The trouble with insurance…

I’ve always been a very private person. I don’t know if it’s because of being late-deafened or if it’s just who I am, but it’s always been really easy for me to keep any and all matters of the heart very close to my chest.

I’ve had difficulties deciding if I should post this blog, simply because I feel it’s a private matter. But if I’m going to be honest about this journey I’m on with my deafness (and now hearing with a cochlear implant), then I know I should shove this out in the open. I certainly don’t post this for myself, but because I want any struggling deaf or cochlear candidate who reads this to know that I struggle right along with you. You’re not alone. We’re all pushing through life best we can, and it’s so so important that we keep a positive outlook and believe God for the best.

I know, I know, you probably wonder what kind of struggles can I possibly have now that I’m no longer facing deafness but hearing with my cochlear implant. I’m right there with ya. I thought my world would be nearly perfect after my activation, but apparently this world just isn’t perfect. Who knew?

This week I decided that it’s time to stop dragging my feet and to send my oldest child, my son now 5 years old, to get his hearing checked. Because my late-deafness can be hereditary (although I do pray constantly my kids didn’t get it and won’t ever), I want to be a well-informed parent and send him yearly for a hearing check-up now that he’s reached school age. Some schools do give basic tests, but I’d much rather send my son to someone who knows my medical history, my audiologist.

Before spending a bundle on a specialist, I have sought out medical insurance for both my kids.

I don’t work at the moment. My college degree is for a field that requires customer service, and because I’m not confidant in making phone calls and have to say so in job interviews, I have yet to be hired in my line of work. I was once employed by a company years ago, but when I stopped being able to hear over the phone (or to talk on a radio to guys on a construction site), I lost my job. Yeah I know that lawsuits are an option, but I’m not one to use that route.

After losing my job years ago, it was after that that I looked into the cochlear implant. I couldn’t get insurance through my husbands work, so I tried purchasing medical insurance privately, only to be denied by company after company because I was already a candidate for cochlear. And no one wanted to pay for that. I eventually found a government program to sponsor my cochlear implant surgery, which I’m ever grateful for, and sometime after I was approved to have insurance through Medicare.

How does that affect my kids?

This week I called the Social Security Administration, who funds my disability Medicare, and asked how to get my children insurance. I was told that while they can’t get Medicare, I could apply to get them Children’s Medicaid or CHIP, both government programs geared toward children. I applied to both programs, but it turns out that my husband makes just slightly over the income limit. CHIP recommended that I call the Social Security Administration to find out where to get insurance.

Obviously that brought me full circle.

I got a bright idea, remembering that neither of my children have any medical conditions. Being that, why would they not qualify for me to purchase private insurance? I looked around online, not finding a private company that listed quotes for only the children. The companies wanted me or my husband on the plan too. Since my husband’s work pays for his insurance, and I have Medicare, that didn’t really work for us. So I randomly picked a private company to call and see if they did have plans for children only, it just might not be on their website.

When I called the insurance company, they told me they didn’t service Texas, but gave me the number to the Texas Department of Insurance. When I talked to the lady at the Department of Insurance, it was there that I got the answer I sought. Apparently in Texas, private insurance companies cannot sell insurance to children only. A guardian or parent must be on the plan as well.

Basically it boils down to that at the moment I haven’t found a way to buy insurance or use a government program to get them insurance either. What does that mean? I have no idea!

I can’t say that I have thought much about the long term with this issue. I’m not going to worry, because I know that inevitably everything can work out the same way it all worked out when I had so much trouble getting my own insurance. Worrying isn’t going to help me out any. What I can do for today is call my audiologist and see if they can give me some sort of discounted price to check my son. If they want to charge me the full couple hundred that I know it can be, then I know there is an audiologist in my metroplex that does non-profit work for children, and he might help me out.

So there’s my dilemma, laid out before this blogosphere. I think everyone knows our government isn’t perfect, so there’s no need for a big long rant. I rather just remind us all that it’s so important that we not only pray for our nation and it’s leaders, but to do more and to educate ourselves about our government and do what we can to vote the best leaders in place and voice our opinions on changes we need made.

Ending on a positive note, I will say that I was pretty intimidated by the amount of phone work I had to do through this situation. I was fortunate to talk with people who all spoke very clearly, and did have several times when I had to ask someone to repeat themselves or slow down. All in all, I’d say I’m doing pretty good on this recovery road to hearing!

Chains of Habit

Life is 10% of what happens to me and 90% of how I react to it.

So says a favorite author and motivational speaker of mine, John Maxwell. I gotta give the guy credit. In my own life, I find this adds up to 100% of what’s happening to me here and now.

Habits die hard, don’t they? And the further I get down the road with my cochlear implant, the more I realize that the decisions I make right now will define the habits I create for my future. I know this is deep. So crazy deep for what I had originally envisioned as a lighthearted and not-so-deep blog. But if there’s one thing I haven’t been shy about yet, it’s the fine details of living through a deaf life and on through the recovery of a cochlear implant recipient.

Here’s the thing. I totally didn’t see all the psychological effects that this thing would have on me. Somewhere near the six month post activation date, I felt like I was hit by a freight train called Reality. Yeah, I was hit. Reality told me that the chain of habit that held me back, more than anything else, is…

Fear.

One four letter word. Awful, isn’t it?

What I fear most is being unable to hear someone. It’s fear that when someone calls me, I won’t be able to understand them. It’s fear that I won’t hear a passing car when I’m walking with my kids. It’s fear that I won’t understand someone in public and I’ll be humiliated by saying something completely off-topic. It’s Fear. Fear. Fear.

But I have a choice. The truth is that the fear is a product of living hard of hearing and deaf for a great many years. It’s evidence that something traumatic happened to me. The great big thing is that, just as Mr. Maxwell so eloquently spoke, the bigger percentage is in how I react to what happened.

A few months ago my son needed a doctor’s appointment to finish up his required shots for entering kindergarten. I called the office without much thought, and I was smacked in the face with what I felt was failure. For the life of me, I could not understand the office’s receptionist and had to have my husband call them back to schedule the appointment. Over the course of the next few weeks, I’d have my husband and my mom make phone calls for me, and I hardly answered my phone at all in those weeks. I didn’t think I could do it.

It’s so easy to fall back into patterns that are so known to us, and I wonder how often we even realize it. For weeks, I just sat back and accepted that one failure instead of jumping up to fight it. It was one failure. One.

This month I’ve been so busy I’ve hardly had a choice but to answer my phone. I’ve talked to my husband, my mom, three sister-in-laws, and probably several others too. Each phone conversation has been a little step for me, and I’m so crazy glad that I was pretty much forced to receive or make those calls.

The big thing about those calls is that they were to family members. Every one of those family members knows about my CI journey, so it’s easy if I can’t quite catch what they’re saying. They understand.

I made progress. I returned a call to someone that I have never spoken to on the phone. This is seriously the first phone call I’ve made to someone I don’t know since that doctor’s appointment. Unfortunately I got a voicemail. Or would that be fortunate? I was cringing when I made the call, quite literally petrified to even make the call, but the good news is that I did.

I’m telling myself right now that I will call the lady again. Or I will answer the phone if she calls back. It’s terrifying. It is. And I allow myself to think that it’s ok. It’s ok that I’m scared, since most all of us have a little hesitation at the unknown, but it’s really important that regardless of what I feel, I must choose to go forward. It’s a hard road to look past insecurities and take a leap to break those chains of habit, but if I don’t, I will miss out on even greater things with this implant. My cochlear implant can only do as much as I let it.

So for all you recipients out there who I know read this, let this be a lesson for all of us. Don’t let that measly 10% of what happened to us affect the 90% of what we can choose to be.

The Big Decision Part 3

(Read Part 1 or Part 2)

There are several reasons I initially didn’t want to consider a cochlear implant (CI). I will admit that most of my issues with CI were based on facts from a decade before. But beyond that, the first and foremost reason that I didn’t want a CI was that everything that I had read told me that any hearing I had left in my ear would be destroyed upon having surgery for a CI.

When CI was recommended that day by my ENT, my thoughts were I’m only 27. To me, that’s pretty young. What if five years from now, doctors can do some sort of surgery or procedure that doesn’t kill any hearing I have left? I mean, if they destroy my hearing with a CI and it doesn’t work or I don’t like it, there’s absolutely no going back. Do I want that?

And I didn’t want that. Who would?

The other reason I didn’t want CI stemmed from the fact that I knew someone who had a CI. And from what I could tell, that person communicated about as well as I could if I had just got some hearing aids at that time. Granted, the person I knew who had a CI had the surgery done a decade before I sat in my ENT’s office that day.

Raise you’re hand if you know that technology advances nearly as fast as we breathe?!

Raise your hand if you realize that a CI is a piece of technology?!

Let’s just say both of my hands were in my lap the day I was first recommended to get CI, because I was completely oblivious to all that. And honestly? I’m very glad I chose that day to adamantly tell them no. I’d never worn any type of hearing aid in my 27 years, and I see now that it was a big step for me. The type of hearing aid I would have to wear was over the ear and a hey-look-at-me-and-my-huge-hearing-aid-so-obviously-I-can’t-hear-very-well type of thing. To someone who has worn hearing aids for years, it’s no big deal. It’s like wearing your glasses to the store on a day you don’t feel like sticking in contacts. But for me it was like wearing glasses for the very first time in public. It was a big deal.

The ENT and Audiologist I saw that day (who are not the same ones I now see for my CI) clearly thought I was a little mental in wanting only hearing aids, but I was ok with that.

I was eventually sent by DARS to an Audiologist on my side of town to be fitted for hearing aids the following summer, in 2008.

I distinctly remember walking out of the Audiologist office the day I got my first set of hearing aids. The freeway ran right in front of the office, and it was amazing to me to be able to hear cars driving by. I would later drive to a local store and jump back about three feet when I was assaulted with the noise of the doors sliding open. It was overwhelming to me.

Hearing aids helped me much more than I had expected. They really did. Looking back, I realize how much my life would have changed for the better if I’d got them after that first hearing test as an adult. Sure, they didn’t bring back every bit of hearing, but the fact that they helped at all meant that my life was better because of it. You can bet that I had a very big moment when I realized I should have said years prior to that, Who cares if anybody knows I can’t hear? I don’t! I need help, and these hearing aids will help! But me, being me, cared too much what people thought.

Let that be a lesson for you. Sometimes when we care too much about what other people think, we miss out on a better life than we could have if we just didn’t let it bother us. Something I still need to hear. Even today.

The Big Decision. Part 2.

(Part 1 can be viewed by clicking here)

When I went into my first ENT’s office in October of 2007, my mission was clear in my head. I couldn’t hear my fifteen month old son’s laughter anymore, and I couldn’t hear my newborn daughter cry. I wanted hearing aids.

I had been told some years before that hearing aids would likely never help me. But let me tell you now, that when you’ve gone from about a thirty percent hearing loss to about seventy percent? Most anything is going to help at that point.

Here’s a not-so-funny story. When I went into the ENT’s office, the first thing they wanted to do was to try and figure out the reason for my hearing loss. I know my loss is hereditary, and I know my dad had been seeing doctors for decades relating to his own hearing loss, with no cures to be found, so I was mostly just humoring the ENT. The ENT ordered an MRI and bloodwork to be done, hoping for some sign or clue as a way to fix my issue medically. Because my daughter was only two weeks old at this point, I had been told to wait another week or so before having my blood drawn for the bloodwork, but was informed that the MRI was safe to do immediately.

So my mom and I head to the lab a few days later, intent on having my MRI done. We sat in the waiting room for a while, and when my name was called, I passed my two week old daughter to my mom and promptly headed to a small dressing room. An MRI is done by using a magnetic field, so I was told to take everything off that had any sort of metal on it, and given a hospital gown. Earring, rings, headbands, or any type of metal is strictly forbidden when having this test done. And after removing all my metal pieces, and dressing as they had indicated, the nurse comes back to my dressing room and escorts me to the MRI room. I was stuck inside the little capsule-like area for about an hour, trying not to hyperventilate from claustrophobia, and before I knew it, the test was over. I re-dressed and immediately was able to return to the waiting room and hold my daughter again.

And here’s the kicker. The nurse followed me back to the waiting room, and spoke with my mom and I for a few moments after the test. She informed us that they’d send the results to my ENT and that it would be ok for me to resume nursing after forty-eight hours.

I said, “Uhh, what’s that?!”

Yeah. No nursing after an MRI for 48 straight hours. It must have been one teeny tiny detail that my doctor apparently forgot to inform me of, which is weird considering that I had my two week old with me when I went to the ENT’s office. I was one very unhappy mother! Fortunately for me, I had plenty breastmilk stored already. Unfortunate for my daughter because she’d rather have starved herself than drink from a bottle. I am happy to report that she’s reached a strapping three and a half years of age, and has nearly healed from this very traumatic experience (although I still blame this incident as the reason for her fear of abandonment if I am more than ten feet away from her).

Back to the bigger picture.

Even after the bloodwork, and in addition to the MRI, the ENT could find no reason as to why my hearing loss was progressive. We knew what caused the hearing loss, and that it’s a sensorineural hearing loss, dealing with the nerves within the ear and their lack of performance so to speak, but we’ve never figured out why those nerves stop working. It’s obviously a gene passed from parent to child, sometimes genes that manifest later in life, in our teens, while other times those genes lay dormant and never cause hearing loss at all. Even if I did submit myself to be tested genetically, there’s never a guarantee that anything can be fixed. We’d learn the name of the gene maybe, but we wouldn’t have a way to medically fix it yet.

My ENT’s office told me that my best option would be a cochlear implant, and strongly recommended that I consider it.

But I was adamant.

I didn’t want one.

The Big Decision. Part 1.

Most everyone that I am acquainted with knows that I was, at some point, a person with hearing loss. Heck, there’s a lot of people that I don’t know who are aware that I had a hearing loss. But when I started blogging over a year ago, I had already made a decision. I would definitely have a Cochlear Implant surgery, and I had even, 6 months prior to this, begun the very long process of awaiting approval for it through a state program.

What most people don’t know about me, is that making the decision to get a Cochlear Implant was not an easy one. It was actually one of the most difficult decisions I’ve ever made.

And this is the story about my decision.

I grew up hearing perfectly normal, as most of you know by now. I don’t know at what age that my hearing began going downhill, as gradual as it did, but I was very protective of it. I started realizing in my early twenties that people around me, ones who knew me well, started slowly making accommodations for me. They stopped calling out to me to grab my attention, but rather started tapping my shoulder or waving their hand so that I looked at them. My immediate family and in-laws all knew my dad, and I know that they recognized the same hearing loss signs in me.

The weird thing was that I didn’t. Or rather, I refused to. For reasons that delve into my own spiritual life, reasons that I won’t go into right now, I’ll just say that I unrealistically thought that if I didn’t talk about my hearing loss, that it wouldn’t be there. That it would just go away. And it took a very long time for me to understand that, by refusing to deal with the situation, I caused a lot of unintentional stress on myself, my husband, and our whole family.

For years, my mom had gently prodded me to go get my hearing checked, to at least consider hearing aids, and I just adamantly refused to do so. I will admit that part of me was still growing up. I still knew everything (although once I hit 25, I realized that I really didn’t know it all) and I was adverse to doing something that my parents were telling me to do. Know now that anyone who gives an adamant opinion that something should be done one way, means that I will find a way to do it differently. It’s kinda funny, yes, but it’s also something that’s just ingrained in me, and I’ve had to work very hard over the years to change my attitude behind that.

I remember going to a local Jone’s Hearing Center for my first hearing test as an adult. I was only about twenty-one or so. The first thing they did was give me a hearing test. I honestly feel sorry for the guy who did my test. After I came out of the testing room, he sat me and my husband down at a table, and showed us the chart that showed my results. Any control I had over my emotions went out the window with the first glance of that chart. By the time he told me I had a severe hearing loss and that hearing aids would only help minimally (in his opinion), I had completely given up on controlling the tears. The man stepped out of the office and my husband just rubbed my back as I broke down in uncontrollable emotions. I didn’t get hearing aids that day or any day following. I couldn’t even bring myself to think about my loss for some years after, much less deal with a hearing aid that I was told wouldn’t really help.

Skip a while down the road to when I had both my children, some six years later. I’ve written before about the time I finally realized I couldn’t hear my son laugh anymore. It was the final straw for me, and my hearing loss. I knew at that point, that whatever I had to do to hear even the slightest bit better, I would do it. There’s something to be said about a mother and her natural instinct to want to protect her kids. And I knew without doubt that it was my first purpose behind the motivation I suddenly acquired.

This time around, I went a different direction. Instead of walking into Jones Hearing Center, I went to an ENT (Ear/Nose/Throat) doctor. In case you’re in the dark here, I had previously only been to an Audiologist for that first hearing test. An Audiologist is not a medical doctor. A person gets a doctorate in Audiology, which is a technical field, not a medical field. An ENT, however, is a medically licensed practitioner who deals with hearing loss, in conjunction with other related issues. Don’t ask me why I didn’t go to the ENT the first time. My only thought is that I was just not as educated in the matter before then.

At the ENT’s office, I was sent out for an MRI and bloodwork, in a failing attempt to find a medical solution as to why I had a hearing loss. At twenty-seven years of age, I returned to the doctor’s office to hear the results of the tests, and it was then that I was finally diagnosed with the worst classification of hearing loss. They told me I had what is termed Profound Hearing Loss.

Stay tuned for more tomorrow!