Part one…Year 1 to year 3
April 15th, 2018
How it all began.
I always refer to the past five years of my life as the craziest roller coaster ride I ever been on that seems never ending.
This may come as a surprise to many of my family and friends who may think that I’ve been struggling with my health for only two and half years, when all the skin issues started but that’s not the case.
It’s so complicated that I truly don’t even know where to begin. I look at pictures from my journey and it seems so surreal to me. When I look at these images that I have documented from the first day that my health issues started, I actually don’t recognize myself, even the pictures from my most recent flare just weeks ago. I guess it’s probably one of the reasons why I’m okay with posting these pictures publicly because in my mind it’s not me, but clearly it is me.
As I started to see specialist after specialist, many of them would tell me “it was all in my head”, so I decided to take pictures of everything that was happening so I could have proof that I wasn’t all in my head.
I mean I can’t make this crazy SH*T up even if tried to and why would I want to??? Do you think it’s fun being in pain and not knowing what you have and having your entire life just crumbling right in front of you??? JUST SAYING!!
I’m not going to lie, writing this post has been very difficult. I’ve been procrastinating like crazy. Rehashing the past few years reminds me of all the painful moments I’ve experienced, that my brain has simply chosen to block it out.
I will do my very best to share as much as I feel comfortable sharing in hopes of helping others and encouraging them to be their own health advocate. However, I have also chosen to keep some of the dark painful moments and certain medical findings private.
So here it goes…
November 2012. I woke up to excruciating back pain, to the point I could not get in and out of bed, let alone bend to pick something up. This lasted for 2 to 3 months.
At first doctors told me that this was muscle pain, but I clearly knew it wasn’t, as it just didn’t feel the same. After several blood tests, results indicated my inflammation levels were high which meant, I could have rheumatoid arthritis or lupus or some type of autoimmune disease. Eventually the back pain issues disappeared but have reappeared on and off in the last five years.
April 2013. I started to develop food allergies first starting with avocado, lobster then tomato, dairy and various fish to the point that now I can only eat 12 to 15 foods. My mouth and tongue would burn. I would get internal bumps inside my cheeks, you couldn’t see them but I could feel the bumps (now they are fully visible). I lost my taste buds. I also developed a geographic tongue, meaning my tongue had cuts on it, it still remains this way.
My lips would swell up as if I had gotten Botox. I would get random sores with mucus forming on my lips. This issue lasted for 3 years straight with a one year break once my skin issues started, but then the swelling and cuts reappeared again this year…I have yet to figure out what the trigger is!
So, basically, everything went down hill after April 2013. From 2012 to 2015, I had almost everything and anything happen to me.
I developed enlarged lyphm-nodes the size of mini golf balls on my neck (still have them today). Had 3 biopsies, including a tonsillectomy to rule out lymphoma and any other possibilities.
I had 3 CT scans & an MRI in a year and a half, several x-rays and countless blood tests.
I visited over 45 physicians in North America and Europe that included various specialists, conventional & functional (Western & Eastern doctors). I tried many different alternative medicine treatments you couldn’t even imagine.
Everyday for nearly two and half years I had phlegm about 10 to 15 times a day or more. I had a sore throat daily, dry cough and hoarse voice (friends would make fun of my voice or think I was sick with a cold…oh fun times)!
Tests also indicated that I had severe metal toxicity in my body. My mercury and lead results were off the charts for someone my age. In order to remove some of the metal toxicity, I had my 7 amalgams (silver filings) removed in 3 weeks not knowing that that alone is way too toxic. Some holistic dentists advise to have only 1 amalgam removed per month…wish I had known that at the time. After removing my amalgams I had 2 emergency root canals done in 2 days and two weeks later had a 3rd root canal done in Greece (much more economical).
The end of 2014, I was hospitalized for 6 days with a lung infection, possible pneumonia and inflammation and fluid near my heart and in my lungs. I was put in a lovely (sarcasm) isolation room as the ER doctor thought I had TB which I did NOT have…the good thing was I didn’t have to share a room with anyone!
The beginning of 2015, it was confirmed that I had esophagus and digestive issues such as, Small Intestinal Overgrowth Bacterial (SIBO), candida, leaky gut, parasites, co-infections & some other fun internal health issues that I’m still dealing with. I never had any health issues prior to 2012. I’m a clean freak and germaphobe, so where did all this come from? parasites? bacteria? None of this made sense to me.
I had several emergency visits, which I felt were a waste of my time as doctors would spent 10 minutes reviewing my case and then dismiss most, if not all of my concerns. I would go home with no answers but a prescription with some kind of medication that could “maybe help” my unknown health issue. Why would I take antibiotics for an illness I didn’t actually have? So, I refused random medication without a diagnosis. However, I did notice that whenever I would take an antibiotic a fews day or a week after taking it, I would get a skin/body rash. I told some of my doctors that I think I may be allergic to certain antibiotics but once again I was told “that’s not possible, it’s all in your head”.
While all this health craziness was going on I worked three jobs…running my full time business, working part time as Child Life Specialist at a hospital and once a week worked at a non-profit organization with teenagers. I was exhausted, drained, confused and felt hopeless living with the unknown, as I did not have a diagnosis (still don’t), besides labeling me with having a “Connective Tissue Disease”…which really means in a kind way we have no idea what you have!
I can’t even begin to explain how stressful all this was, not only for myself but for my parents as well. So, just when I thought I had been through it all and there was no way it could get any worse…oh boy was I wrong!
Little did I know that I was about to embark on the craziest longest roller coaster ride of my life in the summer of 2015. It was bad. So bad…Crying on my knees for God to help me. I could have never imagined what happened next to EVER happen in my life!
Part 2…to be continued…
