Dialysis: A Comma, Not a Period

By TinaMarie Cerreta

*Reassuring advice and personal reflection on not letting your diagnosis define you or dictate your core identity.


Hello Everyone!

Hope you're doing well or getting there! Today I wanna chat about living my/your best life with an ESRD diagnosis and all the fast changes happening in your life. The adjustment can be daunting and can feel very overwhelming. Sometimes you'll think "if I could just switch places with anyone else....". Other times, it's like you're on a bad vacation, just waiting to get home and hit reset. I'm sure you've got a ton of other feelings and thoughts swirling around, and that's totally normal. I've had them myself.  You'll get through this. It'll just take some time for things (health-wise and emotionally) to get on a new path and for the proverbial dust to settle.

You are the host, not the illness: A diagnosis is merely a detail of your current physical or mental health; it is not a character trait. Receiving a diagnosis can feel like the ground shifting beneath your feet, but remember: your medical condition is just one part of your story, not the whole book. It doesn't erase your passions, your relationships, or your core identity.[1, 2, 3]


But it'll happen, I'm living proof! My dialysis journey, like many others I'm sure, started with a visit to a nephrologist (mine was in 2017), but it wasn't a big surprise. Honestly, I was a disaster waiting to happen. I was super obese (over 340lbs), my diabetes was out of control (because of my weight and diet) and with other co-morbidity issues I was completely in denial about where I was headed.

My nephrologist saw it coming with both my serious health issues and the way I was living. The sad part of my story is that this wasn't the wake-up call that I willingly received. No, I remained in denial for another 5 years. It took changing some doctors and adjusting my medication before I was able to change some of the trajectories of my life. Then kidney failure hit.
Dialysis is just a stepping stone to my future, a pause, if you will. But that doesn't mean my whole life has to be at a complete standstill. I can (and do) still live it to the fullest of my ability...and it gets better as I learn to maneuver through the challenges presented to me.


You might not control the diagnosis, but you do control how you take care of yourself, how you react to treatment, and how you use your time and energy.

I took back my power in many ways (even though I knew I'd eventually have to let the pros do their thing and follow their advice). Doing little things and seeing them differently helped me get my independence back. First, I took an honest look at my situation and realized how lucky I was to be in the right place at the right time. I also accepted that my life was already changing and I had to "jump on that moving train."

I watched how others got ready for treatments. I put together my "go bag." (A special spine-alignment cushion, a blanket, tissues, sugar-free candies, 2 healthy snacks. My center even gave me a duffel bag for everything!) I paid attention to what the PCTs (Patient Care Technicians) were doing and asked questions. After all, it was my body, and I should know what was happening. It felt good to have that insight. Then I did more research online. I followed that up with more questions. The nurses who monitor patients and take our vitals are super important to us. They're always attentive, and like the PCTs, they have the knowledge and skills to teach us what we need to know. After I finished all my research, Don't fall down the "illness research" rabbit hole: It's good to be informed, but constantly obsessing over medical forums or symptoms can make your illness take over your life. Set some limits on when and how you look up medical stuff.


There were 3 main reasons why going to dialysis was a good thing for me. First and foremost, it's saving my life. That's the "real" truth and I always need to keep that in mind. Second, it gets me out of my home 3 times a week where I would normally just hibernate by myself. Third, I've met a bunch of wonderful people (both patients and staff) that I would probably never have met if it weren't for this situation. 

I journal now and find inspirational quotes that I keep in a notebook. I post daily "Lyric Challenges" and "Theater 'Lyric' Challenges" on Facebook. I have a website to promote my "living donor " search. In order to be proactive I started this blog to share my journey with others like myself. I want to be of service to those who might be in my shoes.

So, I'm done talking for now. I wish you all, the most peaceful day possible. Talk to you tomorrow!
Tina


Engage in Fulfilling Activities

• Pursue your passions: Lean into hobbies, work, and activities that make you happy and distract you from the diagnosis.

• These are the activities that truly feed your soul and reinforce who you are at your core.[1, 2, 3, 4, 5]

Connect with Supportive Communities

• Seek out peer communities: Connecting with others who have the same diagnosis can be incredibly validating, but ensure you also engage in communities centered around your hobbies and interests rather than just your health.[1, 2, 3, 4, 5]


Top resources include NKF Peers for mentor matching, the Renal Support Network (RSN) for peer groups, and the American Association of Kidney Patients (AAKP) for advocacy. (for links, see below) Local dialysis social workers are also essential for finding assistance. You should always consult your dialysis social worker because they are knowledgeable and are there to help and support your journey through dialysis treatments. They can do so much more than just emotional support.



My links:
Tina's Microsite (personal)
(Please, please, please share these links with everyone)

  •  Thank you for reading my posts.
The End!


Comments

Post a Comment

Thanks for your comment. I will try and get back to you in a couple of days. If I do notcontact you by then, please be patient. Have a great day!

All Time Popular Posts

Janis Joplin: the evolution of an artist

By TinaMarie Cerreta
Image
Janis Joplin’s sound evolved from chaotic San Francisco psychedelic blues into polished, soulful country-rock . Over three short years, she transitioned from a featured vocalist shrieking against dueling guitars to a confident bandleader fronting tight, R&B-infused groups that highlighted her emotional depth. [ 1 , 2 ] Trace the progression of her musical stylings across her primary studio albums: 1. The Psychedelic Blues Era (1967–1968): Albums: Big Brother & The Holding Company (1967) and Cheap Thrills (1968) The Sound: Raw, feedback-drenched acid rock combined with deep Chicago-style blues. Her early work relied on driving, improvisational jamming, where her vocals acted as another instrument competing with the chaotic, garage-rock styling of the band. Key Tracks: "Down on Me," "Piece of My Heart," and the gut-wrenching cover of "Summertime". [ 1 , 2 , 3 , 4 , 5 ] 2. The Big Band R&B Experiment (1969): Album: I Got Dem Ol' Kozmic ...
Wait There's More! »

TinaMarie's Kidney Transplant Journey

By TinaMarie Cerreta
Image
Hey Everyone! Hey, I'm Tina (TinaMarie), and this is my first time trying to blog. I write in my journal every morning, but this is a whole new ballgame. I'm putting my life (the good and the bad) out there for everyone to see and (hopefully not too harshly) judge. So, here goes nothing! Dialysis is just a part of my life, no way around it. It's a 3.5-hour commitment three times a week that keeps my blood clean and gets rid of extra fluid, giving me another day to live. Even though kidney failure has definitely brought its challenges, it's also led to a lot of growth and change. On one hand, I've had to put some things on hold during treatments, stick to a strict diet, and deal with other health issues like retinopathy, which has messed with my eyesight, and neuropathy, which means I need a walker because of damage to my left foot.  Not being able to drive anymore has been a big adjustment, and I have to rely on others and MAS transportation to get around (let me te...
Wait There's More! »

RESOURCES: Compilation of all posts

By TinaMarie Cerreta
Image
Resources: ( all thus far) Hey Everyone!  I'm so relieved that I've finished this post and published it, at last. I wanted all my resources in one place so that when you guys want to find a link, you don't have to search through all my posts. It's right here at your fingertips to access as much as you'd like. Please comment or email me if you find a bad or incorrect link. Also, if you have any suggestions to add to this list, please educate me. Have a positive and informative weekend. Tina My Personal Links: National Kidney Registry Tina's Microsite Tina's Website Tina's Blog Facebook (my personal page) direct URL Kidney Donor/Recipient Sites: Donor Shield Find a Kidney Choose Donation American Association for Kidney Patients National Kidney Foundation NKF Peers for Mentor Matching RSN The Renal Support Network AAKP American Assoc. Of Kidney Patients Dialysis Groups: K idney.org/peers NephU-NephU Community CKD patient Advocate Dialysis Discussion Uncenso...
Wait There's More! »

Habits: make 'em or break 'em?

By TinaMarie Cerreta
Image
"Its a hard habit to break..." -Chicago Habits are energy-saving mechanisms for your brain, forged through repetition and brain plasticity. It takes anywhere from 18 to 254 days (an average of about 66 days) to build a new habit or break an old one. The exact timeline depends on the complexity of the behavior and the individual. [ 1 , 2 , 3 ] The Neuroscience of Habits: At a biological level, your brain is designed to automate repeated behaviors to free up mental energy. This relies on your brain's amazing ability to change and reorganize its structure, known as neuroplasticity. [ 1 , 2 ] The Basal Ganglia: This part of your brain is the command center for automation. When you perform an action repeatedly, your basal ganglia takes over, allowing you to perform complex tasks with little to no conscious thought. [ 1 ] The Habit Loop: MIT researchers identified a three-part neurological loop: Cue: A trigger that initiates the behavior (e.g., waking up, stress, or seei...
Wait There's More! »

Protein, protein, protein!

By TinaMarie Cerreta
Image
  Hi Everyone! Hope your day's going well so far! Today, we're diving into why hemodialysis patients need to keep their protein levels up for optimal health (along with regular dialysis treatments). A higher protein intake is crucial during hemodialysis to replace lost proteins and amino acids, prevent muscle breakdown, and reduce the risk of fatigue, infection, and hospitalization. Dialysis is a physically demanding process that breaks down cellular protein and strips vital nutrients from your blood, so prioritizing your protein intake is critical for several key reasons .  Protein is crucial for dialysis patients to replenish losses, prevent muscle wasting, maintain albumin(most abundant protein) levels, and improve energy and immunity. Aim for 1.0-1.4 grams of protein per kilogram of body weight daily. [ 1 , 2 , 3 , 4 ] If  you're on hemodialysis, you need more protein than most people because you lose some during filtering). Keeping your protein levels up is super i...
Wait There's More! »

Meeting the Fam: Why Your Brain is a Group Project

By TinaMarie Cerreta
Image
Internal Family Systems(IFS) Therapy Hey everyone!   Ever feel like there's this intense, chaotic tug-of-war happening in your head and you just want it to "settle down!"? Well, that's one of the things IFS teaches you how to do. It's a system where everyone has a core "self" that's naturally empathetic, sympathetic, curious, and calm. The therapy aims to use this core self to understand, heal, and bring harmony to your inner parts (like wounded "exiles" and protective "managers" or crisis intervention "firefighters"). Here's how it all works: .  I nternal Family Systems (IFS) therapy is a type of talk therapy that views your mind as being made up of different "parts," such as an inner critic or a people-pleaser . Rather than trying to get rid of these parts, the goal is to have your core "Self" understand them and work together to heal past emotional wounds. [ 1 , 2 , 3 ]  Developed by psycholog...
Wait There's More! »