Saturday, September 12, 2009

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 PĂ©epem, 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.

Tuesday, September 08, 2009

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.