Lupus & ESRD Journey: Recovery & Healing (Pt. 3)

After going through quite an ordeal within a 6 year period dealing with an unexpected LUPUS DIAGNOSIS at a time when I’m preparing to begin my college education as well as a traumatic series of events with an End Stage Renal Disease (Kidney failure) diagnosis within a 2 month period, there was a period of time where I finally got the chance to really process it all. The experience at times was surreal. It’s like I was in my body observing what was going on with me, but at the same time, those hospital stays had me on guard. I did all I could to ensure that I gathered enough scientific information to fully understand what was going on with me. I made sure to ask specialists and nurses to explain to me anything I didn’t understand. Most were kind enough and willing to do so.

Although I did my best to ensure that my physical body was getting the best care it needed considering what it’s gone through, there was one portion of myself I didn’t give as much attention to and that was my emotional state. Besides phone calls to and from those who supported me, and watching cartoons and comedy when I could, I didn’t realize that I had neglected to really emotionally process what I had gone through. I felt like I “didn’t have time” to dwell on feeling sad or angry when certain things came up. Instead, I felt like, “let me get better first and I can worry about that later,”

I did just that. It just happened and I didn’t exactly plan for it the way it did.


I had finally left the hospital after a two month stay which were split over two states (CT and NC). I didn’t realize how weak I was until I got home. I lived on a first floor and there was only one step to get to the door. My legs were so weak I needed to have my arm held in order for me to make that ONE step. I was thinking, ‘WOW, that weak huh?’

I went inside and took a bath in the tub. It was then I first noticed I had lost all definition in my thighs. It hurt to sit on hard surfaces and I was just skinny all over. I had lost so much weight, it was ridiculous. I was probably down to about 90 pounds and I didn’t realize it until that day.

It seemed I had no fat on me and to add insult to injury, I had to be on a strict food regimen to ensure my electrolyte (substances in the blood that help control electrical impulses in the body from one cell to another. For example, potassium for heart muscle movement) levels were regulated as my kidneys were no longer filtering the excess of it out.

That was it. I had to face myself and my body in my own way, without the constant repetitive questions from hospital staff and the poking of needles, bright lights, crappy hospital food and doctors fighting over what to do with me.

Thankfully, with the support of someone very special, I was able to have that emotional support that no one else was giving or able to give. They always encouraged me to stay focused on my goals, to see myself in the state I’d like to be, healthy and strong. They always stopped me when I fell into utilizing negative/defeatist self-talk and was constantly reminded of my talents and gifts. I was encouraged to continue with my comedy therapy and listen to music I love. Before I knew it, I was back dancing in “my new body”. It felt weird without my normal weight but I felt I had to get used to it fast.

Waterworks and Counseling

Image by mohamed Hassan from Pixabay

One day, as I was just relaxing processing all that had happened, someone had asked me if I was ok. I had burst out crying. I guess I had more emotional pain to release then since that time in the hematologist’s (blood doctor) office. They just kept asking questions in which all of my answers were “no” or “not that”. However, the words I wanted to say couldn’t come out.

Eventually I was encouraged to see a therapist for counseling. It was another great decision I made. Even though I thought I was coping fine considering what I went through, my environment and relationship with the individuals there was not conducive to my healing at all and added more unnecessary stress. I didn’t realize how much a therapist was needed until I went and felt even more of the heavy emotions were lifted. It was even more of a wake-up call when the therapist said, “It is a wonder you even made it alive out of that ordeal,”

Healing and Thriving

Image by br_ruy from Pixabay

After constantly going to therapy I was feeling physically and emotionally better and stronger. I went from frequent visits to the occasional visits as I was able to cope better within my environment.

Since then my health has continued to improve. I recall my nephrologist (kidney doctor) telling me I was very hard to treat. Now, today, at the time of this post, I have managed to balance everything out to the best of my ability. I have been able to significantly decrease the amount of medicine I need to control the lupus. I have adopted certain eating, exercise and other complimentary regimens in order to help keep the lupus activity as low as possible while also being able to perfectly balance out my electrolyte levels (potassium, phosphorous, etc. which are needed for the electrical impulses in the body to help it function) better than most dialysis patients. I’ve only briefly taken phosphate binders for a month before I was told to get off of them because my phosphorous was going too low. I don’t experience typical dialysis side-effects. I have VERY LITTLE symptoms when it comes to the various diagnoses I’ve been given in over a decade of this journey.

There was even a time my kidney function had improved significantly and I didn’t need dialysis treatment for about seven months before having to go back on it again. I wish I knew why that happened because no one was able to explain it, not even the doctors (despite being told that kidney function cannot be restored. I have seen it happen in other individuals who have been on dialysis for a certain amount of time).

In reality, when people see me, they see someone very healthy and that’s exactly how I feel.

Now, my doctors are open to listening to me when I say I think this or that should be reduced/adjusted. They check the labs and confirm everything I say is true. They can only follow suit. I also ask questions when I don’t understand something.

As for my nephrologist, he has seen me go through this entire ride all these years and I can only imagine at how he has seen my transformation from death bed to full of life shining more than ever before. From having all those hospital stays to not understanding why my body has been reacting the way it has. I often wonder how often he, or other doctors, has seen such transformations.

I think it all depends on the perspective. He learned his way and I learned mine and at certain times, we’ve come together to solve these puzzles. I think that worked well for me. I can’t say this is so for everyone as you must be willing to do a lot of research and stay on top of it all as well as apply it correctly. It isn’t always easy but it can be done. 😉

It just goes to show that when you are active in learning about your body and how to properly care for it based on your needs and your goals it becomes one of many powerful tools to good health.

Today, I continue to do my best in making sure I stay in good health. It has become a positive habit that seems effortless. It is most beneficial to myself and therefore, I can help others.

I will share all that I have done in order to achieve the good health and stability I have now on this Thrivers Inspire community website in future posts.

Thank You!

Image by annca from Pixabay

I am thankful to ALL who have played their part the best they could in being there by my side and helping me during the most difficult times. You know who you are and I thoroughly love and appreciate you! 🙂

I hope my story has helped you, or someone you know, to understand that with great determination, will-power and some support, you can overcome any hurdle if you truly feel and know you can despite how gloomy it may seem. The human body has an amazing ability to do all it can to try to heal itself. It just needs help every so often.

Please continue to join me and others as we share our stories and tips as Survivors, Thrivers and Healers.

Much Love
*~Netert Aset~*

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