The following
story is a day in the life of Lorelei. This is written in hopes that the friends and family of
Meniere’s patients may
get a better understanding as to the challenges and constant misunderstandings that we endure.
Lorelei's Story
I was diagnosed in '98, although I've had tinnitus for as long as I can remember (both ears and I'm just past 41). I didn't think anything of it, I thought it was normal, until one day I made a comment to my sister, the nurse, that my doctor had asked me if I had ringing in my ears and I told him no, but I was thinking to myself, not any more than normal. To which she replied, it's not normal. Oh.
That was January '98. In May of '98, I was getting ready for a job change (from a stressful one to a less stressful one) and my two weeks notice to my current employer turned out to be the end as I had my first experience with a drop attack. Yikes! My poor husband was frantic. We went to our doctor, but by the time we got in the episode was almost over. I was referred to a neurologist and she diagnosed the Meniere's.
I was okay until '00. I had and episode called my primary care physician who referred me to an otologist, two hours away. He ran me thru the barrage of tests and was uncertain if I had Meniere's or Vestibular Hydrops. He put me on a daily dose of Hydrochlorathiazide and Potassium Chloride, gave me prescriptions for Meclizine and Valium and sent me on my way. See you in 2 months, 6 months and then a year. I had a couple of episodes a year and thought, well if this is as bad as it gets, it won't be hard to live with.
In February of '03, we took a family trip to Disneyland. The kids were old enough (10 & 6) to appreciate it, my husband and I were young enough (54 & 40) to appreciate it. An overall drive of 12 hours. For three days we rode every ride we could, some of them 2 & 3 times. What a great time. Thank goodness I had the foresight to take my Meclizine and Valium. On the fourth day, it was time to head home and I was sick. After four days, I felt okay to get back to work. And after the next week, except for the ringing, I felt fine.
In March of '03, we finally got an ENT in our area, and since it was time for my annual checkup, I promptly had my records and test results sent to him. Hey, let's be realistic, I don't have time for a four hour round trip for a 10 minute appointment! My ENT is direct and to the point, I like that. After he had checked over my records and heard my story, he said the words, it's Meniere’s. He renewed my prescriptions and said we'd keep the same schedule, see you in a year. Hahaha... I've had episodes each month since July. In November, they started coming quicker, lasting longer. The doctor switched me from Valium to Ativan. I missed a month of work. Now how are you supposed to avoid stress, when you're down to one income? In December, I had injections of Decadron, 6 days apart. I was put under general anesthesia for this procedure. All I can say is, Thank God! I don't think I'd have been able to go thru the 2nd one if it had been a local. Unfortunately, the last Sunday of December, I had another episode. Missed another week of work.
I went to the doctor today, January, '04. He asked how I was doing. Today was the best day I've had in 8 weeks. A little off, but bearable. We're going to wait 3-4 weeks to make the next move. If I don't improve or get worse, I'm back to the 4 hour round trip, different doctor. My ENT doesn't recommend the shunt, he's thinking of either the vestibular nerve section or the Gentamycin injections to be-still the balance system. So, in a month I'll see where I'm at.
Because of my fears of driving our kids, my husband has had to take on the family taxi service. He's doing great as Mr. Mom. Helps them with their homework, thank goodness he's a good cook! Of course, the kids like it better when I'm able to sit up and talk and they're getting tired of me crawling around the floor, so we've found a cane. Of course, I refuse to take it to work, that would be admitting to the rest of the world there's something wrong with me.
We have a pretty close knit group at work so thankfully, my fellow employees and my bosses are very supportive and we're able to tease and joke about how I stagger across the lobby are walk real close to the walls when I can. Heaven forbid if I drop something! It stays there until someone comes by me to pick it up. Some of my customers know what's going on and for the most are trying to understand.
When someone asks how I am, I usually reply, if I'm vertical it's a good day. I tell people it's not terminal, just unbearable at times. I sleep with the TV on, but not too loud. I try not to take the Valium or the Ativan unless I absolutely have to because I don't want to become addicted. I don't smoke, drink, have any caffeine (which is difficult for a chocoholic), avoid salt and drink lots of water. I don't bend over, try and avoid really loud noises (I carry ear plugs with me as well as my meds), don't watch commercials or the trains that run right by my house.
I try and stay positive and make jokes about being a dizzy dame. Some days it's not easy, but if I don't laugh, I'd end up crying and I refuse to feel sorry for myself. I've had to give up some independence, but my spirit is strong and I'll do the best I can, one day at a time. Sometimes, one moment at a time.
I have to give a lot of credit to my husband, a recovering alcoholic. He keeps me going. Give it over to the higher power when you can't deal with it, Lore. Just let go of it. So I'm trying to control my stress levels.
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