Archives For learning to live with lupus

The Year of Pie

January 24, 2014 — Leave a comment

I absolutely love baking pies! And it goes without saying that I absolutely love eating pie!

Think about it…

Pie is just plain awesome! It brings a sense of comfort, and a comfy home feeling.

What is with all the cupcake love these days? Yes, I love a good red velvet cupcake, but it certainly doesn’t bring the nostalgia of a homemade pie! Am I right?

Look out world, I'm baking some pie!

Look out world, I’m baking some pie!

Ever since I can remember I was the kid that watched the cooking channels for all the baking shows. Besides making me crave what they were making, it would get my creative wheels turning. From then on I have had this insane desire to be an incredible baker.

I have tried my hand at baking the cool decorative cakes and cupcakes. While they turn out yummy (most of the time), they don’t always turn out pretty. Not to mention the immense frustration I get from my lack of skill with cake decorating. My kitchen ends up destroyed… flour everywhere, not a single pan clean in the kitchen and a lopsided cake that was definitely prettier in my head than on my plate.

But pie, ahhh that is another story. Last night I was creating a new recipe for my sister’s birthday and let me tell you I was loving every minute of it. Don’t get me wrong, I have had my failed attempts at recipes. But that is part of getting better, you learn from experience. I just feel like I am in my element when I work with pies. Oh, did I mention the pie that I made was a mix between an Oreo pie and a french silk? I’m thinking of calling it Oreo silk, or silky Oreo…

Get ready 2014, I’m baking lots of pies this year!

My forever accessory to life

My forever accessory to life

When my face is rash free, my joints are treating me nice and my fingers don’t go crazy white I can forget that I have an illness. Mostly when I have had weeks and even months of feeling better than usual. The thing about Lupus is that majority of the time it doesn’t show through on the outside. I look just like everyone else, I seem to be healthy but reality is far from that. There are times when I look into the mirror and think back to that moment I heard “You have Lupus” and find myself doubting those very words. Could it really be true? I have felt so good lately. I look okay. Maybe it was all in my head. But those thoughts come to a sudden jolt when I am reminded of my disease every day by my twice-a-day pill organizer. What twenty-something has a pill organizer? Just those that need one..

The truth is I am not in denial of my diagnosis. I’m actually okay with it. But sometimes I find myself looking and feeling like I used to and then everything becomes surreal. When I actually stop to think about those words “You have Lupus” it’s hard to believe. Not because I wish it weren’t so or because I fear what is ahead. It’s hard to believe because who thinks that they will have their world altered by words like that? No one. I seem to be healthy, and sometimes I even feel that way. But then I get reminded of just how invisible this illness really is when I wake up with achy joints and the beautiful butterfly rash to accent my face for the next several days and my stark white fingers that are my winter accessory. Truthfully it’s as simple as this… I don’t think about my disease all the time and if I am having several good days in a row I forget about this part of my life, that I have Lupus. But, I think that is a good thing because it’s pretty great that people don’t see me and see my illness. I will talk to people about it with all honesty, but I like knowing that it doesn’t have to be me. I think it’s okay to forget about your diagnosis because every day when I take my morning and evening medicine that is enough of a reminder. I don’t need to dwell on it.

I do not fear what is ahead. Rain or shine, God Has plans far greater than mine, and that includes my disease!

The following is a guest post by Mandy Karo. I first met Mandy in college when we both joined Pi Zeta Phi during college. After hearing about my diagnosis Mandy reached out to me as she is also living with Lupus. I am so thrilled to have her share her story. She has wonderful insight, show her some love! 

Middle school is a tough time for most kids. When I was in eighth grade, I was in the midst of a very difficult transition with my two best friends. We had been inseparable in fifth, sixth, and seventh grade. I remember the gym teacher saying weMandy's guest post were “joined at the hip.” But in eighth grade, they were drifting away from me and becoming a part of the popular girls group. For a young teen this felt like the ultimate abandonment and rejection. I remember feeling a lot of loneliness, stress, and anger. It was in the middle of this drama that something much worse was piled on to make my teen years even harder. I was diagnosed with Lupus.

I had been having odd symptoms for a while. In sixth grade I started having strange stomach aches. The doctors thought I might have ulcers so I had to have a stomach x-ray. It was awful—the stuff you have to drink so they can x-ray you is disgusting! There were no ulcers found so life went on. In seventh grade I began feeling tired in the afternoons. But what happened in eighth grade was what led to my diagnosis. I started getting purple spots on my feet and ankles, especially when I was upset or stressed out. My feet and ankles would also swell up. At first we thought maybe I was allergic to the laundry detergent my mom used but switching it didn’t help. The worst time was when one of my teachers accidentally ran over my ankle with a TV cart. The purple spots showed up and I got so swollen I couldn’t walk on that foot. It hurt to put shoes on.

When we showed my family doctor the spots, she was perplexed so she looked up what it could be. She named off a number of possibilities and one of them was Lupus. I really had no idea what Lupus was, but I had heard the name before, and I knew it was some sort of serious disease. I started to cry. We were sent to Children’s Hospital in Denver to see a rheumatologist. They did blood work and the doctor asked me a few questions about my symptoms. Then just like that, he told me I had Lupus, gave me some packets about it, and prescribed medications for me to take. It felt odd that it was so quick. Even my parents continued on acting normal. Didn’t they know that I was just diagnosed with an awful, potentially life-threatening disease? Shouldn’t we all be crying or yelling or something? I know that they were just trying not to freak me out. Inside they were scared too.

I’ve been diagnosed with Lupus for thirteen years now. I deal with fatigue, unexplained fever, swollen joints or muscles, sensitivity to the sun, susceptibility to sickness, and the spots (which are called purpura and are caused by bleeding underneath the skin). The medication I take has helped me in controlling the flares. I know I am actually very lucky because many people with Lupus have much worse symptoms, and thankfully my symptoms are not life threatening.

There are a lot of questions that come with having Lupus. Will my symptoms get worse? Will I be able to have a healthy pregnancy? Will I have the energy for a full time job? Will I have the energy to raise children? Will the men I date be able to handle the fact that I have Lupus or will it make them want to head for the hills? The real question becomes, what do I do with all of these fears and anxieties?

When any sort of fear comes into our lives, no matter what it is, we must remember the power of God. God is bigger and stronger than any scary thing that looms in our path. Just imagine the universe in its incredible vastness and remember that God created it! That is power. Then remember that he loves you. When something bad happens in life, we might be tempted to ask if God loves us. If God loves me, why did he allow me to get a disease? But that question is focused on the physical, and God focuses on the spiritual. Yes, bad things happen on this earth. But God allowed his son to die for us in order that we might have a new life. That is love. This world is temporary, and we must use the struggles that come with it to strengthen our relationship with God.