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.

As most of you know, life has been rough. In between unresolved health problems, crazy insurance issues, and feeling so lost and hopeless, I've been a mess. But today I went to go see my two "nieces." Even if it was just for a few hours, I felt more centered and calmer than I've felt in the past few weeks.

I needed to see them today. I know that no matter what happens in my life, I know these two little girls will be there to greet me when I walk through their door. The baby, Jacqueline, she just wants to be held right now. She is so heavy in my arms, I have a hard time walking around while holding her, which seems to be her favorite. It hurts my arms, shoulders, lungs, and heart, I feel pain everywhere when I hold her. But when I hold Jacqueline, none of that matters because in that moment I know she needs me. She is such a trooper too, I've seen her fight and that sort of spirit is something that can never be extinguished.

My other niece, Caroline, she always is so excited to see me. She always wants to hug, sing the ABC's, climb all over me, and color. Caroline reminds me a lot about myself. She wants what she wants when she wants it. She has a mind of her own, very strong willed, even if it does get her in trouble. Caroline never gets tired of me, every time she sees me it's as if I'm a brand new toy. She knows my name, she says it like "Eh-kah" and it melts my heart every time. I see her growing up more and more each day. She is growing into her spirit and I love and accept every part of who she is. I always will.

I never thought I could love two children as much as I love Jacqueline and Caroline. But I do. I know I could never have children of my own but I'm OK with that. Because I have two lovely girls in my life who give me more love and more joy than I could ever dream of. Through all of these struggles I've been experiencing, Jacqueline and Caroline are a little thought in the back of my mind. Jacqueline had to be such a fighter in the beginning, she fought when she barely knew how to live in this world. How come I'm not fighting like that? Caroline is so strong, almost fierce, nothing knocks her down for very long. How come I'm not getting back up like she is?

I need to take a little lesson from my "nieces." I need to stay strong throughout all of this, living a life with chronic health problems is like being on a roller coaster all the time. I need to fight when I feel like I can barely survive in the world. When I fall down, I need to have a little cry, get back up, and keep on going.

Jacqueline and Caroline, I hope one day you can read this and know how much you have both changed my life.

The first question I always get asked when people get to know me is "What is Lupus?" The second question I get asked after I explain myself is "How do you go on?" How do I go on? It's a question I ask myself every single day that I live here on this earth. How am I supposed to go on when my body feels like it cannot? How do I manage to live another day when my heart says "It's not worth it." I will tell you a little secret, I don't live for myself.

I don't choose to go on every single day for myself. On my bad days when I can't out of bed, when all I can do is watch TV and whimper to myself, I don't want to be here. I am not an active participant in life. On the nights when I am alone, so exhausted I can't sleep, in so much pain the thought of switching sides seems impossible. I sometimes wish I were dead. But on those days and nights when I feel I cannot go on, I think about you. I think about my Mom, my best friends, my Twitter followers, and complete strangers. I think about a person and I hold their love in my heart. The love allows me to carry on through the pain, the exhaustion, and the cruelty of my illness.

Today is the six year anniversary of my Grandpa's death. On Wednesday, April 28th, 2004, he passed away from diabetes complications, gastric paresis, and pneumonia. He was sick for a good two years but I always felt in my heart that he would pull through. He never did. But before he got sick, he could never express to me enough how proud he was of me. My Grandpa put me on a pedestal that in his eyes, no one else could reach. I remember sitting at dinner with him and his friends, every other sentence out of his mouth would be a compliment about me. I think that man loved me more than he loved himself. At the time I was able to make all of his hopes and dreams for me come true.

Sadly, life for me has not turned out in the way he would have wanted for me. I am not in the military. I am not protecting our country in the same way that he did. I don't wake up in the morning and put on a uniform like he did for so many years of his life. I do know that my Grandpa would be so very proud of me if he could see me today. I may not be the cookie cutter image of what he wanted me to be, but I am me. I am living today. If for nothing else, he would be proud of me for living. When the odds are stacked against me, I choose to go on even if it is for others.

If my Grandpa were here today, he would be sitting with his friends at dinner and he would say "My granddaughter Erika, she goes on no matter what. She stands tall when her illness tells her she can't. She lives when doctors tell her she won't. She never fails to make me proud." I know in my heart that is exactly what he would say.

So in honor of his life, on April 28th, 2010, I am choosing to go on for my Grandpa. He is the one who taught me how to be strong, to go after my goals. Trying to go on every day is my goal and it takes more strength than you can imagine. Thank you Grandpa for instilling those characteristics in me. I always carry your love in my heart. My soul never forgets you. I will forever miss you, Grandpa.

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.

I had a great morning today. I have officially met my first person, in real life, who has lupus. I know many, many people online who have it. But it felt amazing to meet someone in person who I share a connection with. Not only do we share the common bond of lupus, but we also understand each other. We understand the weird twitches that we both get and yet other people stare at us thinking "Are you ok?" We know about the pain and swelling in the joints that lupus causes. We get those nights where you just can't sleep, no matter how hard you try. How all of a sudden you get boiling hot yet on the outside you feel cool as a cucumber. We get the headaches that feel your head is going to implode and Tylenol just doesn't cut it.

We understand each other. As simple as that sounds, it is an amazing feeling. I had the opportunity to meet one of the strongest people I have ever met. Despite all of her chronic conditions, she still keeps going. She loves her family, her friends, and even on the hardest days, she still loves her self. I admire her for that because on my hardest days, I sometimes don't love myself. Maybe that's why I get so grumpy on my worst days? Because I don't like who I am and what lupus has caused me to become? Now don't get me wrong, on most days I like who I am, I love who I am, most parts of course. I love my personality, I love my voice, I love that when I hear music I see music too. I love my eyes and how expressive they can be. I love my freakishly long tongue that I will stick out at the most random moments just to make others laugh. I love a lot of things about me on my good days. But on my bad days, I just don't see much to love.

Despite all of those things, I'm ok with that. I'm ok with the fact that I'm going to have my ups and downs as I live with lupus for the rest of my life. I'm ok with the fact that I'm at risk for developing other auto-immune disorders. I'm ok with the fact that my kidneys (Mr. and Mrs. Piddles as my sister and I call them) could give out when I least expect it. I'm ok with the fact that as I go through life, I'll be forced to take more and more prescriptions to keep going. Why am I ok with this? Because I have my life, a life filled with family who loves and friends who care. And a strong woman who gives me something to hope for, something to wish for, something to live for. You know who you are, thank you. In the last few days you have given me encouragement that I never could have foreseen. Thank you. I hope you too are ok with that.

Sorry for my absence, again! I was out of town this weekend and at a lovely place called Shrinemont. I look forward to this church retreat every year. There is a seminar and a keynote speaker but every year I skip out on the seminar. I love learning, but when I have the choice of being cooped up in a room and being outside with nature, I'm going to choose being outside. Especially when I'm surrounded by trees, flowers, ponds, and of course mountains. I had an amazing time hiking, painting, playing bocce ball, hanging out with some of my favorite people, and taking lots of pictures. It was unusually warm over the weekend, it was almost 90 degrees on Saturday but a surprise rain storm brought the temperatures down.

I've figured out what I want to do for my job to get me readjusted to working again. I want to work for a florist, something to do a few days a week. Arranging flowers seems right up my alley, since it is a creative outlet. All I need now is transportation and of course a florist to hire me. Luckily there are some florists in my area. I'm apprehensive to call and pursue this until I know for sure I will have transportation. Unfortunately, I'm not financially able to purchase a car right now and my Dad sold my old car a while back. I keep hoping that something will work out and some how, some way, I will get a car. That's the only thing holding me back! Too bad a car company isn't reading this. But why would they care about me anyway?

Oh and I almost had a heart attack on Sunday. My Dad asked how my weekend was. Yes, I am just was just as surprised as those of you reading this. Granted he didn't ask how my day was today and it probably won't happen again for quite a while. I understand it's a start, that's how I'm seeing it, but it could also just be a mistake. I wish he could be that nice every day. I know that asking how a person's day is really isn't qualification for being considered nice. But for my Dad, it is. I think he is starting to realize that if he doesn't respect me, he will lose me forever. I deserve to be respected and treated nicely, especially since I work so hard not to upset him.

In other news, on Friday I brought my amazing iPod mini back to life. Yes, the electronic device that died about a month ago was resurrected. On Friday morning, something told me to try to make my iPod work one more time. Lo and behold after many buttons being pressed in no particular order, my iPod came back to life! I had probably pressed the same buttons in the same order about 100 times before. But this time, my iPod decided to "make it work." I think it realized if it didn't wake up, it wouldn't get to go to Shrinemont. Besides, I couldn't fathom going to Shrinemont without my iPod. I have a Shrinemont soundtrack on there too with some favorite songs that match the mood of Shrinemont.

I'm exhausted, Shrinemont always wears me out. I did go for a walk this evening with my Mom. I don't like to go off schedule and luckily the heat wasn't too oppressive today. The lack of humidity helped too! So my Mom and I took a medium length walk once she got off of work. I don't know if walking is really helping me at all, but it's a low impact exercise that doesn't disturb my joints. Plus it's affordable since I don't have money to be joining a gym, nor do I have transportation to a gym!

Sorry I haven't updated in a while! I have been really busy here lately and in between being busy, I've been recovering from being busy. Over the weekend, a good friend of mine got married and I was invited to the wedding. I had such a good time and it was amazing to see some people whom I haven't seen in a while. It was lovely to be able to reconnect. The bride and groom were too cute for words and I am thrilled for the both of them! I was so close to catching the bouquet as well, there was a bet going that I was going to catch it. Unfortunately, the tall people in the world have advantage over the short people, therefore, I lost. Oh well! Another friend of mine is getting married next year, another wedding, another chance to catch the bouquet. Here's a picture of me at the wedding in the beautiful dress my Mom made me.

I've been doing a lot of painting here lately too! I used to try to sell my art but then people lost interest. But if anyone reading this is interested, please let me know. Here is some of my latest art.

Today has been a really good day! My renal ultrasound came back in the clear so that means I probably just have an infection until further notice. I'm on antibiotics so hopefully the inflammation will go down soon. I'm still having some pain that comes and goes. Right now it's coming. I also have some stiffness and pain in my neck but I'm not really concerned for now. I think I've had such a busy day where it is all catching up with me.

This morning I planned on being productive but I wasn't. I was just too tired, I feel like I can't get enough sleep. Plus I feel like I've been running around like a crazy person. I wanted to take a walk but I just couldn't get the motivation up. I really wanted to hang out with my sister and have a paint party. I was completely craving the outdoors and I longed to feel sunlight. Luckily Lindsay agreed and we went to the new cafe that Ellwood Thompson's opened. I had a green tea and Lindsay had a coffee. We sat outside, don't worry, I was fully covered and wore sunscreen. I painted, she piddled on the internet, and then she joined in the painting party. I wanted to give her a little something for her new apartment, here's the masterpiece!

Lindsay also got the brilliant idea that I should starting Twittering. Yes, I'm now part of the Twitter clan. I don't quite understand it but my sister thinks it would be a good way for me to advertise my blog. I'm going to try it and see how it works out for me. On a side note, I feel like my sister and I are growing closer. I think we are able to bond better when we have an activity, like painting. We have completely different thoughts when it comes to shopping, cooking, personal appearance, and just about anything else. But we both try to be artistic and I think we have fun doing it. She mentioned that she felt calmer after painting. I'm saving myself therapy bills by painting, it definitely mellows me out. What stinks though is I can only paint when I feel inspired.

Anyway, I need to go now. I'm really not feeling so well and I think I need to rest. I'll be back to my peppy self tomorrow, don't y'all worry. Oh, and my sister thinks my blog will be more personal if I sign it like I will be signing today.

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.

Sorry for my absence here lately! It's been spring break around the house and I've been quite busy. I'm still exercising, I'm walking an average of 2.5-3 miles a day. I know that it's not a lot but I'm trying and at least I'm getting a routine down. Today I walked 2.57 miles and then I also got on the stationary bike and biked a whopping one mile. Again, it's not a lot, I had to stop every .05 miles so my muscles would stop cramping. It's hard to think a few years ago I was so in shape and riding a bicycle for one mile would have been nothing!

I'm going to a wedding in a week and I have had the hardest time trying to find a dress to wear to it. I didn't really like anything I saw in the stores and I really didn't have much in my closet. So I did the unthinkable for me, I went to the fabric store with my Mom. I hate going to the fabric store because my Mom takes forever. Even if she hasn't found anything she likes the first loop around the store, she will loop back around again. But I figured the only way to find the perfect outfit was to have my Mom make it, it pays to have a seamstress in the family. I started looking at pattern books and I came across the perfect pattern. It reminded me on Audrey Hepburn, it was vintage, and it just said "Erika." Apparently my Mom had been looking at this pattern for me for the past two years and she always thought it would be the perfect dress for me.

As we looked around the fabric store, we couldn't find any fabric that would be appropriate. I wanted a fabric that would be a weight that would be comfortable all year round. I also wanted a color that would work for all seasons. I didn't want anything sparkly or that looked like it belonged on a prom dress. I wanted a pale silver color, a dull satin, something like the fabric my 2003 prom dress was made out of.
Unfortunately the fabric store we were at didn't have anything like it. So we decided to go across the street to the other fabric store where we found the silver fabric a few years ago. Lo and behold they had it, along with the pattern we wanted, and it was on sale! Fabric, pattern, and a new spool of thread cost about $28. If I had to go out and buy the dress in the store, it would probably cost at least $60. But that includes the cost of labor and inflation. In one week, I will have the dress that the woman in the middle of the pattern is wearing. I like the middle dress because the front will lay flatter and provide me with more coverage than the dress that has the two straps across the front. I do like the dress with the two straps but with my figure, it probably wouldn't work to my advantage. I just hope I'm not over dressed for the wedding!

Not much to update on medically. Of course I have had increased joint and muscle pain since I have started the exercise routine. I've had more fatigue which is also to be expected. I just hope it evens out sooner or later! I'm really focused on increasing my strength and endurance. With strength and endurance comes more energy, with energy comes the ability to do a lot of great things. I've got a rheumy appointment the first week in May. That means I get to get lab work done about a week before the appointment. I'll probably get it done in the beginning of the last week in April just to give Quest a while to process it. I've figured out that Quest is much quicker than Lab Corp! Plus when I've gone to Quest, it's been a lot less crowded and the wait has been minimal.

Yesterday I hung out with Michele and we had another paint party! We went to Starbucks because there was a painting there she wanted to copy. I had a painting I needed to finish anyways and it's always more fun to paint with a friend. Last night I also went to the Maundy Thursday service and I saw my Godmother. I told her that I switched internists and she seemed a bit on the concerned side. Of course she had a million questions but it's only because she loves me. I also got the semi compliment of "It's hard to believe that your sick!" Every time I hear that I just want to say "Really? Because I feel like barfing on your shoes." I'm glad I don't look sick but what does sick look like in the first place?

Oh and here's the painting I finished yesterday. If you want it, let me know! It's a 4X4 inch painting and I can ship it anywhere in the U.S. All you have to do is name your price, chances are, I probably won't turn it down! Unless you are offering 50 cents. I know my paintings are quite elementary because I've never had any sort of professional lesson. But I think they add a lot of joy to life!

Please remind me that if ever am able to adopt, that if I have a child, I should always be there for the child. It doesn't matter how old they are, I should always be there. I should do everything in my power to help them, I should never degrade them and make them feel like a bad person. I should love and support them, no matter what. It doesn't matter how hard life is, I will step up to the plate and encourage them.

Right now my life has a whole lot of "I don't know" going on. I don't know what is going to go on with my mouth? I don't know if my kidneys are going to get better or worse? I don't know whether my stomach will lose more of it's happy nerve endings and become completely paralyzed? I just don't know what will happen. Will my heart and lungs be affected by the Lupus as well? I just don't know. I don't know if I will be able to hold a normal full time job? I don't know if I will be well enough every single day to hold a full time job. I know it seems like I'm doing okay, and most of the time I tell myself that I am, but I'm not. I don't let on a whole lot on how I'm feeling. I may look okay and act okay, but chances are, I'm probably not. And on the day when I don't look okay and act okay, I'm feeling like death on toast.

So please remind me, if ever I am lucky enough to adopt, to always support my child. My Mom has done a wonderful job and she is doing the best she can with what little she has. And she knows that I am not the type of person who asks for help unless I truly need it. To think, my Dad has the ability to completely ignore everything that is going on with me. I feel as if he is mad at me because I'm sick a lot. Well, I think he forgets that part of it is genetics and therefore part of it is his fault. Oh well, he will never take the blame for anything. He will go out of his way for everyone else but me. But I'm going to stay positive. With each week that passes, hopefully one "I don't know" will pass as well. Hopefully with time I will be able to say "I do know." I do know one thing that I want, respect from my Dad. Maybe I don't deserve it, maybe I'm not good enough for it, I just don't know. But one of these days, my Dad will respect me and if he doesn't, he is not the man he thinks he is.

In other news, I went walking with my friend Ariel today. We walked a total of 2.354 miles today! I know it doesn't seem like a lot considering we are walking, but it's a lot for us. I have walked a total of 5.002 miles over the past two days! I'm really proud of myself for being able to do this. My heart has acted up but it hasn't been enough to cause me to stop. But my heart will act up no matter what, sitting, standing, walking, running, my heart will go crazy at the drop of a hat.

Tomorrow I get to find out what can be done to fix my mouth. My main concern of course is money, it's something that certainly isn't free flowing around here. I just hope it can be done in a successful way without costing an arm, leg, and maybe a kidney. Y'all send some happy hopes my way and some prayers too if you're into that sort of thing. I can't lose hope now. I know my life is going to always be an uphill battle and this is only the start. I have to stay tough, I have to keep myself strong, I have to remain filled with hope. Not just for the future, but for right here now and now. It takes a lot of hope to live each moment, but I don't think we realize how much it really takes.

Sorry I haven't updated for the past few days. Life has been incredibly busy for me. Let me give you a bit of a recap. I cooked all day long on Friday! For those of you who don't know, I have a special diet that I keep up with. I don't eat processed foods, sugar, dairy, anything acidic, I also try to stay away from red meat. I cook all my meals for the week ahead of time and I portion them into plastic containers. I freeze them so even on days when I don't feel so well, I can still have meal that is safe for my dietary restrictions. I got some lab work back on Friday which has raised some concerns for me and I am hoping to get more details within the coming week.

On Saturday I went to Shockoe Cemetery with the ladies of the UDC chapter I belong to. It was supposed to be a walking tour with historical information about different people who were buried there. Well, one of the ladies from the chapter brought her three children along. The two older children were wired but extremely well behaved. There was also a baby but I steer clear of babies. I kind of went into babysitter mode and hung out with the kids. I thought the mom could use a bit of a break in the first place. The two munchkins kept asking me about the "dead people" and if they could come out of the ground. By the end of the morning the little boy had a huge crush on me, according to the older sister. I got more flowers from that little boy than I think I have gotten in my whole life. Of course they were dandelions, buttercups, and weeds, but it's the thought that counts.

Afterwards my Mom and I met up with some of the ladies for lunch at Capital Ale House. I hadn't been there in a few years. They didn't have any tables that weren't booths in the front of the restaurant, so they let us have the back room to ourselves. I think it was a good thing, our conversations were interesting to say the least! The food was also really good, considering I'm not a fan of red meat, they had other items on the menu that weren't red meat. I just wanted to see if I could digest it with my new medication. I could and it was a bit on the awesome side. Will I now start eating red meat every day? No. But once every couple of years I might divulge. I'm a take it or leave it type of gal and I can definitely go without the red meat.

Today I woke up early and went to church, 3rd Sunday in a row. It was crowded because it was Palm Sunday. I know this coming Sunday will be crowded because it will be Easter. I like Palm Sunday because I make tons of palm crosses and then I hand them out to people. I was making crosses the whole entire service, I know it's not very mature of me. Oh well, old habits die hard. Everyone at church was thrilled to see me, again. I think everyone is going to be thrilled to see me for another couple of months. Eventually the newness of me will wear off.

I also cooked more food and stored it in the freezer today. I found a really awesome sugar free whole wheat pasta that has omega 3 fatty acids in it! I cooked boneless, skinless chicken breasts on my Lean, Mean, Fat Burning machine! I also lightly steamed green beans to go along with my chicken and pasta. After I cooked 6 meals, I ate my lunch and decided I wanted to go for a walk. I'm not supposed to exercise without supervision so I asked my Mom to come with me. We walked all around my neighborhood and then walked up to the drugstore to get some items that were on sale. We walked a total of 2.648 miles! I know that doesn't seem like a lot, but it is for me. I only burned 194.312 calories but of course I wasn't really doing strenuous activity. For me it's not about weight loss, it's about improving my body's well being.

Now I'm at home with a Monk marathon. I am taking time to rehydrate myself but not too quickly. I don't want my kidneys to get unhappy with me! So far I've had 16 ounces of water and I have another 16 ounces to go for now. I am going to hopefully finish a painting this afternoon. I talked to my Mom this afternoon about the whole car thing, since I don't currently have one. I know my Dad will be furious at the thought of having to help me, but he's just going to have to get over it. I don't think he realizes that with a car comes a job, with a job comes money, with money comes me moving out. When I move out, he won't ever have to see me ever again if he doesn't want to. I'm sure that will make him very happy. I still need a job so if anyone needs someone to answer a phone and do secretarial work, I'm your gal!

On Tuesday I have an appointment with the periodontist my insurance is covering me to see. I hope he will be able to do something for my mouth considering I don't have much to work with. I'm feeling a bit nervous that he will say "Sorry, the Lupus has torn up your mouth, there's no point in fixing it because it will get torn up again." So y'all start hoping and praying he can fix my mouth, that insurance will cover it, that it won't take forever, and then I can start getting my life together without many more hassles. I know I'm asking for a lot and I'm really sorry. I just wish that it could be simpler, like I go to a hospital to get the surgery done, they fix my whole entire mouth in an OR, they stick a feeding tube down my nose and into my stomach, I recoup in the hospital for a few days, and then I go home. But of course there is no guarantee the grafts will take, so that's why they probably don't do them all at once!

I hope everyone is having a fabulous weekend! I just can't believe I walked as far as I did. I missed having my i-pod streaming music into my ears. I'm sure I'll be paying for today tomorrow but hopefully it will be worth it. I'm excited about getting back to the Erika I used to be!

For those of you who don't understand Dutch, the title is "It has gone kaputt!" Kaput basically means death, but not like human. For example, this evening I was making a gigantic pot of tea so I could make my herbal ice tea. I noticed the kettle was leaking from underneath the handle. This troubled my Mother so, she has never had to buy a tea kettle before. The one we have was a hand me down, my Granny received it as a gift long ago, then she gave it to my Mother. It's Corningwear and she loves it because of the German print on the sides. When I saw the "I'm going to fix it" wheels turning in her head, I told her it couldn't be fixed with gorilla glue or duct tape. Mother looked awfully crest fallen.

Yesterday I was thinking to myself that things were going fairly good for me medically. Silly me spoke too soon! I met with my new Primary Care Physician this morning and it feels like a good fit. She wanted me to get one of my prescriptions switched over to another doctor. I just called CVS and they got the request and filled my script! I was so worried that the other doctor wouldn't fill it for some odd reason. But based on my medical history, it's a vital pill, it allows me to eat, it calms me down, and it can help me to sleep. It's a miracle pill for me. But I have a lot of miracle pills in my stash.

Anyways, once I got home from my appointment, I started to feel a tad bit cruddy. My bp was 90/50 at the doctor's office. When I got home situated, it had dropped to 90/40. I was freezing cold, my temperature was going between 96 and 96.5 degrees Fahrenheit. My normal temperature is around 99 degrees Fahrenheit so this was a bit on the low side for me. My resting pulse would jump from 80 bpm to 140 bpm which is a common occurrence for someone with inappropriate sinus tachycardia. Needless to say, I was feeling quiet pathetic and my body was having a bit of a hissy fit. It had to prove how dissatisfied it was with me by making me pass out twice. Luckily it happened in my room, when I stood up, so there wasn't much for me to hit my head on and I landed on carpet. I can't tell if I passed out because of the low blood pressure or from the tachycardia. IST can cause syncope but so can blood pressure problems. Another mystery of my life!

I'm feeling better but still feel a little on the wonky side. I've got more color in my face, I was looking a bit jaundiced earlier. Again, it could be a side effect from the diltiazem or it might mean lupus starting to wreck havoc. I'm not looking jaundiced anymore so that's a good sign. Plus I've got some color back in my face because earlier I was looking pale as a ghost. I'm hoping tomorrow will be better.

I didn't get around to doing the dishes like my Dad wanted me to do. I was afraid he was going to be mad at me but I left him a note. I explained that I was sick but I didn't expect him to understand. He tends understands for a couple of days, then he forgets, and he goes back to being inconsiderate. Mom says he is starting to get over the weekend, which is good, because he isn't acting like it. When I came downstairs to make my oatmeal this morning, he didn't even say hello to me when he came in the kitchen. He pretended I wasn't even there. I didn't bother speaking to him because he usually only mumbles under his breath to me.

Well I'm watching an awesome episode of House and I'm exhausted. The past few days have been rough and that has worn me down to the core. I just want to thank everyone who reads this, in some way, each of you has supported me. Y'all rock!

I don't normally talk about my family because I am a fiercely private person. But today, I have been pushed to my limit. The past few years have been nothing but a battle between my father and I. It seems like no matter what I do, no matter how hard I try, it is never good enough for him. I try to be a good daughter, I am mostly always considerate and I attempt to be caring. But it is hard to be caring towards a man who shows no hint of happiness towards you. It's hard to feel compassion for a person who only looks at you with the coldest of eyes. My Mom frequently reminds me that "He is the only Dad I have." I'm well aware of that but yet it doesn't inspire much within my heart.

I will always love my Dad, deep inside my heart, for one reason and one reason only, because it is the right thing to do. I do not like him very much, how could I? How could I like a man who thinks I'm worthless? How could I like someone who dislikes me so much? How could I like a person who has instilled fear in me? I'm terrified of his outbursts, I despise being yelled and I especially hate his names for me. Honestly, I don't think he knows how much his words hurt me. He is one of the few people who is capable of making me cry, and I am not a crier. His words stab at my heart, his outbursts shake me to my core.

Eleanor Roosevelt said "No one can make you feel inferior without your permission." Well, my Dad has mastered that art. He has the ability to make me feel so low, worthless, and terrible about myself. It's as if in a matter of minutes he has the ability to brainwash me. When he gets mad at me, I feel like a terrible person when it should be him who feels terrible. I do everything in my power to never make him upset at me. I walk on egg shells every single day. If he is doing something, I am careful not to disturb him. If he needs help with something, I try to do it in a reasonable amount of time. I'm courteous and amicable but I try to keep the conversation to a minimum. I know when he sees me, it starts a ember of dislike towards me. He has made it perfectly clear that he does not like having me around. Despite those things, I try to be a good daughter.

I don't think he understands what it's like to live with a chronic illness either. My Mom understands, she has lived with people who have been constantly sick. But my Dad, he doesn't get it, he will never understand what it is like to be in my shoes. He will never have to find the strength within himself to keep going when the odds are stacked against him. I also hope that he never, ever gets sick in the way that I do. But if he does, I hope he does not have his family persecute him in the ways I have experienced. I could never treat him in the way he has treated me. Maybe it's because I have more respect for him than he has for me? It doesn't matter how much I dislike a person, I will always try to respect them.

Unfortunately right now, I am at the end of my wits. I have cried, cried, and cried today. I'm not talking about a tiny tear, I'm speaking of giant sobs. Not only have my Dad's words beaten me up, but they keep replaying in my head. I will never understand how a man can show more compassion to the students at his school than he does for his own daughter. I will never understand how someone can hate their own daughter so much. I will never understand how he makes it seem like he is the perfect Dad when he is out in public. It hurts me so much to know that I have disappointed him so much over things that I had no control over. It hurts me more seeing him every day, knowing that he cannot stand to have me in his presence.

I've got too many financial troubles to move out now. Stupid medical expenses. But once I get myself repaired, once I get some money saved in the bank for emergency medical expenses, I'm moving out. It will probably take me a couple of years, that means I get to live in hell for the time being. But eventually I will be on my own, I won't have to tolerate my Dad's hateful look towards me. I will be on my own and he will never, ever be allowed to get mad at me in the way he does. When I have my own place again, I will feel comfortable in it. I will never be made to feel unwelcome ever again.

Oh and I have to say through all of this, my Mom has been a saint. I feel as if she gets stuck in the middle but that's what happens in situations like these.