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.

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?

Things on my mind….

Got Ewe On My Mind by LoopyDave on DeviantArt.com

Please note, this post is just random thoughts I’m having and want to get out of my head for a bit.

I’ve had a lot of time to think recently.  I haven’t been able to type a lot because I hurt my shoulder.  I fell, again.  This time I was going to the bathroom in the middle of the night.  I was not balancing very well, but that’s normal.  I started to fall right at the toilet and fell into the wall.  My shoulder took most of the weight.  So I’ve tried to just do less with it, but it got worse.  So I had to do much, much less.  Now it seems to be getting better.

So if I haven’t been commenting on your blogs, it doesn’t mean I haven’t been reading, I just haven’t been typing much.  I read them in my email on my phone, it’s hard to comment on my phone, and that would hurt my arm just as much, I think.  So in the wee hours of the morning when I’m up coughing, I’m probably reading your blog, and thinking of You.

Stuart has started school.  I’m proud of him.  I’m also scared and stressed out.  I don’t want to live poor again.  Not that we are rich by any means, but I used to live paycheck to paycheck and often ran out of money.  I remember many times living on peanut butter and jelly sandwiches for weeks to get by, I’d also accept dates from guys I knew I didn’t want to date just so I would get a good meal.  Stuart has never wanted for anything really.  So I’m much more stressed about it than he is.  In my heart I know things will work out.  But, in my gut, I’m nervous.

I will be going to Duke’s Asthma, Allergy, and Airway clinic on Friday.  Please everyone think about me and send good thoughts that they will be able to stop this dang cough.  I’ve been coughing every day since mid October…yes that’s last year!

On September 3rd, my hubby and I will be celebrating our 9th anniversary.  We can’t really do anything but we’ll be celebrating that we’ve been through so much in our 9 years of marriage and are still madly in love.

The second week of September I go in for Pre-Op for my second cochlear implant surgery.

The surgery is on September 25th.  I don’t know why, but I’m more nervous this time than I was the last time.  Before I was more excited, now, I’m a bit scared.  I shouldn’t have, but I expected a lot from the first CI, so this time I’m not expecting anything.  Which is silly, that’s what I have now.  No hearing in that ear.  Things have to be better when I can hear out of two ears.

Well, I have much more on my mind but I don’t have the energy to write more right now.  And you are probably tired of reading my tirade.

What’s on your mind today?

What’s going on with me?

I know you are asking “What is going on with Wendy?”, she wrote a post about how much better she was feeling emotionally and then she just disappeared.  What? It wasn’t that long ago?  Wow, it feels as if so much time has passed since my last post!

So much has happened.  Last Thursday (I think that’s right, I’ve lost track of time) I had a bad asthma attack and was told by the doctor to come in NOW!, then when they saw me she said, if this happens again, go straight to the emergency room!  Asthma can be one bad mother! (pardon my words, but I was thinking worse…this whole thing with my asthma suddenly getting worse after so many years, well I’m just ticked off about it!)

Want to help someone with Asthma? Please do not wear perfume to the doctor's office. image by Ryan O'reilly at Deviant art
Want to help someone with Asthma? Please do not wear perfume to the doctor’s office.
image by Ryan O’reilly at Deviant art

The real kicker of the whole situation is that I wasn’t that bad at home when we called the doctor, I just hadn’t been able to sleep because of coughing all night.  Then on the way to the doctor we passed someone mowing grass, and I started to wheeze.  I could feel the left side just close up.  I used my inhaler…again….and again.  Stuart said, do you want to go to the Emergency Room, I said no.  Then shortly afterward I croaked out “E…R…”, but then the inhaler started to work and I could breathe again.  So we just went to my doctor’s office.  Unfortunately my doctor wasn’t there and I had to see someone else.  She doesn’t know me.  I do not get anxious when things like this happen. (I get more pissed than anything, I admit I did get a bit anxious when I thought I needed to go to the ER, I hate going there, but that ended as soon as I started to breathe again.)  I’ve had enough happen to me, I stay calm and make decisions on how to handle it.  She thought my “anxiety” was making it much worse, and she’s not the kind of doctor you can explain things like that to.  She would listen, but she would still think she was right.

I saw my doctor on Tuesday, and she agreed, I’m not likely to have anxiety about these things.  And we discussed what type of specialist I should go to, an allergist, a pulmonologist (lung doctor), or an ENT.  We decided on the ENT because I’m having a lot of drainage from my sinuses too.  We figured he may be able to fix that, and if he couldn’t help with the asthma, he could recommend someone in at Duke.  I know you are all thinking I already have an ENT because of my ear troubles, but my ear doc, is just that, he specializes in ears.  He’s an otologist, just ears.  However, we are getting a recommendation from him to see someone in his group.  She wrote me a prescription for a cough suppressant to take at night so I could get some sleep.  Unfortunately, it has high fructose corn syrup in it, not something I can take!  So she recommended Chlor-trimeton, an over the counter antihistamine that is very drying.  Finally, I have been able to sleep with minimal coughing during the night!  I was so sleep deprived I was loopy.

One day…about a week ago now, I fell.  This time I fell into the wall.  Not thinking it was a big deal, I didn’t even hit the floor, but I jammed my arm.  So typing is a bit difficult.  I have to put heat on it and stretch it and mainly just let it heal.  So I won’t be typing a whole lot…it’s hard to do with just the left hand.  I do sneak in there with the right hand, but then my arm aches for a long time.

Oops, I fell, again!  I went to the bathroom and started to spin (the vertigo has been back with a vengeance this past week!), I called out for Stuart but he didn’t hear me.  So I tried to get to the bed as quickly as I could.  I hate ending up on the hard bathroom floor when I’m spinning for hours.  I almost made it.  My walker was near the bed and I went to grab it, but missed (the handles weren’t where my eyes said they were), and I went down.  The front of me mostly landed on the bed, but my knees came down hard.  They hurt for a bit, much like when you fall when you’re a kid.  No biggie, but I’m tired of falling.

Image by Wendy Holcombe
Image by Wendy Holcombe

I’ve had 3 bad vertigo attacks this week!  This week!!!  Since my surgeries I’ve been averaging about 5 a year.  I will have little mini attacks more often, but I think they are more migraine related.  So THREE in one week is unheard of for me now.  But I have found something out about myself.  I don’t panic as much anymore.  (well I started to panic during the one yesterday, it has just been happening so often!  And this one just didn’t want to end.)  However, I’m happy to say, for the most part, I have remained calm.  I tell myself over and over, “it’s not real!”  I also stare at something close to me, often with one eye shut…it seems to help.  I will put my hand on that focal point (usually a cup) and tell myself, “you know your hand isn’t moving so the motion is not real, it will go away!”   I’m also very lucky that I now have Phenergan injections that Stuart can give me.  My migraine doctor wrote the prescription for it, and it has helped a lot.  I still get very nauseous, and some times I feel I might throw up (especially if I look away from my focal point that is close to me, seeing the room…the world…spin is much harder to deal with.) but for the most part I’m not throwing up as much during attacks, or during migraines….yay!  So to sum up, I’ve been having more attacks, but I’m proud I have been handling them better!

The attack last night was strange.  I’ve only had one other attack like it.  I had the spinning and then I just fell asleep.  I woke up a little over an hour later and the room was spinning.  That just isn’t fair!  I told Stuart, that’s against the rules.  When you have vertigo and it finally slows enough that you are just exhausted and pass out asleep, you are not supposed to wake up having vertigo.  At least it was slow moving…but it lasted over an hour longer.  That’s the part I didn’t handle very well.  It’s just against the rules!!

As you can see there’s been a lot going on, and I didn’t even mention it all.

Here’s the highlights….

  • Asthma is better, but not controlled.  Need to see specialist.
  • Meniere’s attacks have increased, but I’m handling them better.  (may be caused from lack of sleep due to asthma)
  • Migraines have been intense, but mostly short-lived.  Coughing raises my CSF pressure, so these types of headaches are expected.
  • Still need to go to cardiologist to find out about palpitations.  (that is rapid heart rate, right?)  I haven’t had this happen since March.  (I have an appointment with him on August 2nd.  Funny thing, it’s Dr. Gray’s husband….if you remember she’s my neuroradiologist who diagnosed me with Idiopathic Intracranial Hypertension.
  • Still waiting on insurance to approve second CI, but they wouldn’t operate on me right now anyway.  Not with uncontrolled asthma.
  • Stuart is still not working.  He is looking into going back to school for Medical Informatics.  (I told him he made up that word, but it’s real…I’m so behind the times.)  He would also be working, but things will be tight for a few years.

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.

Leaving in a Mini-Van….

don’t know when I’ll be home again…  (yes I butchered the song, “Leaving on a Jet Plane”).

We will be leaving Tucson tomorrow, Tuesday, March 19th.  I’m very ready to get home and absolutely terrified of the trip!  Terror to the point of making me sick.  What to do? Oh what to do?  I know I’ll be alright no matter what.  Stuart will be with me, and he’s just wonderful at handling things when I’m not at my best.  I feel so guilty, Stuart has been packing everything and getting food ready, and washing clothes…..yes, he’s been doing everything, as I lay in bed with ice on my head in the dark, trying not to throw up.  My stomach hurts so bad I’m getting scared….do I have an ulcer?

OK…now you’ve seen me at my most anxious.  Not pretty is it?  Getting  here wasn’t that bad.  I had that horrible cough and every room we stayed it smelled way over fragranced.   I’m sure it’s because we have to have a room where pets are allowed, but it kills me!  But I didn’t get sick…I mean sick, sick….until we got here.  Then I had a horrific attack, in a car!  I think that is one of the things that is scaring me the most.

I am ready to go home, or at least I’m ready to leave here.  This was one of the most miserable trips I’ve ever been on.  Spending the little bit of time, I was able to, with my niece made much of the misery worth it.

I noticed something the last time I was with my niece, I push myself more when she is around.  I have a ball with her, but I do more than I normally would…and I pay for it for a few days, however, it’s totally worth it!  Her imagination is incredible!  I wish I was able to spend more time with her.

I have so many appointments when I get back to NC.  First I see my CI (Cochlear Implant) audiologist.  I may have mentioned on here that I haven’t been thrilled with my hearing with my CI…but I figured something out!  My CI audiologist adjusted things so it would work best with my hearing aid.  After all we hear better with two ears.  The trouble started when my right ear decided it was going to go defunk since we’ve been here.  I can barely hear anything out of my hearing aid…on good days…and it is distorted.  So I’ve just been wearing my CI…it wasn’t set up for that, so I’m feeling much better about that.  It does look like the second CI will be happening….after all, the hearing aid isn’t doing much.

Second appointment, my therapist.  Oh how I look forward to talking to her about this trip, what a let down.  Plus, I’m really over loaded with guilt lately.  I think I should say…GUILT!  Not that it’s justified.  Most of it is about things I can’t do anything about.  But one big issue I’m having is my grief over Sandy, and my guilt surrounding her death.  I simply will never know if I did the right thing, if we could have done more?  I simply miss her so much, there still has not been a day since she died that I have not cried.  On April 18th it will be a year since I lost my little girl.  (funny how we say “lost”, I didn’t lose her,  I know where she is…in a little brown box wrapped up in her favorite blankets with her favorite toys and a raw hide)  I’ll always love you Sandy girl….but I need some help dealing with the loss of my very best friend.

I’ll also be seeing my Otologist for a CI check up, and to discuss the possibilities of another one.

In May I’ll be seeing my headache pain specialist and get more Botox shots!  Yes I’m looking forward to that appointment, too bad it’s so far out.

Some time in there I’ll be seeing my GP, time for blood test, have her check out this cough thing and all that kind of stuff.  Including this horrible stomach pain.

So I’m all caught up…I think.  Not sure if I’ll be able to do anything on the computer while we are traveling.  I know we’ll have Wi-Fi in our rooms, .but don’t know if I’ll feel like looking at the computer.