Monday, April 12, 2010

My Thorn

I have Meniere's disease. I have mentioned it before, but I have never really explained the impact it has not only on my life but also on the lives of my family members. It has been a ride.

The Meniere's Foundation web site has this to say about the disease:

Meniere's Disease is a progressive condition of the inner ear. It affects men and women equally. It usually occurs between the ages of 30 and 60, but can occasioanally affect people outside this age group, including children.

The main symptoms of Meniere's Disease are:

  • Vertigo - dizziness
  • Nausea and vomiting
  • Hearing loss or over-sensitivity to loud sounds
  • Tinnitus-noises in the head-which is generally low-pitched or rushing
  • A fullness feeling in the affected ear.

Many people with the disease are 100% disabled, unable to work, drive, or take care of themselves. Other people my only feel slight dizziness periodically. The cause of Meniere's Disease is unknown and currently there is not a cure.


Now, to be clear, those who have the disease do not experience all the symptoms at one. But I'll get to that in a minute.

I first developed symptoms of the disease about 11 or 12 years ago. I had been having some other sinus issues, but nothing extraordinary. While shopping at Target one day, with my then 3 year old son, I begin to feel unsteady. It got increasingly worse until I couldn't really walk straight. Then I noticed that I was very sick to my stomach. I stumbled my way to the bathroom where I called my husband to come and get us. He brought a friend with him to drive the car back home. As unnerving as that experience was to me, what bothers me most when I think back on that day is that while I could hardly stand up and certainly couldn't walk straight and had a very small child with me alone in a huge, public place, not a single person asked if I was OK or needed some help.

Anyway, it passed fairly soon. I called my doctor who had me come in. He decided it was probably a result of my sinus issues and the ears are connected to the sinuses and yadda yadda, these things happen.

The next episode resulted in my one and only ambulance ride. I was on field trip with my son's preschool class. We were at a local grocery store and that unsteady feeling started again. I was walked over to the little cafe area. I got progressively more dizzy to the point of landing on the floor vomiting. Paramedics were called. They kept asking me if I had recently suffered a head injury. All I could tell them was, "I think it's my ear."

At the hospital I had my head scanned for the first time. Nothing there. : ) I was given something to settle my stomach. It took a few hours, but the episode passed.

And this has pretty much been the pattern since then. I am a ticking time bomb. I have the constant ringing and whooshing in my left ear. I have diminished hearing in that ear. Those are the only daily symptoms I experience. Other than that, I am perfectly normal. But occasionally, usually without prior warning, I may suddenly experience extreme vertigo.

If you have never experienced vertigo, it is really hard to explain. Dizzy only begins to explain the sensation. There is a profound sense of movement where there is none. If I try to focus on something, it flies across the room. But then it comes back to place and flies again. Of course, not really. How frustrating that must be for those who must watch me stumble and fall and drag me to the bathroom. In their reality, everything is fine. Nothing has changed. I am experiencing my world spinning out of control.

I have gone through times when I had one of these episodes a day for several days. I have gone days without one. I have gone weeks, months even. And most recently, I have gone years. It has probably been 2 - 3 years since I had a real attack of Meniere's. Until a couple of weeks ago.

I woke up just after 5 in the morning with that familiar feeling. Now, I must add that if I lay on my left side and remain still, the vertigo subsides. So I stayed in bed. Sometime late that morning I simply had to go to the bathroom. My husband helped me stumble in there. It was such an ordeal that I just stayed. I lay on the bathroom floor. These things usually last for a few hours and then I sleep it off of another few hours and everything is back to "normal" again.

That didn't happen this time. I lay on that floor until bedtime. (Let me tell you something, let your tired, old bones lay on a bathroom floor for 12 hours. Your bed will never feel as soft as it does when you finally get back into it.) I woke up still unsteady. It wasn't until that afternoon that I could see a light at the end of the tunnel. It did ultimately pass and things returned to "normal" again.

To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
- 2 Corinthians 12:7-10

I have accepted this as part of my life. By all appearances, I am a normal functioning woman. I am independent. I am vain and concerned about my appearance. My body moves freely under my control. I have no appliances that I must drag around with me to ensure my health or well being. I am poised and confident. But I know that at any given moment I may suddenly not be able to walk straight or wind up on the floor vomiting and not be able to do a single thing about it. I may be at the mercy of others to help me with the most basic of functions. It can be quite humbling.

I have found a vitamin regimen with which I have had great success. I believe that is part of the reason I have gone so long between episodes. I take a ton of pills twice a day, but that is a small price to pay for being able to function on a daily basis. I also try to avoid excess salt.

I have asked God to heal me of this, but He has not. I don't hold that against Him. I have accepted that this is my thorn. As long as I struggle with this, I can't be too proud. Too independent. Well, I can, but I have to know that I may shatter my image at any moment. I wouldn't say that "I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties" just yet, but I can relate. While given the opportunity, I would definitely choose for this to be taken from me, I try to embrace the chance to rely fully on God and those who must tend to me when I am weak. And as thorns go, mine could be a whole lot worse.

Do you have a thorn?
Tell me about it.

And do you know anyone else who had Meniere's? It is much more common than you might think.

8 comments:

Tinctures 'N' Thyme said...

Wow, what an amazing post! I honestly didn't know -- if you had mentioned it before, I missed it. My heart breaks at the story of you in the store with no one helping you.

You are such an amazing woman -- strong and true. I love your perspective on this, and can't believe doctor's haven't found a cure.

What's my thorn??? Hmmm... let me think on that one.

For now, I'll keep you in my prayers. =)

(P.S. As I look down at the "captcha" code below, it says "hosanna"!! Can you believe that?)

~Maria

YD, sometimes with Samantha and June said...

My goodness Julie! I am so sorry that you have menieri's. It made me angry that no one at the store helped you.
Please be strong. Next time when I get a little dizzy from flying, I really shouldn't complain.

Michelle Potter said...

Wow, Julie. I don't know what to say. I'm sorry you have had to go through this, but I'm impressed by your strength.

WendyDarling said...

I had never heard of this disease; thank you for sharing the information.

You are very strong! I too was upset that the people in the store did not help you. ;-(

I suffer from sinus pressure headaches. I never know when I will wake up with one. It usually has something to do with the weather though. Generally Excedrin Sinus and an ice pack on the eyes helps it go away.

Tipper said...

Wonderful writing. I've never even heard of the disease-but the way you described it's effect on you-and how you handle it-is really inspirational.

Blissitydoodah said...

I don't know you...met you at PW's this a.m. :) But I wanted to be with you at Target that day!
My thorn is MS...it takes on a lot of different faces, keeping me guessing.
Unreal about that code of "hosanna" :)
Hugs!

Kelly @ The Startup Wife said...

This was really powerful. (Also, one of my favorite food bloggers had Meniere's diease as well! She writes about it sometimes: http://cannelle-vanille.blogspot.com/. I'd never heard about it until I read it on her blog!)

I too have chronic health issues and I've thought about this sometimes too, about it being a thorn. As much as I always pray for healing and for things in my life to be going great, it's when things aren't that I'm most dependent on God. (Haha, don't you hate that?) Thanks so much for sharing this.

Lori said...

I also live with meniere's disease. I am homeschooling my two girls and live in a house with stairs. Falling down the stairs is the scariest and most unsettling part. I am thankful that you shared so openly about a disease that can be invisible.