Being a better Advocate – updated

little butterfly on my Echinacea plant

I’ve always said that we must be our own best advocates.

We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring.  For me, I like doctors who will think outside the box.  Who try empirical evidence, instead of thinking the normal is normal for everyone.

It’s also very important to make sure your doctors understand what is going on with you.  That has been a hard thing for me lately.

I didn’t want to admit that I’m not doing well.  I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards.  I’ve been keeping my doctor advised of my situation, but I have been downplaying it.  Stuart says I haven’t even been honest with myself.  I haven’t admitted that Meniere’s has been ruling my life again.   No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping.  I got the Wii Game Just Dance this week.  It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.

So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.

I realized that I have not been taking my own advice.  I have not been a good advocate for myself!  That is going to stop.

If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office.  (Yes, Stuart.  Another way this is affecting me?  I can’t really hear on the phone very well.)  I’ve also decided I don’t feel comfortable driving.  Feeling a bit drunk all the time, is not the way you should feel when you are driving.

I feel much more empowered now.  Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.

**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda).  He said, “It might be a good idea to get another myelogram.  What do you think Linda?”

I’ll keep you posted on the outcome.


Working Girl

First, I’d like to thank all of my friends for checking on us after the storms hit North Carolina.  We were very fortunate, all we had at our house was a lot of rain.  The tornadoes came through the next town over.  Raleigh was hit pretty hard, but Durham wasn’t hurt.  It means a lot to me that so many people cared enough to check to make sure we were alright.

This week I’m working for my husband’s company.  His boss and wife are on vacation, and they needed someone to answer the phones and asked if I would be interested.  I was thrilled that I could say yes.  Just think a short time ago I couldn’t commit to anything like this.  Also, I couldn’t hear well enough to talk on the phone.  Thanks to my new iCom link for my hearing aids I can hear the phone right in my hearing aids, it’s great.  It’s like having a blue tooth in both ears at the same time.


This little box connects my hearing aids to my phone, TV, iPod, and/or computer.  If I’m watching TV and the phone rings it will shut the volume for the TV off so I can answer the phone.  How cool is that?  I just love this little box.

I’m still so amazed at how much my life has changed.

However, last night I had something unsettling happen.  I was putting my hair up in a pony tail, I turned from the mirror and the world did a little dip.  Just for a second, and it didn’t come back.  But before I would have thought that was the beginning of a vertigo attack.  My stomach did a flip-flop, but that was all.  Hopefully, it’s nothing, but when you’ve had my past experiences you know it could mean something.

What Wonders I am Hearing.

I’m so very happy with my hearing aids.  I had no idea I was missing so much.

My hearing aids, with a nickel and dime to show scale.

My right hearing aid has a larger ear piece because that ear has more severe hearing loss.

When I first put them in everything sounded so loud.  I could hear my own voice way too loud, but within just a couple of hours I wasn’t noticing my voice, and I was enthralled by all the little sounds I could now hear.  The audiologist told me that I might find some noises annoying, and she could program my hearing aids so they wouldn’t bother me.  Some people find the clicking of typing too loud, or high heels on the floor, or even news paper.  I’m more fascinated by the fact that I can now hear these things.   However, I have found one noise that is bothersome.

I told my husband a few days ago, “My hair is too loud.”   (he laughed and said it sounded as if I dyed my hair pink or something)  Seriously though, I hear my hair brushing against the hearing aids.  It makes this swishing sound that makes it hard to hear other things.  When I got my hearing aids I had my hair in a pony tail, I didn’t know my hair would be such an annoyance.  I hope she can program them so I don’t hear that as much.  The microphone is at the top of the part of the hearing aid that goes behind my hear, so when my hair is down my hair covers the microphone.

This is what my right hearing aid looks like in my ear.

Hearing aids are expensive, and unfortunately they weren’t covered by my insurance.  However, they are worth every penny.  I’m so thrilled with them already.

Next week I will be getting an iCom, it’s a device that makes it possible for my hearing aids to be able to interface with a diverse range of communication systems like telephones, televisions, MP3 players, computers or other audio sources.  I can’t wait to see how different talking on the phone will be.  I’m still having a bit of trouble with that.  It’s possible, but not ideal.  With this device my phone will ring in my hearing aids, and I can answer it by clicking on device and I will hear my calls in both ears through a blue tooth.

I’ll let you know how it works after I’ve tried it for a little while.

Oh, the things I can hear!

Gardening, Fostering Classes, Housework, Hearing Aids…a busy week.

What a long title huh?

Boy am I busy this week.  Just think a couple of months ago I wouldn’t have thought about doing any of the things I’m doing lately.  (or planning to do…heck, I wouldn’t have made plans.)

So yesterday and today we started working in our little garden patch in the front of the house.  When it rains we have a river running through there so we had to be inventive.

Front Yard Garden, in progress.
Sandy walking through front garden.

I wish I had a before picture, then you would know just how much work we have done.  We decided to work with the water flow instead of against it.  We put some small pebbles to help the path of water, so it won’t tear up the garden, then sat potted herbs on top of the rocks.  (We still need 2 more pots to fill the area, but our local gardening center was out.)  The pots contain herbs, we have day lilies coming up from last year, and we put out wild flower seeds to fill in.  We’re also going to put a rock border around the front.  (We found a lot of cool rocks in the woods right behind our house!)

Tomorrow night we start fostering classes.  They will need to do a house visit to inspect where we live, so we need to get the house in order…and ready for a child.  We also need to sign up for CPR classes, including CPR for children.  And we each need to make appointments to bet a physical.  Lot’s to do, but totally worth it.

On Friday I’ll be getting my hearing aids.  How cool is that?  I just can’t wait to hear what I’ve been missing.  I wish I was getting them before we start our classes, I’m afraid I won’t be able to hear what’s going on.  Luckily, I’ll have Stuart there to help.

I’m still having too many headaches.  I do wish they would go away.  Perhaps the next time I see my neurologist she will be able to do more.  I’m also having more hip pain than usual, of course I’m doing more.  But that doesn’t mean I should be in pain all the time.

What is everyone else up to?

Thank you! and What’s up with Wendy?

First I would like to thank all of my contributors to the Meniere’s Treatments Series.  I hope we all learned something (I know I did).  I’m also hoping that this series will help those who are going through all of this understand that they are not alone.  That not all treatments work for everyone, but there are many treatments out there and hopefully one will work for them.

Thank you to all who contributed, either through a guest post, or by commenting.  This could not have worked without all of you.

It’s been a while since I posted about what’s going on in my life.  So, on at the risk of boring you, here it is:

NOT Gluten Free!

The biggest thing that is consuming my mind today is the trial against Paul Seelig.  The man who is accused of selling bread as gluten free when in fact is wasn’t.   I have to testify against him on Thursday.  This is just so hard.  I don’t want to see this man again.  I don’t want to relive what he put me through.  I read a post on Facebook by a woman who was at the trial yesterday.  They were selecting the jury.  She said that he kept chuckling.  What could possibly be so dang funny?  She also said that many potential jurors said they couldn’t be impartial because what he did was so horrible.  Hmmm, what about innocent until proven guilty.  I mean I know he’s guilty because I was there, but if I wasn’t I don’t think I could say that.

Of course, that is what I said the whole time all of this was going on.  People were saying they were getting sick from the gluten free bread this man was selling, heck I was sick.  But there was only a few people, and I thought I was sick from Meniere’s.  I felt that people were publishing things on their blogs about his selling bread as gluten free before they really had any proof.  Plus, he kept telling me that he was setting up a time for me to come in to his bakery and be there when he had testing done, so I could witness it.  He even applied with the Gluten Intolerance Group to have his facility certified gluten free.  I kept thinking, why would he do this if his products were in fact not gluten free.

However, even if he was guilty (as I now know he is) I felt that it was irresponsible for people to be publishing this without proof.  And I didn’t feel like a home gluten test was enough.  After all, we wouldn’t know if it was cross contaminated or not.

But the sad fact is, I believed him. He told me that he sold to the government and to hospitals.  He said he only sold to the public because he wanted people to be able to have good gluten free bread.

I look back at the emails we wrote to each other and I feel so very stupid.  Why did I believe this guy?  I think I just couldn’t believe that anyone would purposefully contaminate people.  And how could he be so stupid that he didn’t think he would get caught?  He was making people sick, did he think they wouldn’t eventually put it together?  I fell so betrayed.  He must really have been thrilled to have had someone who was so gullible on his side.

Ok, enough about that.  I’ll let you know how it goes after I testify, and then after the trial is over.

making a mold of my ear for my hearing aids

I have some good news.  I was fitted for hearing aids last week.  I will be getting them on the 8th.  I’m very excited.  Think of all the things I’ll be able to hear, that I can’t hear now.  hehehe.

The fructose intolerance diet is going well.  I saw the nutritionist on the 23rd.  She put me on a pretty strict fructose elimination diet for 4-6 weeks.  Then after my body starts absorbing nutrition again, I can try to add in new foods and see how I do.  Right now, I’m doing so much better.  No GI upset.  I did have a little of one thing on my NO list, and I got so bloated, and gassy.  Then within an hour I had a horrible migraine.  I’m really hoping that once I get this food intolerance under control I will stop having so many migraines.  (one can hope right?)  According to our scales, it looks like I’ve lost about 2 pounds this week.  Oh, I forgot to mention, the nutritionist told me I’m not eating enough.  I’ve been trying to eat more calories since I saw her, but it’s really hard for me.

I joined Spark People, an online weight loss community, so I could log everything I eat and keep up with my symptoms and my calories.  If you happen to be over there, look me up, my username is ONEARTSYCHICK.

One more piece of news.  Stuart and I are starting classes on April 5th, to become Foster Parents.  I may need a lot of advise from you who have children.  Wish us luck!

As you can probably tell, the patches are still holding, and I’m not having any vertigo, and the disequilibrium is gone.  Hearing is stable.

My hip is bothering me much more.  I’m sure it’s because I’ve been doing more.  But it’s a real pain….literally.  I’m also having more trouble with the pelvic pain, I’m sure that’s because I’ve been feeling a little more amorous lately, since the world stopped spinning.  However, just because I know why these things are bothering me more doesn’t mean it should be that way.  I should be able to walk and not hurt, or have sex without pain.  One thing at a time.  Perhaps I will get there.

What’s going on with you these days?