I’m so in love with life… So in love with life. After the most emotional and ill three weeks, I am constantly thinking about how much I love this life.
Three weeks ago began one of the more scary periods for my family, friends, and myself. We were working on a Prednisone taper and had gone down from 6 mg to 4 mg. This taper has been going on for a few months now and we were taking it slowly. I was thrilled about it, as I despise the side effects of this medication. A bit over three weeks ago I took a turn for the worst. While I had my family hinting about it on social media, the truth was I was incredibly sick. I could not think at all, I was shuffling when I walked, I was fatigued, I was constantly sleeping, I had a constant migraine, I could not be around light, I was nauseous, I was getting incredibly swollen all over my body and face, I was disorientated, I was passing out… It was a nightmare. Being so medically complex we had no idea what was going on. I could not leave the house at all. The only time I left was when my mom helped me get ready for my dad’s retirement ceremony. I was so swollen we had to go out and find a whole new wardrobe the day before. I kept trying to turn in essays and assignments for my two online AP classes and was getting them booted back because I was forgetting to write the whole essay. I had to stop all tutoring sessions and stop anything social. The post I made on my blog was pre-written, and if I had not done that I would have not been able to write anything at all. My life quickly was slipping away and we had no idea.
It got to the point that my mom told me she was checking on me at night to make sure I was still breathing… That was when we called my Complex Care team at AFCH. The amazing Carisa Baker, a nurse practitioner at Complex Care, helped my mom so much. She told my mom to take me straight to the ED. She helped us navigate explaining everything to the ED doctors, and I was immediately admitted. Not only was I so sick, but my ileostomy was also bleeding for the fifth time. The hospitalist attending was Dr. Fliegel. He immediately recognized I was in adrenal insufficiency and heading towards adrenal crisis. He gave me a stress dose of steroids and I had my mind back. The adrenal glands are so important… When you are on steroids for a long time they shut down and then your body becomes ill. We continued to give more stress doses and I was on around the clock pain medications and relaxants to try and make my migraine go away. Soon my GI tract began to take a turn as well. My life-changing ileostomy stopped working and continued to bleed. It was at that point they decided I needed to be direct admitted to CHOW in Milwaukee after three days at AFCH.
Once I was re-admitted to CHOW I was able to see my GI doctor, Dr. Gisela Chelimsky. She came in with one of my favorite GI fellows (Dr. Prasanna) and my surgeon Dr. Arca. We discussed everything that had been going on. The following day, they decided to perform investigative surgeries to see if there was anything mechanical going on inside of me.
On Friday, November 11th I underwent the surgical procedures of an endoscopy, ileoscopy, and biopsies. That morning my pain was so severe. I was literally grasping onto the rail of the hospital bed sobbing. My nurse that day, Mallory, was nothing short of amazing in caring for me. I was given a dose of morphine and was finally able to breathe without crying before my operation. For the first time I was crying before being put to sleep. I was so terrified that my motility in my small intestine was getting worse. Dr. Chelimsky was the sweetest soul and held my hand, soothingly rubbing it, until I was off to sleep and she began her work along with my other surgeon, Dr. Lal. When I woke up I had a horribly adverse reaction to the new anesthetic. I was hysterical and anxious the entire day. It was so severe I had to be given a relaxant to calm down. My amazing aunt and mom sat by my side the whole day to try and keep me calm. We did not discover what was wrong. I had sores and bleeding around my GJ tube, and that combined with my bleeding disorder was the thought of why I was bleeding. All we knew about my ileostomy was that it was just having a period of not working. That scared me.
The next week, the GI attending switched over to Dr. Miranda. I have had the pleasure of having Dr. Miranda before. I am always very thankful when he is on service. He is not only a great doctor, but he also listens. Sometimes listening is the most valuable trait a doctor can have! From Dr. Chelimsky and my mom’s suggestions, we tried feeds through my J tube again. My J tube goes past my stomach and ends in my small intestine. We trialed them with lots of medications, including Octreotide. I became so incredibly sick. My abdomen was incredibly distended and hard. I was laid out by nausea. My blood pressures were very low and too hypotensive. The hardest part was seeing the feeds back up and drain out of my G tube that is in my stomach. The one segment of my small intestine that works properly goes backwards and empties into my stomach. After two days of unbearable dizziness, fatigue, nausea, and pain we stopped trialing feeds.
The rest of my stay there was all focused on letting my tired body return to its baseline. During that time period I could not help but develop lots of anxiety. This has been one of the hardest trials I have ever faced. I felt anxious to be stuck in the hospital and not home with my family. With the help of my mom and nurses I was able to stay calm throughout the rest of the stay. The nurses at CHW have become my little family away from Madison: Abbie, Mallory, Virginia, Rachel, Carly, and so many more. They have been so patient with me and so caring. Having my friends constantly texting me kept me sane also.
An unexpected wonderful opportunity at the hospital presented itself two days ago. The high school set up a camera and I was able to attend Spanish class! It was wonderful to see kids at school again and to feel a part of the class.
After a long 11 days in both hospitals, I was finally discharged. I finished my day with autonomic testing with the amazing Dr. Tom Chelimsky (part of the superduo Chelimskys) Once we finished we were able to bust out! I have not felt so happy to leave the hospital in a long time. I felt all of the happy happy tears running down my face. It was the greatest gift I could have received.
I will never be able to say how thankful I am to Dr. Fliegel. He saved my life. We did not know I was nearing an adrenal crisis. I was so sick when I was admitted to AFCH I did not recognize anyone. Not even my nurse Nikki, and I adore my primary nurse. And I did not even recognize nurse Allie.
I do not remember much of the past three weeks. I only remember small glimpses of things. I barely remember anything at AFCH. I do not even remember my dad’s work ceremony. The things I remember are what I am told about in great detail.
Right before I got very sick I was in the car with my mom. My dog, Boomer, always loves my momma. He never leaves her side. As we were driving he all of the sudden looked at me and crawled across the car from my mom’s lap into mine and would not leave. We both sat there in shock. He never leaves my mom’s lap. Ever. I knew he knew something was about to happen. Each time before I end up in the hospital he sits by me. Before I went on TPN he would sit outside of my room watching me with immense sadness. He always gives me signs before something happens. I did not know what was to come when he crawled to me, but I knew it was something big.
I think the universe is one big tapestry with many strands woven together, intertwining and weaving amongst everyone we come in contact with. Once we were admitted at CHW, my surgeon Dr. Arca told me that earlier that week she and Dr. Lal were in surgery together. Out of the blue he asked how I was doing. Turns out that was the day I was admitted to AFCH. One of my nurses, Anastasia, saw me in the hospital and said how she never remembers her dreams but remembers how my face was in them lately. Another nurse, Carly, told me she was in Dallas with a friend. Her friend asked her what she was thinking and she said she was thinking about me. These little signs all correlate together. It was as if everyone sensed something was wrong, and like that I was admitted and people worked to help me.
I am so unbelievably thankful. I am so thankful to be alive. I love life so much. I love every moment of it. Being able to come home and be with my family has felt like a miracle. I technically have not seen any of them for a month. And for all that I have endured in these past three months I feel so much joy. At any moment I feel like I can cry from sheer joy. God has truly blessed me by deciding I deserve more time here with the people I love.
To everyone that has worked so hard to help me these past three weeks:
Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. You all gave me the greatest gift I could have ever been given, life. Thank you for saving me, thank you. Each step I take I think of all of you. Each breath I now take is because of all of you. I am alive, and I have never felt more thankful for that. You all are the hidden heroes in this world. I thank you and applaud all of you. Keep on doing what you are doing… Even if you do not know it, you are changing the lives of thousands each second you help others. Thank you for giving me my life back.
I love you all. I am so thankful to be here and be able to write this. I made it.
Also please send healing thoughts to my sweet sister, Claudia Rose. She was dealing with horrid migraines all last week and now has a bad virus and ended up in the ED for much needed fluids. Please keep her in mind so she can heal up soon. Xoxo.