acceptance

I realized today just how much I compare my current life to the old one. My "old" life is gone and it won't come back. This has changed me forever, even if my symptoms improve and I can function again it will never be the same as it was. It was a fun Epiphany. I realized that this is my CURRENT life so there is no point in making myself miserable by remembering and thinking about the things that I used to do and I can't anymore. Yes, I know I am allowed and should grieve with each blow this p.o.t.s gives me but I think I have passed that allowance and now need to pick myself up and accept and embrace my new life and leave "before I could do this" in the past. It's done, its over and it sucks but I like to think God is doing something big through this trial number 5,000. He was and is and always will be faithful but please pray for me because not comparing and accepting a new life that I never asked for or wanted is so hard but here I am.

He knows

Finding comfort in this today song today. (you have to click "he knows") It is one of those days I can't get out of bed and on these days iTunes becomes my bff and keeps me focused on God through my "worship" playlist. I really do rely on music to get me through this and keep my focus on God and not the things of this world. I don't know what I would do without it. God gives us the little things such as music to get us through each day and I am so thankful He doesn't abandon.

doctors and sarcasm

I choose to handle my life issues with sarcasm instead of um everything else but doctors just don't catch on a lot. My doctor walks in today and goes "so, blood clots huh?" and I said "oh yeah it was fun" He stared at me for a second before saying no, that's not fun. He then proceeds to explain my potential for death if I fall being all serious and stuff and I am sure it looked to him like I don't understand the serious nature of my current state but when you have been through so much in life that hearing the risk is an opportunity to joke or cry and I joke. I am very aware of the serious nature of having POTS and being on blood thinners but I am not going to sit here and panic because in case you haven't noticed, God has saved my life so many times and I don't think He is done with me on this earth yet.

I was told that if there is a remote possibility that I could pass out I need to crawl from bed to my destination. I am sure that would be a sight to see as I slither through my house. He basically said if I fall and hit my head on anything it would be a race against the clock to pump me full of plasma to make my blood clot before my brain swells and well death occurs. I know my reaction was not what he was expecting but ya know God can overcome anything that comes out of the doctors mouth so I had no reason to freak out. I guess it comes down to the fact that I have had so many near death experiences that God has pulled me from and I believe He will continue to do so until He is done with me so, yes I am in a SERIOUS condition but God is bigger than any life-threatening event. I know I haven't told anybody the full extent of the danger I am in but it is why I have had to turn down many hang-out moments in order to avoid death so anyone that I have turned down you now know the "real" reason for it.

Regardless, God is good and in control so I will not fear my situation and I am excited to one day see His master plan and how all of these bad pieces of my life connect but for now it's one step at a time.

Nervous system controls

I get asked a lot what the nervous system controls so here ya go:

The autonomic nervous system (ANS), also known as the visceral nervous system and involuntary nervous system, is a division of the peripheral nervous system that influences the function of internal organs.[1] The autonomic nervous system is a control system that acts largely unconsciously and regulates the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. This system is the primary mechanism in control of the fight-or-flight response and its role is mediated by two different components.

All of this is supposed to be involuntary but mine does what it wants and when it wants so all of my symptoms involve one or more of the above. So, any of them could get thrown off at any point and go crazy, leaving me stuck in bed. It controls a lot more than people think and that is why my symptoms aren't consistent.

faith and trust

"I am not skilled to understand

What God has willed, what God has planned

I only know at his right hand

Stands one who is my Savior'- my savior my God

Since I live day to day and week by week I will tell you about this week. First of all, I had 3 horrible days but I don't want to focus on that right now. I have been given blessings beyond what I could have imagined for my current physical state. I am learning just how much God gives even when He is taking things away from us. He takes things away for a reason and I have begun to get more and more God given glimpses into His master plan for my life and this trial. I find peace in what He has given me by providing me with so much support from those around me and at times I can just feel Him saying "I got this. It will be okay. It will end. I am He." Faith and trust are two very different things that I feel like people lump into one. I have complete faith in my God, He is faithful and has never failed before and never will but what I struggle with is trust. Trust as in a reliance that won't be shaken. I fall so short when it comes to allowing God to completely take this trial that He has allowed in my life and do with me as He pleases.

Every time I get knocked down in this journey I come back up with a tiny bit more trust (reliance) on God to handle everything. Having faith is the easy part but we are also to trust in the one who granted us life and gives and takes away. I have no clue what is happening with my life and to me it feels like it is falling apart but I have faith He will pick up the pieces and put them together how He designed it to be. I can pretend I got it all together until all the grandmas in the world get hit by reindeer (it was oddly the first thing that popped into my head. Don't judge me!) but the reality is I have nothing. Separate from God I have and I am nothing. A lost person searching for home. I cannot heal myself and I must develop the trust to where I have faith that He is doing all of this for a reason and has a plan for it all even if it is not healing on this earth.

God has worked in some super mysterious ways in my life up until this point and I have no reason to think He will stop now. I made it through another week and that is something to be thankful for. God is good even when we don't feel Him or trust Him; that faith that we found God with is still there as a gift if we choose to us it. I am done sulking in self pity now and have decided to open that gift and see what God has in store for my life no matter how different it may be from my personal hopes and dreams. My life is God's story, not mine so let's do this.

overwhelmed

Today began with an emotional breakdown. I have lost my will to continue fighting this every day; I have no strength left in me to even begin facing today with more of the same. I am done. Rock bottom. I could never be more thankful that God is walking this path with me because He is going to have to carry me through right about now. I am at the mercy and power of God. Thankfully, He doesn't lack anything and He is able to pull me out and give me the will and strength that I need to carry on. I know He can and will do so in His timing and therefore I have hope. God is the definition of hope, without Him we would sulk in our weakness until this life is over but we don't have to because of mercy and grace. Those two things I will just have to rely on and remind myself multiple times in order to put one foot in front of the other but with Him all things are possible and I will fight and ultimately win even if it is not in this earth.

faith

Lyrics for What Faith Can Do By Kutless



Everybody falls sometimes

Gotta find the strength to rise

From the ashes and make a new beginning

Anyone can feel the ache

You think it's more than you can take

But you are stronger, stronger than you know

Don't you give up now

The sun will soon be shining

You gotta face the clouds

To find the silver lining



I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do



It doesn't matter what you've heard

Impossible is not a word

It's just a reason for someone not to try

Everybody's scared to death

When they decide to take that step

Out on the water

It'll be alright

Life is so much more

Than what your eyes are seeing

You will find your way

If you keep believing



I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do



Overcome the odds

You don't have a chance

(That's what faith can do)

When the world says you can't

It'll tell you that you can!



I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do

That's what faith can do



Even if you fall sometimes

You will have the strength to rise

Last night into today has been so hard. I have felt so sick and if I wasn't so stubborn (wonder where that came from haha) I would probably be in the hospital right now due to all of my symptoms and almost passing out about 20 times last night. I have basically been asleep all day but when I am awake, it is not a great feeling. I am trying so hard to avoid the hospital and Lord willing, I will. This disease takes a lot from you but it does build faith because that is all you have left to turn to and it can never take God away from you. Despite how hard the last couple of days have been I can look below at God's promises and protection and find peace through the suffering. It is not gone by any means but my heart and soul are uplifted to help handle whatever God has in store for me next.

Psalm 11:1-4 (commentaries)
David was forced to flee for safety several times. Being God's anointed king did not make him immune to injustice and hatred from others. David fled, but not as all was lost. He knew God was in control. While He wisely avoided trouble, he did not fearfully run away from his troubles. Faith In God keeps us from loosing hope and helps us resist fear. David was comforted and optimistic because he knew God was greater than anything his enemies could bring him.

Psalm 11:4-(commentaries)
when the foundations are shaking and you wish you could hide, remember that God is still in control. His power is not diminished by any turn of events. Nothing happens without his knowledge and permission. When you feel like running away- run to God. He will restore justice and goodness on the earth in His good time.

Psalm 11:5-(commentaries)
God does not preserve believers from difficult circumstances, but He tests both the righteous and the wicked. For some, Gods tests become a refining fire, while for others they become and incinerator for destruction. Don't ignore or defy the tests and challenges that come your way. Use them as opportunities for you to grow.

Psalm 23:4-(commentaries)
Death casts a frightening shadow over us because we are entirely helpless in it's presence. We can struggle with our other enemies -pain suffering, disease, injury but strength and courage cannot overcome death. It has the final word. Only one person can walk with us through death's dark valley and bring us safely to the other side-the God of life, our Shepard because life is so uncertain, we should follow this Shepard who offers us eternal comfort

Psalm 23-5-6:-(commentaries)
In the final scene of this psalm, we see that believers will dwell with God, God the perfect Shepard and host, promises to guide and protect us, through life to bring us into His house forever.

https://www.youtube.com/watch?v=hmXoLGK0MJg

autobiography

I knew when I began writing my story that it would be hard due to everything that has happened and to put it in book terms but what I am finding more difficult is having to go back and "re-live" my past. Even though it is over with and so far in my past it is still fresh in my mind like yesterday. Re-living each day, step, procedure, time in ICU or surgery is proving itself to be more difficult than I expected. I thought I had made peace with the past and everything that God brought me through but apparently it is still an open wound that I avoided and pushed so far back in my brain that I never really faced it since getting better. I am now forced to face it and wow it was so hard and the thought then was that it would never end and I would be like that forever is the conclusion that I had come to. I pushed God away and made my way through a two year battle that I would never wish on my worst enemy without total help from God. This is going to take awhile to write because as one writes they re-live the events and it brings them all to the front of your memory to be dealt with. This will be a journey but one that I am finally ready to face.

depression

Depression has a way of being sneaky and then coming out of no where to strike. I hesitated to make this post because it is so personal, blunt and real but then I realized that is what believers should be doing in the first place.(despite anything I say I am NOT suicidal)no happy face boxes going on over here.

Depression has been attacking me all day long and is slowly breaking me. I want this to be cured, my symptoms to go away, my pills to go away and basically everything related to POTS to just disappear. I long to be In heaven with such desperation and to finally get a fully functional body. I want Jesus to come back RIGHT NOW. I'm beyond overwhelmed right now with this life/existence I am currently in that I just want to cave in and give up on everything. I am so tired of trying to make it through each day. It is the same suffering as the day before and will continue until God says it's over.

I feel lost with no desire to do anything at all and I am struggling to reach out to God and let Him take over without me taking it right back. I know God has and will continue to give me the strength I need to make it through each day even if I am dragged along or must be carried; He will be here. He will be here in my doubt, pain, hopelessness, sadness, and the moments of joy that come up suddenly. I don't feel God here at all right now and it is kind of a scary feeling but I know He is listening and will be there to catch me if I fall and will give me whatever is needed to conquer my doubt, pain, hopelessness, and sadness. He will be with me in those rare moments where I find joy and He uses those to carry me through to the next day.

I am struggling a lot right now mentally so please pray for the peace that surpasses all understanding.

valleys of life

Today has been hard, this syndrome takes so much from you and I am longing to live again. I want to drive, go back to the gym, walk around, go out places, stand in the shower, do my own laundry and put it away, clean out my closet, feel like a girl again, and be able to walk up stairs without feeling like death. There is so many things that people take for granted when at any point they could be stripped away. I just feel so lost in a world that keeps on going all around me and I can only sit and watch it happen. I am not content in my circumstances by any means and all I have left is to reach out to Jesus who can carry me up this valley. He is everything I need. In my cranky, life sucks moments I KNOW He is here and carrying me up the valley and the mountain. I don't have to feel Him to KNOW He is with me even when I feel alone and trapped in my malfunctioned body. My body is failing me again but it is such a comfort to know God will never fail. I am trying to focus on what I know and not what I feel in this moment and drag out the truth in every circumstance I am left with.

fb convert!

I know God has my life in His hands because it has been proven over and over ever since birth. I have had so many near death experiences and God chooses to keep me on the earth for a purpose, I may not understand the whole picture but it is part of His plan for me; it's a perfect plan in His eyes. I have had one occasion when I was 17 I think where I gave up and decided God left me and I can't do this life anymore. I will only give details in person and you are welcome to ask, I just don't want it in cyber world right now.

Giving up on God was by far the worst time in my life. I had no hope or peace and my will to fight was gone, I was done but God wasn't. I don't know why I have to continue to go through all of these things where I must fight but I do know it's not in vain, God has shown me glimpses of himself in the times where I am weak. A tiny glimpse straight from God tends to instantly build you up when you are down and He knows when I need it and provides. Don't give up on God, I promise He is doing something up there on His thrown.

This current trial of life that I am on makes negative sense to me but I know God is guiding me through a very hard time for His glory. In the end, everything will be for the glory of God because He's just cool like that. Some days I just go through the motions of another finger stick, another infusion, more meds, more tests and doctors appointments. It all becomes routine after awhile and you learn to accept that this is your life and you have to put one foot in front of the other. I learned my lesson and instead of running away I turn to the only hope I will ever have and He drags me through another part of His master plan on a daily basis.

Most of the time I just go through the motions but today was different; all of a sudden the weight and reality of my past, present, and unknown future has hit me like a ton of bricks. Realizing that this has no cure and this could be how my life on this earth is going to go, forever. At 23, forever seems so big and overwelming and I catch myself saying that I can't do forever, I just can't. It is true, I can't but God; just like He has shown me before, he will be faithful through it all.

Today has been hard as the reality hit me and I am overwhelmed by what my current and future life with this will be. When I get overwhelmed I crash. I Won't talk to people and basically I camp out in my room by myself to process it all, but the creator of my life gives me another nugget of love and peace everytime to endure whatever comes my way. That doesn't mean my heart is instantly changed. This is hard and feels like an incurable and hopeless situation and I grieve over everything I have lost and realizing my dreams for my life may or may not happen. I have always wanted to be married and have kids and it will take some God networking for me to find someone who would walk this with me because then it becomes his journey and I can't say it is a fun one. I was also just told due to my blood clot that regardless of when but whenever I do become pregnant I will automatically be sent to a high risk doctor.

As I list my dream up there I realize that with God all things are possible and He didn't ditch me and is quite aware of every hope and dream I have but ultimately my entire life is in the hands of Jesus to do as He pleases... { hyu/} ahem Henry says hi.... I feel super clueless as of right now and I struggle enough to get through one day. Even though I don't feel it right now I KNOW God is with me in everything and He will not leave or abandon me so onto the next day I go (get dragged) because I don't want to. It's not always about feelings but about knowing and believing the truths Jesus left for us to stand on.

exercise confusion prayer request

To help re-condition my body to do what it is supposed to I have to do a painfully slow exercise regimen, for months I have been putting bike pedals on the floor and laying on my bed with my feet hanging off and pedaling as well as weight lifting from bed. I had made it all the way to 45 minutes on the bike prior to this stupid blood clot. Despite the fact that I am laying down while exercising it still gives me really bad dizzy spells. I now have a problem because of the blood thinners I am on my hematologist said to stay away from everything that could trigger me to pass out because I could bleed out if I fall.

I will probably have to be on the blood thinners for 6 months-1 year and I know my heart doctor is going to be upset with me for not exercising despite the blood thinners cause that is just how she is; to quote her " you will not get better laying down all the time!"

now don't get me wrong, I love this doctor and she is literally the best in the state at treating POTS and dysautonomia but she will flip if I can't even do bike pedals for a year, I don't know what she wants me to do if I can't even do that but I feel like I am being obstinate and refusing to get better from her perspective.

So confusing, I would love nothing more than to do my bike pedals and go back to the gym (I miss the gym a lot)but it just can't be done right now and for that I feel like I am failing. She doesn't know I am not exercising but when she finds out it will be a guilt trip out of love and the desire for me to get better. She can come across harsh but she is really just trying to help, I just don't handle it well and turn on myself thinking I am failing. There is just as much mental issues as physical that come a long with this disease and it makes the whole thing so much harder.

Please pray for me that I will not be so hard on myself and the doctor will be understanding and work with me on what I can do to fit in some form of exercise that won't be dangerous.