Another Hospitalization

The pain was unbearable. I could not sleep the other night (25th) because of how bad it hurt. I passed out for 2-3 hours but woke up at 5 AM with tears in my eyes. I went to sit in the kitchen while Mom was getting ready for work. When something hurts that bad, it's like I go into a panic. I'm not sure what to do, where to go, or even how to move. This always upsets my mother, who after watching me silently for a few minutes sighed and told me I need to go to the ER. This made me cry even harder but I knew she was right. It's been one week since I last went to the ER. I dread this but there is no choice. Damn. I quickly pulled on some warm pants and a sweater (the ER gets very cold) and she woke my dad so he could drive me there. I make him leave me though because I hate the idea of him just sitting in the waiting room. We thought I'd be out in a few hours and he'd pick me up when I was done. Little did we know....

I prefer to visit the ER after the shift change. There's a lot less confusion and people can answer your questions with less attitude. I'm serious. I arrived just an hour before the next one at 7:30 AM but luckily there appeared to be a small amount of patients waiting there before me- maybe 30. Even so, I wasn't called to the actual ER until four hours after I arrived. All the while I was in pain and the Tylenol the nurse gave me might as well be mints. Even in the back room, I was left waiting in the halls or in a small room until an actual doctor could see me. When she does, she informs me that I have a serious infection that requires IV antibiotics. Okay. I was thinking a few hours with a pole hooked to my arm. No. They wanted to admit me. *sigh* I really wanted to attend the UCLA Patient Conference on Saturday the 26th but...I could have refused to be admitted, but then the infection would have gotten worse and I would have ended up right back in the ER. The doctor pleaded with me, "Let us admit you and the medicine will kill the infection and you won't have to come back." I knew she was right but I still felt hopeless. The weight of constantly being sick and constantly being rushed to the ER threatened to explode in a rush of tears. And it delivered on that threat. They seemed to be startled by my sudden rush of emotions. They asked if they could help. Of course not. Unless they have a secret cure for Lupus. The doctors tried to talk to me but I was not in the mood for the kind doctor who really understands me and my illness. They don't get it. They can't. And I can't stop crying. And my foot hurts. The pain pills are not relieving any pain. I asked for better pain meds- NOT Tylenol- and I was given Morphine. That was okay.

I wondered if the fact that I was alone in the ER was why I was so sad. Usually I have a parent or my guy by my side. When Daddy finally calls to ask if I'm ready to go he was surprised to hear I was admitted. He brought me a light lunch and went home. I didn't want any company. Closing my eyes and crying the hours away seemed to be a better idea. My guy and I weren't on the best of terms so I hesitated on calling him but I figure I'd want to know if he was admitted to the hospital. He reacted just as I knew he would, like it bothered him. But he promised to stop in and see me after work. That didn't make me feel better. I waited and waited for an open bed upstairs and he finally showed up. He waited with me. He held my hand when the Morphine wore off and watched me cry in agony until a concerned nurse got the doctor's okay and gave me another shot. I just wanted to lie down. Time passed faster at that point and twelve hours after I arrived, my bed (with a window) was ready. Thank God. After all the intake questions were done, finally, I am permitted to rest. Seeing my guy has made this process a little easier but I was still so blue. That was day one, a Friday.

Weekends as an inpatient can be lazy and slow or interesting. Sometimes I have roommates that I never see behind their blue curtains but this time I was in a room with three other women either pre or post op. They are talkers and they attempted to draw me in but I had to decline. I'm not much of a talker when I'm sad. I just enjoyed listening to them and the stories they were telling each other. I spend most of the weekend with my mom. She visits me always and tries to cheer me up by bringing me magazines, books, a juice or two. Finally it is Monday and I am dying to find out when i can go. I hear maybe today. I hear probably by Thursday. I hear frustration in my voice as I ask who is correct. I hate this. I hate that I injured my damn foot. I hate that on a normal person they would have just gotten a bruise and a tender spot and went about their day. I hate that my kidneys are not working normally and that is why my feet were swollen in the first place. I hate that I must take Prednisone daily and this makes my skin thin so it's easier to injure myself. I hate that gaping hole I saw when i looked down. I hate that the stitches the first ER doc gave me didn't hold. They would have held but my feet swelled up again and made them burst off creating a hole again. I hate that I will always have a giant ugly scar on my foot to remind me how fragile my body really is. And I hate that I have to hate from a hospital bed where there is no privacy and no quiet, no cats, no dogs, no family, no boyfriend. All this hate can't be good.

When a fresh faced blonde doctor arrives and tells me my labs look great and that I'd be home by dinner today I want to laugh. I thank her profusely. She said they got to the infection before it wreaked havoc on my body. Wonderful! I'm not being sarcastic, I really mean that it is wonderful news. I have had quite the opposite experience before where the infection got so bad that it turned septic.

So that was my three days in the latest installment of my list of hospitalizations. I called my guy with the great news and he comes to keep me company as we wait for the discharge meds, instructions, appointments, etc. We even make it home by 7PM and it feels so good to be here. This hospitalization did not turn out to be as bad as I had feared and that is a small miracle in these tired eyes. I had put off coming to the ER because of what happened the last time (Date Night!- The waiting game in the ER). At least this time I was seen, treated, and I hope it does not happen again.

Date Night!- the waiting game in the ER

When my boyfriend said,"Let's go out tonight" I'm sure he wasn't thinking let's go out...to the ER. But that is exactly what happened this friday night. Ever since I injured my left foot and was left with a big hole on top of it, I've had to worry about it getting infected. I think it is.

I asked him to drive me to the ER and it being a Friday night, I knew we were in for a long wait. I originally injured it in August. The 14th to be exact. And it still has not healed. This is due to the fact that my feet keep swelling because my kidneys aren't functioning at 100%. So after the first ER visit when I got stitches, it was healing. Then my feet swelled and BAM! the wound reopened. And I was left with a giant hole in my foot. It won't heal also because I'm on Prednisone and that keeps it from healing normally. This sucks so bad. I can't wear normal shoes. But today I thought I should have it looked at. So I asked to be taken there for our date. He obliged but was not happy about it and let me know it every time he sighed so very loudly. I don't enjoy spending time in the ER either but I think that he thinks I do. I checked in and waited to be called. The nurse took my vitals and then I waited again, and waited, and waited. Apparently there were several gun shot victims in the trauma room. Okay, I can understand that that would be more important than my foot being infected but I was determined to stay and be seen by a doctor because as we all know, INFECTIONS KILL LUPUS PATIENTS. Not all of the time, but they do kill. They can kill. So I take these VERY seriously.

I sent my boyfriend to his car to nap because he kept nodding off next to me. Oh yeah, I was in pain by the way. All they offer is Tylenol until a doctor sees you. The pain was tolerable so I just popped a couple of Tramadol and continued waiting. My guy woke up and brought me some food to keep my energy up as I waited and waited. We'd arrived at 7 pm. It was now about midnight. I could have sent him home but I didn't want to be alone. So we waited and waited. Again he went to his car to nap and I stayed in the ER, waiting. I started nodding off and I actually napped right there in my wheelchair. I was exhausted. At 7 am, my guy went and got us breakfast. Okay. I'm beyond tired. I'm grouchy, cranky, moody, sleepy. And all that has been done for me is I was given Tylenol. As we chatted about what a great date we were having we realized it was past noon of Saturday. That's it. The only way that my feet would stop swelling up is if I kept them elevated...and here I was sitting in the wheelchair for 18 hours! My feet were so swollen I couldn't lay them flat on the ground. I could wait no more.

When I went to speak to the nurse about it I'm sure she thought I was being difficult and didn't want to wait my turn. BS. Waiting all that time was being detrimental to my health. Finally I said,"That is enough, we are going home." I could almost see my boyfriend jump for joy, for although he is as concerned about my health as I am, WAITING for 18 hours to never even having been seen by an MD is just ridiculous. So my foot is probably infected and I may have to return to the ER...but I can't wait anymore. I need to sleep. I need to elevate my feet. I need quiet and a massage on my lower back. What a date. Next time, I'll let him choose our destination.

Anita Johnston

On Sunday morning I logged onto my www.wearelupus.org site and read the shocking news that Anita Johnston had lost her battle with Lupus and passed away. She passed away on Saturday night, Aug. 29th around 7:30 pm Australian time. Anita was only 24 years old and lived in Australia. She leaves behind a fiance named Regan and two little dogs, Gucci and Louis Vitton and two cats, Bella and Sugar. Anita battled Lupus since she was a mere 15 years old. She fiercely fought to live a life where the lupus would not beat her. But due to kidney involvement, she lost that battle.
Anita was a spitfire. She was so positive and upbeat even when times were bad. She advocated strongly to all of us on the site to always stand up for ourselves. Anita was the first person I ever met that experienced the same rash I get when the lupus flares. It starts in the mouth region of the face and includes the lips, cheeks, mouth ulcers and nose ulcers. When I get my own flares, people always ask if I am having a Herpes outbreak. :| This really bothers me. I've even had Dermatologists prescribe me anti-herpes medication because they think it's herpes. *sigh* If an educated person like a doctor can make this mistake, it's no wonder Joe Schmo on the street thinks I have an STD. It's LUPUS!! Discoid or Cutaneous Lupus to be exact. I always felt like an outsider among my fellow Lupus warriors until I met Anita. She really understood because she was the same. She had a contagious smile and an upbeat spirit and we all will miss her insight and advice on the website. If you were lucky enough to know her personally, I extend my deepest sympathies. Beautiful Anita, you are an angel now.....


Anita Johnston
Sunrise January 26, 1985....Sunset August 29, 2009

Lupus

**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 strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Women of color are 2-3 times more likely to develop lupus. People of all races and ethnic groups can develop lupus.

Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe. Cutaneous refers to the skin, and this form of lupus is limited to the skin. Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected. Neonatal lupus is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb.

Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.

The most common symptoms of lupus, which are the same for females and males, are:

*extreme fatigue (tiredness)
*headaches
*painful or swollen joints
*fever
*anemia (low numbers of red blood cells or hemoglobin, or low total blood volume
*swelling (edema) in feet, legs, hands, and/or around eyes
*pain in chest on deep breathing (pleurisy)
*butterfly-shaped rash across cheeks and nose
*sun- or light-sensitivity (photosensitivity)
*hair loss
*abnormal blood clotting
*fingers turning white and/or blue when cold (Raynaud’s phenomenon)
*mouth or nose ulcers

Many of these symptoms occur in other illnesses besides lupus. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.**

For more information please visit the Lupus Foundation of America at www.lupus.org

To join a lupus community visit www.wearelupus.org

To see the Ad Council's 2009 campaign to increase Lupus Awareness visit www.couldihavelupus.gov

The Beginning

Pain is measured on 1-10 scale in the medical community. When a doctor/nurse asks you to describe your pain in terms of a number with 10 being the worst pain imaginable, most people say 10 but it's not really true. I've done it myself just to get some relief from the pain faster.

But I HAVE experienced the worst pain imaginable and it was more than could be measured on that tiny scale. In the picture above you can see some of the cause of that pain.

In the Spring of 2000 I was a college freshman. It was my first time living away from home and it was a very stressful experience for me. I've always been a good student and studying for college exams was stressful but tolerable. Living on my own was not as tolerable. There is no definite cause for the illness with which I was attacked, but stress is believed to be a major factor. The stress of this time in my life was so great! One day I was walking to my dorm after class when my legs suddenly gave out from under me. Weird. I hadn't tripped on anything. My legs just didn't want to stand anymore. My hair was falling out a little. I had these aches and pains that I attributed to college living. But one day I felt as if my breathing was different. The air I sucked into my lungs felt like dead air even when I was outside on the beautiful campus. And I also noticed a small red rash on my neck. The rash was what made me go get checked out by campus health. Looking back now, I see that this was when the Wolf bit into me. This was the point when I stopped being the woman I was just getting to know.

Like every other college student at the time I was looking forward to Spring Break. It was my first time going out of the country and having fun with my friends. I was a little nervous but mostly excited...except for that rash. It didn't want to go away. Campus Health had given me Prednisone and cream for the rash but it wasn't working. It bothered me but I thought it was no big deal and even though I'd been warned not to drink while taking the medicine, I knew I wouldn't listen. This was spring break after all. My body, however, did not agree with my mind. Our first night in the hotel in Mexico I was overtaken by the chills and a very high fever. I couldn't eat and had nausea and vomiting. I cried myself to sleep wishing desperately that I could call my mom to pick me up but I thought she'd be mad at me for having gone on this trip while I was sick. The next day I went to a pharmacy and the pharmacist gave me antibiotics. I felt soooo much better! That night I was able to go out and it was a blast! We danced and flirted with guys and drank like fish. When I finally stumbled to our room late that night I thought I was okay. Then I saw that the rash had changed. It was no longer small and red and itchy. I had bumps filled with a clear liquid on my neck.

Fast forward to a few days later. I'm finally home and my mom is so worried about the rash's evolution that she send me to an urgent care clinic. I go and they do the same that had already been done: Prednisone, cream, antibiotics. It wasn't working. And the rash was growing. It had taken over my torso and now my eyes. I could barely open them. At that point my mother was shuttling me from ER to ER trying to find the cause of this freaky rash. I heard diagnoses of all kinds but no sure one. Just a lot of 'possibilities'. I resigned myself to living with this and never knowing what 'it' was. Then the rash changed yet again. One day every point on my body that was affected with the rash was on fire. The pain was unimaginable. It would not stop. It burned and it was sharp and I couldn't stop crying. I'd been to see so many doctors with no real help that I was sure this pain meant I was now dying. I begged to die. It would be a relief compared to what I was being put through. The bumps had morphed into full blisters that would be hard for a day or two and then burst on their own or with a doctor's sharp needle. After they burst I was left with open lesions instead of blisters. Lesions that would take weeks and months to heal completely. And they smelled of rotting flesh. Nurses would always make comments as they came into my room to change my sheets. That made me feel bad, but the physical pain! My God, the pain was like no other. I questioned God daily. Why would he make someone suffer so much pain and not kill them? I was put on pain killers but they didn't truly help. Since the insurance company preferred to keep me out of the hospital, I was sent home with a prescription for Hydromorphone (Morphine in a pill). Although my mother carefully doled them out to me at the right times, I never stopped screaming- even when no one else could hear me after I had taken the morphine. In my head I was always screaming from the pain.

About two months after I noticed the rash I was able to see a dermatologist. This doctor saved me from going mad. He looked at me and asked if I knew what Lupus was. I'd heard of it before but was not familiar with the symptomology. I wondered how he knew just by looking at me. It turns out that just a month before he'd had a patient that looked just like me (in regards to the symptoms). He then took me back by asking me if I had noticed any other symptoms: Hair loss, muscle aches, pain in the joints, leg weakness, fevers, sensitivity to sun exposure, fatigue, mouth ulcers. Yes! I had experienced all these and more! He ran a few tests but pretty much at that first meeting he knew I had Lupus. Just knowing that this thing attacking me had a name was a relief. I laughed. I wasn't crazy after all. There really was something wrong with me. He also told me that there was no cure for Lupus. I would have to battle this illness for the rest of my life. There was no real medication to combat it but the symptoms might be controlled. The first drug I would take was called Prednisone. Funny right? The first medication that Campus Health had given me for my little rash was now the first medication I would take to battle this full blown disease. And the second was called Plaquenil. Lots of Lupus patients have taken this drug for decades and it has helped them so the dermatologist thought I might give it a try.

I cannot say that just by popping a few pills I was magically free of my symptoms. The rash, or lesions now, took months to heal on my skin. The pain took weeks to lessen. At least the physical pain lessened. The emotional pain is much more cruel and can last for the rest of your life. The medications seemed to be working though. My labs were showing promising results and my doctors gave me reason to hope. Although my life and health was different now they assured me that this did not mean my life was over.

I looked in the mirror when I was seventeen and I saw a young girl on the brink of adulthood. I did not feel pretty but I did not feel ugly. I felt attractive. I felt nervously excited about the future. After the Wolf bit me, I could not look in the mirror. It hurt too much to see a body so ravaged by this disease. It hurt to feel like I was a victim and not be able to cure myself of the feeling or of the disease. I felt truly ugly. I scared people. Maybe they thought I was contagious. Let me assure you, you will not catch Lupus if I hug you or if I touch you in any way. It is an auto-immune illness.

You may wonder why I keep saying that the Wolf attacked me. The word Lupus comes from the latin word for Wolf. In Aristotle's time the disease was recognized and the rash that accompanied it was thought to resemble the bite of a wolf. Now we refer to this rash as Malar Rash (butterfly shaped on the face), hence the term butterfly. I feel I am the Wolf's Butterfly. I am one of millions in the USA alone. We fight the battle against this disease daily. We are neighbors, friends, family, your store clerks, nurses, postal workers, butchers, librarians. Sometimes you may not know that we are being attacked by this wolf. You may not even know that we even have this disease.

One of my fears when I meet someone new is that if they find out about my illness they will see me differently. I've had enough of people looking at me differently. I tried to hide it in the beginning. It's been nine years. I fight Lupus, depression, my own worst thoughts, other's ignorance and I now try to present my Lupus as a fact when people meet me. I have Lupus but Lupus does not have me. Not anymore. My life was put on 'Pause' when I was eighteen. When I was finally able to push the 'Play' button on my life I was 25 years old. I finally accepted that my life was no longer going to be the same. That young girl I was getting to know as a woman, she died. She no longer existed after I got Lupus. But the woman I had become was somehow a stronger individual capable of fighting illness, bull headed doctors, ideas, ignorant nurses, truly dumb ass people, and my own desperate thoughts. After the Wolf bit into my soul I transformed into a different person and, I hope, a better woman. (*That dumb ass person was someone who told me in my hospital bed no less, that the reason I was sick was because I surely did something so horrible in my life that this was how God was punishing me. And as weak and vulnerable as I was, I believed her in that moment. She was the sick one for trying to make an already depressed, ill person feel even worse).

This was how it all began. And it is still an ongoing battle. There is still no cure for lupus but HOPE is the drug we all willingly give ourselves in addition to the daily regimen we take for our symptoms. We HOPE that a cure is on the horizon. We hope for a world where Lupus will be a distant memory. We hope for an end.