Lupus Tattoos

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.

Walk for Lupus Now in Los Angeles

Today at 6:00 am my alarm goes off. Having only slept 3 hours total the night before, I am not in the best of moods. Why am I waking up so damn early on Saturday I wonder, then I remember. Of course! It's the day of the Lupus Walk! That thought somehow gives me the energy to get up and shower. I dress quickly and gobble down a bowlful of cereal even though I'm not hungry. I don't want to feel sick while we're at the walk. I was supposed to drive me and mom to the event which is at Exposition Park in Los Angeles, but I'm not feeling too great. I'm dizzy and light headed and so exhausted. Luckily the night before, a family friend had asked to join us and thankfully, she'll drive us there. The drive is not very long as we live only about a 15 minute drive from the park.

Arriving at the park, I expect to see more people there. Perhaps I am still early. I immediately see my friends and fellow Lupus Warriors from my support group, Familia Péepem, Andrea Carrion and Alma Calleros. They excitedly tell me that my face is everywhere. lol. Having participated in the Ad Council's Public Service Announcement, I did a commercial for them and also my picture was taken to be used in print ads. I had yet to see myself in a public setting, but suddenly there I was. It felt odd. I feel famous for a minute as I realize that other walkers there recognize me and that just makes me laugh. It's a strange feeling. After turning in my offline donations, I am pushed around the grassy area so that I could say hello to my friends and everyone else. A volunteer whose name I forgot is kind enough to do this for me. I feel bad that I forgot his name, but God knows who he is and I know he'll receive all the kindness he shared back a hundred times. Thank you Mr. Tall Man. I'm actually only able to say a quick hello to my support group before I am placed on the concrete sidewalk. Since I am on my wheelchair for the walk, this just makes sense. That way when the walk starts I will be ready to roll. The only thing that I don't like about that is that I am left by myself for the longest time. Martina Ortiz, my friend who usually does the walk with us hasn't arrived. My mom is sitting some yards away talking to our neighbor. I feel out of place and in the way. Then I see the smiling face of my new friend Ruth Harris. We met on the website www.wearelupus.org and we'd made plans to meet. Since she hadn't been feeling very good I thought she wouldn't be able to make it, but there she was! She's beautiful and so very sweet. She has three children, two of them joined us for the Walk along with her mother. It's so nice to be able to meet her. I know we'll be great friends.

When the walk starts I attempt to push myself in the chair and I do...for about 5 minutes. My right arm starts cramping and creating a lot of pain for me. My mom has to take over. In her words, that was what she was there for. I still feel like I'm a burden. I hate that. Between my mom and our ex-neighbor, we are able to finish most of the 1 mile route. Halfway through the route, Martina calls to say she has almost caught up to us. We'd done the Walk together since the beginning and I felt sad when I thought she wouldn't do it with us this year. I'm more than happy she was able to make it. We finish the mile together to the sounds of cheers from the volunteers. We take so many pictures! I love the memories and the pictures help when I forget things. I heard later that Top Model Mercedes Yvette had been there. She also fights Lupus daily. I have pictures of her with my friends Wendy Rodgers and Shammeer Jattir. I wish I had been able to meet her, but since I can't get on the grass without help, I am not able to. :( Overall, it was a great day. I saw my friends smiling and strong. My mom never lets me down. And I met some new people.

I love that my friends were were able to volunteer and help with the Walk stuff before we got there. Alma and Andrea and all the others...you all rock for being able to help out. We all appreciate your hard work. And CHRISTI! Christi Rauth organized the whole thing. Her mom has Lupus and she's been involved with the Los Angeles Walk since the beginning. Her energy and dedication really inspires me. I can never thank her enough, not just for the Walk, but for the countless times I e-mail her with a question and she responds almost immediately. We need more people like her helping us spread the word and looking for a cure.

I always wish that the Walk would get more exposure so that more people could attend and raise money for our cause. It's a very important cause not because we have Lupus, but because more people probably have Lupus but aren't aware of it and its symptoms so they're suffering and not knowing 'why' right now. I want the public to become more aware of Lupus. More people have Lupus than AIDS, Cerebral Palsy, Multiple Sclerosis, Sickle Cell Anemia, and Cystic Fibrosis combined! We need more people to be aware. We need more funds to help support the programs that help us. We need more funding for research. We need to find a cure. We fight Lupus daily. I want that fight to end with Lupus being knocked out for good.

I hope that next year the Walk can be a bigger success. I plan on joining the committee for the next Walk, but I had planned on joining this years committee and I was not able to. The flares prevented me from doing very much this year. Here's to hoping that next year is better and that more people will know about the Walk next year. Let's all do something to increase awareness. We can do it together.

I want to again, thank all of the wonderfully kind and generous individuals who donated time and money to our cause, the Lupus Foundation of America, to increase awareness for Lupus and funds for the programs that help Lupus patients. Your benevolence is appreciated by all Lupus patients, their families and their medical teams. With your help, one day we will find a cure. There is HOPE. From the bottom of my heart, I thank you for your concern and support. I would hug each and every one of you if I could! You're more appreciated than you could know.

Do you work here?

"Hello Liliana. Nice to see you again. Let me check your latest labs...and I see here on your appointment history that I just saw you two weeks ago....(pause)...and you've had appointments with 3 other clinics in this short time! Whoa! You must really like this hospital! Gosh, you're here so often that you might as well get paid! It's like you work here, huh?"...this is what my doctor told me once at a follow-up appointment. He didn't mean it in an offensive way. He was making a joke out of the joke of a reality for me, numerous doctor's visits every month.

There's a mental disease called Munchausen's Syndrome where a person exaggerates or creates symptoms of illnesses in themselves or their child/children in order to gain investigation, treatment, attention, sympathy, and comfort from medical personnel. Sometimes I wish that this is what I had instead of the cruel Lupus that lurks inside of me. I do not enjoy driving to the doctor's office (or lately, being driven to) every few days. I take no joy in the needle pricks to test my blood. I find no comfort in the sterile environment where I spend most of my days. Yes, I am glad for the medical attention to treat the symptoms that ail me, but how I wish that it wasn't real. I know that Munchausen's is a very serious condition also, but I think that it would be more treatable than my Lupus.

The doctors and nurses at that hospital have saved my life more than once. I am appreciative of all their hard work and their genuine interest but if I never had to see any of them again it would be an answer to my prayers. It would mean I was healthy. I'm there so much that when I have a week or two WITHOUT any doctor's appointments I feel totally lost. It's like I have no purpose. I get very antsy and I try to relax and enjoy the fact that I don't have to be somewhere at a specific time, but I can't. I hate that I have gotten so used to doctor's visits. When I go to the lab there's usually someone there who doesn't require frequent blood draws and they'll make a face when they get poked or get really pale when they see the blood. I envy those people. I don't even notice when the phlebotomist pricks me because I'm so used to it. No one should get used to this. It makes me angry. It makes me sad. I'm at a loss as to what to do because there is nothing I CAN do except fight it. Fight the Lupus. And just keep going to the doctor's office.

Sometimes, though, I'm glad that I am there so much. I've gotten to know most every place in that hospital. And I have met some really incredible people, staff as well as patients. Some of these I've met in the waiting rooms, but some I've met when they needed help. So when I see a confused looking face in the crowd of people at county hospital, I ask if I can help. I like showing them where they need to go. I might as well be useful, right? At times like that, I feel like I DO work there. It's nice to be able to help somebody, even if it's something as small as showing them where the elevators are located. And it's an ice-breaker when meeting new people

I may not officially work there, but in a way I do work there. I work to keep myself in as best health as possible with all the complications of Lupus. All those doctor's visits and pharmacy trips and Lab appointments, they're the job I must complete to stay 'healthy.' I just HOPE that one day it will no longer be necessary because Lupus will be a memory. And the Wolf will bite no more. One day it will no longer be an untreatable illness. There WILL be a cure. I don't know who I'll be then, but I hope that at least I'll have gone through this whole experience and come out the other side a stronger woman that has somehow made a difference. I want to one day no longer be this Wolf's Butterfly. I'll settle for being just a butterfly. Grateful to be alive and healthy.

my final infusion (chemo)

hallelujah! »^..^«


My last chemo infusion! At least for now.
Hardly slept last night.
Working hard to raise money for the lupus
walk on September 12, 2009.

Visit donate.lupus.org/goto/lilianaguillen 
to make a secure online donation.

The MD thinks these infusions will help my kidneys. 
It'll take some time to determine if it worked.
I can't wait! I really want my kidneys to work
and would love to go shoe shopping.
Love, Lilykat  



--Message sent from my mobile

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