Tag: Meniere’s Disease

A little good (lumbar puncture results) and a little bad (a very bad night).

On By WendyIn Meniere's Disease3 Comments
Dancers - painting by Wendy Holcombe

I thought about posting a picture of a lumbar puncture here, but it’s really kinda scary looking.  So I thought I’d just post a picture of something happy.  After all, the results were pretty amazing.

I went to Duke University Hospital’s Neuroradiology department yesterday and had a lumbar puncture to measure the opening pressure of my spinal fluid.  Dr. Gray does this with the help of a CT scan to make sure she is in just the right spot.  She also completely numbed the area so I didn’t really feel anything.  (Except the stinging from the numbing medicine, but it doesn’t last.)  The hardest part of this test for me is that I couldn’t talk and I couldn’t see what they were doing.  When I’m nervous I crack jokes and generally just talk a lot, so keeping quiet was not easy for me.  I’m so very grateful to Dr. Gray for allowing my husband to come back with me during the procedure.   He stayed right there and held my had the whole time, he really does doat on me during times like this.  (Thank you honey.)

The insertion of the needle doesn’t take very long at all, but it takes a long time to actually measure the opening pressure.  Before the procedure Dr. Gray told us that “normally” below 10 is low and above 20 is high, but she realizes that not everyone has the same “normal” reading.  So my opening pressure was 15!  Can you believe it?  How much more in the “normal” range could you get?  Luckily, Dr. Gray uses emperical evidence instead of just saying, ok, you’re normal when test read normal.  She decided to add a little artificial cerebral spinal fluid in to see what happened.  At first I didn’t really notice anything, I was concentrating so much on my back, I didn’t realize my headache was gone.  Then she kept talking to me and I realized I could actually hear her.  Not just a word here and there so I could figure out what she was saying, I could HEAR her!   More than that, I could hear her out of my right ear, the ear that I have severe hearing loss and haven’t been able to hear someone’s speech clearly in that ear for a very long time.  No, my hearing wasn’t perfect, it was still a little muffled, but I could hear.  I had been getting pretty dizzy during the procedure and it was gone.  How cool is that?

The results?  Dr. Gray says I am leaking spinal fluid and she needs to find it and patch it.  So I will be having a myelogram on November 24th.  They will insert a contrast dye in the fluid filled space around the spinal column.  Then I will have a CT scan and the leak should show up.  Dr. Gray will then patch the leak(s) with my own blood.  (I thought that was cool.)

I asked Dr. Gray, “What if you don’t find a leak?” She answered, “We will.”  She is a very up beat doctor who gets so excited when she discovers something.  She is making such a difference in so many people’s lives.  She told us about a couple of her patients, one had not been able to hear for over 18 months, during her procedure she started hear again.  She has taken the pain of migraines away from many patients.  She is a very open and caring person, you just can’t help but like her as soon as you meet her.

I stayed in recovery for an hour, got a little to drink and ate a banana.  Then I walked myself out.  On the way home we stopped and got something to eat.  My back really started hurting while we were sitting there, but as soon as I got up it helped, and when I got home and lay on the couch I felt much better.

 

Chilled Disequilibrium by Wendy Holcombe

 

Unfortunately, about 12:30am I woke up with the vertigo starting.  I took Valium, and Phenergan but everything just got worse.  I had the complete spinning fast rotational vertigo complete with some of the most violent vomiting I’ve ever had until about 4:30am.  At that time I simply collapsed from complete exhaustion.  (during all of this I had 3 Phenergan suppositories, the first was lost with diarrhea.)  I do not remember being that bad off since the time my husband called for an ambulance because I was scaring him so much.  He asked many times last night if I wanted to go to the hospital, but he had to agree with me that the last time I went they couldn’t do anything that we weren’t doing here.

Does anyone else hear unusual sounds during an attack?  I don’t mean just tinnitus (the roaring was so bad last night it was driving me insane).  But I hear things that sound like words off in a distance.  It’s most disconcerting.  Lately, with my tinnitus I’ve been hearing a tick.  When I’m trying to go to sleep at night I really notice it.  It’s not a rhythmic ticking sound, just once in a while I’ll hear something tick or click.  I’ve asked my husband if he can hear it and he can’t, I thought maybe I was just hearing a certain frequency when I couldn’t hear the others so I put in an ear plug and I could still hear it.  This new noise is most annoying, I’ll be almost asleep and then, Tick, and it startles me awake.

Today, I feel horrible.  I haven’t been out of bed, except for the many trips to the bathroom with diarrhea.  My stomach hurts so much every time I eat or drink anything.

Stuart talked to Dr. Gray today.  She is sure that this severe attack was caused because she made things better yesterday and now it is leaking out again.

I will be so happy when this is over.  I don’t know if she will find a leak, I hope so.  If she doesn’t, I’ll cross that bridge when I get to it.

Right now, this looks so very promising.   Of course, I will keep you informed.

It just amazes me at how much we have to search and search to find the right doctors.  I’ve seen so many doctors and, let’s face it, some of them shouldn’t be practicing medicine.  Many are just in it for the money.  Many get very uncomfortable when your symptoms are out of their comfort zone and they just drop you.  I’ve had a doctor who did that, he actually called me on the phone and said he couldn’t see how to help me and didn’t think I needed to come back.  No referral to a doctor he thought might be able to help, no option to for my medications, nothing.  Those are doctors who just don’t care about their patients.

You could also do a lot of research trying to find the right doctor, but then not have the resources to go and see him or her.  This really bothers me.  I wish there was some way I could help.

I feel very fortunate I finally found Dr. Kaylie, who sent me to see Dr. Gray.  These 2 doctors have given me hope that I haven’t had for a very long time, and they treat me like a person, I believe they really care about what they are doing and want to help people.   I’m also very lucky because I only live a few miles from Duke.  (I know I give Duke a lot of praise but I know, not all the doctors at Duke are as caring and through as these two are.  It was a doctor from Duke who dismissed me as a patient over the phone.)

 

 

Waiting…

On By WendyIn Meniere's Disease2 Comments

I get the Lumbar Puncture today at 3pm.  I’m nervous, a little excited, and getting hungry.

As I said, the procedure is at 3pm, they don’t normally sedate you for this procedure, but just in case they have to they don’t let you eat anything for at least 6 hours before the procedure time.  So I had a pretty big breakfast at 8:50am and I can’t eat anything else until after they are through with me.

I’m really not a good person without food.  I already have a headache, and I’ll get dizzy, my stomach will actually hurt, and I’m just not going to be a pleasant person to be around.  Right now I think I’ll go take a shower and then, I’m going to try to take a nap.  If I’m asleep, I won’t notice I’m hungry, right?

I’ll let you know how it goes.  I probably won’t find out the results until Monday when I see Dr. Kaylie.  It would be such a miracle if this is what is causing the Meniere’s.  I’m very grateful that I’m seeing a doctor who is working on finding a cause for Meniere’s.  It’s so exciting to be a part of this.  I’m trying so hard not to get my hopes up, but it is very hard not to.  After all the suffering that this disease causes, we all need a little hope.  If not this, then there will be something else.  I’ll keep on trying, and I know my doctors will too.

On another note.  I think I’ve figured out another trigger for my GI distress.  Anything with fat in it.  It seems that every time I eat meat I get sick.  The lower the fat in the meat, the less GI distress I have, but still.  I think it’s time to seriously look into becoming a vegetarian.  I’d like to go vegan at some point, but one step at a time.  I really like cheese, and eggs.  I don’t look forward to figuring out how to bake without eggs.  Maybe I’ll just do egg whites for a while, after all the yoke is where all the saturated fat is.  I already buy my eggs from a local farm where the chickens are allowed to roam and aren’t feed all that nasty stuff.  We are very lucky here in Durham, NC because there are a lot of local farmers who are very eco-conscious.  It’s easy to find local organic produce.   You can even tour the farms and on some you can go and work.  (you can literally work for food – haha)

I do have a hard time in the winter with local produce though.  I like winter squash and stuff, but long before spring, I am really missing the summer fruits and vegetables.  We lived in Palm Springs, California for a couple of years and it was just so nice in the winter you could go out and just pick lemons and oranges and limes right off the trees.  The streets were lined with fruit trees and they would be so heavy with fruit, when I would take my afternoon walk I would often just reach up and grab an orange to snack on along the way.  We had a lemon tree in out yard, I loved having fresh lemons to keep the house all fresh smelling and fresh lemonade!  (of course, summers there weren’t any fun at all)

If I could just spend the spring – fall here and the winter out west I think that would be ideal.  I must say, when we were in CA my Meniere’s didn’t give me near as many problems.  But who’s to say I wasn’t just having a good spell anyway?

Off I go on my little adventure for the day….

The Importance of Organ Donation

On By WendyIn Meniere's DiseaseLeave a comment

As you may have noticed I added a Social Vibe Badge to my blog.  If you participate through my blog you will be helping to educate people about organ and tissue donation.

I signed up to be an organ donor years ago.  Why?  That’s simple, there are many people who will not survive if they don’t receive a new organ.  If I die, and any of my organs are healthy enough to help a person survive, I think it would a miraculous thing.  All you have to do in most states is register when you get or renew your driver’s license.  Or you can go to Donate Life.net to find out more about organ donation and how to register in your state.

There is one thing that anyone with Meniere’s should consider donating.  Your Temporal Bone.

The following information comes from the  NIDCD (National Institute on Deafness and other Communication Disorders) National Temporal Bone Hearing and Balance Pathology Research Registry.

“Millions of people have a hearing or balance disorder. The Registry is a non-profit research organization seeking new knowledge to help such individuals. You can help to find new treatments and cures for ear problems by donating your ears (temporal bones) to scientific research.”  – 

“Millions of people are affected by hearing loss and other ear problems.  Research into the causes of these problems is difficult.  That’s because our hearing and balance organs are found deep within the skull, hidden and protected inside the temporal bones.  For researchers trying to learn about ear problems, it is not easy to examine these hidden organs directly in living people.  So, studying donated temporal bones after death is one of the best ways to learn about the causes of ear disorders, and to devise new treatments and cures.”

How had Temporal Bone Donation Helped with Meniere’s Research?

“People with Meniere’s disease suffer from bouts of dizziness, ringing in the ears, and hearing loss that comes and goes.  In studying temporal bones donated by people with Meniere’s disease, researchers found the condition was caused by an increase in the amount of fluid in the inner ear.  This knowledge has led to several medical and surgical approaches to relieve the symptoms of this disease.”

Donation of your temporal bone is easy.  You simply fill out a few forms and the Registry does the rest.  Please take the time to look into the possibility to donating your Temporal Bone.  Here’s the link to The NIDCD National Temporal Bone, Hearing and Balance Pathology Resource Registry, you can find out information about donation there, and you can find out about all the ways donating your Temporal Bone can help with the research of Hearing and Balance Disorders.

I haven’t filled out my paperwork to register to donate my Temporal Bone yet, but I vow to get this done by the end of the week.

Won’t you join me and help researchers find help for people with Hearing and Balance Disorders?  Sign the Registry to donate your Temporal Bone.

Also please consider signing up to donate needed organs when you no longer need them.  Go to Donate Life.net for more information, and read some very inspirational stories.

How I made it a better day.

On By WendyIn Meniere's Disease, Recipe, whole nutrition1 Comment

One of the things I do when I’m having a down day is create.  Sometimes I work on my artwork, other times, like today, I create in the kitchen.

Organic Kale from Durham's Farmer's Market

It all started with a bunch of Kale.  I decided I’d try my hand at Kale Chips.  I’ve heard so much about them but I’ve never tried any.

Simply tear the Kale into small pieces, and arrange them on a cookie sheet covered with parchment paper.  I then sprayed them with olive oil.  (I used one of my favorite products, Pampered Chef’s Spritzer)

Bake them at 350F for about 10 minutes.  You want them crisp, but not brown.   I found if I put a little bit larger pieces around the edges and smaller pieces in the middle of the sheet they get ready about the same timeSprinkle them with your flavoring of choice.  Many people just use salt, but you know I don’t eat much salt, so I used a mixture of Onion Powder, Garlic Powder, and a little of regular Mrs. Dash.  Even Stuart liked these, and he has an aversion to most things green.  : )

Then I decided to start a batch of Raw Sauerkraut.  I got the recipe from my new Whole Life Nutrition Cookbook.

It’s really very easy, and I hope it turns out.  I’ll let you know in a few days.

Here’s the mess I was making while getting the cabbage the way I wanted it.   You have to pound shredded cabbage and make the juice come out to make Sauerkraut.   I started doing this in a bowl, and decided this was just way to hard for me.  So I decided to try putting the plastic blade in my food processor and let it do some pounding for me.  Then I transferred it to my jar.

I used the mortar from my mortar and pestle to pound the cabbage down in the jar.

I was so surprised at how much liquid there was in this cabbage.

It only takes cabbage and a little salt to make sauerkraut.   I didn’t use as much salt as they called for in the recipe, I hope my cabbage ferments well and turns into some wonderful sauerkraut.

Then came time to fix dinner.  I had some chicken left over from cooking some Split Chicken Breasts with about 30 cloves of garlic in the slow cooker this weekend.   All I did there was oil my crock, then I put the breast in skin side down and threw in all the peeled cloves I got out of one big head of garlic.  Put the cooker on low for a little over 6 hours and that’s it.  The chicken just fell off the bone.

I decided to stir fry up some veggies with San-J Gluten Free Asian BBQ sauce.

I threw these plus some onion and garlic in a wok with the left over chicken and the San-J Gluten Free Asian BBQ Sauce.

We had this over brown rice.  I wasn’t very impressed the Asian BBQ Sauce.  It tasted like I had a stir fry with regular BBQ sauce on it.  It was ok, but it wasn’t the Asian flavor I was looking for.  I don’t think I’ll bother with this sauce again.

After a day of not only feeling creative but also productive, I feel much better than I did at the beginning of the day.

I was very lucky today that I was able to work in the kitchen.  When I have these feelings and I can’t get around enough to really work them out, it makes things much harder.  On those days, I try to write, or read.  Usually, even when I’m not able to walk, if I focus on something up close to me I can usually accomplish something.  Those are the days I’m so grateful I have a laptop, and that I love to read.

What do you do to help when you are having a bad day?

 

 

 

Guess where I spent last night.

On By WendyIn Meniere's Disease6 Comments

Ok, can you guess where I spent from 9:10pm to about 1:00am last night?

 

Mr. Pumkin Head

You may have guessed, “A great Halloween Party?”, or possibly “Sound asleep in your comfy bed?”, or maybe even “Having Wild Monkey Love with your hubby?”   Well all of those would be wrong.  Darn it!  The Wile Monkey Love sounded kinda interesting.

 

I was at:

Duke Hospital Emergency Room

At 8:45pm last night, after giving out candy and other treats to over 30 some odd trick-or-treaters, I sat down in my living room and I started feeling funny.  I felt like my heart was going to beat out of my chest.  When I tried to take my pulse my heart was beating so fast I couldn’t count it.  I couldn’t take a deep breath without excruciating pain.  It hurt all up my jaw line on both sides of my face, and the tightness in my chest was nearly unbearable.  So my dear husband rushes me to the emergency room.  I wouldn’t let him call an ambulance, because it cost too much.  Of course, about the time we get there I’m feeling much better.

(I should put in that I have had these episodes before, but this one lasted much longer than the others have.  They don’t happen very often.  My doctor had me wear a heart monitor for a week and, of course, it didn’t happen.  I did have some times when my heart would flutter, but she said most people have that happen, usually they don’t even notice.)

My heart was still a bit fast when they hooked me up to the heart monitor, about 120 beats per minute.  Now I usually have a fairly high heart rate, it’s usually in the high 80’s and into the 90’s, occasionally it’s even been a little over 100 when I’ve been to see the doctor, but only when I was too hot and too nervous.  My blood pressure was a little high too, which is surprising because my blood pressure is usually on the low side.

So they had to take lab work.  This is much easier said than done on me sometimes.  The poor nurses could not find a good vein.  They finally got an IV started in my right inner wrist.  Let me tell you, that is a very painful place to have someone stick you.  I said words I try very hard not to say, especially when someone is only trying to help me.  But, oh my goodness, that did hurt.

Of course, then the world started to spin.  They didn’t like it at all that my husband gave me a Valium right then, instead of waiting for them to order one from their pharmacy and giving it to me themselves.  We explained by the time it came I would be having total vertigo with vomiting and it wouldn’t stop until it ran its course.  They decided they really didn’t want to deal with that too.

All of my blood work came back normal.  My heart was beating a little fast while I was there, but it had a steady rhythm.  After they gave me a bag of fluids, my heart rate came down a little.  Probably, because it was so cold.  So after being poked and prodded once again, the doctors come in and tell me that they found nothing wrong.  All of my blood work came back normal.  Everything was just find.

My diagnosis?  1. Chest pain (Unspecified)  2. Tachycardia (Unspecified)

It appears that some people have an abnormally rapid heart rate (Tachycardia) occasionally for no known reason.  If it last for a long period of time it can be very dangerous, but if you just have it happen now and then, it’s not supposed to be a big deal.  Especially, since I don’t have any of the other risk factors for heart problems.

Then she gave me a prescription for anti-reflux medication.  This makes no sense to me.  If they don’t think I was having heartburn why give me a prescription for a drug to prevent it?  I think most people think doctors have to give them a prescription and so they just hand them out.  I told her, I don’t take anti-heartburn or reflux medications.  I think the  risk from the side effects are simply too high.  If I have a little indigestion I eat something that is alkaline and that takes care of it.

So I left the ER with these instructions:

“Make a follow-up appointment with your regular doctor within 3-5 days.”  Well, I have a Lumbar Puncture scheduled for Wednesday, and I see the Digestive Health Specialist (I’m not sure why.) on Friday.  Oh, and I go to see my ear doctor on Monday.  When is my husband supposed to take another few hours off work to take me to the doctor for a follow-up from this ER visit that showed nothing?

Emmmm.  Can we hear the negativity in my voice?

I try, I try so hard to keep a positive attitude, but sometimes, it just isn’t there.

Today is one of those days.

Warning,  I’m having a very hard day today and the following is a harsh view into how I’m feeling.

Continue reading “Guess where I spent last night.” →

What?

On By WendyIn Meniere's Disease1 Comment

I thought I was feeling better today.  I woke up ready to face the day.  I got up and started making pancakes, after about 4 I realized I hadn’t put an egg in the mix.  Yuck.  I tell you my husband will eat anything.  Burnt?  He loves it.  Ingredients left out?  He doesn’t really notice.  (Sometimes it makes me wonder if I really am a good cook.)  : )

So I started my pancakes over, of course I can’t make just 2 so there are 4 in the refrigerator for later.  Luckily, they are good warmed up.

Then I settled down to read a little email, and look up something I was wondering about on the internet.  I was reading an email from a good friend when all of a sudden the words moved.  Well, here we go again.

The attack right now is really hard for me because I love Halloween.  But now it seems there will be no Jack-O-Lantern carved, no costume, no party.  I’ll be lucky if I get my traditional treat bags ready to give to my trick-or-treaters.  Kids love coming to our house, we usually have the front all decorated, we are in costume, and I give out treat bags full of goodies like spider rings, crayons, Halloween themed coloring pages, glow sticks….  Fun things they can play with and if they have a food allergy no worries.  We also have a tub of candy for them to choose from, but if they can’t have some of it they don’t feel left out.  I remember wondering if they really appreciated the little treat bags, then a little boy came to our house and I gave him his treats, he turned to his mother and screamed, “MOM! I got a bag!”  That made it all worth it.

We’ve had a party at our house the past 2 years, but friends of ours got a new house and they wanted to have the party there this year.  I guess it’s for the best since I’m feeling so out of it.  Unfortunately, it doesn’t look like I’ll be able to even attend this year.  Oh well, we always have next year!

Today on Fleetly Dreaming’s Blog by Nicki, she asks “What CAN you do?”  She challenges us to stop thinking about what we can’t do because of Meniere’s, but think about what it is we still can do.  I decided to take the challenge and list  some of the things that I CAN do, and things I’m grateful for.

  1. I’m grateful that I have such a wonderful doctor who wants to help me live as normal as possible, and who isn’t satisfied with just treating Meniere’s, but he also wants to find the cause.  (Thank you Dr. Kaylie, thanks to you, I CAN have hope.)
  2. I CAN still keep in touch with my friends and family because of  the wonderful world of the internet.
  3. I CAN still hear, something.  That is better than living in complete silence.  (Sometimes it’s much better than others.)
  4. I may not always be able to hear my husband when he enters a room, even if he’s talking to me, but I CAN hear him tell me he loves me.  (He just has to look me straight in the face, and speak loudly.)
  5. I CAN hear much more during my bad episodes since I bought one of those little ear amplifiers that look like a blue tooth.  It’s not perfect, but at least I can hear something.
  6. Some days I CAN hear out of my left ear.  I’m very grateful for those days.  I CAN still hear the birds, I CAN hear water flowing, I CAN hear my friends talking to me on the phone…
  7. Some days I CAN keep my balance.   I’m very grateful for those days.  On those days I CAN cook,  go for a walk, dance with my husband, laugh so hard it hurts, play with my dog and cat, and simply enjoy life.
  8. I CAN still be creative.  Not every day, but some days I CAN work in my studio, I CAN paint, draw, take pictures and even work in my fused glass studio.
  9. On days I can’t work in my studio, I CAN often still work on the computer.   I can write, and even draw thanks to a great friend for giving me Photoshop.
  10. Even on my bad days I CAN usually cuddle with my dog, and cat.  They always seem to know when I’m not feeling well and will pay me much more attention.
  11. On the days when all I can do is throw up, I CAN still be grateful to my wonderful husband that I don’t have to go through this alone.

Thank you to Nicki, for making me remember all the things I CAN still do, and many of the things I’m grateful for.

I did get out and do some things today.  My husband took half a day off so we loaded up the Element with things to go to charity.  We dropped those off by the mission, and then had lunch out.  We picked up things at Petco for Sandy and Max.  Picked up a prescription for me (no not at the same place), and headed home.

I was pretty tired after all that so my husband started dinner.  He warmed up  some mariana sauce and put on a pot of Tinkyada noodles.  While the noodles were cooking I decided we needed more vegetables.

I cut up some zucchini, and some collard greens then sautéed them up with grape seed oil and garlic with a splash of balsamic vinegar at the end to deglaze the pan. I’ve never really eaten collard greens cooked any way but the old Southern way of boiling them with fat back and then seasoning them with vinegar.  Sauteing them was so much better.

I'm so Dizzy, My Head is Spinning…

On By WendyIn Meniere's DiseaseLeave a comment

I couldn’t even lift my head long enough yesterday to make a post.

I have lot’s of things I want to share.  Things I’ve recently cooked.  Certain Sites I’m learning a lot from.  Just lot’s of things.  But I feel so bad.

Yesterday I woke up with my head spinning.  I couldn’t even reach up to the shelf right above my head on my bed to get my pills, I had to call for my husband.  Luckily, he heard me on the first call.  I got the pills in me but I desperately had to go to the bathroom.  That is not fun when the world is spinning.  It’s so awful to need help to use the bathroom.

I couldn’t hear hardly at all yesterday, and I couldn’t stay awake.  I slept until nearly 7pm.   Waking only to use the restroom and eat a little.  I got up for a couple of hours, ate a little something, then I was off to bed again.

This is day 5 of this attack.  I really wish it would go away.  Years ago when this first started I would have a horrible attack one day, zonk out for hours, then I’d feel find.  It’s not like that any more.  I don’t know if it’s because I have bilateral Meniere’s or if things just get this much worse as you get older.

Today was supposed to be my appointment with the Naturopatic and Holistic doctor, but there was just no way I am able to ride in a car.  Especially since her office is about 40 mins away.  Plus, I wouldn’t be able to hear her.

I was reading about adult onset hearing loss today and it’s affect on people.

Here’s how I feel about hearing loss:

Since my fluctuating hearing loss often accompanies an upcoming Vertigo the first feeling I have first is FEAR. “Oh no, Not again.” is my first thought.  Then I take my medication, and sometimes the vertigo doesn’t come.  However, I almost always have disequilibrium even it I don’t have full-blown rotational vertigo.

I also have severe hearing loss in my right ear all the time, and my left ear has moderate to severe with some frequencies.  I can handle one on one conversations most of the time, even when my hearing has really dropped.  A person has to look at me, be close to me, and talk slowly. This is very hard for people to get used to doing with me, because sometimes I can hear pretty good.

I have trouble in crowds., and with too much background noise. I can start having a conversation with someone, but if others join the conversation, I’m lost and generally just get quiet or excuse myself.  If I’m having an attack, it is impossible to hear with the TV on, or in a crowd.

I have to point my good ear at a person so I can hear. That is unless I’m having an attack, then I don’t have a good ear.

I can’t talk on the phone. Even if I’m starting to hear better after an attack, it takes a long time before I can talk on the phone.

I feel left out. If people are talking around me I feel so left out, it hurts and then I get angry.  How can they just ignore me that way?  Unfortunately, they don’t even know what they are doing.

There is so much I wanted to get done.  So much I wanted to do.  How can I work on getting healthy when I can’t even stand up without help?

I feel like such a burden, and I don’t feel like I can be a very good friend.

A good and very bad Sunday.

On By WendyIn Meniere's Disease, whole nutritionLeave a comment

The day started out well.  I still couldn’t hear, but I was feeling ok.  So we decided to take a trip to the NC State Farmer’s Market.  We were on a quest for pumpkins!  We spent nearly an hour and a half picking out the perfect pumpkins for us to decorate, or just use as decoration.  It was much fun.

Since there isn’t any organic produce at this farmer’s market, after we got our pumpkins we decided to make a run to Whole Foods.  Look at the wonderful produce we picked up.  The winter squash came from the farmer’s market, the rest came from Whole Foods.  Most are organic and local, some are just organic, and well, a few are grown conventionally.

On the way home from Whole Foods I started having a vertigo attack.  At the first sign of dizziness I took my medication, but it didn’t really help.  The swaying and bumping in the car was horrible on our 40+ minute drive home.  I will never go that far from home when I’m having Meniere’s trouble.  I should have known better.

Shortly after we got home I started throwing up.  The attack started around 4:30pm and finally stopped around 7:00pm.  Actually this was a fairly short attack, considering I’ve had them last over 8 hours before.   However, it was particularly violent.  I’m so sore and tired today.  I will have to just rest and recover.

What Having Meniere's Means to Me.

On By WendyIn Meniere's Disease4 Comments

Having Meniere’s means:

You can never make definite plans. You never know when a Meniere’s attack my hit so you simply can’t make plans that can’t be broken.  I’m very lucky that most of my friends are very understanding about this.  I was invited to 2 parties today and I had to cancel on both of them.  I am so grateful that my friends will continue to invite me to things, even though they know I may not always be able to come.

Sometimes you lose friends because you aren’t reliable. (or I should say, You find out who your real friends are.) Recently I found out why a friend of mine hadn’t been in touch with me for months, hadn’t replied to my reaching out…nothing.  She feels that it’s a 50/50 chance that I’ll ever keep plans.  I’m simply too much to deal with.

I have to be prepared for the worst. My doctor calls this a disease of Random Punishment.  That means an attack could hit at any time, no matter what I do, no matter where I am.  This means not driving more than 15 minutes away from my home, on good days.  Often, not driving at all.  Having a walker by my bed and downstairs in case an attack comes on, I found this really helps me when I have the disequilibrium, I’m not completely incapacitated, I still feel partially independent.  Always having my medication with me.

Take my daily medications every day. I don’t know if the diuretic really works, but I’m afraid to find out if I would be worse if I didn’t take it.

Stick to a Low Sodium Diet. Again, I don’t know if this actually helps me, but I’m too afraid to find out what would happen if I didn’t do this.  Besides, people eat way too much sodium.  We all really need to be aware of how much sodium is in the foods we eat.

Keep my emergency medications with me at all times, and take them at the FIRST sign of vertigo. I know I mentioned before that I should always keep my medications with me, but I felt this needed repeating because it is so very important.

Living in silence some of the time. Since my Meniere’s is advanced, and in both ears, if I have an attack in my left ear that really diminishes my hearing, I simply can’t hear.  I have a little ear piece that amplifies sound, but often it is distorted due simply to the fact that my hearing loss is different on different frequencies.  This is very hard on me and I’m sure it’s hard on my husband and friends.  One day I can hear fine, the next day I can’t hear them at all, that has to be confusing.  And I get so frustrated.

Feeling left out some of the time. Sometimes I feel left out simply because I can’t hear what people are saying.  Other times it’s because I can’t attend functions I’d like to with my friends because I can’t hear, drive, am too dizzy…

Feeling hurt and angry some of the time. I think part of this is a because I not only have Meniere’s but I also have other chronic conditions.  It’s hard not to get mad at the world sometimes.  It’s also hard not to be hurt when you are all alone and don’t feel like anyone could possibly understand.

Finding out how very lucky I am. Every time I have an attack, I am amazed at how well my husband handles it.  If I had to do this alone I think I would go insane.  I’m also very lucky to have the wonderful friends I do.  They are very understanding, treasure the time we get to spend together, and never forget about me.

A New Me in One Year

On By WendyIn whole nutritionLeave a comment

I’ve been struggling with my health for most of my life. The past 2 years have been especially trying.

Today I had a colonoscopy, and it found nothing unusual. I’m tired of feeling bad and no one being able to tell me why. I’ve had lower GI problems for over 2 months now, and I’ve gained about 25 pounds in these 2 months.

Tonight I emailed a couple of nutritionist in the area asking if they can help me with an elimination diet to see if there is something in my diet that is causing this havoc.

I also walked around the block for the first time in months.

I should mention that I have many other things afflicting me:
Meniere’s Disease
suspected Celiac’s Disease (I am gluten-free and it has helped me immensely.)
Wheat Allergy
Hypothyroidism
Hypoglycemic
Chronic hip pain (I had a torn labrum twice last year. My orthopedist would like to perform surgery to see if he can figure out what is still causing so me so much pain. I’ve had numerous MRI some with dye, and none of them show anything that can explain the amount of pain I’m having. Note: this is a new doctor, not the one who did the 2 surgeries last year. He thinks my hip-joint could be pinching the cartilage, it wouldn’t show up on the MRI because you are in a relaxed position. My muscles and tendons are also too tight, even though I’ve had a lot of PT.)

This blog is going to follow my life over the next year, and my attempt to get healthier.