Learning how to hear….again.

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease4 Comments

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.

On By WendyIn Chronic Illness6 Comments

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

On By WendyIn Chronic Illness, Cochlear Implant15 Comments

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…

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease6 Comments

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….

On By WendyIn Chronic Illness, Cochlear Implant4 Comments
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?

Customer Service and Health Care

On By WendyIn Chronic Illness, Health Care7 Comments
Doctor's Waiting Room, by CarolynYM at DeviantArt.
Doctor’s Waiting Room, by CarolynYM at DeviantArt.

Why do a lot of doctors and/or their staff think they are doing patients a favor by seeing them?  We are their customers, we are paying them, there are plenty of other doctors in the same field; we do not have just one choice!  (I do recognize that some in rural areas do often have just one choice, I grew up in an area like that.  We had to drive 2 hours for me to see an orthopedist, but still, they need to treat us with respect.)

I am so tired of going to a doctor’s office only to wait way past my appointment time, then I’m rushed through my appointment, and when I leave I feel like I wasn’t seen as a person, I was seen as dollar signs.

I have felt this way too many times.  Often, I only feel this way with the doctor’s staff.  I’ll love the doctor, but their staff is rude and inconsiderate.

I can give you many examples of this, but I will just give you 2 that have happened to me recently.  I wish I could say these were isolated events, but unfortunately they aren’t.

Recently I was looking for a new gynecologist.  The last time I went to my old GYN I had trouble with billing (during my annual visit she found something, I had to go to her office to give me a paper on it, I was subsequently sent a bill for an office visit…What?? Even if I was to be charged this, why was I not told in the office?), and feeling like she wasn’t listening to me or answering my questions.  But, this is a different story.  I asked my migraine specialist if she had a recommendation for a GYN who would work with my hormones to possibly help with my migraines, and who knows more about menopause than delivering babies.  She recommended someone who sounded perfect.  My husband made an appointment, unfortunately I was not feeling well the day before and knew I would not feel well enough the next day.  He canceled before the 24 hour required notification, and rescheduled.  The next time I woke up with a vicious migraine, and soon had an asthma attack.  No way I could make it.  Stuart called and explained, they said they understood and would not charge the late cancellation fee.  He decided to wait to make the appointment again.  In a few days he called to make an appointment, and set one up.  The person making the appointment said that they realize his wife has health problems but she really needs to make sure and keep this appointment.  Stuart wasn’t happy with this, “You can’t say you understand and then follow up with something like that.”……Then he received a call from this doctor’s office saying that the doctor would not see me.  He told Stuart that we had canceled 3 times with less than 24 hours notice.  Yes, my husband was livid.  He got off of the phone and told me about it.  He then called the office back and asked to speak to the office manager.  First, he told the person he wasn’t upset with him personally, but he was upset, so please don’t take what he was going to say personally.  (he is so thoughtful, I would have been upset with him, the man is the office manager, he needs to take care of these things.)  Stuart then complained about the way he was spoken to, and proceeded to explain that they lied.  He explained what was said, and what the truth was, and also said it wouldn’t matter now because I would not go to a doctor who allowed their staff to do such things.

Unfortunately for me, she was the only gynecologist I have found who is just a GYN and not an obstetrician too.  But I did find one who practices Integrative Medicine, and works with balancing hormones.  I will be seeing her in 2 weeks.  Let’s hope things go better at this office.

The other incident happened at my General Practitioners office.  I went to see my doctor about my asthma, I was still having a VERY hard time.  I walked in the office (with the aid of my spiffy walker) and the perfume smell hit me in the face!  I started to cough more and wheeze.  I was having a very hard time breathing.  I asked the front desk if there was somewhere else I could wait because of my asthma….I explained I couldn’t breathe with all the perfume in the waiting room…and it was obvious!  She got all snippy and said no.  So I said I would have to leave. Then she said, “well only if a room is empty” and she went to check. I felt like she took forever.  I could tell I was making people in the waiting room uncomfortable.  I had to use my inhaler 5 times just so I could catch my breath.  Then she comes out and gets me.  I was a mess, and ended up blacking out in the exam room, luckily my doctor and Stuart saw how pale I was getting and got me on the table lying down and helped me before I hit the floor.  My doctor was not happy.  (I must say that since this incident the staff there have been much more supportive.  I think my doctor said something to the front desk. Plus, I think we have been lucky to talk to staff who are much more likely to help.)  Now when I go there I wait in the hall until they can take me straight back.  Luckily, my doctor is in a building that has a huge hallway.

Do others notice that you get poor customer service from the health care industry?

Yes, I have had some awesome care, and awesome customer service.  I have some nurses and doctors that make me feel like family.  But, it amazes me how many times I’ve gone to a doctor and felt like I wasn’t wanted there….that I was a bother.  (once I actually had a doctor, who I was referred to, ask me why I was there???  Ummm, because my doctor told me I needed to come see you.  This was after she left me in the room with the door open and talked to a friend in the hall for half an hour.  She left a lasting impression on me, and not a good one.  I’m often very nervous now about going to a specialist now, thinking they may wonder….why am I there?  I’ve never been so embarrassed or pissed off (well I’ve probably been that pissed off, but boy was I ticked, and for some odd reason, my feelings were really hurt.)

Please note, I do understand that the staff at many doctor’s offices deal with a lot of strife, but every patient is different and should be treated that way.  I’ve worked in customer service, and I would be ashamed if I treated anyone the way I have been treated at some health care provider’s offices.

Filing Disabilty

On By WendyIn Chronic Illness, Disability4 Comments

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.

What’s going on with me?

On By WendyIn Chronic Illness13 Comments

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.

I have a confession…

On By WendyIn Chronic Illness12 Comments

For over a year I have been clinically depressed.  I have had some small doses of mania in there, but mostly I have been shrouded in a black cloth with no hope of seeing the light.

photo by click tongue, at deviant art.com
photo by click tongue, at deviant art.com

I realize now that my psychiatrist was going through some issues of his own, and didn’t pick up on the fact that my depression was more than what I should have felt.  At one point he told me that he felt like he had done all he could for me and I should see someone else, I could not hear that he was looking out for me, I only heard that I was losing something else in my life.  He had been my doctor for close to 12 years, I felt I was just being tossed away.  So, I ended up staying with him.  It eased my mind, but didn’t make me better.  Yes, I had many things happen that gave me a reason to be depressed, but not as depressed as I was.  I wasn’t acting like me.  I really don’t remember much about 2012, I remember some horrible highlights, but not the good moments.  We all know, that is not me.  I normally cherish every moment I can, and look at things realistically, not escalate them to the point that I can’t see past the hurt.

The mania manifested itself as anger.  I was so angry at times, and I had no control over it.  I hate that Stuart was the one who had to be on the receiving end of all this emotional turmoil.

In 2012 and part of 2013 I cried every day.  Yes, part of it was losing Sandy, but it started before that.  I think the catalyst that started all of this was my diagnosis of Idiopathic Intracranial Hypertension (IIH).   I finally knew I would never get back to the point I was at the year before.  I would never feel “normal”.  There were a lot of emotions that went with this, a lot of realized loses.  I never expected to become a completely “healthy” person.  I’ve never been one, why would that change now?  But something snapped, and I no longer felt as positive as I had.  My new psychiatrist thinks my medication had not been working as well as it should even before then, but I was handling what was coming my way.  The diagnosis just pushed me past the point of helping myself.

I won’t go into everything that happened to me last year.  I will say there were some major things that I simply could not deal with.  However, I didn’t realize it then, I thought I was doing rather well on most accounts.  I knew there was one thing that was eating me up and sent me spiraling out of control….  I posted a poem about family.  How I wasn’t very close to my biological family and I was so happy I had a family with Stuart.  I was not saying it was anyone’s fault that my family and I don’t see eye to eye, it was really more about my love for my chosen family.  Well, a member of my family saw it and sent me a comment out of the blue.  This is someone I used to be VERY close to, but now she hates me and slanders my name to anyone who will listen.  I have not heard from her for about 10 years, yet she says my friends here don’t know me.  She says I’m evil….ect.  I never expected to hear from her again, but there it was, a comment from my niece.  She is 3o years old and still holds a grudge over something.  I don’t know what, and no one will tell me.  I have a feeling it is something from my very unstable Bipolar days, but I don’t remember most of that.  I was literally a different person while that disease had hold of me.

Now I have a new psychiatrist, and after one visit I felt like a weight had been lifted off of me.  I felt validated.  She understood my illnesses without me having to explain them.  She saw I have IIH and immediately said, “You can’t even exercise.”   THANK YOU!   Other doctors have said, “if you could exercise”…..blah, blah,blah.  It makes it sound like I choose not to exercise.  Not that I really can’t.  I will have excruciating pain, and will pass out.  I have figured out ways to do some weight-bearing exercises.  But I have to go slow.  I cannot do cardio, if my heart rate gets to high, I’m out.  She increased one of my medications.  And I am feeling better, but I think it needs to go up a little bit more.

However, I am seeing the light at the end of the tunnel.  Right now it’s just a little candle, but it’s leading me out of the dark.

light at the end of the tunnel....photo from deviantart.com by zoop zoop
light at the end of the tunnel….photo from deviantart.com by zoop zoop

I have good thoughts again.  I am not crying every day.  My anger is much more under control. (I know my husband is very happy about all of this.)  In short, I’m feeling more like me.

I appreciate what I have.  Even when I’m stuck in a dark, silent room because of my migraines I am grateful I can get out of the light, and have a roof over my head.  When the world is spinning and I feel like my stomach is going to come out of my mouth, I am grateful I have a safe place where I can ride out the storm.  I may not be able to walk unaided most of the time, so I’m very grateful for my spiffy red walker, that is also a seat.

I’m grateful for my dear friends who read my rantings and support me so much.

This past Tuesday was my birthday.  I received more birthday cards than I think I ever have since I’ve become an adult.  Some made me cry (in a good way), some made me smile and feel all warm inside.  One I don’t believe the sender was thinking, or perhaps they don’t realize my hearing limitations, it played music.  I can’t understand music.  Stuart had to tell me it played Happy Birthday.  *funny*   He thought it was rude, I really think it was just a matter of not understanding.  Or wishful thinking.

20 years and I still miss you every day….I love you mom.

On By WendyIn Life14 Comments
My mom as a young lady.
My mom as a young lady.

The anniversary of my mother’s death was June 23rd.  I simply cannot believe it’s been 20 years since my mother passed away.  Cancer is not prejudice it will attack anyone at any time.

Having such a hard time with Asthma lately has brought back some dark memories of watching my mother fight to breathe……  Lung Cancer is an ugly way to die.  If anyone who is reading this is a smoker, I beg you to stop.  If you don’t want to do it for yourself, please think of those who love you.

OK…enough of this…it’s not how I want to remember my mother.

My mother was a marvel.  She hated to cook, yet she could make a feast out of next to nothing.  Growing up I didn’t realize we had less than others, I actually thought we were well off, but as I look back I realize just how much that was because of my mom.  She was the ultimate in reusing things, and she’d never heard of “Reduce, Reuse, Recycle”.  She even had a compost pile, before anyone knew what to call it.  She was raised that way, and now I live that way.

She was one of the only people in my life….before my husband….who accepted me just the way I am.  She believed in me.  I believe she is the only one who believed I would graduate from college.  I did it!  With honors!  She was not surprised….I think she was the only one.

I went to a college that was just a little over an hour from home.  One morning before my classes I talked to my mother and told her how much I missed her banana pudding, when I got out of class and came back to the dorms my mother was waiting, with a huge dish of banana pudding.  She was always surprising me.

She grew up on a tobacco farm (so. of course. she became a smoker), she didn’t experience much while growing up, even when she was a young adult she really didn’t know much about the world.  I don’t mean she was naive, she simply had the heart of a little girl, but the inner strength of Super Woman.  We would go places and she would be so awed by the sites.  I shared my love for art with her, and she soaked it in.

Amazingly, my mother never graduated high-school, dropping out in the 6th grade to care for her ailing grand mother, who was raising her.  She also didn’t know ho

Head Shot of my mom. Christeen Hutchins (Moore-Calloway)
Head Shot of my mom.
Christeen Hutchins (Moore-Calloway)

w to drive until after I was born, and didn’t have a pair of blue jeans until she was in her 50’s.

I remember going to the library with her.  She was so intimidated at first, but soon she was deep in the words, looking up things she had been interested in, but never had the nerve to research them.   I remember when she got a Camaro, this woman who didn’t drive until her late 30’s loved speed….but she was very careful.  Until she backed into a mail truck, but that’s a different story.

She may have gotten her first pair of blue jeans when she was in her 50’s, but after that you couldn’t get her out of them.  She loved jeans.  Almost as much as she loved pizza!

I don’t think she had pizza until I was a girl.  She was thrilled when the cheese would leave a string from the slice to her mouth.  I once heard her say she could eat pizza hot or cold, for breakfast, lunch, or dinner.  And she liked everything on it!

I mentioned how strong she was, one day on her way home she was attacked and she fought of the attacker by grabbing a rock and bashing him in the head.  For days she looked in the paper to see if she had killed him.  No notice, but the attacks in the area stopped.  She always wondered.   Her first marriage ended in tragedy.  Her husband had a meeting one evening, he asked if she and their one year old daughter wanted to come, but my mom said she needed to wash diapers.  Hours later she found out he hit ice on a bridge and ran off into the water.  He drowned.  My mother was suddenly a single mother, with no income.  She moved in with her mother, went to cosmetology school, and started a life for her and her daughter.  Then she met my dad…and the story goes on.

We had such a very special relationship.  I do miss her ever moment.  I’m so honored to have been raised by such an amazing woman!