Month: February 2011

No New Punctures for Now

On By WendyIn Medical Tests, Meniere's Disease3 Comments
image found at http://coffee-shop-dharma.blogspot.com

I just got off the phone with Dr. Gray.  I told her how much better I’m feeling, and she said she didn’t want to even test my pressure if I’m feeling this good.  She doesn’t want to mess around with things.

She is very hopeful that I will continue to feel better.  (me too!)

I am wondering if the reason I’m feeling so much better is because I stopped taking Topamax.  It can lower your pressure, so it could have been causing my pressure to be too low.  Or it could also be because I started taking B12 shots.  Tomorrow will be week 3, so I should really be starting to feel a difference there.  I have much more energy, and I just feel better.  Perhaps a combination of the two has really made the difference.  I don’t know, but I’m just grateful to be feeling so very much better!

What a difference from just a couple of months ago, huh?

Oh, I am talking on the phone again!  I had 3 conversations on the phone today and I was able to hear the people, and I didn’t get nauseous.  (often when I tried to talk on the phone before, even when I could hear, it made me so dizzy I would get sick to my stomach)

What a nice day!

On By WendyIn Life, Meniere's Disease5 Comments

I had such a nice day today, I just had to share it.

My hearing is better.  No symptoms at all really!  Yay!

Today we went to the co-op first and stocked up on groceries for the week.  We came home and made burgers.  We cooked them on the grill, and then we ate outside.  It was about 80F!  So cool.

Then we went to look at cars.  For ME!  Yes, we are looking at buying me a car.  For years we’ve been a one car family, but one of the biggest reasons I don’t drive is because I’m afraid that I will get out and have an attack and won’t be able to get home.  I would just feel so much better I knew I could call Stuart to come get me if something happens and I feel like I can’t drive.

This is the car I test drove today:

2004 Volkswagen Beetle

How cool is that?  We drove it with the top off, and it was so much fun!

Not sure we’ll get this car, but it sure was fun test driving it.

Another nice thing about today…my husband has been flirting with me all day.  It’s so nice.  He so often has to be my caregiver, it’s so very nice for us a day where we are just a married couple, in love, and having fun together.

I’ve been feeling great lately.  I still have my lumbar puncture scheduled for Wednesday, I think I’ll try to do as much as I can from now until then.  That way if over doing it is what caused my last set back, it should do it again.

Tomorrow, I have another one of those Breath Tests.  On Friday when I could finally eat I had such a horrible headache I was forced to bed for hours.  I hope tomorrow’s experience is better.

Today was such a nice day.

Breath Tests

On By WendyIn Medical Tests2 Comments

Because of the gastrointestinal troubles I’ve been having I have to take a series of three Breath Tests.  The first one will test for abnormal bacteria growth in the intestines, the second test for lactose intolerance, and the third for fructose intolerance.  If I have the first they can treat it with an antibiotic, the other two will require a life time diet change.

To start things off I had to go on a low carb/starch diet yesterday.   I can’t eat anything for 12 hours before the test, and then the test last for 3 hours during which time I can’t eat of drink anything.  I’m doing the first test today.  I have had to give a breath sample, then drink a solution, then I have to give breath samples every 20 minutes.  I can finally eat around 1:30pm today.

I will perform the second test on the 28th, and the final one on March 3rd.  So tomorrow I have a normal day, then the low carb day again on the 27th, and the then the test on the 28th….and so on.   During second and third test I only have to collect my breath every hour for 3 hours instead of every 20 minutes.

It will be interesting to see what these tests find.  I’m kind of hoping the first one will be positive and they can just treat me with a pill, and I’ll be fine.  I’m really tired of all the poking and prodding and not finding anything.  I don’t think I have lactose intolerance, but I’ll deal with it if I do.  No matter how much I love cheese!  The fructose intolerance would also be pretty hard.  Can you imagine never being able to eat fruit again?  I don’t eat a lot of processed foods, but just think about how many things have fructose in them.  Again, I would deal with it.  Anything to get my gut working right again.

Right now I’m so very hungry, and I’m tired of blowing in this blue bag every 20 minutes. (The blue bag is attached to a needle that you insert in a test tube and you catch your breath in it.  So at the end of this test I will have 10 test tubes filled with my hot air.)  I now have a very bad headache, and I’m a bit dizzy.  I know it’s because I’m hungry.  When I went to the hospital today to pick up the tests and get instructions, I thought I was going to do the first one there, and then I could leave and eat.  I had no idea that each of these tests last for 3 hours.  One more thing, I have asthma, not bad, but all this blowing, is making it hard to breathe.

OK enough fussing, you can tell I’m hungry, I get a bit bitchy when I want food! : )

I have to say that the people at the hospital were so very nice.  Most of my doctors are at Duke and I’m used to it there, this test was through Rex Hospital in Raleigh.  The intake person was so very nice.  When I explained that I’m hearing impaired and needed her to look at me when she spoke so I could hear her, she really listened!  Most people, hear me, but then they don’t think about it and will talk to me while they are looking at their computer, or they speak really low.  I have to say, most people just have no idea what it’s like to deal with a person who is hearing impaired.  This lady even wrote in red ink on my papers that I was hearing impaired and needed for the other people who dealt with me to look at me when talking and speak clearly.  I’ve never felt so at ease.  Of course, Stuart was with me, so I have my own “interpreter”, but it is just so much easier when I don’t have to look at him after someone speaks to me and wait for him to tell me what they said.  He is wonderful about it, although some people seem to get confused or irritated that I don’t answer them immediately and need to look at my husband to tell me what they said.  I just don’t understand some people.  But today I was very pleasantly surprised at how much I was treated with respect, and courtesy about my condition.   It’s a shame I have to say surprised, but I simply haven’t found many places where the people are just so nice and go out of their way to make sure I can hear them and understand.

I will be letting the hospital know how impressed I was with my visit, especially with Barbara Kiplinger, the intake employee who took all my initial information.

I know she won’t see this, but Thanks Barbara!

A Different Thursday

On By WendyIn Life, Meniere's Disease3 Comments

Today I don’t have anything particular to write about.

Health wise things are about the same.  I’m feeling a bit better.  Hearing has improved, but still not up to its normal standards, and I’m still nursing a headache.  However, the weather has been crazy here.  Warm one moment, cold the next, and now it’s raining.  So all in all things are pretty good there right now.  Just waiting on the next visit to see Dr. Gray on the 2nd.

Every year about this time our master bathroom gets invaded with lady bugs.  I’m not sure how they get in there, the window doesn’t open, I think they just came with the house.  : )

Lady Bugs in my Bathroom

Yesterday I took a picture of myself.  Don’t know why, I just felt kind of pretty.

That's me!

Today I had a first: I was served with a Subpoena.   Of course I’ve seen people get served on TV many times, but I got mine in the mail.  How weird is that?  It is such a strange feeling to see on a piece of paper that I am COMMANDED to appear and testify in court the week of March 28th.  I have to testify against Paul Seelig, former owner of Great Specialty Products.  He was selling bread as Gluten-Free bread and it wasn’t.  I was one of the people who bought some and got sick.  It’s a much longer story than this, and I may tell more later, but for now you can read the initial news report about it here: http://www.wral.com/news/local/story/6949028/ if you would like.

I won’t bore you with the details of how involved I got in this case.  But I feel so betrayed, and hurt.  I believed this man, and he could have killed people.  I got sick and convinced myself that I must have gotten gluten somewhere else.  I feel like I am such a bad judge of character now.

I’m Very Nice, and a Kind Hearted Blogger.

On By WendyIn Life2 Comments

Today I came across two blogs that just made me happy.

I’ve always believed in being nice, not only to people I know but also to strangers.  I love holding doors for people, sharing a smile, telling a stranger how good they look today….  Well, today I came across a blog by Melissa Morris and she feels the same way.  She has made it a mission to encourage other people to be nice.  This just makes me happy.  Her blog is called Operation NICE.  She even gives assignments for people to do to be nice.  For example, this week’s extreme niceness challenge is to smile at 10 strangers.  This is an easy one for me because I try to smile at everyone.

Here’s a little story about me smiling to a stranger.   Yesterday, when we were at the mall I smiled and waved at a little girl and then smiled at her father, he gave me a big smile and said “Thank You.”  I couldn’t figure out why he thanked me, but it was so sweet.  It just made my day.

I’ve decided to follow her and try to fulfill the assignments she suggests, it always makes me feel better to be nice to others.  It empowers me, and makes me feel much more “normal”.  Do you enjoy being nice?  Is it important to you to do Random Acts of Kindness?  Does it make you feel better?  If so, maybe you should join me in being a Very Nice Person.  : )

The second thing I found today touched me because I was reading on another blog that I follow recently how she is being harassed by someone saying some not so kind things.  This is something that really scares me about blogging.  I hope I have enough self-confidence to not let things get to me, but I know from past experience when I’ve gotten a negative comment that it hurts.  I simply can’t help but take it personally.

That’s why the pledge to be a Kind Hearted Blogger Campaign created by JoAnne at Em Jay and Me made me happy.

AS A KIND-HEARTED BLOGGER I PLEDGE TO:
  • create, inspire, and admire rather than compete with fellow bloggers
  • be understanding of each other– in the blogging community, as well as in the world
  • stay away from internet/blogging bullying
  • speak my opinion freely, while still being mindful of other’s feelings– be tactful.
  • make an effort–no matter how big or small the gesture, to spread kindness or joy to others
  • acknowledge that I will make mistakes, (I am only human) but remember to learn from them
  • know that at times I will post about the negative stuff in life, and maybe even some complaining (I am only human) but I will always follow-up with something happy/positive too.
  • believe that this world is a good place, filled with good people.

I hope these also made you happy.

You ask how am I feeling?  My hearing is a tiny bit better today, I had a sudden horrible headache today that took me to my knees, but it didn’t last too long after I took something.  I’m very tired today, but feel better than I did yesterday.  Dr. Gray is trying to get me in this week to test my pressure.  Haven’t heard back from her yet to see if she found an opening.  She really wanted to make the appointment long enough to so she could patch the last leak if she needs to.  I’ll let you know what happens.

Thanks for tuning in!

 

Love Makes It So Much Easier.

On By WendyIn Disability, Life, Meniere's Disease1 Comment

I’d like to dedicate this post to everyone who loves me, or who simply shares their love with me.

I often mention how much my husband does for me.  He not only takes care of my physically when I can’t, he does housework, and he also holds down a more than full time job.  He also puts up with me when I am having a very short-tempered day because I’m not feeling well.  He does all of this because he loves me.  I can’t imagine how I would get through all of my trials without him.  (I’m really glad I don’t have to.)  Thank you husband, for being there when I’m my sickest, for listening to me when I just need to scream, for encouraging me, for being strong for me when I don’t feel very strong myself and for still flirting with me and making me feel like I’m sexy.  Your love is very important to me.  I hope you know how much I love you.

To my dear friends who still accept me as I have changed with this disease.  I know I’m not quite the same friend you originally met, but I sure am glad you stuck by me.  I love it when you share your life with me, and tell me what is going on with you and just don’t even pay attention to my illness.  Those are special days to me.  However, I am also grateful for the days you let me cry on your shoulder and tell you  how hard things are, it’s nice to be able to talk about it and know you aren’t being judged.  You have been a great friend.  Thank you for loving me.  I love you too.

To my wonderful blogging friends.  You have listened to me possibly more than anyone.  You have heard mostly my down times, and you are still here.  I love you for that.  You encourage me, and have helped me to come to terms with my illness.  You may not know me personally, but you have shared your love with me, you have reached out over many miles and given me hope, knowledge and friendship.  I thank you, and love each of you.

I would be remiss in this post if I didn’t mention the love of my pets.  Our darling dog Sandy, and loving cat Max.  They are always looking out for me.  They know when I don’t feel good and always try to make it better.  I often feel like I’m a pet pillow (at least I’m not a Pillow Pet!), but they just want to be as close to me as they can.  They are always there for me.   They warm my heart, I love them so and can’t imagine my life without them.

I’m a very lucky person to have so much love surrounding me.  It really makes living with a chronic illness easier.  At one point I thought it would be easier if I was alone, if no one cared.  Then I could just drift away and it wouldn’t matter.  I was in a deep depression and felt my life was over.  I couldn’t see how I could possibly be of any use to the world being in the condition I was in.  I’m very grateful I had some wonderful people who loved me and made me realize I had something to live for.

I love you.

This post is part of Patients For A Moment blog carnival, hosted this time by Chronic Babe.

Here we go again.

On By WendyIn Meniere's Disease1 Comment

Still can’t hear.  It’s so much worse now that the Meniere’s is in both of my ears.  Since I can’t ever hear out of my right ear when my left ear is having problems I am at a major disadvantage.  I’m trying very hard not go get frustrated, but I get so tired of saying, “What?” and “I’m sorry, but I can’t hear you.”  I have to admit I often let my frustrations out on my husband, he will talk to me and I just yell at him that I can’t hear him.  It’s not his fault, just two days ago I could hear him.  I just get so frustrated.  I’m trying to get better.

We went to the mall today to pick up some dog food from a non-profit store that we like to give business.  This mall is a good ways away from our house, but I think it’s worth.  Normally.  When we got there we decided to walk around for a while and get something to drink, do some window shopping.  I have a huge weakness for shoes and just had to look.  We are trying not to buy anything new right now, so I was just looking, however I was being mighty tempted.  I tried on a pair of shoes, really I wasn’t going to buy them, usually when I try on a pair I change my mind….and I did.  However, when I went to put the shoes back I had one of those “Oh shit, the world just moved much more than I did.” moments.  I immediately took some Valium and Phenergan and decided it was time to leave.  I did start to feel better on the way home but was in no way stable.

After we got home I hit the couch, and I’m still here.  I went to the bathroom and things went a little merry go roundish again.  So, I took some more meds and just had a Phenergan suppository too.  I’ve also had a horrible headache today.  I took a Maxalt (a migraine abortive) a little while ago, it eased it but didn’t take it away.  I’m afraid to take a pain pill, I’m afraid I’ll get dizzy since I’ve already taken 2 Valium.

I thought about taking the Diamox, the medication Dr. Gray gave me if my pressure went too high, but last time I took that it made things worse and I had horrible side effects from it.  I don’t want that to happen again.

Thank you all for the encouragement.  I do want to let you all know, I’m really not that stressed about this.  I’m not afraid of an attack coming on.  If it does it does.  I am afraid I’ve gone through all of this for nothing.  I am afraid I will have to suffer through the attacks and feeling awful for months before they will do anything else.  I wonder sometimes if I shouldn’t have just gone ahead and gotten the surgery on my left ear like I did my right.  At least it helped the vertigo.  But then I think.  How else would they learn if not for people like me, taking the chance to risk a different type of treatment?  It may not work for me, but it has worked for others.  And who knows it is still too early to tell, it may work for me too, it may just take a bit more tweaking.

On top of this I think my kidney stone my be moving.  My left side is hurting, just where the doctor told me it would, and I keep feeling like I’m going to explode if I don’t pee, but when I go in there I just get a few drops.  Hopefully, it will just settle back down and won’t decide to come out right now.  I really don’t need to deal with that right now.

Well, I’m really tired now and think I will rest some more.  Perhaps even just go to sleep.

I mainly just wanted to vent a little, and let everyone know I’m OK.   Thank you all for all the well wishes.

(My thinking is a little muddled right now, so I apologize if this post isn’t up to par.  Please forgive grammatical and spelling errors, or rambling.

What?

On By WendyIn Meniere's Disease3 Comments
photo courtesy of funnycorner.net

Yesterday started off being a very good day.  I woke up looked in the mirror and thought, “Hmmm, my face looks a little thinner.  Nah, must be the light.”  So I stepped on the scales, and I have lost some weight!  I lost 5 pounds!  I was so tickled.

Then I had much to do, a friend was coming over to make us dinner so I wanted to clean up the kitchen a little and run to the grocery store for a few things.  Yes, I planned to drive to the store myself.

I did actually DRIVE to the store, but Stuart did go with me.  He wanted to get out of the house too.  I came home, cleaned the kitchen, and even did a little out in the yard.  Our friend came over and made us dinner.  It was very nice.

I kept noticing that I really couldn’t hear our friend very well, but I often have trouble hearing him so I wasn’t worried.  He and Stuart were talking and I decided to just concentrate on something else because I couldn’t keep up with 2 people talking, it was very hard, but I wasn’t upset or anything.  I was glad they were having a nice discussion.

We decided we’d watch a movie.  We picked one that had subtitles and I was fine with reading the movie.  I was getting tired, but not overly so.  I was using my amplifier in my right ear (the ear I can’t hear anything really out of without the amplifier).  After the movie I took off the amplifier and realized my hearing in my left ear had dropped significantly.

We went to bed, I thought perhaps after a good nights sleep things would be back to normal.  Unfortunately, when I woke up this morning, my hearing is still down.  I don’t feel bad.  I’m not dizzy.  I do have a slight headache…still, but I often have headaches this time of year because of the weather changes.

I won’t lie, I’m scared.

I looked back at my posts after the last spinal fluid patches and the first symptoms to come back were, headaches and hearing loss.  Within 3 days after my hearing dropped last time I had a vertigo attack.

We’ll just wait and see….and call Dr. Gray on Monday and see if I can get in to get my pressure checked.  I think it would be better to know what we are dealing with on that front.

The First Signs of Spring

On By WendyIn Gluten-Free, Meniere's Disease2 Comments

I went to the library today and there were daffodils blooming in front of the building.  Oh, I love the first signs of spring.  On Monday it was so nice I sat outside for a while and just soaked up the sun.  It was so beautiful.  I know we will still have some cold days, but the warm days are peaking through, and that is making me happy.  Time to start planning our garden!

I’m sorry I haven’t posted in so long.  My stupid headache lasted for days.  I literally slept for nearly 2 straight days trying to get rid of it.  I’d wake up and would still be in so much pain, I’d just take more meds and go back to sleep.  It has been much better, but I still feel like I have a nagging headache, just not one that will knock me on my butt!

On Monday, I had a good day.  I actually cleaned the kitchen, and vacuumed the kitchen/breakfast nook and living room.  It looks so much better.  Our new vacuum is so powerful, it needs a different attachment on it for the carpet, it is so powerful the suction makes it hard to get it to move along the carpet.  But, boy you really should have seen how much dirt it picked up.  I never would have guessed there was that much in there.  (Or maybe you shouldn’t see it…now should I be ashamed?  Or delighted that I was actually able to finally get it up?  I think I’ll be delighted!)  And today I’m working on the laundry.  I really hate doing laundry, but I’m so happy I am just able to do it.

I even made candy on Monday!  I was going to take a picture, but I put it in the refrigerator, and it turned a funny color, so I didn’t think it was photo worthy.  However, my husband was thrilled.  I made mint chocolate Lego Blocks for him…he is a huge Lego fan, and loves mint chocolate…no silly hearts for him on Valentine’s Day.  : )

We even made it out to dinner.  I had planned to cook, but we hadn’t made it to the grocery store, so out to dinner it was.  We got there early, so no waiting.  Then we spent the evening grocery shopping.  How romantic, right?  We did come home and have a nice quiet evening together and it was very nice.

So, how am I doing physically?

Better.  But the headaches aren’t good.  However, I think they are mostly hormonal.  I’ve been having a very light period, but it’s the first one I’ve had in months.  Also, I’m trying to go off of birth control pills.  (no I’m not trying to get pregnant, I just want my hormones to be my hormones and see where I’m at with all of that.)

I still start feeling worse in the evenings.  Dr. Gray is talking about testing my pressure to see where I’m at, I think that’s probably a good idea.

I did see my regular MD this past week.  (did I mention that before?  I should probably re-read my last post, I was in so much pain when I wrote it I really don’t remember much about it.)  Well, if I haven’t mentioned it we found out that I have a B-12 deficiency again.  I was getting shots last year, then I went to oral supplements.  It looks like I don’t absorb the oral supplements or B-12 in my diet very well.   A lot of people with celiac disease don’t.  So some of my icky feeling symptoms could very easily be caused by that.  My thyroid was also a bit low, so there we go with more of the same symptoms.  Fatigue, dizziness, GI symptoms…  It’s hard to know what is causing what.

My nutritionist started me on a diet to help regulate my blood sugar.  It is mainly just meat and veggies with very little fruit.  I am to make sure I have protein and fat every 2-3 hours.  I’m also to drink lots of broth.  I’ve been drinking the broth for a few weeks now, and it really seems to be helping my digestion.  I’ve actually had come normal bathroom habits.  I still have some diarrhea, but it is less that it was, anything that isn’t diarrhea is less that it was.  (I know icky subject.)  If I could just start losing some of this weight I would be a very happy girl.

The last couple of nights I’ve had a hard time sleeping.  I’ve read 3 books this week.  One was pretty short, but still, that is just insane considering I don’t read in the day time.  You can really tell when I have insomnia, I go through books like crazy!  I read Counterfeit Magic by Kelly Armstong, Three Bedrooms, One Corpse by Charlaine Harris and Ghost Town by Rachel Caine.  All of these books are parts of series.  Sometimes it drives me crazy that I get all caught up in a series, other times I can’t wait for the next one to come out.  I was disappointed in the first book.  The second book is a mystery, this poor girl one of those people who always seem to have people murdered around her, but it was cute.  The last book, was really good.  I was impressed that this author was able to come up with such a unique story on book 9 of this series, I felt like it was getting a bit same old same old with the last book, but this one really switched it up.

Well, that’s all for today.  I hope you are all getting your first days of spring and are enjoying them as much as I am!

Oh My Aching Head!

On By WendyIn Meniere's Disease3 Comments
Oh My Aching Head!

I got my first headache since the patches yesterday.  It was a pretty bad one, but when I took some meds and a short nap, it went away.

Last night when I was trying to go to sleep I was all stuffy.  I think I’m having allergies.  I woke up this morning around 8am with a horrible headache, I went back to sleep for a little while (read 2 hours on and off here) and when I decided I would just get up I swear my head hurt even worse.

Today it’s on the left side of my head.  I feel like there has been a rod inserted in my left eye and it’s coming out the lower part of the back of my skull, and it’s rotating.  At first I didn’t take anything, I thought I’d eat something and drink a bunch of water first to see if that would help. Nope.  Then I took a Topamax, to see if I have high pressure.  Nothing.  Then I took a Maxalt (migraine reliever). Nada.  Finally, I took a Hydrocodone. I can’t really open my left eye now, and I’m sick to my stomach.  I just took a Phenergan to see if it will help with the nausea.

So what is causing this horrible headache?  Allergies?  Hormones? (I’m on my period.) or is my pressure going too high?

I just really wish it would go away!  I really need to do some house work, I can’t tell you the last time my house was vacuumed….maybe Christmas?  No wonder my allergies are bad.  : )  I got a new vacuum for Christmas, anyone want to come try it out?