re-realize

It is kind of weird how most of the time I go about my days doing what I have to do without thinking too much about my entire situation but more so how to get through that day without causing myself unnecessary CNS dysfunction symptoms but at random times I will all of a sudden re-realize my entire situation and how much my life changed all from one day. This can lead to reflective thoughts (like now) or complete emotional breakdowns depending on how sick I am feeling at the time. I have had a harder time coping with the entire thing in the last month and a half and despite an upped dose of depression/anxiety medications I knew I needed more so I had my first visit with my new therapist at hope crossing christian counseling yesterday, it took 2 hours to get through the intro to my life but she seems to really get it and she has already begun to teach me via pressure points ways to relax. I don't want to just go into a room and talk and walk out because you can do that for a lifetime; it is the coping skills that I want to take with me that I can use outside of her office that will make the difference. So, I feel good about that....despite my life being compared to Job, not like I haven't heard it or said it before!


Monday is dauntingly sitting in the back of my mind as that will be my first day of PT. My electrophysiologist told me from the beginning that they are going to swing the pendulum of each little portion of my CNS, one at a time way out and then try to re-align it at each visit and the goal is to get one part to swing out and then re-align fairly quickly before moving onto the next section. When I swing it out even a small amount I feel sick so my doctor has told me that it will make me really sick because they are going to push it out farther then I have done yet. I have some preventative meds and some meds for afterwards but they can only go so far, we will rotate zofran and compazine and take some before as a preventative measure and my heart and BP meds might need adjusted during this time as well. I will have to suck up my throat burning in order to drink gatorade because my body won't manage my electrolytes during this time and I will have to provide them. My IV fluids will most likely need increased due to nausea and just the PT itself. So, I am nervous about going and I have been stalling since February so I can't stall anymore I have to just go for it because I can't stay where I am at, moving forward whether it sounds fun or not is my only option and all I can say is that I am so thankful to have God who will probably have to carry me through these times ahead but I know He will as long as I step out in faith He won't let me go so this is what I am trying to find comfort in as I prepare for this next battle.   

One of those times in life

I have had some really rough times lately. More down than up. I push through some of it to make it to church or out with my extended family but it is just beating me to the core. Satan is really trying hard to defeat me and given my track record God is letting him do his best with one rule: you can't kill her. I don't know why God is allowing all of this in my life but let me tell you tonight I am really struggling to keep it together and not give up and curl into a ball until magically I am better again. I know I can do all things through Christ who strengthens me but I feel like I need an adrenaline rush of strength right about now because it is just not there. I spent Saturday in the ER with a migraine and it took a lot of drugs to get rid of it and it is very faded but still hanging around in my left eyeball and I had an upper GI last Thursday to figure out why I have such bad tongue and throat pain and the imaging and biopsies came back perfectly normal so, it is unknown why my throat feels like it is on fire and all I can eat is ice cream and I can barely drink water due to the intense burning. My doctor has said he doesn't know what to do at this point; my stomach shrank to where I could stop eating all together and wouldn't notice and I haven't decided if it is better to not eat than to only eat ice cream because really I could go without that. So, Migraines and a throat that literally feels like it is being burnt can be added to the list.



I caved and setup PT, my first appointment is Monday at DePaul. I am dreading it because due to my CNS condition it will make me really sick after each session as if I am not sick enough already. Due to setting this up though I did get a call from my electrophysiologist who left a message on my machine telling me that I don't quite have my CNS (autonomic dysfunction) description correct. Basically I haven't wrapped my head around what it really means. So, hear is what I was told. It is a traumatic brain injury but in the form that people think of normally. It is usually thought of as a blunt force or shake of the brain that cause inward and outward signs automatically but in my case it is an inward traumatic brain injury within my brain and the connections. The "wiring" and connections suffered a severe trauma at the onset of my seizure and POTS that they misfired and are continuing to misfire so it is basically the aftermath of an inward wiring traumatic injury. I have a couple of out outward signs such as balancing issues and some issues with my speach but most are internal where my body can't handle everyday fluctuations and when it goes postal and has a misfiring hissy fit I can pass out, puke, have my face be really hot and bright red while the rest of me is cold and much more. If you just look up what the CNS controls you could see how having it not be in control could be a problem. So that is fun.



I went to the grocery store today and almost passed out and couldn't find stuff to buy because things look good but I know the burning that will follow so I can't eat it. I am contemplating since ice cream is so bad for you if I would be better off not eating but that is also really bad. I can't even drink ensure anymore to get nutrients. So, yeah satan is trying really hard but he has to go through a might God that has my best interest in mind and let it be for his glory if my life is a battle of spiritual warefare I can only pray that in the end God is glorified and people will see Him through me and it will only make that day when He calls me home that much sweeter and I can only imagine the joy I will feel knowing it is over and God will forever reign. Really, I don't see why satan even tries he knows he won't win and I know he wants to take as many with him as he can to "one up" God or something but seriously dude this is one person you can NEVER one up so you might as well GIVE UP.