My Cravings

It never ceases to amaze me when you go on a "diet", as to what I crave. When I first got diagnosed with a cheese allergy, the only thing I craved was mac n' cheese. Ah, how much I miss it! It's the one thing in the world that I still struggle with watching people eat to this day. I don't mind watching people eat pizza believe it or not. I definitely would like to be able to eat that cheesey goodness again, but I can handle watching people eat it. It's mac n' cheese that I literally can't watch. The smell of it, the feel of it....Hmmmm.

But since my GF diet started the things I have been craving are as follows:
--Oreos
--The Angel Hair spaghetti from Walmart...the one that costs a whopping 94 cents.
--Tuna Helper, brocilli kind.
--Hot dog WITH a bun :)

And....that's actuallly all of it. There's some things I'd like to be able to eat, but those are the three biggies. The ones that I went to bed dreaming of one day being able to eat.

Well, at my second opinion appointment my doctor raised a very valid point. She said that in order to be 100% sure it's the GF diet that is helping relieve my symptoms, and not some weird coincidence, I need to go onto a regular diet for a month...and then go on the GF diet again for a month. And repeat this process twice, all the while taking a very detailed journal of my symptoms.

So here I am. Back on a regular diet. And what have I eaten today? Had tuna helper for lunch today, and am now devouring some very yummy spaghetti. :-) I had a few oreos after breakfast. I also have plans to go to a pot luck with some friends....in which there will be yummy hotdogs. With buns. :-)

My Lie. a.k.a...My Life.

To the people who care about me most, and whom I consider to be my friends:

I haven't been completely honest with you when you ask me how I'm feeling. I lack the courage to tell you the truth in person, but I still want to share with you. So I wrote this letter. Please read it.

I'm angry. I hate what this is doing to me. I hate that I wake up with a handful of hair on my pillow every morning. Yeah, I lied when I said it was just every now and then. Some days are better than others, but it still happens every day. I look in the mirror every morning, not to check and see whether or not I have a zit like I used to, but to make sure the thinning of my hair isn't noticeable. I spend 20 more minutes a day now fixing my hair than what I used to do. I want to make sure that you can't tell my hair is falling out one beautiful curly strand at a time.

I hate that I can't tie my shoes most days because my feet start to swell and it hurts. Yeah, I said that the GF diet is helping...and it is. But not as much as I've led you to believe.

I hate that I honestly don't know who to call right now after midnight to come give me a hug. I know there's at least six people who would drop everything and come over here ASAP if I called and asked, but I feel silly for crying over this. There's so many other people hurting in the world, who am I to make you go out of your way to come comfort me?

I'm scared about my second opinion appointment. I'm afraid she'll tell me it's something worse than Lupus. That I have cancer, or am going to die. I want to live a normal life. God, just let me live a normal life.

I feel alone in my suffering. Immediately after my diagnosis, I was flooded with "praying for you" cards, and "hope you feel better soon" stuff, I even had one person pay my rent for the month I was too sick to work. I know I am loved. But I love my friends as well. And I don't want them to have to suffer along with me.

So when you ask me "how are you doing today?" I lie. I lie to you not because I want to, but because I feel like I have to. I feel like if I were to tell you how I'm feeling, you wouldn't be able to handle it. I feel like if I told you the truth, all I'd get from you is a sympathy look. I hate that look with a passion. I don't want your sympathy. I want your friendship. I want you to call me, and to hang out with me. I want you to make me forget about my insecurities for just one night. I want to have fun, and to pretend to be a normal 22 year old female.

But I'm not normal. I'm sick.

There's five stages of grief. Denial, Anger, Bargaining, Depression, and Acceptance.

My denial happened when I first started having problems. It ended the day I woke up with legs too swollen and stiff to get out of my bed. I was stuck there until 1 in the afternoon before I figured out a way to get off of my top bunk. I used a sheet and tied it around my waist to levy myself down.

Right after I got diagnosed, my parent's met me in the parking lot. They gave me a hug. And then took me out to eat. My anger started when I was reading to them out-loud the "pamphlets" my rheumatologist gave me. My anger continued to swell to the point that I could barely stand it anymore. I avoided church, I avoided my friends, and I especially avoided God.

There was one point when I pulled into chick-fil-a's parking lot because I was crying too hard to see the road. I sat in my car and screamed at God telling Him how unfair he was to put me through this. How I didn't deserve this, how I'm a decent human being.

I'd be lying to you if I told you there are no longer moments when I get angry. If I stop and let myself dwell on it long enough, then I can feel my anger swell. When I hear someone tell me "Amanda, I'm so sorry this is happening to you. You're such a sweet girl" I usually get angry.

But today, today someone told me that and I did not feel anger. All I felt was sadness. I am mourning the loss of what I could have been. What I could have accomplished if I no longer had the label "Lupus patient" attached to me. The places I could have gone if I had no food allergies. The person I could have become. The people I could have reached. The things I could have done if I still had my old energy level.

I am not the same Amanda I was 7 months ago. I'm not in denial over whether or not my sore knee is something to be worried about. I am no longer ignoring the excess amount of hair that comes out when I take a shower. I am no longer attributing my fatigue to working too much. I no longer think that my swollen legs are because of bad shoes or being on my feet all day.

You want to know a secret? Earlier this week I got curious as to how much hair I was losing. So after I took a shower I scooped up all of my hair, and instead of throwing it away I wrapped a tissue around it and put it in my room. Then later when I started to brush my hair, I took extra care to make sure I got every strand. And then I put it into the bag. I carried that bag around with me all day long. Tried to make sure I caught every spare strand that fell off of my scalp. By the end of the day, I had to use a second bag. Both bags are now in my room.

I started counting the strands of my gorgeous hair. I've never felt so ugly and so completely hopeless before.

I'm sick. I have Lupus.

And I am in no way, shape, or form okay with this. I am mourning the loss of Aunt Tonabell's home-cooked bread. I miss waking up in the mornings without stiff joints. I miss the days I could vigorously brush my hair without having to clean it out every 6 strokes because my lost hair is covering the bristles. I miss those days.

I miss going to bed with the only major thought on my mind whether the next day would bring good tennis-playing weather. I miss being able to do all of my grocery shopping in one store. I miss the simplicity my life used to have.

I miss feeling accepted by the people around me. I don't like being gossiped about. I don't like the questions of how I am feeling. I don't like it because it means I'm no longer the same person I was before this diagnosis. I'm different. And I don't feel like it's a good different.

My life has become so much more complicated in the past few months. In fact, it's so complicated I don't even know how to describe it. The simplest way would probably be to say that I don't trust you anymore. Not the same way I used to.

In order to tell you everything on my mind, I'd have to share more of myself than what you are ready to accept. What I'm going through is a process, and sometimes I don't think you are walking through this process with me. So therefore, I don't tell you. Not because I don't think you care, but rather because I don't think you are ready to hear yet.

The only problem with this is that I am hurting. I want to tell someone everything on my mind. I share some with everyone whom I trust, but I only share bits and pieces. I pick and choose what to tell you.

I beg of you, walk through this process with me. I want a crying buddy. But I love you too much to hurt you. I know you are ready to listen, but I don't think you are ready to hear. So until you are ready to hear....to truly hear what I'm feeling, I will only tell you bits and pieces. I will continue living my lie. I just pray that you love me enough to one day gather enough courage to be my crying buddy.

"Some of the greatest battles will be fought within the silent chambers of your own soul."

--Ezra Taft Benson

Meditation

So here I sit. It's 11:20 at night, and I have so many papers, notebooks, pencils, highlighters, and clothing around me I can't move. And I'm not entirely sure if I want to move at the moment to be completely honest. I've spent the last 4 hours (with the exception of a quick walk around the neighborhood) organizing a notebook filled with: my symptoms; research on GF diets; research on: Lupus, Sjodren's Syndrome, Raynaud's Phenomenon, and Celiac's Disease; and e-mails to one of my nurse friends discussing my medical condition and doctor's appointments. I'm pooped to say the least.

Some days, like today, it feels like the pain I felt months ago was all part of a bad dream. It's only when I close my eyes and think back to those painful days that I remember. Days like today give me hope for the future. They make me wish for a cure for Lupus, they make me plan 5k races and walk-a-thons for Lupus awareness. They are good for me, good for my outlook on life. But they also can be detrimental. They make me want to make plans for the fall that will more than likely throw me into a flare-up in speedy time. They make me want to take that photography job, and work 12 hours days/7 days a week, simply because that's been my dream since I was a kid. They make me want to ditch school and travel overseas to study Spanish somewhere, completely immersing myself in the culture.

Days like today are both good and bad. They are the days that make me think I was crazy 5 months ago for thinking I was in pain. They make me almost forget what it felt like when I was at my worst.

But I still remember. I remember the day I had to call a friend to come drag my sorry self out of bed, because my legs were too swollen and stiff. I remember the day I got diagnosed with Lupus. I remember calling my Mom immediately after walking out of the doctor's office doors, and I remember pulling off into the chick-fil-a parking lot because my tears obstructed my vision. I remember the day I felt like a complete idiot because I left all of my groceries at Wal-mart, 3 times. I remember.

I remember the day I failed a Spanish test, because even though I had studied my heart out....I couldn't remember the words. I remember feeling like a failure.

I remember the day I turned in my running shoes for clogs because I couldn't get my swollen feet inside the stupid shoes. I remember.

I remember going to that support group and being told to "off myself" because life at my age with Lupus wasn't worth living. I remember the anger I felt after that. I remember how that one lady somehow managed to catch hold of my stubborn self, my inner strength, and pull it straight to the surface.

I remember how after that day I started fighting. I started researching. I remember.

And now here I sit, amongst all of the research I have gathered throughout the past 6 months. And I feel overwhelmed. It doesn't matter that I've read all of stuff stuff 3 times, and some I have practically memorized. It's just soooo much stuff. My GF book is off to my far left, buried under my newest binder designated to take to my 2nd opinion appointment....my pen somehow rolled under my tush. Hopefully it won't spill ink anywhere, especially not on my pants. My cellphone is off to my far right, my old test results are off to my right as well. And there are highlighters, well...everywhere. There's a laundry basket of clean clothes that is stratigically placed directly behind my computer screen. I am a firm believer in "outta sight, outta mind". lol. And I knew I wouldn't be able to focus on this if I saw there was something else that needed to be done.

But here I am. Still fighting. My inner strength is still at the top, and I'm still fighting.

I'm fighting to find out what is wrong with me. Because until I know, it seems like there's nothing I can do to fix it. Give me meds, give me a life-time dietary change, give me chemo, give me amputation....I don't care. But I need to know what's wrong so I can be proactive in fixing it. I need to hear from someone else that it's Lupus.

I can't wait until Friday. Come soon, my dear Friend.

"Ability is what you are capable of doing. Motivation determines what you do. Attitude determines how well you do it."

--Lou Holtz