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Cecily’s Story (Lupus)

Cecily's Story LupusIf you told me I would be as sick as I am now, I would not believe you. Ever since childhood I would get random symptoms, like pleurisy, but I had no idea what it was. When I was 14, I developed type one diabetes, an autoimmune disease. I hoped that would be the end of my conditions, but little did I know more would start appearing as the years went on. When I was diagnosed I had joint pain and hair loss that was unexplained. Everyone just put this down to the effects of the diabetes. I even believed it and the symptoms completely went away for a number of years. My diabetes was easy to control as I had slow progression, so I still produced a lot of my own insulin. Things were going well until I was about 17. I had a great boyfriend, I loved my college, was doing well in my studies, and loved my friends. I loved cycling, getting out and about, smoking, drinking, and partying. Everything seemed just fine. My health worries seemed to be mainly a thing of the past.

I started noticing my hair was coming out more than usual when I was about 16. I just put it down to stress or hormones. Everything in my life was going well so I didn’t pay much attention to it. My hair was still very thick and I was a beauty addict. I loved my curvy figure and feeling like an attractive young lady. I loved the attention my boyfriend paid me and liked to turn heads. Fair to say I was confident in myself and who I was. I liked being the center of attention, and I looked forward to a bright future.

In November 2012, a terrible thing happened. My boyfriend and I had been together a year and I loved him a little more and more each day. I hoped nothing could break our happiness. That was before I found out I was pregnant. I was so scared. I couldn’t tolerate birth control pills so the other methods we used had failed. I couldn’t bring up a child and my family would be very upset and angry. We were deciding what to do, and I was six weeks along. We went to many doctors for advice. They wanted me to think about a termination. I wanted to think about it over Christmas, but miscarried a few days before Christmas day. I was terrified on my own with no one to tell. Little did I know that was only the beginning of my problems.

A day after I ran a fever and my hair began falling out like crazy. As if I didn’t already have enough to cry over! My body was in a terrible state, joint pains, constant nausea, vomiting, and sweating. I lost a ton of weight and my curvy figure disappeared. My hair was thin and constantly fell out. My whole body hurt and I was constantly running low grade fevers. I developed large dark circles under my eyes which would not budge no matter how much I slept. I went to doctors who would not listen. But I knew better. I knew about lupus and pushed to see a Rheumatologist. I never realized how much ignorance there is about autoimmune conditions. I saw a lovely lady who prescribed me Plaquenil, which got me back on my feet. My bloods were negative ANA but they turned positive, a very high titre of 1:1280 speckled pattern. Now after six months of feeling good, I feel terrible again. I have lost weight again and feel sick all the time. My Lupus seems harder to control than I thought. I have started steroids and will start immunosuppressants soon. My lupus was triggered by my pregnancy. I also still have diabetes, which is made worse by steroids. I am still with my boyfriend. Not a day goes by when I don’t miss the girl I was and the things I used to do. Now it is just a constant battle to get her back.

Cecily
England
Submitted 10/16/2013

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 story 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.

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3 comments

  1. Cecily,
    I was reading your story and it brought back so many memories of my own story. My story is posted on the Fight Like girl page also, under Cecelia Aguirre.

    I was diagnosed with Lupus when I was 18, but had so many joint pains before that.

    I definitely will keep you in my prayers, I know this disease is very hard to control and can cause so many different problems. I have kept my faith in God and just keep believing that I will be healed! Continuing to keep my focus on my family has helped me so much. Stay strong and keep fighting. There will be days that you feel like giving up, but keep fighting. I’m sure you have so many people who live and care about you. Accept the help when offered, you will need it and accept the fact that you aren’t Superwoman. God blessed you with family and friends for a reason!

    God Bless!

  2. Keep positive! I have had Lupus since I was 18 years old. I was losing my hair and was tired all of the time. I was diagnosed by a Dermatologist and Rheumatolgist. They prescribed my plaquenil and I receive steroid injections On my scalp. I had my first child at the age of 23. Due to my water retention, I gained 80 pounds. I ended up having a c-section and welcomed a healthy baby boy.

    When I was 33 years old I felt a lump on my breast. I went to the doctor and was told that I had breast cancer! How in the world did I get lupus and cancer?? I fought for my life and have been cancer free for 6 years. A month after I celebrated my 5 year Cancer free birthday and my 39th birthday, I found out I was pregnant with my second child, I was scared and very frightened because of my health history,

    The doctor had me stop taking plaque nil and told be to be positive, I was healthy and reached my 5 year birthday. I gave birth to a very healthy baby girl. This pregnancy was a lot easier. I started to lose a little bit more of hair since I gave birth. I continue to take the prenatal vitamins an plaquenil. I also exercise and eat healthy,

    Fight Like a Girl! I did and I appreciate life each and every day!

    • Thank you Teresa for the positive stories you have shared. Continue to spread light even if it’s the only light in the room. God bless. Tina Bing

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