So grateful for each and every one of you!

Apr 21, 2024

This is Carla, typing my first update.

First and foremost, THANK YOU TO ALL OF YOU who have donated!! I’m humbled and amazed, by all of the support, and especially for the incredible Cathy Luebke, who not only set this up, she used to RUN THE DEPARTMENT of some of the TOP NEUROSURGEONS at Goodman Campbell, who I’ve since learned are one of the top teams in the country for brain tumors and very hard to get into. They happened to be on call that weekend (??!)

The more I learn the details of exactly what happened, as well as what this tumor was doing over the past year or two, how precarious my life actually was, how many times I might have died with that growth in my head, and how many times I faced death if I hadn’t found it when I did, insisting on a CT scan even though I, too, believed they wouldn’t find anything, it would have kept growing and bc it was so large already, I would have been dead or completely incapacitated within 1-2 months.

Not only with the days leading up to surgery, the surgery itself, but even post surgery. The first few days in the hospital or amazing, and I did remarkably well afterwards. So much so they decided to discharge me. Because I worked at that exact hospital, where I was also born and my triplets were born, where I also did leadership development training for a year, I knew they did everything wrong the day of discharge.

The same hospital, that had just miraculously saved my life, failed me on the day of discharge. They discharged me to myself around lunchtime. No one was there to pick me up, my entire family was already very busy with their own surgeries, and work, and getting ready for the Easter weekend. No one was prepared or available to come pick me up, because I did get discharged earlier than expected, and friends and family were busy with their own lives and families. It truly was a crazy week for my family, because I was only 1 of 4 different medical emergencies in three days.

My one son was working, and my other son had driven all the way to Iowa and back to pick up my daughter so she could be here. He did this drive in one day, which I’ve done before, and it is exhausting.

He was supposed to pick up my meds, but he fell asleep. They had called them into Plainfield instead of nearby, but since my kids are out there, I thought that would be OK. My son was supposed to get them at 4 PM and they were ready, but he fell asleep.

I wasn’t able to get food since I was discharged, so after seven hours, I had missed both lunch and dinner. My daughter called me at 6:45 PM and I realized that the pharmacy was closing in 15 minutes. My son had fallen sleep, and I totally understood why. But the pharmacy was 11 minutes away, and he had never been there, because he had just moved back home with me. The hospital pharmacy had already closed at 5 pm, and though I’d had amazing nurses until that point, she was older and very brusque and was also panicking about the meds I needed that night (on the one time she came back in to check on me, not asking if I needed anything - like food, a cart for my stuff, a wheelchair, etc.

The hospital did not provide a cart or a wheelchair when my sister, who had driven with her family all day from Milwaukee, even though she was supposed to be at home recovering from her own surgery, was finally the one who pick me up from the hospital.

For the next four days, once I arrived home at my mom’s, the first four days which my doctors had told me were critical and I wasn’t out of the woods yet, my family was dealing with their own crises, with their own or pets’ medical emergencies, with their own overwhelm and unprocessed grief from my father‘s death, where I was now in his recliner and triggering my still grieving family. My kids were taking care of each other and another injured pet, and assumed that I was being taken care of.

All of this to say only because of the eating program I’ve been on for a year and a half to lose 100 pounds did I even know the nutrition I needed when I did get meals.

My meds were pretty complicated, and some of them were missed. I could feel my brain and body deteriorating. And none of us really understood what to expect about how my brain would be reacting to the agitation from the surgery as well as being on steroids.

The huge Blessing in all of this is that I did survive, and when my brain broke down and deteriorated so much, it then expanded into a manic state (which was not fun for any of us because I had supersonic senses and hearing with no filter and no ability to not react to the energy in the room. I could even sense if there was sugar in the room with me, since I hadn’t been eating sugar while in my program and my body was already so in tune with how I felt.

And that happening also finally unlocked my own brain, which I’ve been studying my whole life and not fully understanding, helping other people find their purpose. Searching for my own, and feeling like an imposter most of the time, I finally understood why. And what my purposes. And what I have been doing my whole life, and all of the relationship dynamics that I could never explain before within my own life and family. I saw the reason for everything, the good, and the bad that I have gone through, and how every single thing is connected. It was amazing, and I was desperately trying to document it, which only made my family suspect even more that I was not myself.

I still have some pretty big needs now to recover from all of that, I have to eat a lot more nutrients, I needed supplements that are quite expensive to be able to restore my body to health, and even make sure that all the water and liquids I was drinking, actually absorbed into my body, which wasn’t happening, because my body was so low on minerals and nutrition.

I know this bc I saw a specialist who I’ve gone to for years, who confirmed that many of my major systems were very shut down.

My family has been doing their best, but because I wrote the program called care of the caregiver, especially when you’re so uninformed about what to expect, it has been challenging to say the least. But I’ve gotten the food and comfortable pillows and the things I was needing, much of which I bought from this fundraiser. There are a lot of extra expenses in gas and driving for all of the people who need to help me, including my kids, driving back-and-forth from Plainfield

There have been many extra bills, as well as my regular bills, and because I am self-employed I’m not able to work

I soooooo appreciate everyone who so generously donated. Even though it still shows the amount as if it’s there, it’s been used, and I am not sure how I will get through this next part.

If you have already donated, thank you sooooo much, please share this with friends and family and people you know, and ask if people can even spare $5 - every bit helps and makes a difference!

If you haven’t donated yet, and meant to, I totally get it. It was Easter week and Spring break week and everyone is so busy taking care of their own humans and busy lives.

Please continue to share this fundraiser, I know a lot of you were in some big groups that I was a part of. And, of course, please continue to send your prayers and your love! I know those help the most, and is part of what has kept me alive.

(RIP MANDISA! She died this week at only 47 years old! 💔

❤️🧠❤️‍🩹

Sending my LOVE to ALL of you!
Carla

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