The first post.
Well, lets start off with the mundane.
I took a nap on the couch with my legs elevated, when I woke up I did the whole eating/taking meds/getting ready for actual bed rigamarole. I tried to sleep. I did, several times. Even did the whole heated eye mask that I’m supposed to do every day... but still I couldn’t sleep.
I've been working through my strategies in order to keep myself together. Those are keys for surviving the overwhelming emotional toll. I'm not going to lie, I sort of put off looking through my nephrologists most recent findings. It has been that sinking feeling that the monster is standing right behind you, breathing down your neck. I am such an avid believer in free and open information, so I went against my own nature to just know the specifics. Turning from the motions of surviving to meet the monster as my brain kept throwing information that I could DO something with. Building this website is me processing the information as I go. I read the detailed information about my condition and I'm f*cking terrified.
I've been manically writing and putting this together since 11:30pm 04.05.2019 sporadically off and on all night until about 6am 04.6.2019 when I just gave up trying to sleep. The time, as I write this and work through the site is 6pm with one break to go and grab a kiddo from a friends hangout.
I feel so driven to get this site up and out. I feel as my therapist was correct. I did pad the situation regarding what is happening to me for those around me. I do it subconsciously not only to take care of others but, as an emotional protection mechanism. I do not do well in overly emotional situations. I need time and space to process, analyze and make sure that my emotions are warranted as well as based on the situation. I am a very passionate person thus when I am emotional it consumes me. My way of coping may make it harder for me to explain to my boys and those I care about just how serious this is.
Communication is key and especially in times such as these. I am of the opinion that they should be aware but the fallout, such as my eldest son who to me is an emotional being, is overly daunting. I want them aware of not only the sheer relief of just how close I came to dying but of how there has already be some significant progress. As though, if I can make it through the truth and wealth of information my little website will hold for me (with my mapped out strategies) that I'll be able to hold myself together. I need to get the base of the site up. My grand plan is to share the link and hope that since there will be so much other information that the emotional times statements will be overlooked. Weak game, I know, but I'm only human. How to phrase what my outcome would have been if serious steroid infusions happened when they did... now there's the trick question.
THE POSITIVE : My kidney damage has presently been halted and rose up from 25% to 36% functionality.
THE NEGATIVE : I haven't slept and am working like mad before I feel like I'll emotionally crack. Fun times.
#Glomerulonephritis #CrescenticGlomerulonephritis #RapidlyProgressiveGlomerulonephritis #RapidlyProgressiveNephriticSyndromewithDiffuseCrescenticGlomerulonephritis #RenalFailure #AbsoluteAnemia #NephritisAutoimmuneDisease #NotLupusNephritis #IfItsNotLupusWhatIsIt #NotLupusNephritis