Confessions of a Chronically Ill Deaf Woman

confessions

I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.

I envy people who look sick.  It’s just hard to be as sick as I am and look completely normal most of the time.  Others have no idea what I go through.  I know on the outside I appear normal.  I know it’s hard for people to understand why I can’t do things.  Sometimes it’s hard for me to understand.  Sometimes I feel if I looked sick it would be easier.

I’ve played the sick card.  This is very hard for me to admit.  There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick.  Normally that is something that would make me sicker.  Something I might want to do, but I know if I do it I’m going to pay the price afterward.  So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place.  Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough.  I can think of one.  There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card.  Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.

When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him.  Yes when I get mad I act like a child.  “I can’t hear you, lalalala”.  I’m sure it infuriates him.  I’m acting like a child.  And at the time, I don’t care.

I’m addicted to the internet and I don’t feel that is a problem.  I am basically housebound.  I can’t leave without someone else.  I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands.  I don’t have friends close by since we moved.  Even before we moved I had very few that I saw on a regular basis.  I keep in touch with my friends through the internet.  I read, I write, I research, I email, even my TV is through the internet.  Some people may think I spend way too much time on the internet, I don’t think so.

I really don’t miss working.  If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job.  I dreaded going to work.  I don’t miss it at all.  I don’t like the fact that I can’t work.  But missing my job?  No not at all.

I care what people think.  I keep being told, “who cares what people think?”  Well I do.  Why?  I have no idea.  I don’t like this part about me, but I really care about what people think.  I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac….  Yet I don’t like to go out looking bad.  I don’t want people to think I can’t take care of myself.  I don’t want people to think my husband isn’t taking care of me.  I care what people think when they come in my house.  (as if so many people come in my house)  I care what people think when they ask me what I do and I can’t give them an answer.  I don’t “do” anything.  I even dress up a bit just to go to the doctor.  Especially my therapist.  She is a lovely woman, so put together, and I want to look all put together too.  So I actually dress up a bit to go to my therapy sessions.  How weird is that?

I often don’t know how to talk about anything other than health issues.  My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking.  But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.

Often I have no idea what someone just said to me, so I fake it.  When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad.  It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway.  Often when I’m with Stuart I just stand there and smile and let him deal with the conversation.  It’s hard on me, not being able to participate, but it’s harder to struggle through it.

I love my recliner.  I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do.  I love this chair.  I got it when I got my hip replaced, I don’t know what I did without it!  I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier.  It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.

I don’t shower of bathe regularly.  Taking a shower or bath is an ordeal.  I have a safety issue with both.  Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem.  Taking a bath is easier, but it’s much harder to get in and out of the tub.  I’ve also had vertigo start with me in the tub a few times.  I have to have someone with me when I shower or bathe.  It takes a lot of energy out of me.  I often have to lie down and rest afterward.  I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks.  No, I’m not gross, I do wash up.  But taking a full on bath, takes a lot.

Sometimes I’ll wear the same “clothes” for days.  When I don’t feel good I wear the same clothes for days.  By clothes I mean a tee and shorts or sleep pants.  I will move from the bed to my recliner and back.  Who needs to change clothes?  Truthfully, I don’t think I could if I wanted to.  But sometimes I don’t change clothes simply because it’s easier.

I’m hard to live with.  I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.

 

Are there confessions you have?  Want to share?  Do you share some of mine?  I’d love to hear!

(photo by and of W. Holcombe.  All rights reserved)

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What’s it like to have a Cochlear Implant?

me with CII got my first cochlear implant (CI) in July of 2011, and my second in September of 2013.  When I was going through that time I wrote some about it but I’ve never talked about what it’s like to live with my cochlear implants (CIs).  A friend of mine asked me a few questions about it recently.  I’m here today to answer some of those questions.

What exactly is a Cochlear Implant? – To put it simply, a Cochlear Implant is an electronic device that can help provide a sense of sound to someone who is deaf or severely hard of hearing.  Let me see if I can explain this in my own words.  There is a part that is on the outside of the head that consist of a microphone a processor and a transmitter.  There is part that is on the inside that is the stimulator and the electrode array.  Sound comes into the microphone and goes through the speech processor to the transmitter  (the microphone and processor are the parts around the ear, the transmitter is the part that is on the outside of the head – it is held on by a magnet connecting it to the receiver/stimulator).  The stimulator is in my head, between the skin and the skull.  When the sound comes in to the stimulator it is then sent to the electrode array it then send impulses to the auditory nerves.  For a better explanation please go here.   (you can see the microphone, processor and transmitter on me in the photo at the top of the post – yes mine are orange -, and in the second photo below)

Cochlear Implant

This is a photo of the receiver/stimulator and the array. The array is the wire it is what goes in the cochlea of the ear and sends impulses to the auditory nerves. The stimulator is right on the inside of my head.  The transmitter connects to the stimulator by a magnet.

cochlear implant 2

This is a photo of a microphone, processor, and transmitter. You can readily see the microphone that hooks around the ear but there is one at the top you can’t really see. Many processors have microphones that are not readily seen.

Why did you get cochlear implants? – I lost my hearing due to Meniere’s Disease.  My hearing loss happened fairly quickly.  I was diagnosed bilateral in November of 2009.  In 2010 I got hearing aids, within 3 months of having my hearing aids I couldn’t understand anything out of my left ear.  That sent me on the tract to getting my first CI. (July 2011) By the time I received my first CI, the hearing in my right ear deteriorated to the point that my hearing aid no longer worked.  It took a little while, but I soon got my second CI.(September 2013)  Why did I get cochlear implants?  because that was the only way I would be able to “hear” anything.

How does a cochlear implant work? – I’m going to quote this straight from the National Institute of Deafness and other Communication Disorders site.  “A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds so they may be detected by damaged ears. Cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.”

Do you hear the same with a cochlear implant as a you do with normal hearing? – No.  Some people can understand words and sounds immediately, other people can only hear clicks and whistles.  It is a completely different way of hearing and your brain has to be retrained.  When I was first activated I could understand a lot of words from the start, but everyone sounded like they had been sucking on helium.  A lot of Donald Duck and Mickey Mouse voices were around.  Soon my brain started to remember what certain sounds sound like and I started hearing things the way I used to, for the most part.  When I hear something I’ve never heard before things can sound very odd.  Sometimes when I meet a new person their voice will get that cartoon sound until I get used to them.  The longer you use your CIs the better you hear with them, so 10 years from now I should hear better than I do now.

Do you now hear like everyone else? or is it odd?  What is your hearing like now? – This is the big question isn’t it? What is my hearing like now?   First I’ll tell you about challenges I have that a lot of people with CIs have, then I’ll tell you about my personal challenges.

I often can’t hear when someone speaks behind me.  If there is noise in the room I have a very hard time hearing.  (the newer CI’s are better for this, even though I have a newer CI I still have a hard time)  In groups it is very hard to keep up with what everyone is saying.  I am much better at conversing one on one.  I find I it is much easier for me if the person is facing me so I can read their lips while they are talking to me.  Between the two of those I do pretty well, but put me in a crowded room, and I’m lost.  Heck, put me in a room with more than one person and I can get pretty lost.

I think I might be able to hear better if I had more practice, I’m not sure.  Most of the time I only talk with Stuart.  I talk to my doctors.  I talk with our roommate, but I have a very hard time understanding him.  His voice is deep and I simply cannot understand most of what he says.  It makes things difficult, and sad.  But for the most part I don’t see anyone else.  Since we moved I haven’t met many new people, it’s hard to get used to groups and hearing other people when I don’t have the opportunity.  However, it’s also really hard to put myself out there in those situations because I get so lost and confused.  It does make meeting new people even more challenging.

Unlike most people with cochlear implants my hearing fluctuates.  Some people with Meniere’s who get CI’s end up still having fluctuating hearing.  Normally this happens when we have vertigo, our hearing will change and we need to get our CI’s adjusted.  My hearing doesn’t fluctuate just when I have a vertigo attack it happens every day.

Let me tell you what an average day for me is like.  I’ll get up and put on my cochlear implants, at first it takes me a little bit to get used to suddenly hearing sound.  Everything sounds a bit loud.  Then things will normally calm down and my hearing is stable for a few hours, but every evening my hearing will change.  It’s hard to explain what it sounds like, it gets hollow sounding and can sound way too loud.  I’m always telling Stuart to please be quieter.    Sometimes my hearing will change throughout the day.  I will often say, “I’m having a bad hearing day.”  I’m thrilled when I can say I’m having a good hearing day.

When I take my CI’s off the world changes.  Suddenly the only thing I can hear is my tinnitus.  (When I have my CI’s on the sound of the outside world helps me to not notice my tinnitus as much.)

I don’t know sign language.  I am working on learning some, but I haven’t been able to take a class.  At times Stuart and I can only communicate by me reading his lips and the little bit of sign language we know.

What is a challenge you wouldn’t normally think about? – This one is easy, having the headpiece suddenly fly off  because I got too close to something metal.  I have a bracelet that I wear sometimes and if I put my arm up around my head the CI headpiece (the transmitter) will jump off and stick to it.  It’s kind of funny, kind of annoying.   Other times when I want to lie down the headpiece won’t stay on.  This is annoying, especially when I’m sick.  I deal with vertigo better when I can hear what is going on around me since I can’t focus on anything, but during an attack I need to lie down, this often knocks my CI off and I can’t hear anything out of one ear.

Does it hurt? – Well the surgery hurt, but it wasn’t so bad.  It is actually an out-patient surgery.  Does it hurt on a day-to-day basis?  Not really.  If the magnets that are holding the headpiece to my head are too strong it hurts, but then I can change that.  I have screws that are very close to the surface right behind my ears.  One ear is worse than the other.  Most people don’t have this problem, normally when it heals fat and cartilage form around the screws and you don’t notice them, for me the screw is right up against the skin.  Sometimes this hurts.  Sometimes my processor and glasses will rub on them.  My sun glass arms are thicker than my daily glasses and they will cause that area to hurt.  If I can lie down on it, it hurts a bit.  Other than that, no it doesn’t hurt.  If I didn’t have the screw issue I really wouldn’t even notice I have them on.

Now I just have to share the funniest thing I’ve misheard due to my hearing loss–  Once I asked Stuart what Jesus was other than seen as a prophet and son of God.  The answer I heard was, “Jesus was Jimmy Buffett”  I busted out laughing.  “Whaaat?  Jesus was Jimmy Buffett??”  What Stuart actually said was, “Jesus was a Jewish Carpenter.”  I still get the giggles when I think about Jesus being Jimmy Buffett!

Update On My treatment

dandilion flower

My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).

As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections.  However, he did send me to vestibular rehab.

I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control.  I can’t say I’m having fewer migraines but they do seem to be less intense.  It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack.  (If the vertigo is caused by MAV then  gentimiacin will not help.)  You may recall that I had seizures in February that caused me to be hospitalized.  My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures.  It appears this may have been my problem.  I’ve since stopped taking Topamax and the seizures have subsided.

The vestibular rehab is going well.  I haven’t been to a lot of sessions yet, but so far so good.  When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver.  This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me.  (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.)  After this treatment I have had very little BPPV symptoms.  On the way home from the first visit I had a bad vertigo attack that last hours.  Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out.  I still have a few sessions to go before being reevaluated.

Now, about the doctor situation.  I will be seeing a new doctor on the 22nd, next Tuesday.  It’s kind of amazing how I found this doctor.  Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday.  When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues.  I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that.  They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.

I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service.  (they will only map CI patients who were implanted by their office)  As luck would have it, her husband works for this medical group.  He is an otolaryngologist.  He is new to the office and is working to get things better there.  He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing.  He told me he would be happy to take me on as a patient, or he recommended another doctor in the group.  He just wanted me to have a good experience there.  Wow.  I decided to go to see him.  He is very willing to confer with the doctor at John Hopkins.  He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work.  I think it’s more complicated than that, but that’s a big part of it.    The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there.  Is that just a lucky thing or what?  I’m so happy I reached out to her, you never know who may be able to help.

How am I feeling about my treatment?  Good, so far.  I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections.  I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines.  I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21).  Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.

So, that’s where I’m at right now.  Very grateful everything is going so well.

dandilion puff

photos by W. Holcombe 2016 all rights reserved.

My Visit to John Hopkins

A couple of months ago I applied to be seen at the vestibular clinic at John Hopkins Hospital.  My records were sent, and an appointment was set up for December 27th, then it was moved up to December 11th. I must say, that was just fine with me.

I was scheduled to have a hearing test, and an Electonystagmography (ENG) test before seeing the doctor, but the doctor had to leave at 2pm (before my original appointment time) so he wouldn’t see the test before he left, so we asked if I could take the test at home.  You see, I had to stop any medication that might help with vertigo attacks before the Electonystagmography (ENG) test, if I didn’t have to stop these medications while out-of-town, I sure didn’t want to.  They said no problem, and I sure was glad.  I spent all of Thursday with vertigo, it was slow but it was there, I can’t imagine what it would have been like if I hadn’t been able to take my meds.  I also had an attack right before my appointment on Friday.  I had very little balance when I saw the doctor and my vision still wasn’t clear.  So he saw me when I was not doing well.  I think that’s a good thing.  How many times have you been to the doctor and all of your symptoms just magically disappear right when you get there?  That is so frustrating.

When we walked into the Outpatient Clinic it was like walking into an airport.  You checked into the front desk, we both got arm bands to prove we belonged there.  There were all kinds of signs and lines and directions, it was a bit to take in all at once.  Stuart said we were told where the elevators were (no I couldn’t hear much in there) and off we went.  When we got where we were supposed to be, I was very impressed that the check in and out areas were looped.  If you don’t have hearing aids of CI’s you won’t understand that.  If your hearing aid or CI has a telecoil setting, then the hearing loop provides a magnetic, wireless signal that is picked up by the hearing aid or CI when it is set to ‘T’ (Telecoil) setting, and the person using that setting can hear the voice right in their ear, no background noise or anything…it is really cool. So, we checked in and were told to go to the little waiting room in the back….that’s when it started to look like just a normal hospital setting.  The little waiting room, wasn’t all that little, but it wasn’t all that big either.  We were early, because I HATE to be late.  My first appointment was to get a hearing test…(snicker).  But soon a very soft spoken woman came out and said the doctor wanted to see me first, at least that is what Stuart told me she said, I had no idea.  She took my vitals, she asked for my weight and height…I got it mixed up as to which one she asked for first, because I couldn’t hear her and I was guessing.  Soon the doctor came in…..

We talked a bit about my history and he gave me some tests while in his office.  A bit of touching my finger to my nose and then to his hand, turning my hand over and over….ect. Some I could do okay, some I had trouble with.  Then he said he was sorry but needed to shake my head a bit.  I did not do well with that one.  I had to look at his nose while he shook my head.  One time when he shook my head Stuart said he saw my eyes jerk, he said it was “kinda freaky”.  The doctor asked me to stand up and I staggered a bit, he said never mind, sit down, be careful.  I guess that answered that test.

He then said he wanted me to have the hearing test and come back in to see him.  So I went out.  I still thought it was kind of funny getting a hearing test because I’m deaf.  I can hear a tiny bit in my right ear, but it is so little you may as well say, I can’t hear anything.  Soon the doctor comes to the waiting room and said, the Audiologist said that since I have cochlear implants she couldn’t give me a hearing test.  Yes, I kind of giggled inside.  Stuart told them over on the phone that I had CI’s and a hearing test was kind of unnecessary, but they said it was ordered.  Then the doctor said they could do the ENG test that I was originally scheduled for now, so he could see it.  Well, I had just taken meds to help me, since I was really sick after the test he performed.  I told him, that and how it said I wasn’t supposed to take any meds for like that for 48 hours before the test, and I’d already taken it twice that day.  He agreed the test might not be accurate under those circumstances. Oops, kinda wish I hadn’t taken my meds, but then again, I really don’t want to be so far from home when I have that test done.  I just know I’m going to be sick.

The ENG will show how much vestibular function I have left in each ear.  That’s pretty important right now…..because here’s what he thinks and the plan……

He said, it is obvious I have damaged vestibular function, it is just a question of how much, and how much in each ear.  He said he believes that, yes I have Meniere’s Disease, and Vestibular Migraines, and he said I have balance issues caused from getting my Cochlear Implants.  I noticed before, my vertigo got worse after getting my CI’s, but no one ever said that they could have caused some of it.

He said we have to treat these in different ways.  One is to get my migraines under control.  He likes that I’m seeing a Neurologist that specializes in headaches, so I’ll continue to see her and try to get the migraines more under control.  If we can’t do this, I may be taking another trip to John Hopkins to the Headache Clinic for evaluation.  The next thing he said was, I need to have vestibular rehabilitation to train my body and brain to balance without my ears.  He also said,  we need to kill my balance system in my ears.  We plan on doing this with gentamicin shots in both ears.  How much I need to have depends on the results of the test, one ear may already be dead, who knows…we just don’t know how damaged they are yet.

I will be seeing a new otolaryngolgist here in Charlotte on Wednesday, the 16th, and we will discuss all of this, and set up getting the test that the doctor at John Hopkins wants.  They will confer with each other on a treatment plan.  I guess, It will also be good getting a 3rd opinion.  The one from my doctor at Duke, the one from John Hopkins, and now let’s see what this doctor thinks.  This doctor knows I have been to John Hopkins and they will be conferring with each other.

There are a few questions I forgot to ask.  I know many of you are thinking….”You should have written them down.”  I did, really, I did.  But I wrote it on the paperwork they gave me, and I gave it to them…I didn’t have it after that….duh.  So I’m going to ask the new doctor.  It’s only a couple of things.  Nothing that would really change the plan I think.  I just want to know if they think my Meniere’s could be autoimmune, since it reacts so well when I am on steroids; and I’d like to know if they can answer why when I breathe in through my mouth, or drink anything cold or hot I feel it in my right ear.  That’s just weird.

I know I forgot to ask him these things because he was telling me things that had been thinking for a long time.  I actually asked for this treatment from my doctor.  But he wouldn’t do it.  He said it was too destructive and I could be so disabled I wouldn’t be able to do anything….ect.  The doctor at John Hopkins looked at me and said, “more disabled than you are now?”  He then asked if I had been given vestibular rehabilitation, and we told him no, that I asked for it, but my doctor had said that things fluctuated so much he didn’t think it would help.  He frowned, and said, he thought I could benefit a lot from vestibular rehab….so as I said before, we plan to do that first.   I went into the appointment with no expectations.  Actually, I expected them to tell me there was nothing they could do.  I had no real hope.  I told the doctor this, he said….No, don’t give up hope.  I explained, if I came in there thinking he was going to fix me and then he couldn’t do anything I would have fallen apart, if I came in there with no expectations, I would be thrilled if he could do anything.  He liked that.  We talked a bit more, and he insured me he would consult with my doctor here and answer any questions, and if I came back up there he would be happy to see me.  Then when I left he shook my hand and told me that it was a true honor to meet me.  That shocked me.  I told him it was so very good to meet him and thanked him profusely.  and went on my way.

A little about the trip itself…….The trip up to John Hopkins was pretty uneventful.  We stopped by Duke to pick up films that I’ve had done….you know, MRI’s, and such.   When we went through Washington, I saw the White House, the Jefferson Memorial and the National Monument in the distance.  I’ve been to Washington before and have seen those things up close, but it is still kind of magical to me.  I don’t know why.  Driving into Baltimore, it seemed so BIG.  The GPS told us to go straight when we should have gone to the right to get to our hotel and we ended up in a very sad part of town.  The buildings were mostly boarded up, yet there were a few businesses here and there.  I can’t imagine how they would ever do any business.  One place we passed there were a lot of nice cars parked on the road, and one burnt out car right in the middle of them.  Soon we made it back to our hotel.  It was just a very sad detour.

On Wednesday night…well I guess it was Thursday morning…Stuart shook me awake at 5am.  I thought, we don’t have to be anywhere, why is he waking me up.  I read his lips… FIRE!  I was awake then!!  He pointed to the alarm.  The Fire Alarm was going off.  I jumped up and put on enough to get out of the hotel…it was very hard for me to go down 3 flights of stairs!!  We were all out on the street and almost immediately there were 2 fire trucks on the scene.  No fire.  I never found out what happened.  I could not climb back up those stairs, and it took a while for them to turn the elevator back on so we had a bit of a wait.  That was fine with me.  I was very impressed that the fire department got there so fast.  The scariest part for me, if Stuart had not been in the room I never would have known there was a fire alarm going off.  I would have slept right through it.

Well, we had an adventure!  I told Stuart when we got back to the room, that with all this stress, I still hadn’t had a vertigo attack…that was amazing….so, we were moving to Baltimore.  But I spoke too soon.  Of course, I woke up with one the next day….and it lasted all day….but I spoke about that earlier in this post.

I was a bit disappointed that we didn’t get to do anything while we were there.  The one day I felt good, we wasted because 2 of my shirts didn’t get packed so I didn’t have enough clothes.  Curses.  The next day if I had felt well, we were going to do something.  We planned to go to the Aquarium, it wasn’t far from where we were staying.  However, of all the sites in Baltimore that there are to see…..after all it is home to one of my favorite poets, Edgar Allen Poe…I really wanted to see Charm City Cakes.  Yes, I wanted to go see a Bakery!  I didn’t even care if I went inside, I just wanted to see the building.  It is the bakery from the show Ace of Cakes….that isn’t on any more.

Duff Goldman

Duff Goldman – photo courtesy of Food Network

Duff Goldman started it..still owns it, has a second one in LA now.  He is often on the Food Network.  They do spectacular work, and I was just a huge fan of that show, and I just love Duff.  I could just eat him up.  I love the story behind his life, and I love his personality.   I regret that we didn’t at least drive by Charm City Cakes.  Yes, I am a goof.  I was sick, had a migraine, couldn’t focus worth a toot, had about 8 hours on the road ahead of me…and I regret that I didn’t stop by and see a bakery.  But hey, what is life without the little things?

 

 

A Few Facts About Vestibular Disorders….with comments about me.

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Top Ten Facts about Vestibular Disorders      (This list is put out by VEDA.  The comments in bold italics are by me, all about me.)

  1.  The vestibular system includes the parts of the inner ear and brain that process sensory information involved with balance.  (however, your balance is controlled by your vestibular system, your vision and your sense of touch….but mostly your vestibular system.)
  2. Over 35% of US adults aged 40 years and older (69 million Americans) have had a vestibular dysfunction at some point in their lives.  (I remember my first vertigo attack when I was 30.  However, I had balance issues long before that, most likely caused because I had severe ear infections in my teens.)
  3. Vestibular disorders can be caused by disease, injury, poisoning by drugs or chemicals, autoimmune causes, traumatic brain injury, or aging.  Many vestibular disorders occur from unexplained causes.  (We don’t know what caused mine.  *shrug*)
  4. Symptoms of vestibular disorders include dizziness, vertigo (a spinning sensation), imbalance, tinnitus (ringing in the ears), fatigue, jumping vision, nausea/vomiting, hearing loss, anxiety, and cognitive difficulties.  (I just want to say that tinnitus can be a LOT more than just “ringing” in the ears.  I rarely hear ringing.  I normally hear buzzing, banging, roaring…all kinds of noises, I know one woman who hears music….”ringing” is just an easy way to explain it.  A lot of these symptoms are easy ways to explain them.  Your vestibular system is kinda complicated.)
  5. Vestibular disorders are difficult to diagnose. It is common for a patient to consult 4 or more physicians over a period several years before receiving an accurate diagnosis.   (very sad but true.  For a long time when I had vertigo attacks the doctors had no idea what was happening, I admit I probably didn’t describe it very well.  I remember once I had to have IV fluids because I was so dehydrated, my doctor was convinced I had food poisoning.  When I was finally diagnosed with Meniere’s disease it was a fluke.   I had been to the ER because I had been throwing up for over 12 hours and the doctor there said I was having vertigo and needed to see an ENT, this was the first time I heard the word, “Meniere’s”.  I was not diagnosed correctly.  The doctor didn’t do any test on me.  I could have had a brain tumor for all he knew.  Years later after a battery of testing at Duke, it was determined that I do have Meniere’s, but I also have other vestibular disorders.)
  6. There is no “cure” for most vestibular disorders. They may be treated with medication, physical therapy, lifestyle changes (e.g. diet, exercise), surgery, or positional maneuvers.
    In most cases, patients must adapt to a host of life-altering limitations.  (That’s a huge statement…there is NO CURE for MOST vestibular disorders.  I personally have had at least some type of all of the treatments mentioned…of course they are being very broad in saying what kind of treatments they are, but I use medication, have had physical therapy, and probably will again, I have extreme lifestyle changes…you would not believe how my life has changed…. I’ve had surgery many times, and I’ve had positional maneuvers…..whew…I will probably have more treatments in the future… at least I hope so, I’d like to feel a bit better than I do now.)
  7. Vestibular disorders impact patients and their families physically, mentally, and emotionally.
    In addition to physical symptoms such as dizziness and vertigo, vestibular patients can experience poor concentration, memory, and mental fatigue. Many vestibular patients suffer from anxiety and depression due to fear of falling and the loss of their independence.   (Most people do not understand how a vestibular disorder can cause so many cognitive issues, but it does.  With Meniere’s I’m not just afraid to fall, I’m afraid of having a vertigo attack in public…. this is horrifying.  I no longer fear the loss of my independence… I’ve lost it.  I can’t drive, I can’t go out alone, I use a walker, I can’t cook (it’s too dangerous with a balance disorder), I have a very hard time picking things up off the floor, I can’t take a shower, or bath without someone near by, just in case (often someone has to help me…. I don’t talk about things like this most of the time, and I often push through a lot of things when I’m around other people, but I pay for it later.)
  8. Common vestibular disorders include benign paroxysmal positional vertigo (BPPV), Ménière’s disease, labyrinthitis, vestibular neuritis, and vestibular migraine.  (personally I have 3 of the vestibular disorders mentioned here.  I have BPPV, Meniere’s Disease, and vestibular migraines.  I also have an unknown vestibular disorder….one that is causing me a lot of problems but the symptoms do not fit in with the other defined disorders.  I will hopefully be going to John Hopkins in the not too distant future to try to find out what this unknown vestibular disorder is and maybe how we can treat it.)
  9. In the US, medical care for patients with chronic balance disorders exceeds $1 billion per year.  (I have to admit, I always wonder where they get these numbers and what they include.   I have to say the treatment of my vestibular disorders has been extreme.  We are very lucky we have insurance.  Of course, insurance doesn’t cover everything.   To give an example of just how much one thing cost…. I had a vestibular illness take my hearing and cause me to get cochlear implants, they cost over $100,000 each.  That’s a lot of money.  Of course, most people with vestibular illnesses do not lose their hearing.  I’m a bit rare.  heh… but aren’t I always *wink*)
  10. The Vestibular Disorders Association (VEDA) is the largest patient organization providing information, support, and advocacy for vestibular patients worldwide.  (VEDA has been a go to place for me to find information.  If you want to know more about a certain vestibular disorder, I suggest going to their website. http://www.vestibular.org)

Where ya been?

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vuible.com

When I’ve been away from blogging for a bit it’s really hard to get started again.

I keep thinking…where do I start?

I’ll have a good day and I will start to write, and get overwhelmed….well I don’t want to mess up a good day, now do I?

Then I’ll have a string of bad days…oh yeah…we know those….and I think, I should blog about those, but I don’t want to sound like a broken record.  After the last post I put out, I thought, Gosh…same crap, different day.  Not completely, no two days are ever completely alike, but you get my drift.  Sometimes people forget a Chronic Illness is called Chronic for a reason.  For me, I do understand that….I know my illnesses are not going away, maybe they will get better, maybe worse…. but going away…don’t think so.  I do not, however, completely understand it when they change.  And lately, they have changed, a lot.  Do I want to talk about all of that….well I have talked about some of it, and I’ll probably mention more of it…some I’ll probably mention later….oh you know me, I talk about everything.  It will all come out eventually.

Mostly my moods have been, well, in the crapper.  Hubby and I and the furry babies to have fun.  Laughter is the greatest isn’t it?  But the migraines and vertigo…..the fear….the fear…it just doesn’t go away.  I’ve had so much pain and vertigo over the last few months, I live in constant fear.  and, pardon the pun….but that scares me.

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healthshire.com

I know you all want to hear about my complete melt down where I felt like I should have been committed…I now understand what they mean when they refer to people having a “nervous breakdown”.   But really, do you really want to hear about that?  Tell me if you do, and I’ll tell you about it…just know I’m OK.  I didn’t hurt me or anyone else.  I just kinda flipped out…yelled, screamed, cried…all at the same time….and did it some more.  Then I was exhausted…slept…and cried a lot the next day too…..

I can tell you a few things that I’m pretty darn sure contributed to it….maybe you won’t worry so much after that.

  1. I was on a certain medication for my migraines, it is also an antidepressant.  It wasn’t working, so I went off of it.  I was not on high enough of a dose that I should have needed to taper off of it.  I think that was wrong.  I crashed right after I stopped taking this drug.
  2. I have a lot of crap going on.  Still having very intense migraines…A LOT.  Like almost every single day.  And vertigo, the same thing.  To the point, I hate leaving the house.  Did I mention fear??  I have been leaving more, and most of the time I have a vertigo attack when we are out.  I’m starting to get less and less freaked out by this.  Just get me in the car, and I’ll deal.  I’ll talk more about my vertigo attacks sometime in the near future, they have changed a bit, and my treatment for them has changed a bit.  I should share some of that.  However, I’m having these spins when I turn over in bed, it scares the crap out of me.  I’m asleep, I wake up a little…kinda…go to turn over and BAM..vertigo!  It doesn’t last long, but it is terrifying.  Sometimes it does last…so I never really know, but most of the time, it’s just a few seconds.  There’s other stuff too.  I’ll tell more later.  It’s kinda interesting if you’re into that kinda thing….you know, sadistic.
  3. Menopause.  Yeah, there are things about this that no one told me….why?  Why didn’t my doctor tell me more about it?  Do people just assume your mother is going to tell you everything?  What if you don’t have one?  Well this is a matter for a whole other post in itself.  Yep…I think it’s time we dish a little bit about the big M.  And I actually don’t have a lot of symptoms…golly, I sure feel for those ladies out there who have it bad!  But one thing I am having recently, every month I feel like I’m going through my period.  The mood swings…really bad, cramps…all the goodies, just no blood.  Yes I said it!  In October it will be 2 years since I’ve had a period, and this starts now?  Pfft!

So….there ya go…..those things led to a melt down.  “I’m sick of being disabled at 52!”  and much much more!!    I even hated my husband because he could take a walk and I couldn’t.  Oh yeah, I was completely irrational, and feeling sorry for myself.  No….I have been so ANGRY I have found it hard to live in my own brain.  Who wants to live with those kind of thoughts all the time?  Snarky, oh way beyond…ew.

I’m trying hard to pull myself out of it.  And you know, I do a pretty good job of it.  But outside factors have been eating away at my normal brain.  This is when I decided to try what a friend of mine used to say she did, “Fake it ’til you make it.”  She said she would fake the feeling good and put on a positive front until she really felt that way, and it often worked.  So I decided to do that.  It kinda worked.  I had some good times during it.  But I still had that …urgh…underneath.   *umph*  Still it did help a bit.

I combined that with a lot of deep breathing.  *Ahh*

11863487_10207136285306738_4886211835444465218_nAnd trying to do more mindfulness…but it’s darn hard when your head is hovering around a 7 every day, spiking to a 9 many days.  And the vertigo has decided it’s going to start doing this new funky thing where I suddenly feel like I’m falling down an elevator shaft…just free falling!!!  What the heck???   I found myself clutching to Stuart and screaming….”I’m falling!!!  I’M FALLING!!!  PLEASE DON’T LET ME FALL!”  Yes my brain knew I wasn’t really falling….or maybe it didn’t, it sure wasn’t telling me I wasn’t…..I sure felt like I was falling into an abyss.  That is one freaky thing, I tell you.  When they say people aren’t afraid of heights, they are afraid of falling…well duh!  I’ve always been afraid of heights…well guess what, that terror comes out when I get this weird vertigo.   It has happened a few more times and I’m better with it now (kinda), I can’t imagine what I will do if it happens and Stuart isn’t with me….because it is freaky….but less freaky than the first time (um…kinda).  My brain is beginning to wrap the truth around the situation that I really am not falling, no matter what my vestibular system is telling it.  *good brain, I knew you were one smart cookie*

Now that makes it kinda scary to go out in public.  Can you imagine if I were in a store and suddenly I start screaming, “I’M FALLING!”  Oh yeah….Call the cops, this chick is doing acid!

Soooo, any who, I’m completely losing my train of thought and going all over the place aren’t I?

See this is what happens when I haven’t posted in a long time.  I think of all these things I want to tell you, and things just start tumbling out.

Maybe I should just stop for the day.  If I don’t I might end up putting this down and then I’ll not get it posted and you will miss me.  You do miss me don’t you?   Yeah I know, I’m a little cheeky today.  *wink*

Chonic Pain/Ilness Photography 2015 Project Week 3

This is the final week of the Chronic Pain and Illness Photography Project I have been participating in for the past 3 weeks.  Facilitator  Stephanie Blumensaat did a marvelous job putting this project together and keeping the group running smoothly.  What a wonderful group of creative people who were willing to share so much of their art, their lives and their souls.  Simply amazing.  Stephanie has a blog, Chronic Pain Life, that you just might want to check out.  She will be putting together future projects that some of you might want to participate in, I know I will. 

I hope you enjoy these photos and insights into me….

Day 15 – Gratitude. – posting a day late

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I have much to be grateful for every day, yesterday was no exception, but it was a very rough day, things happening all around me that I could not help with or do anything about. (my dog had an emergency trip to the vet and I couldn’t move my head without vomiting to help…it was a very hard day.) Yesterday was filled with rapid vertigo. Yesterday I had a very long, rough day with vertigo. I am very grateful for the bucket I could throw up in if needed….and all the medication I had that made me not have to throw up so much. (I’m most thankful for my darling husband for taking care of our furry baby…she’s fine…and taking care of me.)
Truthfully, I’m very grateful the day is over.
Day 16 – Dreams

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 One dream I always had was to go to Disney Land, not Disney World, I wanted to go to the original.

Right before I got very sick, I was able to go.  This is the land of dreams….a place where dreams come true…..the photo is the refection of the castle.  I think this photo is very symbolic of my dreams today, they are very vivid and beautiful, a little wavy, and sometimes a bit upside down….that doesn’t mean I’ve stopped dreaming.
I still have many dreams, some are short term, some are long term, some are very attainable, some probably aren’t.  And that’s OK.  I think healthy people have the same kind of dreams….not all come true.

 

 Day 17 – Identity
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 The image I chose for this prompt is a mask I made….the outside shows how most of the world sees me….the invisible illness, my cheery exterior…is that part of my identity….yes, I think so. The inside of the mask shows how I feel about things and how I feel about me. I think this is a good representation of my identity.

This prompt was very hard for me. If I were able to really get up and out and create a new photograph for this prompt I would have done something different.

How do I Identify myself now? I’m still Wendy.

 Day 18 – Know This
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 Know This….You are not your illness/pain.
Your illness and pain are a part of you but it is not YOU.
Do not lose yourself.
Day 19 – Spirit
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Showing my spiritual side.  I hope you enjoy this photo as much as I do.
I took the selfie yesterday and manipulated it in Photoshop to show my spiritual side.
I study Buddhism,
I follow a mindfulness way of living.
This has made a huge difference in my life, and how I deal with chronic illnesses.
Namaste
Day 20 – Goals
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Take more risk…..overcome fear….first step!….walk out the front door…..

My goals….get out more.
We moved to a new place in August of last year. During the move my hip started to hurt. I haven’t been able to hardly walk since the move.  I had hip replacement surgery on the 14th.  I’m starting to walk again, that is going very well.  However, I’ve had vertigo attacks every day for over 30 days.  Fear rules my life. 
I started to get in the shower today, and was then going to go to the store with my husband.  A first outing since my surgery, other than to the doctor….
right before I got in the shower I was on the computer and the world started to tilt……suddenly it started to spin, violently…for 5 hours I was spinning with violent vertigo, so very, very sick!!!
Then I slept for 2 hours and I still feel like I have no balance and my head is mush.
Deep Breath!!!
This is a HUGE GOAL!
Get out that door!
Expand my life!
I know I can do it!
if not…my Goal is to be perfectly happy, in the life I have, just the way it is.

Day 21 – Invisible

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Invisible Illness and me

“You look so good!”
Just beneath the surface
no one can see
the cracks….
the cracks…..

Day 22 – Music  (bonus prompt)

As most of you may know, I’m deaf. My chronic illness took my hearing. I haven’t been deaf long, and music is still in my head and I still sing and love music…I just can’t listen to it. (I have Cochlear Implants and can hear some music but not like I used to.  Hopefully, I will be able to hear it better in the future, but for now, not so much.)

When I relax I often hum, when I’m up I often sing, my husband and I often make up silly songs and laugh…..the silly songs are wonderful, they make me feel normal, and keep up my spirits. Music can be very therapeutic.

Today I wanted to share something different with you.
A few years ago, right before I lost all of my hearing I sat down with a friend of mine who is a sound engineer and he did a pretty good recording of what my tinnitus sounds like. These are the sounds I hear all the time. I don’t hear the worst of it all the time, but I do hear some of these all the time.

One day recently I suddenly didn’t hear anything and it scared me. I felt completely alone and was terrified.  It didn’t last long. These sounds can drive me crazy at times, but they can also be very soothing.

This is my music….my Sounds of Silence.

Day 23 – Art  (bonus prompt)

art chronic illness

I use my art to help me with my chronic illness in many ways.
Here you will see where I have three expressions of me.
Silly loving Me.
Chronic Pain Me.
Natural, Strong Me.

I try to create something every day….drawing, writing, photography……anything creative…..
My art helps me heal, even if I’m just doodling, creating heals my soul.

(sometimes when I can’t voice my pain, I can show it in my art)

The Chronic Pain and Illness Photography Project is over now.  I’ll be returning to my regular scheduled programming.  🙂

I’m sure my regular readers are curious about my hip replacement surgery recovery.  I’ll give you a thorough update in the next post….here’s a little spoiler….my hip is doing GREAT!

See you soon.  I’m off to Duke for visits to my doctors tomorrow, and the next day, and the next day…..  Yay!!