On The Lupie Side Of The Street

It's a Friday night but it isn't just any Friday night, it's a special Friday night. Right now I should be dressed up, my hair should be brushed, my make up should be gorgeous, and I would be surrounded by my friends. We would be celebrating the fact that I'm turning 24 years old (not technically until this coming Tuesday). Guess what? I'm not out with my friends, I'm at home, in my room, snuggled under blankets in my bed. This is not the way today should have gone.

I felt horrible about canceling on my friends. A lot of them had to move their schedules around in order to come. I was looking forward to having all of my friends together because my Birthday celebration is the only time it happens each year. I'm not having just a lupus flare, I'm genuinely sick, feeling about as good as a soggy, moldy Pop-Tart left in a kid's lunch box over summer vacation. After I sent out text messages and emails, I got a reply back from each person. Here are some of the things they said.

"It's ok sweetie. Get well. :-)"

"Do you need anything?"

"O god that bites. I hope u feel better soon!"

"*muah* its otay it just means u get to celebrate in a week or so! :-P Feel better, <3 you! Happy birfthday!"

"If there's anything I can do let me know."

"U being healthy is all that matters. Seriously. When you reschedule, let me know and I will be off:-)"

"That sucks! Hope you feel better soon!"

"We'll all understand. We're all MORE interested in seeing you better than in seeing you 2night. :)"

In that moment, I was reminded of a passage that I had recently read in a book.

"...there are two types of friends in the world, those who inspire you all that is great and good and those who'd prefer to get right down on their haunches and help out with the mud pies..."
~Julie Powell, Julie and Julia

I'm lucky, I don't have to choose which friends inspire me and which ones help me out with the mud pies. My closest friends do both for me! Today when they told me to feel better, I actually felt better for a minute or two afterward. When they asked if I needed anything, I knew that they would go to the ends of the earth for me. So while I'm missing my own Birthday party, laying in bed, trying really hard to get better, my friends are still supporting me all the way. To them, I'm more than a person who has a chronic illness, I'm their Erika. They love me for me and no matter what they will always stand by my side.

So, my close friends who had to miss out on an Erika celebration, please know this. I love you, I love each and every one of you. I am so unbelievably lucky to have you in my life. Very few people have as many amazing friends as I do. Every day you inspire me to be the best Erika I know I can be. Every day, whether you realize it or not, you help me. I know that we will always have each others backs. Nothing will ever stand in the way of our friendship because we love each other too much. Thank you for being so understanding over the years, I know it hasn't been easy for any of you. I hope one day I can give back as much as you give to me. You are each two types of friends in one, but remaining unique with qualities that I could only dream of having. You all are truly the best friends that everyone wishes they could have.

Dear Readers,
This is my 100th blog post. I can hardly believe that I have actually written 100 blogs. It seems like just yesterday I had this crazy notion to start this blog. It started out as a way for me to chronicle my life with lupus. Originally it was only supposed to be about lupus. But at a certain point I decided to do something that almost felt dangerous and forbidden. I opened up. This blog has been such a freeing, life changing experience for me. In the process of writing these little blogs, I've found pieces of myself that were lost over the years. This blog isn't about lupus, it's about me, all of me. Sometimes it's wonderfully inspirational and other times I break it down with the nitty gritty. That's life, it can't always be perfect and tough times make life worth living. Because eventually you overcome, you triumph, you win! Those rough patches show you who you really are, what you are made of, and that life is worth living.

Thank you for sticking with me throughout this journey. It helps me to know that people are out there reading this. I hope that some of my posts are helpful, that they impact you just as much as they impact me. I keep thinking that one of these days this blog will reach the right person at the right time and it will help them in ways I could never imagine. But for now I'll settle for the fact that this blog helps me along. I cannot express my thanks enough to each of you.

Here's a little entry that I hope is worthy enough for my 100th blog. Enjoy!

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Yesterday I went to a playground with a very close friend of mine and his precious daughter. The day was beautiful, the sun was shining, the air was warm, not in a stifling, but comforting. After feeling a bit under the weather for the past few days, stepping outside was a nice change of pace. It was lovely to breathe in the fresh air, to feel the gentle glow of the sun, to experience the slight breeze whispering over my skin. I feel it was just what the doctor ordered.

While I was at the playground, I did something I haven't done in ages, I decided to get on the swings. At first I thought "This is childish and stupid, why on earth would I get on the swings?" But then I thought to myself "Why the hell not?" So that's what I did, I got on the swing and I pumped my legs, just like I did when I was in elementary school. With each pump of my legs, I went higher and higher. The higher I went, the faster I went, and in that moment I remembered what it was like to be a kid again. Where nothing mattered except trying to go faster and higher than your friend who was next to you on the swings. When a skinned knee would only slow you down enough to put a band aid over it. Life was about little adventures that were imagined while reading books under the covers with a flashlight. It was simple, it was good, it was the way childhood should be.

I think sometimes we forget about the little kid inside of us. We automatically brush off our instinct to do something fun with the words "It's childish and stupid." Sometimes being childish and stupid is the best thing we can do for ourselves. It allows us to be free, our imaginations to soar, and in the end we find this inner peace that we once thought was lost. For me it's always the simple things that captivate me, that impact me the most. Those things help me to become a better Erika, constantly evolving but hardly ever taking the moment to realize why. I've realized sometimes you just have to let go, find that swing set, and fly. Soar through the air, feel the breeze in your hair, let your heart's worries fly away. Be a kid again, for just a moment let life be simple.

I don't typically talk politics, not on this blog and not in day to day conversation. It's something I don't like talking about, not that it doesn't interest me, but I don't like expressing my political opinion. But there is something I need to get out, it eats away at me every time I read the headlines. A government run health care system.

Yes, in theory, it sounds marvelous! Health care for everyone? Really? Oh it's just amazing! But seriously people, this can't work. First of all, it's not like this health care plan is going to kick in for a while, 2013 at the absolute earliest. Guess what though, we get to pay taxes on this future health care plan, possibly starting in 2010. So for three years we get to pay taxes on something that isn't actually helping us at the present time. In this grand recession where people are losing jobs left and right, when everyone seems to know someone who is unemployed, our taxes are going to be raised. Those of us who are fortunate enough to have health insurance will not only be paying for their current policy, but for an additional one through taxes. Here's another surprise, there is no guarantee a government run health care system will actually happen. It doesn't matter if you pay the taxes, there is still a chance it won't work out. All of that tax money will be gone, never to be seen again.

But let's believe for a moment that we willingly pay the taxes and the bill passes and takes effect. It doesn't matter if every person is taxed to the max, there simply isn't enough money for everyone to have health care. It's sad but it is also true. We are a nation who is debt because of frivolous spending and no one wants to take responsibility. How are we supposed to afford health care for all? It isn't possible so that is why there will be short cuts. You think it takes long enough now to see a specialist? Sometimes it takes up to six months to get in with a practice. Imagine how long it will take if the government runs our health care system? Furthermore, the government will decide if you even get to see a specialist.

Oh your heart is feeling a little off kilter? No you don't need a cardiologist and an EKG, you need your happy ER doctor to tell you that you just need to change your lifestyle. Never mind your heart is skipping beats, beating out of your chest, leaving you breathless, and causing you excruciating pain. You don't need to go to three cardiologists and have them all scratch their heads because they don't know what's wrong. You don't need an appointment with a cardiac electrophysiologist to figure out you have an extremely rare, dangerous in certain situations, and possibly fatal heart condition. You don't need any of that, what you need is to change your life style. That's exactly what is going to happen with government run health care. You won't get to see a specialist when you need to, you won't get the proper tests run, you're only going to get a half way excuse about why you feel the way you do.

Now this goes out especially to all of my chronically ill readers. Have you ever heard of end of life counseling? In this health care bill, it primarily applies to senior citizens whose health is declining. Every five years you will be counseled on how to live, or not live, the remaining time of your life. The focus isn't on getting you better, making you healthier so you can have a few more good years. It's about pain management and possibly teaching you the options on how to end your life sooner.

Cruel isn't it? But everyone wants free health care, right? That is part of how this program works, you get free health care while you are healthy. You're allowed the occasional case of the sniffles, a flu every now and again. God forbid you are diagnosed with a debilitating chronic illness, or an illness that is potentially deadly without proper treatment. I feel the end of life counseling will also extend to the chronically ill. The government is essentially saying "You're not as healthy as the rest of the general population, therefore you are disposable, good bye." That is how they will save money so they can attempt to provide some sort of health care to everyone else. The weak die off and the strong survive.

I admit, I voted for President Obama. I wasn't one of the "Yes, we can!" people. I was on the fence about who to vote for until I went to the polls. And now every single day I regret ever voting for him. It's because my life hangs on by a thread if this health care bill he proposed passes. I understand that lots of people don't have insurance, I might end up being one of them. But this government run health care system is not the way to go. Heck, let the people who have insurance keep their insurance. Let the government give out vouchers, create a tiered insurance policy that anyone can purchase. But don't fall for this health care plan that the government is proposing. It seems fine and dandy to those who are healthy. For someone like me though, I might as well dig my grave and hop in because I will not survive under this new plan.

I urge you to write to your representative, tell them that you are a voter, and explain your concerns. If change is what our nation needs, let it be the right type. Let it be the type that won't leave people like me out in the cold. Let it be the type that won't encourage your grandparents to give up their life. Let the change be something that allows us to live and say that we are not disposable, we are individuals, and we deserve more than this!

Here you can look up your representative using your state and zip code.

This morning I was in the shower and I was shampooing my hair for the second time, yes, I always wash my hair twice. I realized in that moment how much I love the way my hair feels during that second shampoo. How the tendrils of my hair intertwine with the sudsy white mass that covers my scalp. In that moment, everything feels so smooth, clean, and simply perfect. It got me thinking that I should make a list of my favorite things. In a way, it's a giant reminder of what I should be thankful for but I'm not always. Because in reality, not everyone has these favorite things, not everyone is given the opportunity to experience each one. So here it is, a blog entry having nothing to do with my life with lupus. Instead, a blog entry that has everything to do with my life and what makes me happy.

1. Shampooing my hair for the second time.
2. Remembering the taste of ginger ale on my tongue, how the bubbles tickled my mouth.
3. Perfumes with strong orange notes.
4. Freshly chopped cilantro, the aroma is intoxicating to me.
5. Water, I love the way water tastes, always pure and refreshing.
6. The texture of cold press watercolor paper.
7. Carr's Table Water crackers.
8. The giddy feelings I get when I receive a happy email, phone call, or text message from close friends.
9. Scrapbooks, scrapbooks make me very, very happy.
10. Scarves and fedoras, something about it seems classic to me. I could be terribly wrong? But who cares!
11. Green tea first thing in the morning.
12. Taking photographs of anything, it makes whatever the subject is significant in my eyes.
    
13. Music, anything goes. I love it when a song floats through the air, enters my heart, and sings to my soul.
14. Goofy dancing in the car, not while driving of course! Passenger dancing only!
15. Dreaming up recipes and seeing the finished product in my head.
16. Making cards and giving them to my friends.
17. Origami.
18. Reading a good book while listening to music.
19. Being in the kitchen, alone, and cooking whatever my heart desires.
20. Having Amy Winehouse stream into my ears via my iPod while shopping at Ukrops.
21. My t-shirt quilt.
22. Mondays.
23. Shredded wheat with unsweetened soy milk.
24. Anything having to do with Christmas. Crafts, carols, cookies.
25. The fingering that Regina Spektor does on the piano.
26. Lotion, I have incredibly dry skin.
27. Febreze and Lysol, if only the two could be combined?
28. Glitter pens, go ahead and call me a 13 year old girl.
29. Pandora Radio.
30. Thinking of Panama and everything I accomplished there. FYI: Used to be a missionary.
31. Penguins.
32. My closest friends who are always so dear to my heart. Ariel, Ashley, Michelle, Michele, and Jake.
33. When my Mom and I go shopping together.
34. The rare moment when my sister, Lindsay, and I don't fight.
35. Netflix.
36. Remembering the sweet, chocolate smoothness of a Galaxy chocolate bar melting in my mouth. Each taste captivating my senses.
37. My birthday.
38. Flowers, especially orange ones.
39. Fuzzy socks.
40. Crossword puzzles, especially when done with an amazing friend.
41. A violin and piano duet.
42. Snow, even flurries get me excited!
43. Being an industrious mouse.
44. The comfort of my own bed, it's fantastic. The right balance of softness and firmness, cushioning my body, cradling my aching muscles and bones.
45. Singing when I'm all alone.
46. Knowing that someone, somewhere, might be thinking of me, might be loving me, at the exact moment when I need it the most.

I haven't always been sick, I used to be a healthy, happy, and vibrant girl. I felt like I was a good person, that I was doing the right things, that I was who I was supposed to be. But life changes, it moves on, and it took me along even though I protested. I changed and I didn't have a choice in the matter. My body changed and yet my spirit screamed "No! Stop! Just let me be the old Erika for another day!" But my body didn't listen to me, it pushed on, pulling me through what felt like the depths of hell. My spirit wanted to turn around, to go back, it wanted to live the life it knew and loved. It was a fight between my body and my spirit, to this day it's still a power struggle.

So here I am today with a body that doesn't feel familiar to me and a spirit that feels trapped. Most days I feel like less of a person than everyone else. I can't do everything in one day that everyone else can. Even if I do manage to accomplish a couple of things, I get extremely tired and I have to rest. Everyone my age is out of college, with full time jobs, having their own places, and being adults. Yet here I am at home because I had to move out of my apartment. I'm living in my old bedroom and I'm almost 24 years old. I don't have full time employment, I barely have part time because of this economy. All of these things make me feel like less of a person, like I'm not good enough.

Having a chronic illness will do that to you, it beats you down to the point where you feel like you are nothing. It doesn't help when people don't understand and constantly defending yourself gets really old, really quick. It's frustrating when your body feels so much older than your actual age. I have days where it takes everything I have to get out of bed, to eat a couple of crackers, and to have a sip of water. It makes me feel like less of a person because I never used to be like this. I used to have an endless supply of energy and nothing would stop me from doing anything I had my heart set on doing. Yet these days even if my heart is set on doing something, my body usually stops me.

My birthday is quickly approaching and the one thing I truly want, I can't have. I wish I wasn't sick. I wish my body wasn't constantly trying to self destruct. I wish I could feel healthy for more than a couple days at a time. I wish I had more strength and energy. I wish I could live the life of the old Erika because then my spirit would be content. But instead I'm living at home, trying to find the strength to do the most basic things. At the end of the day I end up beating myself up for not being able to do everything that I had wanted to do. And whatever I did the day before, I always end up paying for it the next day. I go to bed thinking "What happened to me? How do I get myself back?" For now, I don't know. I don't know how to get myself out of this hole I'm stuck in. I know in reality I'll never quite get out, I'll always be sick, I'll never feel healthy for very long at all. I'll never live the life that I used to.

I wish I could be more to myself and to the world.

I love the fall and winter and I know it's coming when the morning air gets a chill. When the leaves change from their lush green to oranges, reds, and yellows that paint the trees. I know my favorite times of year are coming when I see pumpkins, turkeys, and Christmas trees all at once. I get so excited for October because my Birthday is at the end of the month. I get excited for November because I officially start the Christmas season on Thanksgiving day. Nothing makes me happier than Christmas, it fills my heart with such joy that I can hardly contain it. I look forward to January because it's a new year, another year for me to experience amazing new things. I love February because there is always the chance for a bit of snow. But what I don't like about fall and winter is the fact that I can get sick, really sick, one foot in the grave sick.

This year I am particularly anxious about the fall and winter. Not only do I have to worry about the seasonal influenza which has tried to kill me before, this year I have to worry about H1N1. Now I'm sure most of you are saying "Oh go ahead and get the H1N1 vaccine." Well honestly, I'm apprehensive about it all. The first round of vaccines are the mist, which contain the live virus. The second and third rounds will be in the form of a shot and they will not contain the live virus. I know the CDC is saying that the vaccine is being tested to the same standards as the seasonal influenza vaccine, but that doesn't set my mind at ease. Not knowing the short or long term side affects of this drug and how it could affect all of my preexisting conditions scares me. I know it's supposed to be safe but I think most of the testing is meant for your average child or adult, not someone who is immunocompromised.

I also have to think about what would happen if I don't get the vaccine. I know I am at major risk of getting the H1N1 virus if I don't get the vaccine. I am well aware that more than likely it will be the end of me, no matter how hard I fight. I don't want to die, I have so much life left in me and I need to share it with the world. I need to go out and do big and small things that will impact lives of others in ways I cannot currently imagine. I can't do that if I'm dead. I feel like I am being selfish by not wanting to get the vaccine. Because I also feel the vaccine could make my lupus and everything else, worse. I'm afraid I could have a horrible reaction that in fact could be deadly. I'm afraid of the side effects that could happen in a week, month, year, and five years. I don't want to be one of the first people with lupus to get the vaccine. I also have to remember that every lupus case is different and therefore I can't depend on how other people react to it either.

I feel stuck between a rock and a hard place. The fall and winter are my favorite times of year. But they also seem to be the times where I have to stare death straight in the eyes and say "Step off!" So while I have my Birthday, Halloween, Thanksgiving, Christmas, New Years, and snow days to look forward to, I also have to anticipate all the illnesses that come along. I'm scared, I don't like to admit when I'm scared, but I'm scared. I'm on the verge of tears knowing that in a couple of weeks I'm going to have to make one of the most important decisions of my life. Because this decision could definitely impact my life in ways I don't want to imagine. I know it's wrong of me to think this but I am too young. I'm too young to have to decide between a vaccine or a virus, especially when both could have such damaging effects. I feel like I can't win, I sound immature but I feel like I can't do this.

My life is going to change whether I want it to or not. All because of a virus and a vaccine. And it absolutely terrifies me.

This afternoon I was hanging out with a really close friend. While I haven't known her for a very long period of time, only four months or so, I feel like I've known her forever. We were sitting outside in the shade in front of a Starbucks enjoying our iced green teas. At some point during our conversation the topic of my health came up. She made two comments that really stuck with me throughout the evening.

"I didn't realize how sick you really are."

And.

"I don't know how you even manage to leave the house?"

Most people judge my sickness based on my outward appearance. Some days I do look physically ill, some people go as far to say that my skin takes on a greenish hue. Occasionally if I'm not wearing makeup, I'll notice how dark my skin gets around my eyes. My face will be pale and my lips will have no color. But most days I don't physically look sick, I put on makeup, I'll put a smile on my face, and no one would know unless I told them. Appearances can be deceiving, I may look like your typical 23 year old on the outside but on the inside I'm not. My body is older than my actual age. My muscles, joints, organs, and soft tissues are more damaged than someone who is in their 60's. People forget how destructive auto-immune disorders can be. Even with medication it doesn't control all of the horrible effects, it doesn't halt the progression of the disease. It's like putting a band-aid on a penetration wound, it doesn't do the job.

Once in a while I forget how sick I am because sometimes I feel as OK as I'm going to get. Sometimes I don't feel sick to my stomach, my muscles don't burn, my joints don't ache, my organs don't hurt, my head doesn't pound, my brain isn't in a fog, I'm not exhausted, and I feel as if I could conquer the world. Once in a while I can have a full day and forget that my body is as messed up as it is. I love those days, I cherish those days, those days give me a reason to keep going, not to up and quit because I am so tired of trying when life barely gives me a break. But I know that I can never have a break from life, if I break from life, that's it, it's over. I wouldn't have the strength to come back, I would fade away and be lost forever. So those good days make me want to push on through all of the pain and heartache my body causes me. They are little pieces of hope that I carefully cradle in my hand as if it were a butterfly, being careful not to hurt the wings. Eventually that hope has to fly away but I never forget the feeling it leaves in my heart.

When it comes to leaving the house, some days I don't. Some days it's all I can do to get out of bed and go downstairs to get a bottle of water. Honestly, some days I'm barely alive and I'm well aware of it, I'm hanging on by that little piece of hope. But not every day is absolutely horrific, most days are bad but I choose not to show it. I have to put on my brave face, not just for others but also for myself. Sometimes I have to fake it until I make it, I convince myself that if I look and act OK that I will eventually feel OK. Some days I have to leave the house and face the world with an open heart, no matter how much it pains me. If I don't leave the house I would be letting lupus win, I would be saying "You know what? You own me, you have imprisoned me." Lupus doesn't own me, I own me, I make the decisions and so no matter how scary life gets, I have to keep going. I have to step outside, face each day, and convince myself that I will be OK even though I'm well aware at the end of the day I may not be. This is my life, I can't change it, and the only choice I give myself is to manage it all to the best of my ability.

A lot of people think I'm extraordinarily brave because of this. I'm not, I'm no braver than any of you reading this. I'm sick but I am also lucky enough to have moments where I completely forget how screwed up my body is. I face a lot of daunting situations and my life is full of what if's? But it's a life, a life that a couple of years ago I was pretty sure that I wasn't going to have. When faced with a life that isn't exactly picture perfect all you can do is stand up and fight for each day. It doesn't make me brave, it makes me just like you. We all fight for each day, some of us in different ways than others. But we all have to fight in a way that is difficult for us. Bravery isn't based on the difficulty of the challenge we are trying to overcome. It's about reaching inside of yourself and despite being scared to death, you push on. You fight with all of your strength and even when you want to quit, you make that defining choice to keep living.

So no matter how sick I am, I'm going to be brave. I'm going to wake up each day and face the world as best as I can. If all I can do is make it down the stairs and up again, so be it because it was my personal best. If I have the ability to make it out of the house, I will. And if I'm really lucky, I'll forget for a moment how sick I really am. With a little hope and bravery I'll keep moving on. That is how I'll do it.