This Monday and Wednesday I celebrated making it to all three of my classes in the afternoon. I felt victorious. However, Wednesday night came with a migraine that lasted three days along with adrenal insufficiency. On Thursday I required IV Hydralazine for hypertension following blood pressure readings at rest in the upper 140s/90s-100s. On Friday I missed school, breaking my heart, and meaning that I was falling even more behind than I already was. Friday morning I also passed out twice. The first time involved almost pulling my GJ tube out, pulling tubing out of an IV bag of a med, and due to the IV pole falling the med dumped down the sink drain. The second time I tried to catch myself and ended up shattering a beautiful glass cup after it hit my belly.
Due to passing out so many times I decided to check my blood pressure after being reminded to do so by my dad. It read the 160s/90s for 15 minutes, and the 145s/100s for an hour. I dealt with cravings I usually get with migraines: cheeseburgers and salty fries soaked in ketchup. That night while getting ready to shower I gently removed my GJ tube dressing and the tube dislodged. Then I timidly admit to a storm of tears due to the realization of being admitted this upcoming Monday for IVIG and other overwhelming thoughts.
Why share this? I do not like admitting when things are tough, or showing the sadder moments of this journey. Those are emotions I can barely show even my closest people. I share because these moments are “normal” lately. When doing school I need lots of rest. But I truly share because these struggles are surrounded by the power of my tribe. For example, Wednesday Jenna, a friend, gave me an iced vanilla latte to sip on with joy. That drink is the closest I can get to my beloved cakes. That night my dad helped unload my pharmacy drop off. My mom administered rescue IV Hydrocortisone. Friday Boomer barked and pawed each time I fainted, due to he and I at home alone. He sat next to me amidst the highest blood pressure readings. That night Teresa walked in on me sobbing. Instantly she hugged me, not shying away from my devastated moment which I normally feel ashamed to show. Then my mom trained my dad, Teresa, and ClaudiaRose in reinserting my GJ tube following ClaudiaRose’s jokes to slow my tears. This is a hard task to do but they bravely learned so I have help available 24/7. We set goals to go to Sonic today to get a slushee. They gave me something to look forward to.
This is my tribe! They salvage emotional/physical wounds. They pick up where doctors and nurses can not help anymore. They fill the cracks from science not being advanced enough to help me. They dry tears and stay for the good and the bad. They are my safe haven. I share to thank everyone selflessly working together to be my tribe. It takes a tribe to keep me as sparkly as possible, and I love my tribe.
Thank you for making my life wonderful,