Feature image from MISSPLAQUETAS
Laura Cisneros is an ITP patient living with Fybromyalgia and Chronic Fatigue Syndrome in Mexico City. Online she blogs as Miss Plaquetas, writing a bilingual blog about chronic illness and cooking delicious food. I first saw Miss Plaquetas on Instagram when she was sharing images of bruises under the hashtag #platelets. Lately we have been chatting.
I’ve lived with ITP for the past three years now. March the 1st of 2012 I had a fall that wasn’t even tough, but that caused a huge black bruise on my leg.
It was her friends, family and bosses at work that noticed Laura’s symptoms. Her family were concerned; especially as she looked very worn and felt she was under a lot of stress.
By then I already had symptoms of the disease, although I didn’t know it was ITP. I ignored these signals which I believed were caused by the stress to which I was subjected. I traveled a lot for my job and was addicted to my work.
At the time Laura was working in Industrial Engineering specialising in Hygiene and Industrial Safety which saw her constantly traveling.
I always put my job as my priority and on weekends I was partying a lot, so it was natural for me to assume that my body was already getting tired. Sometimes I would get a message the night before that I had to go on a trip,and I should be ready for at least, fifteen days of absence. I never thought it was something else.
Laura was eventually sent to the ER with a count of 12, not understanding what was happening and not sure how to explain anything to her parents.
Three years may not sound very long, but I’ve been subjected to a myriad of treatment with immunosuppressants, steroids, alkali, intravenous, oral, mixtures…Two splenectomies, one of the spleen and one in accessory spleen and tumours.
Laura’s longest stay in hospital so far has been two months. Her doctors have tried all possible treatments and none have worked successfully. The journey has taking quite a toll; mentally, personally and spiritually. There have been exhausting times when Laura even considered simply giving up.
Due to constant fatigue, eventually I got more diagnosis of fibromyalgia and CFS, which coincided with my chronic ITP diagnosis in November 2014. It took two years that a rheumatologist diagnosed me with fibromyalgia and CFS.
Her blog was originally a personal diary. Set to private for a long time, Laura wrote about her life before deciding to quit. It is only recently that she has returned to writing and has changed the setting of her blog to Public.
What really inspired me was finding several other blogs by people with different chronic diseases but similar feelings and experiences. I wanted to get more involved in telling my story to help others with chronic and invisible illness. I didn’t have anyone to advise me when I started and it was doubly difficult.
When I ask Laura is she has come to accept living with a chronic illness she answers, ‘Yes. But it’s still difficult.’ She says that the hardest part has been accepting all the ‘No’s’ that are now in her life. Simple things like walking in the park by herself have become a struggle.
My body doesn’t allow me such efforts, and it’s very frustrating. This lack of freedom in the decisions of everyday life is an emotional battle. There are times in which I no longer felt part of the people. Many people think that because the experiences I already lived and pass, I’m a strong and in control in terms of my emotions; that situations like break up with my partner shouldn’t affect me because I’m a survivor. That’s ridiculous.
Laura seems to accept that feelings of frustration are inevitable and is no longer consumed by these feelings. She is careful to plan activities and rest between. She credits the healthiest thing she has done for her mind and body is to accept that illness is in her life but does not control her life.
It took me a long time to learn to coexist in a harmonious way with my body and mind, but it was worth it. It may sounds like a cliché, but the fact that I’m still here, have air in my lungs and am capable to tell my story is a gift itself. I’m sorry I had to get sick and go through what I went through, but I wouldn’t edit any day from then until now, because thanks to that, I’ve had very positive changes that have made me who I am now.
For a long time Laura didn’t know if she was going to heal or if she would die looking for a solution. When I brought up the topic of a cure for ITP, she mentions something that I have battled with as well, the notion of people wishing you ‘Get Well Soon.’
I think the most painful thing that people still tell me is “I hope you recover soon”, when they obviously know I have chronic diseases.
When my haematologist finally told me that this will be chronic, contrary to what anyone might think, it was the most liberating thing. It meant I shouldn’t continue torturing myself with thoughts that perhaps the next treatment would cure me; or my platelets will return to normal. I stopped looking for a miracle, I found peace and began to live. I no longer think about a cure.
Laura’s current job is to be a spokesman, spread the word about what this disease is, and fight for further research into hers and other blood disorders. Laura is aiming to find an optimal treatment and a reasonable quality of life, for herself and others suffering from chronic illness.
It’s my only goal now and die trying all those things is my way of honouring what I’m living.
Laura is on Instagram as INSTAGRAM.COM/MISSPLAQUETAS
Laura Blogs at MISS PLAQUETAS