overdue update

This last month ish is really teaching me that  all of my hope needs to come from God. I'm sure most people can remember a time when it feels like your whole life is falling apart and you can only sit back and watch it go down. I'm facing that right now, one day I want to have a cheerful blog post for  you all but that just isn't going to happen right now, life is hard.

About a month ago I saw the director of dermatology with Washington university and he told me he doesn't know what my issues are but he said we will figure it out and he said he will not pawn me off on another doctor because we will figure it out it just takes time. I left that visit feeling very hopeful that someone will really help me. He ordered some tests and stated we will start with the basics and then work from there. Sounds fantastic. I got a boost of hope.

Well, I got a call that I wasn't expecting and my heart dropped as the nurse proceeds to tell me that all the test found nothing other than confirmation that I have dysautonomia and that he doesn't know what is going on but he can't help me and told me to follow up with the immunologist. I told him that the immunologist has no clue and can't help me so sending me there is pointless. He just said he doesn't even have any doctor to send me too or any treatment measures to take so I don't need to see either one again.

To be honest I am devastated. I am all the way back at square one. As if that wasn't enough I contacted my pallitative care nurse to see if we can manage my pain better and I was told that the doctor is against helping me manage it better. Apparently from the very beginning he has said he wants to take me off ALL OF MY MEDICATIONS because he doesn't "know if we are treating the syndrome or the side effects from the medications I am on" ... he said "I don't understand your resistance to stopping meds that could possibly make you worse in the long run. I believe we all are after the same goal, to improve your health and quality of life."

I want improvement but I tried to go off things and it got bad fast and I am not doing that again. He seems to think I will "get better" . The problem is my body doesn't respond to things like everyone else does and this is why I am on as many medications as I am. It's been a trial and error process for years and right now I am doing better on the medications I am currently on than I was before. My concern in my self advocacy is that this condition is not well known and is very treatment resistant and I have exhausted those. That's why I was sent to palliative care in the first place. Without a miracle all options of truly making a major good swing in my health and "getting better" have been tried through a very very long 4 years of fighting to get me to where I am so after a discussion with the pallitative care nurse it looks like I have convinced them to just keep doing what we are doing, not what I was hoping for but I will take what I can get.

Even though I am confused, frusterated, lost, and discouraged I know God is doing things for His glory and I don't need answers to trust. My heart is not in it yet but I am working on that. p.s- God gave me a glimpse of His love today because it looks like my insurance company is admitting that they messed up and all of my bills are their responsibility so it would appear that we owe NOTHING. Happy tears went down today and God is good, I got my answer to a prayer request I have been depressed over for months. The war is already won.

"Day after day, night after night
I will remember, You're with me in this fight
Although the battle, it rages on
The war is already won
I know the war is already won

Surely my God is the strength of my soul
Your love defends me, Your love defends me
And when I feel like I'm all alone
Your love defends me, Your love defends me"-Matt Maher

struggling-prayers needed(novel warning)

For a multitude of reasons I woke up this morning just feeling lost. I don't know what I'm doing in life, what God is doing with me, what my future holds, and I'm battling with the "how did I get here..again?" sadness and defeat.  I feel so alone. Not the kind of alone from a lack of physical/prayer support  but the alone in a world I never wanted to enter, alone in the pain that no physical support could even touch, the alone in my day to day fiasco of keeping myself alive, the alone in the fact that nobody can truly understand how hard this life of mine is day by day. It's brutal in every possible way.


I feel like I'm not living but just existing.  I am caught up in the fact that my hopes and dreams appear to just be fading away. Everything feels like it's fading. It's just me and God. I know He is always me and God but the feeling of it is heavy hearted right now.(don't judge me) I know He is all I need and He will get me through this, I am just stumbling through life at the moment. It is an odd feeling when you reach the point of realization and reality that God is truly 100% ALL you have. Yes, I know He is all anyone has but the feelings that come along for the ride really mess with you.


Unless God decides to do a miracle (which would be #5,000 in the book for me!) this is my reality. I am still pretending it's not. My dad and I were talking and he used the phrase "disabled adult" and I almost lost it I don't want that label. It feels so final. Just typing it was hard. How do you even begin to wrap your brain (what's left of it lol)  around the fact that this might be it. I might be stuck like this forever. It scares me. I don't even know what it feels like to be healthy anymore, I can put on a brave face like at church and stuff even though it feels like my heart is crumbling. Someone please tell me where my life went.


I lost my ability to drive, my ability to go places or be outside, my ability to be left alone and my ability to pretty much do  everything that I loved. Just poof gone. I now spend my time in bed with tubes going everywhere to keep me alive. Again how did I get here?! I don't know but it is so defeating. Please God don't let this be my life forever and if you choose not to you gotta carry me because I got nothin'.