On The Lupie Side Of The Street

I don't like to talk about my family too much on here. I figure they have their owns lives and if they want the world to know about it, they can write their own blog. They deserve their privacy if that's what they want. But this is something I just can't hold in any longer and I've been holding it in for about two weeks now.

My favorite Uncle, my only Uncle actually, was diagnosed with lung cancer. The biopsy just confirmed it today but we still don't know the type or stage. He had been sick for about two months before this was discovered. You would think after the tests he had done, lung cancer would have been detected sooner? It wasn't though.

I know that what he is going to experience with cancer is going to be quite possibly one of the hardest battles of his life. Let me tell you, this man has battled so much already. He was in a horrific accident about 14 years ago and he broke his back which left him paralyzed from about the waist down. My Uncle was bound and determined to learn how to walk again even though doctors said he never would. He now walks with the assistance of some of the most awesome canes you will ever see. He still uses a wheelchair because walking is absolutely exhausting for him. But he walks which is what counts.

What I know from my personal experiences dealing with chronic illnesses, he is in for a long, hard road. It doesn't matter whether he chooses to go through with treatment or not, it will still be hard. He's a strong man and he doesn't like to accept help, we're alike in that way. We don't like hand outs, we don't like people having pity on us. Life is what it is and all we can do is live it, whether it is good, bad, or flat out ugly. My Uncle is a fighter though, he has fought to live through so much already. He can fight through this, I know this in my heart. He can do this. When you are sick and you have to look death in the face every single day, what keeps you going is your will to live. You have to want to live, my Uncle wants to live.

As most of y'all know, I'm a big fan of Life is good products. I can't afford their merchandise very often because a lot of it is too expensive for my budget. But I do have a few of their items which I absolutely love to pieces. My tattered brown cap with the pink heart has a deeper meaning to me than what the outside world sees. I have an awesome olive green cap that I wanted so bad and I never thought I could have it because it was too expensive. It ended up showing up as a fantastic Easter present from an amazing friend. It was perfect because I was sick on Easter Sunday so it was the pick me up I needed. For my Birthday I got a little silver cuff bracelet that says "Take your love everywhere you go." I wear that bracelet every single day. It's scuffed, scratched, worn, and loved dearly.

Regardless of what Life is good product I'm wearing, it's a little bit of a comfort for me. It's like the adult version of a security blanket that no one knows about but me. In my heart I knew that my Uncle needed something from Life is good. I knew that this could be the one thing that reminds him that he can go on. Even in the darkest of moments, he has something to live for. Before he started to get sick, he rode his tricked out motorcycle all the time. It was custom built for him, with extra wheels in the back for stability and all hand controls. He has been working on this motorcycle for the past few years and I think it was a dream come true for him to have it.

I remember one time back when I was really sick, he came over and he took me on a motorcycle ride. We rode all around and he would ask me if I wanted to ride some more. My answer? "Yes." I felt so free when I was on the motorcycle. The wind was blowing in my face, swirling all around me, and swooping all of my pain and fears away. I was free from sickness when I was on the back of that motorcycle. I will never in my life forget the way I felt and how wonderful it was.

I know that over the next few months he probably won't be riding his motorcycle as much. So I found the perfect Life is good t shirt for him to remind him of the good times. You can see the shirt here. When I saw it on the website I knew that this was the shirt, that he needed this shirt. I needed him to have this shirt. I wanted to get myself a matching one. But when I went to Jake & Friends and tried on a men's small, it swallowed me whole. I guess it worked out for the best, I didn't need a shirt and I couldn't afford two. I just wanted us to have short sleeve Lig shirts together, so we could be even more of a team. But it's OK because my Uncle needed this shirt, I'm glad the one I wanted for him was in stock. I am very thankful that I was able to stretch my budget enough to do this for him.

I hope his shirt gives him as much comfort as my bracelet or caps do. I hope it's his secret security blanket that carries him through the rough times. I hope when he wears it he remembers that I'm his cheerleader, I always have been and I always will be. I'm the funky, spunky, quirky, and weird niece who loves her even funkier, spunkier, quirkier, and weirder Uncle.

I hope it reminds him that one day he will be back on his motorcycle, flying down the road, and free to roam wherever his heart desires.

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

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

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

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

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

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

Thanks to the wide world of Twitter, I decided to hop on the band wagon of positive thinking. For the next 21 days (as of yesterday) I will not complain. That's right, complaining will go out the window and positive thinking will walk in through the door. I'm hoping this doesn't sound like a complaint, but I'm having a difficult time differentiating between a general statement and a complaint. If I were to say "I feel tired." Would that be a general statement or a complaint? I'm thinking instead of 21 days of not complaining, I will practice 21 days of positive thinking. That way, if someone asks me how I feel, and if I were to feel tired at that time, I could say "Right now I'm feeling tired, but I know that tomorrow will be better." Doing that allows me to be open and honest with others while staying optimistic.

I'm still on the hunt for a job and though I haven't found one yet, things are looking up. I knew that something, somewhere had to give. Now I feel like I might be getting somewhere. For those of you who know me, I want to work, I need to work. And you also know that 99.9% of the time I am a people person. I feel as if that is the one quality that will get me a job. I think that my personality will shine through and someone will be attracted to it like a moth to a flame. I'm excited about the possibilities that are to come. The chance to throw myself out there again and grow as a person. Who knows, once I save money and get my body adjusted to the rigors of having a job, I can try going back to school?

I keep telling myself over and over again that the following will happen.

• I will get hired.
• I will have a boss and fellow employees that like me.
• I will have customers that find me warm (not feverish, tee hee hee), friendly, and helpful.
• I will work to the best of my abilities.
• I will expand my knowledge by learning everything I can about my job.
• I will try hard even on my difficult days.
• I will be around people who will be understanding of the fact that I have lupus and that sometimes I have limitations.
• I will hold onto this job, even when times are tough, even if I feel like I am unable to carry on.
• I will be the best person I can be, each and every day, always striving to reach a new personal goal.

I know that some of you may think those are unrealistic goals. But for me, I have to have goals and I have to believe in something. I am choosing to believe in the positive instead of the negative. I know that not everyone in this world will like me, but I can strive to be a person who is liked. I understand that some days I may not feel like working, but I can at least come in with a smile on my face and try my hardest. I know that there may be customers who are unfriendly and possibly rude, but I will remain calm, friendly, and understanding. I will remind myself when times are tough that I am lucky to have a job. I will recall how hard I worked to get the job and at that moment, I will feel better about the situation.

That's my plan, to stay positive, to reach my goals and then set new ones. And when my 21 days is finished, maybe it will have instilled a quality in me that can carry on for the rest of my life? Life is good and it's going to get better, I just know it will.

For the past few days I've been a bit on the down side. I've got what feels like 9384934839 things on my plate and none of them are getting cleared off. It feels like no one is understanding me and honestly, I'm getting tired of explaining myself. It's hard because everyone thinks I'm trying to be mean when I'm really not. The impact of not having a job, feeling like a loser, and having an uncomfortable living situation is really taking it's toll on me. People keep trying to give me job suggestions, but half of them aren't thinking about the job. Half the people don't think about the impact a certain job would have on me. Half the people don't realize that whatever company it is won't have much tolerance for someone like me. But there have been a handful of people, practically complete strangers, who have been very helpful to me.

For now all I can do is to keep telling myself that something, somewhere, is going to give. Someone is going to call me in for an interview, someone is going to hire me on the spot. I'll have a job that I will learn to love. I will work hard, I will push my limits (even though that's a no no), and if I get sick, my employer will understand without making me get a doctor's note for a flare. I will have a job where the other employees will like me and supervisors will think I'm wonderful. Customers will think I'm attentive, friendly, and helpful. I'll work for a company that has excellent values and a sense of community. All I can do is keep trying, keep hoping, and keep wishing that something, somewhere is going to give.

Sometimes I think we all need to be reminded of the things we are thankful for. I think we all forget from time to time, how lucky we really are. In my family, we never went around the table at Thanksgiving saying what we were thankful for. Or if we did, I don't remember it ***smacks head*** silly brain. So pardon my incredibly long list as I remind myself what I am thankful for. Who knows, some of it may shock you (get your inhalers, defibrillators, and Epipens ready).

1. Life.
2. Most of my family...
   
3. My "stand by me" friends, including but not limited to Ariel, Ashley, Leyna, Amy, M@, and especially Michele.
4. Some very special people from my church such as Jodie, Thomas, Maria, Suzanne, Emma, Estelle, James, Lauren, and a few more who I'm probably forgetting.
   
5. Bed, my cozy, comfy bed.
6. Medications (thank you for promethazine,plaquenil, and reglan especially).
   
7. Heavy curtains.
8. Amazing doctors.
9. Dark painted rooms.
10. Laptop, which I am thinking of naming, any suggestions?
11. My toothbrush.
12. Sugar free wheat pasta.
13. My old faithful, risen from dead 3948340384 times, precious pink iPod mini.
14. My obsolete digital camera.
15. Crocs.
16. My kids size pink and gray Adidas sneakers (perfect walking shoes).
17. Fruity teas.
18. Deodorant (seriously, without it, we would all stink).
19. CNN.
20. For learning how to stand up to my Dad.
21. My Mom's car which is slowly becoming mine (muahahahaha).
22. Job applications.
23. The ability to inspire others.
24. Arts and crafts.
25. Hand sanitizer.
26. Cleaning products (I'm a neat freak).
27. Penguins, enough said.
28. Homemade sugar free choco-hazelnut spread (Nutella).
29. My secret cookie recipes (but Mom knows some of the secrets, don't go holding her ransom, I'm broke, will only pay in cookies).
30. Life is good hat and book.
31. Transitions lenses.
32. Clothing, yeah rocking the paper bag was so last year, just kidding, or am I?
33. The Lupus Foundation of America.
34. Air conditioning.
35. Hope.
36. Music, all sorts.
37. My voice, for singing, for speaking, and how people miss it when it's silent.
38. Sugar free chewing gum (I'm constantly chewing gum, apparently it's a stress reliever).
39. Emergen-C.
40. This blog.
41. The people who follow this blog.
42. All of my fellow Tweeters.
43. Energy saving light bulbs.
44. Clean water.
45. Photographs
46. My last $10 which I tried to give to my Mom to pay for gas for letting me use her car.

I'm sure I'm thankful for much more, but right now my brain isn't functioning at a prime level. Right now all I want to do is have a job so I won't feel like such a pathetic human being. Right now, I'm trying my best to stay optimistic but I feel like I'm not a very good person. Right now I wish someone could just tell me that they have a job and I would be perfect for it. I just want to be a good person and having a job would really help.

I know a celebrity would never read my blog, that's not pessimism speaking, that's realism. I wish though that one could come help me out a little bit. I don't want a car, or a new house, or lots of money, I just want a job where I can help people. I just wish that someone could see that I'm trying so hard, and I want nothing more than to be healthy and to work. I just feel like I need a big miracle right about now. Yet, I keep telling myself that life is good, that I have at least 45 things to be thankful for, and that I'm doing the best I can do. So if any of you out there have the ability to make miracles happen, please, I'm begging you, send one my way. I know I am the least deserving person on the face of the earth, but I need one. I just need some help and I just want to help others. I feel so selfish but I just need some help.

Me and the tears that are streaming down my face are going to sign off now. I very rarely cry and when I do, it's a big deal. I need a massive box of Kleenex too.

Don't fret, I'm still here! Here's a weekend update minus a Saturday Night Live skit. Over the weekend, I only walked on Saturday, I gave myself Easter off. I walked 1.80 miles on Saturday which wasn't a lot. But I've been extremely tired and running on empty here lately. On Sunday I woke up early and got ready for church. I went to the 11 AM service with Ariel. We both enjoyed catching up with people who hadn't seen us for a while. The service was nice but we skipped out early because Ariel's blood sugar got a little on the low side. That afternoon we had Easter dinner at my house with all of my family. Ariel, my sister Lindsay, and I had a blast taking lots of unconventional Easter portraits. It was like the good old days when we were all constantly together.

This morning I decided to take a walk when I probably shouldn't have. I've had a nagging lower back pain mixed with abdominal pain. I keep thinking it might be because of my new walking routine. But of course it's a good chance it's my kidneys. If I'm not feeling better by tomorrow morning, I'll call my doctor. Anyway, this morning I walked 2.60 miles! I didn't think I walked that far, but I did, surprise surprise! Once I got home I started to feel worse. I've been lounging in bed, drifting in and out of sleepy time land since then. I know my Dad is probably mad at me because I didn't do the dishes today but I'm sorry, I've been too tired. We don't have a dishwasher either, everything is done by hand.

Today Life is good on Facebook sent out a mass message about a story they posted. It seems like in the moments that I really need to be reminded that life is good, I get reminded. It's as if the people there know when I am down or not feeling well. They also seem to know when I am doing well, when life is going my way. In those good moments, I am able to celebrate and rejoice in the fact that life is good. They posted this story, Hudson company accentuates the positive. In the article, Keith Campbell who is the company operations director summed up the way I see life. "Life isn't easy. But life is good."

So right now for me, life isn't easy, but it's good. It's good because I was able to celebrate Easter with my family this past weekend. It's good because over the past week I have walked 18.84 miles! Life is good because I've been able to do some painting here lately. Life is good because I don't have to get gum grafts even though I still have to get a lot of other craziness done. Life is good because I'm planning to go to a wedding this weekend and the following weekend I will be at my favorite place ever. Life isn't easy, but sometimes the best things are hard, they take lots of energy, commitment, and of course, love.

I think today is going to go down in the books as my best day ever. What qualifies as the best day ever for a person varies with the person. A person's best day ever could be the day they got married, or the day they had their first child. The best day could be the day they graduated from college or the day they saw their grandchild graduate from high school. But today, April 2nd, 2009, I think will go down as the best day ever for me. The video blog below explains it all.

So I went on the Life Is Good website tonight to stare at hats. Y'all already know I LOVE hats. Anyway, I wanted to see if they had anymore FUEL letters up. Well, lo and behold, my letter was up on the website! I'm in a state of shock!

I love reading other people's life experiences and it helps me to be grateful for the blessings in my life. I also feel like I share a common thread with all the people who's stories are up on the website. We all believe, no matter what life throws our way, that life is good. Even when we are fed up with whatever the day brings, we know deep in our hearts that life is good. And the Life Is Good company has helped to bring that idea to our society. In a world so caught up in pessimism, sadness, anger, and hate, we forget about what can bring us joy. A smile, a hug, a hand made card. It just takes something little to completely change someones day around.

If you haven't been to the FUEL section at Life Is Good, you can get there by clicking this sentence.

And in a few weeks, my email will hopefully be sent out to about 90,000 people. If you want to be one of those people who receives it, click on this sentence to get on their email list.

I'm exhausted and I'm going to go to bed. I'm so excited because maybe my email will brighten someones day when they read it. Please be sure to read the other FUEL stories, not just mine. They are all so very inspiring and they motivate me to do the most that I can with my life.

"But if you try sometimes, you'll get what you need." ~Mick Jagger and Keith Richards.

I have realized here lately that I have not been my typical optimistic self. But today I got a little bit of a pick me up. Something that I totally wasn't expecting but managed to life my spirits. It reminded me that I need to stay positive even when life is a bit on the stinky side (like it has been). I remember from a speech that I did a long time ago that I said "Life is a journey, not a destination, so take your time and enjoy the ride." Who knows if someone has actually copyrighted that phrase before I said it? Here lately, I haven't been enjoying the ride, the past few days I've felt as if I was going on because I didn't have much of a choice. But you know what? Even though I've been dog tired today, it's better than yesterday. And hopefully tomorrow will be better today. I hope that my life only goes up from here and it is up to me to make it work.

Here's a little video blog from the heart!

I don't exactly have anything new on the medical front to discuss. But I do have something on an inspirational level to share with y'all! Earlier this evening, I decided to send an email to the folks at Life Is Good. Most of you know that when I go outside, I'm sporting one of their lovely baseball caps. On their website, they have a page where people have shared their stories and how the Life Is Good company has affected their life. On a whim, I decided to share my story.

An hour later, I received an email from the director of communications, Jim. He was so inspired by my story that he asked for my permission to use it. It could be included in their book FUEL. It contains the life stories of people from all walks of life, with all different experiences, but with one common thread that ties it all together. The fact that no matter what, life is good. They hand this book out to employees as a way to inspire them, to show them that their work does impact others in a beneficial way. My story is also being sent for review to be in one of their weekly emails. Their emails get read by about 80,000 people a week. He is also going to see if my story can go on their website.

I won't know anything for a while, I'll certainly be on the lookout though. It's quite exciting to think that I might be able to share my story with such a large audience! I just thought I would share this little tid bit with all of you lovely people who read my blog.