WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

My senior project PLEASE CONTRIBUTE

Dear We Are Lupus user,

Hi my name is Nicia Ramos I am 18 years old and a senior at Blackstone Academy in Pawtucket, R.I.  I am doing my senior project, on the perspective of the patient and the loved ones of patients with lupus.  If you decide you would like to contribute to my book you can write a story, poem, or even a short paragraph about your experience.  The message I want to send out to people after they read my book is that you are not alone and there are many people who have the same feelings as you.

If you’re interested these are the following things you must include at the top of the story:

• Name – if you wish to be anonyms write anonymous
• Patient or loved one
• Date diagnosed
• How long its been since diagnosed
• specify when the story is from – good or bad day/When the time was

 Example: Bad day/When I first got diagnosed

Take pleasure while you are writing because if you enjoy it others will too.  Put your heart into it and let your feelings out.  Remember you are not alone.

If you have writers block remember to look back at this to know how my book is being split up: 

Patients – 1^st finding out, learning about it, knowing about it

Family - 1^st finding out, learning about it, knowing about it

Friends and Lovers - 1^st finding out, learning about it, knowing about it

Just remember it doesn’t matter what stage you are at we all go through different stages and we all have to do each stage one step at a time.

My book is going to talk about everything we go through from the good days, to bad days, from the struggles, to the easy things, from the things we took advantage of before we got sick, to the things we can no longer do or struggle to do.  I want to let people know how this one illness opens the door to other illnesses and with your help I know my book will be successful.

I am going to try and publish this book and when people buy them 25% will go to my school Blackstone Academy, 25% will go to me and my college needs, and 50% will go to a foundation for lupus patients.  I am still trying to find one so if you know any foundations that are trying to help us then please let me know.

Thank you very much for your time and efforts,

Nicia Julia Ramos

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mystory

I was always the kid who took care of herself very well. I ate my veggies, bundled up in the cold, didnt walk outside with my hair wet, and I always took my medicine when I needed to take it. It was the day of thanks giving day and I had been out of school for a few days with what I thought was a sinus allergie cold.  I was in my pjs all day sniffling, coughing, and when it came to swallowing my ears and throught would kill.  Thanks giving dinner smelled so good turkey and potatoes and everything else cooked too perfect to be true as everyone ate and filled there bellys I was without.  I couldnt eat. Not even potatoes.  I was pail and felt horrible but I was dealing with the pain.  My mother told me as soon as I can I will bring you to the doctors.  Finnally she says lets go its been too many days you have been sick.  So we go to a walk in cinic and they send me home with some cough sirype and called it a day.  A week later im still sick so my mother brings me to childrens hasburo hospitel and they ran a whole bunch of tests took so much blood i felt light headded asfterwards.  The day I was going to leave they let me know I had drug induced lupusthe first question I asked was can I die of this? second was can I have kids?  The doctor explained that i can live a full life and have kids but i have to bemonatored.  I had a hard time beleiving that I had it and that things had to change.  Im dealing with it better now but things are still hard.  I take it one step at a time and all I can do is take care of myself and hope for the best.

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Starting off

When I first got diagnosed I was scared I thought I was going to die but as I learn more about this I know you can live and I want to be in the group of lupus survivors.  I need a new doctor I would prefer a female in the area becasue I feel my doctor just isn't good for me.  Im in pain physically and emotionally.  I see my family and friends look at me and they worry for me and sometimes it stresses me out because I dont like to have people worry about me Im usually the one to worry about everyone else.  To people who have lived and learned about how to deal with this how do you do it?

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