Decline

I feel like I am in a nightmare that I can't wake up from. The last couple of weeks my health is going in the wrong direction... and with another surgery coming up I have to be cleared by all of my doctors and the pre-op department at mercy on March 15th.

Also, my new port is malfunctioning more than the old one (of course) but my surgeon doesn't think I should have it in the first place. I now have to find a new surgeon who will take my case (takes miracles for all of that)

Nobody really wants to treat me. My old doctor who moved is as close as I get to having a specialist in this field and our communication is spotty. I have no where to turn because when things go wrong I need a specialist to consult with and see me and I don't have one. I have seen so many doctors but none of them agree with my current treatment, they want to pull feeding tubes and take my port out because I don't need it. --they ignore the fact that this treatment is really the only thing that keeps me from passing out all over the place. I can't be doing all that because if I pass out and hit my head there is a good chance that I would  bleed out. My hematologist reminds me of this every 4-6 months because I am high risk.

This leaves me stuck with no doctor to treat this and in these moments where I really need that help and for my specialist doctors to communicate but that is close to impossible. Each doctor only treats it's one body part instead of the thing as a whole. right now I feel so defeated, stressed, sad, and frustrated that I want to give up on all doctors because all they do is send me to another doctor that says they can't help and sends me to a new one who says the same thing. I am just tossed  around but getting nowhere.

I lost it last night. I want all this to go away  but for now this is God's plan for me and I am not fond of it. honestly. It is hard to believe that God's plan for my life is filled with so much suffering. I don't feel like God is here right now but I know He promises not to abandon us and I will cling to that all of the days of my life. God's unbreakable promises are pulling me through this whether I feel it or not.

valentine's

 As a woman who has always been single valentines day does not mean much other than a little sadness thrown in there. I don't know God's plans for me but I want to share with you something that stills my heart just in case you are in the same boat. Valentine's day is that one day where you are obligated to make your significant other feel special. We all like to feel special sometimes.


Guess what? You don't need a significant other to love you.  In God's eyes you are and always will be the most special person that exists, there is no pressure, no dating, and no sadness involved here. He loves you more than any human can and I think it is important to not loose sight of this fact. YOUR HEAVENLY FATHER LOVES YOU MORE THAN YOU CAN FATHOM. That is special. The best kind of special. He is yours and you are his automatically upon belief and will always be no matter what.


Humans can let you down and leave your heart shattered but the love Jesus has for you never fails. It's one of a kind. Having said that we do have feelings and emotions and yeah valentines day is not exactly my favorite holiday but every year for as long as I can remember my dad has returned home from work with not only flowers and gifts for his valentine (my mom) but includes me with my own flowers and chocolate EVERY YEAR. Fathers, I would encourage you to do the same with your own daughter's, it is something that I will always cherish and never forget. Self-esteem is a struggle for me and I am sure for others as well but having that someone regardless of who it is remind you that you are loved no matter what point in life you may be in helps to fill that void that society protocol leaves you with.

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.