Wednesday, November 20, 2013

Lupus: My Journey - Part 1

I was sitting in American History my sophomore year of high school, concentrating on that day's pop quiz, when my right hand started feeling ice cold. Perplexed by the weird sensation, I stopped to look at my hand. All fingers from the knuckles up, were black. Being in the middle of the classic teenager syndrome, "I'm invincible," I chucked to myself. Ha! Look at my black hand! By the completion of the quiz, it was darker and common sense started to kick in. This can't be normal, right? Still, not understanding the possible seriousness, I walked up to my teacher and casually said, "Hey, look! My fingers are black. Isn't that cool?"

He stared at my hand, and back up at me like my casual reaction was completely ridiculous. As he picked up the phone, he said, "I'm calling the nurse. Get to the office NOW." Honestly, I was taken back by the reaction. What's the big deal? I feel fine. The nurse's reaction was even more severe. My mom was called and I was headed directly to the hospital.

My doctor back home was a friend of the family, and met me out in the waiting room. He took one look at my hand, started mumbling a bunch of medical terms to my mom and told her I was being sent to Billings, MT immediately. It wasn't until this point that fear and reality started to set in. When I woke up that morning, I was a typical 15 year old teenager. When I went to bed that evening, I was someone completely different.

After only 5 minutes with the doctor's in Billings, I started to receive some answers, though none that were reassuring. I have Reynauds. While scary at times, and I'm going to have to be careful, I can handle this. Those were the things going through my mind. However, as I started giving more of my family history and revealing that I have Fibromyalgia, the doctor's face started to look more and more concerned. Then, I heard the one little word that would turn my life upside down, Lupus.

Lupus is difficult to diagnose. It's a sneaky disease. There are times that Lupus appears to be non existent, even when it comes to labs. For this reason, I started the year long process of official diagnosis. Every couple of months, I went back to visit my Rheumatologist. I'd spend an hour down in the lab being poked prodded to check my levels. Only one of these visits in a years time came back negative for Lupus, all others were positive.

At the end of the year, a sixteen year old girl sat in her doctor's office and heard the words she'd dreaded, "You have Lupus." Honestly, after that one sentence, my mind shut off. I didn't want to hear about the disease. I didn't want to hear what he was telling me. I wanted to pretend this year had never happened. I heard a few words, "dialysis, adoption, miscarriages, pain management, immune system." All words that terrified me.

Words that would terrify anyone.

Words that turned my world upside down. Words that could change all the plans I had for my future. How do I go on from here?

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I've lived in denial off and on for over 10 years. During my high risk pregnancy and delivery, I had to start coming to terms with my medical condition. A condition I had known about for over a decade, but refused to accept. Until the past 2 years, I went through an amazing 4 year period with no flare ups. It made it easy for me to forget that my body is attacking itself inside. As the flare ups have returned, and my immune system has dropped, I'm finally dealing with emotions that I shut off in the doctor's office that day. 

I've struggled internally with this for two years. Never talking about it or addressing it to any of my loved ones. Mainly because, I don't quite understand my own feelings. Partly because I never wanted to be one of those people constantly complaining. 

However, I've decided that going through the process and talking about it, is something I need to do for myself. So, I've decided to do a series on my journey with Lupus.

Please understand that in no way am I feeling sorry for myself or thinking I have it rough. That is not what this is about. I just hope that by telling my story, I might be able to help myself and in turn, maybe help anyone who had been through something similar.

6 comments:

  1. Wow, Tiffany! I'm so sorry. Have you looked into finding a Lupus support group? I'm sure they must exist. In person would be way better than via the internet.

    MAJOR kudos to you, for taking the blinders off, though, and starting to deal with it, emotionally. You are a super star, my dear.

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  2. Thank you so much for sharing this with us. I agree with Gwen, you are a super star!

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  3. Girl, you are so amazing for opening yourself and sharing a really vulnerable part of your story. I have a family member with Lupus and know it can be a really tricky disease to handle, especially because it can vary so much from person to person.

    I'm sure you've learned more than ever since starting this journey that YOU are stronger than you think you are, including both weight loss AND lupus. Major hugs to you today lady :)

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  4. You're amazing woman in so many ways. Thank you so much for sharing your story, I look forward to reading the rest of your journey with Lupus.

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  5. Tiffany! I can't believe I mised you sharing this! For some reason some of my favorite blogs became hidden on my reader. Thank you for sharing! Please don't feel like you have to add that sentence at the end! You are not feeling sorry for yourself, you are sharing your story - and it's not always roses, just like everyone else! You know I have a personal connection to Lupus so I, personally, get so much out of your writing of your experiences. The disease is such a mystery to me and I know people who live with it would rather pretend it doesn't exist, but I want to hear about how they are feeling so I can figure out small ways to support, encourage, and help in small ways if I can. Thank you for sharing and I look forward to more posts!

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