Happy New Year, 2012!

Dear 2012,

I greet you on your first day with a hope and faith that I don't think I've felt before. This doesn't mean that the sadness, hurt, and anger of all the years past has disappeared... not a chance. But you 2012, for you I feel something of an optimism.

This Lupus flare I've been experiencing lately has not shown any sign of going into remission. In fact, some days it seems to get worse. I was hospitalized more times at the end of 2011 than I had been in the last two years. But that's over now. That was 2011. I leave you in the past. And for 2012, I look into it with hope that this Lupus flare will quiet once more and I can start living again. I have faith that my kidneys will react positively to the medications I am now on and my body will stop swelling every day. I'll go back to my normal weight. I'll be able to resume my daily walks in the park with my dogs. I'll be able to resume my wifely duties. Yes, 2012... you're going to be a good year. I've started talking to the big guy again. You know that after 2008 I had little interest in prayer or God. I was so angry at Him. I chose to ignore him because of the pain I was in and that wasn't totally right. I cheated myself out of healing and I was too angry to see it. But lately I've started praying again. Really praying for myself, for my inner peace, for acceptance, for health. And it feels good. It feels right. I feel at peace when I do. 2012, I guess I've forgiven Him..not that He needs or wants my forgiveness. I'm only human.  But I needed that forgiveness. I needed it so that I could find Him again.

We all need something to believe in. If we don't believe in anything, do we exist? Physically yes, but deep down where it really matters, I think we'd be empty and apathetic and tired and bored with life. We wouldn't be real in our souls. Even atheists believe in something: That God doesn't exist. We all believe. And I believe in God, a higher power, something more powerful than me that gives me peace and I do believe I have stopped hiding from Him.

2012, you are full of possibilities, hope, excitement, opportunities! I look forward to everything you will bring. I embrace you and I embrace the life God has given me. I pray that we get closer to a cure for Lupus. I pray that you will bring great things to my family and all others. I hope that mankind will somehow learn to be less douchey and more kind. I pray that the abandoned animals of the world get to exist in heaven when their time to go comes. They deserve so much love for all the love that they give us, but sometimes people are too selfish to give them that. So I hope that they get to experience eternal love in heaven. I hope to spend more time with family, 2012. No one knows how long they'll be here on Earth. We should stop acting as if we have endless time and do and say all the things we keep putting off.

You're a historic year 2012. In particular because the Mayan calendar of time ends with you. They created a calendar that ran from their time all the way to you. No one knows why. Did they run out of room? Did the calendar maker get tired? Does the end mean that time will end? Our time? Our world? We don't know yet. It's better not to know. We shouldn't live as if we have an expiration date but we cannot live as if we're eternal. You're going to teach us a lot of things 2012. About time, beliefs, ourselves... so let's get started!

Yours,
Liliana

Medication Awareness

NEVER mix all of your meds in one bottle!

As a chronically ill individual I have to take numerous medications on a daily basis. There's medicine for the mornings, the evenings, medication that I take as needed. Pills, pills, and more pills... sometimes it's liquid, and sometimes I have to go to the clinic to receive my medicine through an IV.

For someone who wasn't used to this, when I was struck with Lupus my world turned upside down. My life became all about my disease, my pain, hospitalizations, doctor's appointments, waiting rooms, exams, labs, pharmacies, and medications. Lots of medications. It felt like every medication that could be given to me WAS given to me. I couldn't get out of bed in the morning without taking my medicine and I couldn't go to sleep without my medicine.

I hated that my normal life now had to revolve around medicines. But as much as I hated the new reality, I also knew that I had to find a way to make it work. There is no cure for Lupus but these medications work together to battle it as can best be done. I have to encourage everyone that takes multiple meds to please always be aware of what you are putting into your bodies. When you are on several medications for a chronic illness it's vital to be medication aware. Remember that you are your own best advocate. Years of taking all these medicines have taught me a few things:

1. Review your prescription in the doctor's office. Ask them to clarify any questions you might have about the prescription and ask what the medicine is being prescribed for.
2. Try to use the SAME pharmacy for all of your prescriptions. This ensures that the pharmacist will note if any new meds interact with your regular meds so that no harm can come to you.
3. If possible, drop off your prescription one day and pick it up the next day. Pharmacies deal with so many medicines and patients daily and sitting there waiting for them to churn out your order can make your day feel crappy. It's better to drop it off and return another day.
4. ALWAYS, ALWAYS, ALWAYS CHECK YOUR MEDICINE BEFORE YOU LEAVE THE PHARMACY!! Make sure that what's in the bottle is what the doctor prescribed. Make sure that the medicine bottle has YOUR NAME on it. If there's a mistake, let the Pharmacist know immediately!
5. Consult with the Pharmacist if you have questions about your medicines. This is what they are there for. Use them!
6. Follow the instructions exactly so that the medicine works as it is supposed to. And even if you have been taking the same medication for years, read the directions and warnings that come with the meds. Sometimes information is updated and you'll stay aware of it.
7. FOR PAIN MEDICINES If the prescribed dose no longer works at controlling the pain, tell your doctor as soon as you can so that the dose can be adjusted or a new medicine prescribed. Do NOT increase the dose on your own. This can lead to accidental overdose. 
8. Take your medicines at the same times every day. This ensures that the adequate amount of medicine is always in your body.
9. Report any serious side effects to your doctor and pharmacist. Your doctor may decide to try another medicine instead. And if it's determined you're allergic to a medicine it's very important that your Pharmacist is aware of that. This can save your life!
10. Paying for the medication: Hopefully all patients will have insurance that will cover their medicine but if they do not, try going to the drug maker's website. Sometimes they have programs that can help you pay for the medicine. 
11. If you have trouble remembering to take your meds there are tools and tricks you can use to help you remember: Alarms, Post-it Notes, 7-day Pill Holder, Logging your meds into a notebook with dose and time taken (if you have a smartphone, get this tool as an App!).
12. NEVER mix all of your meds in one bottle. Some people keep a day's worth of pills in their bags/pockets. If you can handle it, more power to you. But if you have trouble remembering things then mixing your medicines into one bottle can be confusing and possibly dangerous.

These are the most obvious rules to follow with medications but if anyone has other suggestions, I hope that they will share them here.
 
*NOTE: DO I REALLY HAVE TO SAY THIS? NEVER SHARE YOUR MEDICATION OR TAKE SOMEONE ELSE'S PRESCRIPTION DRUGS. It's against the law and can have deadly consequences.
 

What am I Waiting For?

When I started writing this blog it was to increase Lupus Awareness and share my experiences as a Lupie with my friends, family, and anyone else that was interested in learning about my battles with the Wolf.

I thought I could spread a little knowledge as well as share my experiences; but one day I stopped writing. I tried to start again but every time I just stared at my computer screen and wondered what the point was. I had no clue if anyone even read these things- my thoughts, or if anyone cared. Yes, you can probably see where I'm going with this. I had myself a months-long pity party. I allowed the depression that I'm going through take hold and just dictate my every move. For months and months I have felt as if my head is in a foggy state. The days passed me by so quickly and I felt like I was always moving, doing something. But I wasn't connecting. My heart wasn't there.

Recently the physical ailments of my Lupus have grown too big to just ignore. The pain has been unbearable and the tears feel like they'll never stop. I'm not just sad anymore. I'm actually suffering at times. But when it lets up... I feel so grateful! I'm so thankful to be able to walk and talk and touch and laugh!! Oh, how I laugh. :D  I can't spend my short time on this earth acting like I don't matter. I'm alive. I'm here right now and there's a reason for it. I matter, whether this blog is read by anyone or not: I MATTER. And I will NOT allow this Wolf to beat me down. Not anymore.

So if you're reading this, just know that I'm back. I'm here. I matter.

The Fear of...

I'm afraid. I'm scared of a lot of things in life- especially death, but lately I'm more afraid for a really special woman in my world. She doesn't like when I speak about her to the online world because she likes her privacy, but she's a big part of my life. I'm bound to mention her every once in a while. I will use a pseudonym for her from now on, but it won't be hard to figure out who she is. I just hope that if anyone reading this knows us and knows her that they do NOT mention anything I may write here. She knows I can't ignore her impact on me and will share some stuff in this blog, but she doesn't want it thrown in her face. I can respect that and I hope others will as well.

I'm afraid for her. She's always been the strongest woman I ever knew. She's small but powerful and to me, she's the most beautiful woman. When I was a child I feared upsetting her because she could YELL so very loud. She could make me cry with just a look. And during my teenage years she was my greatest enemy. Everything I did or said was wrong and everything she did or said was stupid. I couldn't wait to turn 18 and move out of her home but then I turned 18 and moved into my dorm at college and I was so upset! I cried every day and every night because I missed her so much. I noticed that my roommates didn't seem to feel the same loss I was feeling and I even dropped a lot of weight.

After I started showing symptoms of what was later diagnosed as SLE she was obviously very hands on in my care. She sought any material in Spanish that she could get her hands on. If it was about Lupus she had to read it. She paid people to take us to doctor's appointments. I knew she would have carried me if she had to so I could get treated. I got to know her as an individual with the biggest heart through the beginning of my illness. It was a side I had never tried to see before and I am mad at myself for denying that chance to happen much earlier. But now that things were as they were I would just accept and love as she was showing me to do.

I could list every single thing she did for me but I would never finish that list. She still continues to do so much for me- sometimes just by listening to my rants. I'm now at a point in life where the Lupus has calmed down very much. It's not in remission but it's not as aggressive as I have known it to be. Still, the fact of the matter is, I am more able to help her now with the little things she needs to do like laundry, cooking, cleaning, etc. They're not much but when I do them she tells me that it takes a big load off of her. We've also allowed our relationship to become stronger. She's one of my friends. A real friend, besides just being related to me. In recent years she was diagnosed with a chronic illness that has no cure but can be controlled- much like Lupus. She was in denial about it for a long time but finally she began to accept it and take her medications and take care of herself. I thanked God for that because as long as she wasn't accepting it, she wasn't doing what the doctor advised and she was going about as if nothing was wrong. I didn't want her to be sick. She had a tough time for all those years helping me cope with my illness but with her help I came to some understanding with the Wolf. I wanted to do the same for her. I'm not sure what changed her mind, I'm just grateful that it happened.

But this year a new challenge has come to us. Another health crisis and possibly, another illness. I see how tormented she is by the thought of having another disease and I see how the hope inside her sometimes slips away. She is depressed but acting indifferent to this thing. I know how afraid she is because I am afraid with her. I take her to the doctor's appointments and the labs and the pharmacy and I wonder if she felt these things when it was she driving me around from doctor to hospital to pharmacy. I'm doing my best to repay her back for all the love and strength she showed during my diagnosis. Sometimes she tries to push me away. She says I'm already sick and I already have so much to deal with and that the stress of trying to help her cannot be good for me. So what? There's no way I could leave her to do this on her own. Part of me is afraid she'll stop trying to get treated if I just leave her by herself. But I could never leave her to this by herself. I may not be much but I love her with my whole heart and I'll use every last bit of my energy and strength to be with her and help her in any way possible. There is no official diagnosis on this latest thing yet. We return for more tests and surgery later this month and I will be there with her. I'm very scared to lose her. I'll be lost without her. Sometimes I close my eyes and think about a time when none of this was real. We were just family and didn't have such serious cares. But back then we didn't have such a strong relationship. Sadly, it's thanks to all these health challenges that we are in these positions now, so thank you Lupus, Diabetes, and possible mystery illness. You made us stronger in our love. But I still fear all of you and what you could to to her.

Time Off

I've taken an extended break from my blog. I stop by and look at it every once in a while and I sigh. I feel like a failure. I started this blog to spread lupus awareness, to show people what one person's life with lupus is like, and because when I see my thoughts written down it helps me to make decisions in my life. But somewhere between writing drafts and publishing the posts, real life started to get in the way. I started having increasing health issues. Perfect thing to write about! But I had so little energy that just looking at my laptop made me want to lie down. When I finally recovered enough to get back to the blog, it was time for my surgery. I had to have my Right hip totally replaced due to years worth of Prednisone use in my battle against Lupus, which caused Avascular Necrosis in both hips. The right one was worse off so it was the first to go off. Ha. Joke. Yet another very important topic I should have written about. But the experience was so terrible I just wanted to block it from my brain. And more time passed. The holidays came and went. The LFA's annual Walk for Lupus Now happened and last year was especially great because all of my friends that I usually wear my "normal" mask in front of actually formed a team to support me in the walk. Such a kind and generous act by a group of people that I love and that I know love me, but that I try so hard to keep from my Lupus world. Why do I do that? I should have written of that. I moved in the past year and will have to move again very soon this year. That's hard on anyone but on someone with a chronic auto-immune disease? I had several attacks of what I can only describe as level 9 pain from what I suspect is Fibromyalgia. My panic attacks increased in occurrence. I constantly feel as if I will faint. All these things are going on and I just sit here. I want others in my shoes to know what I went through so that they have an idea of what can happen and what to do. I'm no therapist or life coach. I'm certainly no one's role model. I'm just me trying to figure out my life against Lupus. Maybe by sharing that I can help someone else out there in their battle too. I took some time off. But I'm ready to come back and tell my story. If anyone is out there listening, I hope whatever battle you are facing that you are able to dig deep inside and do it. And I hope that your battles don't stop you from living your life as you want to live it. Unfortunately I allowed my fight to take over and I gave in for a very long time.

I'm tired of not being the one in control. And right now I'm facing what may turn out to be a Defcon 3 Lupus flare. My kidneys may require Chemo yet again. I'm always tired. I'm always sad. My immune system is weaker than it usually is (Pretty weak already!). My Prednisone dose has been raised by more than 4 times the dose I was at. I'm stressed beyond all imagination! Our housing situation has gotten dramatic with TROs, court, screaming at people. The man I'm in love with and have been with for almost a decade has decided we may be better off apart...

I don't know what will happen but I know it will hurt. Yet this time I refuse to hide in my cave. I'll drown in that sadness if I do that.

Lupus FOG

I walk into the kitchen with the intention of grabbing something and returning to my room. Something? Something...hmmm. I have no clue why I came in here so I sit and wait. I don't even try to remember because that would only frustrate me. It'll come to me, or it won't. Not a big deal most times. I eventually remember what I wanted was a yogurt so I grab it and am on my way. This is Lupus Fog.

The most serious example of Lupus Fog that I have had could have been deadly. I wanted to make lasagna for dinner but I had a support group meeting to get to. I turned on the oven and got sidetracked talking to my mother, I asked my boyfriend a question, then I got into my car and drove away. Three hours later I pulled into my driveway, turned off the car, walked into the house and realized I'd never turned the oven off. The smell of gas was strong. Three hours. I have a houseful of pets and a boyfriend who was on the computer that whole time. They could have died if one little thing had been different. Three hours. I still shake my head in disbelief at that one.

I always had a great memory and that came in handy for school exams. It was as if I had a rolodex in my brain instantly recalling a person's name, address, telephone number, birthday. Now I forget someone's name not 10 minutes after speaking to them. Usually the lupus fog affects me in small goofy ways. I have found letters in the freezer, the remote in the fridge, the phone in the fridge. I tell the same person the same story over and over. Not all of us Lupies get this foggy brain. I have heard that some Lupus patients have their brains affected by the illness with serious complications like seizures and psychosis and mild symptoms like memory problems. I didn't think that I would be one of them but as I have found out, Lupus does not discriminate.

I wonder, is there a medicine that can be taken to treat this symptom? Does it get worse during disease flares and improve during remission? What clears the fog? Does Lupus fog ever disappear? I have so many questions...but once again the fatigue is winning its daily battle of my energy. I have none and I need to rest now.

Vicodin, the Pain Medication.

Pop a few to ease the hurt
wrestling with my mind, hoping this time it works.
When the pain gets this bad I need to medicate
the depression sets in, there is no debate.
Not wanting to start on this roller-coaster to addiction
I pray to God- help me keep my convictions.
Grin and bear it as long as I can
but of the suffering, I am NO fan.
Weighed the choice carefully on both sides of the scale
because I chose to take it does not mean I've failed.
This little white pill can damage as it heals
it can be hard to be mindful of the power it wields.
It's a double-edged sword once it enters the bloodstream
I hope not to get cut as I wait for the dreams.

The Masks I Wear

Today is Halloween, one of my favorite holidays: Candy, costumes, fun! When I was a young girl I enjoyed visiting the theme parks at this time of year. The frightful mazes were such a blast. And scary movies are my absolute favorite to watch. I enjoy being scared for a minute but knowing that the fright isn't real. I haven't gone to a theme park in a long time now. Just thinking about having to ride in my wheelchair in such a big place makes me so tired. So for the past few years I have concentrated more on decorating my home, my pets, and myself and giving candy to the trick-or-treaters. I like costumes. I like going to the store and seeing the wide variety of personas I could transform into. I don't have to be the Wolf's butterfly today. I can be whoever or whatever I want. I can forget who I really am. I like the scary costumes of monsters and killers. Scary costumes make me laugh. I want to forget Lupus today. I'd like to forget it completely but there are pills I must take and there is fatigue that demands to be acknowledged.

Halloween brings to mind the fact that I am constantly wearing a mask. The face that I present to the world is rarely the face that I see in the mirror. There I see a monster of pain, both physical and emotional, and I often just turn away. But being that real with the world would leave me raw and I believe that it would also frighten the people that I deal with daily. So I pretend a lot. Pretend that I am happy, pretend that I am fine and well. I pretend to be strong and that I can deal with whatever is thrown at me. There is no cure for Lupus, okay. My hair may not grow back, alright. I need to have one and possibly two hip replacements. Sure. I need chemo for my kidneys. Not a problem. There's my brave face. My "I can take it" face. My "This won't stop me" face. My "I'm fine" face. This is my public face. But in solitude the masks fall off. The gravity of it all hits me and it hurts. The tears feel like they will never stop. Not as long as I have Lupus. I'm not feeling sorry for myself. At least not for very long. I cry to release. The tears cleanse the pain and the hurt. I am as weak as I feel and I am lonely and mad. The anger begs to take over and all these emotions make me nauseous. The real me naked in the light is too much. Sometimes I can't bear to see it so I pretend for as long as I can. I have to be strong in front of my family. They expect me to have a handle on this by now. I'm afraid I'd disappoint my parents if they knew the truth. So I pretend to be as normal as everyone else even as the pain in my hip feels like it'll crack me in half.

I've come to believe that the wearing of these masks is a better option than how I used to deal. I'm a private person most of the time therefore I am very guarded with who I let in to my world. This is due to the fact that not only do I not know if random people will want to hurt me because it's fun to them, but because I don't want to hurt people. Once someone cares about you they will hurt when they see you hurt. I once dated a guy who broke up with me because he said he was tired of trying to break down my walls. And here I thought I was protecting us both. I realized I could continue on that road and risk losing out on some really great relationships or I could break out my mask collection. It's important to know that although I am pretending I am not trying to be fake. I don't pretend that I am a whole other person with an entire fake back story. I am still me...just a stronger, healthier, more capable version. I don't wear these masks for myself but they are important to me. Recently I have allowed them to fall off in front of someone. I'm sure he thinks that I am crazy. I went from laughing about almost slipping in front of my mother and closing my bedroom door to collapsing in a pile of tears in his arms. My boyfriend has to be the strong one for me in that moment. I allowed him to see me at a vulnerable state and I wasn't sure how he would react, but he held me until I quieted down. He saw the real me. He told me he wished he could erase the pain I felt. He wished he could erase the Lupus out of my body. From that moment I have tried to be my real self when I am with him. For the most part I am but I don't think he needs to hear about it each time my leg hurts. So I pop a few pills and smile. I will manage to get through this, mask or no mask.

I have to wear these masks in my daily dealings with people. People are mostly polite and will ask a question or two once they realize I am ill. Then you have those that hear I have Lupus and expect me to tell them my life story and (gasp) hug them and become instant best friends. Even though I just met them. Even some doctors do this. I understand they are medical doctors and if they are informed on it then they have a basic understanding of Lupus. But the docs that I only see once a year and the ones that are never the same one because it's a teaching hospital and they change rotation, these doctors always ask my medical history. They hear Lupus and it's like they expect me to fall apart. Instead I put on my smiling mask and tell them that I am just fine. The masks help with these awkward situations. They hide the true depth of my feelings from the world but as I take them off I'm learning that it's not so scary to look in the mirror and see me. Lupus is the monster, not me. I'm still learning not to turn away from my true self. I can use my masks but I can put them away too whenever I want. Maybe that shows a little strength after all.

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

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.