Spoonie Stories: Katia Yago
I'm Katia Yago from Barcelona, Spain. I'm 43 years old, and my medical journey started when I was a kid.
I spent the first year of my life at a hospital and was sick most of the time as a child. I more or less made it until I turned 34, but at that age, my body couldn't go any further.
It’s taken me a lifetime to understand what was going on in my body and finally, nowadays I’ve started to find answers.
I suffer from 7 vascular compression syndromes, have hypermobile Ehlers-Danlos syndrome as well as comorbidities such as visceroptosis, gastroptosis, nephroptosis, gastroparesis, mast cell activation syndrome, central sensitization syndrome, postural orthostatic tachycardia, dysautonomia, a bilateral luxation of the temporomandibular joint, frequent hip, elbow, knee, and finger subluxations, craniocervical instability, atlantoaxial instability, superior odontoid migration, occult tethered cord syndrome, abdominal and inguinal hernias, pelvic prolapses, diastasis recti and an abdominal eventration, recurrent SIBO, collagenous colitis, scoliosis, hyperkyphosis, hyperlordosis, digestive disorders, an intestinal sub occlusion, intestinal hyperperfusion, abdominal adhesions, pelvic and bladder dysfunction, anxiety disorders, pudendal neuralgia, systemic lupus erythematosus, among others.
From my experience, there is no better mindset than self-acceptance. You may wonder why I make this statement, and the answer is simple: I keep adding diagnoses, and my body is falling apart.
I’m receiving palliative care, but still can’t manage to control my pain. I have already lost count of all the surgeries that have been recently proposed to me. The fingers of both hands are not enough to count them. However, after 11 interventions, 23 coils, glubran, foam, 3 bypasses, a stent, a nephropexy, the release of the celiac trunk, a severe chylous ascites with pulmonary atelectasis, a drainage of 15 liters of chyle, having lost 20kg in the past 8 months and not being able to eat solid food, my body is exhausted, and my head keeps repeating: "To what extent are you going to continue trying to gain quality of life and at what price?"
At this point, self-acceptance is the key, because now that I have admitted that my body is a real challenge, and I'm certain that I have tried all options at my disposal, I live at peace with myself, even knowing that I am in pain 24 hours a day, every single day of the year.
What I know for sure is that I am immensely grateful for the constant help and support of all my doctors, but my body refuses to cooperate.
As long as my body allows me to do so, I will continue to advocate for the visibility of Vascular Compression Syndromes so that other patients do not have to go through a journey like mine. This is why I'm a member of the Executive Board of the Spanish Association of Vascular Compression Syndromes AESCOV, to make our voices heard and spread awareness worldwide.
Katia’s social handle: @nutcrackersyndromefighter
Website: http://www.aescov.es
Disclaimer: This is simply the story of Katia’s personal experiences with chronic illnesses. This blog is not to be taken as medical advice. If you have any medical concerns, always seek the help of a doctor or licensed medical professional.
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