Irrelevant, insignificant, ignored, un-empowered, but worst of all INVISIBLE. Let me let you in on a big secret.
Those of us who are fighting everyday with the simplest of tasks, we’re actually lying and faking.
We’re lying about feeling “better/well” we’re being “fake”. We’re actually faking being well, and so many of us have become so good at it that society looks at us as unproductive citizens. On the contrary, if, I had my way I’d be working and helping my husband provide for our family. We are not Invisible in the least bit. Society just ignores the elephant in the room. No one wants to talk about reality, the sad and unfortunate things that people with chronic illness suffer from.
I have 16 confirmed diagnoses, YES COUNT THEM 16! Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Fibromyalgia, Raynaud’s Phenomenon, non epileptic seizures, PTSD, inappropriate sinus tachycardia, chronic fatigue syndrome, interstitial cystitis, neuropathy, irritable bowel syndrome, rapid gastric emptying syndrome, asthma, Anxiety, depression, and chronic pain. My team of doctors in San Antonio suspect there is much more underneath the surface. I have multiple testing and procedures coming up. These include a stress test, echocardiogram, and holter monitor. That’s only from my cardiologist.
I also have an esophageal motility test coming up. I have an awesome team of doctors out of UT Medicine in San Antonio Texas that are trying to repair, address, and fix all the issues that have been over looked for so many years by my local doctors who kept telling me it was all in my head. I was persistent and my voice was finally heard. I will be having an endoscopy, biopsy / exploratory procedure coming up.
This is where we start to get to the bottom of things.
I know many of you may be asking why did it take so long to get proper treatment. The fact is that I fell through the faulty cracks of a very broken medical system. This should have never happened. I turned 39 last November and I promised myself I was going to make healthier changes in my life. I began to use my stationery bike. I went through two “tours” of a thousand miles. Hard to believe right? But I did it. I started slowly about five miles a day then kept working up until I hit 40 miles a day. Sure, I felt like I was going to die, my vitals would go crazy, and I would have “grey outs”, those “Oh Crap” moments where you feel like you’re going to pass out but you don’t. The best way for me to describe it is like you’re drowning outside of water.
My hearing almost completely goes away and my vision is limited to a small spectrum of what I can actually see. Yes, it’s terrifying… but I push through it. I’ve become way more active doing light weights, abdominal work, walking and yes even running. I’ve become involved in my youngest daughter’s running club and I run two miles every Wednesday and walk about a half a mile a day.
I had a gastric emptying test done in December. I found out I have Rapid Gastric Emptying Syndrome. Basically my stomach empties within the first five to 15 minutes of eating. I have a hyper stomach with a hypo small intestine and colon. Which makes my body try to over compensate for my gastric issues. It’s painful and more than anything, annoying. I have to watch everything I eat now. I’ve cut out red meat, sugars, sodas, Gatorade, no tea, and no snacks like chips or candy. It’s hard but I’m trying. I’ve lost some weight, which was my goal.
I have come to a point in my life where I will not let my chronic illnesses define me, and bind me back into a bed /couch not being able to even leave my own house. My autonomic neurologist increased my IV home infusions from once a week to twice a week. She’s also upped my medication Corlanor to twice a day. One in the morning and one at bedtime. It seems to be keeping my pulse under control for the most part. But with inappropriate sinus tachycardia, it is hard to control.
This July 6th will be six whole years that I’ve been chronically ill.
I remember that July 4th of 2011. I spent the most wonderful day of my life with my husband and daughters at the beach. I sat there listening to the sound of the wind and the waves just soaking it all in. It was like I knew something was going to run my track off the rails. I’ve become a prisoner in my own body (so to speak). July 4th of 2011 is when I got stung by a jellyfish, and my life forever changed. I would never change becoming chronically ill. It has shaped me into the powerful woman I am today. I have learned so much and have become an advocate for not just myself but people just like me.
I made our local news station in 2016 shedding light on Dysautonomia. It was a proud moment. I’m actually the only person in my city raising awareness for POTS/dysautonomia. Click here to watch an interview done by KRIS NEWS, our local news station andan affiliate station to NBC.
My interview was shared multiple times. This made me feel accomplished, like I made an impact on other’s lives. My life has seemed to be taken over by this jellyfish sting. My life forever changed after that sting. It was a snowball effect. It’s like this jellyfish sting is a succubus who has decided to make my body it’s host trying to suck the life out of me. I feel like I was sinking into an abyss, a deep dark tunnel with no light at the end. Yes, I have the support of my family. My husband, our two daughters, and my father and mother… and for that I am forever grateful. But, on the other spectrum I feel so alone and scared. Why you ask? It’s because I’m the only one going through the physical aspect of all my chronic illnesses.
These illnesses have become like a horrible tenant that refuses to leave, not matter how many times you’ve tried to evict them.
I’ve been wanting to tell my story my way for years, but I couldn’t find a photographer interested enough to take me on as a project until just recently. Mr. Philip J. Perez took it upon himself once I spoke to him how important getting photos/art taken to get my story. There is a powerful message with each shot taken.
Check out Philip’s photos here!
At first I was extremely nervous and uncomfortable at the beginning, but Philp’s level of professionalism is very respectable. I also had the opportunity to get Aundrea Victoria Salinas an amazingly talented make-up artist who does body paint as well. Together with the collaboration between the three of us I feel we captured some breath taking, emotional, story telling shots.
These two wonderful souls did this strictly out of the kindness of their hearts. This whole project was free of cost to me. They told me they like to help out the community as much as they can. Aundrea Victoria Salinas has had the opportunity to have her work featured in different magazines. Philip J. Salinas has shot so many models, brides, events etc etc. I strongly believe that there was a bigger force that brought us together. These images are bold, powerful, melancholy, they tell a story… my story! Even as vulnerable as I was / am, I felt extremely empowered after the photo shoot.
This was my first time “modeling ” I’m actually thinking of possibly making a go at modeling. I want to break the stereotypes of what “models” should look like. Don’t stuff us in a box and tell us what we can and can’t do. I had not seen the finished pictures until March 1st 2017, it was with those pictures that I realized…. I’m beautifully broken! I’ve come to accept that with peace in my heart.
I’ve come to the point where I’m living, not just existing! I do not want to have any regrets. So, whatever opportunity comes my way I will take it, as long as it’s to educate and advocate, or things that I want to do before I turn 40 this November! #TellYourStory! Don’t be afraid or ashamed. I live my life like an open book. I welcome any and all questions. I would rather people ask me about my health than make assumptions. I hope to inspire a MOVEMENT SO BIG THAT #TellYourStory will take off like wild fire!!!
I hope these images make the “Invisible ” very “Visible”
About the Author: Mari is a mom living with multiple chronic illness, including POTS and Fibromyalgia. She’s passionate about spreading awareness of Dysautonomia and encouraging other patients in their journeys. Check out and like her Facebook page Chronically Fallrisk and keep an eye out for her articles here on Patient Worthy!
