I’m Walking to End Lupus.
Just by reading my story and becoming aware of this autoimmune disease, you are already walking beside me so thank you for taking the time.
On 10.20.2020 the Lu family will be walking and fundraising to find a cure to end lupus. I’ve been living with this autoimmune disease since I was 17 years old and it’s never been as challenging as the past 3 months of our life. Just like for many others out there, when the coronavirus pandemic hit, it changed my life. I had to abruptly close down my small business- family child care center and begin staying at home. I had been with my daycare children for 3 years, every day from Monday- Friday. The uncertainty of my business and my future started to take it's toll on my body and my mind. I felt my health declining but because of the pandemic, I pushed it aside because I didn't want to even step into a lab in fear of catching COVID-19 with my low WBC and elevated sed rate. But as the news became more and more negative, the white house briefings went from informational to a complete and utter hot mess, my anxiety and stress started to escalate. How am I going to survive financially? What if I catch COVID-19, will I be one of those with pre-exisiting conditions that can't pull through? Why won't everyone wear a mask for a quick 20 minute grocery trip to protect people like me whose life depends on it? Is this really the world that I have to raise my children in? Where something as terrifying as a pandemic has become political? AMERICA, WHY CAN'T WE SAVE EACH OTHER?
So I was completely trapped in the negativity of the media and I couldn't escape, couldn't climb out... so many wasted hours stuck on my phone watching the news, briefing after briefing. With the stress of that, I was reached out to by a family member and advised to stock up as much as possible on plaquenil, aka hydroxychloroquine which is a medication that I have been on since 2005. President Trump had just released a statement saying it could help cure COVID-19. I immediately called my pharmacy and they told me instead of a 3 month supply, they had to cap it at 30 days. I tried advocating for myself, informing them that I need this medication for my autoimmune disease and have needed it every day, 2x day for the past 15 years of my life. They're capping my prescription during a pandemic because it may or may not have an effect on COVID-19 patients made no sense to me. I need this medication to control my lupus just like many others out there. After one press release from Trump, people living with lupus could no longer access their daily medications putting us at more risk than when this pandemic started. The pharmacist heard me but there was nothing that could be done and recommended me calling 30 days before I ran out to ensure a constant flow of hydroxychloroquine.
So the stress that was building up caused my lupus to flare and flare hard. I had many televisit appointments with my primary doctor and rheumatologist trying to get it controlled. I quarantined hard after the stay-at-home order was put into place and barely left the house. The backyard and little walks in the early morning or evening with my children and puzzles were my saving grace. My husband did all the shopping and errands and didn't even think it was a good idea for me to do target drive-up or drive-thrus. This was my life because of this autoimmune disease and I had accepted that and was just grateful for my husband and family who could do these things for me so I could stay at home and limit my exposure.
After 4 months of staying at home living the quarantined life, I needed a view of the ocean so I begged my husband to take us to the beach for a quick picnic just for our own well-being. I could see that my daughter's anxiety was also starting to build and felt we all needed a breath of fresh air. Lupus flares are usually brought on by stress and the sun so I brought my sunscreen, sunshade tent, hat and off we went to La Jolla Shores Beach. We arrived and no one was wearing masks and there was barely two feet in between the groups of people set up on the sand. We informed our children that we would not be going onto the sand but we can still have our picnic on the grass with the view that we came for. After about an hour of giggling, cuddles, and a much needed picnic that healed my soul, we headed home.
I immediately had a headache so I downed my hydroflask of water, took tylenol PM and went to sleep. The next day I couldn't shake my headache no matter what pain medication I tried and how much water I drank and I felt extremely fatigue so I took a nap (in case you don't have kids, naps with a 2 year old energetic boy do not happen). I woke up in time for dinner and immediately knew I was hot and sweating profusely. I grabbed the thermometer and sure enough, fever of 101. Immediately I questioned if I have COVID-19 and called my doctor. I knew my body enough to know that the fever without cold symptoms, body aches, headache, and an upset stomach wasn't normal. I couldn't even hold anything down which is what led me to reach out to a doctor. The doctor on call advised me to rush into Urgent Care and get tested for COVID-19 before they closed. My husband and I agreed that it was best for me to quarantine at my mom's house until my results came back to protect our children... and my mom and step dad are both nurses so that definitely doesn't hurt.
I'm not going to lie to you, "quarantining" felt like a v-a-c-a-t-i-o-n. Okay, vacation with a fever but after endless hours of Grey's Anatomy on netflix and having every healthy meal brought up to my bedside, I felt like I was living the dream. After 2 days, my results came back and they were negative so I rejoiced, packed my stuff, and headed home. As the days went by, my fever didn't go away and my symptoms started to multiply. I could barely get through the days with my eyes open. I had no appetite and couldn't find the strength to do anything. Thank God for my husband, parents, and my in-laws because they took care of my children, me, and my house every single day. Then I finally called my doctor back and informed her of my symptoms and she advised me to head straight to urgent care. At urgent care, I was severely dehydrated so they pumped my IV with two bags of fluids, antibiotics, and drew blood. When the results came back, my potassium level was extremely low, my wbc was at 1.8, and my chest x-ray showed the beginning signs of pnemounia but the doctor said it didn't look like COVID-19 however they retested me anyways. So with my medical history and also having ITP (my immune system attacks platelets), they sent me to ER.
I was so scared to step foot into an ER during a pandemic but when I arrived, their safety precautions were on point. They put me in a wheel chair in a outdoor tented area and I was in a bed within 10 minutes.Test after test, scan after scan was done with different doctors and nurses dressed in PPE coming in and out getting my full medical history and possible exposure to COVID-19. They informed me that my CT scan showed my kidney stone was still there, chest x-ray does show pleural effusion, and my sed rate (inflammation markers) was at 75 when the normal range is 0-15. They asked me why I stopped taking a medication used for arthritis and cancer called methotrexate which I was prescribed in February and I told them that I was having arthritis flare but after 3 weeks of being on the medication, I started to have intense chest pain, overall didnt feel good, and also had a dry cough that I couldn't shake no matter how much honey, lemon, ginger & tumeric tea I drank and medication I took. The side effects include all of these symptoms and so much more- fatigue, brain fog, hair loss, liver disease, inflammation in the lungs, drop in WBC, dip in blood platelets which can lead to abdominal bleeding. Hmm, that's why I stopped it by myself and informed my rheumatologist that I would not be taking it anymore. The doctor thought I was currently on it and that's what he was going to blame my symptoms on but after I told him I had stopped in March, he went back to his drawing board.
They came back and informed me that they would be admitting into the hospital and were working on my room on the PUI (Persons Under Investigation) floor because they weren't sure if it's my lupus or COVID-19 or both. I was tested for COVID-19 again in the ER and then after being hospitalized for two days, my results came back negative and they informed me it was a lupus flare. The rheumatologist increased my prednisone prescription from 5mg to 40mg to treat my flare and also my low WBC levels.
If you've known me since high school, you may already know that this steroid, prednisone made me bat shit crazy my senior year. Yes, it still has the same affect on me to this day when I'm prescribed anything more than 10mg/day. But 15 years later, it's still the only medication that I can take to control my lupus flares. In conjuction with prednisone, I also take hydroxychloroquine and cellcept 2 times/day. I used to be able to control my lupus with 2/3 medications at any given time but now I'm on all 3 and my lupus still isn't improving. To me, prednisone is the devil, the absolute f***ing devil. It's an upper, a steroid. The high doses put me in a medically induced manic episode... every. single. time.
This has happened 3 times in my life, first when I was diagnosed at 17 years old with lupus and it was so bad that they had to give me an IV of 1,000mg of prednisone, 3x in 1 week. Mind you this was May of my senior year and I was about to graduate high school, senior activities were about to commence, and I got hit with the worst news of my life. I kept positive and powered through the end of high school... batshit crazy. I'm talking like I legit thought I was God, couldn't be trusted to drive, shop, hell... SPEAK! I was so out of my mind on this steroid that my mother who is a RN psyche nurse had to round up my older and bigger wrestler brothers to accompany us to the pediatric hospital because I told them "I don't have Lupus... I'm God." As my friends and family visited me, I wrote completely insane things in their senior yearbooks that they still show me to this very day. But most of my entries were crazy but loving messages that usually mentioned that money isn't currency anymore and only happiness matters. No one had to work in a job that they didn't love because we could all follow our passion now that money wasn't an object and God (aka ME) was now here on earth. I remember writing to one of my good friends from first grade that when we grew up and became adults, we could live next door to each other and continue our friendship. Side note: Mom, I love you so much but whyyyyyy did you let me write in anyone's yearbook?! LOL. Anyways, as the prednisone slowly left my system that summer, my manic episode also started to simmer but it took months for the effects to fully fade. I talked to my mom after all of that and decided that I needed a much needed break from life and I wasn't going to be going to college in the fall, we decided that instead we would be going to Europe to regroup our souls, take a deep breath of life, and travel.
My second experience with a high dose of prednisone was four years ago, 2016 so 11 years after being diagnosed. My lupus had been pretty controlled for years and I went all that time without taking medication (without my rheumatologist knowing which I would definitely not recommend now that I am much older and wiser). I was working at a non-profit elementary-aged child care center as the Site Director of 72 children. I loved my job with all my heart and had been with my company, Harmonium for 10 years. I had started as an Activity Aide and worked my way up the ladder to my own site, the biggest site. I had benefits for my daughter and myself and were interviewing people with their masters in education to be my Activity Leader. I had no desire to go back to school to lose my position as a Site Director after realizing that my experience and hard work is why I was in my current position. Don't get me wrong, education is so important and one day I will go back and officially get my child development degree but I needed benefits- health care, dental, vacation, and sick time for myself and my daughter. She was my number one priority.
Leading up to this moment, I was starting to realize that I wasn't feeling good. I had been calling out of work a lot and even drained my sick time. But I was starting to get headaches and my stomach was really upset for a couple days so I thought it was food poisioning. It was almost time for my 3 month rheumatologist appointment which I had probably put off for 5 months due to rescheduling because I never did my bloodwork on time. I am absolutely the worst patient in the world. So I went to the lab and did my standing order and went back to work. At work, I got a massive amounts of phone calls and my phone was on silent but when I had a moment to take my break, I checked my voicemail and it was my doctor and she said "Kristina, immediately head to the ER right now and do not drive yourself. I have already talked to your mother and your family and they are coming to pick you up from work." I took a moment to gather myself before addressing my staff and my children to inform them that I had to leave for a doctors appointment and I did not know when I would be returning but most likely, not for awhile. I went home and was able to pack a backpack and head to the ER with my boyfriend at the time. Shortly after being in the ER, I started to freak out. I had completely maxed out my sick time and had some vacation time but not enough to cover a lupus flare. I spoke with Kaiser in tears and they actually got me enrolled in their program and everything from my medication to my hospital stay to charges with my follow up were waived. I was extremely grateful and reminded by my mom that no matter what happens in our lives, it always works out. I found out in that ER that I had a new diagnosis, ITP. "Immune thrombocytopenic purpura (ITP) is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. People with the disease have too few platelets in the blood" My platelet levels were at nothing- zip and with my current headaches and sudden bruising after one touch, my doctor realized how serious my condition was. I took a deep breath, lupus and ITP. WTF. So my next question to the doctor was "what is the treatment?" Drum roll, please... prednisone. So in went the prednisone flowing through my veins causing yet another manic episode.
When I say manic episode, let me explain. Usually I'm a pretty shy and quiet girl, nice yet reserved. I can keep myself together but I'm a hot mess- I don't like to clean and I'm okay with a little... disorganization. On a normal day, my car was pretty gross, I'm not going to lie and I hated doing laundry so it took me about 2 weeks every time from throwing clothes into the washer to putting them back in my drawers. However when prednisone is doing its thing coursing through me, I am outgoing. Everything that comes out of my mouth during this manic episode is well thought out, has a purpose, and is just an efficient amount of information completely and utterly pouring out of my mouth whether you want to listen to it or not (Please ask my family). So if you've never experienced a steroid induced manic episode, let me try and explain it to you. It's like having OCD and everything needs to be in it's place but you're constantly running back and forth doing so many little things that you are actually not accomplishing one thing. I have no appetite and then all of a sudden, I get a sudden and deep urge of hunger like you do after smoking a good joint. But I can't have sodium or processed sugars so I have to eat extremely healthy and have lost a lot of weight. Yes, it's a plus but I can't shake the discomfort when people compliment it because I only lost weight due to being sick which is nothing to be proud of. I have no patience for anyone unless you are under the age of 10 years old and if you are not, I will probably snap at you if you try and tell me to sit down or calm down because I literally cannnot (Sorry, Raymond.. I love you so much). So when I left the hospital, my family and boyfriend kept a close eye on me as the manic episode ran it's course.
Finally, things started to calm and I remember being at the Del Mar Fair on the ferris wheel with Raymond and feeling this extreme amount of relief because I knew the prednisone had calmed down enough for me to enjoy the moment. I also realized in that very moment that Raymond was the man that I wanted to marry. I had never been cared for like that by a man in my entire life. It was by far the scariest moment, medical or otherwise, and he stepped up, handled everything, took care of Kourtney, and kept us safe and provided for. If your significant other doesn't step up in a moment when you need them- quickly step out of that shit. As we tried to find our normal, I quickly depleted my vacation time as well. I had come to the realization that I didn't feel ready to go back to work and the head of HR told me that other employees at other sites and even office staff at Harmonium wanted to donate their sick time to me after hearing what happened. I didn't want to take anyone's sick time but the truth of it was that I absolutely needed it. They couldn't tell me who exactly donated but I wrote a general email to everyone thanking them from the bottom of my heart. Where I was so unbelievably grateful to every single person who donated their sick time and well wishes to me, I was also very disappointed in the company.
Kourtney was about to start kindergarten and I had choiced her into Jerabek elementary thinking she would be able to come to Klassic Kids and be with me before and after school because the company had allowed other Directors in the past to do the same. When I spoke to the current Program Administrator before getting sick, she informed me that she had decided not to approve Kourtney attending my program. I had already choiced her in and she had already been accepted at this point so I pleaded and begged but the answer was still no. For me, I believe I had proven myself as a responsible Director and if you actually knew me, personal or professional, you would know that Kourtney absolutely would not be getting any type of special treatment but she didn't care what I had to say. So Raymond and I went back and forth on the subject and I quickly came to the conclusion that leaving my house at 6:00am only to see Kourney at 6:30pm every week day was not going to work for this mama. I was working split shifts, Monday- Friday from 6:30am- 10:30am, 2pm-6pm for the first 5 years of Kourtney's life. I refused not to be able to be with my own daughter while taking care of other family's children so I put in my official two week notice after a decade of being with this company.
What am I going to do with my life? Raymond and I planned a much needed family vacation on a carnival cruise to Mexico. Deep down inside, with that special woman's intuition, I suspected that he was going to propose. We had been together for years and by having Kourtney, it definitely sped up the maturity of our relationship because I knew and he knew early on that he either had to step up to boyfriend/stepdad or step out. There was no inbetween. So then one day he asks if I wanted to go on a picnic at the bay and I said yes and for the first time of my life, I cooked. Okay, let's not get carried away- I made pesto from scratch for our chicken sandwiches that I packed for our picnic but it was a momentous moment in our relationship because Raymond is the chef. He always joked around that he wouldn't marry me until I cooked for him. As I waited for him to get off work, it suddenly hit me that he may propose. I shook that idea off because why would he propose at this picnic instead of a special cruise that we had already made reservations for. But then I decided to paint my nails because they were a hot mess and I didn't want to miss this opportunity for the gram in case it did happen. So I painted my nails my favorite color, purple. Then about 1.2 seconds later I realized that I had the picnic basket lining still in the dryer and had to clip it onto the poles. Well Raymond was almost at my house and my nails were still wet but I didn't want him to know that I had just painted them because I knew he would know that I thought he was going to propose (hope you followed that and if not, I understand if you have to reread it). So I carefully but in panic-mode tried to put this effin picnic basket back together before he walked through those doors. Yes, I completely obliterated my purple nail polish. I was trying to fix it by applying another layer over the mess when he opened the door and what do you think he said? "Why are you doing your nails? Do you think I'm going to propose or something? HA!" So I glared at him and starting packing this stupid picnic basket with such force that there was no saving my nails. We watched the sunset, ate our dinner, had our picnic and guess what? HE PROPOSED. I thought I had mentally prepped myself for this moment but as he got down on one knee and it was just the two of us and the view of the san diego bay, I couldn't even proccess the words coming out of his mouth. To this day, I have no idea what his speech was because I was just completely maxed out in happiness, love... and a tinge of prednisone. Obviously I said yes and the nice family at the bonfire pit over took our picture to capture the moment.
Mind you, my mind is still racing- prednisone is still flowing. This is when I get all my best ideas- hands down. Okay, where do I go from here? I just left my job and my benefits but I just got engaged so now I have opportunity to find something that brings me joy because obviously my lupus and ITP will flare with stress. Well I want the flexibility to be able to drop off and pick up Kourtney from school and I love working with children. I can start my own daycare business. So I begin researching what is needed to start a family child care in my home. I quickly realized that I was already qualified, more than qualified because I was working at a licensed center so I had been fingerprinted, background checked, cpr and first aid certified, etc. I started to put everything together to turn in my application to community care licensing to get my business off the ground.
In the mean time, Raymond and I decided to plan our wedding and quickly that way once I started my business, I wouldn't have to take a break to plan a wedding. I had months left and just needed to find a venue first. So in my manic episode, I planned a business and a wedding. We knew we didn't want it to be extravagant- that wasn't us. We wanted rustic, simple, big ass party with everyone we loved surrounding us... drunk and well fed. I no longer had any income so we had a limit and that was it. We had family who gifted us money for our wedding and we stayed within our budget. It was worth every single freakin' penny. I have never felt a high like I did that night of our wedding- and I've thought I was God. I married the love of my existence that made me laugh and cry after hearing his vows where he professed his love not only to me, but to Kourtney. Yes, he's a keeper.
After our wedding, we basked in all the glory of our honeymoon in Tulum and came back refreshed, relaxed, and ready for the next part of our lives. I opened Infinity Kids Academy. A small licensed family child care for infants- elementary aged children. I started with 2 children for about 6 months and I worried how my business would do. Is this even feasible? Does it have a future? All of a sudden, I had inquires and two sets of siblings started the same week and just like that, I had 6 children enrolled. As my customers reviewed me on yelp and google, more and more inquires came. I now needed an assistant and applied for a large license going from a max of 8 children to 14. Since January 2017, I have reached capacity at 14 children and hired two part-time staff. I've poured my heart into my center and cultivated relationships with my daycare families that literally still have me in touch with the first child who walked through my doors and is now going into 2nd grade. I get to wake up and live my passion every single day, excited and completely blessed to be a part of these children's lives and their families. I don't have to worry about admin bullshit and useless paperwork and meetings because the only person I have to answer to is my community care licensing analyst and after running a licensed child care center, I am more than equipped to handle my family child care where the regulations are definitely not as strict but because it's been engrained in me for a decade, I run my licensed family child care center like a licensed preschool with all the Title 22 regulations. So although I was in a medically induced manic episode, I do get to live that life that I described- where money is not an object, my passion and happiness is my only currency... well that matters. First, I found my passion, happiness came, then money followed. That's how life should be led and I'm fortunate enough to have my foundation and support from my husband and my family that allows me these priviledges.
... to be continued during my next night of insomnia
I know one day a lupus flare will take my life but today, I’m joining the race to find a cure and help all of those who are fighting the same invisible but deadly battle that I am. From my appearance alone, you can’t tell that my body is attacking itself, you’d think I was healthy and fine. The truth is some nights my rheumatoid arthritis hits at 3:00am and I wake up in tears ands so much pain that my husband has to help me to the bathroom then give me pain medication to get through the night. Some mornings I brace my mind to give my body a second to process if my arthritis level is going to be mild enough for me to get out of bed without help. My hair has fallen out so many times due to lupus flares that it’s so thin, I should be using baby hair ties at the end of my braids. Whether I’m cold from the winter weather or walking into the fridge section at Costco, my toes and fingers turn blue because of reynauds phenomenon. When I do have a lupus flare, a red rash appears on the bridge of my nose and both cheeks resembling a butterfly.
This is only a glimpse of my battle with lupus, the daily medications, especially prednisone, causes so many side effects that some days I feel that it’s not worth it. but I take it for my family because I know I have to fight this battle with everything I have so I can witness my own kids growing up and finding their own love, passion, and happiness and to grow old with my husband.
If you can, please support the Lu family in our walk to end lupus. #lupusaurusrex #livingwithlupus #lupusfoundationofamerica
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? Any generous contribution of can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Imagine a day when doctors can say, there is a cure for lupus. Until that day though, there is work to be done. That’s why I’m taking action in the fight against lupus. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
- Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!