There’s a smile on my face, because I am not alone, nor will I ever be alone.
My name is Tatiana. I am a girl in her twenties who lives in Pensacola, Florida. I stumbled upon this project and website a few weeks ago and spent a whole night reading and learning; And crying finally feeling not alone in this world. I was an enlightening experience.
I love to exercise and I love to travel. I love to take my dog and go for a run and I am big into the CrossFit community. I love to run half marathon and I love to push my body to the limits and crush a good lifting session. I love to travel and experience new foods and cultures. I love eating gyros in Greece and playing soccer with the children in the Dominican Republic. I have a travel bug and am always itching to go on my next adventure. I’m a fan girl at heart who loves all things DC Comics and/or Marvel related. I love living.
I am not really sure where to begin, nor am I exactly where my story starts.
I was born in the fall on a Wednesday in North Jersey. My dad was finishing med school and joined the Navy. That’s how I grew up— the life of a military brat. I have lived in a total of 8 states and went to 4 different high schools. I have grown up all over the place.
It all started in the fall of 2006. I was in a soccer tournament, had a fall, and hurt my knee. I had slight damage to some tendons and ligaments. That was repaired and fixed. For the next three years my knee would swell (360 degrees around the knee) and it would bruise. When I say bruise I mean- looks like someone took a bat to me and beat me, bruise. I would go back to the orthopedist because it was a sports related injury that we thought started it all; but after multiple MRIs and X-Rays they told me that my knee was healed from the fall and that it was structurally sound, that there was nothing else going on, and nothing else they could do. They needed to refer me to other specialists. Thus began my years of doctors appointments.
The bruising flare ups occur on its own accord. The flare ups can happen once every three weeks to once every three months. Or I can go six months with no flare up. There is no rhyme or reason and it was frustrating.
Along the route to trying to get to the bottom of what was going on with the bruising, other odd ball issues I had endured my whole life came to fruition as well. For starters, my nauseous stomach that would cause me to throw up for three days after I ate with no fever and no there symptoms (and caused me to miss a whole lot of school) sent me to the GI doctor. There the doctors ran tests and I was diagnosed with Celiac Disease. Cue eating gluten free for the rest of my life. I also was not having regular menstrual cycles, so they sent me to an OBGYN. After a few appointments and scans I was diagnosed with PCOS (poly cystic ovarian syndrome.) During all those appointments I was also battling chronic tonsillitis and having tonsil stones every couple weeks. That led me to getting my tonsils out in March 2013. Flash forward to 2014 still no diagnosis on the bruising disorder and it had started to manifest from just around the knee to just under my bust and down my whole right leg.
It is funny for me to look back because as a little girl I was always slightly ‘sickly’ and always complained of joint pain. Both of which are common among autoimmune disorders. Now it all kind of clicked together and made sense— except for the bruising.
I was regimented on my gluten free diet and I was on the correct medicine for PCOS. Some doctors thought the bruising was a side effect of eating gluten and that my proper diet would change that. They were wrong. The bruising started becoming more frequent, more painful, and it even started to spread further over my body.
This is what it it looks like. Sadly, this is a good and slightly contained flare up for me.
My joints swell, fill with fluid, turn red hot, and then over a period of 4-6 turn in to these deep bruises. It forms right under my bust line all the way down to my ankle. Some of the bruises have these deep nodules that are even more painful. It’s hard to walk, hard to sleep, hard to function. It makes daily tasks really hard.
I am sick frequently; I run a low grade fever, and I run borderline exhausted sometimes. My flare ups are uncomfortable and inhibit me from all I love to do.
I’ve seen specialist after specialist, had scan after scan, biopsy after biopsy. It’s been nearly ten years (and counting) and I still don’t even have a name to label my condition. It’s that rate, it’s that uncommon. It is definitely a rheumatological disorder and I have a wonderful team of doctors who are genuinely invested in my care and well-being.
The past year has been really tough on me. I have been having major bruising flare ups almost every three weeks and it was accompanied with some sinus issues as well. After seeing an ENT and having him consult with my Rheumatologist, it’s not uncommon for autoimmune disorders to have chronic sinus problems with their illnesses. Mine happened to be in my ears and sinuses, and I’ve actually lost some hearing in my right ear because of it.
We have switched my treatment plan and ultimately just have to pray it works and hope for the best. I’m a medical conundrum at best.
Despite all of this and years of seeking answers, I’m still living. I still run half marathons and I still love to CrossFit. I took a new job that is going to allow me to further my love of travel. The hardest part in all of this has been figuring out what my ‘normal’ is and how I can still enjoy all things my life has to offer.
I have good days and I have bad days. Some days are worse than others and I walk around like a 98-year-old woman because my joints hurt, but some days I can go for a 4 mile run and feel like I’m in the body of a girl in her twenties.
My body is constant fight or flight mode and I never really let it show. I’m pretty quiet about my illness and keep it under wraps. Me sharing my story is a huge step outside my comfort zone. I just know that the ‘invisible’ illnesses are not understood by the general population ‘because you look fine.’ If you ask most of my friends or coworkers, I tend to always have a smile on my face. That’s true; I love life and am a happy person most of the time, even despite my illnesses. It’s been an emotionally taxing year- both mentally and psychically. I’ve been in a rough place trying to make sense of it all but I’m finally starting to accept that this is my reality and this is the life that I live. And that although I have these illnesses, they do not define me and I am so much more than my illnesses.
I’m not sure where I’ll be in a year, or five, and this treatment plan I am on now may not work as well as I am hoping. I’m okay with that. I’m starting to learn that my illnesses aren’t a weakness, they are a strength. They have helped me become the person that I am, and I am proud of the woman that I have become. Don’t get me wrong, I still have a lot of growing up to do and will have more trials to face but because of all that I have overcome in my past, I know I will be able to survive whatever comes my way in the future.
So as I type this, I’m sick with a fever and major congestion. I’m exhausted and tired but I’m oddly happy. I have some trips lined up for this year and can’t wait to start my big girl job. I’ll learn to live a life that fits my illnesses because I’m not going to stop living. That’s been the biggest lesson I have had to learn- to not stop living, to not stop enjoying the things I love to do.
And as I finish this, there’s a smile on my face, because I am not alone, nor will I ever be alone. Here’s to a new year full of adventures— both the good and the bad.