faith in hard times

Tonight has not been my favorite ever. Just trying to juggle 3 separate conditions and actually live on this earth instead of just a simple existence is hard. No matter what disease you have there are high's and lows like a roller coaster. As I lay here sulking in the fact that I don't want to do this anymore and then realizing I don't have a choice which brings me down to a low point. I am told a lot that I am strong and my faith is encouraging. It might look like that from the outside but in my bubble I am struggling. Struggling to not give up on God and to trust that no matter what happens He will be with me. It's a battle and sometimes I think it sounds like I have so much faith and handle everything that I am going through in a strong Godly manner all the time but I don't. I have moments of defeat and I give up, I have moments where I feel like I cannot take this anymore, I am done. My moments don't always involve God because I push Him away and for some stupid reason I think I can do it myself. {do not try this, I promise it won't work)

Despite what it looks like on the outside, right now I am weak and my faith is dwindling. I have been dealing with this for over a year now and have a very long road ahead of me that I am stalling on because I don't want to wake up tomorrow and deal with my disease. I rarely want to wake up on the following day since without a miracle, I have to fight the battle again and I am tired. I want to throw a temper tantrum and refuse to do it but obviously life doesn't work like that because you would have a pile of adults thrashing and whining on the floor and potential injuries. (go ahead picture it happening, you know you want to)

Regardless of how I feel I know I have to resort back to facts and promises from God despite my broken mental state. Sometimes your heart isn't in the fight and you have to refer to what you KNOW about the character of God and His never ending love instead of the trial that you face. I am running purely off of my knowledge of God to get me through each day which is harder than if my heart was in it as well but that's life and my current battle that I face tonight as I sulk and get cranky over how my entire life has been hard and now we add more stuff, how fun. I know God accepts my knowledge based life right now because my heart doesn't have to be involved in order to love, cherish, and praise Him over facts of His life.

I make less sense as I go, I think my mind is a little scrambled but please pray that I stick with and always remember the facts and promises of God
and pray that my heart will catch up and be all in it as well.

Side note to anyone facing trials, read this book. You will be humbled.

http://www.amazon.com/Hardest-Peace-Expecting-Grace-Midst/dp/0781412153/ref=sr_1_1?s=books&ie=UTF8&qid=1419842369&sr=1-1&keywords=kara+tippetts

sustain

Sometimes it is hard not to just give up and never leave my bed forever. I will be honest, I don't want the next day to come. I'm done with it all, I feel like I know that next day is going to be sucky. My will to fight is a little broken tonight as I know this is not just going to go away instantly {unless miracles occur} and I will probably be dealing with this my whole life. I feel like I am not living but just existing. Every day is a battle and I tend to forget God is walking with me and pushing me through times like these when I just want it to be over. God sustains me through each day no matter what and without that I would not be able to handle all this stuff that is being thrown at me and beating me down. The promise from God says He will rescue me. It is a promise and an unbreakable one. I don't know when He will rescue me but until that day I will be sustained to face tomorrow.

hematology report

This is not going to include everything and it will be fragmented because I feel like crap.

First of all, this doctor is kind, compassionate and knowledgeable and was able to explain a lot to me that I was unaware of so that makes life easier. We basically discussed my different blood thinner options, how the thinners work and the possible complications of them all. FYI: I am staying on the one I have now.

He also doesn't think the clot formed from me laying down all the time he said that since my legs are elevated blood can flow correctly thus no clots. He put me in the category of unexplainable blood clots which are tricky because once you stop the blood thinners the clots seem to come back a lot. So, he is going to keep a close eye on me due to that.

He chose to go with the original 6 month regimen but said it could be bumped up to a year depending on my POTS symptoms at the time. After that 6 month period he said we have some hard decisions to make as far as what to do at that point. Can't wait.

Apparently cancer causes blood clots a lot so he said breast cancer is the only one he would be concerned about given my age but he found nothing on an exam and I have to keep a close watch for that. He said a massive NO to stents because he said that they can actually create clots and well so not the point of it.

He was able to see the signs of my automatic nervous system failure pretty quickly as we talked my pupils did not move and my mouth was dry. After a closer look my eyes are being hit hard by this disease so visual issues could eventually be a problem but not yet.

I basically got a lot of helpful information that I needed to know so even though he didn't treat me for anything, he did give me what I needed to watch for and do to help myself so that counts in my book! I go back in 3 months and see how everything is going but overall I am very pleased with how the appointment went and the doctor is amazing so the journey continues...........

Doctors! It never ends.

I go to see a hematologist/oncologist at 2:45 tomorrow to decide what to do in the long term with my blood clots. The current ones should be almost dissolved by the lovenox injections and blood thinner at this point. I will continue with blood thinners and all that great stuff for 6 months but after that I am at high risk for developing more due to my forced sedentary condition. Bloods clots are life threatening so that is the last thing I need. They might decide to put stents in to block any clot formation from breaking off and traveling to my lungs and causing a pulmonary embolism which is extremely life threatening and it has to be caught and treated VERY fast or well bad things.

On a side note: these last 4ish days have been difficult due to my heart and faulty nervous system deciding that now is when to go crazy. I can't stand and walk at all without my heart rate being 130-145 and its causing chest pains and making breathing a challenge. Even laying in bed I can hear it pumping too fast to count. I have -10 energy from my heart and body having to use it all to keep my body functioning. Sorta functioning. My home health nurse is coming out tomorrow to change my port needle and test how thin or thick my blood is and I ask that you pray for me that I don't have to go to the hospital and I can just stay home and not move for the holidays. She is required to call the doctor if it is that high and the doctor would put me in the hospital, I am doing everything I can to avoid a hospital stay so please pray with me that I can spend the holidays at home with my family. I have spent enough time in that hospital I should have my own room by now!

Tough ramblings

Tonight has sucked and all I can think about is how much I lost through this journey. I feel like I lost everything, our rental house, my job, my ability to walk, no more baths or showers due to standing in heat and it makes you pass out, the ability to go to the gym, and the only place my body is comfortable in is my bed which leads to isolation. So all of that is racing through my mind right now.

I just want this to be done. it's been a year and a whole lot of healing hasn't happened. I have a syndrome that will never go away and I am so overwhelmed by that alone. I know there are treatments in the sense that they treat the repercussions of my faulty nervous system but the nerves system itself cannot be changed. I will never be able to get my life back. ever. but my life will go on without the past and it will just look different. I have no clue what I will be able to do when the job word is mentioned. My doctors don't even say it so yeah this will never be done. NEVER BE DONE.

I believe that veryyyy slowly it will get a little better but it will never be gone. Thinking about my future is like thinking about holes. One giant hole of unknown and not even knowing if it can or will happen for me to get a job and resume normal daily life things. I know in my brain god is good and all for me and would never hinder me himself so I know He has a plan of some sort, it is just hard to trust Him and the plan.

I'm trying to live minute by minute right now and obviously as shown above its not happening.

Jesus

I came across this quote from someone last night on a fb forum on chronic illness and I am still shocked and saddened by the lack of love, compassion, hope, and peace this lady lacks and the brutality of her words.

"If your health is so poor and you are barely able to function, how can you expect to have a relationship? Relationships really need 2 people functioning !!!"

You can have a relationship just like any other if Jesus is in the middle. To say something so harsh as you can't and never will find a soul mate based on a physical illness is oh so wrong. I've seen it happen and it can even strengthen the bond between two people as they rely on each other to face every struggle and trial that gets inserted into life. Do I know this for myself? no but I can't count the number of times I have heard and seen this love of Christ transforming hearts and forming love.

There are so many marriages where only one spouse is functioning; whether it is due to physical illness, mental disorders, or any other struggle. There marriage doesn't instantly fall apart due to a tilt in the responsibilities of one or the other person. They trust Jesus and keep on going with the knowledge that God is in control and He will provide what is needed to persevere through these times of life.

Dear quote lady,

The answer to it all is the love of Christ that is more powerful than we even know.

Honesty

ummm first of all, things are dumb and don't notify me when someone comments like it used too, So, sorry about that I am not ignoring anybody.

moving on, when you are faced with a life long disease and the complications that go with it, it's one of the most defeating and soul crushing realizations. It immediately puts you to your knees in search for peace, hope and comfort. God comes and rescues you. That does not mean your circumstances have changed, they may or may not according to God's will but if you seek Him you will find Him and the peace, joy, comfort and stability will follow. It might take a little while because I believe that it requires you to open your heart and mind and let Him in before He is going to answer your prayers. Your affliction may not go away but we have a God who is stronger than any of our problems even when we forget He is in control.


As a Christian I think we tend to act like everything is peachy and because we have God our life is a basket of (apples?)and our struggles are hidden from others for various reasons. We all want to present being happy, Godly people so others won't get into our box of secret problems that we cling to. Your happy baskets are fake people, we all struggle and have very hard times and don't share it with anyone in the body of Christ because we don't want our secrets exposed. Give that up. We could all build unity if we shared struggles because everyone has them. I could sit here and type about how
my life is perfect because I have God but I won't. It would be fake and in order for people to help you and guide you into Jesus's arms you have to be honest. LIFE IS HARD.

Start opening up with those around you about the trials of life and I think you will find some great encouragement and be led toward God. Fake gets you nowhere but depressed. So, in typing about trials and honesty, I have had a rough time lately focusing on the negative and not searching for the good things God is doing because of my trial. I feel like I am just waiting for the next ball to drop at all times and I certainly am struggling with peace and comfort. I have lost almost everything for the time being; my ability to drive and to just live and not just exist and it is hard. It is hard to know what you will face when you wake up the next day and begin to pray that you could just sleep through your trial. (FYI: that prayer never works. God has plans and there is no time for sleeping it away)

This sounds weird but I want to hear other peoples trials whether they are basic or big it still counts as a trial and it is nice to know I am not alone so please share. Life is not perfect. Live like it. Live like you have your trials BUT are blessed by God to share them with Him or maybe even heal you, you never know with God He does some crazy awesome things sometimes.

In conclusion, please pray for my mental and physical health because at the moment I just feel like a mess and pray that we can all put aside "God makes my life perfect" land and share with each other what we are facing. There is power in numbers and power in Jesus that we have only ever seen glimpses of.

Songs

I am one of those people that God uses music to reach. Almost everyday I have Christian music playing in order to put my mind and keep it focused on Him instead of my trials. I now have started reading song lyrics. No music. Just Lyrics. I have found that it hits your soul in an entirely different way. you don't just get a tune stuck in your head but you read, absorb, and process the words that are said. It hits home and has shown me how amazing God really is. When you read it and it is truth, you feel connected to God in a different way. (Yes, all of you smarty pants this does not apply to every song but a large amount of Christian music)


Here is the lyrics of the words I just read that hit me like no other:


Theres a peace Ive come to know
Though my heart and flesh may fail
Theres an anchor for my soul
I can say, it is well

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagle's wings
Before my God, fall on my knees
And rise, I will rise

Theres a day thats drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagle's wings
Before my God, fall on my knees
And rise, I will rise

And I hear the voice of many angels sing
Worthy is the Lamb
And I hear the cry of every longing heart
Worthy is the Lamb

And I hear the voice of many angels sing
Worthy is the Lamb
And I hear the cry of every longing heart
Worthy is the Lamb
(You are worthy, You are worthy)
Worthy is the Lamb

I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagle's wings
Before my God, fall on my knees
And rise, I will rise, I will rise

PONDER PEOPLE PONDER. THIS WILL HAPPEN, IT IS NOT A FAIRYTALE; IT'S A GODTALE.

You are mine

Isaiah 43:1-2New International Version (NIV)


But now, this is what the Lord says—
he who created you, Jacob,
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze


I am having a difficult evening and then I came across this. Reading that God says I am His is blowing my mind. Then He continues with a list of promises. God is the only one that will always keep promises no matter what and as I sit here is awe of these promises I realize These are not tiny ones that could be forgotten but direct 100% without fail promises. God amazes me a lot. God summoned me by name and I am His The gravity of what that means is amazing.

Night time

Bed time is the worst part of my everyday life. It is a time where there is nothing to do but think; I am left processing how much I have been through as the fear creeps in, I realize that I am back in that valley with no end in sight again. It is a sobering thing to really realize you truly have no control over your body. It is not a control that we have ever had in the first place but we convince ourselves that we got this. Laying awake and thinking about how worn down I am and contemplating what my future looks like is a nightly thing for me.

In these vulnerable moments Satan comes in and makes me think things like: What if this antibody test comes back negative? Is that where the doctors give up and tell me it is all in my head?! Is there even another diagnosis I could have? I know I don't have the option of being cured except through the grace of God but is there any kind of treatment I can do? Am I going to have to exist on this earth living in a partially vegetative state forever? .....list goes on.

I have a fear that if this test comes back negative then my doctor will just say he doesn't know and give up on me like the countless doctors did before him saying all of it is in my mind. That is one of the most crushing blows to someone who is suffering and the only way to pick yourself up and walk forward is through God because I definitely will crumble if I hear that. Good thing God heals emotional pain and physical pain because that is a giant pill to swallow. I just have a lot on my mind right now with so many unknowns and mysteries it is hard to see beyond that. I try so hard not to think about my future because that is just too much. One day at a time, right here, right now I know God is pulling me through this and for that presence I am blessed. My "feeling like I have to prove everything" for anyone to believe me is a dark and lonely spot that only God can wash away.

I am waiting on all of my tests to come back and trying not to get anything stuck in my head as far as the results go. Sadly, I would like for it to be positive so I can start fighting in the correct way but I know life doesn't work how I want it to so I am mentally preparing myself for the negative test and then the "what to do now" conversation with my doctor. I should know the verdict by the 26th of the month. Please pray for my "feeling like I have to prove everything" attitude because it is exhausting. Pray for peace and comfort while I wait for the verdict and then the possible treatments that go along with it. Honestly, I am scared that nothing will be found and being beaten all the way back down to where I started. I would say my biggest prayer request is for peace and comfort as I put one foot in front of the other, remembering that God is still in control of my life.

Field Trips and realities

sometimes I forget that I'm sick. My dad took me on a field trip on Saturday (Some people are crazy and willing to take me in public even with my declining social skills.) we went to pere Marquette and stopped at a lookout, we get out of the car and went to walk and then my dad and I just look at each other and he was like oh you can't do the stairs can you? nope. So he went and took a few pics and then we spent the rest of the time driving through the park to look at the beautiful leaves. It was amazing to be out in God's creation vs. my bed! Yes, it makes me crash later but sometimes you have to choose to get out and do things even though a crash will follow. It is good for the soul.

I still just can't wrap my head around the fact that my life has changed this much and just walking up stairs leaves me ready to collapse. It was such a sudden change that I don't think I really absorbed it. Now I get frequent disappointing reality checks such as the one above. Prior to my seizure I did not even know that conditions of the nervous system exist in the first place and the toll they take on every part of your body; Everything is affected. It is a brutal and unpredictable disorder that there is no cure for. Treatments? yes but no cure. God is all powerful, I will never say there is no hope for POTS and an unknown diagnosis because there is always hope in Him. Without Him I don't know how people get through this. The peace and comfort that Jesus gives keeps me going. If I didn't have that my life would seem pointless and my sufferings would be for nothing.


Job 11:18
You will be secure, because there is hope; you will look about you and take your rest in safety.

Job 36:15
But those who suffer he delivers in their suffering; he speaks to them in their affliction.

Jeremiah 15:15
Lord, you understand; remember me and care for me. Avenge me on my persecutors. You are long-suffering—do not take me away; think of how I suffer reproach for your sake

Psalm 4:8
In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety

Psalm 62:5
Yes, my soul, find rest in God; my hope comes from him.

Without all these promises and the best kind of support from Jesus. I would be very lost and hopeless. Hopeless is such a strong emotion to feel and it slowly eats at your heart and changes the person you were meant to be. In God there is an infinite amount of hope. More than you would ever imagine you just have to seek it.

faithful

I have never been good in things that have a waiting time.I have been very nervous and anxious and everything under the sun when I saw the POTS as the result of the tilt table. My heart had dropped thinking here we go again, he is going to tell me it is only that and my blood pressure drops just come along with it and we can't do anything about it. Obviously, I have been told a lot in my life that things are all in my head and I was terrified that was happening again. God never gives up on us and wants us to hand over this "control" that we think we have. I like control. God reminded me to just trust despite what you think is going to happen and the following message took my worry away and reminded me how important it is to give things over to God. This is the response from my doctor that I have been waiting for and freaking out over:

'We have not yet ruled out AAG. Lets see what the antibody shows.
It cannot just be POTS with low BP, despite the tilt results."

Basically, I do have POTS but I have something else as well that is making my BP drop. That is what we are testing for. So, yes I have 2 syndromes because just having one is not allowed. God gave me this peace despite my previous lack of trust and for that I am so thankful.

Confusion

Apparently my neurologist is out of the office till Monday but he still answers emails. I asked for my tilt table results and his response has me all kinds of confused and discouraged. "tilt confirms POTS" ummmmm I have like 5 papers from you that say it cant be due to my blood pressures. Like this: "I can not make a diagnosis of POTS in the setting of OH" (low bp) and this "The original Tilt test showed hypotension and tachycardia, not clearly POTS".......I sent him an email about all this and probably won't hear till tomorrow. This left me feeling so worn and defeated.

There is a possibility that he is not engaged in what he is doing and wasn't looking at my chart because he is out of the office. he doesn't have to be so focused. Please pray for me for peace until I hear back because as of now it is going to be a tough night. Pray for the right answer whatever that may be and acceptance on my part.

God's funny

God is trying to teach me to be patient and rely on Him; knowing He is in control. I have been waiting for my package from Athena and I got a call today saying that they will schedule me for next week in the hopes that the package arrives. I got so frustrated because this is for the antibody test and that's the most important thing. In my discouragement God is amazing and the package arrived right after all this and I got squeezed in for tomorrow instead. They draw blood at home and then we ship it and it takes from 3-5 weeks to get the answers.

reality checks when you don't want them

Last week and verging into this week all of my symptoms have hit full force. I try to just go about my day and go with the motions but today I was given a reality check that I don't want to hear. I was at my pulmonologist today and we were discussing my quality of life (really bad)and disability things. He said that there is almost no way they can deny it because "there is not a job in the world where you can just keep passing out" It's true and I am grateful for disability but it also hit home hearing I won't be back at work for a long time, if ever, because even with treatment they only expect you to function at 50%.

He asked me if I am driving I said no and then he asks if I am still living at home and when I answered both questions it was like someone hit me with a brick. The look on his face was a look of sadness that I am having to go backwards in life. He then just said "oh man but maybe if you could get disability you could live on your own" It got quiet for a second and he proceeded to realize that I wont be able to live alone because I could pass out and injure myself. He is a great doctor and seeing his facial expressions for my life circumstances made me realize how different my entire life will be from this point on.

My illness is not curable and I will be struggling with it my entire life. So hard to face and comprehend, I don't know what God's plan is in all of this but I know He has one. I am just feeling defeated and tired of living the way I have to live. I don't know why God allowed me to have this trial that won't end until Jesus does a miracle or I am in heaven. I don't have a single clue what my future will look like, I just pray it changes because having to live the way I am now isn't living it is more like existing. I need strength right now because honestly I feel defeated, lost, and worn down. I just want to know if this will ever end here on this earth.

Having a chronic illness brings you down to some dark places that linger for awhile and we need the strength only God can provide to keep on going even when our hearts are heavy and our mind is done.

Athena

Today I have felt so sick and haven't really moved all day mostly do to my blood pressures so I am anxious to keep moving so I share this request with you:
Please pray that my blood work kit is delivered tomorrow. It is the all important antibody test kit. There is a lab called Athena that sends someone to your house to draw the blood and then you are responsible for packing and shipping it to the lab itself. (super weird process, I know)blood can't be drawn without the kit so pray it comes soon. I should have the results of my neurological tilt table on Tuesday.

strength

Legit vulnerable moment: Today has been defeating and particularly hard. honestly, I am broken down and the daily struggle of getting out of bed seems out of reach some days.

I get the "you are so strong" comment a lot but I am so far from it but God is strong. There are a lot of raw moments where I sit in tears because of what my life has become and what is yet to come (the unknown). Today has been hard; filled with muscle spasms at 4am, constant nausea that NEVER leaves, heart racing,and every time I stand up I can feel the blood just draining from my brain.

My cheerful attitude that I try so hard to portray is taking a beating. The waiting on test results and possible treatments is eating at my heart and mind and leaves me in a state that most of my life has been composed of, waiting. Sometimes you have to be vulnerable so people know what to pray for.

From the outside it may look like I have it together but I don't. Yes, I still love Jesus through this and He is the only one pulling me through but I would be lying if I said I am spending time with God even though I have infinite amounts of time to do so. I would be lying to say things between God and I are good. That does not mean He isn't there He is just waiting for me to fully rely on Him and I am not there yet due to sin.

There is a lot going on with my health right now...two doctors debating on what my diagnosis actually is and tests to come of course. So that's cool. Sometimes you have to be vulnerable so people know what to pray for and to break the whole Christian pleasantries of "life is great all the time" because...Jesus. It's not always great, we all have our struggles. Today has been especially rough. I woke up at 4:00 am with severe muscle spasms and bouts of nausea. I was basically walking like a nauseated penguin which I can only imagine how attractive that was.(remind me to youtube that and see if it has occurred) I was able to get a couple more hours of sleep before waking up with so much nausea and I have had to have escorts just to go the bathroom due to weakness and the threat of passing out since this brain blood loss is causing chaos.

Yes, I have my savior by my side but life can still be hard. I opened up some of my deepest thoughts and allowed myself to be vulnerable to you all instead of hiding my "bad/hard" thoughts to just fester because you never know what you say can impact others and I have been blessed to read other blogs that sound bad but are also a reminder and an encouragement.

waitingggg foreverrrr

I am feeling completely defeated right now, like I have nothing left to fight mentally. My emotional self is just shutting down into one huge confusing rollercoaster. There are always ups and downs but now there is different paths that showed up. After being treated for POTS for 7 months with all of the top treatments including 1 liter IV saline a DAY, medications, and using the Levine program to condition my heart, I did not get better like I should. Yes, my heart rate does not go as crazy anymore and my shortness of breathe is a little better but I have a buttload of symptoms that didn't react to the treatment at all.

After seeing this new neurologist on Tuesday I might have some other answers. Not the kind of answers anyone wants but you have to do what you have to do. He said that I don't have POTS because if I did my BP wouldn't be constantly low and have such severe drops. POTS BP issues aren't quite like that.
I also have a fixed and dilated left pupil, nausea, vomiting, involuntary movements, don't sweat anymore, brain fog, body pain, and dry mouth and eyes. There is more but I refuse to type it :)


The diagnosis I received(if the tests come back positive) is autoimmune autonomic ganglionapathy. Say that 5 times fast, really I would be impressed if you could say it once. Anyways, it's an immune disorder where my body is attacking itself. It is the reason for my eye issues (it is beginning to attack my brain fibers) and the reason for my tachycardia by attacking my heart and as it spreads and more and more of the antibody builds up the worse things get and then more organs become affected.

The treatment for this is immune suppressants, plasma exchange (looks kind of like dialysis), other meds and absolutely worse case scenario would be chemotherapy. This illness has NOT been confirmed yet. I have tests to do that could show something totally different so I am not set on this, we just don't know right now. (story of my life)

This is my current, scary, situation. To quote my doctor "The story of acute onset tachycardia and orthostatic hypotension (low BP) associated with seizure following respiratory illness, and recent 20 pound weight loss as the result of an intense physical conditioning program is suggestive of a primary autonomic disorder. I can not make a diagnosis of POTS in the setting of OH (low BP). The pupillary delay is highly suggestive of autoimmune autonomic ganglionopathy.

IF AAG is found by antibody testing, consider cellcept and prednisone, Plex vs IVIG.

POTS vs. NOT

I have been told that I do not have POTS but something else that is in testing and here is why:

1. some doctors disagree and go back and forth about it but I was told that my major BP drops mean that I do not have POTS because all that diagnosis is and means is in different positions I get tachycardia. I do have that but I also have a dilated and fixed pupil, major orthostatic hypotension (low BP), nausea and vomiting, migraines, and abdominal pain. Even on every possible treatment regimen for POTS for 8 MONTHS the only thing that got better was my heart rate. I did and am doing the Levine program and I attribute it to the success of getting my heart rate controlled but that is all it did. If I had POTS months of getting a liter of fluid every day, being on ALL possible meds for POTS, and doing the conditioning process should have done more than just getting my pulse controlled, I should be feeling better to some degree.

2. I am not saying I have AAG because I don't know what I have but the reality is that it is time to start looking for something other than POTS. Not just an underlining cause but something new altogether. My symptoms just don't fit in the little POTS box or I would be much better.

3.I know people are trying to help but I don't want your opinions on what it is or is not since nobody is a doctor. I don't mind advice within limits and I definitely don't mind prayers but I don't want a people provided "answer for everything" At this point I would be thrilled if it was "just POTS" and I could continue doing what I am doing and get better, that'd be great but after 8 months, I don't think it is going to happen. Everybody has a solution for me in their head and if I just "do this" it will all be peachy. My life has never been normal and I go against the normal in every way possible so it is not a simple situation.

4. All I want is your prayers for the correct diagnosis and treatment plan that can make my quality of life improve. I appreciate everyone's support and love as I deal with whatever God does in my life and try to move forward and prayerfully in the right direction.

blessings

It occurred to me that I usually post on fb or this blog when bad news is discovered and I do a LOT of complaining about my circumstances. Giving off a negative vibe with everything is not my intention. My life isn't all bad things and I have much to be thankful for so for you list lovers I am making one of the good things I have in life that I tend to take for granted.

1. I am blessed to have so much family support to get me through this one day at a time. I would be very lost without them.

2 I am thankful that I never went off of my parents health insurance and had to switch to my ex-employers. There is no way I could afford all of my health issues on my own and to add another blessing, my parents pay my medical bills for me and are not expecting any of it back. Not many people have this option.

3.I am thankful that my dad was blessed with a good job so I was able to take out parental loans to pay my bills when I lived on my own. No credit score crashes or interest to be paid.

4. Grateful that my mom is doing better than she was a couple years ago and has been able to drive me to appointments and help me when I need it.

5. blessed to have so much support from my church whether it is just through pray or the willingness to drive me all over that place for appointments when I need it.

6. exc.... oh and Jesus. I am blessed by Him too. exc...

In talking to a friend the other day I was reminded of how lucky I am to have all of these things while I am sick. Most don't have the option and have to work while trying to stay alive at the same time because bills need paid.

past memories/major verbal spewing of my thoughts

My current situation is bringing back a lot of my memories from the 2 years I spent on and off at Children's hospital. Some are good memories like American idol sock version or the time when everyone in youth group attached hand cut outs through yarn so I could hang it up around me and be surrounded by everyone or me being a stop for fast food frenzy and having like 3 shakes as a result. Chatham youth group was such a blessing, making me feel included all the time. It was a very special group of people that brought joy even on the bad days. As everyone graduates college and gets jobs a lot is changing and has been for awhile. I was always reminded that friends will come and go the older you get; friendship becomes harder to maintain as people drift in and out.

Memories of how things used to be become special. I had a lot of bad times as well and the struggle for treatments has always existed in my life. God obviously has a plan for my life given I was a little over a pound at birth and I have come really close to death on multiple occasions but He is choosing to keep me around for a purpose. Granted, I really don't understand why I am having to face these health issues right now and I was naïve to think it was all said and done back in 2010. Note to self: don't assume cause you are only walking the road but God is placing it. I don't know why I have to take this fork in the road but I am comforted to know God has my life in His hands even when I don't feel like it.

Currently some past bad memories are haunting me and trying to discourage me and I have to be honest, right now they are succeeding. It is so hard to be in this place again and no end in my direct vision. I don't want to face this again and have to give up years of life in the fight again. My mind falls to what I "should" be doing right now such as working, dating, and just having fun and enjoying my 20's with work on the side. I can't even explain how I feel right now about this whole situation. I know God has it but I sure don't feel like it right now. I'm worn and confused but God never said it would be easy and trials build trust so you would think I should be the most God-trusting person but it doesn't work like that. It's a battle. A hard battle but if nothing else I have heaven to look forward to when this life is over and I will finally be healthy.

bittersweet

I got a good report from my heart doctor for the first time since I got sick. My heart is currently in stable condition. I was beginning to wonder if I would ever improve and God did one of His famous "trust me" moments that I am so thankful for.

While I am beyond thankful for my heart being stable; I also find it a little bittersweet because that means that all of my current debilitating symptoms are from my failing nervous system. The issue with my heart could be improved with hard work but my autonomic nervous system has no treatment besides hydration therapy which obviously isn't enough. I am going to see a neurologist who specializes in this disorder on the 30th and I shall see if he has any suggestions but in general you can't fix your automatic nerves system to do things when and how it should. Rebel.

So, all of the facial burning, muscle spasms, body shocks, cold sweats, nausea, low blood pressure, exc. Is not going to improve very easily, if at all unless a miracle occurs. God does do miracles still so I am praying for that but trying to face the reality of it not being treatable. I'm hopeful that there is something out there that treats it and I am just not aware of it. For now, I am laying here trying to be thankful instead of upset about what isn't improving and focus on what God did for me today. It is a big deal to finally get to this point after so many months. God is good. All the time.

faith in fads

When you have a life changing illness without a cure most people grasp anything and everything in a desperate hope for a cure. There are situations where doing so is important (cancer) but not always. If you constantly search and "try" every little thing you tend to find that none of them work. Putting faith in the next "possible" healing treatment instead of God leaves you in a fragile state. God allows us to go through these illnesses for a purpose therefore, it is in his will to heal or not to heal and all we can do is accept and trust Him knowing He is our savior, healer, and redeemer. Seeking off the wall treatments and 100% believing they will cure and putting your faith in it leaves out the only thing that really can cure, God. I get asked a lot have you tried this? or this? or what about this? and currently I am doing the standard treatment for what I have and I don't put my faith in juicing and weird blended foods made into a ratchet shake and expect it will be the cure that I am want. Do I believe some of these things will help yes, of course but heal no. God does use things to heal us and could use juicing as a way of healing you since He can do what He wants and all but the faith has to come from God not the juicing concoctions or other things. I think God allows these trials to test our faith and to show us only He can do miracles. When we start trusting the next healing fad, we loose sight of God and His perfect timing. His perfect power to heal or just say wait and watch how He uses your suffering. once again I'm not saying the fads are bad and don't help because I have seen them work I am saying that along with them your faith in God has to be number one or the fads won't work because your focus is on the things of this world and not accepting what God has for you and what He will do through your trial.

nerves

I am one of those super weirdo people that does not care about having surgeries,needle stabbings,and ports exc. but this whole cardiac cath business on Monday has me nervous. For one thing, wires will be put in my heart. Wires and hearts do not go well together. Due to my autonomic dysfunction, when I have procedures it goes into super psycho mode and tries to do everything at once which includes involuntary movements and it makes me shaky and a whole pile of other things. It is not the procedure itself that I am necessarily concerned by it's how my nervous system could respond. Please pray with me on Monday and I know they have light sedatives in the office but are reluctant to use them. Pray that they will agree to it because a small amount is all it takes to relax the nervous system so my brain stops misfiring. So, yeah pray for me because I am not usually nervous but for this I am I don't want to end up having an involuntary leg movement during the procedure. Just something about it is makes me nervous

Thankful

I am learning to be thankful in every situation of life. Sometimes, God smacks you and gives you a huge reality check, or just smacks you cause He is God. I mean I would; there is a reason why I am not God. Anyways, I have a lot going on right now with my uncooperative body but in each little thing there is still happiness and joy to be found if you really look, yes, it might require some digging but it is always there and I am slowly learning to find it. Here is some things I am learning: 1. I lost my job and can't physically work anymore but I am getting long term disability which I can have for 24 months! 2. My parents kept me on there health insurance so I am not swimming in the ocean of medical debt. 3. yes, I did have to move back to my parent's but I am no longer using up all of my savings to live month to month anymore. 4. I have been blessed to have parents who can give me money loans with no interest instead of having to take them out. 5. I have two heart conditions but I am so lucky to be correctly diagnosed in a timely fashion and didn't have to wait years. 6. cardiac rehab and meds have helped a ton as far as the heart conditions go. Thanks, God. 7. with my new med I only puke twice a day...the little things. 8. my port is malfunctioning but I can still do my fluids through it; it just doesn't give up blood like it should 9. my automatic nervous system hasn't completely failed, yet. Just lots of misfires. 10. I am not in the hospital right now! I have procedures coming up but no admissions. Life can be hard but I am so thankful to have God, friends, and family and I will get through this just like I've made it through everything else. The grace of God.

pity party

I am letting myself have a pity party today. I have only left my bed a few times. I am weak and don't have it together at all. Somedays are just like that. I am worn down physically, mentally, and spiritually. I am being blunt about it because people don't share there true feelings much. They keep them hidden. I have no problem saying I am struggling through life right now. It is just hard to keep going after months and months of vomiting and dealing with 2 heart conditions and a failing nervous system. I don't always have it together and I get the "your so strong" phrase said to me a lot. Well, guess what I am not. I let myself have a self pity day because I couldn't handle trying to be cheerful anymore. I have had enough of my illnesses and the doctors and the medications. So, for those of you that tell me I am strong and I handle things so well, let me just say I don't. Life is so hard BUT I will say that God is watching over me in my best of times and my worst of times and for that I am thankful, it gives me reason to live and press on even when I want to curl up n a ball and be woken up when I am healed. Life doesn't work like that. This isn't my most cheerful post but it is how I feel right now.

Prayer requests

I have a couple specific things going on that I could really use prayer for going on. The first one is that my home cardiac rehab is ending after this week because the insurance companies will only allow for so many sessions. Some insurances separate in home therapy and outpatient therapy so that you get more sessions. Please pray that my rehab will be able to be continued even if it is outpatient. If it is not covered they are going to have me doing it myself based off what I have learned to do. The problem is I don't know when to push my body and when not to push it so the idea of me being left to fend for myself is a little intimidating. Secondly, as many of you know my body does not like to keep food in itself these days but I was blessed with 2 days of no vomiting and then today it has taken a new turn and I will spare you too many details but basically I was puking pure bile all morning. It is like nothing I have ever seen and I am waiting for my doc to get back to me about this so if you would pray for that to stop I would appreciate it because it is causing other issues like with my throat from the pure acidic-ness and is quite painful.

Another week

Mondays are hard. They is no difference physically but mentally they suck. The longer I have these syndromes the harder they get. It is the start of another week. Another who knows what will happen tomorrow, could I end up passing out or fighting to keep my blood pressure up or being so exhausted I can't move. During the weekends for some reason I can semi-forget the state my life is in but come Monday I realize it all over again and have to fight the battle some more. Face the unpredictable nature that is 2 heart conditions and a faulty nervous system. I just don't know where my life is going and I can only pray that it goes differently than what I am bracing myself for. I don't know when I will be able to drive again, if I will ever be able to work again thus ever leave my parents house and if I will have to have a port for the rest of my life. I don't know and I don't have the "freedom" that people who are healthy have to just decide to do something on a whim. As one week ends and another begins, it is another week of the pure unknown from day to day and sometimes hour to hour that gets to my spirits and brings me to a place where I just have to wait; which has never really been my thing anyway but God knows my future and what my life will look like and I know that all of this is for His glory so big girl pants go on and I try to focus on today, the here and now, the what can I do with today, not a month from now, today. I don't know what the future holds but I sure do know who holds it and I am pretty darn sure He has it all under control..............This song has always brought me encouragement and today it is needed......... https://www.youtube.com/watch?v=juptsGuP3oE

Things faced when you have a chronic

Here is a couple of well said articles on chronic illness that basically sum up my life. Not really cause God exists too but ya know. http://www.psychologytoday.com/blog/turning-straw-gold/201312/six-common-misconceptions-about-the-chronically-ill http://www.psychologytoday.com/blog/turning-straw-gold/201405/3-things-the-chronically-ill-wish-their-loved-ones-knew Sums up a lot of my feelings right there.

Ramblings

I am finding that one of the hardest things about this illness is how unpredictable it is. I could be feeling ok one minute and then the next I get hit with a wave of nausea or some symptom of my nervous system going crazy. I have to live minute to minute and it is not an easy thing. It makes it hard to fully enjoy the moments of fun and escape from my house because in the back of my mind the fact that things could go wrong on varying levels of severity at any moment is always there. The reality of this is I will always have POTS and autonomic dysfunction, I have accepted that but I can't help but wonder if that concern in the back of my mind will ever fade away. I have a lot of things that I am working on accepting whether I like it or not and I can only pray that God will give me peace as I let myself face the reality that these illnesses will always be there. I will say it is encouraging that although it is a painfully slow process I can tell that my cardiac rehab is conditioning my heart to do what it should do on it's own. I don't know how much functionality I will get back and I know there will still be bad days on this journey that is now a part of my life forever. It is daunting and overwhelming to process when I allow myself to think about the rest of my life on earth and the constant battle I will now have to face every day. Today has not been the best of days and it is days like this that I am really aware of how quickly things can change with this illness and I am reminded that this life on earth is not my final home. I have found a new appreciation for the fact that yes, I will have this forever on earth but for eternity I will be healed to live without pain and suffering for the rest of time. What a blessing and a special day that will be when I get to leave the troubles of this world behind, never to return for the rest of eternity. So, for now it is one foot in front of the other and reminding myself that God never let's go.

coping mechanisms

While coping mechanisms can be great things and I believe God has allowed us to be capable of having them and maintaining them with the idea being we really focus on Him. God is after all the Best coping "mechanism" (yes, I know He is not a mechanism but words aren't happening right now.) The way I deal with my life is to try not to even think about "what I am missing out on", "what I should be doing at this point in life", "everything that I can no longer do" and that kind of thing. Live in the hour because the next hour everything can change. Well, that's fine and dandy eventually you cross a line. If you don't allow yourself to "go there" then you don't grieve that loss in a slower, normal fashion and EVERYTHING hits like a freight train when you do let yourself go there for even just one minute. That is where I stand right now and grieving all the losses at once is a lot harder than one at a time; somewhere in this journey I became a genius and pushed everything aside to get through day to day struggles and refused to face the realities of my situation and now it's not so fun. My mind has been overwhelmed with how far in the "wrong" direction I have come in about the last year and it is flooded with things like hmm I wonder if I will ever be able to drive car again or go to a store and not feel like puking and passing out and I think I will just have to live with my parents for the rest of my life so that's cool. Seeing beyond these things is very hard because it has been 8 months now since I got sick and these things haven't changed much and at least for now there is no answers as to when or if all or some of these things will occur again and in what time frame. A year? 2 years? I just don't know but I miss them all right now. Getting in my car and driving somewhere has become hard to even fathom anymore considering if I turn my head too quickly I get dizzy. 8 months later and judging by the fact that if both of my parents go somewhere I require a babysitter since I am not supposed to left alone it just doesn't seem like much is going to occur in a timely fashion and I like timely fashions. A lot. Please pray for acceptance, peace, and patience as I trudge along here one day at a time and I have some big doctor's appointments coming up that need prayer as well. This Monday 8-4-14 at 4:00pm I have an appointment with a GI doctor that works closely with a neurologist at St. Claire that specializes in autonomic dysfunction and the prayer is that they will figure out what my puking issue is and fix it and I would you know prefer that to be without getting diagnosed with anymore diseases or disorders which is a possibility. I see the GI Monday and the Neurologist I can't see until September 30th but hopefully and prayerfully these two very precise specialists will be able to give me some answers on what my body is really doing and some treatment options.

pawn and wait

I am stuck playing this game of musical doctors. Again times 5,000. I went and saw my GI doc today and he really doesn't know what is making me so sick. We are doing an abdominal CT scan on Friday and I have to drink contrast at 7am. Yeah have someone who can't keep anything down drink 24oz of contrast an hr before the test and then drink more right before it. Mmmhmmm this is logical. Please pray that I can drink it and keep it down! This stuff tastes a kind of horrible that can't be explained. if this CT scan is normal it is probably related to my nervous system disorder. The nerve that tells your stomach to move food onwards can malfunction and cause all of my current symptoms. He said it is likely to be the nervous system but he wants to rule everything out and he doesn't really know anything about autonomic dysfunction so I would have to seek treatment somewhere else for that Today has sucked anyway, all I want to do is go to sleep and wake up and be healthy again. I'm tired of going to bed not knowing what symptoms I will have when I wake up. I am so tired of being pawned from one doc to another because you don't get help that way, all I want is someone to help. That's all. So pending a normal CT I will be finding a new Dr. That knows about this condition and making an appointment that will probably be months away since it's such a precise area of study. pawn and wait is my life right now and I am not going to deny it sucks big time. Kind of like hurry up and wait while you get sicker and sicker. At some point in all of my health issues I hit a breaking point, well, today my breaking point has been reached and I have had to really reach out to God to do whatever He is going to do because I broke and gave up my fight. I give up. Fortunately God doesn't and today shall pass and a new one will begin and who knows God might have something up his sleeve and will renew my strength, peace and hope. If nothing else He is still right here walking this path of darkness with me and for that I am thankful.

Cardiac Rehab

I have started doing in home cardiac rehab to re-condition my heart and wow is it a reminder of what this syndrome has done to my body. I am still absorbing the limitations that I am supposed to follow which are not really realistic to life. I am only supposed to walk short distances and was told no more than 30 ft at a time. (yes, 30 ft) That is near impossible so when discussing it with my physical therapists she said if I HAVE TO walk more than 30 ft then I need to sit down everytime I reach that 30 foot mark or if that's not plausible then I must have a CANE with me so I can stop and shift alot of my weight onto the cane. we also discussed my need to leave my house on occasion and my desire to return to church and be around people which would no doubt be more than a 30 ft walk, sometimes by far and I was told that I can do those things like go shopping or go to church but only in a wheelchair and a transport one as well so I wouldn't be the one doing the work to move it, someone would have to push me. If I didn't feel old before I sure do now. I'm approaching 90 with the cane and wheelchair, just wait until I end up with a walker! It might help if I explain a little bit about cardiac rehab because it is so different than most rehabilitation areas. It is judged off of two scales: one being your rate of exertion and the other being your vital signs but the rate of exertion is the primary one used. Everything that we do in our sessions has to be "light and easy", if it becomes a little bit hard it is mandatory to stop because at that point you are doing more damage than good. Each time there is a sitting warm up where I like move my ankles and bend my knees and little things like that as a way of telling my heart ok I am about to get up and do something so you need to actually be pumping then I. Can get up and walk. Sadly, once I reach 30 ft my exertion goes from light and easy to a little bit hard so that is my walking limit for now. After the walk we do a cool down reminding my body hey we are stopping by doing similar little exercises that I did in the warm up. In a normal person all of these things that I must prepare and intentionally tell my body happen instantly and automatically without a second thought but mine no longer does that and through this slow slow slooooow process we are teaching it to do that again. It is all a little overwhelming and the fact that I now require a cane and a wheelchair at 22 is a kind of discouraging but God knew my body would loose it's marbles and I just have to accept that this is just how it is for the time being and obey when I have to use a cane or a wheelchair whether I like it or not.

You are the only one

Lord, let Your kingdom come/ Who can right every wrong/ You are the only One/ Who can calm every storm/ You are the only One/ You alone are Father, Savior, /Spirit, Healer, Redeemer/ Lord of all/ You are the only One/

prayers and praise

People have been asking me for specific things they can pray for so I though I would put it here but first and do have a few praises to share so I will start with that: 1. I don't have congestive heart failure that they said could be a possibility in the hospital. Yay for no transplants!! 2. I am so blessed to have the parents I do that go above and beyond without one complaint. 3. I finally got set up with an in home cardiac rehab lady who knows all about this specific program I am supposed to follow. 4. I have the best friend and roommate ever who is packing my stuff for me since I'm rarely there and tire easily. 5. I was introduced to a fb group for people who have POTS in St.Louis and it is so nice to know you are not alone and to be able to ask questions and get support from others who have it. PRAYERS 1. If I could stop throwing up despite 4 nausea meds it would be great. 2. That my allergic reaction to the tape that holds my port in place will calm down. 3. That I will be able to get in and see my GI Dr in a timely fashion. 4. That I will truly learn to lean on God as this journey drags and wears me down emotionally. 5. NO MORE passing out issues because that just feels awful when it happens. 6. That my migraines will waft there way out of my brain. 7. Lastly,my long QT interval that showed up on my EKG when I was hospitalized will go away because that along with the fast heart rate basically means my heart is racing and then pausing altogether then racing again (and repeat) which could be dangerous. I hope this gives everyone a better idea of what is going on and what you can be praying for.

uhh what?

Sometimes I just find myself praying to God and asking "what are you doing here?". I just don't get it. I don't ask why because well why not but I do struggle with what His plan in all of this is because all I can see is I lost my job and it's unknown if or when I will be able to work again, I'm loosing my rental house and forced back into my parents for an unknown amount of time, I've lost my freedom to drive and really just kind of lost my freedom in general. Ummm God, what are we doing?! I am pretty sure this is going the opposite direction in life and we might just want to flip it around. My little human perspective can't see beyond this and even pondering the future is near impossible because it is really just a black hole to where I can't even take an educated guess. Everything leaves me asking what. What are you doing with my life?! I sure don't know but fortunately we both aren't clueless and You know exactly what you are doing even though it seems wrong to me. Trusting God has always been a struggle and this new trial is no exception, I still don't understand, I still doubt at times, I still get frustrated and try to push God away, nothing in my sinful nature has changed since I have faced all of my past trials but what I have done is learned from the past, now I know Your plan for me is flawless and I can fight it or accept it and accepting it is so much easier. "My heart and flesh may fail The earth below give way But with my eyes, with my eyes I'll see the Lord Lifted high on that day Behold, the Lamb that was slain And I'll know every tear was worth it all"

ok days

Don't get me wrong I am so very grateful for an ok day today but in a way ok days are the hardest. I feel good enough to realize how much my life has changed. I never imagined I would be back in a medical crisis again but God has other plans. I don't understand them but I trust the one who gave me life to begin with. Emotionally, ok days give me a chance to really realize how much I have lost and how I got to this point in life. I'm not going to sugar coat it, it has been a long, hard journey thus far and it is far from over and I just want to be done.I have lost so many years of my life and some of the best years included and I want to be a productive member of society and work again and enjoy my 20's, not spend them going back and forth to and from hospitals. I want to live not just exist. For now, I have to surrender to what I want and let God lead in my life no matter how hard that is because looking back doesn't change anything so forward I go with some nights filled with tears for what my life has become and hope for what God has in store for me and how He will use this time in my life to glorify bring himself glory. One foot in front of the other I go.

heart update

Good news....I'm not in heart failure! I do have another heart issue called long QT interval though. (pfft always something) What that means is my heart is beating crazy fast and then taking a big pause then going crazy again. It is caused by medications usually so they will be adjusting those and some of my electrolyte levels came back low last night so they are giving me those IV. The plan is still to release me today but it probably won't be until later tonight after they have done all of those things and a pulmonary function test.

good times

I knew my body was complaining since Tuesday but I ignored it because with pots you just never know what is too little or too much for your body to handle. It is all a risky guessing game. Each day I felt worse so I took it easier as that is logical and I fully expected my body to go right along with it and calm down and everything would be peachy. Yeah, my body had other plans. Early Saturday morning I started to feel really bad and was so weak any movement would make my heart rate shoot up and my oxygen drop. my oxygen was then consistently in the 80's so my parents and I were in my room debating on what to do and I decided that I have to go downstairs at some point so my dad got me standing up and I was leaning against him as my body went numb and when my legs began to buckle I decided that it is not going to happen and sat back down when all of a sudden I lost my hearing and then passed out. When EMS arrived my Bp was 70/50 and they used a chair with tracks on it to get me down the stairs to the gurney. My Bp has been low on and off and my cardiac enzymes are moderately elevated showing some damage to the heart but I have yet to see my electrophysiologist and find out what her thoughts are. I don't get the feeling that they are too worried about my enzymes but I have heard congestive heart failure thrown around a few times and since I have been having chest pain and vomiting today I don't know what they are thinking. Really, I don't know about any of it. I am completely worn down and trying really hard to stay in good spirits and keep my sense of humor in tact to push through along with a lot of prayers because this is beyond old.

ablate everything?!

My CNS has been loosing it all week thus making me feel like death and I fully admit to my female crankiness that follows that. Walgreens is about to get to really experience that in all it's glory if they can't figure out how to run a business. My mom was like escorting me out yesterday as I was seriously pissed and at one point I might have said something along the lines of wanting to kill people, ya know, the norm. I would never. We didn't wait around to test it though. Probably for the best really. yesterday, I had muscle spasms going on and looked like I had turrets. I was telling my dad it is my nervous system misfiring and we proceeded to discuss cardiac ablations and he asked if you could ablate your nervous system. I feel like that would not go so well. You can't just go around like oh, kidney failure, let's ablate it! Oh stupidity, let's ablate it! (if only) there is no real "treatment" to cure what I have. A cure for POTS and Autonomic Dysfunction would be great but it hasn't been found yet, it is all about managing the symptoms throughout your whole life. Great fun. My current prayer requests are: 1. My appt on Monday with my new neurologist to discuss Botox treatments for migraines 2. My appt on Tuesday with my GI about my nausea. I wake up with it at 4am, 7am, and 9am and then proceed to deal with it the rest of the day.

calm before the storm

My ok day preceded a downhill spiral. I am so much more thankful for that one day since my nervous system has decided it wants to go crazier than it's everyday crazy causing muscle spasms, heat intolerance (oh Missouri), intensified nausea and more! The symptoms of Dysautonomia are compared to that of a traumatic brain injury and a spinal cord injury, sounds fun, right?! So, when I get up to walk sometimes my sense of balance is totally off. I feel like I'm walking like a newborn giraffe in an attempt to get my knees and ankles to lock up a little more. Basically, I am currently a newborn giraffe that has brain damage and a spinal cord injury, if that isn't attractive I don't know what is!!

support....it exists!

I feel so blessed "this time around" to have so much support and visitors. I don't feel like I really had much of it in the past and it makes such a difference to my mental well being. This situation can get kind of depressing at times and very isolating so to have people putting forth effort to ensure that I don't feel like I fell off the face of the earth means so much. I have had enough people ask where I am at now and what the "plan" looks like that I feel the need to put it here. First of all I can't have a plan because my body does what it wants but we wait and see what this new heart medication does and I continue to do PT to try to train my nervous system over approximately 2 years and doing I.V. Fluids through my port daily. That is what we are doing to try to at least improve the POTS and autonomic dysfunction. It is unknown but doubtful it will go dormant since apparently everytime I get sick it goes postal but hopefully the symptoms can be managed better over the next 2 years. Yes, 2 years. It is a non-curable, debilitating syndrome. As far as my migraines go I see my 3rd new neurologist on July 7th who specializes in using Botox injections to treat migraines so that looks like 5 billion kinds of fun. lastly, my food intake is not good and I still have stomach acid in my blood so I go see my GI on July 8th so he can figure out what to do. This battle isn't even close to being over yet but I am not alone. I have God who is all powerful and I have a good support system so forward I go.

epiphany

We are going to pretend like I didn't have to google the word epiphany Mk.mk. Anyways, I had one of those things. While pondering what God's plan is for my life and all these issues that I have had my whole life it suddenly hit me. I now know why. The answer is the same for everyone on this earth, give God glory. How He chooses to do that is up to Him and He has every right to allow life challenges because I don't know but maybe through this others are giving God glory because of my struggle. The more the merrier. He is also not forsaking me through this but "trying" to teach me so 2 birds with one stone! All I'm saying is that everyone is to bring glory to God and sometimes He does it in ways that don't make sense to our closed off little minds.

That point

When dealing with any kind of chronic illness there is always a crucial point where your enthusiasm to fight leaves you and you are just kind of left with this empty shell and you have to decide what to put in it. Some people give up, others work really hard to regain their enthusiasm and some people try to accept the circumstance and put one foot in front of the other. I have now reached the empty shell point. I'm tired of fighting so hard to get shoved to another Dr who can't help me. I'm tired of everything and my will to really take this head on is gone but giving up is not an option so I am choosing to fill my shell with a lot of Jesus and just go through the motions and do what I have to do to get better. Nobody said I have to be thrilled about the process just that I have to do it. Last night I decided to accept my circumstance and trudge ahead after being up every 2 hrs with nausea and muscle spasms from my faulty nervous system. It might have to go one hour at a time but I will get stronger even if it is done by going through the motions and Jesus pushing me the whole time. I knew this point would come because it always does and here at almost 7 months in it hit. Thankfully the God we serve is all powerful and loving enough to suffer with us.

crazy?

There is nothing worse than when a Dr doesn't believe what you are saying about your diagnosis. You go seeking help for pain and leave with no relief and now more emotional scars and doubting everything you have been treated for for months. It leaves you feeling like everything could just be in your head and you are crazy. Knowing von loudly I know this can't be in my head but to hear this doctor say that my electrophysiologist must be wrong about my diagnosis because it isn't presenting itself normally is UN-called for. I don't do anything normal so you have to take that out of the equation. I am so frustrated with everything, sometimes on the journey through life you just want to go to sleep and have it be over with. If this next neurologist is a piece of work I will be running out of options. Please pray for my mental and physical health but mostly mental as this finding a Dr who believes me and I isn't too afraid to take my case.

pain management.....or not

My appointment today ended in frustration, the Dr was skeptical about all of my medical conditions and doesn't feel comfortable putting me to sleep or injecting Botox because the Botox it paralysis a small amount of my nervous system and that could be bad given that I already have nervous system issues. I do have an appointment with a new neurologist on July 7 so keep praying I need everything I can get

pray request for tonight

My emotional state is like a pendulum but for tonight I ask for prayers as the fact that it has been 6 months of dealing with this and it hits me like a ton of bricks at times. I miss my independence and just being able to do simple tasks such as walk up stairs or going to Walgreens without having to take a ton of meds before and crashing when I get home. Even taking a bath or shower has been taken from me and I. Have to have a babysitter if either one of my parents will be gone. I need help at times walking from one room to another and going up stairs I have to stop half way while the blood drains to my feet and I wait for my heart rate to go to about 145 in order to get blood back to my brain enabling me to walk the rest of the way all the while my blood pressure is dropping more and more so by the time I make it to my bed I am lightheaded and can't catch my breath. I walk slower than a snail and I have to sit frequently so my O2 and BP can compensate for whatever my heart is doing. I'm 22 and all of this is so hard. I know God is here and helping me but it is still a tough daily battle that I am struggling with right now. I'm 22 going on 90 and I'm fairly certain that is not how it is "supposed" to go according to me of course but God has other plans. Please pray for mental and physical strength in this battle where I don't know what tomorrow or really 2 hrs from now will bring. Thanks in advance for all my prayer warriors out that.

God whisperer

there has been a lot of moments in this journey I have been a 2 year old and said I don't wanna and dug my heals in for God to deal with. One would think the human race would have learned by now that we won't win but we are idiots. In those moments I am pretty sure God is like no really you don't have a choice and puts a pinch collar on me; now you would think I got the point but no. He then begins to drag me through my storm and everytime I complain I get a chhh, telling me that He holds my life in His hands and have it to me and can do as He pleases but is also suffering me so I am not alone. Chhhh don't let Satan get to you. Chhhh it is not the end of the world. Chhh I am with you. Chhh you are not listening. I feel like I am blessed with a God whisperer at times that guides me back when I become distracted by the trials of this life. One of these days , when He returns to get me I. Will no longer be chhh'ed but hugged and what a great day that will be.

Gods plan

I had a very special visitor see me on Wednesday and while she was looking through my baby book she mentioned that I have always been a fighter. I didn't say anything in the moment because I had to ponder it but it hit me in a good way like a ton of bricks. I entered this fallen world as a 1 lb 8 ounce fragile baby who barely made it through the beginning of life let alone my battles since.

I began to think of my life as a whole and God touched my heart and I could feel His presence as I thought about the fact that He has had to have His angels surround me for my whole life thus far and He has never left because if He did I would not be alive today. I don't know why I have had to and still am going through the trials that I am but I know the God who sustains me has big plans for my life and my story. I don't know what that looks like and I may never know because He might choose to do it in a more suttle way that I can't see but there is one thing I do know for a fact: it is not in vain.
This has given me so much peace and although it still sucks and is hard to make it through each day keeping this knowledge in my mind gives me the drive to keep on going in order to let God use me for His plan without me getting in the way. I love how He uses people to share his thoughts with us. It shows what a mighty and all-powerful God we serve.

PCP and cardiology update

I am very happy with my new primary care Dr, he is very thorough and I will be seeing him every six weeks unless something weird occurs. I said ok I will see you in a few hours! I think he will actually be able to manage my case which is what I have been looking for cause sorry docs I know it has been drilled into your head that if it looks like a zebra then it's a zebra but I don't follow that I'm like a bigfoot. Yes, an unknown species.

I then saw my cardiologist who said that my current heart medication is not working and I need to switch to a new one. She said if I didn't have asthma then I would not be having issues because I could take normal beta blockers but since I have the asthma I have to take a special kind of heart med that doesn't work as well. If I didn't have.....hmmmm that sums up my life pretty well!!! She also gave me my last option for nausea and she said (and I quote) "if that doesn't work I don't know what the f*** to give you" 10-4 doc copy that. She's crazy but a genius and I love her. She is also changing my IV fluids around to help keep my BP up and to help stabilize my heart rate. Please pray with me that this works because I am limited on options compared to most and never do anything the correct way.

I have physical therapy coming to my house to help train my nervous system at home since I am to rest as much as possible. I know God has a plan for my life and all of these medical hiccups play into His master plan which seems really confusing right about now but I am thankful He doesn't leave me even in my moments of doubt and discouragement. I just have to remember his love never fails.

food wars

so, my body has rebelled against food for a few months now and the Dr's solution is to just eat. Now, if I could do that and have it stay down we would not have to be discussing the issue. Derp. Sometimes I just don't understand.
on an unrelated note my dad worked from home so he could "babysit" me today while my mom was gone. Yes, my life has become that pathetic. Anyways, one of our conversations went like this:

me:"I want to go upstairs"
*that usually requires someone behind me so we start to go up and I have to pause half way so I don't pass out*
dad: poking me while we stand in the middle of the stairs.
me: what are you doing to me
him: smiles
me: I don't think enough blood is going to my brain today
dad: " that has always been your excuse!
yes, smarty pants.

I see my new PCP and my cardiologist tomorrow and I will update when I get home.

change of plans and life lessons

So, my body has decided to go backwards giving me fevers of 101 and making me feel really crappy. I am still dealing with a pulse of about 110 while laying down and about 125-165 with O2 drops down to 82%. I mentioned previously that my pulmonologist wanted to have home health come out and do a walking oxygen test with me but that all changed with the fevers. I now must be at DePaul at 9:15am tomorrow morning for a chest x Ray and a walking oxygen test and then an appointment with my pulmonologist. We are praying it didn't morph itself into something super crazy but  it is a possibility.

Sometimes I feel like I can't catch a break but then I realized that Jesus didn't either because He had the weight of knowing He would suffer on the cross for us and his own father would turn on him in that moment and he had to carry that weight while being directly tempted by Satan and enduring a lot of suffering on this earth so why do I deserve to catch a break? I don't and when I get one it is an act of mercy, not a right.

This leads me to some life lessons I'm learning at 22. A lot are hard to accept at my age but I guess God is teaching me early. So here are a few I will share so you can think on them too:
1. Just because you are young; you are not exempt from the struggles of this world
2. God never leaves or gives up on us even if we give up on Him and ourselves
3. ALL suffering has a purpose even if we don't know what it is
4. GOD has NO obligation to reveal the cause of our sufferings to us, it's called faith
5. Life is hard
6.GOD is faithful. Always.
7. We are never alone
8. Suffering is going to make heaven that much sweeter
9. GOD becomes more mysterious as you try to connect things and you stand amazed at how He created us and the pure power He has to do that alone let alone everything else.

struggling

I woke up today not feeling well at all with a temp of 99.8 and feeling very short of breath. My O2 drops to 85% sometimes and my heart rate shoots up to 150 when I walk but returns to semi-normal after I sit awhile. Therefore there is a good chance that the oral antibiotics aren't working considering the last 2 days weren't this bad. My pulmonologist said that as long as when I'm laying down and my oxygen stays above 90% I can wait till tomorrow morning for him to call home health out to do walking tests with me to see if my O2 drops, if it does I will be on home oxygen and if I have a fever I will probably be put on IV antibiotics. So, obviously I am going the wrong direction which is sucky.
on a different note, I have been asked on a number of occasions lately if I ever ask why me. I always have a moment of reflecting with it because until it is brought up it never even crosses my mind. I don't ask why me because I wouldn't want anyone else to have it for one but also it is the hand I've been dealt and we all get dealt a hand and this is it. It is a waste of time to sit and contemplate why me because God is not required to give me an answer and it brings more hurt and wastes time waiting and thinking about something that doesn't really matter anymore.
I will say I am very tired of fighting and have cried out and contemplated why the journey has to be so difficult and how done I am and why nothing can go right and the exhaustion of it but why me? No.


http://www.youtube.com/watch?v=DXDGE_lRI0E&sns

the long waited story

I haven't been on the computer much lately because sadly it takes energy that I don't have. So backtracking we go: every night 2 weeks ago I got low grade fevers that would increase each night. Good times. I attribute everything to my nervous system these days so I figured it was causing it until Sunday night when it hit 102 and I felt more off than normal.
while keeping my pulse ox on while I went to the restroom I was on my way back to bed when the room was spinning I looked down long enough to see my oxygen at 85% and my pulse at 140 before I was out hitting my head on the hardwood floors. I came back to really quickly and knew I didn't have a concussion so I emailed my pulmonologist and he sent me to the ER. They found pneumonia and my Bp was in the 85/64 ranges and my oxygen was dropping so they decided to admit me to a step down unit from ICU. Once there my O2 was still causing issues as well as my heart rate so I was on every monitoring device possible and it was extremely dehydrated as well as a dangerously low potassium and magnesium. I was IV pumped full of 3 different antibiotics, magnesium and potassium as well as a ton of fluid boluses to help control my heart and Bp. I passed out a lot during Pt so that is always fun my vitals would drop out of the blue and with the gait belt they would hold me up until the wheelchair was behind me. They also are trying to get me to eat but it's so hard when the thought of food makes me want to puke, my cardiologist did not want the feeding tube but I have lost another two pounds so idk what the plan is for that. Currently I am at my parents house for safety reasons and really not feeling well from the pneumonia, antibiotics that make me feel sick and my tachycardia in full swing so that's a prayer request. Thanks to all of those who are praying for me, it's a long battle ahead and at times I want to give up but God isn't allowing it so pray for strength because I am beyond done. October until now is draining me mentally more than physically and not knowing what is ahead is scary because I don't want to be in this physical state anymore as it is and I have a long way to go and I'm sooooo tired and scared of the unknown even though I know God has it I struggle to trust him on a deep level vs. Going off of the knowledge of Him to get me through. Not saying knowledge is a bad thing but I want a deeper trust so I don't have to be scared of what's to come but for now I am and God takes me where I'm at so God, I'm done.

Important appts timeline

Most of you know about my appointment on Tuesday that is really important but this next week is filled with other appointments other than that and I could use prayer for all of of them and this will give everyone an idea of when I would know something new:

MON----my biofeedback instructor at 3:30pm
TUE---my very important visit with my electrophysiologist to discuss all my complications 1:00pm
FRI---I will get to see a pain management specialist for my migraines that are daily right now, my mom sees him and I have met him and he is very caring and one of the best. Eventually, I will be getting botox injections all the way around my head to treat them. I don't know how it works exactly but it has helped my mom a lot. It can take a long time to get the insurance to approve the procedure and then order the botox so it could take awhile before I actually get started doing it but I am beyond blessed that when my mom told his staff my story and they told him, he is so compassionate that he is working over to see me on Friday and it is almost unheard of to get in this early. Praise God. Pray with me that all approval will come through in a timely fashion and he can come up with something to help in the meantime.


Also, on June 19th I go to see my new primary care doctor who my pulmonologist recommended. Pray that he will be good with complicated cases and be compassionate and understanding of everything I have been through and do his best to make things easier on me.

The hands that hold the world are holding your heart

First of all, I apologize to everyone for not answering calls or texts. Sometimes, when  another set back happens no matter how big or small I can't take people. I know that everyone cares and wants to know if I am doing ok and hanging in there so I apologize for being rude and not responding to everyone who wants to help. So sorry.

I am going to go on a side direction really quick before continuing with  health crap. In 6 days I will be completely cleared of all driving restrictions thus making it so that I can drive on highways and go to my bazillion doctors appointments on my own. I am crying as I type this because on December 18th 2013 I lost everything. My ability to drive, my job, and all of my freedom; leaving me broke and thankful for parents that help out until our lease is up and I move back home. I lost my freedom of living outside my parents house and now I am headed back home on Aug 23rd; something I never thought or ever wanted to do. I may have lost a LOT but I did get some surprises on the way and this on is a shout out to my mom. We might not have the closest relationship but she has made huge changes and has been able to drive me all over the place and I am so thankful that she can now do that and I am beyond proud of her for the changes she is making because they haven't been easy.

Back to my failing body. Migraines are back and I have been to the ER 3xs in 2 weeks for them and the ER docs start to get there depends in a bunch because they don't want to keep giving me stuff and I need to see a neurologist. Hey derp head, I have one but I can't see her for 2 months so I switched to a different one and when I saw him he said oh you are here for migraines they should have put you with this particular neurologist who specializes in headaches....that can't happen until July 17th which is all in my chart for the ER doctor to see. pause with me for a huge derp derp derp derpy moment......ok now once again my mom really came  through for me she sees a pain management specialist who does botox injections (which the other neuro said they would end up doing after July 17th)she gets hers done there and her doctor is very very nice and my mom was able to call in and explain my hot potato patient aka: screw you patient status and they said oh no she can't wait that long there is no way especially with all of my other ailments because they will work together to fight against me so June 13th I will have an appointment with him but it can still take months to get the botox approved. He does do very strict medication monitoring so he could help me in the meantime.

My PT has been put on hold because my heart rate was going too high and I haven't been able to keep much food down and last time I went the therapist said she could tell I had lost weight and no more sessions until I see my Doc on the 10th of this month. So I finally feel like I am doing something right and this occurs. I was enjoying PT and felt hopeful for once in a veryyyy long time now I just feel sick, lonely, confused, disappointed and lost. The only thing that is keeping me together right now is that God is holding my heart and won't let go. So here is your super depressing update sorry about that, it's life I guess.

re-realize

It is kind of weird how most of the time I go about my days doing what I have to do without thinking too much about my entire situation but more so how to get through that day without causing myself unnecessary CNS dysfunction symptoms but at random times I will all of a sudden re-realize my entire situation and how much my life changed all from one day. This can lead to reflective thoughts (like now) or complete emotional breakdowns depending on how sick I am feeling at the time. I have had a harder time coping with the entire thing in the last month and a half and despite an upped dose of depression/anxiety medications I knew I needed more so I had my first visit with my new therapist at hope crossing christian counseling yesterday, it took 2 hours to get through the intro to my life but she seems to really get it and she has already begun to teach me via pressure points ways to relax. I don't want to just go into a room and talk and walk out because you can do that for a lifetime; it is the coping skills that I want to take with me that I can use outside of her office that will make the difference. So, I feel good about that....despite my life being compared to Job, not like I haven't heard it or said it before!


Monday is dauntingly sitting in the back of my mind as that will be my first day of PT. My electrophysiologist told me from the beginning that they are going to swing the pendulum of each little portion of my CNS, one at a time way out and then try to re-align it at each visit and the goal is to get one part to swing out and then re-align fairly quickly before moving onto the next section. When I swing it out even a small amount I feel sick so my doctor has told me that it will make me really sick because they are going to push it out farther then I have done yet. I have some preventative meds and some meds for afterwards but they can only go so far, we will rotate zofran and compazine and take some before as a preventative measure and my heart and BP meds might need adjusted during this time as well. I will have to suck up my throat burning in order to drink gatorade because my body won't manage my electrolytes during this time and I will have to provide them. My IV fluids will most likely need increased due to nausea and just the PT itself. So, I am nervous about going and I have been stalling since February so I can't stall anymore I have to just go for it because I can't stay where I am at, moving forward whether it sounds fun or not is my only option and all I can say is that I am so thankful to have God who will probably have to carry me through these times ahead but I know He will as long as I step out in faith He won't let me go so this is what I am trying to find comfort in as I prepare for this next battle.   

One of those times in life

I have had some really rough times lately. More down than up. I push through some of it to make it to church or out with my extended family but it is just beating me to the core. Satan is really trying hard to defeat me and given my track record God is letting him do his best with one rule: you can't kill her. I don't know why God is allowing all of this in my life but let me tell you tonight I am really struggling to keep it together and not give up and curl into a ball until magically I am better again. I know I can do all things through Christ who strengthens me but I feel like I need an adrenaline rush of strength right about now because it is just not there. I spent Saturday in the ER with a migraine and it took a lot of drugs to get rid of it and it is very faded but still hanging around in my left eyeball and I had an upper GI last Thursday to figure out why I have such bad tongue and throat pain and the imaging and biopsies came back perfectly normal so, it is unknown why my throat feels like it is on fire and all I can eat is ice cream and I can barely drink water due to the intense burning. My doctor has said he doesn't know what to do at this point; my stomach shrank to where I could stop eating all together and wouldn't notice and I haven't decided if it is better to not eat than to only eat ice cream because really I could go without that. So, Migraines and a throat that literally feels like it is being burnt can be added to the list.



I caved and setup PT, my first appointment is Monday at DePaul. I am dreading it because due to my CNS condition it will make me really sick after each session as if I am not sick enough already. Due to setting this up though I did get a call from my electrophysiologist who left a message on my machine telling me that I don't quite have my CNS (autonomic dysfunction) description correct. Basically I haven't wrapped my head around what it really means. So, hear is what I was told. It is a traumatic brain injury but in the form that people think of normally. It is usually thought of as a blunt force or shake of the brain that cause inward and outward signs automatically but in my case it is an inward traumatic brain injury within my brain and the connections. The "wiring" and connections suffered a severe trauma at the onset of my seizure and POTS that they misfired and are continuing to misfire so it is basically the aftermath of an inward wiring traumatic injury. I have a couple of out outward signs such as balancing issues and some issues with my speach but most are internal where my body can't handle everyday fluctuations and when it goes postal and has a misfiring hissy fit I can pass out, puke, have my face be really hot and bright red while the rest of me is cold and much more. If you just look up what the CNS controls you could see how having it not be in control could be a problem. So that is fun.



I went to the grocery store today and almost passed out and couldn't find stuff to buy because things look good but I know the burning that will follow so I can't eat it. I am contemplating since ice cream is so bad for you if I would be better off not eating but that is also really bad. I can't even drink ensure anymore to get nutrients. So, yeah satan is trying really hard but he has to go through a might God that has my best interest in mind and let it be for his glory if my life is a battle of spiritual warefare I can only pray that in the end God is glorified and people will see Him through me and it will only make that day when He calls me home that much sweeter and I can only imagine the joy I will feel knowing it is over and God will forever reign. Really, I don't see why satan even tries he knows he won't win and I know he wants to take as many with him as he can to "one up" God or something but seriously dude this is one person you can NEVER one up so you might as well GIVE UP.