


I don't WANT to believe that exactly this could be what it looks like. It's a scary place but something I have to confront and learn to cope with whether I want to or not. I have questioned God on what we are doing here through all of this and now I wait on God to take this life that He created and do according to His plan. Perfect plan. It's a plan I really don't understand and it's a hard one but maybe one of these days I will learn to let go and let God, who allowed this, to be the one to give me what I need and drag me through it. You allowed it now it's yours. I can't do it so you have to.

requirements

"So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held"-casting crowns

Some days it is so hard not to give up. This disease and it's complications have taken everything from me except life itself and God. That's what I have left and it should be all I need but today the struggle is real, I feel like everything is falling apart while I watch it helplessly and alone. I have the head knowledge to know God won't let go and He is doing great things but my heart isn't along for the ride today. I know my life is in His hands and I need to believe that He is all I require. I don't require my independence, perfect health, people, or anything of this world. I require Jesus and only Jesus. He saves, loves, holds, creates, gives, takes away, restores, heals and provides everything for me.


I know that whenever He calls me home there is only ONE thing that will matter and it's Him. The things of this world will fade away and all of our needs will be met forever in a split second. It's a day I daydream about especially when I feel so defeated. No matter what my brain or my heart says there is hope to be found if I open my eyes and stop sulking for 2 seconds. I will be healed for longer than I will live. I realized this today and smiled as I thought about the fact that I won't always need tubes, medications, formulas, injections, hospitals and all these things that are keeping me alive right now.  Ports, IV fluids, IV Benadryl, blood pressure and pulse meds, seizure meds, blood thinners, calories in formula, pumps, and specialists have to be working in unison in order for me to get through my days.


None of this suffering was in God's intentions but a certain someone just had to be cocky and somebody else just had to talk to snakes. You just can't fix stupid. Well, Jesus can fix stupid and kind of already did; beaten and killed for our stupidity. Love overcomes. I can find hope in the fact that Jesus does not turn away from me even when my heart isn't in the fight and I'm wandering around in self pity. Like today.

irrational minds and what not to say to me.

I have mixed emotions on looking good and healthy and being told that.(insert don't feel guilty if you have done this here) when you have never had an illness like this you don't even realize that what you are saying and more so how we take your words. I'm just going to say it. I HATE WHEN PEOPLE TELL ME I LOOK GOOD it is only acceptable to me if ITS FOLLOWED BY I KNOW YOU DON'T FEEL AS GOOD AS YOU LOOK BUT IT"S NICE TO SEE YOU. You are not doing anything wrong but I am sensitive. It's me, not you. Your words are full of love, I know,  but when you are in this spot it doesn't feel like it. This will not sound rational..  cause it isn't rational but it's still a feeling. I have to admit if you haven't picked up on it yet that I am defensive in my writings. Let me just explain why really quick.

1. having someone say you look good even in love it will put a dagger through you because in reality you feel emaciated and on death's door step.
2. A disease that is all internal just makes you feel like you are being questioned all the time about it and  since people can't see it you feel the need to defend what you are going through internally and get it through to them that you are not ok and you don't feel healthy or perky or good by any stretch of the imagination.
3. I want vindication and when I am seen looking good it feels like that goes away. I feel like just because someone saw me not in bed, they automatically are pretty much saying there is nothing wrong with you. Since you can't see the internal chaos and I managed to leave my bed but feel horrible; it's similar to having doctors tell you that your REAL physical pain is all in your head, you made it up, you are crazy. and we don't treat crazy. It makes me feel like because I left my bed people will not take my disease seriously and will question and doubt if it is real and will think I am on the straight shot to recovery when I know that after my outing I will feel like complete death, while those who saw me think my day is fantastic. I realize how irrational this is but it's important for you to know.

 On one hand I mean at least I don't look like death all the time fortunately.  (thank you schnucks lady who approached asking if I need an ambulance while I stood with the cart AND I actually tamed my hair and was wearing make up for once. How nice of you to ruin my entire day, thanks.) Also, who does that?! I mean I am used to people staring at me because of my cane, port, walker, wheelchair, and the disgusted faces of those who see us pull into a handicapped parking space. For real the judgment is in the air. I imagine they are forming my entire life and all the possible reasons why I look like that. off one glance cause that's people do. I have adjusted to that.


My whole point is what am I supposed to look like? There is a disaster going on inside while I smile, say I'm okay when asked, say I don't need things when I actually do, hide the tears, hide my broken heart, hide my broken body, hide my bruises and hide feeding tubes and ports thus making myself look so much better than I feel. Just wait till I unhide tubes and then we shall see your real thoughts. For those that know me, please don't say it at all or rephrase it like I have above and it will be fine. Totally irrational but don't try to fix it for me, I am aware of how ridiculous I sound but I just have stuff to work on and this is one, bear with me here.

glory around the corner

1 Peter 4:12-13

Friends, when life gets really difficult, don’t jump to the conclusion that God isn’t on the job. Instead, be glad that you are in the very thick of what Christ experienced. This is a spiritual refining process, with glory just around the corner.


I was sitting and talking with my psychiatrist about a months worth of updates and she asked a rhetorical question of what now?


What now? I have been living this life of sorrow for over 2 years now and my nervous system is failing more and more everyday. This is my life. autonomic dysfunction consumes me but doesn't define me even when it feels like it. I basically stared at her and I had no words other than I don't know. I have a debilitating extreme (as all my docs say it's not usually this bad but I am treatment resistant, of course)  case of POTS and autonomic dysfunction.


 The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of Dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.


 Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, brain fog, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath.  Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position.


There is no cure. Here is what my quality of life is:


 Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure. The quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure.


I know this is lengthy but it helps you understand what I am dealing with a little more. Anyways, back to the whole what now issue. That question was a slap in the face because it made me realize that without a divine miracle this is and will be my life..forever...How in the world do you come to terms with this? You know that at some point  you will have to ACCEPT it and that alone feels impossible. To learn to be content and okay with having this and not live in constant depression means I have to do something. I have to find things that make me happy, that I can find pure joy in and things to look forward too. Right now, I know none of this. There isn't really anything for me to be happy about right now. Given all of this I am going to start seeing a Christian counselor and getting professional  help to learn these things.


Next Thursday May 19th I will be seeing this counselor and I ask that you would pray for me as I begin this treatment and learning how to put hopes in the right places. It's like what do I put my hope in now? Yes, I know Jesus. So easy to say not so easy to do and this is why I need help and why I need your prayers as I start another phase of this journey. This long, not an end in sight journey. I know this won't be easy but I know that even in my darkest days I am not alone and He knows what I need it and has the power to heal my breaking heart and already broken to pieces body.

EVERYTHING.

Today has been one of those days where I cry about ev.ery.thang. It's rather pathetic and ridiculous. Multiple times because I used to be really good at spelling and I have to look up the simplest words and let Google spell for me. Then there is the never ending shower thing. Also, because I didn't have the strength to dye my hair and it badly needs it. I can't put my clothes away. I almost fell over the air like 5 times and freaked out since a fall could kill me. Cried because I can't drive and I have lost almost all independence. waiting for my doctors to get meds to help my cognitive self leaves me in tears like every 5 minutes because I should have a brain, I used to have one. I have amazing doctors but I think they all need a Xanax today or something. I need a Xanax today too apparently. Song lyrics make me ball my malfunctioning eyeballs out. I woke up with calve pain and I may or may not be freaking due to possible blood clots. I fear my doctors won't agree on a plan to help me. I cry because this gets worse every single day and I am helpless. I can't think of a part of my body that isn't affected by the monster that has NO cure. and cry some more. Life is hard. My faith is beyond tired but I know where my help comes from. If you would have asked me that during my last sickness I would not be having it, in my mind God failed me. Through that I learned that um life without God is the MOST HOPELESS, DESPERATE, SAD, and LONELY place to be. He is my rock on days like today where hope is fading and I could not be anymore thankful for a God who SAVES. Here is a song lyric/prayer that goes so well with how I feel right now.





Should I just give up?
Lord, I need to hear You speak
Tell me I am loved
Tell me I am known
That You died for me
I am not alone
Tell me I'm Your child
The one Your heart beats for
I can find my strength
Knowing I am Yours
You've always known what my heart needs
And You tell me
You wrote Your name upon my heart
You knew me before my life began
You still have a plan
And when I'm starting to forget
Jesus, You tell me who I am
Who I am

new news. new fears.

I don't share every single symptom and trial within a trial because I would be whining and complaining and driving everyone crazy because NOBODY wants to hear about your health 24/7 and I don't even want to talk about my health 24/7. I have POTS but I am not POTS, I like to talk about normal stuff and what is happening in the lives of others. It shows me the world is not just me in my pity room.


I have a few things to share after speaking with my doctor that moved to the VA hospital and for free she gives me advice and Lord willing she can get somewhere with my docs here (I will explain that shortly)


 For months I have had severe joint pain that wakes me up in pure agony in the night and can last 5 minutes- 2 hours. The joints get sore from just walking as well. My reflexes have gone away except for my right arm, my muscles have become too loose so it's causing me to throw my back out, suddenly collapse and constant aching. I also have cognitive issues that just keep getting worse and worse. My voice slurs and has become even quieter than normal, I can't remember anything like we could be having a conversation and all of a sudden I forget what I was going to say or I forgot the topic of the entire conversation. I also forget conversations that occurred 5 minutes ago, I invert and jumble words and use the wrong word ALL THE TIME, all of this has made communication a very hard thing for me. I don't even like talking anymore because I will forget everything.


sooo my doctor said (and I quote)
" I think you have a severe case of the brain fog that goes along with autonomic dysfunction and the same thing  with the muscles, I recommend Adderall and b12 shots."


Well, this is where the problem arises and all I want to do is crawl in a corner and cry. My primary care doctor so refusing both of them. It is a controlled substance that must be hand given every month. She is in fort Leonard wood and everything she wants to do has to be orchestrated through my doctors here. I am now on a hunt to find out if I have a doc that would help and all I can do is pray one will agree to it and that the doc that wants to order this stuff will remember and be able to call around with my doctors so we can get treatment started asap.


The issue is that the longer I let it go the worse it is going to get and I really would like to keep my sanity. I'm frustrated, sad, concerned, and nervous. Overall I feel defeated and anything and everything is getting to me. I just want someone who will help me. These are doctors helping is what there job IS but in modern healthcare $$$ is more important. I just need as many prayers as possible that this would get worked out and for my emotional state because it is taking a major toll on it.

paths

Music and lyrics just have a way of reaching my soul like nothing else.  I reached the point months ago where watching the tv with it's flashes and stuff overstimulates me to where I have to turn it off and reading is getting harder as everything blurs together. This is where music comes into play. Not only does it provide mild entertainment but it keeps me focused on God. It is kinda hard not to focus on Him when that is what you surround yourself with.


I am really one of "those" country music fan sorta people but there is an obvious disconnect and change in my emotions when this is all I listen too. I find myself crying more, loosing hope, and turning away from God. It is just how life works, you will always be influenced by what is around you. If drinking, sex, lies and relying on fallen people for your every need is how you choose to live your life, your soul will be downcast. Hope and peace is not found in any of that. It's really a perfect recipe for disaster. If I surround myself with things of this world then that is exactly what I will receive, things of this broken, cruel world. I have had my own share of that world and it can drop you to your knees incredibly fast and leave you searching for a way out.


INSERT TRANSITION THAT I DON'T HAVE THE BRAIN POWER FOR HERE.




There is a way out available to you though but it is a ONE way, no through street drive. I am the worst at navigation, always have been. My dad could probably tell you many stories of me calling him because I am lost. I have a tendency to believe that "this different road will lead me to the same place as my usual route". Wrong. So wrong. I remember one time, late at night,  I ended up in a gated community and I pulled into a driveway to call my dad and the neighbor just stared at me the whole time and then he went and got a flashlight and started walking up to my big, blue, falling apart mini van as my dad and I were trying to figure out where I was at and how to get home. Talk about feeling vulnerable! I rolled down my window just a crack so I could hear the man as he asked me who I was and informed me that I need to get out of the community right NOW. I told him I was lost but he would not help me and repeated the part where I need to exit the subdivision right NOW.


I did. Really quickly. Still lost but I didn't feel like a standing target as I drove around, trying to find a street that I was familiar with or really any intersection names that my dad could google map. Eventually, I made it home where a feeling of safety, and comfort hit me the minute I saw my house. I may have balled my eyes out when I arrived there because I knew that could have gone another way. When you stray from a "safe" path, you are left out in the open, exposed and vulnerable to attack. This life is a really long path and we can choose how curvy, narrow, or trafficked this road is. Through the cross, I have no fear of the end of the path, I know exactly what awaits me in the distance but I don't know how each step and construction of said path will lead, as I journey to get there. It is my choices that make up the concrete that composes this path and satan is like the clueless construction worker that can destroy everything with one move. I am so thankful for a God that can restore everything with one WORD when WE CHOOSE to call out to Him.


p.s- GPS's save lives. Legit.

meet me in despair

"Just Say Jesus
Whisper it now, or shout it out
However it comes out, He hears your cry
Out of nowhere He will come-you got to believe it
He will rescue you
Just call out to the Way, The Truth, The Life"-just say Jesus

Some days are just hard. I am so thankful that He will still come to our rescue when we don't have words. I know He uses this trial to help and show love and it's for my own good but it is hard to imagine how this situation could be for good. I can't imagine it but it happens anyway. Resting in the unchanging character of my God to save us and not condemn us is not easy. Should be but it's not. So far today, I am not doing so great at it but grace beyond my comprehension was laid out for me on a cross and He will meet me where I am.


I was thinking about the fact that He willingly meets us where we are and how incredible that fact is. That didn't just happen when He was fully man and on the physical earth, it happens now, it happens today, it will always happen. He loves us enough to meet us in our sin, heartache, and tears. He meets me in my despair when He doesn't have to. Have you ever walked alongside of someone in despair? It is hard because we don't want to hear it, we don't want to be brought down and shown the fallen world and it's people, we want to continue pretending that life is 50 kinds of peachy. Sitting with someone in tears because of the hand they have been dealt and trying to comfort them is just hard on the heart and nobody enjoys it.

Love. It's love that makes this hard. We don't want to see despair because we are capable of love and compassion. Now, take the person you love the most and imagine holding them as there world falls to pieces. Take that love and magnify it by 20,000 and then imagine the heartache. This is how much Jesus loves each and everyone of us, He walks alongside ALL OF US in our despair. The heartache is unimaginable. The kicker is that He doesn't have too, He could stay in His world free of pain, sorrow and tears but He doesn't. He meets us where we are anyway. He takes on the heartache without a thought of regret or a desire to turn away and pretend it isn't happening. It's the entire fallen worlds despair at once and continuous. It's continual grace and mercy. We aren't even capable of that because SOMEBODY JUST HAD TO HAVE AN ATTITUDE. Ahem. One day the attitude will be crushed and the world healed and He will no longer have to endure the heartache because those who believe will be right next to Him. Trust me, you want to be there and not with Mr. superiority and all that comes with a superiority complex. Ick. 

excursions can be deadly

I was recently asked why I don't go places, when I probably could...instead of laying in bed all the time. Others with my condition get out and do stuff despite it and I think that is what they were getting at.


Church is hard for me not all from a getting up and going situation but more of an issue of what happens when I am there...or anywhere really. To answer said person's question, when I am out of my house there is an amazing amount of stimulation happening all around me. Due to the Dysautonomia portion of my illness this stimulation sends everything into a flare up making me so sensitive to every sound, movement, and motion. I have to wear sunglasses when I am out because the sun sets it off, the sound of the cars around me seems magnified, the motion of the car is like riding a speed boat, the sight of the commotion makes my head spin and the act of being around people makes me exhausted within minutes. I am more sensitive on some days than others but in general when you put all of these things together I go downhill so fast, everything spins, my hearing goes bye bye followed by my sight fading away and then down I go.


If I am in a wheelchair or using my cane or walker I am always fighting so hard to keep things under control that I often have to lay my head down because the feeling is like being on a rollercoaster and zaps any little bit of strength I had to just keep my head up. I know people go out anyway and on occasion I will pretend to live a normal life and suck it all up and go places. You have too. Walls close in, you start talking to your cat and it talks back, you are on a direct path to insanity. Here is the root of why I don't take more risks: if I pass out it is a matter of life or death. Others can go around passing out places and although it sucks and is a horrible feeling they usually have no permanent damage. Due to high dose blood thinner injections, if I pass out and hit my head there is a 96% chance you will never see me again. My doctor tells me to crawl to places if I have to as he drills in the fact that a tap on the head can cause a brain hemorrhage and my only hope is to get bags and bags of plasma but in reality he says I probably would not survive long enough to get plasma and that if I survived I would need immediate brain surgery which would likely end in the surgeon just standing there and watching me slowly bleed out and die and he is helpless to do anything. This HAPPENS PEOPLE. Every time I see my hematologist this is said at least 3 times.


So, yeah I could take risks but I am not willing to take such a risk with my mortality at stake. It's not worth it. Everyday I have to make a choice based on how I feel of what I can or cannot do that day and it's a fine line. I do my best with this hand God dealt me by being smart about what and when I do things. So, said person there you go. My explanation that I did NOT owe you but you got it anyway.

It always has to be something....it's what I do.

mmmm yesterday. Let me vent about yesterday.


Sometimes I just need to go back to bed and pretend days didn't happen. I legit have the worst "luck" ever. I have life witnesses that see it all go down. It's true.


 1. I missed my doctor appointment yesterday because I got the time wrong.
 2. I then had an experience with the worst waitress I have ever encountered.
 3. I hate rain. It rained.
4.  My kitty had to go back to the vet for like the 4th time and has a UTI so he got an antibiotic injection and they are going to culture his urine to see what the bacteria is composed of. It could be that as the kidney stones and sludge is breaking down from his new diet; the breaking down process can cause UTI's because at the center of all these things is bacteria.
5.  Also, he might be antibiotic resistant and that's why he isn't getting better while on antibiotics thus the culture to test which antibiotic works.
6.  $$$$$$. Now I got a cat to avoid paying so many vet bills like you do with dogs. Didn't work out in my favor.
7. dropped my credit card in a puddle under the car, in front of the wheel,  thank you Jesus for the BFF finding it.
8. Cat pooped in his carrier. In the car. while it was raining. windows had to be opened because fumes. Wet car.

9. my nurse broke off a piece of my feeding tube adaptor. I called the doctor and spoke with the clueless nurse who couldn't understand that JUST the adaptor that comes on and off needs replaced.

 She thinks the whole thing will need to be replaced soooo at 12 I have to go to the surgery center to decided what needs to be done. Even if the ENTIRE thing needs replaced she said it doesn't require sedation. psshh please. This whole thing removed without anesthesia. uhhh no. As you can see it is just that little spot that says adapter that needs changed.

 it's a hole in my body, no sedation for the entire thing removed. I need smart humans to deal with my issues. So that is going to be my afternoon today. Oh goody. Just what I wanted to do.

vulnerable men rainfall

I had dreams. I had a plan laid out for my life. I had a general idea of how everyday would go. I had a job where I could tangibly be able to help people. I had a rental house and a roommate. I was loving living on my own more than anything. I could get out of bed and feel refreshed. I was working out at a gym for the first time in my life and I loved it. The list really could go on forever.


As you can see I had my path of life planned. In a minute it was torn away. I know God gives and He takes away all for my good but honestly I don't see or feel the good in my life right now. I am tired of this syndrome and worn out by life. As you may have noticed the letter "I" so many times. I have to remind myself that my plans are worth nothing because this life is not mine. It is Gods therefore everything that happens in this life He is a part of.


He knows my biggest dreams. I will be vulnerable for a moment; all I have ever wanted and dreamed of is to be a mom. I want this more than anything. I feel like this syndrome is taking that dream away from me. I struggle with the fact that my odds of finding a man that will take all of this on will take a miracle. I struggle with the thoughts of "how could I ever even meet a man while laying in bed and not leaving my house." I swear God would just have to plop the guy he chooses in my room in order for this to happen. Miracles happen right? uhh on second thought men plopping in my room is a horrible idea, creepy as can be. Lets just scratch that method and go with a miracle done in whatever way God chooses to do it. (but please God don't send guys falling like rain to my room. please and thanks)


Let's just say, I can almost feel my biggest dream fading away. Nobody wants all of this nonsense anyway. Maybe, that is not in God's will for my life, the thought crushes me a little bit but not everybody is guaranteed a spouse and a family. So there you have it my vulnerability. Major One that I rarely share. Please pray for peace and contentment  in wherever this life leads. I am struggle with my life in general and could use more prayers than ever before.

"We Believe"

In this time of desperation
When all we know is doubt and fear
There is only ONE foundation
We believe, we believe
In this broken generation
When all is dark, You help us see
There is only one salvation
We believe, we believe

We believe in God the Father
We believe in Jesus Christ
We believe in the Holy Spirit
And He's given us new life
We believe in the crucifixion
We believe that He conquered death
We believe in the resurrection
And He's comin' back again, we believe

So, let our faith be more than anthems
Greater than the songs we sing
And in our weakness and temptations
We believe, we believe!

We believe in God the Father!
We believe in Jesus Christ!
We believe in the Holy Spirit!
And He's given us new life!
We believe in the crucifixion!
We believe that He conquered death!
We believe in the resurrection!
And He's comin' back again!

Let the lost be found and the dead be raised!
In the here and now, let love invade!
Let the church live loud our God we'll say
We believe, we believe!
And the gates of hell will not prevail!
For the power of God, has torn the veil!
Now we know Your love will never fail!
We believe, we believe!

We believe in God the Father
We believe in Jesus Christ
We believe in the Holy Spirit
And He's given us new life!
We believe in the crucifixion!
We believe that He conquered death!
We believe in the resurrection!
And He's comin' back,
He's comin' back again!
He's comin' back again!
We believe!
We believe 

the end times dream

I had the oddest dream I think I have ever had on Saturday but it has given me so much comfort in my little world of unknown crisis. I am going to attempt to explain it.


I was with a group of believers in the woods hiking to a waterfall and all of a sudden the ground shook. Whoa earthquake of major proportions. Except not. The ground then begin to crack everywhere separating the people I was with from each other and we panicked as we looked around. At that moment we realized this was more than an earthquake and instant peace came over all those who believe as we watched unbelievers panic as they started falling to there death's in the giant cracks in the ground. You could barely hear the fearful screams as the ground continued to shake, violently. Amidst the terrified screamed those who believe had complete peace. No sense of sadness or compassion for those who where dying. It was like we could see the justification for it. We had only peace and oddly a sense of excitement as we realized this was it. What we have been waiting for.


Trees began falling everywhere killing thousands but never touching one believer. Instead of being  fearful we stood in awe and watched the pure power of Jesus as He returned like He promised. All of a sudden the trees stopped crashing to the ground and the earth stopped cracking and all that could be seen was a bright white light and angle wings. It was an angel with wings more massive than I ever would have imagined. We listened as he spoke to the unbelievers and said that God has chosen to have mercy and give those who refuse to believe one last chance out of pure grace. Just as quickly as the angel appeared he was gone. When all the earth movements and crashes stopped you could really hear the screams of terror. It was like nothing I've ever heard before. Constant shrilling and an obvious sense of fear like no other. (also, everyone knew and believed in heaven and hell.)


We carefully went around sharing the fact that they can be saved. The angel just said it. We stood amazed at the pure refusal and argumentative statements that these people who we were trying to save had. We where in shock thinking that surely in this moment that all would turn and believe given what they had witnessed but the majority refused. We knew they were going to hell but instead of having deep sadness over it like we do now it was  accepted as a justifiable fact that contained no sorrow. This went on for at least 30 minutes. All of a sudden the loudest burst of thunder roared from the sky as it turned pure black and you could only see by the light given of by the lightning that was striking the earth and individual people. The rain poured followed by hail the size of cars. The lightning and hail were killing off the unbelievers faster than we could comprehend.


The amazing thing is yes, we as believers were a part of this BUT not one piece of hail or lightning ever struck us. The earth started to crumble all around us and all of a sudden we were encompassed by a white light brighter than anything I have ever seen or heard of and the shrill screams of horror stopped and all that could be heard was "for it is by grace you have been saved"


Then I woke up. Like stunned. I literally laid there thinking about it for a good 30 minutes and the more I think about it the more excited I get. I am ready to go home where I belong. This earth is not and never will be my true home. For anyone that reads this please reach out. I am not saying my dream is even close to how anything is going to go down, God did not directly speak to me, I am not crazy, it is just a dream. A dream with a meaning. Don't wait. You can be saved. It is not too late but it could become too late if you do not seek the God, who created the earth, created you, and has the world in his hands. He ordains your days, you don't so please reach out to Him. If you do I promise you will find Him.


¹² I have spoken to you of earthly things and you do not believe; how then will you believe if I speak of heavenly things? ¹³ No one has ever gone into heaven except the one who came from heaven—the Son of Man.^{[e] 14} Just as Moses lifted up the snake in the wilderness, so the Son of Man must be lifted up,^{[f] 15} that everyone who believes may have eternal life in him.”^[g]
16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. ¹⁷ For God did not send his Son into the world to condemn the world, but to save the world through him. ¹⁸ Whoever believes in him is not condemned, but whoever does not believe stands condemned already because they have not believed in the name of God’s one and only Son.--John 3:12-18

The name of Jesus

I'm so glad God made people to create music. So much truth can be found in lyrics. This made it's way into my soul today, it describes exactly how I  have been feeling and gives me a truth to rest in.

"when my hopes and dreams are far from me and I'm running out of faith,

I see the future I pictured slowly fade away, 

 when the tears of pain and heartache are pouring down my face,

 I find my peace in Jesus name"

My life has changed so much since POTS worked it's way in. God is literally the only thing that didn't change. I struggle everyday with what my life is and will be and feeling like I have to give up on everything I hoped and dreamed because it isn't plausible with this illness. This is never what I would have seen or wanted in my future. It brings me to tears at least once a day and it is so hard to truly get to a place where I can say that this is okay and accept it with the knowledge that God is in control. The only way I can even begin to accept this and honestly say it is okay, Your will be done, is through God. I sure can't do it alone, I've tried, didn't work out so well. Even Jesus asked for a plan B, a way out of what He knew was to come but He surrendered it all. Surrender. Yeah that. Super hard.

Finding my peace in the name of Jesus is my battle goal. It is not to be found in my hopes, my dreams, my future, my past, my present or my cure. I know a lot of people with a chronic illness who live like they will only be okay if they can find a cure. The thing is, you are not guaranteed that in this life. I learned that a long time ago. You will never be content, or joyful, or peaceful in your entire life if that is the only thing you put your hope in. You can't be. You will be constantly chasing after everything you hear that could bring a cure regardless of how implausible or ridiculous it may be. I am not saying give up on a cure, I would never say that, what I AM saying is a cure cannot be your everything. You will only find disappointment and pain this way.

I am trying to reach the point where I can honestly say that I surrender this to the One who made and saved me. I am not there yet but I am working on it.  Just because I know what NOT to put my everything in does not mean that I don't do it. I fail. I battle, I fight God's will. Satan has tainted me and he is really good at  making life extremely difficult for us with the goal of tearing us away from God and the truth but when all is said and done I know who will win this, My God. That's who. We CAN find peace in the name of Jesus, it may not be easy but it is completely possible because by grace we have been saved. (and repeat. forever.)