I'm not sure why I bothered to re-post the "Church's and society's bastards" blog post like I did. All of one person from before made contact with me, and that is nice, but at the same time it's not any of the church officials (and it was technically an official who kicked us out). Amazing how some just go about their lives completely oblivious. Or maybe they choose to live this way? I don't know. I couldn't handle it. I need to not have any regrets, be at peace with myself, EVERY. SINGLE. DAY. I have to know Jesus will be there, waiting with an outstretched hand, if today is the day I finally fall into peaceful sleep. Most people my age don't think it happens to them, but I know better, my husband knows better. How many 20-something-year-old husbands have watched as their wives have had a group of people try to bring her back to life? I have to live with this body knowing it's failed me not once before, but twice, and had I not been in a hospital when it happened, I would not be here today. The question always nags in the back of my mind, wondering, what made the doctors not call time one second prior? What made them continue CPR that one more second, that one additional second that brought me back, both times I coded? We live with the reality that Ehlers-Danlos has been tearing apart my joints, bones, my organs, much more than the Chiari ever has though the CM has caused the brain surgeries and subsequent seizure disorder. He understands my lack of fear, if not my frequent outright desire, for the pain and never-ending complications to end.
In the morning I have my 2-week appointment with the nephrologist (kidney doctor). I hope she can do something about this horrendous daily itching that has me wanting to claw my skin off. It's so awful it gets me in tears and I just shake from it. I had no idea itching could be full-body like this, and so incredibly severe. I'm also hoping to find out if the pain up underneath the right side of my rib cage is related to the kidney problems. Hurts to breathe, to the touch, the last few days.
Tomorrow is also my eldest child's birthday. He's turning 11. Where does the time go? Happy birthday baby.
*I am going to be adding a TON of great NEW medical studies to ALL of the categories you see to the right side of my blog over the next few days: Chiari, Ehlers-Danlos, Syringomyelia, Thoracic Outlet Syndrome, etc. Be patient and keep checking back in so you can print them out and take them to your medical, dental, therapy providers, children's school for 504/IEP use, etc!*
