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Victoria’s Fight Like a Girl Story (Lupus)

Victoria's Story (Lupus) Hey there! My name is Victoria; I fight like a girl against multiple illnesses every day. My friends would describe me as a sweet, strong, caring, loving, bubbly girl. From the outside you’d never guess the battles I have won or the ones I am fighting today. I have lupus, Raynaud’s, endometriosis, asthma, arthritis, gall bladder disease, slight depression, possible fibromyalgia, restless leg syndrome, and slight anxiety. One of the toughest roads I have traveled so far was the road to diagnosis.

When I became sick isn’t clear. I always had infections and viruses since I was only a few months old. Looking back at pictures I now notice the lovely butterfly rash blanketing my face. The first flare I recall was at age nine. It was mainly abdomen issues accompanied by “growing” pains and lots of fevers. I was rushed to the hospital because they suspected appendicitis every few weeks. No one knew what was wrong with me. One of my doctors told me, “Victoria your immune system isn’t like everyone else’s.” I had no clue what that meant, maybe I’m weird. Eventually the symptoms subsided after a few months. Every few years I’d still visit the hospital for “appendicitis.”

My next flare began after a slight fall off a rock in my back yard; it is only a foot off the ground. From that moment on I have had pain in my feet, ankles, and back. Of course I had to visit more doctors and once again no one knew what was wrong. They knew something was wrong, but all they told me was I am weird go see this doctor or that doctor. It was such a vicious cycle that  didn’t get me any closer to answers. I just wanted to be a normal kid so I stopped talking about my pain. Most days my pain was bearable; the bad days I would cover with a smile.

Things got worse when I hit high school. Over the course of four years I have had four surgeries. On top of that I was in a car accident with my mom, shortly after I was put on medication that could have potentially killed me. After that point everything began to spiral out of control. My pain seemed to increase, fevers began daily, I started to take notice of rashes, and my fatigued increased. After almost two years of: half a dozen MRIS, dozens of CAT scans, and ultrasounds, a bone scan, hundreds of tubs of blood work, dozens of x-rays, a handful of scopes, millions of tears, dozens of questions, and well over ten doctors, I finally received a complete diagnosis. I have seen my fair share of doctors who didn’t have a clue what they were doing.

The last few days before my lupus was diagnosed were the hardest days, all I could do was cry and wonder if I would ever receive my answers. I was so close yet so far away, I felt hopeless. I convinced myself that all my stress and emotions would go away as soon as the doctor diagnosed me, which was the opposite of how things played out. I had to learn to give myself time to cope with my illnesses. Up until that point very few things scared me with my health. I cut off my emotions about my health for the longest time, hiding everything the best I could. But suddenly questions, fears, tears, and being overwhelmed poured out of nowhere. I felt lost and unsure how to live a normal life. I joined a few online support groups and liked a few awesome lupus pages on Facebook. Honestly I am still coping, I only got diagnosed two months ago and I am impatiently awaiting my fifth surgery. It’s heartbreaking to have to say, “No I can’t do that today.” It’s a struggle to find the balance of pushing yourself to your full potential and allowing yourself to rest.
Support is key to fighting any chronic illness in my opinion. If you know someone fighting any chronic illness take time to listen to them, let them know you are there, encourage them, learn something about their illness, or just give them a simple hug. The little things make a huge difference. I am so blessed with an amazing support system. My mom supports, encourages, fights with me, doesn’t let me give up, and helps me every day. I also have a group of friends from the most amazing retreat in the world who support me though everything I go through and remind me that I am loved.

If you are anything like me you don’t always take advantage of your support system because you don’t want to be a burden or scare anyone. Most of my close friends don’t ever know what a bad day is like for me. Recently I have begun to reach out to people and let people in. Most people don’t talk about the terrible days with any chronic illness. Everyone has bad days. We deal with typical stuff like stress from school, heartbreaks, disagreements with friends, and all the average stuff. Our illness is just the icing on the cake. Those days that if someone touches you, you want to scream in pain, the days you have no energy at all, the days you can’t walk and need help doing every small task, the days you feel so overwhelmed that you just cry and cry because you have been fighting so long and you’re so tired. Most people outside my family don’t see my terrible days, I hibernate during them. Hoping they will take a break from bugging me soon. People know about half my struggle. No 19 year old wants to admit that some days they can’t walk or they can’t go out with friends, or be in the sun, or they are weaker than people think.

I have been trying to accept my illness and raise awareness. 75% of Americans don’t know what Lupus is yet it affects five million people, those are sad facts. Awareness matters. My illnesses are a part of who I am, however they do not define the girl I am. There is more to me than my illness. If you fight a chronic illness, keep fighting, don’t give up, reach out to people, you are not alone! I fight like a girl!

 

Victoria
Pennsylvania
Submitted 6-25-2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

4 comments

  1. Cecelia Aguirre

    Hello Victoria,

    I was reading your story and it reminded me alot of mine. I was about 19 when I was diagnosed with SLE. I am 37yrs old now and still have my ups and downs. I just wanted to tell you to keep fighting, keep reaching out and never give up, even when you feel thats all thats left. You sound like a very strong young lady and it sound like you have so much support already. I will keep you in my prayers as you fight day to day!

    God Bless you!
    Cecelia

  2. Thank you so much for the encouragement Cecelia!! It means alot!

  3. I understand what you feel and experience that every day of my life. I’m 36 and was diagnosed with SLE almost a year ago. I have a horrible doctor that has only given me lyrica which only has made me gain 40 lbs. I’m in more pain than a year ago and ALL my symptoms are worse. There are only 4 rhumy’s in my area and they are all in the same clinic and told me the same thing as my current dr. my illness has played a big part of my 2 year separation from my husband as well. I just want to sleep and eat without being nauseous and to stop hurting!! I have been on meds for add, anxiety, depression, and insomnia for several years now. They say its all related to my Lupus, however they’re all much worse now. I pray no one ever has to experience this.

  4. So well said for someone so young! I “feel” ya sweetheart! I have gone through a lot of what you have and been so frustrated and at the same time pissed off. Those who have never known the silent pains we go through, think its all in our head cause its so hard to diagnose or they don’t want to hear about it. I have had endometriosis to the point of a hysterectomy after my third child, a diseased gallbladder, hypothyroidism (w/cancerous nodules), diabetes, a fatty liver, lupus, and fibromyalgia. The Plaquenil has done wonders for me, though it doesn’t work for everyone. They also changed me to a morphine patch for pain yo give my liver a break from pain meds by mouth.

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