Relationships and Chronic Illness oh how art complex


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When you have done good, and another has benefited, why do you still look, as fools, do for a third thing besides -credit for good works, or a return?- MARCUS AURELIUS

Surgery was supposed to breeze recovery was supposed to be slow and steady, and then the allergic reaction happened. That episode and that day brought me to my knees. My faith in my care team was shaken. Under medical supervision, I started detoxing and tapering some of the medication that I was on for so long. Some were harder than others, and some were a breeze. The second week was when I started to feel the signs of withdrawal, I am not an emotional person, but I would cry at the drop of a hat.

Then I woke up one night screaming in pain. My knees were hot and swollen. We figured this was part of the detox process. We were advised this was not normal and told to head to the hospital when we called the cardiologist and PCP. We/ I was there ALONE 6 hrs only for them to realize that the drug which was safe for me was not available at that hospital Scoot had to sit in the car and listen to everything through speaker phone as I wailed in pain . They offered us a choice to go to a city hospital that is one of our Covid Hubs and or wait to get a scheduled . Self discharged and went home to wait the 5 days at a different hospital . By morning. I had lost the ability to walk because my legs, hand, and knees were swollen .We no choice we headed back to the same hospital thinking because they were aware of this situation they would help us with much fuss since these were potential signs of a blood clot or poor circulation from my heart condition .

All 31 years of my life, I have never been treated in this manner. I understand that we are in a pandemic, and we have to follow the guidelines to keep each other safe. I am a high-risk cardiology /immunocompromised person. But being left in a room for over an hour with no blanket, oxygen, or a monitor to check my vitals is borderline malpractice. I remember getting out of the bed, falling on those same swollen knees, and crawling to open the door to that leads to the nurse/doctor station. The perks of being chronically ill and advocating for myself, You have a general idea of how your care plan needs to be handled. I know because I am a complex patient with chronic pain and a MAST Cell Syndrome, which makes treating me with certain medications is rather difficult.

But when I open the door, door if the triage room and I unleashed advocacy hell I wanted everyone’s names working that shift and the number to the hospital’s advocacy team. The Dr. tried to yell something from across the room about cardiology, and I snapped back, what would you know about my cardiology history if I am not hooked up to any monitor. I could have had a heart attack in there, and you would not even know if you cannot help me. I would be delighted to call 911 and get a transfer to another facility. I was angry. I was shaken, traumatized even as a patient advocate I have my lows and this was my low , and advocating for myself while in pain was difficult . The doctors tried to scramble but it was to help me but it was too lat We again decided on self-discharge. If something were going to happen, then I would rather be home.

The next morning my body had doubled in size and turned purple, a sign either I was losing circulation to my extremities or had a clot somewhere. We decided to try our luck at our scheduled hospital and From the time we checked in to the timer through the Er . The ICU staff had be already simultaneously settled a bed in ICCU for me , it took less that 35 mins from Er to the Critical Unit. Unfortunately I had to go through this process alone because COVID voided my husband or family to be there with me . I was in critical hypertensive crisis BP 190 /111 I stopped talking , my vision temporary vanished and I had one of the worst head aches of my life worse than a my migraine . The nurses didn’t want to scare me but essentially I was having a mini heart attack in my sleep. A crash cart has was brought out with the intubation machine and I said anything else except the tube. I begged not to be intubated if you know me, I do not beg.I promised GOD I would stop eating chipotle or being sarcastic, I would make it to confession more than once a month anything that would keep me from being intubated . I begged for my husband, for my mom , my dad my friend some I knew to walk In that room but no one one came be in the room for Me. The doctor was throwing words around like stent or pace maker.

Well okay then 😰

I understand I am an adult, and I should be able to make these decisions independently, but when you are the patient, in pain, and trying to be an advocate for yourself, things get messed up I am only human . I am not even sure what I signed last night. All I know are two things stood out for me I crawled out of the room to save/fight for my life, and I begging for a 4th intubation my emotional and mental state would not bro able to handle that .

Life is tough, and life can definitely kick you down the hill when things are bad, but I never thought I would in this dark moment. I never thought I would look around and find ” no one” to lean on in my friends . I had more check-ins from my co-workers than friends I’ve known for over 10-12 years. I had nurses who checked in on me more than some family members. My priest drove 45 mins the opposite direction to pray over my husband and me. I learned a lesson at the end of the day, everyone moves on with their lives, and it is okay.

I have always naively believed when you shout up consistently for someone they do the same for you. So I held a strangers hand through a procedure and cried hysterically into her scrubs m .

I talked To my older siblings and the did not pull any punches your Life is your’s it is what you you make it and no one will show up for any better than yourself. Live your own life, be selfish, don’t support those who don’t support your life or your dream be your own cheerleader, and when it gets tough, crawl to that door advocate for yourself to save YOUR OWN LIFE!

2 thoughts on “Relationships and Chronic Illness oh how art complex

  1. there is one thing i admire about you. the fighting spirit keep it burning and yes remember when it comes to life you can only be selfish nothing else matters but you.

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