I had an amazing experience last week. A man who works with Caleb told him his sister-in-law was just diagnosed with this really odd disease and she’s having a terrible time with the symptoms. She keeps getting dizzy and hasn’t been able to make it to work in the past two weeks. Caleb asked if she was diagnosed with Meniere’s Disease. Sure enough, the man looked at Caleb with the biggest surprise and asked how he knew about it. Caleb told him about my experience and suggested his sister-in-law call and talk to me.
About two days later I received a phone call from her (Sandra). As soon as I heard Sandra’s voice I knew God had put me in her path. A few months ago she woke up with a loud noise in her ear and couldn’t hear very well. A couple weeks later, she started having uncontrollable vertigo. Of course, with the vertigo came nausea, weakness and vatigue. Her first experience only lasted about 15 minutes, but each time lasts longer and there’s no time to prepare before it happens. She’s tried to go to work, but hasn’t made it an entire day. Her husband is away from home due to his work schedule/location and her daughter tries to help as much as possible.
I could hear the frustration, anxiety, fear and hopelessness in Sandra’s words. I’ve been there. And at that moment I could see myself back home in our living room. So sick I couldn’t move, speak or breathe; Caleb rushing to the bathroom for the trashcan and putting ice water on my neck, me just praying over and over again that it would end.
I had to tell Sandra my story...and I did. I told her about every dizzy episode, every medication, every steroid injection, every surgery, and every doctor visit. I kept it honest and direct. I shared some tips on what to do when an episode happened, which she could share with her daughter (Caleb developed a choreographed routine that saved us many times). I suggested writing these tips as instructions on an index card with emergency numbers and keeping it with her at all times. When an episode happened she could show someone the card so they would know how to help and who to call.
The good news for Sandra is the medication and adjusted diet has helped decrease the severity and length of her dizzy episodes. This means these things are working. She has an appointment for steroid injections this week.
I think the best advice I could give her was 1.) listen to the doctors and do exactly what they ask and 2.) be patient- with the doctors and the people around her. This disease affects each person in a different way. The doctor needs to determine what is best for her situation. Also, the people that love her and take care of her will sympathize with her, but will NEVER understand what she is going through. The term vertigo doesn’t do this horrible disease justice.
After I hung up the phone, I did two things. First, I cried. I’ve spent almost an entire year healing and recovering from Meniere’s Disease. It was an overwhelming moment for me to relive what I went through and my heart hurt for Sandra. I cried for the both of us. Second, I made a promise to share my story with as many people as possible. There is not enough information out there about this scary and life altering disease.
This post is my first “share”.
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