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.