Kidneys, Ehlers-Danlos tearing apart, Forget regret, be at peace

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!*

Papers for health emergencies, not a fun task

I needed to do some updates to my emergency paperwork since surgery is being planned for next week out in Baltimore. It had not been altered since my spinal surgery earlier this year. Thankfully the surgery went well and I only had typical EDS complications that delayed healing by a few months. Nothing like the 2005 mess.

Part of today's paperwork is for J, who will be taking care of the kids and Wolfie and running the show. So far I've completed and printed insurance information with permission to treat DS and DD in case of emergency. The advanced directive and medical power of attorney papers are printed.

I only have a few days to peck away at household things, as I always try to leave it clean as possible before I go away for more than a day or two. I've wanted things easier for the people who take care of my kids. I know no doubt I would be told to not worry about it, but there's a wee streak of anxiety that it helps to control. I can't do anything about the trip, the surgery, or the outcome, but these are little things I can do.

I know my paperwork needs updated though. My head knows it. As my DH and I have discussed, I just can't again go through what happened 2 years ago last month. If it happened again and I was able to be brought back, there's still down time from lack of oxygen during CPR, etc. A full recovery would mean that with work, I would return what I'm dealing with now, and we already know those outcomes.

On a bit more positive note, I found my MedCure card. I'm registered for whole body donation. I hope in some way this collection of "weird-ass diseases" (thanks pain man!) may help with research. Our body is just a shell holding the soul until our job here is done, at least in my own opinion. I can't understand not trying to have some good come of it when it's time to go.