Archives For symptoms of lupus

‘Tis the Season

November 29, 2013 — Leave a comment

Thanksgiving might be over, but why do we have to wait an entire year just to reflect on the things that we are thankful for? I know that I may not always remember, but I try every Thursday to post something I am thankful for, you might have seen me use #ThankfulThursday on occasion. I want to exhibit a spirit of gratitude all year-long instead of just waiting for the season to come around. So even though it’s the day after Thanksgiving, here are a few things that I am thankful.

Coffee mugs that put a smile on my face every morning

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My child and his love for all things Star Wars

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Finally knowing why my hands do this…

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Seeing the joy in my child’s eyes when he met Mickey Mouse

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Growing up with an amazing family… 

And finding super awesome old pictures of your childhood, that I am sure they will be so grateful I posted! :) 

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Having married my high school sweetheart and getting to walk through life with the most kind, patient and loving person by my side

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For having a husband who wants to play super heroes with our child. 

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For that moment when my son saw the ocean for the first time

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What The Future Holds

October 7, 2013 — Leave a comment

Apparently Mars will be colonized. Seriously! In 2023 the colonists will leave with a one way tickets to Mars. Wow! My heart races as I type those words. Colonize Mars. I am certain that if I cried the last time I flew I would probably be hysterical or passed out flying through space. Ugh! That is something I have zero desire to do! I love a good adventure, in fact I am a nomad at heart. But, a one way ticket to another planet… no thanks!

blog pictureWe have all watched movie after movie of Earth colonizing other planets. It’s now not just a possibility but a reality! This is just crazy! My child is going to grow up in a world where Pluto doesn’t know whether it is a planet and people are living on Mars. WHAT? It’s a totally different world than what I grew up in. Everything will be at his fingertips, and there will be an entire population making their own world far beyond what was a possibility when I was a child. Hashtags that document life events, Facebook that has become the new family photo album, whatever question you might have answered with the tiny phone in your pocket. I have no idea what his world will look like by the time 2023 approaches and people are launching into space headed towards their new lives.

Our world is rapidly changing and what was once my world will probably look more like the dark ages to him. I can see it now,

“Mom, you know you only have to think my name and your phone will dial it. You’re making this harder than it has to be.”

“Well sweetie in my day we actually had to dial on a touch screen phone.”

“What is dialing?”

I know, I am exaggerating a little. But, the world is ever-changing and when my son is my age he will probably be having the same revolutionizing thoughts that I am having…What will the world look like in the future? What kind of world will my kids grow up in?

It’s probably safe to say that I am not the first parent or the first generation to think that the world is changing faster than I can keep up. And I am sure that I won’t be the last to feel this way.

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.

Lupus. It’s a word we all know but a disease most know so little about. I was once a part of the crowd that knew nothing about this invisible illness, and then I found  out I had it! There is no simple way of getting diagnosed. In fact this was a four-year process and I didn’t even realize it! When you keep getting misdiagnosed but have faith that the doctors treating you are accurate then it doesn’t really cross your mind that something much more could be going on. It all started one night, four years ago when I awoke in a panic. My heart was racing, my chest felt so tight and painful that I could hardly breath. I could have sworn I was having a heart attack! I can still remember how scared I was, I’ve never felt that kind of fear before. We went to the ER only to be told that my cartilage in my chest was inflamed. They chalked it up to exercising. I was told to simply take some ibuprofen and I would get along just fine.

feetAround this same time I also had a rash on my torso. I went to several different doctors, all of which gave me a different answer, different medicine and nothing proved to work. I was beginning to feel like I was just imagining things. But, I didn’t really know what else to do other than maybe find a doctor that could not only give me answers, but that I could trust.

During all this time my chest pain would return for days or weeks at a time. Eventually I got to the point where I felt like I couldn’t breath so I went to our new family doctor and he started me out on an inhaler to see how it worked and brought me in for follow-up appointments. I was so appreciative of a doctor that cared for his patients and followed up with them. I wasn’t on the inhaler very long and wasn’t fully convinced that it worked. Then I got pregnant and my symptoms improved, which can happen with Lupus patience.

A few months after having my son my symptoms began to come back along with a new one that I had never seen before. Every time I got cold my fingers would turn stark white and stay that way for a very long time. They would then go painfully numb as the blood worked its way back in. This was a pretty scary thing to see. At first I thought it was just poor circulation but I really felt like something wasn’t exactly right. So, I went in to see my family doctor and showed him a picture on my phone of what my fingers were doing. He immediately called for blood work.

Within a week I had my results back where I was told that they were referring me to a rheumatologist. Everything finally came together at that first appointment. The past four years of chest pains was Lupus, the rash was Lupus, the painful shortness of breath was Lupus, my fingers turning white was Lupus. I didn’t even realize during all this time that I was being misdiagnosed, thankfully I found a doctor that called for the blood work.

This is a problem for so many with Lupus because it’s symptoms mimic that of so many other diseases. No one blood test can diagnose it either. It takes blood work, examining your symptoms and your history. Because of these reasons it can take years before a person is diagnosed, for me it took four years and I didn’t even know it!

So much changed after I received my diagnosis. I am learning my illness and hoping to not only spread awareness so others will not go misdiagnosed, but to spread a little hope and inspiration to others in similar circumstance, because Lupus does not define me!

If you would like to join my team and walk a mile in the annual Lupus Walk or donate to the cause, you can do so by following this link.

Thank you for helping me in my fight with Lupus!