My journey – Walk with Me

“Where can I get support and understanding about my disease, symptoms and life?”
This is the question that I and many of you have asked. We try to find kinship with others who walk this path we were given, so we don’t feel lost and alone. My search brought me to many paths. Different sites offered different ways to support their members. I joined a group, in the beginning of this journey, and became very involved. I had ideas and words to share. I learned from what others had to say as well. I had connected with so many people who had made this disease easier to deal with. I also crossed paths with those who made it more difficult.
The journey of finding like minded individuals has twists and turns. It’s like we were all given this heavy burden and should be holding it up together, instead of trying to carry this burden alone. Meniere’s Without Borders (Administrator-Private Facebook Group) was then “developed”. It was almost immediately that I realized my goals lined up exactly with another MD warrior, Dave Giugno. We together quickly realized that our intentions and motives didn’t line up with everyone. The more we tried to branch out  with good intentions to help as many as possible, we soon realized that we couldn’t make everyone understand our goals. Instead of trying to convince or justify our vision for helping others, we focused on how we can make our world of Meniere’s better. It is about advice, understanding, support, laughter and now I get to offer my site here in addition. This is where I can write my inspiration and publish articles of all my research for awareness and answers.

* I have been battling Meniere’s Disease (Bilateral) for 17 years. Here is a quick view of my journey: I was diagnosed in 2001. I am now 41 with 2 beautiful children. MD broke me physically and mentally for 3 years. I finally found a great doctor after seeing many specialist and he had me managing my life well again, even with symptoms here and there. My career as a Paralegal was booming and I had many more good days than bad. In 2005, MD started again full force with other medical issues as well. Within the next few years, I was diagnosed with a 6mm lipoma (center of brain), Fibromyalgia, Crohn’s Disease, Sacroiliitis, Melanoma skin cancer (3 times) and most recently, Iritis. I had very little support, not enough answers and there was no social media for me to locate any real advice. At times I was bedridden and felt worthless. There were many nights that I just wished it was over. I eventually had to give up a wonderful career in law and found myself in a bad place being told by the person in my daily life that I was a faker, lazy, and down right pathetic. However, I still managed to push through every day broken. I just kept faking being well instead of sick, like most warriors say. In 2011, I lost my brother-in-law and my father within 19 days of each other. I stayed positive and focused. I was damned if my own body was going to take the fight out of me. At this point in my life, I had suffered so many losses personally and medically, that my strength was finally crawling out of the darkness. Mind you, all these years are a roller coaster of good and horrible health, doctor appointments all the time and trial and error with medications. Eventually my long distance driving became an issue, I had to give up my career in law and go on disability. But, I kept on fighting every day all while being judged.  My world was spinning and so was my life. I would go into small remission periods only to get hit again with a flare. I was a prisoner in my own body and nobody could hear me screaming inside for help. My emotions were up and down and I felt completely alone in a crowded room. I always stayed strong though. I stayed focus on being the best mother I could as that is one thing I will never allow MD to take from me. It could knock me down but it wasn’t going to knock me out! In 2014, I find myself a single mother of 2 kids as I’m struggling with the loss of so much. I had a drop attack that literally took my hearing completely from my left ear. I was only 30% hearing in right ear with an aid at that time! I recovered rather quickly and then my body had to chose between fight or flight. To my advantage, it chose fight. I never mourned anything! I just kept going.  I had learned to protect myself by living my entire life that way. Everything seemed to be going wrong but, I was fighting! Even though I was heart broken and scared, at least this damn disease was on board! I took time for me and my children. I finally felt like myself again. I had all the ‘normal symptoms’ but life was good. In Nov of 2014, I met the most amazing, compassionate and understanding man ever. The more I had support of my partner, the more confidence I built back within myself. However, I forgot how this monster called Meniere’s Disease works. On June 8th 2017, my heath took a drastic turn for the worse within minutes. The entire summer was more specialist, more trying of new meds not working, doctors throwing their hands up, lost so called friends and stopped believing in myself. I started experiencing anxiety and was losing who I was. Then, one day that Fall, I just started searching groups so I could vent to someone who understood. I had no idea that by the middle of my post, these words would come out of me, “I’m going to wipe my tears. I’m going to change my thinking today! And so can all of you! We are fighters!! That’s what we do! Our goal is when our feet hit the ground, our MD says ‘oh no, she’s up!’. Yes, it’s a roller coaster and it sucks! But we are going to be okay; just not today. But we will push as hard as we can. We will get hit! Hard! But it’s not about how many hits we take! It’s about how many we take and keep moving forward! As Rocky said ‘that’s how winning is done!’. Accept that MD sucks and accept that it will be up and down. But do not accept defeat! Damn right it is hard! What’s harder is giving up not knowing if remission was just a day away! So right now I vow to fix my crown, which is crooked from vertigo. With that, I hope my book here helped someone. If I helped at least one person, then I made a difference. Hugs to all!” It was from that moment forward that I became known as “Inspirational Gina”. I had no idea that my words would change so many lives. I always had a gift for creative writing. I was published for my poetry twice and won several Editor Choice Awards. But this, this right here…..this is my dream. I’m finally using my gift to help others, just as my mother who passed away in 2015 believed I would. If you haven’t helped at least one person in your life, then you have wasted your time here.

Life never came with guarantees. Life promised you nothing! The only thing you’re entitled to is your own happiness. So take my hand and walk with me. Let me show you the way. Take this journey of Life and Menieres with me, Gina Marie.