Why don’t they listen?

I read about this a lot, and I wonder about it myself….when we go places, especially to the doctor and we tell the staff that we need special attention to be understood, or to understand….or to walk, ect…  Why do we have to say it again, and again, and again!

image from www.someecards.com
image from http://www.someecards.com

Why don’t they listen to what we say?  It has always bothered me, even before I became as ill as I am, that first you would fill out all the paperwork stating why you are at the doctor’s office, then you have to go over it with the nurse, then again with the doctor….why don’t they just communicate?  Do they think I’m lying?  “If we ask her the same questions over and over we might get different answers.”  Just talk to each other, and listen to your patients, please.

Now that I have issues that must be addressed for me to get what I need from a doctor’s visit, it’s worse.  I try to be very understanding about people forgetting that I can’t hear, or that I have balance issues and use a walker, therefore I walk very slowly.  I realize that humans take a long time to develop habits, and most nurses and staff I see change a lot, or I don’t go to their office much, under these circumstances I do my best to pleasantly remind them, over and over, that “I can’t hear you, I need you to look me in the face so I can read your lips, and I need you to talk slowly.”  They will say they understand, but then they will look at their computer and talk instead of talking to me.  Often I will just act like they said nothing to me.  My husband will turn and tell me what they said and I will answer, “Oh, I noticed you were speaking but since you weren’t speaking to me I thought you were talking to my husband.”  I get a blank look, then a light bulb….OH yeah!  She’s deaf.  Then they do it right for a question or two, then it goes back to talking where I can not understand.  A friend of mine who writes at: Another Boomer’s Blog, says she wants a shirt that says DEAF on the front and STILL DEAF on the back!  Yep, Still Deaf.  She also has some great posts about this subject, you should really check her out, especially if you have hearing issues.

As I said, I do understand that most people are not used to dealing with people like me.  They aren’t used to dealing with the deaf, and they aren’t used to dealing with someone who has to walk slow with a walker, or suddenly sit down because of balance issues.  Yes, I have nurses try to show me to my room and just take off and leave me.  I just say, “I’ll get there sometime.”  If they turn a corner, I sometimes just stop.  When they return, I simply tell them, “I didn’t know which way to go, I couldn’t see you.”  I really don’t mean to be rude, and I am compassionate, they are used to doing their job one way, and I’m asking them to change.  However, what happened to customer service, why are people not mindful of what they are doing….everything they are doing?  If a patient comes in, you pay attention to their needs, PERIOD.  Just as you should for any person you meet. (you open a door for someone who needs it, you pick up something a child dropped…..you help people out when you see it, why doesn’t this happen all the time?  Or am I just assuming most people would treat strangers like that?)  We need to pay attention to others.  Show love and compassion, why do people often have to be the “squeaky wheel” before they are paid any attention to?

At my otologist’s office I do not accept that the staff is not trained to deal with people who are Hard of Hearing or Deaf.  When I check in, they are looking at their computer….these same people have been working with me for over 3 years, I normally check in with the same person, he knows my name, he knows my husband’s name, but he is not trained to deal with a deaf person.  He does finally understand, and he moves his mouth more clearly than the other front staff, that’s why I try to check or out with him.  But why are they not trained better?  I have one nurse who normally works with my doctor, she is a dear sweet person.  She really cares.  Sometimes she will slip up and speak while not looking at me, but she usually catches it and quickly changes.  Also, she will come and get me in the waiting room, the other nurse that calls me back occasionally, just calls out my name.  I can’t hear her!  Why does it not say in big red letters on my paperwork, DEAF….and any other instructions they may need.  Why?

I had a test performed a couple of years ago at a different hospital.  I had to check in and I was shocked at how trained the check in person was.  I don’t know if everyone there was as great as she was, but she said they all had training on how to deal with certain situations.  She spoke clearly, looked at me, marked it on my chart that I could not hear and would need assistance.  My husband was with me, but that didn’t make a difference, they treated me like I was the patient and I had needs, they didn’t treat me like my husband was supposed to pick up the slack for me.  This hospital assigned a volunteer to walk me to my testing area, to stay with me until I was called back, she escorted me to the room I was to be in and explained to the person performing the tests about the situation.  You could have blown me over with a feather!

So now, I ask why?  Why don’t people listen to us?  (no matter what your special need)  Why aren’t more people trained like the staff at the other hospital I went to?  Why aren’t we all more compassionate towards others?

Yes, people should understand when we need special arrangements so we can be less disabled and more independent.  Not only that, but we need to get the same care any other person would, that is our right.

On the other hand, we also need to give people some slack, no I don’t mean the whole rope…just help them learn.  Think about the person who is treating you this way, how have they been trained?  How hard would it be for you if you were in their place to suddenly have to do everything different from you are used to?  What if this person has just dealt with an emergency and they are still shaken up but trying to do their job without letting you see it?  There are just so many things that can contribute to why someone isn’t understanding about what we are going through.  Don’t get upset….at least not at first….realize, it’s not about you, it’s the fact that they are human and humans are not used to change, and we simply don’t get it all of the time.  Try to pleasantly remind them what you need.

My husband used to always step in and try to make things right, but I want to understand the doctor and nurses myself, I don’t want to need him to always be there….plus, I’m not sure he always remembers everything they say.  So I started telling him to be quiet unless he was asked something, or if he needed to ask or input something (he is my caregiver after all), but if he talks he will have to stand by the doctor so both of them can face me, so I can hear both of them at the same time.  No more him beside me, and the doctor in front of me. There are types of interpreters that I can request to help me at the hospital or doctor’s office, I will explain these in a later post, and why I haven’t taken advantage of them.

I have found that simply not answering, or acting like I’m lost because I can’t keep up, has helped.  Just asking again doesn’t seem to do it most of the time, but if you make it harder for the person who is learning how to deal with you, then they are more likely to change their ways faster.

Of course, some people will never learn.

and often the people closest to us are the hardest people to understand a lot of this….but that’s for another post.

A little update….

I wanted to let you all know I’m OK, I know I haven’t been around for a while.

I have had some challenges – emotional, physical, and mental.

Wendy - photo manipulated by W. Holcombe
Wendy – photo manipulated by W. Holcombe

First, the trip to Las Vegas, was postponed and we have no idea if it will be rescheduled. This doesn’t give me a good feeling about the company, and that’s sad, because I think Stuart would have liked that job, and we could have saved a lot of money living there. But hubby has had other interviews since then, and it looks like he will have multiple offers…I’m just not sure if he will be happy at these jobs, but right now we don’t have the luxury of him being able to be that picky, and that worries me. We also won’t be able to save as much money as we would have at the job in Las Vegas. (about the same salaries, but in places where the cost of living is higher)

The week of Thanksgiving my father was diagnosed with liver cancer. He has been sent to many

My Father (he's a bit thinner now)
My Father (he’s a bit thinner now)

doctors for many tests, and still he must have more test to determine if the cancer has spread. If it hasn’t the cancer may be operable. It appears to be contained at the moment. I feel guilty I can’t help, and I feel guilty that I would be afraid to help if I was able. I took care of my mother when she had cancer, it was the most difficult thing I’ve done, and the most rewarding. But my mother and I were very close, my father and I have always had a strained relationship. Don’t get me wrong, I love him, we simply have different outlooks on things, and I don’t see him being the easiest person to care for. I feel like that makes me such a bad person. However, I also know, if I was able, I would swallow my fears and help in any way I could. Right now I am hoping he is not in pain, and will not have to go through the horrors of advanced cancer. His birthday is tomorrow, he will be 81. I don’t think he looks it. My father has a full head of the most beautiful white hair. Well enough about that for now. I’ll know more soon.

My asthma has been acting up horribly. I start coughing and wheezing with just the tiniest bit of exertion, and just forget about laughing, that will send me into an asthma attack faster than anything. I almost had to have an emergency visit because of it, but a double treatment with the nebulizer calmed things down. I was doing better for a while, but it’s sad to think that I have coughed every day for over a year. I have also been having sinus drainage, this has not helped the cough, and sore throat (from coughing), but I can tell the difference in the cough. The production is different…let’s just leave it at that. My whole body hurts from coughing.

I haven’t been able to make it to the audiologist to have my CI adjusted, so people are still sounding a bit like they have huffed helium. I’m getting awful sound headaches after wearing my CI’s for just a short amount of time if there is more than one noise in the room. (like the TV and Stuart talking). But I’m pleased to say, I’m still hearing more music than I have in years!!

I’m having some pretty bad headaches/migraines lately. I’m not sure the Botox really helped much this go around, and that makes me pretty darn sad. However, I think a lot of it is my Intracranial Hypertension. I wake up with a horrendous headache almost every morning. Another major trigger, is a deviation in sleep pattern, and I can tell you, my sleep pattern simply doesn’t exist! I am not sleeping well. Some days it’s because I cough all night. Some days I don’t know what it is. The other night I felt like things were biting me….like little no-see-ums. I drove me crazy. So sleep is erratic, and that’s a major trigger for my migraines and vertigo. Yes, that’s acting up too. I keep feeling like I’m on a boat, not a great feeling.

I’ve noticed I have pretty severe social anxiety. I do not want to go anywhere. I don’t want to be around people, especially people I knew before all this started and I haven’t seen much of them (if I’ve seen them at all) since then. I don’t want people to see that I’ve gained so much weight. I don’t want to be in a situation where I’m lost because I can’t hear. I’m terrified to have an attack in front of people. I feel I have so many phobias now I live in fear. The only places I’ve been since we have returned from Tucson is to the doctors, and to a couple of restaurants (this took a lot of courage for me, and we had to go on off times so the restaurant would not be crowded). Every time we go out, even to the doctor’s offices, I get so worked up I have to come home and rest. (all my spoons are gone!)
I don’t feel like anyone understands me. I wish I had some local friends with chronic illnesses that felt well enough to visit. I think part of this started because I can no longer drive, so I can’t go anywhere by myself, this puts me in the mind set that I shouldn’t be out. Or maybe I’m just trying to justify the phobias a bit more. It’s not good to be isolated, I know, but I’m really scared, and often I get so sick before going out that I simply can’t go. You can’t imagine how many doctor appointments I’ve had to reschedule.

On the other hand, there are days I think I can do things I used to do, so I try…and usually fail miserably. This doesn’t help my self confidence about going out.

I think the title of this blog post is wrong. This turned out to be much more than a little update, and I’m cutting it short!

I’ll be back soon. I have much to share. Plus photos of my new CI’s.

What’s up and on my mind…a Free Write…

Please note…I’m just going to write and not pay too much attention to grammar or spelling or anything like that, I’m not going to re-read because I don’t want to filter what comes out.  This is an experiment, something I sometimes do in my journal….let’s see what comes to the surface….

Acceptance is not the same as giving up, but if I’m not careful it can slip into that.  I’ve accepted my illnesses, especially Meniere’s with hearing loss, for a long while now, and I’m really ok with it.  I realize things aren’t going to get much better, and my not get any better….now is that giving up?  not saying I’m OK with it, but saying it won’t get better?  When my husband was worried because I had been feeling worse for a while he wanted me to think about going to the doctor and he said, “I just want you to get better.”  I got so mad and upset.  What?  Get better?  What delusional state are you living in?  Do you really think I’m going to get better???  I felt like he didn’t understand….then I realized…after a long discussion that he meant he wanted me to feel better than I had been for the past month, he felt something new was wrong and wanted me to check it out.  Then I thought….could I get better?  Have I given up?  and decided, yes, to a certain extent I had given up.  I was so determined to accept my life as it was, I had given up that it could be better.  Maybe the hearing can’t get better….well, the doctor has told me that much.  And possible the vertigo will never get better….but who knows for sure, I accepted my fate.  I’ve also accepted living in pain.  Hip pain, pelvic pain, Vaginismus, neck pain, arthritis pain….and my other illnesses….I accepted my fate, I’d live with these forever, but really, do I have to?  Yes, I’ve put these issues on the back burner because the Meniere’s, Hearing loss, and Migraines have taken over my life, but as I’ve found that my Migraines can get  better, I can hear better (thanks to the computers in my head) maybe not the same or as well as i once heard, but I can hear….why should I not believe some of my other issues can be helped.  No, I’d given up.  I’d given up on having a normal sex life, given up on being able to walk for any distance without being in horrible pain, given up on so much….  I feel better that I’ve accepted the things I cannot change, but I’m ticked off at myself for giving up on the things I could.  This has changed!!  I’m not giving up on getting better…the things that can get better….I’m not giving up on me.

I had a realization the other night.  I’ve been having full blown panic attacks lately…yes, feeling like I can’t breathe, my chest tightening….everything.  I realize most of these have been triggered by the loss of income in the family, then me being denied my disability claim, and I’m still mourning the loss of Sandy.  (yes, it’s been over a year and an half)  Losing a friend who was so close to me for 19 years has taken it’s toll on me.  I can honestly say I have not grieved for anyone more than Sandy except for my mother.  Maybe it’s because of everything else that has happened in the past couple of years, everything just building up on it…but I don’t think so…my Sandy girl was just so special.

I HEARD MUSIC!!  Yes, that’s right!  I actually heard music for the first time in at least 3 years!  Stuart was out of town for a job interview, and I was watching a movie, they started playing Credence Clearwater Revival’s Have You Ever Seen The Rain?  And I actually heard it!  I understood the words, I heard the music!!!  This new CI likes music.  I still can’t understand many spoken words on TV, but I heard music!  I didn’t realize I missed it so much.

Well, I think that’s all for now.  I’ve been having a hard time keeping my CSF pressure stable, and today is a bad day.  My doctor raised my dosage, and I need to take my meds.  I also have to see a neuro-opthomologist.  (Yes another thing I had accepted, and felt like it wouldn’t get better, I know it won’t go away, but hopefully, it will get better)

My asthma symptoms were much better but not great, my doctor added another medication, and now I’m much worse.  Bah!  Hoping this will get better.

Oh, Stuart’s interview in Las Vegas went well.  We are going to go look around soon and then he will make a decision.  Lot’s to do…well, not as much as I thought, they said they will pay for the move.  : )  But selling the house when we aren’t here, that is a scary thing….at least to me.

Keep meaning to take pictures of my new Cochlear Implants…I want to take a photo of the new beside the old, so you can see the difference.  It’s amazing how much it changed in just one year….but I don’t think it will change that drastically again for a while.

More soon….thanks for putting up with my babbling.  AT least this has some coherent thoughts some of my journal free writing doesn’t.

Learning how to hear….again.

I know, I got my processors on Halloween, and I’m just now writing.  What took me so long???  I wanted a picture.  But I still don’t have one.  Sorry.  I promise I will soon.

Here’s a link to a page all about my new processors if you are interested. http://www.advancedbionics.com/com/en/naida_ci_q70.html

Here's a photo from the Advanced Bionics site. My Naida processor is orange, not white.
Here’s a photo from the Advanced Bionics site. My Naida processor is orange, not white.

So far I’m pleased with these, but I have a long way to go with the right ear.  Presently everything sounds a bit high-pitched, or underwater.  When she first turned it on people sounded like Charlie Brown’s teacher, but I could understand some of the words.  I also find that most people sound like they have a very southern accent.  People whom I know do not have one, people who may not have ever been in the south!

I haven’t really started auditory therapy yet, mostly I’ve just been wearing the new processor every day, trying to get used to how it works, and simply hearing something on the right side. I’ve  been VERY tired lately.  I know it’s to be expected with the new CI, but exhaustion is a bit much.  I’m also having headaches, my headaches have been reduced so much since I’ve been getting the Botox shots for migraines, it’s difficult when I have one every day to the extreme I’ve been having.

photo from medicinenet.com balance disorders slide show.
photo from medicinenet.com balance disorders slide show.

The vertigo has been pretty predictable lately, every evening I normally have at least a small attack, and often more than one different times in the day.  I’m handling the vertigo well, but it’s so dang annoying, and frankly it’s starting to get a bit boring.  When it’s going on all I can do is focus on one spot, often with one eye closed, and tell myself it’s not real, all while keeping my breathing deep and steady….after a while it gets boring.  Never thought I’d say that about a vertigo attack, but the attacks I’ve been having recently are not the horrible fast spinning kind that last for hours.  Sometimes I do wonder if they would be if I didn’t get the meds in me fast and start this meditation type routine that I’ve come up with.  One day last week I had very fast vertigo I couldn’t focus at all, still I calmed myself down.  It has helped so much to tell myself, “This is not real. You are not moving, This is not real.”  But everyone has different ways to cope, and some may not be able to do this.  I know I would not have been able to just a year or so ago.

I realized something the other day….I gave up.  My husband was talking to me about things that have been going on with me lately and how we needed to talk to the doctor about it and how he wanted me to feel better.  He qualified that he knows it will never go away, but it used to be better.  I shut down.  I actually bothered me to hear he wanted me better.  Then I realized it was because I didn’t believe I would get better.  Ever.  I’ve gotten tired of asking doctors about things and hearing, “I wish there was more we could do”.  I didn’t want to hear that again, so I gave up.  This sounds odd after hearing how I handle my vertigo so much better, but I don’t believe the vertigo will get better.  I used to.

Now I’m in this realization mode, and fighting with myself.  I know I can’t give up!  I have a life.  I do want to get better.  Some of my illnesses may not get better, but I know some things can.  I KNOW this. But with the loss of income, and everything else, I have put myself last….and feel guilty every time we have to spend money on me….so I gave up.  I didn’t want my illnesses to sap all of our funds and energy.  It could get better, but it may not, and I got to the point where I just didn’t want to have my hopes shattered again, especially if it was going to take more of money, simply to be told it won’t get better.  As I write this and think more and more about it, perhaps I never gave up, perhaps I felt I needed to put me on hold.  The situation we are in right now is very stressful and taking much out of both of us.  I do not feel comfortable concentrating on me, I need to concentrate on us.  (this does not mean I’m being negligent about my health, if there is something I really need to see the doctor for, I will go.)

A realtor just left the house.  Yes, it’s time to sell.  I’m afraid we’re going to lose money on the house.  The market has come back a lot in this area, but some houses in our neighborhood sold for so little, it is going to cause our selling price to be greatly reduced.  No matter where Stuart gets a job we want to downsize, hopefully, we won’t have to wonder about our future much longer.  Another phone interview for my hubby in the morning…for a job in Las Vegas.  I cannot imagine living in Las Vegas. I wonder if they have decent doctors.  : )

I realize now that I’m rambling.  Yes, I do that when I’m nervous.  I’m still grateful for so much….our life may hold many questions right now, but it’s a mystery…soon to be an adventure, and I’m sure we’ll be happy with how things turn out.  We’ll be together, and that’s all that counts.

Short chat….Yesterday, Today, Tomorrow.

I don’t have the stamina to be on the computer for long today so we’ll have to make this chat a short one.  Go ahead, pour yourself a cup of tea, grab a biscuit (cookie) and let’s have a talk shall we?

Oh wouldn’t it be grand to meet in a coffee house, or even my house and have a beverage and just chat, like I used to with friends…go out to lunch….play with their kids…go shopping…ect.  But that was my yesterday.  Do I want that life back?  No.  I want to do some of the things I used to, but I like me more now.  I know me better, and I like me more.  I used to speak and feel I had such conviction about something, then I’d talk with a different friend and find I didn’t feel the same when I was with them.  I would get caught up in the gossip chain, or maybe even start one, I was moody, people would hurt me without knowing it….or maybe they did, doesn’t matter.  I took too much to heart, and really didn’t know myself well enough to have a true friendship.  At least I feel that way now, after all, there isn’t really anyone out their any more.  And I’m sorry, but Facebook does not a friend make…not without a lot of effort off Facebook too.  But that was many yesterdays ago.

Oh boy, already not a short chat.  Guess I needed to have a heart to heart. 

Just about me…..I’ve had a LOT of severe disequilibrium and minor vertigo attacks.  By a LOT, it means I’m feeling disequilibrium most of the time, unless I’m very, very still.  The vertigo, pretty much every day, often more than once.  But if I can get the Valium and Phenergan in fast the vertigo attacks don’t last long.  I told Stuart I feel like everything is so surreal.  He didn’t understand, maybe one of you will.  The world starts to move and my brain seems to slow down.

Last Thursday, I was excited about getting my Cochlear Implant processors and getting activated.  I got up and started to get ready.  I brushed my hair, and started to get dressed.  I put on one article of clothing, and turned around too fast.  I did a nice twirl in the room and tried to get close to the wall or bed, but I knew if I fell toward the bed from my distance I’d hit the foot of the bed hard.  So I turned and hit the floor, twisted my left wrist a little, kind of did a flip and BAM!  Flat on my back!  First thoughts, “Stupid! I know better!” “Ouch! My head hurts!”  Then Stuart rushed in.  “I fall down” (sad face)  He agreed I fell down.  He asked to help me up, I told him my head hurt and when I tried to move it my neck hurt….I thought I’d just lie there for a bit.  He was cooking breakfast so I shooed him away so he wouldn’t burn my breakfast. (smile, I just didn’t want to worry him too much and needed time to check things out).  I rolled over, and climbed carefully back on the bed.  I was so sore, already.  I knew I couldn’t go to the audiologist to get my processors, the appointment takes about 3 hours, no way could I go and be a good patient.  So we had to postpone……AGAIN.  So, today I’m recovering from Whiplash!

Tomorrow, I have my rescheduled appointment with the Cochlear Implant audiologist.  This is actually an administration day for her, but she wanted to get me in as soon as she could.  (how sweet is that?)  Barring no strange incidents, or my normal horrors, I will be getting my bright orange processors tomorrow!  Then I’ll hand out candy for Trick-or-Treaters.  I hope I have the energy, hubby will be in class.  Halloween is my favorite holiday, so good things will happy, I just know it!!

There it is my short chat for today.

Perhaps next time we can have cake.  (gluten-free, of course…really I make a really good cake!)

PS.  I just read this post and realized it only pointed out the troubles I’ve been having, there is much more to a day than that!  There is much I’m grateful for, and some wonders I’ve accomplished.  I’ve been going down stairs almost every day!!  After a doctor’s appointment I went out to eat with my husband!  I’ve been reading a lot and have enjoyed several books I found free on Amazon for the Kindle that I normally wouldn’t have read.  I’m sooooo thankful that Stuart was able to fix my Kindle!  I missed it so much when it wasn’t working.

There is much more…oh like a bath all by myself!  A lot of deep breathes and positive talks to do that one, of course I had vertigo within a couple of hours, but not in the tub!  Victory!!!

Just wanted to end on a more positive note, after all, these are the things I think more about each day.  The rest is just stuff.  I would compare it to having a job that takes up so much of my time and I don’t enjoy it, but it’s stuff that has to be done.  Then there is the rest of my life.  Walking up and down the stairs one foot at a time, with no help!  Cuddling with my hubby!  Writing letters.  Having heart to heart “talks” with my friends…..amazing how I haven’t actually met most of these people I consider my dearest friends.

I love you friends!

 

Cochlear Implant #2…a short update

I haven’t been on the computer much since my surgery.  I simply do not feel well shortly after I get on, I get all hot and dizzy…so no computer for me.  (please note, I didn’t read this after I wrote it, I am just too tired, please forgive any strangeness, grammatical errors, or anything that is just wrong.)

However, I did want to update all as to my recovery.

Incision  the Day after surgery,
Day after surgery,  Sorry it’s not cleaned up more, but I hubby just took this picture to show me, and then we forgot to take another one.

Had the Cochlear Implant surgery on the 25th.  The incision looks great.  It still hurts a bit, not terribly bad, but annoying (mostly it’s just itching now!).  The tinnitus has been going Crazy!!  As I mentioned in an earlier post prescription pain relievers have been making me itch, so I’ve had to try different things.

I tried Arnica Montana (most just call it Arnica) in the oral form.  I’ve used the topical gel many times with much success, but I’ve never tried the tablets.  Before surgery we checked to make sure it wouldn’t be adverse to my medications, but didn’t see where it said not to take it if you are allergic to ragweed.  (guess what my number one allergen is?  Ragweed!) So I took it for a day and my muscles seized up.  I couldn’t even sit up without help.  So no more Arnica for me.  It took about 2 days for me to not hurt all over.  Kind of ironic, I used it to help with the pain and ended up in more pain.  But, hey, it took my mind off of my ear!

I am able to take an NSAID by injection.  I can’t take them orally because they have caused me a lot of stomach troubles.  So I have Toradol injections.  Unfortunately, I can only have 2 a week.  But they do help, a lot!  I use this for my most intense migraines too.  We decided to try 1/2 a shot to see if it helped, and it did!  Yay!  So I was able to have more shots just at a lower dose.  This helped a lot, especially when I couldn’t sleep.  But really, over all, I haven’t been in much pain, just uncomfortable with my glasses.

The vertigo started about 3 days ago.  I don’t know what’s going on really, I’m sure it has to do with the fluid from swelling and it going down…or something.  It’s not the normal Meniere’s vertigo.  It’s often positional, so if I lie very still I don’t spin.  I’ve also been having this strange sensation as if I’m having vertigo, but I’m visually spinning.  I feel my body/head moving, but I’m not moving, nor do I see anything moving.  It makes me just as sick as vertigo does.  Strange huh?  I’m still so grateful I was able to get Phenergan injections that hubby can give me.  I think it has saved me many times.

I was supposed to be activated and get my processors on the 8th, but the vertigo would not let me.  I thought I probably could have made it through the doctor’s visit, he is just checking the incision site, but going through the audiologist appointment would have had me on the floor!  That is a LONG visit.  Not only does she actually turn things on, she has to adjust things as I tell her how the beeps sound.(called MAPping for those with CI’s, or those who are just interested).  Then I have to have a hearing test, not just a regular hearing test, but a very long and detailed test.  I get so tired and worn out every time we do this I often have an attack that evening, so going there with me already feeling wonky in the head, would not have been wise.

Unfortunately, that means that I may have to wait until the first week of November.  We/They are trying to work it out so I can get in sooner, but the way I’ve been feeling I wouldn’t say it will be too soon anyway.  The office is looking to set up the appointment with my doctor on one day and then the audiologist on a different day instead of trying to do both in one day.  This should be easier to schedule.  Plus, it should also be easier on me.  At Duke they normally try to schedule as much on the same day as possible because so many people come from far away to be seen.  We often have to remind them we just live about 10 minutes from there.

So that’s my news for now.  I’m tired a lot, sleeping a lot…..guess I’m healing.  (oh who am I kidding, I was sleeping a lot before the surgery!)  Catching up on some reading, and watching TV.  The new season of Rupaul’s Drag Race just started!  (actually, they are showing season 1 again, it’s a hoot!)  If you asked me last year if I watched any reality shows I would have said no, but I love Rupaul’s show! after all……

“If you can’t love yourself how the hell are you going to love anyone else?…..can I get an Amen?” – Rupaul signs off each show with this quote!

Round and Round I go…where or when I’ll stop nobody knows…

I feel like I haven’t been here in ages, and I probably haven’t.

I have to make this short, but wanted to give a little explanation as to why I’ve disappeared…when I have so much to say!  And give a tiny update.

On a Carousel at the NC State Fair
On a Carousel at the NC State Fair – I’m on the left, Jenn in on the right, and Stuart is in the mirror.  As you can tell, this photo was taken before I started having Meniere’s symptoms so often.  Taken Fall of 2005….I think.

I’m having a LOT of VERTIGO!  Luckily it’s not the severe- losing control of all bodily functions for hours -kind of vertigo.  It is much slower, and less horrific.  But it’s happening almost every day, often more than once a day.  I’m getting to the point where I’m terrified my worst fear may be realized…..at some point it won’t stop.

I am so happy I am handling it so much better than I used to.  I used to freak out even if it was a mini attack.  These attacks are more than a mini (one that happens for just a few minutes), but not a full blown severe attack.  Hard to explain, but I have a routine now that really helps.  When it starts, I take my meds, I get ice and put it on my chest or wrap it around so it hits my back and chest (I always get very hot and if I can cool down fast it helps).  {I keep these things close when I’m alone, when Stuart is home he helps, but I am always prepared.}Then I put something close I can focus on, usually a cup.  I hold it with my hand…and close one eye, that seems to help a lot….I tell myself….actually I think it is important to say this out loud if you can.., “This is not real, you know your hand is not really moving, so nothing is moving, This is not real…this is not real….”  I also try to control my breathing.  Normally, I start breathing short and fast, now I try to take deeper breaths and tell myself to calm…remember, it’s not real!  At times I chant, Stuart will chant with me…it’s very soothing, even when my body is telling me that nothing is as it should be.  I’m also very lucky that I now have Phenergan shots at home.  My otologist (for those who may not know, an ENT is an otolaryngologist – study of Ears, Nose, and Throat….my doctor just specializes in Ears…the oto- part.) couldn’t give me a prescription for injections, but my Migraine doctor can because she is a pain specialist.  The Phenergan shots help stop the vomiting, and that’s more than all right with me!!!  (I do need them when I have migraines too)  I do still get nauseous but I’m pretty sure that’s mostly because the acid in my tummy gets all churned up due to the stress.

OK…so that’s why I haven’t been around.

Now….why I might not be around…but I might….

My Cochlear Implant surgery for the right ear is next Wednesday, the 25th!  I’m not sure how recovery will go, we know that I can have the same surgery many times and each recovery is different.  I’m really hoping that this one is easy because I’ve developed an intolerance to narcotics.  So, no pain pills for me to come home with.  My husband has a call in to my migraine doc to see if there is any options.  I do have some meds from her for migraines but I don’t want to use those without her telling me exactly what to use and how often.

Depending on my recovery, I may be on here a lot, or I might not be able to be on here much at all.  Hopefully, I can post again before then.

My senior quote in high school: “By the time you figure out what makes the world go around, you’re too dizzy to care”   hmmmmm, prophetic?

Filing Disabilty

We finally filed the paperwork for disability, and two days later I got a packet wanting more information about how my illness(es) limit my activities.

This entire process has taken so much out of me, it is so depressing.  I do not think of myself as being so dependent and disabled as i really am.  Writing it out is taking its toll on my psyche, and making me very scared about hubby taking on more responsibility outside of the home.

I was just filling out the papers and it asked what I could no longer do because of my illness that I used to do.  It gave me one line.  Really?  One line?  I realized I could probably write a book!  I listed some of the most important things and then said there were way too many things to list in that area.  I should probably add a new page.

When I think about it, the question should be, what can I do now that I could before.  I used to do be able to do more than I do now.  Now, I spend most of my time in bed.  That needs to change, even if I just go to the couch.  But the headaches are happier in a dark room, and my bedroom has been made dark, no other room is.  I can still type on the computer…well some days.  Some days, like recently, I’ve been having low-grade vertigo for days.  I have been having a heck of a time.  Every day I feel like I can’t move my head, things move, just not very fast.  In the evenings it gets worse, much worse.  (perhaps my Intracranial Hypertension meds need to be adjusted?…who knows.

The paper asked me if I have any unusual fears or behaviors.   Wow!  That got to me.  I actually had to admit my fears.  My fears that I will have an attack in public, my fears that an attack will hit any time (of course these fears are very justified).

The Bath by cristalart at deviantArt.com
The Bath by cristalart at deviantArt.com

But then there is the fear of taking a shower or bath…yes, I am absolutely terrified every time I have to bathe or shower.  I’ve had an attack in both places, I never feel steady in either place, and I’m simply scared.  I can’t be in either without someone (Stuart) in the bathroom with me, often in the bath or shower with me.  Washing my hair is the worst.  Having the water on my head, the temperature change, my head goes crazy.  It doesn’t seem to make a difference if my hair is long or short, it is hard.  At least when it’s long I can go longer between shampoos, I can just put it up in a pony tail and no one knows.  (luckily I have dry hair).  I normally wash up at the sink, and when I can’t do that because of my wonky head, I use wipes.  Still, I miss my lovely baths.  I used to relax and enjoy a bath.  I’d light candles, read, or just soak.  It helped my sore muscles and it made me feel pampered.  Now, I’m embarrassed because I’m a bundle of nerves and crying just thinking about the fact that I need to take a bath.

Many days I’m afraid to get out of bed.  I will wake up and I’m just not sure.  OK, I feel like I could, but do I risk it.  The last couple of weeks have been vertigo attack after vertigo attack, I hate to be unprepared for an attack, and it’s easier to ride out in my bedroom.

I’m not trying to sound pitiful.  I don’t want that.  I am trying hard to make things better, and I have had a few decent days.  Yes!  Celebrate the good days!!!  It has just been hard writing down all my limitations.  It’s also hard telling them, well sometimes I can do this, and other times I can do this, but most of the time I can’t do most of it.  However, I do hope it gets better.  I even said that in the paperwork.  I do hope I will be able to do more, but I know I will always have severe limitations.

Funny thing….when they asked what I used to do that I can’t do now, I just realized I didn’t say “Hear”.  Ummm, you would think that would be the first thing I thought of…but no..?

But that’s another story.

Under Pressure….CSF pressure Up – Down – who knows.

The Headache, by Kamshubel (from DeviantArt.com
The Headache, by Kamshubel (from DeviantArt.com

In my last post I talked a bit about my headaches, and the Cerebral Spinal Fluid (CSF) being a bit out of control.   So let me give you a run down of how things have been going.  It will be pretty short, but at least I’m posting, right?

I had my Botox shots on April 7th, after about a week they started to really work.  My headaches lessened in both frequency and intensity.

Then I had the mishap with my medication on May 25th…or sometime around there.  I got all of that straight, and started taking my Diamox religiously.  I have a separate box just for it with 4 pills in each slot, then I can just look in and see how many I’ve taken at any given time.  All good there…at least I thought it was.

About this time I started my period and the weather went wild, storms every day, the humidity and barometric pressure all over the place – a perfect storm for a migraine.  For 2 weeks I had a horrible headache every day, sometimes my migraine meds worked, sometimes they didn’t.  The headaches kept changing intensity.  One moment I would be around an 8, it would drop to a 4, then back up again…all within minutes.  I was so confused.  Then one day about a week ago I realized my headache felt better if I was up, as soon as I lay down, BAM, the pain would assault me again.  This could only mean I had high pressure.  But I will admit I felt better than I had for a while, since I could get up and move around with relatively no pain.  I was still taking my medication exactly as prescribed.  The next day I awoke with very little pain, until I got up.  The world spun and suddenly I had a headache so bad I nearly blacked out.  Dang-it!  Low pressure again.  We are pretty sure I had a blow out, and my pressure dropped drastically.  So for the past week, I’ve been back on my back.  I need help walking to the bathroom.  Night before last I had an attack, it was different from most.  I did not have true vertigo, I constantly felt like I was going to, I had light vertigo for a while but mostly I only spun when I moved my head.  (Yes, it’s pretty hard to not move your head, especially since I had to go to the bathroom often during this time)  I was sooooo very nauseous.  I wanted to throw up just to make it stop.  I had spasms in my stomach like I was throwing up, but nothing came.  I could feel the gorge in my throat, but it didn’t come out.  This was very painful.  This went on for a little over 6 hours!  I took everything I could to try to stop it.  The nausea was so horrible.  I took the pills for it and suppositories.  Nothing was working.  And I would love to know why, when I have an attack (and I’ve heard others say this about Meniere’s attacks too) do I have to go to the bathroom so much?  My dear husband was so wonderful, but I kept getting so confused and I’d start to cry a little because I couldn’t understand him.  He was a dear about it all, and stayed up with me…he never left my side except to get me more ice.  (I forgot to mention, my Tinnitus has been going Crazy! So loud!  I had a piercing sound the other night and told Stuart my brain was having an Emergency Broadcast Signal!)

Now, I have super-duper headaches.  Today, it doesn’t seem to matter if I’m up or down, it still hurts.  My migraine meds are working a little.  (the Toradol shot did little to help, it’s usually magic in relieving my migraines).  I will see my headache pain specialist on Monday, hopefully this will be over by then, but I hope they can tell me what the heck has been going on!

On a better note: My asthma is much better.  I still have coughing fits, especially after I eat, but they are less frequent and less severe.  I’m so relieved about this.

My goal lately has been to laugh at least once a day.  Stuart’s a great help with that, he often makes me laugh….and Max is good for it too.  Right now he’s loving on my laptop so hard it’s about to fly off my lap.  It really is funny when he comes up to me when I don’t have my Cochlear Implant on and Meows at me.  I just see his little mouth open and close, no sound…Stuart says he does it often to me and I don’t even notice.  Poor Max. I promise he does get a lot of attention.  I think even more than I do!  haha

I’ve written numerous posts in my head, but haven’t been able to write them.  I have tried, but my brain gets confused or my head starts hurting too much.  I wrote one and tried to read it over and got so confused.  I am not reading this one, so forgive me if it repeats a lot, has a lot of grammar mistakes, spelling mistakes, or simply doesn’t make much sense.  You are free to ask me to clarify anything.

 

Cough….cough….

asthma-airways_lg
To find out more about asthma please click on this picture, or search the internet.

Yes, I am coughing a lot again.  I’ve been coughing for quite some time, it got better, but it has gotten worse again.  So much so I had a hard time swallowing because my throat has been so raw.

It started getting worse on Friday, I saw the doctor yesterday.  She says my Asthma is not uncontrolled.  So I’m on a different inhaler for a while, she said I’d probably start to feel better in about 4 days, I know I slept better last night. Thank goodness.

This issue has been causing a lot of symptoms that we thought were from my other illnesses.  I have not been getting enough oxygen, they tested it yesterday and it was at 95%, not bad, but not great…..and I wasn’t having an attack, so my oxygen levels will drop a lot during those times.  I was also given another test…and frankly I’m not sure what it was called, I had a hard time hearing the doctor, her frequency just wasn’t hitting right.  Anyways, the test showed how much air you can expel when you blow out as hard as you can.  It was supposed to read 380, the highest I could get it was 300, I had to blow 3 times, and I almost passed out.

So what does this mean?  Not getting enough oxygen, and not having my lungs working properly can be causing a lot of my dizziness lately.  Especially when I go from sitting to standing.   I was getting worried because I can’t walk from one room to the other without getting winded and the room starts to move.  I thought the getting winded was because I can’t really do cardio, it hurts my head too much….it raises my CSF pressure.  But now I found out that I’m getting winded so easily because I’m not getting enough oxygen. I also found out this is probably why I’m so exhausted and lethargic all the time.  I sleep so much, and have no energy to do much of anything except maybe watch TV, and sometimes read.  But reading takes comprehension and recall, things I simply haven’t had lately.

Having your oxygen levels just a little bit lower than it should be can really cause havoc.   I knew my mother was going through a lot when she had lung cancer, and her oxygen levels were low, but I feel so much more for what she had to put up with.  I remember the insurance company not wanting to pay for my mother to have oxygen at home…I don’t remember what level they said she had to have but her’s wasn’t low enough.  I can’t imagine losing any more breath than I have and being told I can’t get help.  Luckily her doctor called the insurance company and wanted to know how they could say what her patient needed when they aren’t doctors and haven’t examined her.  She demanded that my mother get oxygen, and she did.   I was impressed with her doctor for that…for some other things, well she took good care of my mother, but she did not handle things well.    But that’s for another rant sometime.

So my dear friends, I haven’t meant to stay away so long, or so often.  I simply haven’t had the energy.  For example, today I woke around 11am, I went back to sleep about 1pm, I woke coughing and sick to my stomach about 3:30pm….it’s now 5pm.  It’s the end of the day for most people, and I’ve only been awake for a total of 3 1/2 hours.  I will probably stay awake for a few more hours, but I’ll be asleep by 11pm at the latest.  You can do the math to see how many waking hours I will have today, it’s too hard for me to think that much.

Update on other things. My darling hubby hasn’t found a job, but he has a phone interview tomorrow, and he had a long talk with a recruiter today (they really think he’d be “perfect” for that job, but we’d have to move to Nashville….if he thinks he’ll be happy, I’ll live anywhere.   The big worry he has is leaving me alone all day.  He’s worked at home for years now, even before I got sick.  I think it will be good for him to get out and go to an office…..I’ll be fine, or I’ll hire someone to come stay with me. Another big worry about Nashville…my doctor’s aren’t there.   I’d have to try to find a Neurologist that’s a headache pain specialist because I have to get the Botox shots every 3 months, and I can’t see Stuart taking a day off every 3 months to bring me to Durham.  I’d keep my ear doc, after having the second CI implant…..(I still don’t know when, I’ve had to cancel many appointments with him..dang-it.)…I won’t have to see him very often unless something goes wrong.  And it just won’t…enough of that!

I mentioned the Botox shots, I got my happy little Botox bee stings on the 7th, and I’m a happy camper!  Oh my goodness those things sure do make a difference.  I’ve gone from having pretty much, NO, pain free days, to mostly pain free or very low pain days.   I’m not afraid I’m going to run out of medication, so I take it earlier and abort the migraine before it takes hold and ruins my life. My doctor also prescribed an NSAID shot that Stuart can give me if I have a really bad headache or have one that last more days.  That makes me feel good to know that it’s available.  She also prescribed a muscle relaxer….after I asked about it….I feel that my migraines last longer because I tighten up so much during it and just can loosen up even after I’ve taken my migraine meds.  She said they do often use that as a cocktail to help.  And it has helped!   I can’t take pain medication any longer…..unless I want to itch for at least a day.  For some reason, I’ve become very sensitive to pain medication.  We’ve pretty much tried them all, but since they are mostly all opioids I’m having a lot of the same problems with all of them.   And I can’t take NSAIDs by mouth, my tummy does not like them!  So that put a big dent in how I could fight my migraines.  Now I feel we are on the right track.  I hope the Botox last a good while….I don’t want to be bombarded with migraines before it’s time to visit the Botox Bees.

There we have it, an update on my little family……oh Max is doing fine, right now he’s trying to push my laptop off my lap.  He loves me so much more when I’m doing something.