‘I begged, ‘Please cut my leg off!’ I was drowning in pain while doctors fought over my body like a science experiment.’: Mom becomes amputee after 10-year battle, ‘Love is everything’

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“As a young teen, I was nothing but happy with tons of friends, lots of activities, and a great family but in the in-between times, the times where I was alone, my body hurt. It hurt all over. I complained to my mom, who took me to doctor after doctor, all telling me it was psychological and I had depression and anxiety. The doctors questioning me made me question myself. It hurt to not be believed at such a young age by medical professionals.

But it didn’t take long to get diagnosed with endometriosis in my late teens after having my period for a while. Once I was given this diagnosis, it was easy for doctors to blame all my pain on that when, in the bottom of my heart, I knew it was something else. They continued to blame the source of my severe body aches and fatigue on my endometriosis. I finished high school and college with my health on the back burner. I was pretty much determined to be ‘normal’ and happy and in a lot of ways, I achieved my goal.

Courtesy of Nicole Nakahara

I got married after college to a physically and emotionally abusive man (that’s a whole other article) who became the father of my beautiful daughter, Sophia. The birth of her was easy but the days after were not. I got sicker and sicker living with high fevers, body aches, chills, fatigue, and so much more. Finally, a year after my daughter was born, I was diagnosed with SLE, systemic lupus erythematous.

Courtesy of Nicole Nakahara

Fast forward 3 years and I was loving my career, loving being a mom, and hiding that I was being abused and sick. I got a chance to go on a ski trip with a client at work and it seemed at this point in my life, I would really do anything to get away from my husband for a full day/night. I had an accident on the slopes, which resulted in a tibia fibula fracture. I was transported to Oregon Health Sciences University where I got the first of many surgeries. Over the course of the next 10 years, I would undergo 11 surgeries to try and save my right leg and restore it to full function.

Courtesy of Nicole Nakahara

All the years battling with healing my leg took a toll on my body and immune system and so the old style of medications were just not cutting it anymore in my battle against lupus. My own immune system was fighting me and it systematically started to attack almost every single organ in my body. The doctors tried to combat this rapid downgrade with aggressive steroids, only to leave my bones frailer and my immune system weaker and weaker. It was like the cycle of hell. They treated me with steroids to save my kidney function, but then my right leg fractures never healed while osteoporosis got worse and worse in my body.

On top of that, the steroids also caused me to be immunosuppressed and so I battled four bone infections in a 10-year span that also did not help the healing of bones. The pain was like one of a sharp stabbing knife cutting my leg open over and over reminding me if I stopped the steroids, I might die of kidney failure or heart failure.

Courtesy of Nicole Nakahara

It was too much for a young mom to handle, but I kept my faith as strong as I was throughout this battle, mostly for my little girl. I desperately wanted to give her a normal toddler life. Isn’t that what every mom wants for their child? I tried to live my life like the Proverbs woman lived: ‘Strength and dignity are her clothing, and she smiles at the future.’ (Proverbs 31:25)

This single line is what got me through to the next step as I navigated the disaster that was/is my body.

I asked —no, begged— multiple times, over the years to get my leg cut off and the doctors always had another plan, another new thing to save my leg. I felt like I was drowning in pain, emotionally and physically while doctors fought over who would do the next big thing to figure out my body, what seemed like a science experiment to them. Leaving my marriage was the first step towards emotional and physical freedom I couldn’t understand at the time.

Courtesy of Nicole Nakahara

Now on my own, a single mom I felt rejuvenated to fight for my health. With the help of my amazing family and beyond generous friends, I was able to begin to rebuild a new life with goals for a better future. My career was going well and I was fortunate enough to meet my angel on earth, my soul mate, and the love of my life, my current husband, Kenneth. He took me in like family and never questioned all the health ailments and disabilities I was dealing with. In fact, he took charge and since then has become a solid foundation I never knew Sophia and I needed. It was him who suggested I look beyond the scope of the doctors in the Pacific Northwest, as we had clearly not been given the help and answers we needed to move forward with our lives.

Courtesy of Nicole Nakahara

In 2013, Kenneth married me and my daughter, Sophia. Shortly after Kenny and I began traveling every month to Los Angeles to get my care. This institution was proven to help me out with my ever-growing orthopedic issues, my gastrointestinal disease, my growing neurological issues as well as my underlying condition, lupus.

Courtesy of Nicole Nakahara

I spent 2 years flying back and forth from Portland to Los Angeles to get the treatments I needed to keep going. In April of 2019, I flew from Portland to LAX for my normal treatments and was immediately hospitalized for malnutrition, adrenal insufficiency among many other things. During this admission, I was given a feeding tube so my body could get the nutrients it needed. My adrenal issues were treated among many other issues related to lupus. I will never forget the doctor’s words, ‘If you returned to Oregon, you will likely be in critical condition and your life will be in jeopardy.’

Courtesy of Nicole Nakahara

It was at that moment Kenny, Sophia, and I decided to stay in Southern California. We never went back to Oregon. It was so weird, we didn’t even get to say goodbye to the friends we had spent the last 10 years with but this still seemed like the right decision. I want so badly to be here for Sophia’s high school prom, graduation, marriage, and all the other milestones. My doctors began to tirelessly work to get my health under control and this was no small feat. I was hit with a sea of tests, new treatments, and new specialists. At this time, I was still dealing with my leg not healing and the pain being absolutely horrific.

Courtesy of Nicole Nakahara

People ask me all the time how I stay positive through all I have faced and the answer is quite simple: Finding Gratitude and Joy. Counting my blessings because there are so many other than being sick. I have a roof over my head. A husband who loves me no matter what, a perfect daughter, a wild beagle, and I could go on and on and on. I am also a fine artist and my art takes me to a whimsical place where I can just not be sick for a while. It truly is my passion and I am so grateful for it. The truth is I have more to be grateful for than to be upset at even with all I have endured. This gratitude makes me happy but where I find my joy is in the love of Jesus Christ. This is a joy that far surpasses anything else I can explain that comes from this world. Jesus is my light and I think that is why going into this next season of life didn’t seem so devastating.

Courtesy of Nicole Nakahara
Courtesy of Nicole Nakahara

When Covid hit, I was in the hospital for another one of my hospital visits and I just started to think more and more about my leg and how much it was truly bringing me down on top of all my other ailments. Being in pain for 10 years, I felt like I was going crazy and I really wanted to reconsider the option of amputation since nothing else was working and I was completely unable to use the leg at all. The pain was as if someone had lit my whole leg on fire while also stabbing it. I was on the edge. It was horrific and I wouldn’t put this on my worst enemy. I prayed about it and I talked to my family and friends. I talked to my team of doctors and we all decided that it was time to get rid of the leg that was rotting away at me physically and mentally.

On November 18, 2020, I got my leg chopped off! I say like that because, for me, this was an exciting, although terrifying, day. Here I am now, learning to use a prosthetic when I feel good but learning to listen to my body and use my badass power wheelchair on the days my energy isn’t at its best. Both have given me tremendous freedom I will forever be grateful for.

Courtesy of Nicole Nakahara

I am certainly not perfect and I have bad days where I cry and wallow, but most days I try to stay fulfilled with joy and gratitude for the amazing daughter, husband, family, and friends in my life. These people have become my village, my tribe — we may be small but together we are so strong. These people have rallied around me for years helping me to get everything I need to start living a fulfilled life as a disabled and chronically ill mother and wife.

Courtesy of Nicole Nakahara

I fight every day for my life. And believe me, keeping this body running is no small feet. Running feeds 24/7 hours a day to keep my nutrition up, not eating regular food to keep my stomach under control, running fluids to keep me hydrated since I can not drink water, crushing all my meds four to six times a day to put through my G/J tube, making sure to keep my stoma and port clean so I don’t end up in the hospital with infection, doing PT 5 days a week, occupational 3 days a week, getting IVIG infusions two times a month and Ritoxin infusions four times a year. There are also weekly labs and countless doctor appointments, which result in more testing than anyone could imagine, and now learning to use a new prosthetic leg.

Courtesy of Nicole Nakahara

Does this sound horrible? YES! Even as I type this, I am hit with the overwhelming feeling of it all and this doesn’t include all the fighting I do with insurance just to get things covered I need to keep me alive. It. Is. Exhausting. In those moments where I feel the joy slipping away, I think about love. I think about how much I love my daughter and my husband, my mom, dad, sister, and brother. How much I love my bestest of friends—the ones who have stood by me through all of this and are here on the days when I am screaming into pillows out of frustration. I have to realize in that second, these are my peeps and I have to get out of bed every morning for them just like they do for me.

Courtesy of Nicole Nakahara

I want to help my daughter with her makeup on prom night and be here to talk about her first kiss. I want to have a 10, 20, and 30-year anniversary with the man of my dreams and I want to continue to have adventures at the beach and in the snow and around the fire pit with my village so dig deep and I find that little seed of joy and I pray and ask for it to grow. And you know what, it works because I love them all so much and I know they would do the same for me. Love is actually everything. Oh and also, never forget to laugh. Laughter is truly the best medicine.”

Courtesy of Nicole Nakahara

This story was submitted to Love What Matters by Nicole Nakahara. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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