Sunday, October 27, 2013

(A clever title of which I cannot produce currently)

Much has happened since I last posted. I started the month of October determined to rid myself of my online/social media presence. I felt like it had begun to turn into an obsession. I suspended my Facebook account, deciding to return in November. Now, when someones human interactions are mostly online, that wasn't the wisest decision. I did succeed for the week though! I am not sure if it was systematic rage or just the pure frustration with a lack of real-in-person interaction. If you are familiar with the 5 languages of love, learning that my top 2 are tied, touch and quality time, will help explain my loneliness. I have many close friends that our only communication is Facebook. While I love them and cherish the time we "spend" together, I became increasingly frustrated at them for not being right next to be. I know it isn't rational. Thankfully, I stepped away for a bit in order to reset my brain before I did any damage to those relationships. On that note, if you live near me and want to hang out, please contact me. Do understand though that I will need you to show up exactly when you say. I am not well enough to handle flakiness after spending all day or week prepping my body to participate in a social activity. 

Well, during the time I was to be resetting, I started to have severe organ troubles. I was up to the full treatment on oral drugs, but it was shutting my system down. I could no longer eat. Even when I was hungry, my infected brain believed the food was rotten and wouldn't let me keep it down. I couldn't drink water. Like an infant gagging on new formula, I just couldn't get it in. So my upkeep of supplements like the probiotics (100 billion count) and sacchromyces boulardii (good yeast) and other things to boost my GI function and immune system simply failed to stay in. I was starving to death. I called my LLMD, he yanked me off of the antibiotics and said I was on track to renal failure. So I spend 4 or 5 nights in the ER simply hoping for an IV of fluids. Sometimes the doctors complied, others though told me I wasn't dehydrated and shouldn't use my wheelchair if I could walk no matter how high my fall risk, explaining that I have fibromyalgia and the worst thing for it is not walking. I wanted to smack him. What on earth do they treat in med school?! I think I would much rather have some muscle atrophy then continue to fall and break my bones. I told him I only use it when I know I will fall.... many bad words and anger to him. I am so sick of rude and ignorant doctors. 

On that note, when I can walk, I do. Sometimes 4 miles a day. I can't do it everyday. I cannot rely on my body to be consistent in that manner. 

Back to the bodily problems. I have lost so much weight, I hardly fit into my clothes. They slide right off. I am doing everything I can to stay in the triple digit range, but the last time I weighed in at 100 lbs. 

This weekend I was lucky enough to go to the James Area Fall Advance for Mary Kay. One of the gals in my unit had to miss, so I took her spot. However, by the time I left yesterday, my decline was suddenly no longer hiding in that secret spot I had stuffed it away within the depths of my awareness. I could hardly sit up for the afternoon classes. Having attended many of these events, I know that typically, they pump me up beyond the capabilities of anything else in my world. They are full of stories and lessons of how to be a better business operator, a happier, more emotionally healthy human being, and how to elevate oneself above the 'life suckers'. (You know the people who suck the energy out of you and have no ambition to change or grow themselves, but want to complain about the status quo.) 

So once again, I crossed the line of what my body could handle. I just so wanted to get to experiance all of it. I had to call my director (one of my best friends) and tell her I wouldn't make it to the rest of Advance that takes place today and that I am trying to learn where the line is and not cross it. Well, apparently, she watched me cross it yesterday and fully expected me to not come today. I am not sure how to process this. If she can see my line, why can't I? Why must I hit the wall before I realize, the line is far behind me? 

Now, I sit (well to be honest, it really isn't quite sitting) in bed with my laptop, while wishing desperately that I can get up and go to the rest of Advance. I have been told countless times, "mind over matter'' or something similar. If you know someone this sick, don't say that to them. I truly want nothing more than to go back to work full time. But at this point in my illness, it would actually kill me. My full time job is to obtain money for medication, and trick my body into eating and taking said meds, and orchestrating the progression of treatment, as in what specialist and when and how they will all work together and how on Earth I will be able to get a picc line AND convince my insurance to cover the IV antibiotics so my GI track won't die as I am trying with all my energy to save my brain (the pay sucks by the way; I don't recommend it.)

Right now. Right now I should be putting on makeup and leaving for the days activities. Self consultation is hard. There is only one thing I want today. Shoot, I would give up my football Sunday for it. I gave up my soccer Saturday for it yesterday.  (You should know that as a kid, my time was pretty equally split between sports, reading, and making art.) It is beyond any English term I know that describes difficultly to not partake in the essence of my soul. I am a hard worker. Maybe too hard. My LLMD was amazed I graduated with my BA with a good GPA and didn't drop dead right away. My hardness, my will to push one more step, will I believe save my life, but only if I learn which direction to step. I have to accept that "normal' work may not occur for a while, but my push, my hardness and fight must be in treatment. I would trade almost anything to not have to suffer though the toughness that is treatment. If you feel like helping me out and making me feel as though I have done some work, head over to my personal website place an order, all the profit will go to doctors or meds. 

PS I have no clue if any of this post makes logical sense. I am having some swelling in my brain, specifically my brain stem and the right hemisphere. This is making it very very hard to see the words I type. Please be understanding of spelling, and grammar errors as well as what I am guess is a very frayed thread of though through this update.  

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