Tag: Meniere’s Disease

Candle Lighter Award

On By WendyIn Chronic Illness7 Comments

Weeks ago Phylor honored me with the Candle Lighter Award.  I am honored Phylor chose me as a recipient of this award.  To say that I am a candle in her life who helps to light the way…this brings tears to my eyes.  How could anyone wish to be more?  I hope I can live up to this honor and light a candle in the darkness to help light a few paths along the way.

Kate Kresse, of Belive Anyway, originated the Candle Lighter Award to: . . . “light a candle in the darkness that envelopes us all at times. I want to lighten loads and light the way. I gravitate towards positive people and positive blogs. I want to start a blog award that reflects my love for the positive in the blogosphere.”

Kate asks little of the winner – to link back to her comments when the blog has been posted, and to, of course, if you choose, to pass the award along to anyone you feel deserves it. You can award it as many times as you like, all that Kate asks is that you link your post back to her site.

I pass this award on for the same reasons Kate started the award.  She stated, “I think people that are going through the efforts to be positive and make the world better through their efforts and blogs deserve to be recognized. I am always looking for encouragement and ‘light’.”

I have so many people who have been a light for me.  I wish I could honor each one with this award, but there are simply too many to list, at this time I do not have the energy to properly acknowledge you all.   I’ve decided to limit it to 2 recipients.  Two very special women whom I feel do not get the recognition they deserve.  Two women who have been through torment and trials and come out with a positive can-do attitude that lights the way for many others.

The First person I’d like to recognize is Fiona of The Agoraphobic Blog.  

Fiona had a horrific experience that brought about severe panic disorder with agoraphobia (according to Pub Med Health Panic disorder with agoraphobia is an anxiety disorder in which there are repeated attacks of intense fear and anxiety, and a fear of being in places where escape might be difficult, or where help might not be available.)

Fiona, is an amazing young woman.  She is working so hard to overcome these intense fears.  I feel such inspiration when I read her posts, hearing how she made it out and about one day.  Even on her bad days, with severe migraines or a panic attack, you can still hear her positive attitude and hope.

Said said in one post, “So yes, I have agoraphobia and Panic Disorder, but it definitely does not define who I am, I have never become depressed about it, I have got frustrated a few many times and had a huge cry, got it out of my system, and then moved on again.  This is my life, I am happy with it, it sure could be a hell of a lot easier, but who has the perfect life anyway? everyone’s life is hard at some point, mine just happens to be hard to do simple things, but I AM OKAY WITH THAT!”

In another post she said something that really stuck with me.”bad days are ALWAYS followed by good ones and I always remember that and keep it in mind.”

Thank you Fiona, for not only lighting the path for others with panic disorder and agoraphobia, but for anyone who needs inspiration!

The second person I’d like to pass this award to is Kelly from Fly with Hope.

Kelly states “I became disabled in October 2005 by my Chronic Migraines and Chronic Daily Headache (more specifically New Persistent Daily Headache). I have had frequent headaches and Fibromyalgia since I was a teenager. In addition to Migraines, headaches and Fibromylagia, I have Meniere’s disease, Irritable Bowel Syndrome, Obsessive Compulsive Disorder, Anxiety, Tachycardia and Food & Environmental Allergies.”  To understand some of the battles she goes through read one of her most recent posts…Joy in Prison.

On her blog she shares her ” journey of learning how to manage chronic illness and hold onto Hope.”  Kelly is very involved in advocating for herself and others who have chronic illnesses.  She reaches out to people and shares this profound Hope, and deep spirituality that she has.

Her light shines through her, with every word that she writes.  She has personally been a great inspiration for me and a light to help guide my way thorough a lot of pain.

To carry on the Hope, Kelly recently started Project Migraine Hope.  Please go and check out this amazing project Kelly started where people can post videos telling their experiences with migraines and how they have found hope.  If you have migraines, or are a caregiver or loved one of someone who does, please consider telling your story.If you haven’t done so already, Please, Please for all of us who suffer from migraines and those who care for us  sign the petition that the Alliance for Headache Disorders Advocacy started to Urge Congressional Hearings on the Impact of Migraine and Headache Disorders.  This is very important to all of us who have migraines and a project Kelly has been working very hard on.With the excruciating pain that Kelly lives with daily, she still has Hope, still finds a way to be a health activist, and finds the time to reach out to others sharing her light and sharing Hope.

Again, I’d like to say that there are MANY people who have helped light my way, and given me hope.  MANY who still do each and every day.  Please know how much I appreciate you all.

I chose these two very special women because of the horrors they have been through, and are still going though, yet they still find a way to be positive and share their light with others.

4 days on a Merry-Go-Round and counting

On By WendyIn Chronic Illness7 Comments

The title sounds like I’m going for a world record or something huh?  How many days can you stay on a Merry-Go-Round.   Hopefully, I’ll be getting off soon!

Funny, I used to love riding a carousel! I'm on the left, my friend Jenn is on the right.

Today is day 4 of slosh head and vertigo attacks.  I was awakened again this morning with the sensation that I was moving.  I took my mediation, and headed to the bathroom, hoping I could at least pee before the spinning started.  As I was leaving the bathroom I called out to Stuart, he woke up and I said in a sing-song voice, “It’s Back!”   He jumped out of bed, boy that man can move fast when he needs to.  I’d made my way to the bed with my walker, when I let go of the walker and started to sit on the bed it felt like someone pushed me down!  If I’m going to have a drop attack I’m glad I was already falling toward the bed!

I was in full spin at this point.  Phenergan suppository time.  I noticed the day before that staring at a fixed spot on the wall was not working, it just started moving and my eyes followed.  This morning I started staring at something on my night stand, about 1 foot away, and closed one eye…this really helped.  But I was so sick, the heat was engulfing me.  The diarrhea started first.  Then the vomiting.  Luckily neither lasted long, but I feel like crap.  My head hurts, I do not feel steady enough to walk unassisted.  I’m so very tired, but can’t seem to sleep more than one hour at a time.

I weighed myself our of curiosity.  I’ve lost over 5 pounds in the past few days.  I promise I am staying hydrated and I am eating.

I emailed Dr. Kaylie just to let him know how different things are since I saw him just one week ago.  Just a FYI, so he is aware.  He wrote back, thanked me for the update and so sorry I am feeling bad.  I know he wishes he could do more.

Stuart has a theory…and I’m wondering if he’s right.  He thinks perhaps my pressure has built up again, and I just had a “blow out”.  That would definitely cause these symptoms.   But right now I don’t know what they could do about it.

Stuart talked to the ASL teacher and he said she sounded very apologetic and concerned.  She understands my frustration but doesn’t know how to fix the situation.  She said later the class does go to non-speaking, but I think by that time I’d be so far behind I would be lost.  She admitted this class is set up more like a foreign language class and not a class for the deaf.  We are going to look into a refund tomorrow.

Someone sent me links to a few on-line tutors who she worked with, and we think we will check them out.  (thank you Antonia)

So that’s if for today.

Not a great way to celebrate Stuart’s Birthday!  Him taking care of me….once again wiping my ass, holding my head as I throw up, cleaning every thing up, helping me to and from the bathroom, feeding me…..and he’s been working today and did some laundry.  This Superman deserved a nice birthday.  Luckily I gave him his gifts early.  One I had to because he was about to buy it!  The other, he got a massage at home yesterday…it was supposed to be a surprise, but he decided he was going to give that to himself…after I’d already had it set up for over a month!  Going out to dinner is on hold.  No cake.  I wish I could have doted on him or a change.  I’ll make it up to him. *wink*

3 in 1 – 3 mini posts, I need to catch up!

On By WendyIn Chronic Illness4 Comments

I don’t know what happened with this post, I thought I posted it a couple of days ago.

I just realized it was never published!

A little anti-climatic after my last post…but just imagine you read this one first.  : )

1 – WEGO Health Award Winners

Be sure to check out the WEGO Health Award Winners!  You can find the winners with links on WEGO Health on Facebook or on the WEGO Health Blog Post.  Keep watching these sites for more information about the 2012 Health Awards.  This was WEGO Health’s first Health Activist Awards and they would like your input to help make them even better, you can take a quick poll here http://4159395.polldaddy.com/s/tell-us-what-you-thought-of-2011-health-activist-awards.  I am thrilled that I was chosen as a finalist for the TMI Health Activist Award.  There were many nominations for each category, I hope you took the time to nominate your favorite blogs.  Everyone who is a Health Activist should be proud of what they accomplish.  You make a difference!

Brain MRI - photo from http://www.eldr.com

2 – Monday, January 30th…a day at Duke.

On Monday I had 3 appointments at Duke Medical Center. 12:15 pm Clinic 1D have blood tests.  Since this is a mini-post I will not go into detail about how odd the technician was, and how very painful the procedure was, needless to say, it wasn’t the best experience.  (who takes blood from a person’s hand?  Without even looking for a vein elsewhere?  And fishes around under the skin for the vein?)  Yes, not a goo experience.

1:30pm Lennox Baker Center (located about 2 or 3 miles from the clinics) for Brain MRI with Contrast.  The first person we encountered there was very confusing to me.  I kept getting confused as to what I was supposed to do next, I told him I couldn’t hear, but he just seemed to get frustrated with me…glad I had Stuart with me to help (but he got a bit confused too, so it wasn’t just the hearing issue).  I got an IV for the contrast dye, I have a huge black bruise from this, but it didn’t hurt nearly as bad as the blood test I had earlier.  The MRI itself was pretty easy, much easier now that I can’t hear the extremely loud noises that it makes.  (I also took a Valium before going, so it was much less stressful!)  When the technician took me back to Stuart, he just held the door to the waiting room and left.  Stuart wasn’t there.  I didn’t have my hearing aid.  I asked the people in the waiting room if they had seen another man, and asked them just to shake their heads because I can’t hear.  Everyone said NO…yes, I began to panic a little.  I’ve never been put in that type of situation before.  I couldn’t hear what anyone was saying, and I had no on there who knew me who could help me.  I went back to where we checked in, and Stuart was in that waiting room.  They told him that’s where they would bring me back to.  It was only a bit of a panic for a moment, but once again I’m reminded of how much I must depend on my husband.

Lunch – 2:45 – 3:10 Chipotle – There was really only one faster type place we could stop on the way back to the clinics for my next appointment.  We stopped at Chipotle.  I used to love this place, and I thought I was being very cautious when I ordered.  I had the grilled chicken tacos (no onions or gluten!)  Then I got some guacamole…I love their guacamole.  I didn’t realize until I’d eaten about 2 tablespoons of it that it has red onion in it.  My stomach bloated to such an extreme my loose top was very tight around my tummy, I really looked like I was pregnant!  I had the worst heart burn.  I was not a happy girl…but lunch tasted really good!

3:30 Duke Clinics – Dr. Kaylie’s office – As expected, my MRI was clear.  No brain tumor, a little fluid still around the surgery site, but that was to be expected, it will dissipate over time.  The greatest adventure we had at his office was with the Blood Pressure machine.  First they couldn’t get it to read my BP, then the BP cuff actually blew off!  She fixed it up, and then she took my BP again…it was 175/113!  They told me I couldn’t leave.  The nurse started asking me questions, was I light headed, did I have a headache….I mentioned I had heart burn, she started to look worried and asked if I had pain in my jaw.  I thought…oh great they think I’m having a heart attack!  I explained I had heartburn because I’d just accidentally eaten onions.   She decided to try a different machine, again, after numerous tries it wouldn’t take my BP.  We decided to rest for a bit and try again.  Third machine, finally read my BP 145/92 – yes still a bit high, but after what I’d just been through it was understandable, and Dr. Kaylie said I was OK to leave.  Whew!  I hope my blood pressure is normal next time I go to the doctor, I don’t want to go through that again.

This is a close example of what my new glasses look like.

3- New Glasses

After my appointments at Duke we went and picked up my new glasses.  I was so excited, looking forward to seeing clearer, the frames that would fit better with my hearing aid, the lighter material, and the new look.  I put them on and looked in the mirror and didn’t really like the look.  I’ll get used to it.  (I think most of it has to do with my face being so much rounder.  I’m just not fond of that look!)  In the office I thought I could see fine.  On the ride home I realized I couldn’t read the street signs.  Then yesterday while at class I realized I was having a very hard time going from distance seeing to seeing close up.  Oh great!  My optometrist and I discussed what I do and how I need to see.  She told me that the glasses I have now are single vision lenses., not bifocals.  So I decided to get two pair of glasses, one that is just single vision, and one that are called “computer progressives”.  They will help my vision seeing the computer and reading up close.   After examining the glasses I have now, I realized that they are in fact bifocals.  I’m not sure I would have added the extra expense of the second pair if I’d know this.  I’m usually very frugal about how much money I spend on glasses, but I was so unhappy with the last pair we decided to get the “perfect pair”.  Now for the beginning of trying to get these glasses fixed.  *sigh*

So there we go, 3 short versions of things I wanted to say….unfortunately, I still have much I want to post about.  Receiving the Candle Lighter Award and passing it on…a link to a post about being positive featuring me, and my day yesterday….so much I want to share, you may get tired of hearing from me.

The Good, The Bad, and The Ugly – all in just a few days.

On By WendyIn Chronic Illness26 Comments

This is not the post I’d planned to write, but life has thrown me for a loop so I’m telling it all….

The Good

On Thursday it was a beautiful day.  The weather was perfect with temperatures in the 70’s F, and clear skies; an amazingly gorgeous day for the second day of February.   I decided to take a drive for the first time since June.  I haven’t had vertigo for over a month so why not?  I went to a small town just north of us, it wasn’t a long drive and I chose that route because there is very little traffic on the road.  The top was down in my little car, and I had a blast!  What a milestone!!

Not so good – we went to our ASL (American Sign Language) class Thursday night.  This was our second class. I’m not sure I’ll go back.  I keep telling the teacher and the students I’m hard of hearing.  I’m so very lost in the class because i can’t hear what’s going on.  If Stuart tries to tell me what I’ve missed then he misses something.  I was so upset, I teared up 3 times, and came very close to just walking out.  To explain some of my frustration,, we have exercises where we each say things in sign language.  Then the teacher will call on someone to translate what the person said, I couldn’t hear what the person was saying so I have no idea if I understood what the person was saying in sign language.  (note, this is just one example).  I do not see how I’m going to get anything out of this class.  Stuart is going to write the teacher.  One huge problem, they allowed too many people in the class.  So there are 16 people in there and I’m the only one who is hard of hearing.  I feel so isolated and sad.  The one place I thought would be more understanding, and help me, is simply ignoring my needs.

The Bad

Friday I had slosh head all day, and was afraid I was catching a cold.  The weather had changed, and we had cleaners come in on Thursday (I’m sure they kicked up a lot of dust), so I   wasn’t that worried about it.  Probably just barometric pressure change and allergies.  Yesterday, I had minor slosh head, better than the day before, still didn’t think much of it since it was now raining.  We decided to go out and do some things.  When we were in Earth Fare (a small healthy grocery store), I turned to look at Stuart and the world spun around.  I tried to brush it off as a little disequilibrium but couldn’t.  We went to the little cafe they have so I could get something to drink and take my pills.  I sat for a little bit but things were not getting better, I had the overwhelming desire to curl up on the floor.  We hurried and bought our little bit of groceries and headed home.  Once in the car I was still feeling horrible and got Stuart to search around for something I could throw up in if I needed to.  I then took another Valium.  I don’t normally take them so close together, but we had a 25 – 30 minute drive home, and I did not want to have a severe attack in the car!  Wonders upon wonders it worked.  When we got home I was still pretty off but I knew the worst was not going to happen.

The Ugly

** some of the following may be too graphic for some readers.

Today I was just waking up and stretching when I felt my husband kissed me.  A pretty nice way to wake up huh?  The first thing I really noticed was how loud the tinnitus was.  My head was still a bit sloshy, and today it was also screaming at me.  Since I was a bit off, Stuart made me some breakfast and brought it up to me.  (oh, I have to admit he does this a lot any way…what a guy!).  After breakfast I felt exhausted and thought perhaps I should sleep a bit more.  I put my sleep mask on and started to doze, suddenly I felt like I was moving.  Stuart walked in the room and I told him, he grabbed me some pills.  I had to go to the bathroom.  He helped me there and left, but I ended up having to call for him to help me.  I couldn’t stand, pull up my undies, or anything.  He rushed in and helped me and nearly carried me to the bed.  By then I was in full spin.  I grabbed a second Valium (it worked the day before!) and Stuart helped with a Phenergan suppository.  *ick*

I kept trying to focus on one spot but the spot kept moving around and around…I was getting sicker by the moment.   I was nauseous, but hadn’t had the tell-tell sign of the extreme heat that usually precedes the vomiting.  Oh…but the diarrhea….I knew it was going to blow if I could make it to the bathroom or not.  I also knew if I moved my head enough to get up and go to the bathroom I was going to start throwing up. What to do?  I was getting pretty upset by this point…all the chanting of affirmations and envisioning myself as a tree with strong roots that cannot be moved were not working…I was starting to panic.

My dearest darling husband created the portable bed pan (a trash can with a liner) once again, like he did when I was stuck in bed for a week after surgery not able to raise my head.  So I scooted my butt off the bed over the trash can, keeping my head very level…and exploded!  Oh my gosh, I had no idea that was going to happen.  Sometimes the suppository makes me really feel like I have to go, but it just dispels what’s left of the suppository and a little bit more.  This was gross.  I was so embarrassed and just completely grossed out.   I kept apologizing and crying a bit.  After that ended, the vertigo started to subside.

Stuart was so wonderful.  He told me he’d much rather deal with the bed pan situation, than for me to throw up.  He said it’s so much easier on my body.  And he’s right, but the diarrhea in the make shift bed pan, and having to have him clean me up…that’s much higher on the embarrassment scale.  I guess I just need to get over that, and I’m so grateful I have a husband that will do anything to help me feel better.  He’s very right though, the vomiting is terrifying, and much more painful.  So I’ll swallow the embarrassment I guess.

I’m still slosh headed, and feeling a bit wonky.  I’m exhausted, have napped a bit on and off, but I keep waking up feeling worse.

 

When we walked out of the store yesterday, with Stuart helping me hobble to the car, I said to him, “Well, the surgery is supposed to make the vertigo 70 – 90% better, they never said it was gone.”  Very stoic of me, holding it all together.  However, once we were in the car and on the way home, I broke down.  I thought about how I drove just 2 days earlier, what if this had happened then?  I thought about how all I wanted to do in that store was curl up on the floor and pray for the room to stop.  What if I had been alone?  I feel like every time I feel I’ve made an advancement and can make some plans, the floor falls out from under me.

Even more reason to live every day as it comes!  I do not regret my drive, and I wasn’t far from home.  If I had gotten sick, I would have pulled the car off the road and called for help.  I would have handled it!  If I had been at the store alone…well, that would have been more difficult.  I probably would have taken my pills and left the groceries.  Gone to the car and called for help.  I’d rather be alone in my car dealing with this than in a public place.  I may worry, but I’m confident if the worst happens I will be able to handle it.

I’m so very honored! I’m a Finalist for the TMI- Wego Health Blog Award!

On By WendyIn Chronic Illness8 Comments

I’ve been chosen a finalist for the TMI (Too Much Information) Wego Health Blog Award.    I was thrilled and humbled when I was nominated, I couldn’t have asked for more.  Today I spent the entire day at Duke..running between clinics, and getting an MRI…today was long and often painful.  When I got home I collapsed in a tub, and finally around 10pm checked my email, and found 2 friends congratulating me on being named a finalist.  I was stunned.  Speechless – yes, I know that’s hard to believe, don’t worry it didn’t last long.  More than anything, I feel so honored.

I’ve been so busy the past few days I completely forgot they were going to be announcing the finalist, so this was a huge shock!

Please be sure to go to the WEGO Health Blog to find out all the finalist in each category!  Including my friend Kelly Wahle with her blog Fly With Hope, is a finalist for the Health Activist Hero Award!!  I’m so proud of you Kelly, for all you do!  You are such an amazing woman!

The other finalist for the TMI award are:

Mo- Mommy Odyssey

Jacquie Wojcik – Bad Pancreas

Sara – A Girl With Guts

Jenni Schaeffer – Jenni’s Guts

Brynn Hultquist – Lupus Interrupted

Be sure to check out these awesome Health Advocates.

But, beware, we are finalist for the TMI (Too Much Information) Award.  We “always goes there – no matter how personal or embarrassing the story.”

Why did I decide to tell it all, no matter how personal or embarrassing?  I was going through a very rough time with one of my chronic illnesses (Meniere’s Disease), I searched and searched to find out more about it.  I wanted to know if other’s were experiencing the same things I was.  I couldn’t find the ugly details.  People would mention having an attack, but no one ever gave any real details other than, having vertigo and vomiting for hours.  I talked to a few people privately and found that many were having some of the same things I was experiencing happen to them, but they were uncomfortable talking about it.

I was sure there had to be other’s like me, who want to know all the nitty-gritty details, to know they are not alone with what they are going through.  I then decided, I wanted to tell it all!  I want people to feel they can talk about what goes on behind closed doors, when we are alone with our illnesses.

After a few posts detailing the dark and ugly side of my illnesses, I was praised by my readers for being so open and honest.  When I wrote in detail about one of my vertigo attacks, I heard from many who were relieved to hear, they were not the only one who went through these things.  One very special reader, who fights her own battles with chronic illnesses, told me that post was the most terrifying thing she’d ever read.  I cried and cried after reading that.  I felt validated.  I was so relieved that people could understand, even people who do not suffer from Meniere’s Disease could read that post and “get it”.

I knew then, I needed to be a voice to this illness, and the other chronic issues I have.  I wanted to break down the stigma of telling it like it is.

No matter what the outcome of this award….I can not be happier than I am right now.  Being nominated by a reader, then after a very detailed process to pick the finalists…I am just so humbled to be in the same category as the bloggers mentioned above.

And I will continue to tell it all, the good, the bad, and the very ugly.  I hope you will keep me company along the way.


Round and Round we go, when it stops, no body knows

On By WendyIn Chronic Illness16 Comments

Yes, after writing such a positive post about all the things I’ve been doing lately, I’ve spent the last two days in bed.

Oh my aching ear! image courtesy of dreamtime.com

I have an ear infections, AGAIN!  At least I’m pretty darn sure I do.  The left ear, the one that I recently had surgery on, started draining more (it has been draining since surgery, this is normal, but it was clear and getting to be less and less.  It drains out of my ear because I have a tube in that ear.)   It started hurting, and the consistency of the stuff draining out looks like puss.   I’ve been running a low-grade fever, mostly at night.  And I feel very icky!!  Ugh!  So the world is very off-balance.

Please, don’t think ill of me, but I have about half a bottle of the Cipro Ear Drops my doc gave me last time, so I am treating myself.  (I would normally never do this, but I’ve had so many ear infections, I pretty much know that’s what it is.  I know…I’m recovering from surgery and should get it checked, if it’s not better Dr. Kaylie will see it on the 30th.)  I just didn’t want to deal with making an appointment, and going to Duke, ect ….ect….just days before I have to go in for blood tests, an MRI, and visit Dr. Kaylie.   Also, I didn’t want to suffer all weekend when I could get the medicine started.

Human Gyroscope (image courtesy of http://www.schriever.af.mil)

Yesterday and today have been a bit rough.  I feel like a human gyroscope.  My head feels like my brain is lose and moving around.  I was sitting on the toilet last night and the tile on the floor wouldn’t keep still.  They kept going round and round in a clockwise spin.  Ahhhh!  I hate this, but at least I’m not throwing up for hours on end.

The weather has also changed, so that is a contributing factor and I’m fighting migraines.  To top it all off, I’m just about to start my period.  That always throws a wrench in things.  Not a happy girl right now, but I know it will get better, so hope is always on the horizon.

Does anyone else have a really hard time going to sleep because of spinning?  Even when I’m not feeling off, when I close my eyes and try to go to sleep I will start to feel like I’m moving.  I jerk, and have to calm myself.  Over an over…I’m actually afraid to try to sleep now.  Many nights, I don’t get to sleep until absolute exhaustion overcomes me.  Normally between 3am and 6am.  Last night was a 6am day.

However, another obstacle to my sleep is pain.  Headaches, muscle aches, hips…ect.  It’s all worse now that the weather is colder and it’s raining.  But I can’t live on pain pills.  What to do, what to do?  We know sleep aids just don’t work for me….I’d really like a good nights sleep, preferably on a regular basis.  Exercise would probably help, but that’s just not possible right now.

Whew…a lot of whining today huh?

Don’t worry, this is just a little bump in the road, one step at a time, one day at a time….the sun is right over the horizon…I can feel it…and know I’ll be back to my normal positive self in no time.

**Please note, I have been reading all my friend’s blog entries, thanks to my new phone, I can read your blog entries anywhere.   I really need to acknowledge a couple of posts here, but I haven’t been feeling up to par, and simply haven’t been on the computer as much.  I’ll try to catch up on everything soon.  But I may miss commenting, please don’t be offended.  I’m still reading, and thinking of each and every one of you.

Dizzy Day – and an update on SOPA and PIPA.

On By WendyIn Chronic Illness, Headaches, Meniere's Disease10 Comments

I should have known better.

As I’ve mentioned before, I haven’t had the greatest sleep schedule, or sleep at all really.  So my doctor put me on Rozerem.  Rozerem is a sleep aid, but it isn’t addictive, and can take up to a week for full effects.  4% of the patients had increased dizziness compared to 3% who took the placebo.  So a good choice for me, right?  Umm, not so much.  It was prescribed before my surgery and each time I took it I woke up with vertigo.

Rozerem Ad

Last night I decided to give it a try again, thinking possibly it would be different now since things have calmed down so much.

Yes, I should have known better.  I woke up, not with vertigo exactly, but the world is not being still!  I’m using the walker to get to the bathroom and every time I move my head to either side I feel like I’m going to barf.  I have acid reflux so bad, it hurts all the way down my esophagus and into my stomach.  Neither my prescription acid medication nor Maalox is working.  And the diarrhea is back.  (yes I had one day of normality, yesterday, I’ve not eaten any vegetables, except a pickle and a piece of lettuce on my burger yesterday, for 3 days.  The burgers I made, so I know they were safe.  I think most of the diarrhea today is because of the spinny head.  It does put me in the fight or flight mode, constantly expecting a full-blown attack.

I got the book Food Intolerance Management Plan by Sue Shepherd yesterday.  It has the most up to date information about Fructose Malabsorption and other food intolerances.  Sue Shepherd is considered THE expert in Fructose Malabsorption (FructMal).  So I looked at the book, from cover to cover yesterday.  I just knew I’d find something I’ve been doing wrong.  Nope.  I’ve been eating all safe foods.  This book gives a lot more variety than I’ve been eating, and says I can eat much larger servings than I have been.  So why is it that every time I eat a vegetable, I get sick?  Ugh!  I’m working on it.  That’s my big goal this year, find out how to stop this GI trouble!  Then I’ll think about losing weight.

So enough about my bad day.  (we all know, it’s just a day, one day at a time right?)

Image credits: hikingartist.com

A friend of mine works for Red Hat. It’s the world’s Open Source leader, according to their website.  (yes, I’m a big foggy on all of that.  So not the geek.)  My friend, Ruth, wrote an article about SOPA and PIPA.  Here’s the link: http://opensource.com/life/12/1/sopa-shelved-fight-must-turn-pipa-wikipedia-will-join-blackout

The title tells the story in a nutshell.  SOPA shelved, Fight must turn to PIPA. Wikipedia will join blackout.

Did you see the last part…Wikipedia will join the Blackout!!!  (Don’t forget the Blackout is the 18th, so you may be on line and not be able to find many of your favorite spots.)

If Google would join, that would make all the difference.  Could you imagine a day without Google?  Even just shutting down their search engine would make a huge statement.  But alas, I doubt they will.

However, it also looks like WordPress has joined the strike, so my blog may not show up anyway.  Neither would any other blog on WordPress.

On a different soap box….Don’t forget to PLEASE sign the petition about Headache Disorders – The Petition is Here.

Now, I’m going to take a nap, and hope my head is less wonky when I get up!

Good Days, Wonky Days, and Great News

On By WendyIn Chronic Illness13 Comments

What shall I start with…  How about the GREAT NEWS!

Stuart accepted a job yesterday.  He had two companies make offers and it was hard to choose between them, but he chose the job that allows him to telecommute.  I believe his title is Senior Software Engineer at MEDSEEK.  (he’s been working with the medical industry for a long time and enjoys it.  Hopefully, he will be very happy in this new position.)  We’re excited!  He starts on the 23rd.

Also good news, Stuart’s sister had her second child today….well technically yesterday.  He will be sharing the same birthday as my sister.  (I hope that doesn’t jinx him, at least I’ll never forget it!)  His name is Johnathan David…after his grandfathers.  Looking forward to pictures.

I’ve had some good days, today was a pretty decent day.  We got out of the house, and went grocery shopping.  Yes, I was excited about that!  I cooked a great meal a couple of nights ago, and am looking forward to cooking more often.

However, I’ve had some Wonky Slosh Head days too.  The 11th…not a good day.  It was overcast or raining all day, and my head felt like it was full of goop, and my brain was sloshing around inside of it.  For the first time in weeks, I felt I needed help walking.

Today, I had the strangest tinnitus.  I always have some sounds, and at times they can get pretty obnoxious and just odd, but this time I could feel it.  What comes to mind is the poem, “I heard a Fly Buzz” by Emily Dickinson, luckily I wasn’t dying.  However, I could also feel the thing in my ear.  The vibration was so annoying…and dang it all…strange.  I sincerely hope I do not have that sensation again.

My hearing, is also strange.  The ear I had operated on in December had 0% word recognition in November.  Now it’s fluctuating, a lot!  Sometimes I hear nothing out of that ear, sometimes I can hear Stuart talking when I don’t have my hearing aid in the other ear.  And I promise I’m not hearing out of that ear!  Speaking of that ear, I think my hearing is dropping and/or simply getting more distorted.

the sign for ASL (American Sign Language) - photo from Lee Clarion University where ASL counts as a Foreign Language Credit

I’m so happy we are starting our ASL classes in 2 weeks.  I really need a back-up way to communicate.

I have a question, for those of you with Meniere’s.  How many of you were told you would have “burn out”?  I learned today, from a hearing loss specialist, that they no longer believe burn out happens.  I’m involved in an email group from The Say What Club (SWC), they have a few groups for people who are Deaf or Hard of Hearing.  I’m a member of the Meniere’s Group.  Everyone on there has some pretty profound hearing loss.  I’ve found that a few on the board are a bit older than I am.  I know one man is 76.  No one has experience “burn out”.  Only one member has no vertigo any longer, and he had Streptomycin injections, so he had no balance center.

On another note, there are a few on there who have Cochlear Implants, and love them, they say they are they are much clearer than hearing aids!  I’m beginning to look forward to the time when I can get one.  Then I think, I may just want to embrace the deaf world.  I’ve been pretty conflicted.  Then I thought, why do I have to choose?  I think I’ll probably do a bit of both.  If I can get a CI, I probably will.  But I want to know ASL and be involved in the deaf community too.  You never know when technology may fail.

Coming soon…learn all about a different part of my life.  Bipolar I Disorder and Me.

 

Hard to believe it’s Winter.

On By WendyIn Chronic Illness16 Comments
Sorry, Not an actual photo of us, but I'm sure you can feel of the sensation! Whee!

On January 6th, and 7th, we went driving around in my Little Yellow Bug with the top down!  That’s right, the convertible was being used with the TOP DOWN, in JANUARY!  Woot!  Last winter was full of snow, and rain, and ice…and well it was just miserable.  Much colder and much more snow than North Carolina normally has.  However, if there is one thing I’ve learned about living in the South East, weather is anything but normal.

This winter has been mild so far, just a few freezing days, I think I could count them on one hand.  I’m loving it, but it’s odd, even for N.C.  We will often have a warm patch in the winter, but this is like Spring.  The plants are so confused.  My herb garden has new growth, my neighbor’s Irises are coming up, yes, the people and plants alike love this weather, but I’m afraid the plants will suffer greatly when the freezing days arrive again.  It looks like it will be cloudy and/or raining for most of the week.  I bet it turns cold after that.

Pink Wildflower from my garden 2011
I took this photo from our wild flower garden, Fall 2011

I’ve been feeling better than I did before the surgery, some days I feel really good!  Like yesterday, it was a good day.  We had to do a little shopping, so we put the top down, and took the long way through the country to the store.  It was blissful.  We came home and I worked in my studio for an hour..maybe two.  Earlier in the day I threw some things in the Slow Cooker, so I even made dinner!

I’m still having a lot of GI issues.  I can’t figure this fructose thing out I guess.  I finally found a book I’ve been told will help me so very much!  The book is not available in the U.S. (at least not yet.)  It was published in Australia.  I started to give up and order it from Australia, but it would have cost me close to $70 with shipping and tax.  I just couldn’t do it.  Finally  I found the book at a used book store on-line, thanks AbeBooks.  For less than $45.  They only had one copy.  I snapped it up!  So I should get it in a couple of weeks.  I also found a nutritionist who is “well versed” in Fructose Malabsorption and the low FODMAPS diet.  Woo Hoo!  Finally!  I may start seeing her later this month, or early next month.  I want to see what the book says first.  This running to the bathroom 6-10 times a day is old!  I’m really tired of my GI system just refusing to work right.  **TMI time…I had a rush moment to the bathroom today, I’d already been 4 times, this one was very loose and black…yes, black.  Scared the crap out of me (pun intended) .  I thought OMG I’m bleeding internally.  Then I remembered I took Pepto Bismol last night, a bit more than I intended to.  Please, if you  take Pepto, remember it can turn your stools black, and your tongue a funny color too, but I’ve only had that happen once.  So don’t let it scare you….like it seems to always catch me off guard.

Today,  I have Slosh Head.  I feel stuffy, and woozy.  I’m nauseous most of the time lately.  If I’m eating, the nausea is relieved, but shortly after I eat it returns.  ick.  But today is worse.  The tinnitus is screaming, my hearing is down!  (I only heard 3 dings..barely..when I turned my hearing aid on, I normally hear 5…they are different frequencies, so I’m not hearing some of them)  The TV sounds tinny, Stuart sounds muffled.  I just don’t feel good at all today.  I feel like Mr. Meniere’s is battling with Allergy Man and Human Barometer is getting his licks in too!  All inside my head..and tummy!  Just ick.

**GREAT NEWS**  Now the reason I can even consider spending money ….Stuart has been offered a job!

Actually he’s negotiating with TWO companies.  One is telecommuting, one is ‘local’.  Stuart has asked the recruiter for the ‘local’ job, if they would consider allowing him to telecommute and come in perhaps one day a week.  (commuting to and from Raleigh. the next city over, is not fun!  Rush hour is horrible, he’d spend at least 3 hours a day in his car…plus the wear and tear on the car, the extra pollution, and parking…ect…it all ads up.)  They have until Tuesday to make a decision and an offer, he told the other company he would give them a decision on Wednesday.  They both sound like excellent companies, and Stuart enjoyed his interview with both.  So, either way, I think he’ll be happy.

He’s been out of work since Halloween.  I knew it would be hard to find a job over the holidays, and it was.  But he wasn’t idle.  He sent out resumes…lot’s of resumes, had interviews, sold things on eBay, cleaned out his office, is preparing to sell the other car….he’s been a busy man…plus taking care of me wasn’t easy right after my surgery.  I’m actually grateful he wasn’t working for a while there.  Now that the holidays are over, he is in demand!  I know it feels good.  You can tell he’s feeling good about things.

That’s all for now.  I feel like I could just talk and talk.  I think I need to write more than I have been lately, shorter posts more often?  That may be a good idea!

 

The New Year starting out…O! Wow! and Ow! – updated…see end of post.

On By WendyIn Chronic Illness10 Comments
New Year's Eve 2012

If I could feel the way I have since New Year’s Eve Eve, December 23rd, minus the migraines, I would be very happy!

Every day for the past….I don’t know how many…days I’ve woken up with a migraine.  Most days I can take something, and it ebbs enough that I can do something, often I have to take something numerous times a day, but at least it has been tolerable after taking the medication.  Unfortunately, one of my medications, I can only get 18 a month, so if I have to take 2 a day to help with the headaches they won’t last very long.  My doctor said we need to wait 3 months after surgery to start trying new treatments for the migraines.   We need to see what this will do first.  One month down!  Just two more to go!  (this is the first day since the 30th, that I have spent the day in bed.  My head hasn’t eased up much today, for a little bit here and there…like now..but most of the day I’ve spent in darkness with a warm hat on my head (I found this helps, I don’t know why), trying to sleep as much as possible.)

New Year’s Eve is usually very hard for me.  As I’ve mentioned before my mother’s birthday was New Year’s Day, and it hits me hard.  I still miss her terribly.  This year, Stuart asked a couple if they’d like to join us, hoping it would help me get through the rough time, and make things happier.  But I woke up with a migraine from Hell.  I couldn’t stand any light, I was nauseous, and I just wanted to scream!  So we felt we should cancel early, just in case the pain didn’t subside, giving our friends time to make other plans.  Luckily, after much medication, I felt better.  My headache wasn’t gone, but it never is, however, it was much better.

I decided to try to work in my studio a bit.  Something I haven’t done in months.  yay, for milestones!  I got part of my mask painted, thank you Judy, I’m thinking about both my inner face and outer face while working on it.  (if you’d like to know more about this please visit Judy’s blog, Creativity to the Max.)

We decided to have a special dinner that night, one we didn’t have to cook.  So when Stuart went to pick our dinner up, I decided to make it very special.  I set the table all pretty, and put candles on it.  I even got pretty myself.  I put on a skirt and nice top, and even makeup!  Stuart was VERY surprised!  And I have to say, I think that was the best steak I’ve ever had!  We haven’t done anything like this in a long time.  It was very romantic.

It was still 6 hours until midnight, so we thought we’d start a puzzle.  We worked on it for about an hour, then I started to get too sore, and my headache was getting worse.  So we headed upstairs, I took some more meds, and we watched a movie.  By midnight I was feeling good again, and a bit frisky.  (hehehe)  We were watching and waiting for the ball to drop, and I started coming on to my husband….one thing led to another, and we rang in the new year with the Big “O”!  Yes, it hurt, but it was so worth it!  We did elevate my hips a bit, and it helped with the hip pain!  Yay.  (Milestone number 2!)  Now, that helped me emotionally too!

On New Year’s Day it was 65F degrees here.  I knew that temperatures like this would not last long, so I had to get out of the house.  We needed something from the grocery store, so off we went to Whole Foods.  I thought we could get the gluten free bread I like there, but nope.  Every time I go to Whole Foods I’m disappointed.  We started to go to the store we know has it, but it’s more than a 30 minute drive, and I was hungry and getting tired.  We stopped to eat to see if I’d then feel like going, the food was good, but I didn’t feel well afterward.  I don’t know what I’ve been getting into lately, but I’ve been having GI symptoms a lot!

We were both tired, and I wasn’t feeling great, so our New Year’s meal would have to wait.  I can’t have Hoppin’ Johns any more any way…(very sad face).  I can’t have legumes, and black eyed peas are one of the main ingredients…I really miss beans!

Here come another milestone, I cooked on January 2nd!  Stuart helped a little, but I did the main cooking!  So excited, I really like to cook, and haven’t been able to in months!  I made collard greens (a must in the Southern parts of the US, collard greens represent money, so if you want more money throughout the year, you eat collards, another part of Hoppin’ Johns).  But I cooked them a bit differently.  I sauteed them with bacon, Mirin Sauce (a sweet rice wine used in Asian cooking), a little Rice Vinegar, and sprinkled with celery seeds.  They were very tasty.  We planned to have ham, but couldn’t find one that wasn’t way too big, so we cooked up a hot dog for each of us, and I had some left over mashed potatoes.  It was actually a pretty darn tasty meal!  (before everyone with Meniere’s freaks out about how much salt I ate,the bacon was low salt, and so were the hotdogs, plus I only ate one.  However, I’m not sure a low salt diet has helped with my Meniere’s symptoms at all.)

One more good thing happened, but it isn’t finalized yet, so I’m afraid to mention it and jinx it.  (It has to do with Stuart…you can probably guess.)

I started to make up a list of things I want to accomplish in 2012, but didn’t get far.  I realize I can’t really plan much and just get upset when I can’t accomplish what I plan to.  I really, want to lose some of this weight, and be able to exercise some.  This I will figure out how to do!  Even if I get to be just as sick as I was for the past 6 months, I’m going to figure out how to exercise.

As you see at the top, Stuart took pictures of me on New Year’s Eve, when I saw them I cried.  I thought, that can’t be me!  This woman is so overweight, and old.  I don’t want to feel that way about me.  I have to find a way to get my body image self esteem back.  The picture I published at the top was the best.  There is another that I feel shows every hard thing I’ve been through over the past couple of years.  Following you will see a photo of me that was taken just before all of this started happening, and the photo that was taken on New Year’s Eve that I feel, shows the pain I’ve endured.  I’m only showing these to show how much I’ve changed in a relatively short period of time.

**I’d like to say, the weight bothers me mostly because of the added health issues.  I now have non-alcoholic fatty liver, and very high triglycerides.  I will not be able to get control of these until some of the weight comes off and I can exercise.  Yes, my body image has taken a bit of a hit, but my husband thinks I’m beautiful, and desirable so that’s a confidence booster.  However, the fact that I get out of breath so easily, and have a hard time getting up at times.  (the tub is a big challenge.)  With my hip issues, added weight is not a good idea.

Wendy Dec. 31st 2011 -(yes, it's a bit out of focus, sorry)
Wendy - Late Fall 2009