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.

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.

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

Rainbows and promises

so, I am reading this daily devotional book and I noticed something that I didn't realize before, here is the sentence:

Whenever we see a rainbow today, we are reminded that God is faithful and His promises are binding. The reasons for the flood have not gone away, but we can know God will never again punish us like that. --A year with God


I have been wondering how evil the world had to have been at that time for God to wipe everyone out. Then it makes me curious as to how far society today has to fall before God says that He has had enough. I feel like we are a straight path right to evil. Naturally, when I think about the time of the flood, I just assumed that the people were as evil as they can be and we will never see anything more evil in life but the reasons for the flood have not gone away, people are still evil, living in a world with chaos. We could be just as evil as they were.

It makes me amazed that God will put up with us and the evil that we all have. Patience, compassion, and love like no human can fathom. patience in the company of pure evil is almost too hard to comprehend.

hospitals vs. prison war

I think that hospital stays are one of the worst things ever. Besides prison. Although they do have some similarities. Let's compare.

1. Prison: you have a toilet in your cell that is wide open for anyone to view and you have to share with your cell partner. Sounds like bowel movement torture to me. Poor cell mate
Hospital: you must push your call light and wait forever for someone to come and take you to the bathroom that is smaller than a sardine can to the point where your IV pole won't fit thus forcing you to leave the door open and at any moment someone could come into your hospital room.

2. Prison: violent and very loud inmates that yell all day even at night
Hospital: old people have been known to spit on people yell senile things at the top of their lungs so EVERYONE can hear it all night long.

3. Prison: food is hardly edible
Hospital: slightly upgraded food but at least you have choices on what you want

4. Prison: You obviously cannot leave prison and most of the time you are lockup in a cell
Hospital: your hospital room becomes your torture chamber because you can't even get out of bed without a "butt monitor" going off. (I will explain butt monitor soon)

5. Prison: frequent wake up calls all night due to "men" that are out of control and act like 2 year olds
Hospital: you get woken up every few hours for vital signs, inhalers, blood draws (at 2 and 4 am), medications exc.

6.Prison: you have a roommate and you better pray that they don't have a murder conviction and they have to be one of your own people so you don't get shanked or something.
Hospital: sometimes you do have a roommate and sometimes not but you never know what they are going to do or say or YELL. Yell a lot. Such as "aww Lordy forgive me for my sins" ALL THE TIME

7. Prison: you must be aware at all times to ensure you aren't stabbed
Hospital: they can legally stab you with needles all the time

8. Prison: you must shower in a room full of other naked people. Nasty.
Hospital: you have to have a tech in the bathroom watching you shower or in some cases like mine you aren't even allowed to shower at all while in the hospital

**there is more but let's stop now. You got the point**

1. Butt monitor is a feature of the hospital bed that makes an alarm go off if you get out of bed. If you even move in bed it will send it off. On the plus side, you do get to say your butt is going off and that is always a good time.

HEALTH UPDATE

For one, I AM HOME!!!!! 7 days in the hospital is just bleck. I have a feeding tube surgically implanted in my abdomen and I now do tube feedings at night and can eat as tolerated during the day. I no longer have to stress about it which is great. So that's that. I am in pain from my incision but overall I feel a little better with the nutrition in me.

I cherish everyone's prayers and they are not in vain. God is good even when we don't like how a process is going we just have to remind ourselves that the last step of any process is right into God's arms.

tomorrow

Lord wiling I will be able to get some answers and a treatment or a diagnostic plan. I have barely held anything down all weekend and I lost another pound. Please pray that I don't have to do any doctor chasing and that I can get ahold of them right away and get this "plan" I have been waiting all weekend for. Also, please pray that both my PCP and GI doctors take things seriously and don't blow me off. Pray that God would give them wisdom on how to help me because this is getting bad. Pray that my doctor will follow through on everything and doesn't drop the ball.

I am nervous about this, not the treatment but being accepted and believed and not blown off or get passed back and forth between doctors. In all this though I know God is in control and I will cling to this as I face this trial.

hurry up and wait

I am not going to give a lot of details yet but I really need extra prayers right now. Saw my doc yesterday and I am not in a good spot. My blood shows basically that my body has started breaking down itself due to malnourishment and I have lost 5 lb in 2 weeks. He is very concerned and contacted my GI doctor and said I would get a call from him by the end of the day yesterday. Well, I got the phone call and his staff said that "they" (whoever that is. Probably GI) will give me a call but if I don't hear anything by Monday to call his office back.

This whole waiting it out through the weekend is making me a wreck. I need peace to carry me to Monday. (I can almost guarantee I won't hear anything by then)