I need answers!

September 11, 2018, I woke up to my house being decorated with Happy Birthday Banners, Vegan Cupcakes & Donuts, beautiful roses, cards, and gifts. It was an amazing morning until 12:10 pm that day.

I left my house around 11 am to take a stool sample to USC. I had been fighting a bad flare and couldn’t get it under control. 2 ½ miles before the exit my heart took off and started pounding with tachycardia (rapid heart rate) and shortness of breath. For the past month, I began carrying a bag of ice. It came to my realization that being exposed to the sun for too long was causing me to have tachycardia.

I constantly reminded myself I was almost at the hospital and it would be a few minutes until I was there. By the time I exited the freeway, I was disoriented and lost. I was trying not to cry because I understood where I was trying to go. I knew that I was in Los Angeles, but I was lost. In a situation like this, when we make a wrong turn, we automatically grab our phones. I wasn’t able to do that.

As soon as I got into the parking lot, I lost my bowels in the car. I saw a security officer approaching my car, and I screamed for help. Shockingly, I was parked in a social worker’s parking spot, and he told me that I needed to move my car. I explained that I was unable to drive and needed medical help. He called someone and they said they were too busy to come and get me. He said, “You’re just two blocks from the ER can’t you just drive yourself?” I replied, “I’m really unstable and don’t feel it’s safe”. He agreed to let me clean myself up and then leave.

I sat in my car for forty-five minutes staring at my phone on the seat of my car. For some reason, I never thought to pick it up. I raced to the ER, drove up to the entrance and parked my car in the middle of the road. I remember being on the phone with my daughter and her screaming “Mom, Mom!” I wasn’t responding. I knew I wanted to speak but I was unable to.

I vividly remember going through metal detectors to get into the ER. My legs were shaking and I felt that I was going to fall over. I asked two other security guards for help and they told me to sit in the chair and wait my turn for the line to go down. I made my way to the counter knowing I didn’t have the energy to wait long. In less than 5 minutes they took me in. Lots of tests were done over the next 18 hours. I Before I knew it, it was 2 a.m. and I was told I was being admitted for Acute Encephalopathy. I had no idea what that was and I didn’t care. I could barely remember what happened that day and it took time to piece it together.

Two days of being at County USC and them inducing the same episode twice, they transferred me to Keck USC where all of my specialists were. I spent the next 8 days there, going through more tests and finding no final conclusion. I had mentioned Mast Cell Activation Syndrome to both hospitals. When I arrived at Keck USC, the doctor agreed that this might be what caused it.

They sent the test to the Mayo Clinic (which still today I am waiting on the results for). They did an Endoscopy and a colonoscopy that they had to abort because the bleeding was horrendous. For ten days, I explained how much I was bleeding, I showed them over and over again. My hemoglobin (red blood cells) was normal, they didn’t think what I was telling them was that serious. Once they started the colonoscopy, they were only able to reach the sigmoid part of the colon because they couldn’t go any further because I was bleeding too much.

I am on medication now, still bleeding but I think I might be turning the corner. Of course, many of you who have Ulcerative Colitis know you think you’re turning a corner and the next day tragedy strikes. I am on a heart monitor for 14 days, and I am taking things one day at a time. I have a home health care system in place with nurse visits and physical therapy. I’ve lost more weight of course but I’m trying to gain some of it back. Most importantly, I am working, which is something that I LOVE.

I was hoping by now I would have all the answers to my tests. Sadly, it looks like it will be a while until I know more. I will keep you all up-to-date as things unfold. I’m going through the process of whatever the doctors require so that I can get to my surgery date to have my colon removed. Yes, I will have a bag, but I will also have my freedom again!

Thanks for all the love and support you’ve shown me during this time. If I didn’t respond to you, I apologize, things were too crazy. Say a prayer for me!

Till next time…XOXO

13 thoughts on “I need answers!”

  1. That’s very mind blowing that none would help you when you needed. Anything like have happened but GOD spares your life. I’m glad you made it to the E.R and you were seen in a timely manner. I know what it’s like to use the restroom on yourself and it’s a good feeling knowing we can’t control it. Hope your results come back normal. Keep pushing through your days and keep praying.

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    1. Mind blowing is exactly how I felt! It baffles me that I could know more than the doctors. That I could find a diagnosis of what’s going on before them. It upsets me for the people who don’t have the medical background that I have. When the doctors speak my husband feels like they are talking another language, which makes me realize that is how most patients are. I’m going to keep fighting for answers because it will help the next person in my shoes! ❤️

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  2. Praying for you Connie! One can not imagine what you are going through. I pray that you get all the answers you need so you may move forward in your next chapter. Much love and prayers to you! 🙏🙏🙏❤️❤️❤️

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  3. You are so strong and courageous! It is a shame that it was so hard for you to get initial help….. hopefully your story will end up in the right hands to change that! Stay strong girl!

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  4. Wow! That would freak me out as well. I always find it interesting that patients seem to know more than doctors, but then again, it’s happening to the patient and not the doctor so we have more incentive to find out what the hell is going on. Keep strong!

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  5. I am so so sorry. As I was reading this I was seeing so many similarities to my friend who has MCAS. It’s a horrible thing to live with. I will keep you in my prayers. You have a large community supporting you. 💚

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  6. I’m so sorry that you are currently dealing with this. I was just recently in the hospital for something similar so I sympathize. I can’t believe that people have no compassion and literally made you drive to the hospital when you were in distress. So happy you made it safely and were seen fairly quickly. 💜

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  7. I’m so sorry you had to still deal with doubt and sceptism when you were scared and confused like that, but so thankful you made it to the ER. It’s hard enough dealing with that on a daily basis, much less in a state like you were in. Kudos for sticking to your guns and powering through it, you have my respect and admiration. xoxox

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