ABC’s of Disability – the letter A

On By WendyIn Disability, Meniere's Disease1 Comment

Sunshine and Chaos has started a series of post titled the ABC’s of Disability.  I’ve decided to join her in this endeavor.

Her “A” is for Adversity.  Please visit her blog and read (or actually go to a video to see and listen) to an inspiring post about the positives Adversity can bring someone with a disability.

My letter “A” is for Acknowledgement.

It was very hard for me to acknowledge that I have a disability.  Sometimes, it still is.

I don’t mind being different.  I just don’t want to be dependent.  I must acknowledge that sometimes I need to ask for help, and it’s ok.

I need to acknowledge that I can’t do everything I used to.  I need to acknowledge that people will not think less of me because I can’t do things I used to do.  I need to acknowledge that I can do things in different ways.  I can become a stronger person in different ways.  I can learn more about different things.

I need to acknowledge that yes, I have a disability, but that doesn’t take away from who I am.  I am still Wendy.  Even if I don’t feel like it some days.  (Yes, saying this made me cry.)

The first step in being disabled for me is acknowledging that I am disabled.

I have to stop fighting it every step of the way, and finding ways to adapt my life to make it work with my disability not in spite of it.

I Acknowledge that I am Disabled, but I am still Able to be a viable, worthy, and wanted, person.

Reading as a way to cope.

On By WendyIn Life, Meniere's Disease2 Comments

I was looking at my account on Goodreads today and I read 85 books last year!  I was astonished.  Some of them were cookbooks, and health books, and such, but still I did read them.  I read some really good books, and some really bad  books.  But when everything else was kicking me in the butt, and I couldn’t do much of anything, I could read….and I did.

I already have a good start this year… I already have 5 books marked as read in 2011.  2 are Cookbooks, but I swear I read them.  One of them wasn’t that great, but one I actually bought, and it is really good.  One of the books I started in 2010 and finished it on New Year’s Day.  Still, I haven’t been feeling well this week, and I can’t hear very well, so I read.

Most of the books I read are a lot of paranormal, fantasy, mysteryish books.  My favorite authors are Christopher Moore, Neil Gaiman, Carrie Vaughn, Mary Janice Davidson, Stephen King (especially the Dark Tower Series), Kelley Armstrong, Charlaine Harris….

My favorite books are Lamb by Christopher Moore (please don’t let this offend any of my Christian readers.  I don’t think it is meant to.  It is a cute story told by Biff, Jesus’s childhood friend.  It tells the story of all the years that the Bible leaves out while Jesus is growing up.  It is very funny, and I think very thought-provoking.)    To Kill A Mockingbird by Harper Lee (what a brilliant piece of literature, everyone should read.)  Neverwhere, Graveyard, and the SandmanSeries by Neil Gaiman  (I guess Neil Gaiman is just one of my all time favorite authors.  I love all of these books for different reasons.  Neverwhere is a fantastical book.  Graveyard is a piece of juvenile literature that is such a good read. and the Sandman Series is a series of Graphic Novels that morphs the after life with mythology with fantasy….it is just deep and so well illustrated.  And last but not least Stephen King’s Dark Tower Series, this series of books is beyond fantasy.  It is a different world, and yet part of it happens in our world.  It alludes to many of King’s different novels.  A graphic novel series has begun about this series and it is beautifully illustrated.  I don’t usually read graphic novels, but a friend recommended Sandman and I’m so glad I decided to read them.  Then I saw the Dark Tower Graphic Novels and they were just so beautiful, starting before the first book, you know what is going to happen, yet you find yourself wanting to change it.

I also read a lot about health, diet, and anything I can think of that might help me deal with things.  Of course, I also read cook books, because I love to cook, and I’m always experimenting on cooking healthier tastier meals.

What do you read?

Do you have any favorite authors?  Any favorite books?

Reading other Blogs about Meniere’s Disease

On By WendyIn Meniere's Disease2 Comments
Sandy Exhausted from Playing the Wii while waiting for me to stop reading Blogs.

Yesterday and today I have been catching up on some reading…no not book reading…blog reading.  I decided to search for more blogs about Meniere’s Disease and just see what other people are posting about.

Of course, there really aren’t that many blogs about Meniere’s since there aren’t that many of us, and not all of us decide to write about our experiences.

I found that some people like to write a lot about everything they can find out about Meniere’s.  The latest developments, other diseases that might go along with it….  But most of you are just like me.  We write about how this disease is treating us, and I’ve found that it treats people differently.

The treatments seem to be as varied as the patients.

So many people are so excited about this new vestibular device that is being talked about.  I don’t know why, but I’m not yet.  I just think that it’s too early.  I’m so happy that they are experimenting and studying and doing something positive that may help us some day…but I’m just so miserable right now that it just seems so out of reach for me.

I get such hope from reading other people’s experiences.  Reading that a Meniett Device worked for someone, and a Gent injection worked for someone else.  Others get along pretty well with just a low sodium diet and supplements. Then there is the girl who has a cochlear implant and a service dog…I find her so inspirational.

For the past few days I’ve been living bed to couch again.  I can barely hear, and I feel like an attack is about to start at any moment.  I took a bath tonight and thought I was going to barf in the tub.  My husband rushed in with the Valium and Phenergan, and I got calmed down.  He finished giving me my bath and I crawled into bed.  I’m not complaining.  This is just the facts of my life right now.

My husband talked to Dr. Kaylie yesterday and he said he is going to talk to Dr. Gray about getting me back in to check on the patches.  We are supposed to hear from Dr. Gray by Wednesday.  I’m sure something can be done.  After all, I felt so much better immediately after the blood patch.  I know it can be better.

I’m adding to my list of blogs that I read, please take the time to check some of them out.  You may find a new friend out there.  I know I have.

Looking Inside

On By WendyIn Acid Reflex, Medical Tests3 Comments

There is nothing like having a camera stuck down your throat.  Yes I have a sore throat now, and my tummy is not feeling great.  I think they topped the gas off too.  Whew!

Well, this test shows I have Acid Reflux, and a little Gastritis.  (he still wants me to have the CT scan to make sure my bowels aren’t doing something funny where the cameras just don’t reach.  I thought, geez, you put a camera up one way, now you’ve put a camera down the other way, you mean there is still more you can’t see?)

My official paper that he gave me says that my “Z-line is irregular, 37cm from incisors”, and I have “Gastric mucosal abnormality characterized by erythema.  Biopsied.”

Ok, so I looked up with a Z-Line Irregularity means.  It mainly appears to mean that it shows I have acid reflux, but I’ll know more after the biopsy.  And the 37cm from incisors is just how they measure where the Z-Line starts in people (or maybe where the irregularity is).  Mine is 37 cm (or 14.6 inches) from my front teeth.

The other part: “Gastric mucosa abnormality characterized by erythema.”  Simply means I have a little bit of gastritis but it’s not bleeding.  Erythema means that it’s read and inflamed but it turns white when you press on it, so no bleeding.  (hopefully)  It also sounds like I have a bit too much mucus.

He put me on Prevacid.  I’ve been on this medication before, for years actually.  I don’t like being on this for so long, but I’ll do it for now.  He also told me to follow an anti-reflux regimen indefinitely.  That should be fun.

This is the Anti-Reflux Diet:

NO:

  1. Caffeinated Drinks
  2. Carbonated Drinks
  3. Greasy or Fatty Foods
  4. Spicy Foods
  5. Citrus fruits or juices
  6. Tomatoes or tomato bases
  7. Onions
  8. Peppermint
  9. Chocolate
  10. Alcohol
  11. Nicotine.

Ok, so most of these are no big deal for me, but NO TOMATOES?  or even worse NO ONIONS?  If you have read my recipes you will know that I cook with onion and garlic all the time!

What I can eat and drink:

  • water or herbal tea
  • Skim milk, low fat milk, low fat yogurt, low fat or fat free sour cream and cream cheese, and low fat cottage cheese  (WAIT A MINUTE HERE, THEY DON’T MENTION ANY REAL CHEESE AT ALL, NOT EVEN LOW FAT CHEESE…I DON’T THINK THAT’S RIGHT.)
  • Any Plain raw, baked, broiled, or steamed vegetable, Except Onions and Tomatoes.
  • Any Plain Raw, Broiled or baked Fruit (Except Citrus)
  • Any Plain Baked, Broiled, Steamed lean beef, pork, chicken, poultry, or fish.
  • Any low fat bread or Cereal, plain rice, plain pasta (Of Course, I can only have the Gluten-Free Version of these.)
  • Low Fat desserts (less that 3 grams of fat per serving)
  • Any fat free or low fat soup without tomatoes or onions.

This is going to be a challenge.  The biggest challenge will be, No tomatoes (I love a good tomato sauce, I can’t stand them raw, but I love a good sauce.)  No Onions!  Oh my goodness.  What will I do?  I found there is an Indian herb called Asafoetida that when used in cooking gives the flavor of onion and garlic.  I guess I will try that.  Supposedly before it is cooked it smells like stinky feet and poop…that should be interesting.  Oh, and cheese, that will be hard.  But I guess I can use vegan cheese.  I do like the Dayia Cheese.

As I said, a challenge, especially since we have a lot of cheese in the house.  🙂  Hopefully, it will make my tummy feel better, and I can stop running to the bathroom so much.  That will make it all worth it I guess.

I made my psychiatrist cry.

On By WendyIn Life, Meniere's Disease2 Comments

I went to see my psychiatrist today for my normal follow-up for my bi-polar medications.  I’ve been seeing the same guy for about 7 or 8 years (except for the break when we moved to California for 2 years) so he knows me pretty well.  He’s a really great guy and I think a lot of him.  He says I’m one of his favorite patients….I hope he doesn’t say that to everyone….I don’t think so, he always looks genuinely glad to see me.  I’ve worked very hard to get my bi-polar disorder stable, and there have been times when the side effects from the medications just made it so hard.  But we work together, and have found something that works (for now).  Actually, I’ve been pretty stable for about 16 years now.  Every once in a while my meds will need adjusting, but it’s nothing like it was.

When I went in today I wasn’t walking straight and my doctor held my arm so I could feel more steady while walking back to his office.  He knows all about the Meniere’s and he so wishes he could do something to help.  When I sat down, I just let it all pour out.  How the blood patch gave me such hope, then it was just jerked away, how upset I am that the doctors say they can help but keep dragging their feet, how I just don’t want to get up in the morning, how the GI problems have made me gain so much weight I don’t even want to look in the mirror any more…..

He listened and tried to comfort me and when he turned to get his papers to start writing things down, I noticed he had to take off his glasses and wipe his eyes.

It has to be so hard to be a good psychiatrist or therapist, you have to really care, but you need to keep a distance or you will get swallowed up by other people’s sorrows.  I love my psychiatrist, and I’m glad that he cares so much about me.  I just hope at the end of the day he can leave it at the office.

I do still have hope that something can be done.  I told him that too.  He agrees, but it’s hard to see me this way.  He asked if I wanted him to up my dosage to try to help my moods, but I told him that I felt like this depression is well justified.  I only get worried when I feel like this and nothing is really going wrong in my life.  He told me that I’m a smart woman, and I was right, that is the time to worry.  He did add a little bit of Topamax back in my medication to try to help the migraines a little, possibly help with this crazy weight gain, and Topamax is also used to treat both the manic and depressive side of bi-polar disorder.  I was on it exclusively, but it just made me so stupid.  I was taking 400mg per day, now I’ll be taking 25mg twice a day.  Hopefully, I won’t feel too stupid.  I did tell my doctor today that right now I’d rather be stupid that fat.  We got a laugh out of that, and he reminded me that I was pretty miserable being dumb.  : )

Tomorrow I have an endoscope scheduled.  I have to leave my house at 7:00am.  (I am not a morning person!)  I am not looking forward to this test.  This is where they put a scope down your throat and look around at your upper GI track, including your stomach and part of your small intestines.  I have 3 reasons I’m not looking forward to it…well, 4 really.  1. When I’ve been fasting, it is very hard to find a vein.  So when they want to start an IV, it’s going to be very unpleasant.  2. The last time they put a tube down my throat (during an operation for breathing under anesthesia) they chipped a tooth.  I really like my teeth, so that really upset me.  3. I’m going to have a very sore throat afterward.  and 4. When I don’t eat regularly my stomach really starts to hurt.  (of course, that’s one of the things they are trying to figure out, and why they think I may have an ulcer.)

I just want them to find something so I can stop all these tests!  I’m so tired of being poked and prodded.   Especially since they haven’t found anything.  5 months of running to the bathroom and gaining 35 pounds…it would seem like they could figure out what is wrong.

The more I have to see doctors, the more I realize how very little they know.

But at least some of them care enough to try.

Welcome to my new blog.

On By WendyIn Life1 Comment

(I’m still working on the look of this blog, please bare with me.)

I decided to change the name of my blog.  No more 365 Days to a Healthier Me.

When I first started 365 Days, I thought I would be able to measure how much healthier I was getting day-to-day.  Now I realize that just isn’t possible.  I have set backs, and this depresses me so.  I feel like I’m failing at getting healthier.

I used to have a blog on Blogger that was called Picnic with Ants.  My husband really loved that name, and I’ve had a few people find that blog recently and wanted to know why I stopped writing there.  The truth is, I was in one of those states where I just didn’t feel like it was worth it.  Blogging, trying, life in general…so I just stopped.

Now, I’m determined again to get better.  Some how I will get this nasty Meniere’s under control.  I will find out what is going on with my gut.  I will be able to exercise.  I will eat even better.  I will get healthier!

I’m going to try to export all of the posts from 365 Days to a Healthier Me to this blog.

I’m making a lot of changes right now.

I’m also changing my Gluten Free Greenie Blog to a Word Press Blog called Wendy Cooks.  There are many reasons I’m moving to WordPress, but it really comes down to 2.  One, I seem to get much more traffic on my WordPress blog.  Two, if I decide to have a giveaway, I don’t want my readers to leave their email address in their post to enter.  I don’t feel like this is safe.  I don’t want to cause anyone to have unsolicited email because they entered a giveaway on my blog.

Wendy Cooks will be all about my cooking.  I cook everything Gluten-Free and Low Sodium.  To find out more please visit that site.  (I don’t have everything up and running on that site yet, but I’m working on it.)

Thank you all for sticking with me during this move.

I hope you to continue to see you all, and some new faces, at my new home.

Digestive Health

On By WendyIn Medical TestsLeave a comment

My tummy doesn’t feel good.

As I’ve mentioned before I’ve been having gastrointestinal issues for the past few months.  I’ve been thorough a battery of test, including a colonoscopy, but they haven’t found anything.  Now I’m in for even more test.

I have to have Breath Tests done.

The Hydrogen Breath Tests I will be having will be checking for Small Bowel Bacterial Overgrowth, Lactose Intolerance, and Fructose Intolerance.  It will be interesting to see if these test find anything abnormal.  (being fructose intolerant would be pretty difficult, but at least I’d know what the problem is.)

I’m also going to be having a CT- Endoscopy.  They are going to give me this dye and take pictures of my upper GI tract,

Happy New Year! Plans for 2011

On By WendyIn Diet, Gluten-Free, Life, Meniere's DiseaseLeave a comment

There are many things I want to accomplish during this coming year.

Of course, I want to get the Meniere’s under control.

I want to figure out what is going on with my gut and get that fixed, including taking off this weight I’ve gained.

I want to exercise more.  I love to work out in a pool.  I just ordered some of the equipment that we used when I had physical therapy in a pool so I could do the exercises on my own.  (a flotation belt so I can exercise in the deep end without sinking, webbed gloves for resistance, and weights for my ankles to help with aqua walking and toning.)

I also ordered a heart rate monitor so I can keep up with that when I’m working out other ways.  (my heart tends to beat a little too fast too soon, so I have to keep an eye on that.)

Stuart and I have decided that we want to start living more in line with our beliefs.  Stop buying so much stuff we don’t need.  Start buying things that are used instead of new.  Stop creating so much trash.  Start buying closer to home.

We are going to try very hard to not buy anything new in 2011.  I’m looking at it as a smaller goal, I plan to say – Nothing new in January, then if I can do that, then Nothing new for the next 2 months, and build up.  I’m afraid if I say, Nothing new for a whole year, I’m just dooming myself to failure.  (of course, this doesn’t include food, necessities like soap and stuff, and we’ve agreed if we need underwear it will be bought new.)  It also doesn’t include services we may need, or the raw materials I need for my art.  I am trying to create recycled art, but there are still some things you just have to buy.  (I’m hoping to find some of this on Craig’s list, or Free Cycle.)

I hate to admit that we did go on a spending spree at the end of the year in anticipation of this upcoming year.  I’ve been wanting a new vacuum cleaner for so long, and I wasn’t going to wait another year for it!

Buying nothing new is going to be hard.  But I think we can make a good go of it.

I also want to eat healthier.  I need to get my cholesterol down (well my triglycerides, the rest is fine).

As most of you know I’ve taken on the challenge to make at least one meal a week from S.O.L.E. (Sustainable, Organic, Local, Ethical) ingredients.  This has been a challenge during the winter months, there just isn’t that much local produce at this time of year.  But I’m enjoying the challenge.

Next, I’m taking on a challenge of going Vegan or at least Vegetarian for 21 days starting January 3rd.  I’ll take it one day at a time, but cutting out a substantial amount of saturated fat from my diet should lower my triglycerides.

I want to spend more time with my friends, and I want to make more friends who have the same interests I do.  It’s hard for me sometimes to go to parties and see how much is being wasted, and so many people don’t bother to recycle.  We are the only people in our group of friends who have a composter.  I also think it’s important to use cleaning products that are safe to the environment.  I feel like many of our friends do some things, but when it’s not convenient they don’t try.  I feel like we’ve fallen into that trap sometimes too.  For example, getting take-out.  What could be more wasteful?  At least when we eat at a restaurant they reuse the dishes and utensils.

We would rather spend our money on visiting friends and family.  Or giving to the charities we believe in.  We are tired of being wasteful.

In a nutshell what we have planned for the New Year is:

  • Get Healthier.
  • Stop being so wasteful.
  • Don’t buy anything new.
  • Make more time for our friends and family.

Are you making any resolutions or plans for the New Year?  I’d love to hear about them.

Happy New Year to one and all!

Hanging in There.

On By WendyIn Life, Meniere's Disease5 Comments

So night before last I couldn’t sleep.  When I went back to bed at a little after 5am I realized that I wasn’t sleeping because I was hurting, I could not get comfortable.  My hip was hurting more than usual, my neck was hurting, I had a head ache….  I didn’t want to take a pain pill because sometimes they can make you a little dizzy, and we know I didn’t need that!  Finally, I decided to take half of a pain pill.  That did the trick.  I was able to go to sleep about 6am.

I slept from 6am until about 2:30pm.  Not bad.  I felt fine when I first woke up, until I tried to stand up and then the world just decided to kind of tilt a little.  I grabbed the wall and held on to the sink so I could get to the toilet.  Then my husband came in the bedroom and I had him help me back to bed and start the meds a flowing.  Again we over dosed me on Valium, and Phenergan.  I had diarrhea so we just kept putting in the suppositories.  I felt like I was going to start spewing any minute but we kept it down.

It was so sweet, my husband sat by me the whole time.  I do a little chant I learned in yoga to help calm me down, and he just chanted along with me.  Then he read to me for a little while, but I was having such a hard time hearing him, it started to make me feel bad.  So we chanted some more.  Finally, I felt like I could eat.  He brought me food up in bed, and I started feeling much better.  I actually made it to the couch around 6pm.

Today, I’ve been feeling a bit better.  I had one time today where I felt like I really needed to just take it very easy.  I took a Valium and Phenergan tablet and it calmed down.  I don’t feel great.  I still can’t hear, and the tinnitus is crazy, but at least I’m not spinning.

I must say though, that I am afraid I will start spinning at any moment.  I told my husband that I feel like I’m living in Hell.  Not just the actual time of the horrible vertigo, but the constantly feeling like it could happen any moment.  I realize there are a lot of things that are worse than this, but it just doesn’t make this any less horrible.

There are many things that I am grateful for, like:

Our Little Happy Family
  1. Having a wonderful husband who loves me and still thinks I’m sexy even through all of this.  (and my weight gain.)
  2. Days where I can get out of bed and off the couch and actually do something.
  3. Friends who have stuck by me through this.
  4. My dog, who still acts like there is nothing wrong with her, even though she has cancer.  She is really such a joy in my life.  She makes me laugh at least once a day, and makes me smile much more.
  5. My dog and cat will cuddling with me when I’m not feeling well, and even when I am if I want.
  6. That I can still read.  Watching TV is hard, especially when the closed captioning doesn’t work half the time, but I can still read.  Since Dec. 23rd, I’ve read 3 books, and I’m almost finished with number 4.
  7. Color.  I love color.  My favorite color is Yellow.  It just makes me happy.  The color of sun flowers, of buttercups, of the sun in a child’s finger painting…..I just love being able to enjoy color.
  8. This blog, the people who read it, and the people who have become my friend because of it.
  9. Hope.  I know it’s hard sometimes, but I always seem to be able to grab a hold of some hope, and pull myself out of the deepest despair.
  10. My doctors, without whom, I probably wouldn’t have much hope.

There are many more things I’m grateful for, but I just felt like I needed to acknowledge a few.

Tomorrow:  Plans for a New Year!

I can’t Sleep.

On By WendyIn Life, Meniere's Disease2 Comments

It’s almost 5am and I’m not asleep yet.

Yes, I did take something.  Unfortunately, it did not work.

All of us who have Meniere’s know that sleep deprivation is not a good thing.  I’ve already been having signs that a big attack is probably on its way, and now I can’t sleep.  Dang it.

I was in bed for a while, and I thought I was nearly asleep once, but then I got the hiccups.  I get the hiccups a lot.  After, they finally subsided, I couldn’t fall asleep.  So finally, I just got up.

I guess I will go and try again.  If I can fall asleep, I hope I just sleep the day away tomorrow.  : )   Maybe I’ll feel better when I wake up.  *fingers crossed here*

I will go and try again.