going under

I haven't written in awhile because words just are not happening. I am going to try but if it doesn't make sense just pretend it does. mk. The decline was that I had two seizures, one day apart with no known trigger. My first seizure was witnessed and in God's perfect timing I had a friend over who knew what to do. She put me on my side and called my dad who was just running up to Walgreens really quick. I kept going in and out of consciousness for awhile. It is the weirdest feeling when you come to and everyone is staring at you and you have NO IDEA what is going on. I remember asking my dad what happened, he answered and the out again I went. It took awhile for me to compose myself but I came out of it and contacted my neurologist who said it is just going to happen at random with my syndrome and I am already on seizure medicine so it must have been a fluke and not to worry about it.

No fluke. The day after I woke up super confused and realized that my tongue was hurting and I went to look at it in the mirror and noticed spit up on my face. I had another seizure in the night and bit my tongue fairly hard but I am blessed to have woken up in the first place, God isn't done with me yet obviously. There are symptoms that occur after a seizure but in my previous ones it all was gone within about 24 hours. This is a different story. My usual symptoms include headaches, confusion, drowsiness, muscle soreness, memory loss, and weakness. Like I said this all usually stops within 24hrs but these symptoms are being persistent. My muscles lock up so bad that at times I cannot even turn my head and that escalates to an increase in the frequency and intensity of my migraines.

So I made an appointment and went to see my neurologist and he said that they were very violent seizures and the muscle pain and increase in migraines could last for months. We discussed pain management and I left that appointment feeling so hopeful that he will set everything straight and send letters to those doctors that are taking the hands off approach or not palliating like they should. Great right?

no. in typical doctor world what he said to my face is not what he put in my chart. He didn't write anything about managing my pain like we talked about or sending letters to the doctors saying they need to step up. Seriously he just put that we are increasing my seizure medication and to follow up with pain management. My heart is in a million pieces right now. I DON'T HAVE A PAIN MANAGEMENT DOCTOR BECAUSE 4 OF THEY STATED THEY CANNOT HELP ME. This is also why I went on palliative care because I ran out of options.  The problem is there is some reluctance to do things and I thought after this visit it would be worked out. I talked to my palliative care nurse for 30 minutes last night and she will speak with the doctor but it is not likely that anything will be done. This syndrome is relentless. I will continue to have pain popping up in various severities and places because that is what goes along with the ride of my syndrome.

unbiased comfort measures is what I thought would happen because it's palliative so it should be do whatever it takes regardless of my age or any other factor but it's not working out for me. I'm defeated. With God I do have hope though because He is all that is keeping me from going under.

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'.

burdens and expectations

I think (for me) the emotional/mental toll of being chronically ill is by far greater than my physical symptoms. It beats you down to levels you didn't know existed. It provides the perfect opening for Fear, hopelessness, sadness, depression and anxiety to work it's way in and create a big mess that nobody can see. It's a prime example of Satan at work.


 I could not tell you how many nights I have spent in tears because just the thought of facing another day overtakes me.  The mental knowledge that I may not get better here on earth is so defeating that sometimes I want to throw in the towel and curl up in a ball forever so I don't have to face it. No matter how many times I am told that I am not a burden the feeling just doesn't go away.


I expect so much out of myself  when deep down I know I will never meet these expectations I hold onto. This mindset leads to despair. (I wouldn't recommend it) I get super frustrated about not being able to do the little things that seem so simple so I attempt them anyway. My dad says the same thing every time I have to text him that I am stuck on the floor. 1. are we making poor choices again? followed by 2. now why did you think you could do ________ in the first place?! 


 I long to be able to do the things that someone who's 25 can do and I struggle so much with loosing my independence that I attempt my poor choices anyway. Then I get myself stuck. It's a daily battle in more ways than one. It's hard to see how this is for my good but Jesus promised it is so I try to step back and re-focus myself toward the TRUTHS we are promised by a God who is way bigger than any illness and can restore my heart.


This has been, is, and will always be my favorite verse of hope.
 Jeremiah 29:11

 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future 

God's will

I have heard people in trials say "thy will be done" and I have always thought that there is no way that in the midst of so much hurt one could say that AND MEAN IT. It's an act of complete surrender that I haven't chosen to give up yet apparently . It boils down to fear (at least for me anyway) as odd as it may sound, I'm scared of what happens if I let go. It's sin and a lack of trust, I know.


Giving everything up and basically telling God to do what is in His will for me; even if I don't like how it feels is scary because I don't know what that is, I don't know what God's plan for me is and I struggle with the idea that maybe ALL THIS really is His plan. The thought of it causes me to think that I just asked God to give me the hard "do you trust me" tests. I already feel these tests being thrown at me left and right and any increase in them feels like more than I can handle.


I can't handle it. It's already hard enough. I'm struggling with it but in these moments I have to go back to the basics and remind myself that God is good and everything He allows is for my good even though I don't understand it and so far I am not a fan of this plan but that doesn't change the fact that it is for my good. He has carried me this far so why would He drop me now. That knowledge is comforting to me through my battles. I may be far from being able to say and mean "thy will be done" but my prayer for myself is that someday God will help me get there and I know He will.

 Let every heartbreak
And every scar
Be a picture that reminds you
Who has carried you this far
'Cause love sees farther than you ever could
In this moment heaven's working
Everything for your good

extend that grace

My life is intimidating. I get it. I'm intimidated of  myself sometimes.




What do you say to someone who's sick every.single.day that isn't awkward? What do you do when you cannot relate to one's suffering? How do you approach talking about your happy times when in the company of the always ill? Can you share your "petty" comparing prayer requests without guilt? Does every conversation have to begin with "how are you feeling?" Does illness have to come up in every conversation? Are you freaked out by medical equipment?






 I know these things can race through your brain when you are healthy. In honesty, I cannot blame you for it, it makes sense so I will extend that grace to you who do what you can to avoid even being in these encounters at all. I understand it but let me help you.






1. I don't expect you to go too far from your comfort zone. If you are uncomfortable with the thought of taking me places, please know I don't expect you to do that.


2. If you are afraid of me passing out in your company it is ok to say you don't want to be alone in the vicinity.


3. If medical equipment freaks you out please note I don't need you to touch it. (besides wheelchairs)


4. I am prepared for my surroundings. If I am out and about with people who haven't been around and even on occasion with those that have I will give you the rundown of "what to do if"


5. scared that in the moment you won't remember the rundown? I have paper copies of that along with all medications, emergency contacts, all the things that a paramedic would need.
6.Talk to me. It's simple. Let me answer the above questions for you.

• It's not awkward unless you make it awkward. Once again just talk to me about whatever.
• When you cannot relate to one's suffering you listen, Please realize I don't expect you to relate so take that load off also, I don't want you to understand because if you did it would mean you were going through this too and nobody wants that. Just listen to me, it's all I ask. 
• talking about your happy times is ok even though it makes me a little sad sometimes that does not mean I don't want to hear about it at all.
• SHARE YOUR DARN PRAYER REQUESTS puhlease. pain, suffering, hardship, it's all HARD so the next time you hold back because my issues are "bigger than yours" please slap yourself 5 times.
• Please don't forget I am still human. My daily life might look different than yours but don't let that intimidate you. I have the same thoughts, emotions, and issues as anybody else.

The moral of the story is that you can communicate with me like you would with anybody else. The worst thing you can do is pull away. Don't let my list intimidate you either. It's okay if you happen to slip up, I won't hate you. Grace is a thing. I hope this helps you feel more comfortable. A lot of people just don't know what to say but now you know.

vulnerable

I have not written in a long time because sometimes I just don't have the words needed to form any kind of a sentence. Also, I rarely feel self conscious about my illness and I usually have no problem dumping my heart out but that just hasn't been the case lately. I have found myself feeling overwhelmingly vulnerable about everything. This fact has changed my thought patterns on everyday life.


It gives sin a chance to cultivate. Instead of feeling happy for others I caught myself slipping into the comparison game. I am finding it particularly hard to sit back and watch as others celebrate "big life events" without self pity. My heart longs to be normal and follow the usual path of marriage and starting a family. That is obviously not happening and I don't know if it ever will, just because it is the desire of my heart in my eyes doesn't mean it is God's desire for me. Those don't match up perfectly because mine is feelings based which can be led astray.


But my feelings are still real. I'm sure you can understand why I struggle. It's the feeling of "but I want ______ too" Comparison and discontentment with the path laid out for me can consume me and in all honesty it has been. I don't see a way out that will meet my hopes and dreams. I don't want to be sick anymore, I want to move on and leave this all behind me. I mourn the loss of what I imagined my life would look like. I struggle with questioning what God is doing here in my mourning. It's hard.


Knowing that my heart is still in the hands of Jesus regardless of how torn up it may be and as I let truths slide back into my consumed heart, I can only pray that God will give me the strength and comfort I need to shape my heart.

"This is not the place I thought I’d be
This is not the road I had in mind in front of me
Don’t see the reason, and sometimes I’m scared
But I know you’re leading, even when I don’t know where

So I’ll put one foot in front of the other
Take one breath and then take another
Lead the way, God, I’m gonna follow you
‘Cause you’re faithful every moment
When it’s easy, when it isn’t
You’ve never led me wrong, never let go
Your love is strong and your arms still hold me
Right here to forever
Like a child and like a treasure
From the start to the end, through the ups and downs
You were with me then, and you’re with me now"-Mallory hope