Tag: endolymphatic sac surgery

Meniere’s Disease Update

On By WendyIn Chronic Illness, Meniere's Disease7 Comments
menieres-drunk-cartoon
cartoon source here

Over on Hearing Health and Technology Matters’ Dizziness Depot, Alan Desmond has been discussing Meniere’s Disease.  He published a 10 part series in 2012 on this subject but decided it was time for an update.  No it’s not going to take 10 parts.  Maybe half as many.  🙂

The first part discusses the use of Betahistine as a treatment.  Meniere’s Update #1  Betahistine.  Betahistine is frequently used in the UK but is not approved by the FDA for use in the US. There has been one important study that has shown that while harmless Betahistine it probably does little to treat Meniere’s.

The second part of the series focuses on Diet and Diuretics. There is a lot of good information in this section.  In the summary Desmond states “it appears the general sentiment is that it (a low sodium diet and diuretics) might help and it will do no harm.”

Part 3 discusses the use of the Meniette Device.  I had a guest write about her experience with the Meniette device, you can read about it here.  Desmond summarizes his write up saying, “the evidence keeps building that the Meniett device is a plausible idea, with little evidence of clinical effectiveness.”

Part 4 focuses on Endolymphatic Sac Surgery.  I had Endolymphatic Sac Decompression surgery, you can read about my experience here.  I was unfamiliar with some of what Desmond discusses in this section.  I found it very interesting.  I wish I had read it before I had my surgery.  As he said in the last paragraph,  “All of the procedures discussed have similar impact on control of vertigo symptoms, and that effect is not terribly different than the natural course of Meniere’s disease in patients that do not undergo any of the mentioned procedures.”

Part 4.5 Middle Ear Muscles and Meniere’s.  This part talks about something I’ve never heard of before.  It was mentioned in part 4, and it is expanded on here.  There is a procedure where you sever certain muscles in the middle ear to control Meniere’s symptoms.  You must read this part of the update to get a clear view of this procedure.  It’s very interesting.

Part 5, discusses the Natural Course of Meniere’s Disease.  So does it help to do destructive surgeries or would it be the same as the natural course of the disease?  If you look at percentages it’s about the same.  However, if you are having vertigo on a regular basis you are pretty desperate to do anything to stop it, so when a doctor tells you that a surgery may help, well you jump on it.  I know I did.  But I also know, in my case, that it didn’t really help in the long run.  If you have Meniere’s in one ear, the chances are your symptoms will greatly reduce in 2 years and will mostly go away in 8 years.  There is a small percentage where this is not the case, these people will continue to be symptomatic.  This does not include patients who are bilateral.

Meniere’s Update Finale – In the finale Desmond discusses the proposed causes of Meniere’s, and goes into detail on the migraine variant.

I also read a new study comparing steroid injections to gentamicin injections in controlling attacks of severe dizziness, and preserving hearing loss.  It found that steroid injections are equal in controlling vertigo without causing the hearing loss that gentamicin does.   I found this study interesting.  The study doesn’t mention that you may lose your balance function with gentamicin injections, it only mentions hearing loss as the destructive measure. Regardless, if intratympanic steroid injection are equal in controlling vertigo, then one would not need to resort to gentamicin injections.  This is good news for me, as the next step we planned to take is steroid injections, if it didn’t work we were going to talk about gentamicin (again, if you’ve been reading this blog, you know we’ve discussed it before).  This study changes that thought process.  I do not see the need to even discuss gentamicin if it will not control vertigo any better than steroid injections.

I think I’m caught up on all things Meniere’s for today.  I do think now might be a good time to give an update on me.  Recently I’ve been having a lot more vertigo and over all dizziness.  As the Summer went away so did my reprieve.  I may be talking to my doctor about steroid injections soon, but right now I’m handling things okay.  As I carry on, I’ll talk more about it.

How is everyone out there doing lately?  Check in with me.  🙂

 

Surgery went “Perfect”

On By WendyIn Chronic Illness, Cochlear Implant11 Comments

Sorry I haven’t posted, and unfortunately this post won’t have photos, I promise they will be coming soon.

My surgeon told Stuart that my surgery went “perfect”.  Yay!

Of course, I’m a weird patient….I had a reaction to the antibiotic.  Not a severe reaction, but I looked like a clown.  I had very red cheeks.  Nothing serious, and it faded the next day, I didn’t even have to change my antibiotic, but we had to keep a watch out for a little while.

I also had a reaction to the adhesive they used to attach the heart monitor to me.  I looked like I had huge hickies from an octopus hugging me.  But again, nothing serious.

The pain isn’t bad.  But it is there.  Yesterday was worse, probably because I hate taking pain medication and was tired for feeling drunk.   I am swollen, but I think it’s better than it was yesterday.  I’m very tired, and I’m having some killer migraines.  That’s why I haven’t posted before now.  The migraines made it way too uncomfortable for me to look at the computer.

So….everything is fine!  I’m doing well!

My Cochlear Implant will be activated on the 31st.

I’ll get photos up as soon as I get them off of my phone!  They look much like the photos from the endolymphatic sac surgery…same smiley cup and everything.  Wait until you see how much hair is gone!  (really, not much at all, you can barely tell!)

off to sleep some more.

Thank you all for so many get well wishes.

One Week until Surgery

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease18 Comments

As excited as I am about getting the Cochlear Implant (CI) next week, I’m nervous too.  I realized this yesterday.  I had appointments scheduled for this week and a dinner with friends scheduled for Sunday, and I told Stuart I just couldn’t do it.  I simply feel like there is too much stress on me right now.  With all the stress, I was making myself sick.

So what am I nervous about?  You would think I’d be nervous about the surgery, but I’m not.  I am nervous about the nurses finding a vein for the IV before the surgery, that is always an ordeal with me.   However, mostly I’m worried that the surgery will be postponed.  There have been so many delays, I’m having a hard time believing it’s going to happen.  I am expecting something to happen…I’ll get sick, my doctor will get sick or have to postpone for some reason….anything.

Now that I realize what has been bothering me so much, I’m dealing with it much better.  I know the surgery will happen.  If some unforeseen circumstance causes the surgery to be delayed , I’ll deal with it.  I know it will happen, if not next week as scheduled then as soon as possible afterward.  I still don’t want to be stressed out more by going to the dentist, having a mammogram, and having a dinner party.  These things will just have to wait.

Now, let’s talk a little about the surgery.  I’m pretty lucky really, about 90% of the surgery has already been done to me.   Since I had the Endolymphatic Sac Surgery, they don’t have to drill a hole in my head.  It’s already there.  All that has to be done is thread the wire from the CI into the cochlea, and place the implant.

There were 3 companies for me to choose my CI from, each had positives and negatives but really they were all pretty close.  I chose Advanced Bionics.  This is a very personal decision for each person who gets a Cochlear Implant, I felt that the Advanced Bionics CI would fit best in my life style.

This is what will be going in my head:

Cochlear Implant from Advanced Bionics. http://www.advancedbionics.com/us/en/products.html

I’m so happy that Duke is a two processor facility.  The processor is the part that you see on the outside.  Since Advance Bionics offers more than one processor, I was given the choice of getting 2 the same or one of each.  I chose to get one of each.  One processor is called the Harmony, it is a Behind The Ear type.  I liked this model because the T-mic (microphone) is located at the opening of your ear, so it will be easier to talk on the phone, and my ear will act as a natural buffer for noises, like your ear normally does.

Here’s a photo of the Harmony Processor:

Harmony Processor – photo from Advanced Bionics website.

The Harmony comes in a variety of colors.  I think I was allowed to choose 5, but it’s been so long now, I don’t remember what colors I chose.  We’ll have to wait and see after I get hooked up.  You can use regular hearing aid batteries, or rechargeable batteries, I’m sure you know which ones I’ll be using.  I was able to chose different types of rechargeable batteries, small and large.  The small battery doesn’t last as long as the larger one.  I ordered both.

The other processor I chose was the Neptune.  The Neptune is capable of being Water Proof, it’s the only CI that is Water Proof, so I can swim in it!  The Processor is not behind the ear (BTE) it can be clipped to different things: an arm band, your shirt, a lanyard, your hair…ect.  The microphone is on the part that fits to the head.

Here’s a photo of the Neptune:

Neptune Processor – photo from Advanced Bionics

I realize the photo above doesn’t give you a good idea of what the Neptune really looks like.  So here’s a few that will give you a better idea:

This photo shows the Neptune Processor. The thinner profile is not water proof, you must add a different piece to the processor to make it water proof, that is shown on the thicker profile. (photo from AdvancedBionics website)

 

This shows the Neptune on a child while swimming. The processor is hooked to the arm band. (photo from Advanced Bionics)
This shows the processor clipped in a pocket, and in a girl’s hair. (my hair is long, I could completely cover the CI in my hair if I wanted.)
(photo from Advanced Bionics)

With the Neptune I was also given the opportunity of picking all kinds of colors.  I know I picked a brown, and the lime green seen above, but I don’t remember the rest.  We’ll all be surprised when I get hooked up.

The CI will be turned on 2 weeks after surgery.  That will be the beginning of August, hopefully the 2nd or 3rd.

Anybody want to know anything else?

I know this is a LONG post, but it’s full of information, right?

We can make it, one day at a time. : )

Wonky, Sloshy Head

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease11 Comments
Image from deviantArt. “loose” by pehdtsckjmba

If you have Meniere’s, I know you know what this title means.  For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling.  I dare not move my head too fast or I’ll fall down, really, I did this yesterday!  I haven’t felt like this in a few months, I wonder what has started it now?

Could it be….

  1. Hormonal Changes?  It’s that week, but it hasn’t started yet.
  2. Missing one of my meds for a day and a half?  (that’s 3 doses)  This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up.   (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
  3. The weather?  We have had some big weather changes almost every day.  We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden!  But this has been happening for weeks, so why bother me now?  (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
  4. It’s just that time?  We all know Meniere’s is NOT predictable.  So maybe this is just the monster saying hello.

I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time.  Not much since the surgery in December.  I have to say, I’m thrilled with the results of that surgery.  I have only had one mini vertigo attack caused by Meniere’s since my recovery.  Yay!  The Endolymphatic Sac Surgery was a big success for me.

(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled.  They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor.  As long as our plan doesn’t change everything should be the same.  NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect.   They never even say if it’s covered by our plan at the present time!  What a pain!  So I won’t be getting my CI activated before my birthday….I’m so disappointed.)

I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.

 

Wendy just write…. #HAWMC Day 12

On By WendyIn Chronic Illness2 Comments

Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!

(written April 5th)

image courtesy of http://www.thechicagobridge.org/

“Wendy” just write, don’t stop, don’t edit. Post!

Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.

Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer.  What can I offer.  I can’t even hear them to talk to them.  I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests?  I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!

This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!

I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!

I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.!  I was so busy….I didn’t think it would end…

After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.

I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece.  But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.

Now I’m falling apart….and I’m angry at myself about it!!!?????

I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad.  I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me!  I’m angry I can’t lose weight….I’m MAD AS HELL!

I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that.  However, I know me, and I will. I’ll get it together, and get myself another lease on life.  Life is good.

I have such a good husband. It can’t be all bad. I must think of the good days.

Yes, it’s still my blog here….it has many personalities…or something. Plus update on symptoms, and Spring.

On By WendyIn Chronic Illness8 Comments

You may read my blog from your email, and haven’t even seen it….but if you have, you may have said…”she’s at it again!”

and yes I am….I just didn’t like it.  Too busy, and I didn’t like the page color.

So many things I can’t change on Word Press.

And I don’t have Photoshop right now, I’ve been trying to use Gimp…but I’m so lost with that program it were a real book I would have torn it to shreds by now.  Ugh!!!

This looks like me, trying to use Gimp.
(image source free clip art.)

I miss Photoshop, I need to buy it, but I need to buy a teacher or student version…I really can’t afford the off the rack price.  whew.  That’s like the difference between designer clothes and thrift store, for the same goods!  I just don’t get it!

So for now I wait.

Did you know on WordPress you have Pay to change the CSS on your blog?  You have to pay to change your font….yes thank you can get around that one by writing in Word then copying over, but not all fonts copy over right.  And I’m lazy.  I’m just shocked at all the things that are now considered “upgrades” that used to be free.  I know this is a commerce driven world, but it makes me sad when you start with something because it offers certain features free, then it changes.  And I’m sorry, I’m not paying $30 a year to be able to customize my blog.  Heck I can’t even do it, I’d have to get my hubby or my friend Vincent to do it.  And I’d only do it about once a year, tops. If I found the perfect look, I’d probably change very few things ever again!

OK….So, I hope you won’t think ill of me during this transition time.  I like the retro look.  I’m going to try to put little ants in the header, and that will probably be it for a while.  If I can get that done.

Symptom Update: My headaches, had decreased, but recently every time I go to sleep when I wake up I have a blinding headache, like a white light pierces my brain, the intensity doesn’t last for long…but the headache doesn’t go less than a category 6.  So I’m a bit icky most of the day.  But it’s better than it was!

Visual problems are better.  The one that has really stuck around is the…oh I don’t know how to describe it…not only can I not see white on black very well, the white looks gray, but black doesn’t look black-black.  It has this variable tone.  Everything looks a little off in tonal values.  Which is very odd for me.  But I can still tell what color is what, I’m not color blind!!  Yay!  I just can’t tell if they have white  or black added to them.

Very tired.  But not sure if it’s the disorder or the meds, both can cause it.

The Meniere’s has been staying away.  I think the surgery in December worked for that.  The hearing in my left ear, is still gone.  Right is more sloshy.  Had that hearing aid adjusted and I keep asking Stuart, “what’s that noise?”  and telling him to stop yelling at me.  Funny huh?  Now, which will come first, the cochlear implant of the shunt?  Each are inevitable, it’s just which one makes its requirement known first.  Of course, the shunt could be much more important for health reasons, but who knows how long the medication may work.  So much to consider, so much out of my hands.  (don’t you hate that?)

That’s all for today.  Hope everyone is enjoying the First Day of Spring.  (I don’t feel like we had a Winter.)  Everything is blooming at once, my allergies have gone mad!!

I should be saving these for next month.  : )

I just haven’t felt like it.

On By WendyIn Chronic Illness11 Comments

Normally when I’m not feeling great, I turn to my blog.  When I’m happy and want to share, I turn to my blog.  When I’m mad, I turn to my blog.  Well, you get the picture.

Lately, I just haven’t felt like it.

I’ve thought of much to say, but it all sounds like a big jumble to me.  No real coherent thought.  I’ve been happy, sad, mad, confused, in pain, sick as a friggin’ dog (where did that saying come from anyway?  Or Weak as cat pee?  that person evidently never smelled cat pee!)…see what I mean…all over the place.

I do feel I owe an update.  Today is day 12 of feeling like crap.  I’ve decided to name my Slosh Head – Alvida – after a famous female pirate.  My head feels like I’m living on a very rocky boat, I’m sure the first Alvida (often spelled Alvilda) spent many days on a rocky boat, hence the namesake.

Alvida cannot seem to get her “sea” (or in our case, very rocky land) legs.  We wooble..but unlike the Weebles we can fall down.

I had a-n-o-t-h-e-r lumbar puncture (LP) on Monday.  This time it actually appears they caught the high pressure before I had a blow out!  It was the highest it’s ever been..then Dr. Gray said something that confused me (of course that’s pretty easy to do right now), she said, that the pressure doesn’t take into account volume, and my volume should be higher right now because of the excess fluid I still have after the surgery.  So, can we trust this LP at all?  She did a little testing.  She added in 3cc’s of CSF (cerebrospinal fluid pressure), and I started to get a headache.  She started to take some out, and I started to feel better, then she took out more and I felt weird.  She took out 10cc’s all together.  (I think that includes the 3cc’s she added….again, confusion).

"Hope" for Dr. Gray - Thank you for giving so many people hope.

I made Dr. Gray a piece of art.  I’d been working on it for a while, if you’ve been on my blog Create To Heal you have seen it in progress.  I still needed to color quite a bit of it, but I finished it just in time.  She loved it!  Just gushed.  Said she was going to frame it and just went on and on.  I’m glad it made her happy.  She also said, we could come by and see her anytime, I didn’t have to be getting a hole in my back.  LOL.

While in recovery I started to feel MUCH better.  I could turn my head without getting sick, I was happy.  Then I got up to leave.  Ugh…not as good.  After we got home and I ate dinner the world began to move again…Dang-it!  But Dr. Gray said it would take some time for things to level out.  She put me on a small dose of Topamax, to see if we can keep the pressure lower, we will up the dose as needed.  Hopefully, we’ll figure this out and I’ll be able to move around soon with out triggering a full blown vertigo attack.  Not feeling like I’m on a boat would be nice, but not spinning some every single day would be a miracle right now.  12 Days!  TWELVE DAYS!  But I can handle it.  I know I can.  If it ends up that this is the way it will be I’ll figure out a way.  Perhaps I’ll need to wear a neck brace so I won’t move my head to fast?  We’ll figure out a way that I can deal with it some how, some way.  Wow, I just really surprised myself!  I haven’t been feeling the most optimistic lately.

After the coldest night I think we’ve had in a very long time (it was in the 20’s F here), we went to the library the next day.   Guess what we saw out front?

This photo was taken February 12th!

That’s all for now.

Alvida is telling me that she is not going to allow any more!

Here’s to getting my sea  legs…I hope.

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*

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.

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.