The Power of a Mug

8:49 PM Posted In , Edit This 1 Comment »
Every couple of years I like to get a new travel mug. My beloved old one with penguins in a snow scene that is printed on a metallic background is getting cracked and leaky. As much as I hate to see it go, I also dislike pouring hot tea on myself on accident. Luckily the great breaking of the travel mug coincided with a holiday that I know and love, Christmas. For the past few months, I've been lusting after a particular travel mug found at most Starbucks locations. Being in the land of the unemployed made the mug seem just out of reach for me. I felt like it wasn't meant to be for me but maybe for someone else?

In sub-Saharan Africa, 22 million people live with HIV. 22 million people, can you even begin to think about that number in your head? It's huge, it's mind boggling, but it isn't just a number. Each number stands for a person, a person with a heart who is holding onto their last bit of hope. They don't have the resources like we have to go to a hospital, to get medication, to stay alive for another day. I understand that our health care system is currently in shambles, but what the people in Africa are enduring is far worse.

I made the decision this evening that the travel mug that would make me the happiest would be the Product (RED) travel mug from Starbucks. I understand that only $1 US dollar goes towards fighting AIDS in Africa, but it is better than nothing. For 40 cents a day, two antiretroviral pills can be provided to a person living with HIV. In reality, my travel mug provided two and a half days worth of treatment for one person living with HIV. Two and a half days, big deal right? Well think about all of the other Product (RED) items that are being purchased around the world? Those dollars add up, they can provide a person with an extra day of a healthy life. Being chronically ill, I understand the importance of having one day when I feel completely healthy. I cannot imagine the pain and suffering a person endures while living with HIV, especially not in Africa.

My contribution may be small to this global effort, but I made a conscious effort. I decided that I could purchase any travel mug in a certain price range, but I chose to purchase this mug. I know my donation from my mug will not bring an immediate end to the AIDS crisis around the world. But I hope that with my tiny donation, it will help to keep one person alive for two and a half days. I hope that other people's purchases will help to keep that one person, but other people alive for many more days. Maybe, just maybe, one of those people will be able to come up with an idea, changing the rules of this cruel game, and maybe save the world from this global epidemic.

I may not be saving the world, but I could be saving the one person who could save the world.

Bisous!
Erika

I Feel Purple Today

3:53 PM Posted In , , Edit This 3 Comments »
Last night I had a great conversation with my friend on the telephone. I was laying in bed, frustrated about how I felt, and how most people don't understand. When I look completely healthy and radiant, it doesn't mean that I am. It's hard enough for most of the general population to understand an auto immune disorder such as lupus. But it's even harder when most days when the person, such as me, doesn't even look sick. I tried to explain to my friend whom I'll refer to as M&M, what it really means when I tell her how I feel. When I say I feel "OK" for a healthy person it would be their version of a sick day. If I were to say "I feel sick today" for the average person, it would mean they would feel like death warmed over. Occasionally I mutter the words "I feel like death warmed over." A healthy person would have been six feet under for six months at that point.

99.9% of the time, I tell people I feel "OK." Why? Because no one wants to hear my sob story about how my joints hurt, my muscles ache, and my organs are burning. No one wants to hear about how exhausted I am but I can't sleep. Don't even get me started on everything else that is wrong. A sob story is only good for one time and I had to use mine up a long time ago. Plus if you say anything other than "I feel OK" you get asked a lot of questions. There is nothing else in the world that bothers me more than a nosy person. Most people don't ask questions because they care. They ask because they want the inside scoop, they are curious about my health, and not in the right ways. So there are lots of people on this earth, people I work with, people I go to church with, friends, family, who all think I'm "OK."

Maybe it's because I feel like I don't have a right to complain? My life could be a heck of a lot worse, it has been a heck of a lot worse. I consider what I'm going through right now as an upswing. Sad but true. If I say "I'm OK" I'm not complaining but I'm not really telling the whole truth either. There is no easy way to explain how you feel when you have lupus. There is no way to force people to understand either. Some days I don't even understand how I feel. I can go from being somewhat OK to being sicker than a three legged broke neck dog in a matter of minutes. But I don't have the right to complain, I'm healthier than I have been. There are sicker, sadder, poorer, and more alone people in this world than me. I'm lucky.

My friend M&M came up with an absolutely brilliant idea last night. I should start wearing a mood ring, it would make this whole business of telling people how I feel much easier. I wouldn't have to go through the explanations of how I'm feeling and how lupus is affecting me. I wouldn't be lying either because the color on the ring would say it all. Someone could say "How are you feeling today?" Being the amazing person that I am, I could look down at my mood ring and say "Actually, I'm feeling quite purple today." Of course I would get an odd look and a "What does that mean?" I could say "It means just that, I feel purple today." See, I'm not lying because I'm saying exactly how I feel because the mood ring is supposed to know exactly how I'm feeling.

I know it sounds goofy and odd but when you are faced with a disease that doctors have a hard time understanding, you need that sort of fun. When you have to answer the same questions and lie through your teeth because no one likes a sob story, it's time for a fresh new idea. Sometimes the only way I can get through living with this disease is by being quirky. So if wearing a mood ring will make M&M and I laugh, if it will make people puzzled, then that is what matters. Life is too short not to laugh, not to make memories with those you love. Life is too short not to find happiness in the little things. Life is too short not to be honest.

So if I say "I feel purple today" you might want to back up a few steps for the sake of your shoes.

Bisous!
Erika

Christmas Hope

8:48 PM Posted In , , Edit This 1 Comment »
I am quite possibly one of the biggest Christmas fanatics you could ever meet. I'm the type who starts looking forward to Christmas in October. I'm one of those people who puts up the Christmas tree and decorations on Thanksgiving day. I love Christmas music and I listen to the local radio station that plays it constantly through Christmas day beginning on Thanksgiving. I enjoy Christmas crafts, like making my candy cane reindeer. I love to hand craft the Christmas presents for my friends and family. Christmas for me evokes so many wonderful feelings that fill me with joy.

For me though, Christmas isn't really about the anticipation, decorations, music, crafts, and presents. Christmas has such a deeper meaning to me, for me Christmas is about hope. Christmas gives me a sense of hope that I try to carry with me all year long. I hope for Christmas when I feel like I am trapped in my body of sickness. I hope for Christmas when I feel that nothing in my life is going right. I hope for Christmas when I need my heart to be filled with joy right at that exact moment. The thought of Christmas has carried me through many horrible times that I probably wouldn't have survived without my Christmas hope.

This year the only present I truly want is the gift of having enough hope to last me until next Christmas. I need hope to carry me through the rest of the winter when I tend to get my sickest. I need hope to carry me through the spring when I am looking for a sense of renewal in my life. I need hope in the summer to give me the energy to enjoy the extra time I get to spend with friends and family. I need hope in the autumn in order to truly appreciate the beautiful colors that the fall foliage brings. I especially need hope at Christmas, hope that the excitement for it will never fade year after year. Christmas is the one time of year where I truly get excited about life. I'm thrilled that it is finally my favorite time of year. I'm ecstatic that because of all the hope I am filled with I feel the amazing feeling of joy.

So instead of coming up with a Christmas list a mile long, try to think of the one thing that is going to carry you throughout the year. What is the one thing you absolutely cannot live without? I'm fairly certain it's not going to be a flat screen television, a Blu-Ray DVD player, or a video game console. I'm pretty sure that it is going to be something that is felt in your heart, that is unique to you, and you need it more than you think. Let that one thing carry you along through the year, comfort your soul in hard times, bring peace to your life always, and let it fill your heart with joy forever.

Happy Holidays to all of my blog readers!

Bisous!
Erika

Friends Come In Two Types

6:21 PM Posted In , , Edit This 2 Comments »
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.

Bisous!
Erika

Let Life Be Simple

1:57 PM Posted In , , Edit This 0 Comments »
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!

--------------------------------------------------------------------------------

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.

Bisous!
Erika

Standing On My Soap Box

11:50 AM Posted In , , Edit This 0 Comments »
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.

Bisous!
Erika

A Few Of My Favorite Things

4:17 PM Posted In , , Edit This 1 Comment »
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.
Bisous!
Erika

Wishing To Be More

11:33 AM Posted In , , Edit This 1 Comment »
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.

Bisous,
Erika

Stuck Between A Virus And A Vaccine

6:24 PM Posted In , Edit This 1 Comment »
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.

Bisous,
Erika

That Is How I'll Do It

7:11 PM Posted In , , , Edit This 4 Comments »
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.

Bisous!
Erika

I'm Not Normal

6:32 PM Posted In , Edit This 1 Comment »
This past few weeks have been nothing but a giant reminder for me, that I'm not normal. It's been the little things that have really gotten to me. It's the foods I can't eat, like anything sugary, acidic, or fried. It's the activities I can't do, like staying up late and partying with friends. It's the feelings I get throughout the day, one minute I'm as fine as I can be and the next I feel like death warmed over. Besides, I don't know any 23 year old who gets excited over lab work. I'm not normal.

The funny thing is that I used to be normal, well as normal as one could be. I was a enthusiastic and intelligent college student. I worked, I volunteered, I had relationships, looking back on it, I had the world. But now I hardly ever get enthusiastic over anything because I know in a second that it could get ripped away from me. I'm not as intelligent as I once was, lupus has zapped my brain making it like a bowl of pudding. I had a job and I could work double shifts in restaurants and I wouldn't even get tired. I loved volunteering, especially with youth and the underprivileged. I had relationships, I lived and loved and I was loved back. I had the world in my hands but then in a heart beat, it got ripped away from me. Three years ago my life changed and I was no longer normal. I was sick.

Now I'm the healthiest I've been in three years. Yet for some people in my life, I don't seem very healthy. But they also didn't know me when I was at my absolute sickest. In a way I am glad some of these friends didn't know me one or two years ago. I've saved them a lot of pain of having to watch me deteriorate. It's even better because some of these people didn't even know me when I was healthy. They don't have to mourn the loss of the Erika of days past. Yet every day, somehow I end up mourning a little piece of me that has died. And it feels like every day a little piece of me dies. It's the little something that I can't do and for the life of me, I can't get back. So I'm thankful that the few new friends I have don't have to miss the old me. Sadly, I do and I can't go back in time and change it.

So here I am, with my life that isn't normal and will never be normal again. Maybe one day the reminders won't be as frequent. Hopefully one day it won't disturb me as much as it does. Because it's the little reminders that make me want to shed a tear. In those moments it's all I can do to stand there with a smile on my face and tell you "Everything is OK." Inside though, I'm breaking, I'm standing in front of you and falling apart. Maybe because everybody thinks I am so "well adjusted" that no one notices. The funny thing is, I never feel well adjusted and in way that would make me normal, I'm not normal.

Bisous,
Erika

A Life Remembered

8:10 PM Posted In Edit This 1 Comment »
One of the not so fun parts about having lupus is the inability to remember much of anything. I can't tell you what I did two days ago. I have a general idea because my days pretty much seem to be the same. But I don't know if I hung out with anyone in particular or did anything special. Yesterday, I received a letter in the mail from a relative who I used to be very close to. In the letter she wrote down all of her favorite memories of me. Stuff I don't even remember! It looked as if she wrote the letter a long time ago but she never got around to sending it. I understand why, our relationship has been very tumultuous over the past few years. The letter has inspired me in a way to write down some of my memories, the stuff I remember. I figured since most people tell me about how they like the fact that I'm so real, I'd share these personal tid bits with y'all.

Memory 1:
I remember being about seven or eight years old. I was at my Grandparents house and it was probably early August. I was in the kitchen with my Grandpa, I think my Grandma and my sister were out somewhere. My Grandpa decided it would be fun if I baked a cake, by myself but of course with his supervision. In case you didn't know, I've loved cooking from a very young age, a lot of my memories revolve around cooking. My Grandpa got out a box of cake mix (yes, I cringe now because I used boxed cake mix), a mixer, the oil, eggs, bowl, spatula, and pan. I read the directions on the box twice because I didn't want to mess up the cake. I wanted to make my Grandpa proud of me. I added in the ingredients, combined everything with the mixer, and then poured it into the pan. My Grandpa put it into the oven for me, I suppose he didn't want me to get burned. I can still smell that yellow cake, as simple as it was, it produced such a sweet, enticing aroma. The scent wafted through the kitchen and eventually throughout the house. When the cake was done, my Grandpa took it out of the oven and I stood there with a huge smile on my face. He looked at me and said "You made that."

Memory 2:
Every summer my Grandparents would take my sister and I back to school shopping. We had a budget and it was up to us to choose what we wanted. I have always been frugal, I don't think there is anyone who can make a penny stretch further than me, well other than my Mom. We would go to the malls, the PX, and the other retail stores in the area. I would carefully plan out my clothing selections and determine if each piece was really worth the price. I suppose it comes from having a Mother who is a seamstress. Not only did the price matter but quality did as well. I remember if there was something really beautiful, really fancy, but I couldn't justify it, my Grandpa would. He would say "I just can't let you walk out of the store without this. It's too perfect and too beautiful to be worn by anyone else. Shh, don't tell your Grandma." Those were always his last words whenever he bought me something out of the ordinary. "Shh, don't tell your Grandma."

Memory 3:
Back in the day when I could have sugar, my Grandparents would always take me to Baskin Robbins. Or as my Grandpa called it, 31 Flavors. We would be riding in the car which always smelled brand new (my Grandpa liked new, expensive cars). He would look at my Grandma and say "Ruby, let's stop off at 31 Flavors and get some ice cream." My Grandpa would always get the German Chocolate Cake, my Grandma would get Almond Roca if it was one of the featured flavors, and I would always get something with tons of chocolate. My Grandpa would always get it in a sugar cone, not a cake cone, not a waffle cone, but a sugar cone.

Memory 4:
A long time ago when I did mission work, I had the opportunity to spend some time down in Long Beach, Mississippi. I was there helping to rebuild the area after Hurricane Katrina struck. I was working/living at a camp that was set up right after Katrina hit. On the last half of my trip, I couldn't go out in the field to work as much as I wanted to. I ended up injuring my finger big time when I was down there. It was an unfortunate roofing work incident which left my right index finger with a massive gash that probably needed stitches. But I'm kind of like a boy scout when it comes to my medical care, I'll make it work with what I got. Besides, there were no hospitals near by.

Anyway, I was working the assistance services station at the front of the camp. It's where people would come in, in hopes of receiving some sort of help. There was lots of paper work that had to be filled out, I had to know when they last received aid, where they received it from, what their FEMA number was, and of course basics like their name, address, and social security number. I had to check all of their information in the system to make sure it cleared. If it didn't clear or for some reason they didn't have their FEMA number on official FEMA letterhead paper, I couldn't give them help. There were these rules for a reason, to keep people from abusing the system. But I got pretty good at figuring out who was abusing the system and who really needed help.

A woman can barreling down the road in her pick up truck that looked like it was from the 1970's and rust was the only thing holding it together. She had a four or five year old son with her and a baby that looked like she couldn't have been older than six months. She begs me for a food box which contains three days worth of food and water, things like canned tuna, spam, boxed macaroni and cheese, electrolyte powder, powdered milk, crackers, and canned fruit and vegetables. Is it something I would want to eat? No. But when you're that hungry, that tired, and the only things you have are the possessions you carry with you, you'll take what you can get. It was desperation at it's worst. The only problem was, she didn't have her FEMA number on official FEMA letterhead paper. She had it written down on a little slip of paper that looked crumpled, torn, and like it had been to hell and back.

Legally, I couldn't give her anything, but in my heart I knew I couldn't deny her either. I could see the baby in the truck, so small in her car seat. The Mom said she had been sick and I could tell, I could see it in her pale face, her sad eyes, her weak body. And that little boy, four or five years old, he was so patient, so quiet, and so perfect. At that moment I did something which I wasn't supposed to do but in my heart I knew it was right. I told the woman to get in her truck with her kids, pull around to the side of the building, and I would help her. I was only authorized to give one food box at at time but I gave two. I threw in some extra water, electrolyte powder, and baby formula. I put it in the floor of her rusted truck and wished her luck. We said goodbye with tears in our eyes, both with gratitude in our hearts. I was thankful I was able to help and I know she was thankful she got help.

Memory 5:
It was my 21st Birthday, a Friday. I was on a church retreat to one of my favorite places in the world, Shrine Mont, which is in the mountains of Virginia. That summer I had received some of the worst news that one could ever hear in regards to their health. I was really trying hard to live my life at that point because it's what I was told to do. At the time, I wasn't expected to see my 22nd Birthday. It was a cold night in October, even for Shrine Mont. I remember at dinner there was a cake for me, I blew out the candles, and I made one wish. I had always wanted to see it snow at Shrine Mont, I thought it would be the most beautiful thing in the world. I didn't care if it was just a little bit of snow, but I wanted to see it falling from the sky. After dinner we had a little bit of a hoedown, with lots of music, lots of people, and lots of fun. In the middle of the party one of the kids comes bursting inside, screaming "IT'S SNOWING!"

My heart leaped from my chest, it was all I could do to remember to grab my coat and hat. I didn't walk, I ran outside! I stood in the middle of the field and spun around in circles with my arms out in the air whispering to myself "It's snowing, it's finally snowing." People came up to me and asked me why on earth was I so happy? I told them that my Birthday wish had come true, it was the one thing I wanted for my 21st Birthday and it actually happened. It snowed. While it didn't stick to the ground, I remember it stuck to my jacket, my hat, my gloves, and it gently tickled my face. I felt like I was in a dream, it was perfect. The one thing I wanted to happen came true, it was as if God was listening to me. He knew how badly I wanted to see snow and He made it happen.

P.S.- I'm 23 now:-)

I have more memories but it took a lot of energy to get these memories typed down. So maybe one day if y'all ever want to know more memories, leave me a comment. Of course if this blog entry was the most boring thing you have ever read, you have my apologies. It was nice being able to remember, something I have a difficult time doing.

Bisous!
Erika

Lupus vs. Erika

1:57 PM Posted In , Edit This 0 Comments »
99.9% of the time I'm a strong person, I have to be with lupus, there isn't another option. Lupus is an every day battle with me, at some point in my day it's going to affect me. I can't remember the last time I felt completely normal, like the way I used to feel before I got sick. I have my good days which I am extremely thankful for. I have my bad days which I push through and move on from. Then I have my really bad days where I just don't care. I have to know when to pick my battles and today I don't feel like battling. Today I feel like saying "Lupus, you win, I can't fight you right now."

The past weeks have been extremely difficult on me, physically, emotionally, and mentally. I've physically forced myself to do too many things because it has felt like the right thing. I'm emotionally drained from the past few weeks events. Mentally, I feel as if I'm not capable of doing anything because someone is always on my case. I'm constantly holding it together and at the same time second guessing myself (thanks to people who do it for me). All while trying to be a rock for everybody else to hold onto. I feel like breaking, I am physically, emotionally, mentally depleted.

I can't be a fighter all the time, I can't always be strong. Sometimes I just need the burden to be lifted, the pain to go away, the exhaustion to cease, and the games people play with my mind to end. Sometimes I need to stop fighting for a few days. If that makes me weak, so be it. But at some point I think we all have to be weak, in a way it gives our whole body a chance to recharge. So if I sound tired, really, really tired the next few days, it's because I am. If I look like I'm in pain and I might cry, it's because I am. If I appear to have an "I don't give a shit" attitude, it's because that's how I feel. Right now I'm having a hard enough time caring about myself.

I know for the next few days I might seem closed off and shut down. But I don't have a choice at this point, I have no energy to do anything else but shut down. I don't want advice, opinions, sympathy, or any form of nagging. What I need is for people to understand what I need from you. If I need space from one person and closeness from another, it's not because I love one person more than the other. I simply need different things from different people. It's all a different form of love. I'm doing it for my sake and for yours.

Please know that I am not quitting, I just can't fight right now. All I can do is exist.

Bisous,
Erika

The Ah-maz-ing Potion

8:01 PM Posted In , , Edit This 2 Comments »
Today I hung out with one of my closest friends and his daughter. We went to story time at the library and as I looked at all the children, all I could think was what amazing little things they are. They were still so young, I'm guessing under the age of two. They are small yet resilient, the world is their playground, and they are filled with joy. Even when they cry, it isn't long before they are laughing and smiling again. The little things appear to be brand new, over and over again, like the glimmer of a necklace. Small children constantly seem joyful to me, it's the smile on their face, the way the light shines in their hair, they can be like angels on earth.

It makes me think, "Why can't we all be like that?" Why can't we act like the world is our playground and find beauty in the small things? Why can't we shed a few tears and then smile suddenly? And why can't things in our life be new over and over again?

Sometimes I cook and I do something perfectly, I step back and admire the beauty of my dish. It's as if I've never cooked it before and I'm so proud of myself for doing well. Whenever I am feeling down and teary eyed, a friend somehow knows. They call, text, or email me and in those moments where I feel so alone, I realize I'm not and I smile. Every time I see orange day lilies, it's as if I'm seeing them for the first time. And the beauty of orange roses never fails to capture my heart, how the tips of the petals are always a deeper shade, it mesmerizes me. When I can remember that the world is my oyster, I'm a better person for it.

Today, the world was my oyster. I woke up feeling great, I wasn't in any pain, I wasn't sick to my stomach, and I could think clearly. No touch of a fever, no shaky sort of feeling, I felt completely normal. It was as if I was back in high school again and I was getting ready to bounce off to school. It just so happened that my friend called and I was invited to have a bit of fun. We went to story time, ran some errands, and then went back to the house. How wonderful it was to sit on the floor and play with blocks! I know I sound like a loony, but the simple things do it for me. And as much as I dislike reading the princess the same book over and over again, it seems brand new to her. I loved the random conversations I shared with my friend and how we goofed off and rough housed. No one will play around with me these days, I look breakable. But I proved today that I'm not! I don't think I have felt so happy in such a long time, I felt normal.

Of course all good things must come to an end and so did my perfect day. I started to have some inflammation and usually I am a grin and bear it type of gal, but I knew not to mess around with this. I was supposed to cook dinner and I was so excited about it. Unfortunately on the way to the grocery is when the proverbial shit hit the fan. I wanted so badly to just tough it out, to shut up and deal, but my friend knew something was wrong. I decided it was best for all parties involved to go home and rest up, so I could meet tomorrow with a smile. And I really do hate it when that happens, when all seems well and then then my life is all of a sudden grabbed from me. I realize at those points that I am not normal, that my life is different, but it's going to be ok.

I'm at home now, with my heating pad, in bed, and watching a special on ABC, J.K. Rowling: A Year In The Life. While I'm not really into Harry Potter, I enjoy the films on occasion but the books dragged on a little much for me. I realize that even though I'm not a wizard, and I don't go to Hogwarts, my life is magical. Today was magical for me, I was granted a small, magical gift that I wasn't expecting. It was like someone cast a feel good spell on me or I drank an ah-maz-ing potion. Even though my ah-maz-ing potion ran out, I have hope that one day soon I'll be granted another magical moment.

Bisous!
Erika

I Want The Fairy Tale

4:49 PM Posted In , Edit This 1 Comment »
Here lately I've been thinking a lot about love and relationships and how I can tie all of that into my life. I tell myself that I'm going to be alone, that I'm better off that way. I convince myself that falling in love will only lead to heart break that leaves me in shambles. I force myself to believe that I'm not meant to be in a relationship anymore. I see myself as damaged goods, who's going to buy the can of tomatoes with the dent in it anyways? I've got dents and my back story is certainly not able to be contained in a can. My label may be smooth and pretty with great graphics but if you eat what's inside, you'll probably get botulism. At least that's what I tell myself...

Recently I received my very first "booty call." You may be thinking "Why are you advertising this Erika?" Well I'm saying something because this is a lesson on how not to act when trying to have physical relations with a person. The situation happened to me with a friend, someone whom I have known for ages and ages. It is very demeaning to me because I feel as if our friendship is not being valued. Is the only reason he keeps me around is because he wants to have sex with me? Am I only a pretty thing that is desired in a sexual way? It upsets me because I don't give off the image of being easy. I dress modestly, I'm not overly flirtatious, and I certainly do not have a promiscuous past.

To make matters worse is that this person has been calling on a somewhat daily basis to see how I'm doing. I rejected the "booty call" because I was sicker than a three legged broke neck dog. I'm sorry but when I'm in pain, feeling like I'm going to throw up with a fever, and fall over all at the same time, I'm not in a sexy place. The emotions that come with physical relations are not exactly flowing through me. When I tell you that I am feeling really sick when you proposition me for sex, that's code for "I'm not going to roll around in the sheets with you." What makes me feel worse is that you have called in the days following to check on me. You didn't call me because you actually cared about how I was feeling. You called because you wanted to see if I was well enough to have sex. Let me clear one thing up for the world, I may be feeling better now, but I'm not going to give it up for just anybody.

Calling me and basically asking me for sex is not a very good incentive. Vivian, the character Julia Roberts played in Pretty Woman so famously said "I want the fairy tale." That's right people, I want the fairy tale, I deserve the fairy tale. I may have some damage, I may have a back story, but I believe every girl (or guy) deserves the fairy tale. I want to be wowed, wooed, and charmed till I'm floating in the air with glee in my heart. I want a bouquet of orange flowers to be waiting for me when I go into work. I want to be surprised with hand written love notes in the mail. I want to be embraced with a warm hug after a few days of being apart. I want someone to call and leave me funny voice mails that will make me crack up for hours. I want someone to think about me and believe with all of their heart that I am the best gal out there.

Now I've been catching some flack from some people and I know they mean it in a joking way. But apparently I'm throwing away the chance to have sex. I don't see it as throwing away anything. I'm not at in a place in my life where I feel comfortable having one night stands just so I can have physical contact. I crave the emotional connection of a relationship more than anything. Knowing that at the end of the day, I have someone who loves and cares about me more than I ever thought possible. If I were a person who felt comfortable loving and leaving then that would be one thing. But I need and DESERVE more than an hour in bed and a kiss good bye. If you're able to do that though, good for you, it's simply not for me. Go ahead and call me old fashioned, it's the way I am.

I deserve to be happy, I deserve to have love, and I deserve not to be hurt. I'm not going to go out and look for love either. When the right person comes along, so be it. And if they aren't scared off by my L.L. Bean luggage then they are definitely a keeper. If they are scared, ok, I'll keep living and moving on. Eventually, I will have true love that lifts me off me feet in the beginning and grounds my soul in the end. I know that relationships aren't easy, they take work, and sometimes you want to give up. But I also know that despite the pain and frustration relationships can bring, there is joy. Joy that makes up for all of life's faults. I'll take the joy, the frustration, the ups, and the downs. I'll take it all in stride because I want all of those things in my life.

Bisous!
Erika

Living In The Moment

6:13 PM Posted In , Edit This 2 Comments »
Today when I was at work I was given the task of going outside and rearranging items and cleaning everything. I was thinking to myself how much my life has changed, how much I have changed. I am not the same person that I was back in 2006, when I was somewhat healthy. My life was taken from underneath my feet, it was then crumpled up, and shoved in a trashcan. I was the the "no hope" case. But yet, here I am today and my life has changed. I am extremely thankful for my life because I'm technically a little bit of a miracle.

And I feel horrible about this but I was thinking about how some days I feel like it's all my fault. I feel like it's my fault that I got sick, I feel like I did something wrong to have this happen to me. I feel like I'm not a good enough person and that maybe I'm disposable. I was thinking about how great my life was before I got sick, I had an amazing job, I was in college, I had tons of friends, and all of my family loved me. But then once I got sick, everything changed. I couldn't hold a job, there was no way I could handle school, and a lot of my friends up and left me. Some of my family even turned against me. It's like when you're sick you almost become a liability and no one wants to be around you. And you feel so alone in the first place but when people up and leave, you think it's your fault.

There's a little girl I know, she's barely a toddler and I wanted to tell her something so badly today. I wanted to tell her to eat her vegetables, take a vitamin when she's old enough, and do everything her parents tell her to do. I was going to warn her not to smoke or do drugs, drink only in moderation and never drive when she does so. I wanted to tell her to do well in school, to stand up for herself, and do the right thing no matter what. I wanted to tell her never, ever to get sick with something that can't be cured. But if ever she did, to never lose hope because hope will always carry you through.

I wanted to tell her all this because once you get sick, you can never have your old life back. And you dream about it, you want it back so badly, it's gone though, forever. Most of all, I wanted to tell her not to be like me. Here I am, 23 years old, working a job that is just above minimum wage. I can't do the same work I used to do which is restaurant work. I have only two goals for each day, to make it through and to be a good person. I'm trying to get my life in order but it's really hard when nothing seems to go right. It frustrates me that I had my entire life planned out and none of it went as planned. I'm having to start over because most everything I had was taken away. I want her life to be better than mine. But she has so many more years to go and it will be years before she ever understands any of this.

So here I was complaining to myself about my life and basically how I want my old one back. I was then given a huge slap in the face by the universe. I reminded that when you least expect it, it could all be over. I remembered how my life should have been over but I kept going, no one was going to tell me when I should give up. Life is weird like that, right when you feel the worst about yourself you are reminded in the worst way to buckle up and get over it. That's what I'm trying to do, I'm getting over the fact that I can't have my old life back. I will never be the same person, I will always be sick, but at least for now I have my life. And I need to be ok with that, I need to be ok with the fact that at least I have a job. I need to be thankful that at least I have a few relatives and friends who love me. I need to remind myself that it could be so much worse and there is always someone who is suffering more. I need to tell myself that no matter what, I'm going to be ok and one day I'm going to be a great person who does amazing things for others.

In a way, I'm lucky, I got a second chance at life. I get the chance to be the person I couldn't be the first time around. I can be whoever I want to be, not what other people think I should be. And I'm becoming that person, I'm learning to be happy when I'm happy, sad when I'm sad. I'm learning to say what I feel when I feel it. I'm understanding that it's good to smile but it's also ok to cry. I'm letting people in my life instead of blocking them out with The Great Wall of Erika.

I had my "bitch" moment earlier today and it's ok, it's done now. I am moving on and making new memories that I may not remember, but at least I can live in the moment.

Bisous!
Erika

A Little Slip Of Hope

7:10 PM Posted In , , Edit This 0 Comments »
Over the weekend, a really good friend of mine bought be a present. I didn't know what to expect when I was told I was getting one. So I was surprised when I was handed a small slip of paper. When I looked to see what it was, I saw it was a lottery ticket. A mega millions ticket where the estimated jackpot is $94,000,000. You're probably thinking big deal? Right? Well, you're wrong.

This lottery ticket expresses hope to me. Realistically I know that I have a snow ball's chance in hell of winning. I know that I don't deserve to win that much money either. But to me, this lottery ticket gives me a little bit hope. I have a little slip of paper that could possibly change my life. I have a chance that might enable me to make my dreams and the dreams of others come true. It may be a minuscule chance, but a little something has to be better than nothing?

You know what means more to me than the chance of winning? Yesterday was my first day of expressing how I truly felt. I was honest, raw, emotional, I was every thing I wanted to be! I was given this ticket on my first day of being me. It almost felt as if it said "Congratulations on making it through your first day. For just being you." This ticket gives me hope, it shows me that even though the odds are against me, I could just win. The odds are against me in most aspects of my life but there is a chance that something, somewhere is going to give. That I will win a battle!

I'm already winning a battle too. I'm fighting against being so unemotional all the time. I'm fighting against not being who everyone wants me to be. It's difficult not throwing on a fake smile or hiding how I really feel. Right now though, I'm dead dog tired, it's been a long and emotional past few days. But I feel I've made a lot of breakthroughs. I have reached inside myself and in a way that has helped me to reach out with others.

Me and my little lottery ticket of hope are going to hope. We're going to hope that my life changes, whether or not I win. We're going to hope that I am able to consistently make changes that positively impact me first of all, others second. I've put other people's needs in front of mine for so long now it has caused damage. It is time for that to change, the change is coming for me. I'm not going to be the same girl who I was last week. And next week I am not going to be the same girl who I am this week. I am going to change, evolve, and become the woman I want to be.

I also never thought of the 28th of a month as a particularly lucky number, but now I do. I just remembered the reason why I think my Grandpa waited until April 28th to die. April 27th is my half birthday and he was the one who celebrated it with me. I would get a little card or a phone call wishing me a happy half Birthday. It was our little thing, our little secret that no one else cared about. And even though he couldn't call to wish me a happy 18 1/2 birthday, he stayed alive for it. He waited until early in the morning of the 28th to die. I honestly think he knew how much it meant to me. Even though I couldn't be there with him in his final hours, he knew. I don't think he could let himself die on our secret day. And on my lottery ticket, the first number is 28. It feels like a sign to me.

I'm going to save this lottery ticket no matter what.

Bisous!
Erika

Becoming Erika

8:10 AM Posted In , , Edit This 0 Comments »
After being awake all night from a bout of insomnia, I've made a lot of decisions. A lot of final decisions, meaning no ifs, ands, or buts. Starting today, I'm going to be me. If I feel happy, darn it all I'm going to be happy! If I feel sad, well I may just shed a tear or two and be sad. If I'm angry, I'm going to let all of that rage flow through and out of me. If I don't feel good, I might say something because I'm tired of putting on the happy face when I feel like I am going to fall over. I want to start being the person I feel on the inside.

I've tried to embrace this idea before. Sometimes it lasts for a couple of days, a couple of weeks, or at best, a couple of months. But this time around I'm going to try hard so that it sticks. I've got a lot of baggage that I need to work through and eventually let go of. I cannot let pain and hate impact my life as much as it does. I can't be afraid of the past or the future. I have to move on with my head held high, telling myself every day to "Just be me." A person cannot be expected to be brave every single day of their life. Why do people expect me to do that?

I know there are going to be some people out there who will not be happy with this. They will say "What's up with your mood?" Well world, however I am acting when you see me is what I am feeling. I'm going to learn how to wear my heart on my sleeve. I am going to see that in tears there are strength because with each tear, I'm letting go a little piece of pain. With less pain, I'll be stronger emotionally, physically, heck maybe even mentally? Eventually I will become the person who I can be proud of. It won't matter what other people think because this is my journey.

And I have a fabulous new friend to thank for helping me to start this journey. For inspiring me, for encouraging me, and for helping me to believe that it's all going to be ok. I'm not that great with emotions or with words, I don't even know why I have this blog. But I think this blog is a good thing because it captures these moments in my life. It takes my random thoughts and records them. I hope that many years from now I can look back and read this. I'm not going to remember this experience unfortunately. That's kind of why I have this blog I think. More importantly, that's why I have friends, to remind me of who I really am. And one day to remind me of how far I have truly come.

Here's my first raw moment of being me. I'm crying which is something I wouldn't normally do. I just have a few tears streaming down my face. It's ok though, it's all going to be ok because I'm being me. And it's the 28th and every month I miss a family member who passed long ago. He was the person who I was closest to in my family. And the funny thing was, we weren't even related by blood. But he saw me as one of his own grandchildren. He told me his life stories, he helped to make my life better when he didn't have to. We were unbelievably close. We were so close that when he died, it was his wish that I did the eulogy.

The other night I was in World Market with my Mom. I wanted to see if they had any sugar free candies (I keep hoping for a sugar free Galaxy bar). As I passed an aisle, I saw that they had little fruit flavored candies from France that came in a metal tin. La Vie Pastillines to be precise. Grandpa always had lemon flavored ones and he kept them in the side storage compartment on the passenger side of the car. I remember getting in the car and the first thing he would do was open up that small tin. I know the acidic bite on my palate mixed with a hint of sweetness and lemon extract all too well. I remember if I had more than two, I would have those little burn spots in my mouth. He also loved Werther's Original caramel candies. The funny thing is, I never liked them. But I pretended I liked them because I wanted to be like my Grandpa. Every now and again I'll get a craving for one, I can taste it in my mind. I remember the sound of the wrapper as I opened it, quietly crinkling under my small fingers. The smoothness of the cold, hard candy against my tongue. How it slowly melted away and coated my throat. How the last little bit always ends up getting stuck on a tooth and I had to pry it off with my tongue.

I don't remember a lot about my childhood, but most of my memories are those that were spent with my Grandpa. And I'm thankful that I remember them. They are moments I can never get back but cherish for as long as I can remember. I think he would be really proud of me if he could see me today. I may not have a college degree or a fabulous job. But I'm standing up for myself, I'm becoming the young woman he would be proud to say was his granddaughter.

Bisous!
Erika

Listen Up Lupus!

7:48 PM Posted In Edit This 0 Comments »
Dear Lupus,
I know that you love taking residence in my body. As much as I detest your presence I am unfortunately stuck with you. I wish you would just pack up and leave, in the same way that allergies do every spring. I know my body is all warm, comfy, and let's face it, dysfunctional. I understand that it's a mansion to you and you rule the roost. Well guess what? If I had my way, I would have kicked you out on the street eons ago.

Since we have to live together for as long as we both shall live, we might as well have some ground rules. First of all, you are no longer allowed to give me crazy lesions in my mouth and throat. I know you love destroying my mouth and my dentist loves you for it. But you need to stop, now. Second of all, bug off with the rashes. I truly do appreciate the fact that you do not take residence on my face. But the fabulous rash I'm rocking on my arm is really making me rethink wearing that short sleeved shirt I was planning to wear on Saturday. Of course you just don't care. How about my joints? If you want to make the joints in my fingers hurt, let's try one hand at a time. That way I can still do things with the other hand. If you want to make my knees feel like they are going to disconnect from my thighs and calves, do it on a day when I'm not working. Oh and enough with the dearn twitching! I really do not appreciate the sudden and very random electrical pulses that flow through my body. I look like an idiot when it happens. I know there are some things I can't get rid of, like kidney infections, digestive difficulties, and heart issues. Just give me a break on everything else.

I'm learning to live with you, Lupus. I'm appreciating my good days and understanding my bad ones. I give you as much rest as I can afford while leading a somewhat normal life. I'm trying to do everything I can to accommodate your lengthy visit. We might as well go to Vegas and get married at this point. I don't want you to rule my life and I tell people that you don't. Truthfully, you do. You own me, every dearn part of me. I wish you didn't, I wish I could be normal like I used to be. I also know I am extremely lucky and I should be thankful for each day I'm alive. Some days I'm not, I know it sounds rude and inconsiderate to you. But some days you make me wish I could just go ahead and die. Somewhere though, deep down inside of me, something forces me to keep going. Despite the complications you inflict on me, I am better than you. I will not give up just because you make me miserable. I will not give you that satisfaction.

I want us to get along. Do you think one day we could be friends? If you start to be respectful of me and my body, I'll respect you as a disease. Life is about compromise you know? You think you could start to compromise with me? I hope you are listening to me and I'm not wasting my time. I'm just hoping for the one day when I'll be completely OK.

Bisous!
Erika

I love crabcakes, chocolate tarts, me!

12:50 PM Posted In , , Edit This 0 Comments »
I had an absolutely amazing weekend! I've been working so hard here lately to get my life back. I have a job, even if it is only part time and temporary. I'm trying to figure out a new career path that will work with my body instead of against it. I'm also figuring out what my body can and cannot handle. Being outside, even in the shade, with sunscreen, for two days in a row makes my body very unhappy. I'm extremely photosensitive the sun literally makes me sick. It started with a lovely rash on my chest on Saturday night, pointed out by a friend. I was too busy being social and having fun to pay attention to it. Now my body is feeling really grossed out, everything is aching down to the core. But that's the price I pay to act my age!

I also want to say that I have the best friends ever. Everyone says it but I really do! I'm so thankful for the few people I share my life with. I've been a social butterfly before, had tons of friends, but then when they going gets tough, they up and leave. But I know now that if the going ever gets tough with me again, my friends will stand by me. I also hope that they know I will always be there for them. I will take whatever issues I have with myself and shove them away to be by their side. I have one friend in particular who has been extremely supportive over the past month or so. Each time we hang out, I get to know her more. She likes to think of herself as "the cool Mom" but I think of her as the cool friend with a heart of gold.

This weekend it was all about the food. I talked about food, cooked food, tweeted about food, it was foodyliscious! It reminded me of my good ol' days, working in kitchens, my life revolved around food. I was never tired, never sick, and everything seemed to be perfect. I dream about foods I wish I could eat again. But I know every food I eat has consequences and I have to weigh the pros and cons. I saw a delicious recipe for a chocolate tart and just about fell out in the kitchen. I also have the urge to one day make it to New York and eat my way through it. It will probably be 20 years from now when I have money, when I'm fixed up, and I may even have someone to go with me at that point. A girl has got to have dreams right?

I love my friends, I love my life (even when I say I don't), I love this blog. It's all so random but it's me and I'm about as random as they get. Crabcakes anyone? I love the fact that after a couple of years of being sick, most days I'm feeling better. I love that I am trying to be more social and I am actually feeling ok with it. I love that I'm getting used to my body and even when it's constantly attacking itself. I love that my life with lupus is never normal, every day is completely different with challenges I never thought I would face. I love knowing that one day I'm going to really be able to live and be free. I love that I have hope for a future, a future that wasn't supposed to be.

Most of all, I love the fact that I'm slowly becoming the person I want to be. It may not be the person I dreamed about in the past. It may not be what everyone wants me to be. But my happiness depends on me and not on anyone else. I am making my own happiness and I love that.

Bisous!
Erika

P.S.- Even though I love my life, I still want to crawl under a rock. I need a bucket of anti-inflammatories to pull me out of this one.

Go Eat A Hot Pocket Already!

5:39 PM Posted In , Edit This 4 Comments »
I hate my body. I hate, hate, hate, hate, hate, hate, HATE myself. Everyone tells me "You're lucky to be alive." On days like this, I don't care if I'm alive or not. I hate the fact that I have days that I really look forward to, like a special occasion. It's on those days that my body has to screw up, act up, and be an all around pain. It's on those days that if anything can go wrong, it will go wrong, forcing me to have to cancel my plans. I hate my body for doing this to me because it used to be normal. Believe it or not, a long time ago, I used to not be sick and I remember those days. I remember what it felt like to go through an entire day, not feeling pain or being sick to my stomach. I remember what it was like to not have a full body ache where I feel like I can't think or put one foot in front of the other. I just want to be able to do what I used to do but I can't because I have the world's stupidest body.

What makes matters worse is when people talk to me like I'm three years old. When someone says "Are you sure you feel like going?" It makes me second guess myself, it makes me think that I actually cannot do something. Words are powerful, they affect people physically, mentally, and emotionally. When someone talks to me like I'm three, it affects all aspects of my being. I know I have the memory of a gold fish. I know I look like I'm 12 years old. I know that most days I feel dirt and on my really bad days I feel worse than most people will ever feel. But what makes matters worse is when people talk down to me. If you know me and talk to me, don't talk down to me. I will never, ever talk down to you so please treat me with the same amount of respect. I am not a child, I am a full grown adult who unfortunately lives with illnesses that restrict my life. But these illness do not make me mentally incompetent. To exacerbate the situation, people get mad at me when I get an attitude about it. Well, excuse me but I guess that makes me a toddler who talks back!

I know I sound like a whining brat right now. I just wanted to go to Super Target so bad. I didn't have any money to spend there either. I just wanted to hang out with my sister and our friend Michelle. I think Michelle is tons of fun, she lets me come over and play video games that I don't have. She talks to me about cooking, how cool is that?! I was so looking forward to seeing this amazing Super Target that I heard so much about. I was wondering if it was maybe two stories? I was wondering if it carried more things than the normal Target that is in my area? I was so curious and excited and then my body had to go and act stupid. What made it worse was being talked down to. I might have been able to go if I had just been talked to like an adult. Maybe I don't deserve to be talked to like I'm actually the age that I am? Who knows, it's one of those things I'll never understand.

I guess it's a good thing that I stayed home. My stomach is killing me, I have a tickle in the back of my throat. And because my stomach is upset, I'm afraid to cough. I'm lightheaded and my head hurts. So maybe it's a good thing that I didn't go? I will spend my night here, at home, in my bedroom like I do every other night of the week. I can't go out and act my age because my body won't let me. It doesn't matter how many pills I take, I'll never be normal. I may look completely normal most days but on the inside I'm not normal. I will never be able to say I'm healthy because I live with illnesses that can be treated but never cured. I will never be the same girl I was before I got sick. My life is forever different and I just wish it could be different for better reasons than this.

So here are some new rules that I am implementing in my life. If you are someone who is in my life, LISTEN UP!
  1. I'm trying to be the best person I can be. It's incredibly hard. It's much harder than you think to be me. A lot of people think my life is easy because I am sick, switch bodies with me and you'll quickly change your mind. It's hard to look and act normal especially when you feel less than normal.
  2. I'm sorry that I'm sick so much but I cannot help it. If I could, I would! I hate the way I feel most days but I have to suck it up with a smile on my face. And some days, like today, I can't smile because I'm beyond sick, get over yourself and cut me some slack.
  3. When you talk to me like I'm a toddler, it hurts me. It is degrading and I don't deserve to be treated like this. You may not even realize that you are treating me this way and when I point it out to you, don't act all offended. Especially when I've already pointed it out to you numerous times.
  4. I don't complain unless I absolutely have to. I complain when I feel like I am at the point of no return. I complain when my life has gone to complete crap and there is nothing more I can do to fix it in a decent amount of time. I try to stay positive but it's difficult when everything around you caves in and you have no way of getting out. Every day something goes wrong with me, something that may not be able to be fixed. Or if it can be, I don't have to the resources (like money) to fix it (just ask me about my mouth that my body is attacking, seriously). Today is one of those complaining days.
  5. You will never understand what it is like to be me. Just like I will never understand what it is like to be you. Unfortunately you do not have the ability to switch bodies with me. You don't have the power to walk in my shoes. Don't say you understand because in all honesty, you don't. So please don't try to compare your life to mine, it will never compare. Please don't say "You're sorry..." about a certain issue I'm enduring. Because 99.9% more than one thing is wrong with me at a certain time. I'm just not going to say anything about it because I don't want to be a Debbie Downer.
Well, I'm feeling like a frozen Hot Pocket which equals death. If one has ever consumed a Hot Pocket, you know what I'm talking about. If you eat a Hot Pocket, be prepared to not feel your taste buds for three days. Be ready to call out of work three hours after consuming the Hot Pocket. Buy toilet paper and Pepto Bismol along with your Hot Pocket. If you have a death wish or need to lose a few pounds before a date, eat a Hot Pocket. In case you've ever wondered what the atomic bomb would feel like in your gastro-intestinal tract, eat a Hot Pocket. I feel like I've just eaten a Hot Pocket, except I haven't because I'm not that dumb.
Bisous!
Erika

If I Couldn't Fail?

4:51 PM Posted In , , , Edit This 0 Comments »
So... I know I went AWOL and I apologize to all of my faithful readers. It isn't that life has been busy, I simply have not felt like writing. I think that most bloggers have their own periods of absence because that is the way life works. I haven't been inspired to write, or to even create art! I've been pretty down in the dumps until recently. Drum roll please... I have a job! Now before you go jumping on your bed, hitting your head on the ceiling, and ending up with a concussion, let me tell you the deal. It's temporary and I'm a floater, I come in to work as needed. I'm working at a local business that is right down the street from where I live which is convenient for me. I'm hoping that somehow, someway I will become permanent because of my lovely work ethic. I worked my first day on Friday and I was surprised that I was able to last for 7 hours!

I've had a quote in my mind for the past few weeks. I think about it day in and day out and right now it means so much to me. "What would you do if you knew you could not fail?" This quote is by Robert H. Schuller who was an American televangelist who created the Hour of Power. Now I am not a fan of church on television, but I'm a big fan of this quote. What would I do if I knew I wouldn't fail? I would pack up shop, go down to Panama and do mission work. I would take odd jobs to make ends meet, I would then spend the rest of the time helping others. I would work at churches and schools in the area, helping the youth to become everything they can be. I would tutor, build, inspire, care, I would do it all! Now I'm not worried about failing at the mission work, but I'm worried about my health. I'm worried that my health would fail, that everything would go to pieces, and I would be too sick to stay down there.

One day though I'm going to make it back down there. I have a lot of stuff I have to get worked on first. I need to get everything fixed and under control before I take such a big risk. I can't leave the country with my life constantly changing. I need to get sealed, sewed, covered, capped, replaced, and so much more. It seems like every day something in me is falling apart or breaking, every day it's something that may not be able to be fixed. And every day I'm expected to keep going with a smile on my face when I'm facing failure. Every day a little part of me fails and I have to be chipper about it. I don't have a choice but to go on without complaining too much. Seriously, the only time I really complain about my health is on this blog.

Some days, well most days actually, I want to scream because I want life to be fair. I want to be normal, happy, healthy, I don't want my crappy genetics and auto-immune disorders. I want to be the person who can get by with a couple of Tylenol every few months. I want to be able to get by with just brushing my teeth without flossing or mouth wash. I want to be able to forget about the sun when I go outside. I want to be my age instead of feeling like I'm middle aged! I want to be normal, or at least what I think normal should be.

Y'all want some more happy news? My Dad has talked to me (or at me) a lot here lately. On Friday night when I got home from work, I got invited out to dinner with my parents which never usually happens. He talked to me in the car, at the restaurant, and on the way home. Now were the questions directed towards me? Not really, but it felt like I was able to speak up. Did I say anything of importance? No. Did I tell him how 99.9% of the time he sucks at being a Dad? Nope. I just kept my mouth shut and stayed civilized because I do everything I can to be a good daughter. Maybe he will keep up this good trend? Maybe just maybe he'll become the Dad he used to be and less of the distant man who lives in my house.

I'm really excited about tomorrow, I'm going to the Virginia Holocaust Museum. My Mom and I were supposed to go last summer but we never got around to it. I have been to the United States Holocaust Memorial Museum in Washington D.C. a couple of times. I have also visited the Dachau Concentration Camp Memorial Site in Munich, Germany. But I have never been to the museum here in Richmond, Virginia. The Holocaust fascinates me, intrigues me, it makes me want to learn more whenever I can. I have a hard time understanding how so many people could allow something like that to happen. I'm fascinated because Hitler made so many people believe in lies, in hate, in destruction, yet at the time they didn't know. They were blind to his agenda that gave so many people a false sense of hope.

I'll try to get back on the posting routine. I hope the adventures in my life will translate into interesting blogs. Thanks for reading!

Bisous!
Erika

Life Is Kind Of Funny Like That

6:14 PM Posted In , , Edit This 0 Comments »
Never in my wildest dreams would I have said I wanted a career in the medical field. I never would have dreamed of myself working at a doctor's office or a hospital. But I feel my experiences have changed my way of thinking. I've been seriously considering it and honestly at this point in my life, I can't see myself doing anything else. As much as I am interested in social work, I can't see myself doing it. As much as I understand world religions, I can't see myself telling others what to believe. Sure, I'm amazing when it comes to foreign languages but I just don't see myself teaching them. Maybe it's taken three years of some really tough life experiences in order to figure it out? I'm beginning to think that my time hasn't been wasted. For a while I've felt like my life has been wasted because it's taken so long to get me put back together. But maybe, just maybe that isn't true?

I'm debating between working as a radiology tech, phlebotomist, or having a job in medical administration. Of course all three I would have to go back to school for. Which I don't mind once I get a job and I have money to pay for college. I feel like this is the right career move for me. I feel like for once, I am making a choice that will lead me in the right direction. It will impact not only me but those whom I am able to help in the process. I'm not cut out to do any of the past careers I have thought I could do. But I'm fairly sure I am cut out for this. Of course I will have to wait for the excitement in my heart to die down. I need to be sure that this is what I really want before I act on it.

I had another job interview today. I won't say whether it went good or bad because honestly I don't know. Whenever I think something goes well, it turns out to never end well. If I think something went poorly, usually it ends great. Right now though, I just don't know. Also I'm worried about insurance because mine runs out when I'm 25. I can't afford private insurance on my own either. If I let my insurance lapse, I'll never be able to get insurance again with my pre-existing conditions. My Mom and I are trying to figure out if I can stay on her insurance after I'm 25 and what that entails. Would I have to be declared disabled?

In the grand scheme of lupus, mine probably isn't that bad. Does it look bad to my family and everyone else who surrounds me? Probably. I tell my rheumatologist that I am really tired but he still thinks I can work full time because I'm "peppy." Fatigue is the number one thing on my list. Then comes joint pain, then muscle pain, and toss in my cognitive dysfunctions and I'm a big bucket of fun! Well, once I get a job I'll see what I can do. If I can work, then I'll work and I will be more than happy to. But if I can't, well I can't and something will have to work out. Right now this and everything else in my life seems to be up in the air. Maybe things will work in my favor and one by one things will land in the right order. So that's what I'm hoping for.

I feel like I need a miracle after miracle after miracle. I feel bad because I know there are people who are worse off than me. Maybe I shouldn't hope but I don't have a choice anymore. All I have left is hope that waivers when the wind blows. People think I'm so strong when I'm weak. Everyone thinks my faith is amazing when it's actually quite unremarkable. Lots of people assume about me, anything ranging from the good, the bad, and the flat out ugly. And most of it probably isn't true, I'm nothing great. I'm just your average gal with some not so average problems trying to make an above life for herself.

Oh, and I can't wait till August. I won't give any specifics on that. Except I'll get to see a person whom I haven't seen in what feels like an eternity (I'm talking years). We talk often, well not really talk, but we text message each other. And life has thrown us in separate directions but for one day it will be like old times, except better. Partially because we are both older and probably not as stupid as the younger versions of ourselves. It will only be one day of my life but it will probably be the highlight of my summer. Unless of course I get a job, I get to keep my insurance without filing for disability, and my mouth gets fixed. But even then, this still might trump it all. It's funny how one person can mean the world to someone. It's even funnier that I have a person like that in my life. And you know what the funniest thing is? I don't think anything will ever come of it because life will again throw us in separate directions.

Bisous!
Erika

It's The Simplest Things

9:50 PM Posted In Edit This 1 Comment »
After thinking about what I wanted to write about, I finally thought of it. First of all, I don't know if anyone else out there with lupus has this problem or if it's just me. I sometimes cannot make a sentence that other people understand. Now it's not like I'm talking gibberish and putting words together that don't make sense. My Mother often looks at me like I'm an alien because she doesn't understand what I'm trying to say. And the hard thing is that I know what I want to say, it all makes sense in my head. But when I say it, apparently it doesn't make sense.

I get frustrated especially when I don't understand something. For me it can be the simplest thing ever and my brain just will not allow me to understand. I have to go over it step by step by step. Forget about going fast and furious with me when covering something basic. If you speed along and don't give me time to process I can promise you that I'm not going to get it. Despite all of this, I have the ability to pick up foreign languages in about a week or so. I see music in a way that I have a hard time explaining. But the only way I know how is it is like I am seeing an old player piano, the keys move but no one is playing it. I see that for a lot musical instruments, 99% of the time I can play what I hear (and see). I don't know how I can or why I can, it's just the way my brain works. Can I do something as simple as read music though? Not very easily.

It's so weird because I used to be a public speaker a long time ago. And I would love to get back into the whole motivational speaking thing. I suppose I would be ok because I would have a very well planned speech in front of me. But what if there were question and answers? What if my brain decides to freeze up on me like it does and I can't process the simplest of things? Am I supposed to sign "I'm sorry but my brain is not working with my mouth and whatever I say probably won't make a dearn bit of sense to you?" Most people in the audience would probably not know American Sign Language, unless I was speaking to the deaf and hard of hearing in the first place.

It always seems to be the simplest things for me. Reading and comprehending directions. Trying to explain what I don't understand. Attempting to talk about how I feel. It is the simplest of things that shuts my brain down where I sit there unable to speak because I just can't. I know all of you will say "Go to the doctor." Seriously, this doesn't happen enough for me to justify a doctor visit. Besides? How would I explain it? I would get looked at like I'm nuts and that happens enough for me. So here I am sitting here crying because I can't understand the directions I am supposed to be following tomorrow when I go to a job interview. Sometimes I just can't get it and it's so frustrating because I want to understand. It would be one thing if I couldn't understand German while playing the piano and chewing gum all at once. But no, I can't understand directions because my brain just won't let it happen. And I can't explain what I don't understand.

Who knows if this post even makes sense? I don't know right now, I'm so tried and frustrated and I'm crying because I can't understand. And my sister is texting me telling me to look stuff up on VDOT. My brain is about to blow up and I'm supposed to navigate the VDOT website? Yeah, that's a genius thought.

Bisous