I'm Back

Wow. I have been M.I.A for over six months now. Don't worry I will be posting all that has happened in these past six months in a series of posts. I'm finally back and I finally feel like myself again! Boy, have I got stories for you. I pretty much have been M.I.A from everything (all my social media accounts) besides twitter. It's nice to escape once in a while. I am already cringing, thinking about my e-mails that I haven't checked in six months. I am not looking forward to going through all of it last time I had over 3,000 e-mails. Ugh. I will go through them tomorrow and delete, delete, delete.

I had my first Rituxan infusion on Wednesday, March 20th. I was there from 8:30AM til 2:30PM. It took forever for the nurse to start my IV. Once the rituxan started to run through my veins, it just felt like cold liquid going through my veins. The nurse had to give me pulse steroids and saline too. At the beginning I had to remember to breathe and relax. I felt my throat closing in. My rituxan infusion went pretty well.

On Friday, March 22nd, I went to see my rheumatologist and she notices that even though I have been taking the prednisone my body was not absorbing it. I didn't gain any weight and I did not have the "moon face." She also noticed that I was still going through a lupus flare. This was two days after I had the Rituxan infusion. She wanted me to go back to the ER to get more labs done. I had a feeling that I was going to be admitted again. The ER was so crowded (old people in wheelchairs with breathalyzers, babies crying, people sitting in all of the chairs). I got there at 4PM and I wasn't seen by an ER doctor until 6PM. The wait was ridiculous. I guess more people were sick since it was close to Easter.

After I saw Dr. Eng, she told me they were admitting me. It was about 10PM. They put me on the 8th floor, which is the oncology unit. Everything was a blur-especially time. Most of the time I wasn't sure what day it was (at least I had my phone to let me know what day it was). My vision was very blurry, I was highly medicated. I still felt lightheaded, had heart pains, night sweats, no appetite, etc.

A lot has happened in these past six months. I was hospitalized again from March till April. I stayed in the hospital for another twelve days. What was wrong with me? I was going through a really severe lupus flare (meaning my lupus was very active). The hospital doctors and my doctor wanted to make sure that we rule out any other diseases that I may have because people with lupus are prone to having other autoimmune diseases too. But while I was in the hospital, the doctors couldn't figure out what was going on with me. My lupus was not "textbook lupus." It was all over the place, making it very hard for the doctors to treat me.

I have been to many hospitals and I must say that Hoag Hospital in Newport Beach has one of the BEST patient care ever. The doctors are top-notch and the nurses, phlebotomists, technicians, were all very compassionate, understanding, and you can tell that they care and love what they do. Not a lot of people can say that they love their jobs. I hope one day I can say that I love what I do.

xoxo,
Kat

Lupus Update

Good news: I got approved for Rituxan! I am so happy. I am hoping that Rituxan works for me. Rituxan is a biological that is administered via IV infusion. I'm okay with needles, but I hate getting IV. I'm scared of IV needles. My veins are very small and whenever the nurses try to start an IV, it takes forever. It hurts. Sometimes they even burst my vein. Then they start poking around another vein and moving the IV needle around to see if they can hit a vein. The nurses told me that my veins like to run. My brother is taking me to get my first Rituxan infusion tomorrow morning at 8am. 

What is Rituxan? Rituxan is a very unique biological in that the treatment cycle is every four-six months. Rituxan targets B-cells. Rituxan works by targeting the CD20 antigen on normal and malignant B-cells. Then the body’s natural immune defenses are recruited to attack and kill the marked B-cells. Stem cells (young cells in the bone marrow that will develop into the various types of cells) do not have the CD20 antigen. This allows healthy B-cells to regenerate after treatment. Rituxan is given intravenous over 4-5 hours. The time may be longer depending on whether or not you have received Rituxan in the past, or how well you tolerate Rituxan. 

Rituxan may take up to 3 months before I start to feel the effects. This anti-CD20 monoclonal antibody would appear to be a rational choice for use when conventional therapy is unsuccessful because it depletes the B-cells that are responsible for the production of pathogenic lupus-associated autoantibodies, cytokines, and chemokines.

Some people who received Rituxan developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment. This is a very small chance. What do I have to lose?

At first when I researched about Rituxan, I got really scared when I read about all the neurological side effects. However, it’s a risk I’m willing to take. I was nervous and didn’t know if it would work. So I went on my twitter account and asked my lupus/rheum community if Rituxan work. It does. They help calm my nerves and anxiety about Rituxan. They shared their stories with me about their experiences. This gives me HOPE that it works for me. Getting approved for Rituxan couldn’t come at a better time.

Prednisone is really not working for me. My rashes are spreading. They are all over my face and chest. Every other day I would get a fever of 101-103. Meaning that I have an infection that my body is trying to fight. I have really bad migraines. I've been having chest pain, tightness, and pressure. It makes me have shortness of breath. As a result, my voice has changed pitch. I am so tired all the time. I have no energy. I get very winded when I go to the mall, grocery store, or doing anything. I usually want to go home fast. One of my pet peeve is people walking slow. I use to walk really fast. However, I now walk slow cause I am tired and my balance is off.  I still need to take a shower sitting on a chair. My hair is thinner-they fall out in strands not clumps. I am supposed to be gaining weight, but I haven't gain any. Since being home I have lost more weight. I weigh myself today and I am at 103lbs. How did I lose so much weight. Food is still an issue. I am back on my diet of soups, fruits, and salads. I still can't eat any type of meat at all. Sometimes I just eat plain rice by itself. I don't enjoy my food. I just eat it to function. My stomach is not use to having a lot of food in it. When my parents force me to eat too much my stomach would hurt the whole day and night. It's very uncomfortable. 

Last Saturday I put on a lot of makeup to cover my rashes so I may go to the Simon Norton Museum with my brother. However we did not go because I felt lightheaded and my heart started to hurt. So I took a two-hour nap instead. When I woke up I noticed that I had night sweats while I was sleeping. Hopefully this doesn't happen again when we try to go this Saturday. 

I had a little scare today. I decided to take a shower. It wasn't a good idea. I wanted to take a shower so that I can feel clean. I still sit on a chair to take a shower. While I was in the shower my heart started to hurt, I couldn’t breathe, I felt lightheaded and knew I was going to faint. I felt like throwing up too. I only shampooed my hair really fast. Then I wrapped my body and hair in towels and got out of the shower. I was so weak that I had to sit on the tile floor. I still felt like fainting so I wiped my body really fast. I then put on my clothes while sitting. I then opened the door and walk to the bed to sit down. No body was at home. When my mom came home from work I told her what happened and she banded me from taking a shower when no one is home. She is afraid that something serious could have happened to me. As you can see I am still very weak. My mom is probably going to wash my hair from now on. I’ve learned my lesson.

Wish me luck on my Rituxan infusion tomorrow! Hopefully I start to feel better in no time. 

xoxo,

Kat

Sick And Tired Of Being Sick And Tired

As you can see I have an IV drip on each arm for saline and the blood transfusion, wires for my heart.

I thought I was going to get a break in 2013. I was so wrong. It's been 2 weeks since I've been discharged from the hospital. I'm still in shock. I have lupus for the past 5 years, how did I missed all the signs that I am going through a MAJOR LUPUS FLARE? Did I subconsciously choose to ignore all of them?

The day right after Christmas, I got very sick. I thought it was the flu since the flu was supposed to be deadly this season. It never crossed my mind that I could be having a Lupus flare.  I had a fever, body aches, migraines, runny nose, fatigue, sore throat, dry cough, night sweats and chills. I was bedridden for a week. When the fever broke I thought I was better.  I noticed that I have rashes on my arms. I don't know why I just brushed the rashes aside because whenever I get rashes it means that my lupus is active. I had the flu-like symptoms throughout the whole month of January. The symptoms would come and go. When I thought I was doing better I would get sick again. The rashes got worst, but they did not spread.  I got them on my legs too. After about two weeks and my use of cortizone cream the rashes went away. There were times when I couldn't walk because my leg hurt and was stiff from the arthritis pain. I couldn't bent my leg to walk. My joints started to swell and I couldn't move my fingers or hand.(Here's another symptom of my lupus flaring that I missed.) I noticed that my lymph nodes were also swollen, making it hard for me to eat. It hurt to chew food or even opening my jaw. My body was shaky.

The  whole month of February I couldn't eat. My appetite was gone. Food (all kinds of food) tasted nasty to me or I just couldn't taste it. Whenever I put food in my mouth and I can't stomach it or if it tasted off, I would just stop eating. I basically only survived on soup, liquids, and fruit. I couldn't handle any type of meat, fast food, junk food, ice cream, etc. I started to have major anxiety. My stomach was always churning. It felt like acid reflux. There were many times when I had the urge to throw up. Even brushing my teeth made me want to throw up. I couldn't stand the toothpaste. Every time I went out to eat with my brother and sister the minute I got home I would have a stomach ache. The food just went out the other way. Nothing sticks. I started to lose more weight (weight that I can't afford to lose.) I was already skinny to began with.

I started to get lightheaded and feeling like I'm going to faint everyday. The lightheadedness was the worst. It was 24/7 anything I did I felt lightheaded. I felt lightheaded when I get up in the morning, in the shower, looking out the window, opening the fridge, walking, etc. Every time this happened I would go sit down or lay down. By this time I knew that something was seriously wrong. My complexion wasn't so great. I looked very pale/green, thin, and sickly. My eyes were very sunken in and my face is very gaunt. My hands look like a child's hand (whenever I lose weight they become thinner too especially my fingers). My doctor's appointment was on February 22nd at 8 AM. Two days before my appointment I told my sister that I have a feeling that I don't have enough blood.

When I went to my doctor's appointment, my brother had to held my hand in case I faint or fall. While we were walking I started to feel lightheaded and my brother had to held me up. I really scared my brother. He even had to sign in for me. I told my doctor that I didn't feel well and that I thought I had the flu in January. When I told her that I haven't been eating and that I feel lightheaded 24/7 she became very concerned. I didn't even get to tell her all my symptoms. She automatically asked me if someone drove me and I said yes. She then tells me that she wants me to go straight to the ER and to get lab work done because she thinks that I am going through a lupus flare. She called the Hoag ER to tell them what labs she wanted them to do on me.

When I came into the ER, there was some confusion at first. But my doctor talked to the ER doctor and everything was straightened out. I was told that I was going to be there 3-4 hours since we have to wait for the results. I had x-rays done of my lungs. One and a half hour passes and I was introduced to Dr. Lee, who was going to being treating me in the hospital. He told me that only some of my blood tests came back and it was not good. I could tell from his face that something was wrong. I asked him, "That bad?" He said, "Really bad." On average a person's hemoglobin should be 11-13, mine was 7. This means I was anemic. My white blood count was extremely low too. An average person's w.b.c. should be around 500,000 and mine was only 100,000. Dr. Lee proceeds to tell me that they are admitting me and that I needed a blood transfusion. My gut feeling that I did not have enough blood was correct.

After he left, two nurses came in and started IV drips on each of my arms, one for the blood and another for the saline. This is the first time I've ever have two IV drips. Wires were attached to my chest  so they can monitor my heart. I was in the ER room from 9:45AM till 10PM while they were preparing a room in the hospital for me. At 10PM I was moved into a private room on the 6th floor with ocean views of Newport Beach. I was happy that I got my own room and I didn't have to share with a loud, psychotic, screaming person like last time. My mom, brother, and sister came to visit that night.

After they left I was not able to sleep at all. Every two hours my nurses would come in and take vitals signs. The phlebotomists would come in to take my blood too. My nurse changed my gowns many times because I was having night sweats and they were soaked through. Every time I tried to sleep my heartbeat would drop too low at 40 and the monitor would start screaming and it wakes me up. When the monitor screams my nurse comes to turn it off and check on me. I had to rely on the nurses to help me to the bathroom every single time that I wanted to go because they were afraid that I would faint. Besides I was hooked to the IV machine.

The next morning Dr. Lee visits me and he told me that I have a really bad infection that was at stage 2. They treated me with many rounds of aggressive antibiotics because they did not want the infection to spread to my kidneys. Mind you I have lupus nephritis (kidney disease due to lupus). They fear lupus was going to attack my kidneys. He said my hemoglobin (red blood cells) went up after the blood transfusion. Even though they gave me solu medrol, which is pulse steroids, it did not bring up my white blood count. Dr. Lee and my rheumatologist decided to inject me with a different medicine to see if my white count goes up.

My doctor told me that I am going through a major lupus flare. She visited me in the hospital and she told me that after my hospitalization I need a follow up appointment with her to see what we are going to do for my lupus treatment plans. They gave me many different treatments in the hospital for the flare, but it didn't really work to calm my immune system. She is concerned because my body is rejecting all the medication that I used to take.

I had a lot of testing done in the hospital: MRI, CT Scan, Echo cardiogram, Ultrasound of my legs for blood clots, and x-rays. These tests weren't fun. Some of them were very painful and I wanted to cry. I had a very bad experience with the CT Scan. The technicians couldn't start a IV drip on my arm so they had to use the one I have on my hand. However, they aren't suppose too. One of the guy said "that's dangerous man." While the other technician said, "we have no choice." The technician told me to hold on to the machine and he inject me with a liquid that would make the images visible to them. I wanted to scream and cry when he injected me; it was so excruciating and it lasted for a long time. I wanted to die. My last CT Scan wasn't like this; it was pain free. After being in the CT machine, I now know what it is like to be in a coffin. From the MRI, they found out that I have venous anomalies, which is the most common malformation of blood vessels in the brain. They are considered benign. Thank god I did not have any blood clots.

I didn't want any pictures taken, but my sister wanted to for memories. She said that all the other times I was hospitalized they didn't take photos so this time they are going to. You can tell that I was not having it.  

Being hospitalized is never fun. I had time on my hand to just think. I think subconsciously I didn't want to have a flare so I chose to ignore all of my symptoms saying that I have the flu. I was so stupid.  If my hemoglobin dropped any lower I could have died. One sign that a lupus flare is going to happen is when you have flu-like symptoms. I should have known better. I haven't had a flare in months and I was due for one. I was blindsided. After five days of being in the hospital I was discharged. Even though I was discharged my lupus is still flaring.

I thought being out of the hospital was going to be easier, but it is actually harder. I have to deal with reality and the situation that I'm in. I can't run, I can't hide from my problems even if I wanted to. The day after I came home, I took tramadol, a pain killer that I was prescribed. After taking it I started to feel  tired, heavy chest pressure, and sleepy. I couldn't keep my eyes open and I fell into a deep sleep.  When I woke up I still felt sleepy and tired. The deep sleep really scared me. I was afraid if I went back to sleep I won't ever wake up. I was so out of it. I freaked out and text my cousin who is a pharmacist. She told me that what I'm experiencing is the side effects. I decided to stop taking tramadol and I take ibuprofen instead. I could take oxycodone, but I don't want to become addicted.

Friday, March 1st I had my follow up appointment with my doctor. She told me that it's going to take a really long time before I get better. She also said I'm not out of the woods yet. My blood pressure is still low. My blood platelets is low too. I am sad to find out that my body is rejecting all the medications that I used to take for my lupus. I am so fucked! I usually don't use profanity, but I think the occasion calls for it. My doctor wants to put me on Rituxan, which is a biologic medication. But we have to get approval from my insurance. My other option is chemotherapy. My doctor told me that with chemo, I will have infertility issues in the future. She told me I most likely will not be able to have any kids in the future if I go on chemotherapy. I am very very devastated and sad when she said this. I have always pictured my future with kids. As a result, she's not putting me on chemo yet. She wants to see if Rituxan will work to stop my flares. It's just a waiting game now. She warned me that my hair will start to fall out in the next couple of weeks due to all the trauma and stress that my body has been under. It will eventually grow back.

Do I feel better now? I feel better, but not quite. I have my good days and bad. I have more shitty days than good days though. I get painful headaches, night sweats, fevers, and chest pressure. My butterfly rash is starting to come out. My body is still very shaky and jittery like a coffee addict suffering from withdrawal. I am so sleep deprived. Since I'm back on the prednisone (steroids) I wake 2-3 times during the night, sometimes more. I'm awake really early too. Some nights I only sleep 2 or 3 hours and I will stay awake the whole night. I think that lupus is currently attacking and destroying my exocrine glands that produce tears and saliva. Every time that I wake up, my mouth is extremely dry, there is no saliva and it feels like I'm dehydrated. I now keep a water bottle next to me so that I can take a sip when I wake up. My eyes are very dry too. Food is still a sensitive issue for me. I eat to make my parents happy. But I still can't taste food or it tastes metallic from the prednisone. My parents forces me to eat, but I just refuse to eat food that tastes bad to me. My mom even has to shower my hair for me, just in case I fall/faint in the bathroom. It's a humbling experience I can't tell you how much I love my mom.

My arms look like I have been abused or that I'm a heroin addict with all the puncture wounds and bruises. I still look like I don't have enough blood. My face is very pale and sometimes when I'm feeling sick it turns whiter. My eyes are so sunken in like a raccoon. My sister says that I look like I've aged 10 years. She says I even look older than my mom. My sister thinks I look fragile and that she can break me if she sits on me. The picture on the left does not really show the full effect. I look scarier than that on most days. My face is really white and my cheeks are more defined.

How am I coping? Not so well. I have to mentally and physically deal with reality. I don't want to be on prednisone. We have a love/hate relationship. I love how prednisone stops inflammation, but I'm scared of the weight gain, stretch marks, and especially the "MOON FACE." I'm going to be my cousin's bridesmaid in May and I don't want to have the moon face. It took me a really long time to lose weight last time. I don't think anyone realize how traumatic it is to go from being thin all your life to not recognizing the person in the mirror, discovering new stretch marks and hating what you see in the mirror. You have to go through this every time you have a flare. No matter how hard you try the weight doesn't come off. It's not healthy to always gain and lose weight. I've lost track of how many times I gained and lost weight.

I am an EMOTIONAL MESS. I am devastated that my body is killing itself. Am I afraid? Frighteningly so. I am scared that my next flare might cause severe organ damage. In the past 4 years I have been hospitalized 3 times for major flares. The hospital has become my second home. I've noticed that lupus always attack my blood. This is my 2nd time having a blood transfusion. Every couple of months I either get a minor or major flare. I hope that I get approved for Rituxan. I'm so sick and tired of being sick and tired. My body needs a break. Everyone tells me to stay positive and don't worry. But how can I not? I'm only human. I crack. Everyday I laugh and smile so that my family and friends don't see that I am hurting sometime. I am heart broken. It's so hard trying to be positive when you feel like your world is falling apart around you. I'm entitled to my grief. My landscape of my body, life, and friendships has drastically changed. I will have a new sense of normal in time. I feel a gamut of emotions, grief is a continuum on my good and bad days. It's ok to be sad, I'm happy most of the time.  When I first came home I cried at night. But I start thinking about the people that are less fortunate and have it worst than me and it helps with my grief. It makes me realize that I'm lucky. Besides since lupus is now attacking my exocrine glands; I can't even cry if I wanted to. My tears are dry.

I have so much guilt for causing my parents, friends and family concern. It breaks my heart that my parents, family, and friends feels hopeless and sad that they can't do anything for me. But provide support. I have to thank my mom, dad, sisters, brother, family, and friends for visiting me in the hospital, at home, calling, and texting to see how I was doing. Thank you, thank you!!! It means the world to me. I have to be patient. It's going to take time before I feel better. Right now I need to focus on my health and raising lupus awareness. I will always raise awareness for lupus. I will never give up.

If you are in NYC, you should really check out the "Faces of Lupus" window in Rockefeller Center Plaza. The S.L.E. Foundation put a face on lupus, with the unveiling of a 103 square foot display window on March 3rd at New York City's Rockefeller Plaza. Conveying the theme, "Be the Face of Hope, Be the Cure," the window draws attention to the often undiagnosed and dangerous autoimmune disease. The window will be up until the end of March. I really wish I could see this. I'm so jelly. Faces of Lupus

I think that it is necessary to educate people about lupus. Not a lot of people know what lupus is.

Lupus Foundation Of America :

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

·      Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.

·      Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow  rapidly and spread into surrounding tissues. Lupus is an autoimmune disease.

·     Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.

·     1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.

·     It is believed that 5 million people throughout the world have a form of lupus.

·     Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.

Imagine a disease that strikes without warning, attacks the brain, heart, lungs, kidneys, blood, virtually any organ. Imagine a disease with no known cause or cure. This is Lupus...perhaps THE prototypical autoimmune disease. Lupus can damage any part of the body and cause heart attacks, strokes, seizures, organ failure, and infertility. Lupus remains underfunded relative to its scope and devastation. 20,000 Americans and 500,000 worldwide die every year from Lupus. Today, most lupus treatments are toxic with devastating, debilitating effects. There has only been one medication in 50 years that has been FDA approved for Lupus. Not one lupus patient experience the same symptoms. We are all unique. I currently take medications designed for treating other diseases. I am asking you to donate to Lupus Research. It may help researches to develop new medications or find a cure for Lupus. If we can raise $25,000 within the next 25 days, one of LFA's generous benefactors will match each donation dollar for dollar. This is an opportunity for us to raise $50,000 for lupus research. Don't let me and others with Lupus become another statistic. Give today at www.lupus.org/match A small donation makes a big difference!

Your donations between today and March 30th will be worth twice as much. If we can raise $25,000 within the next 25 days, one of our generous benefactors will match each donation - dollar for dollar. This is an opportunity for us to raise $50,000 - enough to fund a lupus research project for the next six months.

Please, please donate at Lupus.org/match It doesn't matter how much you donate, it will be matched. If we can raise 25,000 by the end of March, a generous benefactor will match each donation.

This weekend is the the Team Life Without Lupus at the LA Marathon

LA Big 5K: Saturday, March 16, 2013
LA Marathon: Sunday, March 17, 2013 

Join the team and help fundraise for Lupus LA! Team Life Without Lupus at the LA Marathon

xoxo,
Kat