October has been another month full of uphill battles, tears, bits of victory, and trying to find the joy in things. It has brought the beautiful fall weather and colors, but has also landed me in the hospital two times to get my diseases under control. It has brought me more time with friends and family, but also more tears of wanting to achieve my full capacity.
After being released from CHW, I was able to be home for several days. It was almost two weeks. The ironic thing is that my body appears to crumble after a maximum of two weeks away from being inpatient. It seems to be reliant on constant medical care. Sometimes I feel like a ticking time bomb waiting to go off. Even though I was striving to enjoy being at home, things deteriorated rather rapidly. On Saturday October 8th I was able to enjoy the farmers market with my mom and sister, Claudia Rose. We walked around and got some beautiful flowers and even went to our favorite coffee shop, Colectivo. That morning I could not help but notice the pain I had been having all week in my GJ tube was getting much worse by the moment. I tried to dismiss it and continue on.
Eventually, later that night, we had to call in a UW home health nurse. She assessed my site and said we needed to call CHOW in Milwaukee. We also informed her how my ileostomy was still dumping blood. After describing my oozing, red, and extremely painful tube to the fellow and gastroenterologist on call, they said I needed to come to the Milwaukee ED as soon as possible. So, with immense sadness my mom and I scrambled to pack our bags and headed there. That night they admitted me rather quickly. I did not realize the level of seriousness when I get infections, being that I am immunosupressed and have a line in my body that goes straight to my heart. The following days followed with lots of pain and cleaning of my tube. It was such a painful time, it hurt to have anyone touch it. Cleaning it was something we had to do every hour, and each time we did it it was still as hard as the first time. The nurses were amazing, being so gentle and patient.
The way to get me home and healthy was IV antibiotics every eight hours through my PICC line for two weeks. This meant at six in the morning, two in the afternoon, and 10 at night I would be needing my mom to hook me up to a 30 minute infusion. The infusions were very hard. They caused a horrendous taste in my mouth that made me just want to eat food, which I cannot. Today I celebrated by having my last infusion. I never thought my tube would cause so many issues. I saw it as the least challenging thing I had. I am proud to say I think we have beat the worst parts of this infections and hopefully are in the stages of recovery.
When I was admitted for a week for my GJ tube infection, I was supposed to be back at AFCH in Madison for an IVIG infusion. This Friday, I was admitted to start my three night infusion. The infusion is 16-18 hours each time. It leaves me feeling so sick… My hair is falling out again, my joints ache, my body aches, I am extremely fatigued, I cannot control my body temperature… Its been a struggle for sure. The most amazing part though is that I get to be in my “home” again with my “family”. The staff here at AFCH has been with me since the very beginning. They have given me hugs, held me as I sobbed, given me reassuring words as I get tubes forced down my nose, started IV access right away, simply kept me going. They will forever hold a special place in my heart. I truly do consider them to be my “family”. Being here has been full of love and hugs. P5 is full of fearless individuals that fight for their patients with compassion and love. Nikki, Katie, Allie, Tessa, and SO many more that I do not even have enough room to list. It is so hard to have to go to two hospitals… AFCH will forever be my original home. I will especially be grateful for Dr. O’Connell… I will never forget all of the times I have felt like everything is crashing and he was relentless to help me. He guided me to Dr. Chelimsky and the motility team at CHW … I do not know where I would be without all of the individuals that have helped me.
Thank you to everyone that has visited me! My friends (awesome Syd & Grace), family (Allie and Dylan) , supporters… Thank you to my dear friend Jenna (and Jordan ) for coming to see me today on her special day, happy birthday sweet girl. I am so thankful to all of you for constantly lifting my family and me up.
I currently feel so incredibly ill… But I know I will do whatever I have to do to possibly have any chance of getting better. I am just going to continue smiling. Sometimes smiling is all you can do, and that is more than okay. I believe when all of the fury in the world hits you, you smile. Its simple: smile.
Happy Fall XOXO,