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.

glory around the corner

1 Peter 4:12-13

Friends, when life gets really difficult, don’t jump to the conclusion that God isn’t on the job. Instead, be glad that you are in the very thick of what Christ experienced. This is a spiritual refining process, with glory just around the corner.


I was sitting and talking with my psychiatrist about a months worth of updates and she asked a rhetorical question of what now?


What now? I have been living this life of sorrow for over 2 years now and my nervous system is failing more and more everyday. This is my life. autonomic dysfunction consumes me but doesn't define me even when it feels like it. I basically stared at her and I had no words other than I don't know. I have a debilitating extreme (as all my docs say it's not usually this bad but I am treatment resistant, of course)  case of POTS and autonomic dysfunction.


 The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of Dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.


 Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, brain fog, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath.  Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position.


There is no cure. Here is what my quality of life is:


 Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure. The quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure.


I know this is lengthy but it helps you understand what I am dealing with a little more. Anyways, back to the whole what now issue. That question was a slap in the face because it made me realize that without a divine miracle this is and will be my life..forever...How in the world do you come to terms with this? You know that at some point  you will have to ACCEPT it and that alone feels impossible. To learn to be content and okay with having this and not live in constant depression means I have to do something. I have to find things that make me happy, that I can find pure joy in and things to look forward too. Right now, I know none of this. There isn't really anything for me to be happy about right now. Given all of this I am going to start seeing a Christian counselor and getting professional  help to learn these things.


Next Thursday May 19th I will be seeing this counselor and I ask that you would pray for me as I begin this treatment and learning how to put hopes in the right places. It's like what do I put my hope in now? Yes, I know Jesus. So easy to say not so easy to do and this is why I need help and why I need your prayers as I start another phase of this journey. This long, not an end in sight journey. I know this won't be easy but I know that even in my darkest days I am not alone and He knows what I need it and has the power to heal my breaking heart and already broken to pieces body.

EVERYTHING.

Today has been one of those days where I cry about ev.ery.thang. It's rather pathetic and ridiculous. Multiple times because I used to be really good at spelling and I have to look up the simplest words and let Google spell for me. Then there is the never ending shower thing. Also, because I didn't have the strength to dye my hair and it badly needs it. I can't put my clothes away. I almost fell over the air like 5 times and freaked out since a fall could kill me. Cried because I can't drive and I have lost almost all independence. waiting for my doctors to get meds to help my cognitive self leaves me in tears like every 5 minutes because I should have a brain, I used to have one. I have amazing doctors but I think they all need a Xanax today or something. I need a Xanax today too apparently. Song lyrics make me ball my malfunctioning eyeballs out. I woke up with calve pain and I may or may not be freaking due to possible blood clots. I fear my doctors won't agree on a plan to help me. I cry because this gets worse every single day and I am helpless. I can't think of a part of my body that isn't affected by the monster that has NO cure. and cry some more. Life is hard. My faith is beyond tired but I know where my help comes from. If you would have asked me that during my last sickness I would not be having it, in my mind God failed me. Through that I learned that um life without God is the MOST HOPELESS, DESPERATE, SAD, and LONELY place to be. He is my rock on days like today where hope is fading and I could not be anymore thankful for a God who SAVES. Here is a song lyric/prayer that goes so well with how I feel right now.





Should I just give up?
Lord, I need to hear You speak
Tell me I am loved
Tell me I am known
That You died for me
I am not alone
Tell me I'm Your child
The one Your heart beats for
I can find my strength
Knowing I am Yours
You've always known what my heart needs
And You tell me
You wrote Your name upon my heart
You knew me before my life began
You still have a plan
And when I'm starting to forget
Jesus, You tell me who I am
Who I am

new news. new fears.

I don't share every single symptom and trial within a trial because I would be whining and complaining and driving everyone crazy because NOBODY wants to hear about your health 24/7 and I don't even want to talk about my health 24/7. I have POTS but I am not POTS, I like to talk about normal stuff and what is happening in the lives of others. It shows me the world is not just me in my pity room.


I have a few things to share after speaking with my doctor that moved to the VA hospital and for free she gives me advice and Lord willing she can get somewhere with my docs here (I will explain that shortly)


 For months I have had severe joint pain that wakes me up in pure agony in the night and can last 5 minutes- 2 hours. The joints get sore from just walking as well. My reflexes have gone away except for my right arm, my muscles have become too loose so it's causing me to throw my back out, suddenly collapse and constant aching. I also have cognitive issues that just keep getting worse and worse. My voice slurs and has become even quieter than normal, I can't remember anything like we could be having a conversation and all of a sudden I forget what I was going to say or I forgot the topic of the entire conversation. I also forget conversations that occurred 5 minutes ago, I invert and jumble words and use the wrong word ALL THE TIME, all of this has made communication a very hard thing for me. I don't even like talking anymore because I will forget everything.


sooo my doctor said (and I quote)
" I think you have a severe case of the brain fog that goes along with autonomic dysfunction and the same thing  with the muscles, I recommend Adderall and b12 shots."


Well, this is where the problem arises and all I want to do is crawl in a corner and cry. My primary care doctor so refusing both of them. It is a controlled substance that must be hand given every month. She is in fort Leonard wood and everything she wants to do has to be orchestrated through my doctors here. I am now on a hunt to find out if I have a doc that would help and all I can do is pray one will agree to it and that the doc that wants to order this stuff will remember and be able to call around with my doctors so we can get treatment started asap.


The issue is that the longer I let it go the worse it is going to get and I really would like to keep my sanity. I'm frustrated, sad, concerned, and nervous. Overall I feel defeated and anything and everything is getting to me. I just want someone who will help me. These are doctors helping is what there job IS but in modern healthcare $$$ is more important. I just need as many prayers as possible that this would get worked out and for my emotional state because it is taking a major toll on it.

paths

Music and lyrics just have a way of reaching my soul like nothing else.  I reached the point months ago where watching the tv with it's flashes and stuff overstimulates me to where I have to turn it off and reading is getting harder as everything blurs together. This is where music comes into play. Not only does it provide mild entertainment but it keeps me focused on God. It is kinda hard not to focus on Him when that is what you surround yourself with.


I am really one of "those" country music fan sorta people but there is an obvious disconnect and change in my emotions when this is all I listen too. I find myself crying more, loosing hope, and turning away from God. It is just how life works, you will always be influenced by what is around you. If drinking, sex, lies and relying on fallen people for your every need is how you choose to live your life, your soul will be downcast. Hope and peace is not found in any of that. It's really a perfect recipe for disaster. If I surround myself with things of this world then that is exactly what I will receive, things of this broken, cruel world. I have had my own share of that world and it can drop you to your knees incredibly fast and leave you searching for a way out.


INSERT TRANSITION THAT I DON'T HAVE THE BRAIN POWER FOR HERE.




There is a way out available to you though but it is a ONE way, no through street drive. I am the worst at navigation, always have been. My dad could probably tell you many stories of me calling him because I am lost. I have a tendency to believe that "this different road will lead me to the same place as my usual route". Wrong. So wrong. I remember one time, late at night,  I ended up in a gated community and I pulled into a driveway to call my dad and the neighbor just stared at me the whole time and then he went and got a flashlight and started walking up to my big, blue, falling apart mini van as my dad and I were trying to figure out where I was at and how to get home. Talk about feeling vulnerable! I rolled down my window just a crack so I could hear the man as he asked me who I was and informed me that I need to get out of the community right NOW. I told him I was lost but he would not help me and repeated the part where I need to exit the subdivision right NOW.


I did. Really quickly. Still lost but I didn't feel like a standing target as I drove around, trying to find a street that I was familiar with or really any intersection names that my dad could google map. Eventually, I made it home where a feeling of safety, and comfort hit me the minute I saw my house. I may have balled my eyes out when I arrived there because I knew that could have gone another way. When you stray from a "safe" path, you are left out in the open, exposed and vulnerable to attack. This life is a really long path and we can choose how curvy, narrow, or trafficked this road is. Through the cross, I have no fear of the end of the path, I know exactly what awaits me in the distance but I don't know how each step and construction of said path will lead, as I journey to get there. It is my choices that make up the concrete that composes this path and satan is like the clueless construction worker that can destroy everything with one move. I am so thankful for a God that can restore everything with one WORD when WE CHOOSE to call out to Him.


p.s- GPS's save lives. Legit.