By Luana Najjar
My name is Luana, I have been a carrier of UCE for almost 5 years and a carrier of Human Immunodeficiency for 8 years. In short, I produce excess IGE, triggering the first crisis after a huge stress spike, and I do not produce IGG, IGA and IGM, triggered after H1N1 in May 2012.
I currently use human immunoglobulin and Omalizumab monthly.
My hives started on a Saturday in 2014, I woke up already blistered, swearing I was allergic to the antibiotic I was using at the time. After 2 intense months, the diagnosis of Chronic Spontaneous Urticaria was made.
Doses and more doses of corticosteroids, antiallergics, teas, diets and everything else that every patient tries. When the crisis comes, nothing holds back nor can it be reversed quickly. Several trips to the emergency room in the early hours of the morning and lots of adrenaline for angioedema.
A little over 2 years ago I got Xolair and the much-feared thing calmed down. From time to time he threatened to return but little by little he calmed down.
Having hives means learning to live with Today! You never know what you'll be like in 4 hours, for example.
My last crisis began in August 2018 after a very loved one became ill. Nothing stopped the crisis. It lasted exactly 8 months. It's been exactly 2 weeks since they called a truce. I ended up taking 3 adrenaline a day. I had 1 day off and 6 in total crisis. And I thought daily, it will pass, have faith, I breathed and continued standing.
In those years I lost count of the pounds gained and lost, of hair loss, swelling, crying and despair. And there comes a moment when I stop, look at my daughter and think, she needs me and I need to fight for myself.
I learn, with each crisis, to control my psychology and not stop in time. Is there any point in lying at home or crying? No! It's going to get worse!
I learned not to care about people's looks of pity or fear of 'getting it'.
I work with people, I'm a nurse, and unless I'm short of breath, I don't stop going. It's the best medicine.
Keep your mind busy so you can learn self-control.
Every day I wake up in fear, I don't deny it, but I continue fighting so that the disease doesn't defeat me.
Was it the last crisis? Certainly not! I feel it latent in me! But she won't beat me.
Living is a gift and learning to live with UCE is a daily miracle.
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