Thank you for loving concern, prayers, thoughts, etc. Today was a long day for everybody. My dilation was delayed due to unexpected surgeries that took priority over my procedure. I was under for 2 hours for a 30-45 minute procedure because my wonderful GIs went very at a slower pace. This was my first official “real” dilation in my entire life with EB. They were terrific. It was also my first time being intubated by an anesthesiologist, too. Everything was done with a wonderful tender hand. I feel like a new person. Back story: I had an attempt for dilation in Utah with the best GI doctor in the state, but he felt was not experienced enough in Epidermolysis Bullosa. Furthermore, he felt he would perforate my esophagus. While feeling hopelessness after his decision, I am very thankful he turned me away for future procedures. I’d rather be miserable awaiting that special person to help me than deal with irreversible consequences. His heart was in the right place.
What I am about to say is not a cry for attention or pity: It has been a challenging 6 years, honestly. I have shed many tears. Had many counseling sessions. There were many scary moments within my own head. I know a multitude of us have gone through numerous events in life. Things we never thought we’d go through or live through. Little by little, my social life has been shorten just trying to survive. Thankfully, I have friends’ that have chosen to stick close even when I just wanted to hermit. I have not been the best daughter, friend, stranger, etc.
I waited 3 years for a proper diagnosis from hospitals back at home to explain why my chest was giving me issues (since I had not experienced a very small stricture–I was stumped.) I was just given pills or diagnosed with anxiety. I had anxiety and some panic attacks, but I wanted to know why. I only received 3 hours of sleep per night. Food pooled in my upper chest. I felt an elephant on my chest constantly. I was “hangry” all the time. All the time. I suffered dehydration. My stomach grumbled every hour around the clock. Yes, it has sucked. On top of that, I have had dealt with personal battles from different directions. I would rather not delve into it publicly online just yet, or at all, but I am letting you know, you will preserver.
Sometimes I only post happy shiny posts. Social media really allows us to filter our lives to “perfection”. People get this idea I have money, that I can travel whenever I want. Again, all blessings of dear people who have been beyond generous. My travels have been pleasure, but mostly medical as of late. As of now, I get $17.15 per month for my personal income. It takes me over a year just to save for small selfish purchase for myself. I am not complaining, just being raw. This is my reality. I sometimes forget, too. There’s no such thing as perfection. I simply wish to show positive more than negative; it’s what I hold dear to most often. We deal with a lot negative in our world today. Without some of those flaws, bumps, and cracks, we would not have a new stepping stone/hurdle to climb to a decent outcome and outlook on our strength. [Un]fortunately, discomfort is a necessity to get ahead and teach us something new–rebuild grow, renew. Without a climb, how do we build muscle? Speaking within self. Through such negative or discomforting moments, I usually refrain from spreading it, or become calloused by the discomforts of life. It causes a cycle of a hardened shell. I am not guiltless of this. It happens. I would much rather smile through it than be unhappy.
Stanford Hospital experiences, for the last 2 weeks, all around have been phenomenal. Every doctor, nurse, coordinator, social worker… truly a godsend. They kept telling me how blessed they felt coming across me as a patient, but I felt they were the angels. I saw their sacrifices, not just for their families but their “hospital family” as well. With with my depression and lack of self worth the last several years, I thanked God wondering how I deserved such personable loving people? The true medicine was the laughter we shared, however, just listening to each person’s story was an eye opener leavinng me inspired.
I am going home with a full heart…