The more broke you are the more the light gets through

Ever since I got sick I made the choice to show my pain, suffering, emotions and hard times instead of hiding it all because believers tend to do the whole "we have Jesus so we have to be 100% happy at all times".  thing. Which could not be more wrong. Why do I share the raw times? In the majority of churches it is "expected" to pretend like everyone is okay. If you ask people they say "I am fine" instead of being open about the trials they are living with because church is the put on your happy face cause God loves you place.   Showing and being open about our trials shows others that we are not perfect, and we can let others see how we as believers deal these trials. People are watching.  Always, to see what you choose to do when life hits you out of nowhere. You can be bitter and hide everything or you can show the power of love in suffering and God's ability to make new and heal you. If you hide that you are missing a chance to let people see God.

"Don’t be ashamed of your past

If you’re shattered like a piece of glass
The more broke you are the more the light gets through
Show your wounds and your flaws
Show them why you still need the cross
Let them see the work He’s doing in you
That even in the darkest place
His love can make you radiate"




As believers we need the cross just as much as the lost.












"Doesn’t matter how deep, how dark the night is
Keep hoping, keep on shining
And they’ll see His light burning in your heart
And if the road gets rough, just keep your head up
Let the world see what you’re made of
That His love’s alive in your deepest parts
Like a flame, like a burning star you can shine right where you are
He made you to glow in the dark"

IF HE DOESN'T COME THROUGH

The last 2 weeks have been so hard. Emotionally, physically and spiritually.  I am tired of this every single day battle with no end that I CAN see.  I am praying that God does a miracle next Wednesday at the clinic; my heart longs for one more than anything but I know He is not a magic 8 ball and whatever His will it will be done. Trusting His will is one of the hardest things I think believers face. We want what we want. right now. We find our self mad at God because it didn't go like we thought it should. We all do this. I am working on trusting that His will for me is so far beyond what I can comprehend and finding peace in it regardless of how it goes.

Without God there would be no hope in anything let alone a miracle. HE is where hope and peace is found therefore without faith I couldn't believe in miracles and I could not have a fighting chance in this fallen world or even the choice to go to heaven or hell. We would all be condemned . If God does not come through on His words we as an entire world are screwed. This fact brings me to my knees in joy and thankfulness because He will ALWAYS come through. I have no idea what I would do if heaven didn't exist. This world is beyond cruel and if this is all we get, I don't want it. If heaven didn't exist not only would I not have a single thing to look forward too but I would also never get to hear these words that I cling so tightly too every single day:

"My child, who I have washed clean with my own blood your suffering is done. POTS is cured. forever. You will never be sick ever again and you can now enjoy the things I have created perfectly since you couldn't on earth. Your eternity with ME begins now."

Now THAT is something to look forward too because in my current state I don't really have much to be excited about. (beyond the tangible hope for a plausible miracle)

the answer I have been waiting for!!!

 I got a call back (5 years later of course) yesterday from my doctors office and they all had a pow wow and said I only have 2 options left. oh goody. Thankful that there IS STILL options though.

 Here is the plan I have been waiting for: there is a POTS clinic at barnes (what the heck. it's been over 2 years and about 15 doctors and I was never told that it exists in the first place or I would have been there by now. You would think. Barnes is going to call and make me an appointment.

 I have major mixed emotions about this, I am terrified that they will say " I can't help you" or "at THIS moment Your pulse is only 98 which doesn't really prove POTS. and your blood pressure isn't that bad" because on a rare occasion my vitals will slightly improve.. and then crash.  Doctors have this thing where they don't believe it if they can't see it.  PLEASE PRAY. This sounds wrong but pray that my symptoms flare up for this appointment because it gives them something to work with and I won't be blown off. I need help.

 My biggest fear is relatively speaking that they will say I don't qualify. I feel like my heart can't handle that at this point, it's already shattered. I KNOW I KNOW I KNOW I am looking to the future which is pointless but it happens. Pray for peace, comfort, and wise doctors who truly believe me and can give me hope outside of Jesus. I am barely clinging on right now. In case you wondered my ONLY OTHER OPTION is to go to mayo clinic or the cleveland clinic. That's it. I am hopeful but I refuse to let that sink in because I know oh so well that I could still get the "I can't help you" and I have to gaurd my fragile heart. #jesushelpmepleasecauseicantdothis 

 

update (or lack thereof)

My doctor's office called yesterday and I am not getting very far. The only consensus is that none of my current doctor's know what to do besides sending me to someone else. The good old doctor hopping, hot potato strategy. I am really just floating along in this waiting game. My doctor is trying to reach my old doctor for recommendations but that divine miracle of accomplishing it hasn't occurred yet. I have been told it might be someone at SLU.

Really, I feel beyond frustrated. This scenario feels like a repeat of what I went through in high school. I have a lot of respect for doctors, I worked for them, I have been a patient of a billion of them, but in the end they really are just super smart HUMANS. They don't know everything. God is the only one who knows all. Humans will fail and be clueless and this is where I stand...again...clueless land. It's really a depressing place to be and at times it can feel hopeless and always leaves you feeling lost. I stalled on writing this because well words. Words are hard. I haven't really wrapped my brain around where I am and what I am doing right now besides the fact that I don't want to be here. This can't be happening again, right?! wrong. The minute I begin trying to let it sink in, I fall apart. I have been staring at this for 10 minutes now and have not come up with anything else to say besides I am going to re-write my testimony because I have to prove to myself that God brought me through this once and He can do it again. In His timing. Let THAT sink in instead.

I am not always strong

I don't always feel the strength of God walking me through this. I am not always smiling. I am not always tough. I don't always lean on God. I try to take this on by myself. I feel like giving up sometimes. I usually don't post anything about this but I am human and I struggle just like everyone else in this world so why should I "hide" these hard times? My reality hits me like a train. I feel so empty and broken. Can't this be just a nightmare that I can wake up from? Is this really something I will battle for my whole earthly life? Am I really sick enough to have tubes coming out of my body? Do I really have something with no cure? I can't even. This reality just hits hard. I'm only 24. God what are we doing here? I have so many questions without answers.

God, you have to drag me through this since you allowed it. Right now my glimmer of hope comes from the head knowledge, to know that He is still in control and always will be. I cling to the fact that one day I will hear Him say it's over now. Cured. Done. forever. eternity. My heart doesn't feel like its still in this fight but my brain is full of the pure facts about Jesus and I know He has this all in His hands. Even when I don't feel, I KNOW. I KNOW.

Love and valentines day!

I admit, I am a valentine's day hater. So many reasons why. You should love your spouse everyday, I know that is what everybody says and its a cheesy thing but so true. Both genders should feel loved before they go to sleep every night. We are not guaranteed tomorrow or 5 seconds from now. You might not have a valentines day to celebrate because it could be ripped from you in a blink of an eye, we only have one life to live and to love.
 I am speaking from a side that cannot relate at all to being in a relationship, let alone a marriage but when you speak from this side it comes from what you have seen. I couldn't even tell you the lessons I have learned about love by watching love build itself in a relationship but also watching it crumble and cause so much hurt. I have witnessed so many non Christ centered relationships fall to pieces. You see if you leave Christ- who is love- out of your relationship then how do you actually have love to sustain your relationship? It's not true love.
True love. What does that look like anyway? We have the best example ever known of pure, true, holy love. God chose to allow his own son to be killed for our wrongs even though Jesus knew no wrong. So most know the physical aspect of Jesus's death but it goes so far beyond that. When Jesus took the bullet for us he took on every SINGLE thing we would and have EVER done wrong on himself to the point where his own father couldn't even look at him anymore. Think about it, you are not only told constant negative things and being blamed over and over and over times a billion even though you didn't do it. We are quick to lie and say we didn't do it because nobody wants to feel the guilt and shame that makes your heart drop when we say we did it in honesty because we did.
Jesus. He chose to take on all the guilt and shame and heart drops of the entire world and He truly didn't "do it". any of it. WE DID. His own dad couldn't even LOOK at him due to what WE DID. That is love. True, holy, perfect love. A love that can only be felt by His death. We get to feel and experience this love because He chose to give it to us and it can ONLY be found in Him. Not in your relationships, people rely on there relationships to make them feel loved and it is a failing, imperfect and potentially harmful love without Jesus. news flash: your significant other will fail you. a lot. Hurt will come. If you take Jesus out of this relationship the hurt will build up and leave you shattered. A Jesus focused relationship allows us to experience true love and build our relationships on this perfect love that will never fail. When the hurt comes (because it will.) you have Jesus to mend and mold if you focus on Him and let Him in. Jesus binds your marriage and your heart.
What foundation are you building your love on? I have learned that this question is critical to any and all relationships. I can only pray that some day, in God's timing I will have a marriage based on true love. In the meantime, you can find your self worth in THE ONE who made and died for you, ALL in love.

pivotal Week

This week is going to determine a lot for my life. I am trying to just give it up to God but I am not good at that, Indian giving at it's finest.

1. My primary care already spoke with my "new" electrophysiologist who refuses to treat with ports and he said that they need to contact my old electrophysiologist, I am really not sure why because she is VA so I can't actually see her. IDK they might just have questions, I have no idea!

2. I should have a plan put together within the next 48 hours, please pray for this. It could go absolutely any direction, I have no clue and that lack of knowledge (faith) has me a little terrified.

3. Wisdom, peace, comfort, and compassion are huge prayer requests as I go into this unknown world.


4. I was at least able to get ahold of my neurologist about my muscles locking in my neck and back to where I can't turn my head and it gives me major migraines. Upping my muscle relaxers and getting me set up with pain management so I mean I got somewhere with something, I guess.

The words pain management brings back a world of memories and reflections. God has got me through soooo much. I should be able to rest assured this will work out the same way.


That's all I have to say, updates to come.

One Life. One moment. one tragedy.

no options

I have hit a point in my condition where I am currently out of options, medically speaking. If you read my last post about the new doctor you will see that he says Dr. Quattromani is who I need to see because his treatment plan is not something I am on board with and he doesn't really treat complex POTS cases anyway and I should see a neurologist because it is really a brain signal issue, not a heart issue. I have seen one neurologist who specializes in POTS and he told me to go get a nice firm body and then I will be fine. My current neurologist does not know much about the condition. He said really Dr. Q is who I need to be seeing even though it was 2 hours away because there is nothing else. The Cleveland and Mayo clinics would not do anything besides what we have already tried so that would be pointless. I stated awhile ago that Dr.Q was setting up a clinic and will still see patients and all. Well, I called yesterday and was told that she will not see me and I spoke again today with her nurse who said she will only approve my infusions and sign off on them for a little while because you have to regularly see your patients in order to keep that going and the clinic will not be set up anytime soon.

I have no treating doctor for my POTS at this time but they say even if I did it would just be maintaining my current state because there is no cure possible so we treat symptoms and they do not know any other ways to treat me. I will be seeing my primary doctors nurse practitioner tomorrow who will then speak with the doctor while I am in the office and see if there is ANY steps to take.
The newer doctor said to focus on quality of life at this point because Dr. hopping will not help because there are not options.

I am lost, defeated, shattered, scared and I just want to wake up from this nightmare. I am struck way down but I have not lost all hope. I have a savior who has saved my life so many times and is walking this unknown journey with me, I will not give up. Palliative care has been discussed and will be discussed more tomorrow to help in the treatment of symptoms. Please pray for tomorrow, I need all the prayers I can get. For a peace despite all understanding on my part and wisdom for the doctors. Pray for me to not loose hope and for my family as we all are involved in this situation. I am not done fighting. I am not ready to stop and say welp this is it and I will be like this forever, I am not done yet.