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Denial is a step in the mourning process. It’s absolutely normal to experience this emotion however, you can’t stay there in that train of thought. It is what it is. You have Meniere’s Disease (or vertigo related). Your goal is to get through the process and reach acceptance. It’s not easy. It takes times and patience. You need to change your thinking amd stop letting it define WHO you are. Don’t view yourself as worthless or others will too. You are worth more than you realize. Don’t play games by wasting time. Learn your body, educate yourself, keep going until you find that right doctor and the medication combo that works for you. Fight! Seek support and laughter…LIVE. You don’t have to explain yourself to anybody! They either get it right or they get LEFT. Don’t give them excuses for their bad behavior. You’re doing the best you can and honestly, you’re probably doing better than them!

Take a dose of support. ❤Administrator to Meniere’s Without Borders

I had an entire platform laid out to write today. Then my memories popped up on my personal Facebook, changing all my thoughts.

There is an important question I get asked often. How do I live with Meniere’s and Vertigo and spend time with my kids when my conditions are in a flare? Many people feel guilty in their disease; whether it’s feeling inadequate with themselves, their spouse or when it comes to their children. I honestly can say that I understand.

My children are now at ages where they can entertain themselves. However, it was not always the case. And, even though they are a bit older now (15 and 9), I still don’t want their iPhones to become their mother!

I want to help everyone I can with Meniere’s Disease and Vertigo disorders. I must say, my heart relates with mothers as being a mom is a job in its own.

So, what to do in a flare? Buy a cheap blow up mattress to fit in the general living space of your home. Set the kiddies up with their snacks and treats. Put on a good family movie and get your pillows. Relax on the couch to get your rest. In my own experience, one of two things will happen. Either you’ll get that 2 hr nap in that your body needs to fight or, your body will rest while you enjoy the movie. I can’t make any promises as I don’t know you or your children. However, for me, this picture from 5 years ago, proved I must have done something right.

Wishing you all a spin free day. ❤

This was a letter I wrote to Huey Lewis after his appearance television. Many warriors were disappointed and wanted to be heard. I decided to be the voice. It has liked several times by his manger for social media, sent to representative and handed to the governor of Albama.

Dear Mr. Lewis,

I am the Administrator for “Meniere’s Without Borders” here on Facebook. I, with my team, inspire and help over 1.5k (edited) people global (edited) everyday. Our group offers inspiration, advice, support and HUMOR. Why humor? Well because you and other sufferers will unfortunately soon find out that you need it. Meniere’s Disease is not a choice, how we handle it is. I am truly sorry for your recent diagnosis.
I thank you for your appearance on the Today Show however, Menieres is so much more than it was probably preceived by viewers. Hearing loss and Tinnitus (roaring) is only two symptoms of this monstrous disease. A disease that not many know how to spell, let alone, understand. Vertigo, ear fullness, head pressure, balance issues, vomiting, drop attacks are just a few I’ll mention. Some lose jobs, marriages, relationships, friendships and normal every day activity. You were right that we all experience this disease different. I am going to assume you are unilateral. I am 17 years bilateral (both ears). I don’t feel the true nature of this disease was exposed and us warriors want nothing more than awareness. We don’t want pity or sympathy. As you will learn, you will start to “play well” while some think you “play sick”. You are an amazing musician and I have no doubts that your fans will always stay loyal. Understanding this demon MD (Meniere’s Disease) is going to take much more than 4 mins.
I tell my group this and I want to extend it to you: you must stay positive in the mind. It is key to being a warrior. You don’t know this yet, but MD wants it ALL. It wants your life. It is YOU who must chose to fight. It will, I promise, knock you down. But don’t you dare let it knock you out! There is nobody Mr. Lewis that is going to go as hard for you as YOU. It’s like a boxing match. You will take hits. And when you go “back to the corner to rest” know that that is also fighting. Yes, resting is part of the fight. Just know there are so many in your corner on this same journey. On bahalf of my team leaders and members, we wish you the best as we are sorry to say that no, “you don’t get better”. You just learn to get better at living with it and finding a quality of life. Xx

Sincerely,

Gina Marie -Meniere’s Without Borders Administrator
If anyone with Meniere’s Disease would like support, you may visit:
https://www.facebook.com/groups/1185703704897528/

“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.

💥INSPIRATION💥

I use my personal experiences with life and MD to encourage others. I do posts with selfies asking to see the same; because I want to see the faces of people I possibly inspire. I share my writings because I want to touch lives and spread awareness. I run around like crazy begging my doctors for video clips because I want answers to share for our health. I do my hair and make-up because MD or not; I care about those things for myself.
If any of that makes me wrong, I don’t ever want to be right.

Todays goal: Be you! Who you are is just perfect. Some will love you and some will hate you. Don’t let either define you. Life and MD swing hard. Your self esteem and mind set is key. The big word here is “self”. Sure you risk being judged, but nobody is ever going to go as hard for you as YOU!

“Little girls know they are lovable because big people love them. Big girls know they are loveable because they love themselves. It’s all a matter of perspective” (Morgan Rose).

Be well today. ❤

A major thing I’ve learned in my 17 years with bilateral Menieres, is to surround yourself with people who push you to do better. In life, and especially living with MD (Meniere’s Disease), there’s no room for drama and negativity; just higher goals and bigger motivation, good times and positive energy.
Google says salt is our biggest trigger. I can’t argue googled sites but, I can tell you I learned from real MD warriors that emotional stress seems to trump salt. We are all the same yet different. However, I rarely see anyone post that stress of any kind is not a trigger.
Every warrior will get knocked down at some point. But don’t ever let someone, something, life or MD itself-ever knock you out.
Just like a boxing match, you need to fight. You’ll take some hits. And then, you need to go back to the corner to “rest”. That is where you will find all the wonderful groups you belong to cheering you on with advice, support, inspiration, and sometimes even laughter. Just remember in the ring, nobody is going to go as hard for you as YOU. We’ll be beside the ropes cheering you on. In the words of Ali, “Now, I’m going to show you how great I am.”

Do exactly that! ❤

It’s rare I see people actually fall into what we were informed are the three stages of Meniere’s Disease. I consider myself in stage four. Stage four, for me, is actually stage five of the mourning process: Acceptance. BE CAREFUL how you interpret that. Acceptance is like forgiveness. We don’t want to but, it’s necessary to move on in our journey.

Last year, I wrote a poem remembering my mother and our struggles that actually binded us closer in our relationship. I miss her terribly but, I have accepted the fact that she was taken from me. In my opinion, the process of mourning her loss, is the very same process I went through with Menieres. DENIAL of the diagnosis, ANGER that my life would never be the same, BARGAINING with God and life in an attempt to change it, DEPRESSION that Menieres was now a part of me and ACCEPTANCE that it does not define me.

I tell my members in my Facebook group, Meniere’s Without Borders; an important view I see. Meniere’s Disease was not your choice; how you handle it-is! Put trust in the process.

THE DEMON OF TIME:

The greatest high I ever had was the lowest ground my soul ever crawled.

For I climbed to the bottom in the darkness of pain, searching for the light of what I never lost.

I’ve shivered in the warmth of the forgotten memory of what never was.

For I’m screaming in the dead silence in a crowded space of countless time.

I can touch the numbness of a beating heart that stopped long before it mended the pieces.

Blinded eyes stair at the unforseen sight of binding ties to finally set me free.

For the biggest demons I ever fought were the ones that made me comfortable with who I never was.

(Written in memory of Edna Kalitz and Dedicated to MD sufferers everywhere.)

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My son was training in martial arts since he was 4 yrd old. He is now 15. I have been to more tournaments than I can count. However, WHEN MENIERE’S STARTS ACTING UP, I always sit back and recall the one sparring match that changed my son’s entire karate journey in so many ways.

My son never liked to spar even though they wear protection gear, cups, mouth pieces and must follow rules. However, he was great at it. He would bounce up and down like a boxer and I looked like Rockys wife peaking through my fingers as my hands covered my face. Every once in awhile, I’d yell “yes, Daniel!” when he scored a point. Three points to win and my son always had me holding my breath.

The match I’m about to speak of is inspiration from just a different angle. We were at the mats and my son was sitting ready to be called to fight. One of the students from his school was first and went up against this huge kid who was acting crazy. As a karate mom, I’d never seen such lack of humility and respect. This 12 year old was just filled with rage. Even worse was his mother cheering the behavior. The kid hit so hard and in red zone, the other child fell and was unable to fight. The Masters called penalty but, here comes the next fight up against this maniac. Again, the kid goes nuts and backs the other child out of the ring. Penalty two. You get three and then your out by disqualification. And what do you know!? Yup, my son’s turn. (Follow along, my inspiration is coming. Lol). My son is not big by all means. My heart dropped. He went to his Master and I could see his Master talking. I’ll never forget the fear drain immediately from my son’s face and a look of confidence I’ll never forget. Daniel stepped into the ring, but he was not the child I was use to seeing. HE STOOD COMPLETELY STILL. The Master put down his arm and yelled “fight!”. Daniel did not move. The other kid was going crazy. Yelling, hitting his gloves together, bouncing…YET… my son stayed completely silent and still. I’ll never forget my world becoming silent. Not because I’m partially deaf but, because I felt like I was stuck in this moment of time that seemed like forever. Like I was in some bad karate movie. My mouth was moving, but no sound came out. It’s was like the crowd was frozen and an eerie feeling filled the room…..

*Have you ever been there? When MD is just crazy with no mercy!? When the tinnitus was so loud and the head pressure unbearable? When MD is just ready to throw all the punches and knock you out spinning to the floor? Have you ever feared it’s monstrous ways fighting you?*

……the boy finally charged my son like a lunatic. I gasped and then held my breath. My son threw one hit. Directly to the solar plexus. Daniel watched him fall and knew it was over. He instantly turned around and dropped to one knee out of humilty and respect for the fight, not his opponent.

*What’s the point? Sometimes when MD is attacking to it’s fullest potential, when its out of control and incredibly scary…just BE STILL. We tend to become filled with anxiety, scrolling through FB for a magical answer, jumping for any sense of stability. Sometimes, you must just BE STILL. Embrace it. Let yourself face it and breath with confidence that you can and will end this match! Whenever I feel unbalanced and attacked; whether MD or just life….I remember that day. The day the earth stood still and a few words of inspiration changed everything.
CHANGE your thinking! BE STILL. STAY FOCUSED…fight and win!

Gina
Administrator to ‘Meniere’s Without Borders”