secret thoughts...

I have been writing this for over a week and agonizing over sharing it, I don't call it secret thoughts for no reason but reality needs shared. This is life.



This is beyond hard and there are things I don't share with anyone at all. I hide a larger portion of my thoughts and feelings than you would think, I don't share my negative moments all the time.  It's time for me to give up my secret thoughts.




This journey scares me and digs deep. I question. God, how long? is this really it? How am I supposed to do this? I had hopes and dreams of a family and a life and I always imagined by 25 I would be married with that family I desire so much. I feel like this syndrome has taken all that from me. I mean God is going to have to literally plop a man in front of the invalid in the bed for any of those hopes and dreams and wishes to occur. I was always told that God will give me the desires of my heart and I thought I knew what that meant, I was wrong. let's just say this is not what I (in my broken mind) think the desire of my heart is. I have been learning that my desires are not exactly God's desires, God's desire is the one promised to me, not my family, love, health or any other earthly desires. This process  has been filled with so much heartache.




Heartache is basically a 24/7 thing as I lay here and look at these walls and stare at the stucco on the ceiling day after day after day. Knowing there is no cure and that I have exhausted my treatment options is crushing. This, right here could be my life for all my days on earth and I can't even begin to explain how scary, daunting, and just the deep deep dent in my soul that happens every time I re-realize it. We are talking daggers here. Some days the tears just don't stop.  I watch friends get married via post wedding facebook pictures because I can't even accomplish being there and it breaks me. Every time. It feels like the world is moving while I stand still, stuck.




I never would have imagined that I would be thrusted back into this world of illness again at all let alone all this. Relying on IV fluids, formula, and meds to keep me alive. The surgeries, the hospital stays, the ambulance rides, all of it. I thought it was behind me. Well, shows what I know. The blessing from my past is that I learned what NOT to do the first time around.  I now know throwing God out the window doesn't work out very well. In this war I am trying to continuously remind myself of what is true. He is my one and only source of hope, peace, and comfort. He guides me , loves me, and forgives me. He is the creator and sustainer of my life and I know He could heal me but I also know that He may not. That's the hard part because His plan is so unknown and through my eyes it is hard to see good coming from being like this. forever.


It's surreal that these are the only things keeping me alive.

It's reality though. I have to wonder what God is doing with this reality of mine. I find some comfort knowing the bible says that this is not in vain and I can't wait to see how it all fits together but for now I battle on one second at a time because that's all I can do, good thing that is all God asks me to do cause I just can't.

serving

I am reading this right now.  YOUR ILLNESS WHATEVER IT MAY BE IS HARD ON YOU BUT REALIZE IT IS HARD ON THE ONES YOU LOVE TOO. It's a lot to be a caregiver. Your problem is not only yours. Keep that in mind.

This book is incredible. It is filled with so much truth about trials, specifically medical ones and how to deal with them through the blood of Christ. It is a personal story of the life of Laura Story and her husband's battle with brain cancer. It's real and honest, and vulnerable. I appreciate her openness about the struggles of life. We all have them but normally we hide them away. If you hide them away it is hard to fully let God use you through it because He has a plan, the struggle is not pointless.  I am learning how to trust God by Laura's example and honesty. God is using their struggle to help others. We don't know what the Lord's plans are and in the moment it is hard to focus and give it to God but when we do hope is found.  It's convicting and has left me in tears many times because she GETS IT, most people don't understand how chronic illness effects the lives of those around you. Your illness is hard and you suffer but it's not only your problem, it is hard on everyone who knows you as they watch you struggle INCLUDING GOD.


Life is hard but would you rather endure it alone or give it up to the one who created you and loves you more than you can comprehend? After all, it's not about you.  This is about letting go allowing God to work through you and your suffering. There is something that has been weighing on my heart. She talks about her desire to do everything on her own and not let others help because that would inconvenience them and rather than admit that she needs helps she keeps going and it's just too much. I DO THAT. She refused to inconvenience the church people and would never admit that she can't keep going. After taking a step back she realized that the people from church who want to serve them are not just doing it for her, but for the heavenly kingdom. Again,  it's not all about you! This is about letting people reach out and serve you because in doing so they are really serving Jesus.


I struggle so much with this. I want control and to say I can do it all by myself but I have reached the point where it finally hit home that I need to surrender my independence and let others serve Jesus through me because it's not about me, it's about Jesus. It's time to reach out against my sinful will. Let it go control freak. Just let go.

Wisdom tooth removal

Praise the Lord. my claim was approved! God answers prayers! I have a few more things in this process that need prayer.

1. The nurse is going to talk to the doctor about when he is available for it
2. One of the requirements is that I have a pre-op visit with an anesthesia
3. matching up when he, the anesthesia’s and an open OR is complex
4. so regardless this will take longer than I had hoped  but pray for peace and comfort while I wait for all of the above to work
5. Pray mostly that it will not take too long to get everything in order , I’m just ready to get it over with.

By the way I just want to thank everyone who is praying and has been here for me because prayer can move mountains and is never in vain. Your support through this messy life reminds me time and time again that I am not alone, even if it doesn’t feel like your prayers are helping, rest assured that God hears them and is faithful.

updates and a prayer request for something this afternoon

So I figured I would update everyone about my crazy life on here more vs. facebook because I don't want to be one those annoying people who posts negative things and talks about health ALL THE TIME. For those of you who have been waiting for my test results, well, good old quest ordered a bunch of the wrong tests so I know absolutely nothing. I will never go to quest again because they always mess stuff up! So instead my nurse came out and drew the blood through the port yesterday and I am waiting for those results to pop up online and I will go from there.


Also I'm excited and a tad nervous because my doctor put me on Adderall  to see if it helps my brain fog because I'm loosing my mind like a dementia patient but I'm nervous about how it is going to make me feel. If you take it I would love your input.


Lastly my prayer request. Ahem I'm slightly ashamed but I need the prayers so here is the thing. I have a SEVERE phobia of the dentist cause of some bad experiences and I go in for a consult with an oral surgeon today and I have the following prayer requests.

1. pray for my severe anxiety that shoots my heart rate up to bad bad levels and drops BP, making me more likely to pass out.
2. because I am nervous it is already flaring up my involuntary movements, shaking and adrenaline dumping
3. This disease heightens everything so every sound from people talking and the drills won't be good, The light that they shine right into your eyeballs is the worst.
4. As you can probably geuss it's a whole plethora of all of my triggers at one time which makes me really sick

Lastly, with all this I cannot get any dental work done unless I am sedated AND everyone so far is too scared to give me anesthesia because of my POTS. It's a long, terrifying battle for me BUT I spoke with an office today and they have me coming in for a consult this morning at 10:15 and I need all the prayers I can get since I am already freaking out. Thank you all. You are all such a an encouragement to me.

no options...

I was told..again.. today that I am out of treatment options and we have to pick and choose what symptoms to treat without doing damage. I knew that already. It just doesn't get any easier to hear it and accept it without crushing my soul. I think with each doctor I see I go into it with a sliver of hope that they will have my cure despite the fact  that I know it probably won't happen. To date I have seen 3 neurologists, 2 cardiologists, 7 electrophysiologists, 2 primary care doctors, 2 GI doctors, 1 allergist, and 1 oncologist and I got the same answer of "I can't help you" from all of them. I'm at the frozen spot and I think this is where I have to learn to trust that God will do what He said and give me a hope and a future, I'm just not sure what that looks like yet.


I don't WANT to believe that exactly this could be what it looks like. It's a scary place but something I have to confront and learn to cope with whether I want to or not. I have questioned God on what we are doing here through all of this and now I wait on God to take this life that He created and do according to His plan. Perfect plan. It's a plan I really don't understand and it's a hard one but maybe one of these days I will learn to let go and let God, who allowed this, to be the one to give me what I need and drag me through it. You allowed it now it's yours. I can't do it so you have to.

requirements

"So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held"-casting crowns

Some days it is so hard not to give up. This disease and it's complications have taken everything from me except life itself and God. That's what I have left and it should be all I need but today the struggle is real, I feel like everything is falling apart while I watch it helplessly and alone. I have the head knowledge to know God won't let go and He is doing great things but my heart isn't along for the ride today. I know my life is in His hands and I need to believe that He is all I require. I don't require my independence, perfect health, people, or anything of this world. I require Jesus and only Jesus. He saves, loves, holds, creates, gives, takes away, restores, heals and provides everything for me.


I know that whenever He calls me home there is only ONE thing that will matter and it's Him. The things of this world will fade away and all of our needs will be met forever in a split second. It's a day I daydream about especially when I feel so defeated. No matter what my brain or my heart says there is hope to be found if I open my eyes and stop sulking for 2 seconds. I will be healed for longer than I will live. I realized this today and smiled as I thought about the fact that I won't always need tubes, medications, formulas, injections, hospitals and all these things that are keeping me alive right now.  Ports, IV fluids, IV Benadryl, blood pressure and pulse meds, seizure meds, blood thinners, calories in formula, pumps, and specialists have to be working in unison in order for me to get through my days.


None of this suffering was in God's intentions but a certain someone just had to be cocky and somebody else just had to talk to snakes. You just can't fix stupid. Well, Jesus can fix stupid and kind of already did; beaten and killed for our stupidity. Love overcomes. I can find hope in the fact that Jesus does not turn away from me even when my heart isn't in the fight and I'm wandering around in self pity. Like today.

irrational minds and what not to say to me.

I have mixed emotions on looking good and healthy and being told that.(insert don't feel guilty if you have done this here) when you have never had an illness like this you don't even realize that what you are saying and more so how we take your words. I'm just going to say it. I HATE WHEN PEOPLE TELL ME I LOOK GOOD it is only acceptable to me if ITS FOLLOWED BY I KNOW YOU DON'T FEEL AS GOOD AS YOU LOOK BUT IT"S NICE TO SEE YOU. You are not doing anything wrong but I am sensitive. It's me, not you. Your words are full of love, I know,  but when you are in this spot it doesn't feel like it. This will not sound rational..  cause it isn't rational but it's still a feeling. I have to admit if you haven't picked up on it yet that I am defensive in my writings. Let me just explain why really quick.

1. having someone say you look good even in love it will put a dagger through you because in reality you feel emaciated and on death's door step.
2. A disease that is all internal just makes you feel like you are being questioned all the time about it and  since people can't see it you feel the need to defend what you are going through internally and get it through to them that you are not ok and you don't feel healthy or perky or good by any stretch of the imagination.
3. I want vindication and when I am seen looking good it feels like that goes away. I feel like just because someone saw me not in bed, they automatically are pretty much saying there is nothing wrong with you. Since you can't see the internal chaos and I managed to leave my bed but feel horrible; it's similar to having doctors tell you that your REAL physical pain is all in your head, you made it up, you are crazy. and we don't treat crazy. It makes me feel like because I left my bed people will not take my disease seriously and will question and doubt if it is real and will think I am on the straight shot to recovery when I know that after my outing I will feel like complete death, while those who saw me think my day is fantastic. I realize how irrational this is but it's important for you to know.

 On one hand I mean at least I don't look like death all the time fortunately.  (thank you schnucks lady who approached asking if I need an ambulance while I stood with the cart AND I actually tamed my hair and was wearing make up for once. How nice of you to ruin my entire day, thanks.) Also, who does that?! I mean I am used to people staring at me because of my cane, port, walker, wheelchair, and the disgusted faces of those who see us pull into a handicapped parking space. For real the judgment is in the air. I imagine they are forming my entire life and all the possible reasons why I look like that. off one glance cause that's people do. I have adjusted to that.


My whole point is what am I supposed to look like? There is a disaster going on inside while I smile, say I'm okay when asked, say I don't need things when I actually do, hide the tears, hide my broken heart, hide my broken body, hide my bruises and hide feeding tubes and ports thus making myself look so much better than I feel. Just wait till I unhide tubes and then we shall see your real thoughts. For those that know me, please don't say it at all or rephrase it like I have above and it will be fine. Totally irrational but don't try to fix it for me, I am aware of how ridiculous I sound but I just have stuff to work on and this is one, bear with me here.