That one moment when you wake up at 3am feeling like death all because you did something the day before. Yeah, that is my life. Right now I am feeling the struggle. I want to live life, not just exist there I mean c'mon I sat on a couch doing a bible study and went to dinner and now I feel horrible and probably will feel that way for a couple of days. This is when the tears come as reality sets in again. This struggle is real, hard and scary. I don't know what God's plan is for me in the long term but for now I am trying to keep it together. It may appear that I am doing so on the outside but in reality I am crushing and having to bring my heart that is in a million pieces to the throne of God because that is all I have left. I am beyond done with being sick and I am fearful of what the rest of my life is going to look like and whether any of my hopes and dreams will ever happen.
It is my reality and it sucks. Every dream and wish I have feels like it's falling apart like a collapsing jenga tower. I know God can do miracles and I pray for that but I also know that He let's us face hard trials to bring us to Him and to others. Frankly, this trial may never end and that terrifies me but I have made it through almost 2 years with this syndrome so I know my God will bring me through whatever I have yet to face regardless of how long and daunting it may be.
I know it is going to take a direct miracle from the Lord for me to get better, I can't put my hope in doctors because they are helpless and hit a brick wall in treating me. It is a wall that God could send crumbling but He doesn't promise that. There is no magical cure for this syndrome; No matter what, outside of a Godly miracle, I will have to face the struggle every single day and it breaks me. Forever people, no end in MY sight. It's like taking the wrong road when you are driving at night and you get lost in the darkness surrounded by corn fields and you wonder if you will ever be able to find your way out. Will there ever be a way out for this syndrome? I don't know but I am certain of one thing, I will never be alone because God is walking with me even though I feel lost, broken, and afraid. Almighty God lets do this, no trial is bigger than You.
God's free hope in the chaos of life's trials
Monday, September 28, 2015
Saturday, September 26, 2015
Life (super long post of me spilling my heart out)
A lot has happened since I blogged before and I refuse to recap so if you want to know something something ask. Anyway, I feel like I am falling apart one body part/organ at a time. I lay here waiting for that next ball to drop and given my life, it will happen eventually.
My health update is well, im alive so that is good. I have spent too much time in the hospital lately and I still feel like crap and they can't do anything for me. It is always great when a doctor tells you they don't know what to f****** do at this point, we have exhausted options. So that is depressing.
Speaking of depressing, I have been struggling with so much anxiety and depression lately. Nobody panic, I am on meds and I have Jesus so nothing is going to occur. obligatory statement for all panickers. Happy now. I am tired and so worn down that sometimes I just feel so lost. I feel like in a blink of an eye everything was taken from me. It is beyond hard knowing it will be 2 years in December when I got sick originally and here I am almost 2 years later still so ill. I hate looking outside because it reminds me of the boating and stuff I used to do in the summer and now it is gone. I miss the gym, the outdoors, working (ok what I did not where I worked) and just feeling like I am a member of society.
Here is a glimpse of my daily life, it' grand:
1. wake up to find out what kind of a day I will have--rarely it's tolerable and I can do things for about 30 minutes without collapsing.
2.lay in bed ALL DAY so I don't pass out (lay if my day is bad)
3. remind myself to eat because I don't really get hungry anymore so I have to remember to eat. The coming up with something is the hardest because I don't WANT anything therefore nothing sounds good. It's a cycle.
4 hook up my IV for half a liter of saline to keep my BP up and pray that I won't pass out or almost pass out, especially if I am in a public location such as the Walgreens checkout lane. That was fun.
5. depending on how I feel I occasionally will get out but I usually feel too sick to do anything besides reside in my cave (room)
6. refresh facebook a billion times thinking that magically it will have a ton of new things. This is where I begin coloring or painting for the rest of my day before it is time for bed.
7. hook up the second bag of IV saline and hook up the process of getting my feeding tube working, the machine is stupid.
8. lay in bed and fall asleep and then wake up 3-4 times throughout the night leaving me a zombie.
I know this is depressing but I am going to be honest no matter what. This routine has been my life for almost 2 years and I cannot even describe how daunting it is that there is no cure and currently nothing else can be done for me so I am stuck like this. I feel like all of my hopes and dreams were taken away, I can hardly walk and as soon as a guy finds out I am sick well, there goes that. I just want to be normal again. Thinking about the future it ends up filling with dreams and hopes that will probably not get to do given my state. My life dream of having a family seems so far away and kind of impossible because people don't like other sick people. It is what it is but it still sucks. God is going to have to perform a miracle if He chooses to in my life because I have so much going against me.
Despite everything against me, I know God has my life in His hands and that conquers all. Amazing. I just need lots of prayers right now as I struggle with this trial God has allowed me to have and pray for healing but most of all pray I will fulfill His will regardless of how hard it will be. POTS and SATAN will NOT win. I am determined to cling to Jesus.
My health update is well, im alive so that is good. I have spent too much time in the hospital lately and I still feel like crap and they can't do anything for me. It is always great when a doctor tells you they don't know what to f****** do at this point, we have exhausted options. So that is depressing.
Speaking of depressing, I have been struggling with so much anxiety and depression lately. Nobody panic, I am on meds and I have Jesus so nothing is going to occur. obligatory statement for all panickers. Happy now. I am tired and so worn down that sometimes I just feel so lost. I feel like in a blink of an eye everything was taken from me. It is beyond hard knowing it will be 2 years in December when I got sick originally and here I am almost 2 years later still so ill. I hate looking outside because it reminds me of the boating and stuff I used to do in the summer and now it is gone. I miss the gym, the outdoors, working (ok what I did not where I worked) and just feeling like I am a member of society.
Here is a glimpse of my daily life, it' grand:
1. wake up to find out what kind of a day I will have--rarely it's tolerable and I can do things for about 30 minutes without collapsing.
2.lay in bed ALL DAY so I don't pass out (lay if my day is bad)
3. remind myself to eat because I don't really get hungry anymore so I have to remember to eat. The coming up with something is the hardest because I don't WANT anything therefore nothing sounds good. It's a cycle.
4 hook up my IV for half a liter of saline to keep my BP up and pray that I won't pass out or almost pass out, especially if I am in a public location such as the Walgreens checkout lane. That was fun.
5. depending on how I feel I occasionally will get out but I usually feel too sick to do anything besides reside in my cave (room)
6. refresh facebook a billion times thinking that magically it will have a ton of new things. This is where I begin coloring or painting for the rest of my day before it is time for bed.
7. hook up the second bag of IV saline and hook up the process of getting my feeding tube working, the machine is stupid.
8. lay in bed and fall asleep and then wake up 3-4 times throughout the night leaving me a zombie.
I know this is depressing but I am going to be honest no matter what. This routine has been my life for almost 2 years and I cannot even describe how daunting it is that there is no cure and currently nothing else can be done for me so I am stuck like this. I feel like all of my hopes and dreams were taken away, I can hardly walk and as soon as a guy finds out I am sick well, there goes that. I just want to be normal again. Thinking about the future it ends up filling with dreams and hopes that will probably not get to do given my state. My life dream of having a family seems so far away and kind of impossible because people don't like other sick people. It is what it is but it still sucks. God is going to have to perform a miracle if He chooses to in my life because I have so much going against me.
Despite everything against me, I know God has my life in His hands and that conquers all. Amazing. I just need lots of prayers right now as I struggle with this trial God has allowed me to have and pray for healing but most of all pray I will fulfill His will regardless of how hard it will be. POTS and SATAN will NOT win. I am determined to cling to Jesus.
Tuesday, September 22, 2015
23
When I think back, I remember dreaming and wondering what my life will be like at 23. I imagined that I would at least be married with kids and just being an adult. Well, as you can see none of that has happened and I am beginning to question if it will ever occur because of this disease with no cure. What man is going to want to take this on?!
I don't know I just have no direction in life right now. IF I EVER go into remission I want to fulfill my dream of being a paramedic. At the moment though everyday is the same fight, the same battle, the same symptoms. This gets depressing I am not going to lie. I want to live life, go boating, be around people, go see extended family, go on vacations exc. and just enjoy this amazing world that God created but I feel so trapped in this body that cannot do anything right and it is destroying my life. Now before I get a butt load of "butt jesus's" yes, He holds my future and my life and I trust Him but we have to do our part.
I don't know I just have no direction in life right now. IF I EVER go into remission I want to fulfill my dream of being a paramedic. At the moment though everyday is the same fight, the same battle, the same symptoms. This gets depressing I am not going to lie. I want to live life, go boating, be around people, go see extended family, go on vacations exc. and just enjoy this amazing world that God created but I feel so trapped in this body that cannot do anything right and it is destroying my life. Now before I get a butt load of "butt jesus's" yes, He holds my future and my life and I trust Him but we have to do our part.
pity party
I'm having a "I don't want to live with this anymore" pity party today. I am just overwhelmed and I can't help but to loose bits of hope as my doctors hit brick walls one at a time. Its hard but these lyrics are making me remember that God has a plan and I just have to hang on for the ride.
My Savior My God
By Aaron Shust
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
I take him at His word and deed
Christ died to save me: this I read
And in my heart I find a need
Of Him to be my Savior
That He would leave His place on high
And for sinful man to die
You count it strange, so once did I
Before I knew my Savior
My Savior Loves, my Savior Lives
My Savior's always there for me
My God; He was, my God; He is
My God; is always gonna be
Yes, living, dying: let me bring
My Strength, my solace from this spring
That He who lives to be my King
Once died to be my Savior
My Savior Loves, my Savior Lives
My Savior's always there for me
My God; He was, my God; He is
My God; is always gonna be
My Savior My God
By Aaron Shust
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
I take him at His word and deed
Christ died to save me: this I read
And in my heart I find a need
Of Him to be my Savior
That He would leave His place on high
And for sinful man to die
You count it strange, so once did I
Before I knew my Savior
My Savior Loves, my Savior Lives
My Savior's always there for me
My God; He was, my God; He is
My God; is always gonna be
Yes, living, dying: let me bring
My Strength, my solace from this spring
That He who lives to be my King
Once died to be my Savior
My Savior Loves, my Savior Lives
My Savior's always there for me
My God; He was, my God; He is
My God; is always gonna be
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