46 Things

I meant to create a list called "45 Things to Do Before I Turn 45", but, well, I'm a slacker and now my 45th birthday is only 8 months away and there are things I want on my list that will not be accomplished in that time frame.

So now it is either "46 Things to Do Before I Turn 46" or "45 Things to Do Before the End of My 45th Year."

So here goes.

1. Walk 1,000 miles.  Not, obviously, all at once.
2. Get down to a healthy weight.
3. Participate in another 10K.  Better yet, a half-marathon.
4. Read the complete works of William Shakespeare.
5. Read the Iliad and the Odyssey.
6. In addition to the above, read another 25 works of classic literature.
7. Go on 3 hikes with a trail club.
8. Take a train ride somewhere.
9. Go to Washington DC and visit the National Mall.  I haven't been there since college.
10. Take a plane ride somewhere, anywhere.  I am terrified to fly, have only flown once (round-trip) and would love to prove to myself I can do it again.
11. Finish 2 more classes towards my Deaf Education certification.
12. Take piano lessons.  Or guitar lessons.
13. Start CrossFit again.
14. Do unscaled Toes to Bar and burpees.  And one unassisted pull-up.
15. Do the Memorial Day Murph.
16. Do Barbells for Boobs.
17. Do 31 Heroes.
18. Pay off at least 2 credit cards.
19. Write a poem. 
20. Go to Chicago.
21. Paint a picture.
22. Illustrate one of the children's books that I have written.
23. Write a novel.
24. Do one random act of kindness a week.
25. Volunteer.  Somewhere.
26. Find a regular AA meeting.
27. Get my nose pierced again.
28. Take a pottery class.
29. Take a beading class again.
30. Draw a picture of someone I love (Benedict Cumberbatch does not count).
31. Finish the Relay for Life scrapbook for my mom.
32. Grow sunflowers in a giant pot.
33. Build a really big snowman.
34. Have a conversation with someone without reading their lips.
35. Blog once a week.
36. Establish a skin care routine.
37. Do 10 minutes of yoga/meditation before bed at least 5 nights a week.
38. Go out on a date.
39. Go to Busch Gardens.
40. Go through all the boxes I have in storage and get rid of anything I don't need.
41. Don't eat fast food (unless it is a salad) for 6 months.
42. Finish the activities in the Dialectic Behavior Therapy workbook and/or the Cognitive Behavior Therapy workbook and APPLY THEM.
43. Go to Hampton and catch up with all of my old friends.
44. Make my own tie-dye shirt.
45. Go parasailing in Nags Head.
46. Catch a meteor shower.

Looks like it is 46 Things to Do Before I Turn 46.

Let's go!

Second Cochlear Implant

I know a lot of you thought :start southern dialect: I done lost my mind :end southern dialect: when I made the decision to get a second cochlear implant.  For over a year since the first CI was activated, I had a completely miserable time.  I had at least two major depressions during the adjustment period, one of which was so severe that I wasn't sure I would make it out alive.  Did I really want to go through that again?  Really?  Really, really??  Who but a crazy person would want to do that?  Erm.  Ummmm.

Here is why I decided to do it anyway.

1.  My goals, especially better understanding of human speech without needing to read lips, are nowhere close to being met, and research shows that two CI's are always more beneficial than one.

2.  I'm better prepared for what I will be facing after the implant is activated.  Nothing, I mean nothing, prepared me for what it would be like after the first one.

3.  The second CI is in my right ear, which is my "good" ear.  Some of you may remember me having to decide which ear to implant.  It was a bigger decision than most people realize.  If a person has a less severe hearing loss in one ear, that ear will almost always do better with a cochlear implant.

Here's a hearing loss lesson for you, starring me (and the hearing banana)- 

The loss in my left ear is in the profound range.  That is one step up from completely deaf.  See the chart below and let me introduce you to the magnificence of the hearing banana!  :applause:

Image from : Listening and Spoken Language

It shows what sounds you may be able to hear at what level of loss.  My left ear's loss is in the profound range.  It is close to the very bottom of the decibel chart.  In fact, the only thing I can "hear" in my left ear (besides certain beeps being fed to that ear via an audiologist's sound machine) is incredibly loud music, and even then only if I am right next to the source, like a huge speaker and my ear is practically pressed against it.  

In fact, the first time I ever heard anything in my left ear, outside of the audiologist's booth, was at a bar.  I was about 22 years old.  I was sitting right next to an amp for a live band.  It didn't even register as a real, recognizable sound, but as a high-pitched tingling sensation.  

I was so excited, though, because it was about 18 years after my hearing loss occurred and I had never registered any sound in that ear before in the real world.  I was hoping that my hearing was coming back!  Nope.  I guess I had just never been in that situation before.  

All those loud, drunken fraternity parties at JMU and no awareness of sound in my left ear.  Huh.

Anyway, this is why I have never worn a hearing aid in my left ear.  The loss is too profound for a hearing aid to be beneficial.  

Moving on to the other ear.

My right ear is in the severe-profound range.  Without a hearing aid, there are some noises in the severe range that register with me, but most don't, and some sounds in the profound range I can hear, but many I cannot.  You see above that pianos and telephone rings are noises that people with a severe hearing loss may hear.  I can't hear those.  

In fact, the only sounds that I can consistently hear without my hearing aid are big, deep sounds like thunder and trains, and even then it depends on my proximity to the sound.

That is how quiet my world is without auditory amplification.  Which, I won't lie, can be kinda nice sometimes.

I've always had to have the most powerful hearing aid on the market.  The last one I had was called the "Sumo."

Sumo image from The Sporting Life.

Nevertheless, a hearing aid was greatly beneficial to me.  It put me somewhere in the mild-moderate range.  I can hear most sounds illustrated in the glorious hearing banana in those ranges.  Recognizing these sounds without a visual cue, however, that's a whole 'nother cup of soup.  

I hear much, much, much more than I recognize.  That is what so many hearing people fail to grasp.  How, for a deaf person using amplification devices, hearing sounds is so much easier than recognizing sounds.

Soooo, there you have it.  My left ear is my "bad" ear, and my right ear is my "good" ear.  A cochlear implant performed on an ear that had some access to sound before the implant will give better results than one performed on an ear with less or no access to sound.  Ergo, a cochlear implant in my right ear should be more successful.

At this point you might be wanting to slap me upside the head and ask me, "Why didn't you choose the right ear in the first place, you moron?!?"  Welllll, with CI surgery, you risk losing your residual hearing!  I was too scared to risk losing what hearing I did have on the chance that the surgery was not successful.

This time the good ear is done.  Because my brain has been receiving sound from that auditory nerve for 40 years, especially with a hearing aid, it is more likely to adapt well to the auditory input from the cochlear implant.

Why get CI surgery at all?  If my hearing aid is the hearing aid equivalent of a sumo wrestler, cochlear implants are like, well, King Kong.  Or a T-rex.  I'll go with King Kong.  Don't you think that T-rexes look kind of silly with those little, dangling arms?

Progress

Good grief.  Has it really been since October since I blogged?

Actually, that is not too surprising.  I think those of you who know me are aware that October and November were two of the darkest months I have ever suffered through while battling depression.  Most of 2012 was like that, actually.  I didn't much feel like writing.  Heck, I didn't much feel like getting out of bed.  Then sometime around the end of November, I started climbing out of the abyss.  It wasn't really through anything I did, although I was pushed (forced really) into getting help and I started talking to a new therapist in December and started seeing a new psychiatrist in January.  More though, it was that things just eased around the end of November.  It never feels like things will ease when I'm in the midst of it.  It is hard to describe to someone who has never been through it the complete loss of hope and the utter dominance of despair.

I used to think, as many people do, what a selfish act suicide is.  Now I understand.  I even defend people who do it, people who can't defend themselves anymore because they have passed on.  May no one misunderstand me and think I mean that suicide is a valid answer.  I don't believe it is.  But I've been there several times now and each time it has seemed to me as the only answer to the pain and I understand now the bleakness, the desperation that would drive someone to do it.  I can say with complete honesty that if I did not have the support system I have tethering me to life even when I most want to escape it, I don't think that I would be here.

This last time, my Aunt Joanne - one of those "aunts" who is a lifelong family friend rather than an actual blood relative - read between the lines of my Facebook posts and started an intervention from all the way in Roanoke.  Between she, my mom, and my sister, I was pushed into getting help that I didn't really want to get at the time because it seemed pointless, and I was so tired.  The tiredness that comes with depression is an entity into itself.  So thank you, Aunt Joanne, Mom and Kelly for not letting me give up.

I am working with a new psychiatrist.  She says she doesn't want to label me "Bipolar" or "Bipolar II" or what have you, but that I do definitely have a mood disorder.  She is focused on finding a different mood stabilizer, because she thinks that will be more key than the antidepressant.  I could tell she was surprised, although she was very professional about it,  that the psychiatrist with whom I used to work had only tried me on two mood stabilizers in the 7 years since he reached the "Bipolar II" diagnosis.  His focus was much more on the antidepressant.

So, my new doctor is slowing getting a new mood stabilizer into my system and slowly weaning me off the old one.  I cannot tell you how excited I am because I have had a very significant weight gain since going on Seroquel and my doctor thinks it is absolutely correlated with the medication.  Seroquel can not only directly impact a weight gain, but also can cause symptoms of false hunger so you feel hungry much more frequently than you should.  If this isn't bad enough for someone who already struggles with her weight, Seroquel also causes fatigue, so working on the weight issue is even more difficult because I am so freaking tired all of the time.  I seriously can sleep 11-12 hours a night and still feel like I need more.  So I am very, very excited to be getting this stuff out of my system over the next month or two and hopefully regaining some energy and being able to refocus on losing some weight because I am not healthy at all right now.

On another bright note, I am finally enjoying my cochlear implant again and I have not even been wearing my hearing aid these last few days.  Not wearing my hearing aid is huge.  Huge!  I still have a looong way to go, but I am wanting to work on it instead of wanting to yank it out and grind it up in the garbage disposal.

So that's it for now.  Thanks for reading my blog!

Not Quite Normal

Audiology appointment today.  First time in months.  Not what I expected.  I thought the CI levels would be "turned up," but -

Okay, this might need a tutorial.  See I have a remote that goes with the CI. A currently missing remote which I hope I tucked into a drawer at work and just overlooked Friday while searching for it because I turned my room and both cars inside out and cannot.find.it.

By the way, my sister would NEVER lose a remote this important.  Ever.  I wish that I had one-tenth her ability to be organized.

Come to think of it, my brother probably wouldn't lose it either.  Now.  He might have in high school, though.

Whoops.  Jumped track there.  So on this remote are different levels and situations that my CI can be tuned to, all with the push of the button.  Back in September when I was feeling like things were not loud enough (and knew where my remote was!), I actually switched it to setting 3, which was the highest of the settings available at that time.

Turns out setting 3 is pretty dang near normal hearing levels.

When GOA tested me today, I was hearing lower frequencies within the range that someone with "normal hearing" would.  Higher frequencies are peskier especially for me since my hearing loss is much worse in the higher frequencies, and he did turn up those just a smidge, but he didn't mess with the lower frequencies.

Nevertheless, what I really need, he said, is just more time.  And time.  And time.

Don't get too excited about these "normal hearing levels."  That just means I can distinguish the presence of a sound at decibel levels that a person with normal hearing can detect, it does NOT mean I am understanding sounds or voices like a hearing person is able to.  I'm not even close to that.  Read on for a better idea what I mean.

BTW, speech reading = lip reading.  I grew up using "lip reading," but as I learned in my deaf ed classes and by working with GOA, the term has shifted to "speech reading" to give a better idea of the depth involved because it is really not just lips that are being read, but many aspects of the face.

Anyway.

GOA tested me with very random sentences.  I mean these things were R.A.N.D.O.M. One might be something like, "Her sister struggled with anorexia", and the next one might be "How dare you think I am a spineless wimp!"  Yeah.  Like that.

He read about 15 or 20 of these suckers under 4 conditions (and the sentences changed with each condition; they were not repeated).  First was CI only (no speech reading).  Second was CI and hearing aid (no speech reading).  Third was CI, hearing aid AND speech reading.  Fourth was speech reading only (no sound).

With CI only, I understood 5%.

With CI and hearing aid, I understood 11%.

With CI, hearing aid and speech reading, I understood 97%!

With speech reading only, I understood about 32%.

You gotta keep in mind, too, that words like "I" and "You" counted.  They probably made up 1/2 of what I understood with the CI and hearing aid.  So that is pretty low, but I guess it might help people understand what is going on with my brain.  You also gotta consider that this was a controlled test.  You put me in the outside world, with all that background noise, and all the numbers will drop.

So I have a long, long way to go.  It is pretty exciting though, when these random noises coalesce into recognizable words without the advantage of speech reading.  It's not happening a lot, but it happened 3 times on Friday.  Yep, I counted.

I don't really know how I am feeling today.  Tired.  GOA mentioned how much energy it takes for people going through this to "hear".  It really, really does.  I'm tired.  I'm still struggling mentally, but I don't really want to talk about that today.  My last entry was like a mental vomit.  I don't want to go there right now.

Round and Round

Hard to believe that just about a week or so ago, I was marveling at eggshells plinking into a trashcan.  I want to be that Carolyn again.  I hate being this Carolyn.  This is what bipolar is like, folks.  Going from joy to despair in a matter of days.  Sometimes a matter of hours.

I was trying to think of a way to describe "this Carolyn" and when "down in the dumps" popped into my mind, it made me think about what a disservice descriptions like that do to people who suffer from bipolar disorder or major depression, as if there is a deliberate wallowing going on.

There's very much a "pick yourself up by your bootstraps" mentality that many people have towards these illnesses, which is as ludicrous as telling a cancer patient to take an aspirin and get a good night's sleep.  I'm not making light of cancer here, lest you take it that way.  I lost my grandmother to cancer.  I lost one of my best friends to cancer.  My mom is lucky to be a breast cancer survivor, but several of my good friends have lost their mothers to cancer.  I would never, ever make light of cancer.  Instead I'm just despairing of the cavalier attitude and ignorance, oh, so much ignorance, that many people have about mental issues.

I read an article not too long ago (sometime in the last year anyway) and I wish I could find it to link to it.  This woman had suffered from bipolar disorder for decades and she said, "It's not that I won't be happy or don't want to be happy, it's that I CAN'T be happy.  My brain isn't wired that way."  I read it and was like, "Yes. This."  

I actually felt a feeling of relief that someone out there was able to put it into words.  I want to be happy.  Doesn't everyone?  But it feels like most days it is a struggle for me to even be functioning. The wiring in my brain is screwed up.  We don't know how or why.  It does not run in my family.  We have speculated before that maybe having meningitis could have altered my brain chemistry to that extent.  Little research has been done about a possible correlation although I did uncover research that links CNS (central nervous system) infections in childhood to a slightly increased risk of schizophrenia in adulthood.  If that is the case, I wouldn't imagine it would be a big leap to bipolar.

All I really know is that it is a terrible way to live.  I have bipolar II which is a "softer" version.  Lucky me.  All that means is I don't have true manic phases, but instead I have hypomania which can manifest in many ways.  For me it is usually anger, racing negative thoughts, fear and anxiety.  The depressions, though, there is nothing softer about the depressions.  They are soul-suckers.

Women with bipolar II are more likely to have substance abuse issues than the average woman.  Yep.  Women with bipolar II are more likely to have weight issues and obesity than the average woman.  Check.  It's the self-medicating.  For years it was alcohol.  When I got sober, it became food.

It often takes years for bipolar II to be correctly diagnosed because it often manifests more as major depression, so psychiatrists are more likely to treat it with anti-depressants and anti-depressants often make bipolar II worse.  So years to get diagnosed and sometimes years to get the medications worked out, if you ever do.  

And the side effects from the medication are often horrendous.  Many days I feel like a barely functioning zombie.  I'm so tired all the freaking time.  At the same time I'm angry.  It's a weird combination as anger implies some sort of negative energy, whereas fatigue implies no energy at all.  

My anger usually turns inward and I want to self-harm.  I used to be a cutter.  I shouldn't say used to be, really, as it has only been a few months and I fight the urge frequently.  I know how crazy that sounds to almost all of you, but the best way I can describe it is that it is an external release of internal pain.

I'm scared.  Looking back over the last few years, it feels like my depressions are increasing in frequency and strength.  For each major depression you have, the odds of having another increase.  By the time you have as many as I have had you are just about doomed to have more.  Your neural pathways are, pardon my language, fucked.

I remember talking to my psychiatrist in early June.  I had a depression from about February to the end of June.  He said, "You are going to get through this.  You always do."  I replied, "Yes, and then another one will come along."  He didn't know what to say to that.  It's a horrible feeling to speak that awful truth and have your doctor not even know how to reply.  He knew I was right so really, what could he say?  I will likely have another and another and another until I die.

Don't look at me differently for this.  Don't treat me differently.  If you see me at work or at the gym, don't look at me with pity.  But don't judge me either.  Please.  I'm doing the best I can.

Eggshells

Today at work I peeled the shell off an egg over the top of a small trashcan. No big deal, right? Who hasn't done that with a boiled egg at one point? As I dropped tiny little pieces of eggshell into the trashcan, I realized I could hear the little plink of each piece as it hit the trashcan.

Wow.  

Such a small thing, but it was so super cool to me that I listened raptly for each plink. Each plink was like a mini-miracle. I think it is the first time I have not been irked by a boiled egg that was not peeling easily. You know how irritating that can be when you have to practically pry the pieces off the egg millimeter by millimeter? Not this time! I deliberately and consciously peeled off the eggshell and dropped each piece one at a time.

Plink.

Plink.

Plink.

I was completely fascinated that I could hear the pieces hitting the trashcan and I was glad to have more of them to hear.

It's been so long since I blogged about the cochlear implant. I am kinda sad that I didn't keep up with things better so I could better remember the milestones, but the whole process was so much tougher than I ever dreamed it would be that I almost lost my mind. Certainly the difficulties propelled me into yet another major depression. As someone who struggles with mental health issues, this was definitely a trigger. I would caution any adult considering this procedure to be sure you have a support system in place psychologically, too, and more than that, that you are prepared for it to be be hard as hell. I thought it was going to be a breeze. 

Nope.

It was pretty bad.

I didn't want to leave my room. I couldn't stand being around anyone. Getting through the day without giving up felt almost impossible. And I don't mean giving up as in giving up my cochlear implant. I mean giving up as in "I can't take life anymore and I want to die." 

Let's backtrack and I will share a few of the things I remember most.

Remember I switched to a new audiologist and it was better? It was better at first, but I kept overreaching. When I was sitting in a chair in the audiologist's office with little noise, it was hard to guess how the CI settings would transition to the "real world." What sounded manageable in those controlled circumstances could be intolerable when faced with the myriad of noises that come with reality.

This is how we arrive at a good volume for the CI - the audiologist will play a beep and I indicate at which point the beep reaches an intolerable volume. Then he does it again with another beep at another frequency, and so on.

I had only been through the process of adjusting the CI settings about 4 times, but I already had a tendency to sit in that chair and hear this isolated beep and think, "Oh, pffff, piece of cake! That's totally manageable! Turn it up!" 

Naturally I would leave the controlled office environment and be assailed by sound at a volume that was really too much. That isolated beep was nothing compared to being hit with voices, traffic, air conditioning noises, keyboards, printers, footsteps, as well as a ton of random clicks, hums, beeps, whistles, screeches, thumps, yells, babbles and knocks that I couldn't even place.

My brain couldn't take it. For months. And months.

I remember one day at work, the sound of the library security gate was all I could hear. When anyone crosses over the security gate, it makes a clickclickclick sound. For just one day, that clickclickclick was CLICKCLICKCLICK to me. Then just as quickly, it receded.  

Now I don't even notice it.

Then for about a two week period in April or May, the clicking of the library secretary's keyboard keys was completely overwhelming. TAPTAPTAP TAP TAP TAPTAP TAPTAPTAPTAP. Argh!! I just wanted someone to Make.It.Stop.

Sometime shortly after that I had a day or two where the background voices of the students was overwhelming. You would think that would be the case all of the time, and yes, crowd noise is often difficult, but this was even worse than usual. I was so overwhelmed by it that I couldn't even lipread. That had never happened before. I've always been able to lipread when talking one-on-one with an individual, no matter what the background situation is. (Well, unless it is dark!)  But I couldn't do it and I had to have students write down everything they were trying to say to me and I remember being near tears.

That is what my brain has been doing all these months. So many unfamiliar sounds have been reaching my auditory nerve and my brain didn't and still doesn't know what to do with them all. It often focuses on one sound at a time. I guess that is my brain's way of figuring out where it goes, like a toddler sorting blocks.  

My mood lifted enough after school let out for the summer that I felt like I was at least a human being again, but still, as recently as June/July, I didn't think I was going to make it with the cochlear implant. 

One night I talked to my mom and told her, "I just don't think this is working for me and I don't know what to do" and then I cried. My poor Mom. 

I kept wearing it, partly because I didn't want to feel like a failure, which is funny because no one, no one was putting that pressure on me. I was putting it all on myself.

Part of me kept saying, "Give it a year, give it a year."  So I pushed on, mostly hating it, but not yet flushing it down the toilet or crushing it under my shoes as I sometimes fantasized about doing.

Progress felt painfully slow.

Then when I got back to work for the 2012-2013 school year, I realized that sounds were not as overwhelming. That really shocked me. I hadn't felt like I had made much progress at all, but being in the mountains for the summer and having that time to heal physically and mentally did more than I had realized.

And now, mid-September, I am ready for my cochlear implant to be "turned up" for the first time in about 6 months. I want more volume! That's pretty amazing.  

I want more eggshell moments.  :)  It is worth it.  

ToEs, ToAs, and GoAs!

One day after dubbing my cochlear implant a ToE - Thing of Evil - I feel much more benevolent towards it, courtesy of a visit with a new audiologist. (Thank you, thank you, thank you, Kate, for asking me to please get in touch with him and get a second opinion!)

One of the first things Audiologist 2.0, henceforth known as A2, no wait, that is not impressive enough. He is a God of Audiology... Audiology God. GoA? AG? No, not AG, that makes me think of Attorney General, which makes me think of Ken Cuccinelli, which makes my stomach spasm. I like GoA, we'll go with GoA. So, GoA told me almost immediately to put in my hearing aid again! He was a little surprised to hear that the other audiologist told me otherwise. He said, "This is not a race. If it benefits you, use it. This is hard enough without making it more difficult than it needs to be." He told me my brain would eventually adapt to the CI and while it may take longer if I am wearing the hearing aid also, it would also happen more naturally. Or more "organically" as a friend of mine likes to say because it sounds more intellectual and impressive (you know who you are).

GoA said that people with bilateral implants tend to do best, then people with 1 implant and 1 hearing aid, and then people with the CI only. My hearing aid does not need to be my enemy!

I almost swooned on the spot upon hearing that. My hearing aid! Green light! Go! I couldn't wait to put on my hearing aid again!

GoA took a lot of time to explain to me what is happening in my brain. I really liked one way he put it - my brain is building a new library of sound. The Other Audiologist ... ToA ha! ... didn't really go over a lot of information with me. I felt like I was pitched into the deep end of the pool without any swimming lessons. Now I still kind of feel like I am in the deep end of the pool and can't swim ... but at least I can tread water and not drown until I learn the freestyle or the backstroke.

GoA also explained that part of the difficulty is that with the CI, my brain is putting familiar sounds in the background and focusing on unfamiliar sounds and that is why noise seems to be all I am hearing.

GoA also said that while being such a good speech reader as I am is advantageous in many ways, that it's probably making it tougher for me in adjusting to the CI because I rely so much on visual cues. He said that people who are good speech readers tend to take longer to adapt to CIs than people who are not. He wants me to try things like watching television without the caption.

He also said that the typical person needs about 3 months before they even start to feel they are adapting. It hasn't even been 3 months for me.

Why the heck was I feeling so rushed and pressured and stressed and like a big, fat failure???

GoA also did another mapping and turned down some of the higher frequencies. He says the goal is to have them at the same volume as lower frequencies, but that can take longer and that is okay.

I feel SO much better.

Tragically, I could not put on my hearing aid as soon as I got home because as some of you may remember, my sister hid it by my request.

A few hours later I happened to glance at a wooden heart container on the bar in the kitchen and I immediately thought, "I bet Kelly put it in there." I know my sister and she would not want to put it too far out of reach just in case I really needed it. She didn't even want to take it from me in the first place!

I lifted the lid and there it was, nestled among other odds and ends.

Putting on my hearing aid was like sinking down into a warm bubble bath. Throwing on flannel pajamas straight from the dryer when it is snowing outside. Relaxing into a massage chair while having a pedicure. So comforting. I missed it and it felt good to have some familiar sound come back without feeling like I was jeopardizing the future success of the implant.

And as for tacking the television without closed caption ... I feel a Buffy Marathon coming on!