Well hello

So hello. No, I haven’t fallen off the face of the earth although I wouldn’t be surprised if you thought I had.

This kind of hiatus strikes me every year around late summer and early fall. Normally I return after a couple of weeks. This time it’s been a couple of months.

During these times, I tend to question why I continue to write blog posts that are rarely read, and almost never commented on.

Don’t get me wrong, I have no ambition to be some wildly popular blogger whose every post generates a ton of comments. But getting next to no comments, even from a couple of family members who tell me they read my blog, yet never comment--well that’s like talking into an empty room with sound deadening properties. What’s the point? Or to paraphrase the cliche, if a blog post generates no interactions, did it even get posted?

Adding to that, Mary’s death was quickly followed by my gym closing for good. This was the gym I had just found and where I felt so comfortable and as though I would be able to achieve my fitness goals. The owners are fairly young and decided to retire early. I can’t blame them for that, not at all. But I was devastated, more than I thought I would be or even possibly should be, so much so that I cried at that loss.

And then all the losses, especially since 2017, just overwhelmed me. 

I am told all the time how strong I am, how they admire me, etc. etc. etc. Well nuts to that. 

I’m tired, I’m sad, I’m mourning what for sure is gone (like my music career from damage to my right thumb that has never resolved even after nearly 30 years), or the sense of where my potential health issues might be (which never not once included melanoma or breast cancer or osteoporosis or this fucking Meniere’s Disease--oh no, I anticipated and who knows may still get a blood cancer given that my mother has leukemia, her sister has multiple myeloma and my aunt’s identical twin sister died of acute leukemia at age 7--THAT’S what I expected).

And yes, I’m doing all the things to regenerate my joy, my contentment, my sense of peace. I write down things I’m grateful for; the journal I’m using has three spots and if I have three things, then great. But if it’s a day where there’s one or maybe even none, I’m not putting something down just to fill the line. I’m keeping it real.

Right at the most bleak time, my parish held a healing mass. I felt like I got thrown a lifeline and reader (if you’re there LOL), I went. I find the liturgy to be so comforting. The words themselves aren’t holy, but the intent is and the relief I felt at being anointed and then prayed for comforted me.

The two areas I continue to struggle with are these:

• Can I successfully train and run just one marathon? Can my body handle the load (because the mental part is not a problem) without more bones breaking?
• Meniere’s Disease. This has been a terrible few months for me, with severe vertigo pretty much every week which means I can’t walk, heck I can’t even stand up, and I throw up violently for hours (no exaggeration). In fact, I write in my gratitude list when I have just minor vertigo or go a full week without throwing up. 

Last week, I saw my regular ENT again, and asked for the referral he’s offered in the past for a more specialized ENT. I will see that doctor on November 8. In the meantime, my regular ENT prescribed Valium and a drug to stop me from throwing up. I am very, very sparing with that Valium as while I stay conscious I’m not at my sharpest. But when the world starts gyrating and spinning, you better believe I’ve taken it. I hope with all my heart this new doctor has a different solution as I really do not want to be on something like Valium. For now, though, it sure beats puking for hours while the world heaves and spins.

I'll leave you with a song that I have always loved, one that's brought me much comfort over the years.

It's still not a banana

But it probably is Meniere’s disease. Which isn’t really a disease, any more than the reactive airway disease I have is a disease. (I don't have asthma, pinky promise.)

Way back in 2014, I got my ears thoroughly checked out by both an ENT and an audiologist. I had some mild low frequency hearing loss, also fullness in the ears but I hadn’t yet had any vertigo or much tinnitus. I mean, let’s face it—as I’ve said elsewhere, I was a military musician for years and you cannot perform the 1812 Overture with real howitzers and not have some tinnitus. But it wasn’t bad, not yet anyway.

About a year later, I was back with the same issues: very full ears that actually aren’t full but sure feel that way, very mild tinnitus and increased lower frequency hearing loss. At that same visit, my ENT uncovered some pretty severe sinus infection issues I’d had for years; I ended up having sinus surgery which helped so much. And I also ended up with a hearing aid—I posted then that I gasped when I heard in stereo again, it had been so long.

But less than a year later my hearing resolved, which I did not expect. That’s when Meniere’s was first suggested and I pushed back hard. I felt like that was a BS diagnosis, and that people who are diagnosed with that tend to get slotted into the crazy, crackpot, difficult patient. No thanks.

I don’t remember exactly when I had the episodes of vertigo (probably because I don’t want to remember) but they were brutal. The world tilted and rotated; I couldn’t walk but had to crawl to the bathroom to puke my guts out for a couple of hours. That happened oh maybe three or four times and then vanished. (Yes, another Meniere’s symptom which I didn’t want to acknowledge.)

In the last six months, my hearing in my left ear has deteriorated a lot, the pressure in both ears is immense and the tinnitus in my left ear is more like standing right next to a Boing 767 engine roaring along on an international flight. It’s loud and it hurts. 

Then this last Saturday, I had an absolutely brutal episode of vertigo, complete with throwing up for several hours. I still feel the vertigo lingering at the edges but God willing, I’m not at the fall down and need to puke stage.

But that got me off my butt and I called my audiologist again, who said oh hey you have to see the ENT first. But he’s just going to send me to you! Yes, but you have to go to him first. And in a nice piece of luck, he had a cancelation the very next morning, which was yesterday. 

And yes, my hearing has deteriorated again. My audiologist reprogrammed my hearing aid for me on the spot, so now I’m hearing in stereo again. The ENT was great, did a really thorough review of my records with him and discussed everything in detail. Since I’m now presenting with all four symptoms, it’s pretty much a certainty that this is Meniere’s. He suggested considering a brain MRI since it’s been a few years (how sad is that that I’ve had more than one?) but doesn’t expect that will show anything. I don’t either but I agreed to get one because I also said I didn’t have melanoma, argued with my orthopedist that my pelvis was not fractured and didn’t really believe my oncologist that I had breast cancer.

So. Clearly I had better rely on my medical partners rather than my own opinion.

Here's my results from 2015 (dots show from 2014, the lines were from that day's test):

And from yesterday (dots are from 2018, the lines are from yesterday):

The right ear (which is weirdly on the left) now shows some typical high frequency hearing loss which generally happens to us all. It's the reverse slope hearing loss in the left ear that's the stumper.

The MRI is scheduled for January 28 so more to come. 

What $2k looks like sitting on my nightstand

Or cause≠ correlation≠ coincidence

Remember the low frequency hearing loss I had? The loss that had been going on for sure for nearly three years and most definitely since 2010 and probably earlier than that?

It’s gone. Vanished, kaput, bye-bye.

I saw my audiologist in early March because I thought my right ear was getting bad (original loss was in my left ear). So he ran a hearing test on both ears; much to everyone’s surprise, my left and right ears both register as normal now. I asked if it were possible that this change was because of the sinus surgery. Nope, he said, not possible. And the reason my right ear seemed as though it might be losing hearing was because my left ear was now over amplified.

He was leaning toward a different diagnosis and asked if I had any tinnitus or ringing in my ears. Of course, I said. Listen, you don’t perform the 1812 Overture with live howitzers year after year and not get some tinnitus—never mind that I’ve fronted rock bands too. That kind of music comes at a price.

So he had me go without my hearing aid for a month and then return to be retested. That was a couple of weeks ago and not only do I not have the low frequency hearing loss in the left ear, the tiny incremental loss I’d had in the very upper register is also gone.

Both my ENT and my audiologist still swear that this change has nothing to do with the sinus surgery I had in December, no how no way.

Now my fancy pants $2000 hearing aid sits in this dry caddy tucked away in my nightstand, and that’s where it will stay unless something changes. I am to get tested again in about six months and we’ll see where things stand.

Edited to add that I'd rather have it sitting there in a caddy than need to wear it. 

Do you hear what I hear?

I thought you might be interested in what it’s been like with my new bionic part. I got it not quite three weeks ago (posted about it here); I went in a week later for adjustments. I asked for the highs to be dropped a bit and the lows boosted, which my audiologist did—then off to work I went.

Yeouch. It was too much, and sounded wrong so I called him a couple of hours later and asked if there were any way I could get in the next day because I knew I couldn’t last two weeks until the next appointment. He squeezed me in, and we agreed to reset all the levels to what he’d originally programmed. He said that it can take a while for the brain to relearn how to process the information coming in that ear.

Today was the second adjustment visit. I told him I wasn’t sure if my brain had adjusted or if I was having problems because this is peak (PEAK) allergy season for me, which means my ears are clogged, or what. But I couldn’t hear as well. This time he didn’t change the low to high frequency program, but instead boosted it all just slightly.

Right now this seems to be working well. I’m going to be in meetings off and on this week so I’ll have more chances to hear in different circumstances. I haven’t yet turned the volume up (I have three levels of volume control), so I may give that a try too. Overall, though, I’m encouraged and I know it’s helping.

When you hear hoofbeats

I’ve always had a hard time accepting that (a) anything was ever wrong with me and (b) if something was wrong, that it might be unusual.

For example:

• I waited three weeks to go to the doctor when I was 19 and had all the symptoms of acute appendicitis. Three weeks! And because of the way my appendix presented itself (small colon and attached length-wise—which I also had a hard time believing), my intestine was compromised and I had a nasogastric (NG) tube. But I didn’t realize that either until a few years ago when a friend of mine, who’s a med/surgical nurse, told me that. And when my surgeon told me that if I’d have waited another day to come in to be seen, I would have died. Didn’t believe him. 
• Same thing with the incisional hernia I developed after six major abdominal surgeries. How on earth could the ongoing pain I had be a hernia? But of course it was and once it was repaired, bam—the pain went away. 
• Same thing with my ears. When the audiologist got nearly giddy last year because I had such a rare hearing loss, I thought surely he was wrong. But of course he wasn’t and my results this year confirmed that diagnosis. Now I’m sitting here in my office typing this post wearing my new hearing aid. And I can hear. 

In fact, when I was in the audiologist’s office and he was doing his thing and finally turned on the hearing aid, I gasped and teared up because I could hear in stereo. I didn’t even realize I’d lost that.

Low frequency hearing loss isn't well known and not well researched or addressed; there are just so few of us who have it. So I'll need to go in frequently over the next month so he can evaluate how the hearing aid is working for me and what, if any, changes need to be made to the programming. And yes, he’s still giddy about me and my hearing situation. I think he might write a white paper about me because my situation is that rare.

Sometimes it’s a zebra.

I don't even know what to title this

How's that for real?

I've spent the last couple of weeks alternatively bummed and irked and accepting. No, this hearing loss isn't huge on the face of it and yes, others have it far, far worse (aren't there always others who have it far worse?). But this is my reality and I don't much like it.

For your viewing pleasure, here's my hearing test results. The results for my left ear are on (oddly) the right: the Xs are the most recent results, and the dots are from last year. The biggest not good changes have occurred between 500 and 2000 HZ. The reason this matters is that's a big drop over last year. I'm still considered moderate in terms of the loss, although it doesn't feel all that moderate to me and probably not to the people who end up having to repeat themselves.

At any rate, I've met with the audiologist and ordered a hearing aid. It will be here next week and then we'll see if it helps and how much. Fortunately there's a 30 day trial period so if I hate it or it doesn't help me, I'll "only" lose $150.

Funny aside, the audiologist I met with today is the one who did my hearing test last year. At the end of today's appointment, he confessed that he doesn't really remember patients' names, just their hearing test results but when I'd mentioned again today that I'd been in the military, he fully remembered me. The reason I mentioned being in the military and being a musician again was he'd asked me if I had any tinnitus. Look, I said, I was a musician in the Army and we played the 1812 Overture with real howitzers, plus I fronted a rock back. Of course I have tinnitus. I don't know any musician who doesn't, to be honest.

Well it's not a banana

I had a very thorough hearing test today, and then saw the specialist. I knew something was up because I could tell during the hearing test that my right ear was just fine, clogged yes but working as intended. Not so with the left ear, and then I got to do some tests I’ve never had done before – things that measured the pressure in my ears, checked to see how well my ear drums vibrate, and then how well the nerves in my ears work to conduct the sound (that one involved vibration on my skull, which felt incredibly weird). The audiologist was almost happy running all his tests because as it turns out, I have a fairly rare kind of hearing loss: low frequency hearing loss or nerve related hearing loss.

Since I got home, I’ve been scouring the internet for more information, and here’s what I’ve found:

• This article talks about severe reverse slope hearing loss – mine isn’t severe, but it’s most definitely reverse slope and as I read the author’s description about what he can and can’t hear, I just kept nodding. I hear some sounds remarkably well; they are all in the higher frequencies. Others get lost in the audio clutter for me. This helps me understand why I didn’t really hear the ambulance that nearly t-boned me the other day. It had one of those newer, lower sounding sirens. If it had been high and wailing, chances are good I’d have heard it.
• This article has charts that show the various kinds of hearing losses as they look on an audiogram (figure 6 is spot on for mine).
• My doctor told me there are generally three causes for this kind of hearing loss: Meniere’s disorder, a small benign tumor that presses on the nerve, and we don’t know. He’s leaning toward we don’t know for me since I have no other symptoms to support a diagnosis of Meniere’s. We could run tests to see about the tumor but if there is one, treatment options aren’t great and don’t have a good chance of improving things. Plus these kinds of tumors are very small and very slow and not life threatening. 
• I can hear women’s voices better than men’s and children’s voices are also better for me. 
• Typically those with my kind of hearing loss will struggle in crowded places with loud, ringing acoustics (think bars, airports, places like that).
• Generally, people with this kind of hearing loss don’t have issues with their speech – they talk just fine. Speech gets affected when the loss is in the upper frequencies. 
• And I found this section from another article to be really interesting – I may have lost this hearing a while ago and just not realized it:

"A low frequency hearing loss is not easy to identify because it tends to not have any symptoms. In fact, lower frequency sounds do not have as much information as sounds in the higher frequencies. Plus, people with hearing in the middle and high frequencies can use what they hear in those frequencies to make up for what they do not hear in the lower frequencies, thereby "masking" the hearing loss. One of the few clues to a low frequency hearing loss is that the person has difficulty hearing in groups or in a noisy place."

My hearing loss is fairly mild so far, so there’s nothing to be done except get checked periodically. I go back in six months to see how I’m doing.