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.


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.