July 26, 2017


I recently have been diagnosed with a chronic illness, that I knew I have had since puberty, but recently only has been recognized by the medical community, after I lost vision in my right eye.


I have, since I was 10, begged to be heard, trusted, and believed about my body, how it felt to be in it, and the pain that I would experience.  I would overheat easily, get dizzy, bump into things, get headaches so bad they made me vomit and pass out, be a "space case" unable to concentrate in school, my muscles would spasm and twitch, and my blood pressure would drop suddenly or rise suddenly.  I had my blood sugar checked so many times, looking for diabetes when I was heavier, looking for hypoglycemia when I was thin, still this happens.  Tested, looked over, but never really listened to, I was told I was making it up, I was having anxiety or depression because of my abuse, made fun off, belittled, told to lose weight when I'm heavier, told to not be so dramatic when I'm thinner.  


Several years ago it almost took my life.  I didn't know the correlation, because I didn't know about the illness.  Now empowered with knowledge, looking back I can see how very blessed and lucky I truly am.  I had gone tubing with a bunch of friends, and made sure to hydrate the whole day, knowing that I would dehydrate easily.  Lot's of Gatorade, and swimming in the river later I was tired, my muscles hurt, I was a little nauseous, but I didn't listen to my body.  I joined my friends in drinking.  They had been drinking all day and I thought for sure with all of my hydration I should be ok to have a couple glasses of wine.  I drank 2 glasses of wine, and 2 whiskey and cokes.  Less than I knew I could safely consume, but instead I ended up with alcohol poisoning.  One of my friends tried taking me to the E.R but got turned around, because I lost my vision and could not direct him any further.  By the time he got pulled over I was barely conscious, I remember being pulled from the van vaguely.  I woke once in the ambulance as they were trying to save my life.  Later in the E.R. they had to keep me awake because every time I would fall asleep my heart would stop.  Dying is peaceful, there is nothing on the other side but love. 


I have Idiopathic Intracranial Hypertension.  It is a rare condition and 2-3 in every 100,000 people have it.  There isn't much known about it, and the majority of doctors are not knowledgeable about it, nor are they looking for it, but there are a lot of really good people trying very hard to understand and help.  


My condition means that I have excess spinal fluid, and no one really knows why.  This excess fluid presses on my brain, my spine, and my nerves.  This causes all kinds of not so fun symptoms, that I have to admit have gotten worse within the last few months.  Some of those are related to the medication, some of them not.  


What I am learning from all of this is this:


1) You know your body better than anyone.  Never forget that, and always listen to her and honor her to the very best of your ability.  You know if your in pain, or sick, even when no one believes you.  No it isn't fair, but don't give up on you, and advocating for you.  Ever.


2) Rest, taking a break, making you a priority is a good thing, and if you don't do it, you will eventually be forced to.  I do a lot of nothing lately, even reading can be painful at times, but I remember that rest today means that I might get to enjoy tomorrow.  Listen to your body.


3) I may not be able to do the things that I planned to do to follow my bliss, but there are always avenues or paths that are yet unexplored, and sometimes, we think we know, when really we need to be quiet and listen in order to find the true magic.  I am working on finding a deeper me....


4)  People will always have an opinion about how you do you, with all of their preconceived notions, perception filters, and inability to look at themselves.  Do you anyway.  It really is all that is going to matter anyway.  


I had grand ideas about how I was going to do this and that with this group, and the Great Mother said listen child, there are other things that need your focus right now.  Of course I spit and growled and scratched the ground as I threw my fit, but Mama knows best.  There's no fighting her patient unconditional love anyway.  So I do what I can do as I can, and right now I think I might be growing a new me in here somewhere, stronger and wiser than before.  


EDIT:  I am now in remission!  I have been in remission for several weeks now.  The excessive fluid has gone down, and swelling of my optic nerve is next to nothing.  This has been because of listening to my body and honoring it.  I have changed my diet, began Arvigo massage and undergoing osteopathic adjustments, as well as self care, and self lymph massage.  <3  

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