A Frank Talk

TW/CW: Discussion of dying, death, and chronic illness, also ableism by medical staff at a hospital. And yes, i do discuss my faith, and belief system (mention of Christianity and Jesus, but i promise it is non-preaching.)
Last June, my world came crashing down. I was hospitalized on June 16th when my then caregiver, K, came and i was almost passed out in my chair, weak, and unable to move much. My lymphedema leg lump that is on my left inner thigh, had become red hot infected. And when i got to the ER, after they did labs on me, they said i had a severe infection in the leg lump—and—end stage stage 5 kidney disease. I was hospitalized for a total of three weeks.
Two days later, i had surgery to implant a chest catheter at the right side of the base of my neck, which goes into my heart, in order to start immediate kidney dialysis.
I’ve been on dialysis ever since, starting in the hospital, and then in center when i got discharged from the hospital July 5th.
At first, i was so devastated—and i actually went through what people go through when a loved one dies, several stages of grief—denial, anger, sadness, depression, etc. I cried alot, and often out of the blue, i would burst into tears. This was so new and terrifying to me. I even called one of my siblings and left them a long message to let them know, i don’t hate them, and why i felt led to tell my story online in 2010—that my intention was not to put them on blast to hurt them, but to make them aware of how the way i was treated had a great profound, sadly, negative affect my life, and to educate others going through the same with their families, and to show others they are not alone.
But right away, i was met with a team of two nephrologists, who talked to me in depth about what i was to expect. Since my labs were stable, i was allowed to still eat mostly normally, just go light on foods with phospherous, potassium, and sodium. They told me they would have my back, and that the kidney center i would be going to for my dialysis would have my back.
I loved going to dialysis right off the bat. Most of the staff have been so supportive of me, and i have even made many friends and allies among them. I even created a cool new imaginary friend out of my dialysis machine, to help me to cope with having to go there for 4 hours three days a week, who is also a real ally, even though she is not real.
Okay, let’s get to the point of this story. Kidney disease IS a killer. It is eventually fatal. The dialysis machine, our second kidney, acts as our kidney, when our kidneys can no longer do their work to cleanse the toxins from our bodies. But with kidney disease, comes the risk of heart attack, cardiac arrest, stroke, infection of the access site, whether chest catheter, fistula, or AV graft, and damage to other internal organs.
Twice now, during dialysis, i have experienced an episode where i get a weird feeling all over, a huge gas bubble forms in my upper abdominal cavity underneath my breasts, my urine turns dark brown, and i cannot eat or drink a thing until the gas bubble and nausea slowly passes. This happened a month ago when they took off way too much fluid for my body to handle, then it happened again yesterday.
Lat night i felt i needed to go to the ER. There, i was treated to first one doctor and nurse, who without asking me first, pulled up my shirt to feel my abdominal area. That is a real invasion of my own body, to get touched without first asking. Doctors and nurses do this all the time, and it is downright disrespectful. Then the first nurse, also without asking me, lifted my legs from the wheelchair foot rests, was rough about it, and i told her to stop and ask me first, and to be gentle with me.
I stayed there for over four hours, only so they could get a urine sample, which by the way, never got tested, then blood was drawn, six vials in all. They also did a complete ultrasound of my entire abdominal area. But the way i felt like i was being unheard by the nurses and the first doctor, i refused to let them admit me. If i need to go back to a hospital, it won’t be this one in Santa Maria, it will be one in San Luis Obispo that has an excellent patient centered reputation. I just didn’t feel like i would be accomodated this time at our hospital…so i had Sam, my caregiver and friend, bring me back home.
I am able to sip small amounts of water now as of this morning. And update: I ate an entire Solo cup of Rice Krispies with 2% lowfat milk, and a sliced apple. my urine looks clear and light-colored again.
The prospect that i could die soon, is once again hitting me hard—and it scares me shitless. While i have never turned my back on my faith and Christianity (Jesus), since i have been woken about so many things, i no longer feel it is respectful or appropriate to those with different beliefs and faiths, and those who aren’t into faith, to proselytize. I never was a Bible thumper, but i did used to post alot of Christian themed memes when i first came onto Facebook, mainly out of guilt that if i didn’t post them i wasn’t a true believer—that i was denying my faith is Jesus. I still profess Jesus as my savior who died for me so i could have eternal life, but i also respect all of you who believe differently, are Jewish, Muslim, Hindu, or no faith in any God at all. I was hurt greatly in so many churches i went to, and i never want to be that kind of person who hurts others. I bring this up, because of the fact that i know i am dying, and there is a huge part of me that fears i may go to hell when i die—because i still cuss like a sailor, i still get pissed off, royally pissed. But ya know what? I now know anger is a valid emotion, and some people do not deserve our forgiveness. I know hell on top of all of the earthly hell i have already been through, would be the unwanted icing on the cake for me.
Sigh—-i don’t know where i am going with this talk. I just know i am real, and i just want to know that i made some kind of a difference in other people’s lives before i do leave this earth. And i want to live on after i die, in a happy place–whether it be Heaven, or in a new earthly life. Knowing that, would help to alleviate much of my fear of dying.
And i would rather die where i feel safe dying. Not with harsh nurses that don’t give two fucks about me, but with the people who i love, who love me. Like my now caregivers, Sam and Iris.
To all of you, my friends here on Facebook, to the ones who are not on my friends list now, but who i still remember with love and gratitude, to the few local friends i have, i thank you all for the love and support you’ve all given to me, for having my back, and for helping to wake me the fuck up about so many things i used to believe in, but don’t anymore because i now see so many truths that i didn’t see before. I have been awakened to the knowledge that i am both bi-sexual and non-binary/queer. I thank you all for enriching my life so much, for the true treasures you all have been and still are to me today.
I love you all, friends. Each and every one of you. To the moon and stars and back, i love you all so very very much. Your light will shine on me forever and ever and ever.
I wish i had enough time left to help bring this nation we live in to a place of true love, peace and well-being for all of its people, including our most vulnerable, elderly and disabled people, People of Color, LGBTQIA, Neuroqueer, Autistic/Disabled, Muslim, Jewish, Black, Latinx, Mexican, Puerto Rican, Asian, everyone. A place where healthcare is a fundamental human right. Where disabled people start being truly accepted, included and accomodated and part of the national conversation. Where gay and transgenders can feel safe walking down the street. Where an elderly grandmother can know she can get her meds, pay her rent, monthly bills, or stay in her home that she still owns, where Muslims and Jewish people can worship without fear of a mass shooter gunning them down. Where there is no more gun culture, period. Where no more Black youth get shot and killed. Where hate is stamped down. I would work for a nation that is no longer thought of as a cruel nation.
In the meantime, i am not dead yet. As long as i still breathe, i will spend my very last spoon defending my friends and my community. I will hold space for all of you. I will do what i can to spread the causes of love, truth, and justice.
Love and peace and light,
Melissa Fields, Still Here
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