I don’t even know where to begin? Since 2012 I’ve been battling Rheumatoid Arthritis and that has been a struggle on a day to day basis, so now that I’m living with Lupus it has been physically and emotionally overwhelming. I had put blogging on hold around August of 2014 because my husband and I were preparing for Ellyse’s first birthday party in California. The summer of 2014 was one to remember, such great times we had with family. If I had known that would’ve been one of the last times seeing all of our friends and family for a while then I would of cherished every minute more dearly. September second, a day after Labor day which we spent at the beach, I found myself in urgent care with what I thought was a fever. I was given some pain medications and sent home. I wasn’t too worried about it ’cause we had a flight back to Colorado to catch the next day.
Once reaching home in Colorado things seemed to change, I noticed my health getting worst. I had less energy and more joint pain than usual. About three weeks later after attending CSU’s 1st home football game for the season of 2014, I found myself rushing to the emergency after the game. I went in because I just couldn’t stand the pain I was feeling. It was like I just got hit by a bus and I had shattered every bone in my body. The pain was radiating all over my joints; It hurt when I would move. I was since then admitted and then discharged out of the hospital every two weeks after that first time rushing into the emergency and I mean EVERY 2 weeks!! It was like my body started acting up every saturday night and then I found myself in the emergency getting admitted again.
The first time I went into the hospital I was told that my kidneys looked dehydrated and that I was to be admitted for fluids and was given stronger pain medications to help with the pain because they were unsure of what was causing the pain. The second time I was admitted for the same reason because I was still dehydrated. The 3rd time was when I had more blood test done and a Kidney Biopsy which tested me positive for Lupus Nephritis. Late September I was diagnosed with Stage 4 Lupus Nephritis. Lupus Nephritis is an inflammation of the kidneys caused by systemic lupus erythematosus. In layman terms and how I understand the type of lupus I have is that its an auto immune disease where my own body is attacking itself and in my case my body thinks its protecting my kidneys, but its actually attacking and damaging them. So yeah… the only person strong enough to kick my butt is myself lol. Lupus has been attacking my kidneys for sometime now and I just never knew it. Mentally I wasn’t prepared for all that was about to happen over the next few months. After finding out the proper diagnosis, the doctors were keen on setting me up with the right treatments and medications all with the hopes that I didn’t need dialysis and my kidneys would gain more function on their own. During all of this I wanted nothing more but to be home with my husband and daughter. I put them before my health. I found myself always fighting to come home from the hospital when I knew I needed to stay. Guess that’s why I kept ending back in the hospital almost every week. I honestly didn’t think I was that sick, like on the verge of dying kind of sick. I felt fine, looked fine and was still able to get up everyday to take care of Ellyse. I totally ignored what the doctors were telling me about how aggressively the lupus was attacking my kidneys and that I could DIE. I just figured I’d get better in a few weeks like all I had was the flu or a cold. In my mind I felt as healthy as a horse! When the doctors would stress the seriousness of my condition all I heard was “wham wham wham Lupus blah, blah, blah”. I was a really bad patient and didn’t take anything seriously because I was scared to believe that I was at the brink of death when I mentally felt healthy. On top of being sick and battling kidney failure, adapting to the new medications was hard for me. The medications were so strong I couldn’t keep them down and not to mention the amount of meds I was put on so quickly was a shock to my body. I also have low platelets which caused uncontrollable bleeding. One time I blew my nose and had my first nose bleed that wouldn’t stop for two hours and was one of the reasons I went to the ER again… Talk about traumatizing for your first ever nose bleed lol. One of the times I was admitted I was given fluids to help keep me hydrated, but seeing that my kidneys weren’t working the way they were meant to, I retained all that water weight and was a swollen ballon for weeks! I felt soooooo ugly! I hid at home until the swelling went down (which never happened till I started dialysis) Oh not to mention Chemotherapy!! Ugh, my hair started falling out after my first treatment. My husband would hold me and let me cry my eyes out every time I brushed my hair. Lets just say this was a very dark time for my inner Fashion Diva as I struggled to keep up with my physical appearance. In between the months of September till just after Halloween I had been in and out of the emergency for a total of eight times. The last time I was discharged from the hospital just before Halloween, I was given my first Cytoxan chemotherapy treatment and then was scheduled to return a month later for my second treatment on December twenty second as an outpatient . That month was the best month I got to spend with my tiny family at home, going christmas shopping and preparing for Christmas. I felt ok and normal because I was telling myself that it was for the simple fact that I was needed at home. Eli had to go to work and living in Fort Collins we didn’t have too much family to rely on to help us watch Ellyse; just friends and amazing church members from relief society who offered to watch Ellyse the times I was stuck in the hospital and Eli had to go to work. I am so grateful for the help we received during that time. The amount of thanks I have inside could never be truly expressed. Still ignoring how sick I was becoming I put all of my focus and strength into my family and my sister and brothe-in-law who came to visit with her children for the holiday season. I was excited that this was going to be our first white snowy Christmas in Colorado.
I woke up on December twenty second, all the children were still sleeping. I snuck off down stairs to make myself breakfast, but for some reason I felt different that morning. I knew I didn’t wanna go in for chemo but I knew I had too. It’s like crazy to think that that was the last day in my home and I didn’t even know it. I found myself staring at my kitchen appreciating it a bit more that day. Looking at my decorations in the living room five seconds longer than I normally would. I had an eerie feeling that something was not right but I just couldn’t put my finger on it. Feeling a bit sad, I sat on the stairs in my home with my dog Princess Cleo taking selfies and sharing my ham and cheese sandwich with her while I waited for my ride to Chemo. I kissed my husband and the sleeping children as I left the house not knowing that that was to be one of the last times I would be there. Upon arriving to the Chemo Outpatient Centere I was under the impression that it was only going to take me about six hours, then I would be home. As the nurses tried to get the IV site in my arm, my veins kept popping. It was from that moment that the nurses and doctors became suspicious that something else was wrong and that I should be admitted to the hospital immediately.I was hopeful that it was only going to be a overnight stay because Christmas was two days later, but that hope was taken away when I found out what lupus was doing to me now. Later on Christmas Eve, I found out that not only was the Lupus attacking my kidneys, but also my blood cells causing me to need numerous blood transfusions, platelets and extensive Plasma treatments and also the start of dialysis to help my kidneys along while my body was fighting through my blood cells being destroyed by lupus. Geez! I felt like I was a snowball of problems that holiday season! I sat back in my hospital bed all by myself and watched all the important holidays pass me by. I watched my daughter open her christmas gifts through FaceTime. I also counted down on New years eve with my husband through FaceTime… I even spent my birthday on January ninth in the hospital! lucky for me the hospital staff were nice enough to let us use the Sun room to accommodate a few family and friends for a small birthday party. I never wanted Eli to bring Ellyse to the hospital because I felt there were too many sick people there and it was not a place for a healthy baby to be, plus it was below fifteen degrees outside and it started to snow really bad christmas day, I seen it as me still trying to “mother” from a far even if it meant sacrificing them seeing me to keep my husband and daughter nice and healthy, then thats what I wanted. Mentally I couldn’t take it anymore… staring at the same four walls and the same ticking clock day in and day out, sheesh! man I can see and understand why people go cuckoo after awhile in the hospital because I started to get anxiety being in the hospital for staying so long. I don’t want to go into hard core details because this blog would never end so I’ll save all the medical talk for my book I’ll probably publish someday lol. Long story short, I couldn’t afford to stay in the states for all the treatments I was going to need to stay alive. The doctors felt it was the best decision to continue treatments in New Zealand as I am also a New Zealand citizen. Going to New Zealand where health care is free, was looking like my best and was actually my only option considering I was in need of so many different treatments besides starting dialysis.
In critical condition, I was dialyzed then discharged from the hospital January 12th 2014 at eleven o’clock am. My flight back to New Zealand was at three o’clock pm that very same day because I was due for another dialysis session in the next seventy two hours and my flight back home already took up about twenty hours of that time. All I can remember is walking into my home in Colorado seeing my family and friends packing my luggages in a hurry. All I could do was breakdown and cry. I hadn’t been home in almost a month and I was realizing that it was going to be the last time I was standing in the first house Eli and I consider a “home” for us and the first house we brought our daughter home after she was born. I was taking all of this in…because in a matter of two hours, I had to get in the car and zoom down to Denver International Airport to catch our flight. To make matters worst, Eli and I hadn’t even gotten the chance to sit and talk and say goodbye properly because I was so sick in the hospital. Eli was so busy helping me and Ellyse through the airport and security and making sure we made the flight because we were late. As we reached the gate, Ellyse ran to the window and dragged Eli with her to look at the plane. I sat in my wheelchair too weak to move. Five minutes after watching them play at the window, the gate agent signaled that it was our turn to board. My heart dropped as I looked to Eli. I had felt heart break before but this kind of heart break was more than I could bare at that time with everything that was happening. To be stuck in a hospital for a whole month then sent off to another country and having to leave all my friends and family suddenly, and then having to say good bye to the love of my life, ALL at the same time?! My gosh! I’m surprised I am still alive. Eli kissed and hugged us, both of us full of tears he said to me “I love you with all my soul” and I replied “I love you with all my heart” this being our saying that we have always said to each other since we were seventeen years old. Those being our last words to each other, Ellyse and I were wheeled off to board our eigtheen hour flight back to New Zealand.
I was so weak the whole flight through but kept praying for the strength to stay awake for Ellyse’s sake. Just getting out of the hospital, all I wanted to do was lay my head down and rest but it was just me and Ellyse. I found myself dosing off here and there, but I’m so grateful for the flight attendants who helped us though the flight from Denver to San Fransico then to New Zealand. When we touched down in Auckland I was beyond exhausted. I could barely hold onto Ellyse. It’s a miracle I made it just before I passed out with Ellyse in my arms in front of my Parents and older siblings. As I was being wheeled out to passenger arrival, I seen my Mom and yelled out for her, then my vision started to go black and I passed out. I’m forever thankful for the two Air New Zealand flight attendants that helped collect our luggage and pushed us through to meet my family who was waiting for us. To be honest I don’t even remember what happened next? I just remember a glimpse of getting into an ambulance and then waking up in the hospital. It was a scramble to get things together for me here in New Zealand. Doctors here knew nothing of how critical my lupus was and that I was due for Dialysis again from leaving the states. Luckily things fell into place where as I received all the continuous treatments I needed to stay alive. I lived out of North Shore hospital here in Auckland for two months. I am now at home with Ellyse but still return to North Shore hospital for dialysis 3 days a week for four and half hours. I’ve completed four sessions of chemotherapy that has helped stop my lupus from attacking other organs in my body, but my lupus is still very active. My kidneys however, won’t recover from the damages lupus has done over the years when I was unaware I even had lupus. I’m now awaiting a kidney transplant. I’m here in New Zealand until my Lupus goes into remission and we find a successful donor who matches me. I’ve sat quietly to myself a million times and cried out to Heavenly Father “why me?… Why my tiny family!? Did I really deserve this?” Then I would paste things from my past and tell myself that that was why I’m suffering now. I know Heavenly Father isn’t about revenge. So I’ve come to the conclusion that “Every thing does happen for a reason” I may not know why it’s all happening to me now, but I’ll find out soon enough. Every thought I’ve had and belief has been tested. I’ve considered turning my back on everything I’ve ever known and was ever taught but then I thought to myself “I’m rock bottom right now, with nowhere else to go but up. Should I just stew in darkness or look up for hope?” Simple as that. Should I live life hating everything because of a sickness, or see the beauty in the rest of my life to come? This is a new journey and battle my family and I must endure and I’m proud you’re here supporting us. Kind words of encouragement goes a very long way… You’d be surprised how much you’ve touched a person though a simple Facebook message or Instagram comment, thank you. As for now I’ll be here in New Zealand awaiting my kidney transplant and fighting this battle as hard as the Japanese fought against Godzilla! 🙂
-Ace Mamii
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acemamii 