Chatty Kathy: May 2012

Happy Lupus awareness month! What are you going to do to bring awareness to this invisible illness? Most of you probably have heard of the term lupus in the media, but you probably don't know what it is. New research has shown that most Americans, 59 percent, know little or nothing about lupus and its devastating impact. This May for Lupus Awareness Month, the Lupus Foundation of America (LFA) is urging individuals nationwide to Band Together for Lupus Awareness to improve understanding of lupus, an unpredictable and sometimes fatal disease that affects an estimated 1.5 million Americans, 5 million people worldwide. What is Lupus? Lupus is an chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body).

It is important to spread lupus awareness. Many people don't understand how serious lupus is because people with lupus often don't look sick. Awareness is important so our friends and family may understand what we are going through and how they can support us. This year, the LFA is asking the public to Put on Purple for lupus awareness by wearing purple and lighting fountains and buildings purple and telling people why they are showing their support for all people affected by this disease. Put on Purple day will take place on Friday, May 18th. You can even Walk for Lupus Now, an event that raises funds to support the programs and services of the LFA. Walk for Lupus Now is an opportunity for the lupus community to come together, to learn how to better live with lupus, and raise awareness of the disease in their local communities.

Lupus is something that is very dear to my heart. After being diagnosed with lupus three years ago, it seems like I was surrounded by people with lupus. There's always someone's mother, daughter, sister, cousin, aunt, friend, girlfriend, boyfriend, son, uncle, dad, neighbor who has lupus. My mom's friend daughter has lupus, my former boss' friend died from lupus, my dad's cousin has lupus, and my cousin's wife has lupus too. Some celebrities that have lupus are Nick Cannon, Toni Braxton, Snopp Dogg's daughter, and Seal, who had a childhood battle with discoid lupus which left him with facial scars and hair loss. Some other well known people that have died from lupus complications are Charles Kuralt, an award winning American journalist; J Dilla, an American Hip-Hop producer and MC; Ray Walston, an actor; Michael Jackson "King of Pop"; Flannery O'Connor, an author, etc. Recently Shannon Boxx, who is U.S. soccer midfielder, spoke about being diagnosed with lupus. Many people have lupus or knows someone who has lupus, but we never TALK about lupus. Why is that?

I personally don't tell others that I have lupus because I don't want to be judge. I don't want to be seen as different. I hate it when people say, "oh she is sick or she is the sick one." It's really annoying when people ask my mom "which one is the sick girl" while looking at my sister and I. My other relatives don't know that I have lupus. I don't like being perceived as weak, incompetent or an invalid. I really hate it when others offer me pity. I don't want pity. I just want people to understand what Lupus is.

It's really frustrating when I have to explain to relatives what lupus is when they don't understand the concept of autoimmune diseases. It's so much more difficult having to explain it in Vietnamese. My mom always tell relatives that I have a weak immune system. I told her the other day that I don't appreciate her giving people false information about me. I don't have a weak immune system. I have an overactive immune system. Therefore, I am on immunosuppresants besides all of the other drugs I'm taking. This is the reason why I am very careful about what I eat. I avoid foods that boost the immune system. It may trigger my lupus flares. It's easier to tell people that basically my body is attacking itself.

The reason why I'm talking about Lupus is because I want to bring awareness to the issue. If I can help someone that is dealing with the same issues as me, I will be happy. Lupus affects each person in a different way. There are four types of lupus: Cutaneous (skin) Lupus Erythematosus, Systemic Lupus Erythematosus, Drug-induced Erythematosus and Neonatal Lupus. I was diagnosis with Lupus (SLE) on January 16, 2009. The type of lupus that I have affects all of my organs therefore, it's called systemic.

I didn't have any health problems while growing up. I was nineteen when I started to get symptoms. I was in a lot of pain. My leg and ankle was swollen (edema). My ankle was the size of an egg. It was very difficult to walk. With every step that I took, pain would shoot up my entire body. My bed was moved to the floor because I couldn't move. It took me a really long time to roll over, crawl on the floor, grab the bed post, try to pull myself up, and walk out of the room. Everything I did was painful. When I roll over in bed, pain would shoot up in all of my joints. I was tired all the time. I was extremely fatigue. Putting on clothes was really time consuming. My muscles were weak and I could barely raise my arms. My mom took me to our family doctor. He did a blood test and said I had arthritis. He gave me pain pills to take whenever I felt pain. It didn't help. At the beginning my parents, sisters, and brother thought that I was faking my symptoms.

In August I went up to Berkeley for my undergrad (I was a transfer student). Two weeks after I came up, I became really ill. I had fevers, chills, night sweat, and rashes everywhere for over four months. My lymph nodes were swollen (they were the size of golf balls under my chin). I had shortness of breathe without exerting an energy. I had stabbing chest pain. My hands and feet were becoming chillingly numb. I always felt cold; I never felt warm. I had arthritis pain all the time. Some days I wake up and my eyes and face felt swollen. My voice changed to a higher pitch. I felt like I had no air, so I would talk faster. I couldn't eat. I lost my appetite. Everything I ate tasted bitter and metallic. It hurt to open my mouth and chew. I stop eating too. My hair started to fall out. I lost a lot of weight. No one could help me. I was so tired. Some days I couldn't get out of bed to go to class. Other days I force myself to go. I managed to get really good grades even though I was feeling poorly. Putting on clothes was too difficult for me. I would just wear my clothes at night and go to class in the same clothes. It took too much effort to take off my clothes. I was becoming someone that I don't recognize. I went to doctors and they couldn't figure out what was wrong with me. They thought that I had strep throat. I took the medication for ten days. A few days later the symptoms came back. They said I had strep again, I drank the medicine again. It didn't help. They said I had strep for the third time and gave me another medication. It did not help. This went on for about four months. The symptoms never went away. It would just become worst. I was rapidly declining. I felt so alone and hopeless. I became forgetful. I had the lupus fog. I became clumsy; always dropping things due to my weak grip. I became paranoid. Everything someone did, or said would rub me the wrong way. I started to have hallucinations. No one understood what I was going through. I would cry all the time for no reason. I just wanted to feel healthy again. Looking back, I realized that I was very depressed. I isolated myself from my friends. I stayed on my back, in my room, wrapped like a cocoon in five layers of clothes, trying to get warm most of the time. I tried sitting next to the heater for many hours a day, but it didn't help.

When I went home for thanksgiving, the rashes covered my whole body. I went to a rheumatologist and he refused to help me. I couldn't understand how someone can be a doctor and refuse to help a patient. I never went to see him again. At this time I felt even more alone than ever. I felt even more hopeless. I became even more depressed, but I had finals to get through. I was really fragile. I felt like I would break at any time. I did. I cried myself to sleep many nights, wishing it would just end.

After my finals, I went home for winter break and I went to see a cardiologist. The cardiologist was very concern with my lab work. He talked with an infectious disease specialist, a hematologist and another cardiologist. They sent me into the hospital. My sed rate was almost 1500mm/hr. Sed rate is used as a measurement for inflammation. Normal sed rate in women should be less than 20mm/hr. They ran many tests while I was hospitalized. Everyday they would do blood tests on me. My arms were covered in black and blue bruises from all of the needle punctures. The worst part is the IV needle. They had to change it every 5 days. My veins are very tiny and they had to try many attempts before they can find the vein. I hated when they run the medication from the IV. It was so painful. It was excruciating. I had to hold my hands when ever they give me the meds because it takes at least two hours for all of the medication to run through the IV. The rheumatologist that refuse to help me, also refused to see me while I was hospitalized. He didn't come in. So the panel of doctors called in Dr. Panahi. Dr. Panahi, who is a rheumatologist, diagnosed me with lupus. I am so thankful that I had doctors who cared about my health and getting me better. The hematologist always visited me when he was off duty. He was the one that ask me if any of the doctors brought up lupus.

They were the ones that introduce me to prednisone (steroids). It's a love-hate relationship. My doctors told me that whenever I go through a flare I will be put on prednisone to quickly decrease the swelling, warmth, tenderness, and pain that are associated with inflammation. Prednisone do this by lessening the immune system's response. What I hate about prednisone is the moon face, weight gain and insomnia. Taking prednisone long term is not a good idea. There are many bad side effects. My doctors always wean me off of prednisone when my flare is gone. There is no cure for lupus. There is only preventive medication.

I took a semester off of school to follow up with my doctors. When I arrived back at school I felt better, but still not 100%. I had a really bad flare up in Winter 2010 and was hospitalized while in school. The doctors couldn't decide if it was lupus attacking my lungs or if I had pneumonia because on the X-rays it looks like the same thing. I stayed in the hospital for a week. I had to have two bags of blood transfusion because I didn't have enough blood. I weighed only 100 lbs. I looked and felt like an anorexic. I was mainly skin and bones. I was put back on steroids. I gained 40 lbs.

The worst part is that even though I have been off prednisone for almost a year it is really hard trying to lose the weight gain. I hate that I kept on losing and gaining weight due to prednisone. It takes an emotional toll on the body. I hated the way I looked (when I was a stick and when I was chunky). I don't want to ever have to take prednisone again. For the past three years I have not once not taken pills. I have to take a lot pills for the rest of my life. I guess it's the price for preventing organ damage. I am finally able to lose the steroid weight gain. I lost 15 lbs so far through exercise and healthy eating.

I am so bless to have doctors that care. I see my doctor every month or three months. It's important to see your doctor so they can monitor your progress and they can cater your medication to your needs. I am currently taking blood pressure medication for hypertension. My rheumatologist is concern with my high blood pressure. She fears that I may have kidney damage due to high blood pressure. If my blood pressure do not go down, she will have to give me more blood pressure medication. She probably will refer me to a kidney specialist.

Every month I get blood tests to monitor my lupus activity. I still get lupus flares from time to time. The last flare I had was April through September 2011. I could barely walk. I felt like an 80 year old instead of someone in her early twenties. It's not a glamorous life. Ever since being diagnosed, I have a new appreciation for life. Some days are harder than most. I have my good days and my bad ones. This is the first time in three years that I feel like my old self. I feel healthy.

To explain what my days are like, I am borrowing Christine's Spoon Theory by: Christine Miserandino www.butyoudontlooksick.com
You should watch the video here: http://www.youtube.com/watch?v=JPhh_pGuQXM

This is her article:

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

I wanted to share what having a chronic illness felt like. I am happy to be diagnosed early. This way I am able to prevent major damage to my organs. I feel like my old self again besides the high blood pressure. Having a chronic illness is not going to stop me from achieving my goals. My uncles told my parents to pull me out of school and make me stay home to be cured. How ignorant. There is no cure for lupus. I told my mom I am never going to drop out of college. Last year I graduated from UC Berkeley. It was one of the happiest moments of my life. I showed them. There are still many things I want to accomplish in my life. I am determine to do them all. I want to run the lupus marathon in NYC a few years from now.

Talking about lupus makes me realize that I am not alone. My former boss really cared about my health. He told me to never stop taking my pills because his friend did and he died from lupus. I don't understand how some people are addicted to taking pills. There are some days where I am so tempted to stop taking my pills. I hate the after taste from the pills, but I know that they help keep me alive. I also hate the side effects of the pills. I usually feel nausea (when assign a new pill), pounding migraines, dizziness, etc. The throbbing migraines are the worst-it feels like someone is squeezing my brains.There are lupus support groups out there if you are feeling alone. I've made friends from these groups that understands when I need to vent about sle. It's difficult for family and friends to relate when they don't know what's happening inside your body. Lupus is often known as the invisible illness.

It can take years for a person to be diagnosed with Lupus. Sometimes not all of the symptoms are there to be diagnosed with lupus. It can take up to 5-7 years. You have to have at least 4 out of the 11 criteria besides blood work to be diagnosed. My disease activity was really high, I had almost all of the symptoms including testing positive for the ANA test that's why I was diagnosed earlier than most people. One of the biggest lessons I learned from having lupus is letting go, going with the flow and to enjoy my life. There are times when I can't open things because my hand is swollen from arthritis pain. I learn that it's okay to ask for help. It doesn't make me weak.

It's important to bring awareness to Lupus and to fundraise money for research. I hope that you learned something about lupus from my post. If you want to learn more about Lupus you can check out: www.lupus.org If you have lupus or a chronic illness, please know that you are not alone. There are many of us that are going through the same motions. Find doctors that care about your well-being.

xoxo,
Kat

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