Category: Fidos For Freedom

What’s Different? Not So Sure About This After All…

Published on by hearingelmo1 Comment

Saturday Chloe and I were both very excited about finding ourselves on the road to Fidos For Freedom in Laurel, MD, for training. We recently moved so that my husband wouldn’t have to travel 90 miles (one way) each day for work and have finally unpacked the last box. With no other pressing responsibilities or priorities in my way to keep me from attending training, I gratefully got up and prepared for a training class.

The closer we got to Fidos, the more Chloe whined. I love hearing her whine because it reminds me that I CAN. In a close environment like the car, I can always hear her “dog noises”. Sometimes outside or in the house I may miss that. (Part of the reason she comes to actually GET me for an alert…) By the time we parked, Chloe was practically clapping her paws together. (Well – yeah, that is impossible, but you get my meaning…)

After warming up on the training floor, Pat (Director of Training) set up some benches for a recall exercise. Now Chloe has recall exercises down and rarely breaks a “stay” command. I can turn my back on her, practically “hide” behind another client, stand 100 feet away, etc., and she will stay where I put her until called. This didn’t come easy for her in the beginning and she managed to cause many a trainer to pull their hair out. Pat had Chloe and 2 other dogs sit within the “box” she made with benches in the middle of the floor and we did a “regular” recall exercise. Imagine my surprise when Chloe broke her “stay” and headed right for me without being called. She responded to moving dogs around her instead of watching me. I put her back where she belonged and set about to try again. Pat was “speaking in my head” (via t-coil and the looped training room) that we should not be surprised if our dogs don’t respond as we expect because “SOMETHING IS DIFFERENT“. With that thought going through my mind I determined to watch Chloe’s body language more closely this time. As soon as I sat her down and went some distance I could tell she was nervous. Although she was staying in a “sit/stay”, she was juggling her body weight and fidgeting. Her ears were down and her eyebrows were crinkled as she looked at me across that distance.

Something was different. It was minor. But golly did it make the biggest difference to my otherwise well-adjusted hound dog! One minor change and she was unsure and ill-at-ease. Likely because I was making an effort to really pay attention to her body language more so than usual, I could tell that for the remainder of the training hour she was unsure of herself.

We approached those same benches later in the hour for an “under” training exercise. Pat advised us to remove correction collars because for many dogs this was “new” and we didn’t want to accidentally tug and give them even a minor correction. I removed Chloe’s leash/collar (and other than a quick interception as she made a bee-line for “her trainer”), coaxed her under those benches and through the exercise in a matter of minutes. Others may not have noticed. I did… because I was taking the time to notice. For even something that was “easy” for her… she was still trembling in approaching those benches. I could see the hair on her legs shaking. She was more confident because of my proximity, but still unsure of this “different”, staged set-up in the middle of the floor. These “different” exercises are good for our dogs. It helps them respond with more confidence when something happens out of the ordinary in public.

What’s Different?

It’s amazing to me how the smallest change in my environment can influence how well I hear. For example, having moved to a home with few carpeted areas, I’m dealing with hearing in an ‘echo’ and having some sounds “bounce around”. New place with no carpet – small change! Yet it still makes a difference in how well I hear.

Two men with very similar voice/speech patterns can be talking to me. Slap facial hair on one of them and I may have more difficulty understanding one over the other.

My new home has very narrow staircases. I can actually ascend and descend at a normal pace! The staircases at work, however? They are much wider and open, in architecture with higher ceilings. Both staircases take you up or down… but the wider, more open ones cause extreme vertigo while I can practically jog up and down the ones at home!

I can “circle left” on the training floor with Chloe and have no problems. “Circle right” practically knocks me on my butt though! When your world constantly defaults to spinning in a counter-clockwise direction, turning the opposite way can be problematic! I can go through revolving doors that go counter-clockwise. I have learned to avoid the ones that turn clockwise! Small changes can have a big impact.

Cumulative Effect of Small Changes

I try to be independent and confident. It’s one of the reasons I chose to be partnered with an assistance dog. I didn’t like having to rely on my family to tell me my phone was ringing or to pick things up for me that I dropped. I can be determined and full of “I am WOMAN – hear me ROAR” attitude and still find that small changes can have a cumulative effect on me. If I’m tired, sick, emotionally spent, stressed because of finances or work, “at odds” with a friend or family member, or haven’t given God the time of day lately, I find that the cumulative effect can really knock me off my feet (which sometimes may be quite literally!).

I’m a real believer in trying to recognize “red flags” and control what you CAN. Getting 8 hours of sleep every night for me is actually a main priority. I’ve had my peers ask, “How in the world can you get 8 hours of sleep EVERY night? Who does that?”

I do.

If I don’t get enough rest, it influences how well I hear and affects my balance. But ya know? As a friend recently emailed me and explained… “life happens” – planning, preparation, and “best intentions” sometimes fall short. Numerous “small” changes and differences occur in our normal routine that can ultimately have a big impact on how well we function – living with disabilities. I think we have to be on the look out for this cumulative effect. We may find we are getting sick more often. Perhaps if you’ve struggled with depression, you may find that you are feeling down more often than you were. Maybe you just NEVER feel completely rested.

Yes.

The reason you may not be hearing as well as you were (or whatever acquired disability you may be dealing with) may be that you simply need a new “map” (for those of you who are CI users), or a new hearing aid. Maybe your family have just gotten lazy and have forgotten that they need to face you. You may need to have a “family pow-wow” again. But sometimes? Sometimes we aren’t hearing well because all of these small changes have snowballed into a major cumulative effect on our hearing. Sit down and make a list. What changes have been going on in your life in the last week? The last month? The last year? You may find that numerous “small” stressors have taken their toll. Bramston and Mioche (2001) found that as people with acquired disability engage life with a higher stress level than someone without a disability, it may only take a small change to create problems for us. I think those of us who have lived with hearing loss for a longer period of time have discovered some tried and true coping techniques. In experiencing some “life happens” moments, we may even have a “plan B” set of responses that enable us to continue to live successfully and victoriously! The funny thing about life though? It likes to throw curve balls occasionally. We need to be wise enough to recognize a series of small changes have occurred that is keeping us from maximizing our potential.

Take a time out.

Regroup.

Ask for advice (and prayer).

Make any necessary changes.

Start again!

Don’t make the mistake of thinking you have this exercise “nailed” like Chloe did. One small change may make you realize things are not as they seem. The first flurry of activity and scrambling of peers may have you making a bee-line for your “mommy” too!

Denise Portis

© 2011 Personal Hearing Loss Journal

Bramston, P., & Mioche, C. (2001). Disability and stress: a study in perspectives. Journal of Intellectual & Developmental Disability, 26(3), 233-242. Retrieved from EBSCOhost.

Frost Heave

Published on by hearingelmo1 Comment

picture from blog post at: Herding Grasshoppers

I recently read a post from one of my favorite bloggers. I love Herding Grasshoppers and NOT just because her son is hard-of-hearing. She is witty, adventurous and “real”. I rarely walk away form reading one of her posts without a smile on my face.

She recently posted about “Needle Ice” and frost heave. I was very intrigued. I’ve seen frost heave when walking trails before, but wasn’t really aware of what it was I was looking at. After reading her post I immediately went to look for more information about this phenomena. Frost heave occurs when moisture-retaining soils freeze in cold temperatures. As moisture sinks into the ground the freezing temperatures cause the water to freeze into ice. When water freezes… it expands and creates pressure. The soil presses up and may expose the roots of plants and has been also known to bring rocks and pebbles to the surface. Take a close look at the picture. The ice crystals have actually brought small rocks and pebbles to the surface. Once this thaws, the rocks and pebbles are left on top of the ground. One would almost think someone had “planted rocks” in an area that may have once been clear of them!

What “Heaves” out of you?

I have given a lot of thought recently about what kind of thoughts and actions are seen in my own life when the going gets “rough“? When my life becomes saturated with a seemingly endless bombardment of trials, problems, set-backs, health problems, and struggles, I am often left pleading with God “PLEASE! Not ONE more thing!” But ya know something? God must know my limits better than I do. Because there have been some difficult times that I have prayed and pleaded “not one more thing – thanks so much“, only to have a blast of cold air on top of my already “saturated life”. Exhaustion, pain, fear, depression and plain ol’ “bad attitudes” may have HEAVED to the surface of my life. These things are usually hidden. Some of the heaving exposes some thoughts and actions that just aren’t pretty. Some of it is just “junk” and “rocks”. The “heave” may expose “roots” as well and leave areas of my life vulnerable.

This past summer, I was having a pretty difficult time. I was doing my best to stave off depression as it is an unwelcome visitor that worms its way into my life at inopportune times. I was to the point of pleading, “Not ONE more thing God – please! Hello? Are you listening?” The next day Chloe was hurt in the park. For whatever reason (as we often will not understand this side of  Heaven), God allowed ONE MORE THING. Chloe’s foot took a really long time to heal and I even had fears she would ever be able to work again. Yes, she is special to me because she is my hound dog and  “doggie friend”, but she really enables me to be more independent too! What would I do if her foot would not heal? During the months (yes you read that right) that followed a lot of “stuff” heaved out of that pressure and into full view – especially to my family. It wasn’t all pretty. I was cantankerous (a nice way of saying PAIN IN THE BUTT) and aloof. I knuckled down and did the things I HAD to, but did not exert myself to do anything else. I had a major pity party several months long.

But not everything that HEAVES out of our saturation point is bad. Sometimes we discover that in spite of disability – we are very ABLE. You learn pretty early on what you CAN do, and end up doing it really, REALLY well. My saturation points have received an extra dose of FREEZE and heaved up compassion for others, patience, encouragement, and determination. I may stand and look around at the defrosted ground and spy a rock here and there. But sometimes? Sometimes I see beautiful geodes or prisms. I’ve not discovered a diamond yet – but heck. I’m only 44. I’m certain I’ve a great number of frost heaves in my future. Diamonds come with maturity. (If you ask my family – I’m not exactly THERE yet).

Have you experienced difficult times? Things that have happened in a life that already seemed completely saturated with problems and struggles? Don’t fear the weather forecast of overnight “freezing temperatures”. Meteorologists are RARELY accurate! If they happen to actually nail it one time? Welcome the heaving frost crystals to the surface and determine to unearth GOOD THINGS. Prepare your heart in advance to showcase determination, patience, long-suffering, gentleness, kindness, and love.

Experience enough frost heave and you’ll find that the soil of your heart and life is well aerated and primed for Spring.

Denise Portis

© 2011 Personal Hearing Loss Journal

I’d Never Shave My Legs

Published on by hearingelmo5 Comments

You know? If I didn’t think what others thought of me was important… I’d never shave my legs.

I would throw my toothpaste away.

I would toss all of my bras.

After all, I do not do these things because smooth legs, peppermint breath and supported body parts do anything for ME.

I’ve heard folks say, “I don’t care what others think of me”. Oh really? If that were true, you wouldn’t have showered this morning and you’d be standing there in purple sweats;

and a red-checkered flannel shirt;

with one green flip-flop;

and one hiking boot!

Instead, your “outfit” (such as it may be) is color-coordinated to a degree. Your body odor reflects you care about hygiene.

OK. Maybe you are sitting there mentally clarifying that you may care what people SEE when they look at you, but – “I don’t care what people think of me personally”. Oh really? If that were true then when your spouse, teenager, co-worker, roommate, or walking buddy asked you this morning, “How are you?”, you would have responded with something much different than “I’m just great! How are you?”

Instead you would have thrown your hands up and said, “Well this is a POOPY day. My dog got in the trash this morning, my daughter forgot to run the dishwasher, I was running behind because I got up 20 minutes late, we were out of eggs so I had to eat CEREAL (face blanches), and I’m standing here with a wedgie if you MUST KNOW!”

But we don’t respond that way, do we? There are societal “niceties” that we adhere too. We know that, “Hi! How are you?” doesn’t mean that the other person really wants a play-by-play of how your day REALLY was. I don’t think that makes us liars. We are simply individuals that are part of a society that interacts somewhat superficially in our everyday greetings.

Yes – I know! There are some people we are just “straight” with and tell it like it is. But most of the time our interactions with others are not with those specific individuals. These special, specific individuals don’t care if we shave our legs.

Stay Positive, PEOPLE!

Take for example something that happened to me this past week.

I was out shopping and maneuvering cart, assistance dog, and SELF up and down the aisles. A woman noticed Chloe, my assistance dog. She came closer with real intent in her body posture and facial expression. I wasn’t getting really “friendly vibes” from her so instead of pretending to continue to shop so that I could keep an eye on her, I boldly faced her approach and waited to see what would happen. She made her way to my side with determination and pointedly read Chloe’s vest:

She then looked at the side of my head and noted my cochlear implant. She actually took two steps to the side to check out my OTHER ear. By this point… I’ll admit that I was a little intimidated!

She looked me in the eye and said, “So you need this dog yourself?”

Now you have to understand my IRE was already “tickled” and there was a part of me that wanted to respond:

“No, stupid. I bring this well-trained dog into public places because I like the attention. This cochlear implant and hearing aid? All for show, lady. As a matter of fact… (and I’d lean close to offer a conspiratorial whisper)… I. Don’t. Shave. My. Legs.”

But you know what? I care what people think of me. I care… because I care about others who have hearing loss. I care about others who live their lives with assistance dogs and service dogs. I want this ill-informed lady to walk away with a better appreciation for what I can do “in spite of“. So I plaster a semi-genuine smile on my face and gesture towards Chloe…

“Yes, I have a hearing loss and Meniere’s disease. Chloe alerts me to sounds I cannot hear, and picks up things I drop. Because of her, I can be out shopping without anyone with me and I never have to ask for help”.

Her face gets a lightbulb moment kind of look. “Oh I see”. She looks at me. She looks at Chloe. She walks away. I could still sense the disdain coming off of her. But at that point? It simply didn’t matter. I had taken a deep breath and responded in such a way that I remained a POSITIVE advocate for both people with hearing loss and people with working dogs. As she walked away I pinched myself to keep from stopping her to ask if she shaved her legs. I do admit that I leaned down to Chloe and scratched her head to whisper:

“Imagine that Chloe. It’s not even Halloween!” The witch with hairy legs walked away with some positive information about working dog partnerships.

We Need Each Other

I’m reminded time and again how much we need each other. I know a kindred spirit and dog-trainer who drove all the way to Frederick with her roommate who has a service dog to walk around the mall after my “incident” to show solidarity. These same people were all set to travel to Virginia to attend a vigil to protest that Andrew was not going to be allowed to have his service dog in school. Thankfully, the school board reversed their decision.

I know numerous trainers at Fidos For Freedom that spend countless hours training assistance/service dogs, training and instructing people… all without pay. They take dogs into their homes to spend countless hours OF THEIR FREE TIME, honing skills and modifying behavior so that a dog eventually makes an excellent match with a person that needs them. These are NOT people who “don’t have a life” either. They have families, jobs, pets of their own, ministries, hobbies, and goals. These trainers not only do not get paid, they rarely receive any recognition. They don’t do what they do for the recognition though. They do it because they love people, love dogs, and love to be a part of the connection that takes place between these matches.

I have another friend who constantly challenges herself by going back to school in spite of working full-time. She already has multiple degrees but she is constantly looking for ways to better herself so that she can better help others. She is heavily involved in hearing loss support, traumatic brain injury, enjoys wildlife and supporting her local zoo, and is an avid photographer. She has bi-lateral cochlear implants, but you’d never know she had a disability. She doesn’t live like she has one. She, like many others I know, live life in all the ways they are ABLE and don’t focus on the disability. (I love her… can you tell?)

I know people who volunteer and give of their time, resources, and talents to numerous non-profit agencies. Their goal is to serve their fellow man. They want to make a difference. They DO make a difference.

It takes just one BAD example of a person with a disability or special needs to sort of “spoil it” for the rest of us. As for me? I don’t ever want to be that person. I certainly take the opportunity to “belly-ache” to select individuals who know I just need to “vent”. I know – that THEY know – I may belly-ache about an encounter in private, but in public I will put on a brave face. They let me vent… and then hand me a razor.

Yes… we need each other. Don’t ever think that what you do – does not in SOME way reflect on others. As a person of faith I try to be extra careful. After all, I cannot go around “claiming faith” if I live as if I don’t have any at all. If I express that faith is important to me, I need to remember that my words, actions and life reflect how others see Christ.

Denise Portis

© 2011 Personal Hearing Loss Journal

Yup, I talk to My Dog. Don’t You?

Published on by hearingelmo6 Comments

I’ve embarrassed myself a couple of times in Wal-mart recently. I’ve caught the HUGE smiles of people passing by or catch the gleam in their eye as I look up and around. You see? I talk to my dog. It’s not just because she’s an assistance dog either. I talk to all of our dogs. But Chloe is the only one I talk to in the middle of Wal-mart, for obvious reasons.

People have heard me ask, “Chloe do you think the guys will want french-style green beans this week or do you think I can sneak some fresh green beans into the menu?” Chloe cocks her head and wags her tail. For some reason I’m able to make a decision. It’s not that I interpreted her body language to mean, “I’d go with the French-style, Denise”, but it helps to talk to her.

I caught an actual chuckle when I exclaimed to Chloe, “Chloe! Look! Can you believe it? It’s an Elmo Christmas SNOW GLOBE! Hope Santa knows I’ve been very good!” Chloe bumps my hand and wags her tail again. She thinks I’ve been very good.

Paying Attention

You might think I’m crazy. But actually… I’m helping Chloe keep her attention on me. If you look at a dog’s eye-level at Wal-mart, you will see things that aren’t as readily apparent to those who are taller than 3 feet. Stuffed animals, “Roll Back the Prices” price tags that Chloe thinks she really should swipe off the shelf and hand to me… all kinds of tempting things. By talking to Chloe, she pays attention to me. When I have a dizzy moment, I say, “Whoa….” and Chloe knows to take a step out of heel to make sure she can move if I actually fall. It’s important for Chloe to pay attention to me.

That’s why it is really not a great idea for people to “ooo and ahhh” over an assistance dog/service dog in public. You are getting the dog’s attention. They can’t help it. They KNOW they are beautiful/handsome and wonderful. Chloe’s vest actually has a tag on it that says, “Do not distract”. I realize people mean well, but if I’m having a bad balance day AND I don’t hear your “oh what a pretty dog” remark, I could fall just because Chloe wants to go and greet you.

What Distractions Can Do

I had this happen in Best Buy once. I was on my knee, balancing to see something lower, and someone got Chloe’s attention. She broke her heel to stand and WAG at them, and I fell right over. I laid there blinking up at the man whose eyes had widened in horror. “Gee, I’m sorry Miss. I can’t read, obviously”.

“Oh, that’s OK. I just wasn’t prepared”, I replied cheerfully from the FLOOR. I waved his hand away and said, “Actually she needs the brace practice, so no problem”. I had Chloe help me up, and the man again apologized. He even had tears in his eyes. I laid my hand on his arm and said, “Honestly, it’s no big deal. I sprawl at least once a day!” He wandered away unconvinced.

I do understand that seeing a well-behaved, dog identified as a “helper dog” can be really hard to just walk by for those of you who love dogs. I actually do not mind being stopped and asked about Chloe. However, it is really helpful if you talk to ME and not Chloe. Feel free to ask people with assistance dogs if you can pet their dog – because some people do not mind at all. I’m not those “some people” (grin). I will always (pleasantly) say, “I’m sorry she’s working and I’m trying to keep her from being distracted”. Be prepared for some people to say “no, I’m sorry”. They appreciate that you think their dog is “swell”, but it really doesn’t do the dog or the owner any good to constantly allow people to pet them in public. Many people use service dogs for disabilities that are invisible. It may not be easy to pick that up and asking to pet the dog might put the owner at risk.

If we meet someone we know real well, I actually do allow Chloe to say a quick “hello”. She is very good about giving quick kisses and then stepping back into heel. To do so is my choice though. Those who know me well, actually know not to ask on rainy days when they know my balance is going to be really bad. When Chloe sees someone she knows in public (usually folks from our small church, or close friends), she will do better to say a quick “hello”, so that she can get back to work. It is like identifying someone she knows from her “pack”.

Chloe’s Safety

By talking to Chloe in public, I let other people know she is there. Now that I’m completely independent and don’t have to worry about what I’m not hearing or dropping things I can’t pick up, I even head out on really busy shopping days. Not on purpose mind you! I’m not completely nuts! (grin) But I’ve been in a “crush” of people and talked to Chloe non-stop so that people would know she was there.

We made the mistake of going to Hershey’s Chocolate World the weekend after Thanksgiving this year. We go there a lot, but this was the first time it was literally wall-to-wall people. I couldn’t have fallen down if I had wanted too! I was completely surrounded by people! I talked to Chloe non-stop so that people would know she was down there. It’s hard to see someone 3 feet tall! I would even stick out my hand in a real “crush” and say rather loudly, “Excuse me… service dog coming through!” I was so intent on keeping Chloe safe by talking to her and watching where we were going that I mis-placed my daughter. I looked up and could see my husband in the distance, and my 6’3″ son was easy to spot… but where was Kyersten?

My heart was pounding and I held my arm out and just kind of plowed through to the nearest wall. I frantically searched for her little 5’3″ self and could not see her anywhere. I was scared spitless! I reached for my phone to see if I could send an S.O.S. text to her. Just then I felt a hand on my elbow. I whipped my head up and stared right into the smiling eyes of my daughter.

“Kyersten! I lost you!” I managed to sputter out. (It was hard, because I was spitless, remember?)

She rolled her eyes, and gave my shoulder a squeeze. “Mom. I’m 20-years-old. It’s not like I’m lost. If I lose track of you guys I’ll call. You are kind of hard to lose track of” and she gestured down to the red assistance dog complete with holiday jingle bell.

Freedom

You may run into me in a store, restaurant, movie theater, post office, pharmacy or doctor’s office with Chloe. You may HEAR me before you see me. I talk to my dog. But you know something? It’s not ONLY because it helps her pay attention. For you see… Chloe is the reason I’m alone in a store, restaurant, movie theater, post office, pharmacy, or doctor’s office. Before being matched with Chloe, I rarely went out alone. Talking to Chloe is a reminder to me… I’m in public, enjoying life, and yup! I’m talking to my dog. Don’t you?

Denise Portis

© 2010 Personal Hearing Loss Journal

Meniere’s Rant

Published on by hearingelmo3 Comments

I don’t usually go on and on about Meniere’s disease, but I’ve had a pretty bad week with the “little Rascal”. For one thing, I count myself extremely BLESSED as I seem to have only one major trigger. Rain. I know plenty of other folks who have other types of triggers that include flying, change in altitudes (vacations in the mountains!), alcohol, head cold or allergies, chocolate (oh my!), smoking, and even certain foods! So since I only have “rain” as a Meniere’s trigger, I really try not to complain very much.

A fellow Meniere’s patient pointed me to a terrific support group through Facebook today. I have already found a lot of great information. If you belong to Facebook… check it out here. There is a simple but helpful Meniere’s organization on the Internet which can be accessed here. A website providing basic information and clinical trials can be accessed here. My favorite website is the National Institute on Deafness and other Communication Disorders (NIDCD). They have a terrific Meniere’s Disease section that can be located here.  Thanks to the Meniere’s disease Facebook page, I was even directed to our very own Super Villain – Count Vertigo. Who knew?

Being a former farmer’s kid and because I still have numerous relatives that I love in a farming community in SE Colorado, I try to never belly-ache about the rain. Rain is necessary and in most cases a “shower of blessing” to farmers, ranchers, and those who get tired of moving their sprinklers around.

But this week? SIGH. I’ve had some bad experiences. On a rainy day, I fell in the laundry room this past week and happened to find the only exposed nail in the “unfinished room”. Thankfully, I hit it square and impaled myself through the fleshy part of my arm. I was able to pull it clean away and stop the bleeding very quickly. A quick verification that I had a tetanus shot recently, a severe pounding with the hammer on that (stupid) nail, and I escaped “nearly” unscathed.

This morning my alarm clock went off and my well-trained assistance dog was in my face immediately to “kiss me awake”. As soon as I sat up I knew it was raining outside. When the room spins the moment I become vertical, I rarely need to look outside to verify that it is raining. I didn’t fall until about 10 AM. Unfortunately, when I lost my balance I was on the stairs with my arms around a large load of laundry. Missing three steps means I have a pretty good chance of landing “gracefully” and still on my feet. Missing four however? Not a chance. I lay sprawled on the floor staring at the ceiling and a concerned hound dog with dirty laundry scattered all around me. I have a standard set of “OK, I’ve fallen – now what?” questions I ask myself.

1) Am I conscious? (duh)

2) Is anything broken?

3) Am I laying on anything important (like a dog or a cat)

4) Can I close my eyes and open them again and stay conscious?

5) Do I need to call a family member?

If I can answer No, No, No, YES, and NO… then I simply sit up and take my time to re-group. This time I didn’t hit anything other than my elbow on the way down. I may or may not be sporting a pretty blue spot tonight.

There is no cure for Meniere’s Disease. (Hope you aren’t new to the disease and I just depressed you for the remainder of the year!) There are some treatment options, but they only work for “some”, and all the options only serve to reduce the severity of symptoms or number of attacks. NIDCD lists several treatment options that include:

1. Medications – Prescriptions such as meclizine, diazepam, glycopyrrolate, and lorazepam can help relieve dizziness and shorten the attack.

2. Salt restriction and diuretics – I take a prescription diuretic and do restrict my salt. I’ve not seen any real difference, but continue to do these in case it has a cumulative effect.

3. Cognitive therapy – Doesn’t treat the Meniere’s but does help the patient deal with anxiety and coping with “future attacks”.

4. Injections

5. Pressure pulse treatment

6. Surgery

7. Alternative medicine. I take Manganese (5 mg) and a B complex vitamin. Researchers have found that Meniere’s disease patients have a Manganese deficiency. Manganese can be hard to find. (Magnesium is plentiful, but you’ll have to go to a specialty store or order online to find Manganese). Other treatments include acupuncture, acupressure, tai chi, and other supplements. Always tell your doctor if you are taking other supplements as many may interfere with prescription drugs.

This past year, Gene Pugnetti was surgically implanted with a special cochlear implant to treat his severe Meniere’s disease. You can read about the latest update here. The original story can be read here. I will be looking for updates about Gene and wish him the best!

Some things I have learned that help me with Meniere’s disease:

1. I take 5 mg of Manganese and a B-complex vitamin.

2. I limit my salt and take a prescription diuretic.

3. I take 50 mg. of Benedryl before bed.

4. I have inexpensive molding about 4 feet high along the hallway, kitchen, and bedroom. At night, if I have to get up in the dark, I only need to feel my way around the room to discourage getting disoriented. Without it, my eyes “play tricks on my brain” about how close the floor, walls, and doors are as I am struggling to see in the dark. The molding has allowed me to move about the house as needed in the dark without injury.

5. I never EVER go down the stairs without holding on to something. If I have something in my arms, I balance the “something” on one hip. On bad days, if it takes me 3 or 4 minutes to get down the stairs instead of 30 seconds, that’s OK. Patience is a virtue… and may prevent broken bones!

6. I avoid looking directly at ceiling fans or other contraptions that “spin”.

7. I do not ever ride roller coasters, or rides that spin in any way. If I am “spun” into an unconscious state, it is rather difficult to hold on! I made a promise to my family after “Space Mountain” in 2002 to avoid these rides for the remainder of my life. I’m finding it isn’t a difficult promise to keep.

8. I stand and sit with pre-meditation. To simply “pop up” or sit down quickly only means I will experience dizziness. Why bother when moving with a little more care will help to avoid it?

Hopefully this information may be of use to someone! I’m very thankful Meniere’s disease rarely necessitates I write about it!

Denise Portis

© 2010 Personal Hearing Loss Journal

Exercising My Right to VOTE

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Since my husband wasn’t going to get home until around 7:15 and the polls are crowded right before they close, I chose to walk to our polling place today. It was a beautiful, crisp, cold morning and required very little encouragement to get Chloe to make the long walk to go vote.

About a block from the school where we vote I stopped to get Chloe’s vest out of my bag and “got her dressed”. She looked at me sort of quizzically for I don’t usually “dress her for work” on a walk. She was immediately “all business” though and stayed in a proper “heel” instead of her “I’m on a walk meandering trot”. I entered the school cafeteria and stopped to remove gloves, scarf and unzip my coat. (Hey! I said it was CRISP!) While waiting in line a nice lady asked if she could pet Chloe. Chloe’s body always wags, “yes, please”, but I have to ask people not to pet her in vest in public places. Days my balance is “off” only requires her reaching for a friendly hand that I’m FLAT ON MY FACE. So I pleasantly explained why I couldn’t allow her to say hello, and continued waiting in line.

I didn’t have to wait long. Mr. “I really need a smoke” was sitting waiting for me and motioned me to come over. In this big cavernous, noisy room with hard floors, walls and high ceilings, I had to struggle to hear. Ever try to speech read someone who was chewing gum like a cow? This poor guy really needed his nicotine fix. I asked for a repeat on the birthday question 3 times. I finally pointed to my mouth and said, “I can’t understand you I’m afraid. Would you repeat that once again?”

I guess it was the hound dog head resting on the table top, bright bling on my CI and the fact that I asked for a repeat 3 times that he finally got that “light bulb” look on his face. He looked up, stared me square in the eye, moved his gum to his cheek, and clearly enunciated, “Birthday month and day?” Well WHEW.

Now I headed to a shorter line waiting for a poll volunteer to show me to a booth. The lady standing there waiting with me seemed friendly. She looked at Chloe, looked at me and said, “Oh wow! I saw you speaking to Earl! I can’t believe you are deaf because you speak so well!”

“Yes, most Americans with hearing loss actually speak very well and do not use sign” I explained.

We stood there waiting silently but I could see a funny look on her face like she was about to bust. The polling folks aren’t really suppose to have a conversation with you. Since I was ‘ready for it’ though I heard her whisper, “My husband can’t hear a thing even with hearing aids. It’s driving me bananas“.

Since she was trying to be unobtrusive I lowered my voice and said towards the floor, “Well I hear voices very well now that I have a cochlear implant. They require a very simple surgery and most folks I know do really well. You should have your husband look into it”.

She looked thoughtful and motioned to another worker to show someone BEHIND me to the next open booth. Again talking to the FLOOR she whispered, “Well I don’t know if he’d go for that”. (pause) “Does the dog come with the implant?”

I looked up to catch the wink so I just grinned and shook my head. “Sadly, but no!” I whispered back. I told the floor, “Well you should check into the Hearing Loss Association of America. They have a terrific website. You both could find out much more”.

Finally she could not delay any longer and showed me to an empty booth. “Push the card all the way in until you hear it click”, she said in a normal tone of voice. She turned to leave me to my voting and whispered, “Thank you!”

I took 15 minutes to vote and Chloe and I both got a sticker. (BIG GRIN)

On the walk home I couldn’t help but send up a quick prayer for this lady and her husband. Remembering how hearing loss once drove my own loved ones “bananas“, I really felt empathy for them. Hopefully she will follow through and find out more information about HLAA. I had to grin to myself as we headed up the last big hill towards my neighborhood. I went out to vote and ended up being pro-active about my hearing loss once again.

Funny how our own circumstances allow us to do that, isn’t it? I felt overwhelmed with gratitude to be able to have a whispered conversation to someone random that obviously had a “need”. It reminded me of one of my favorite “lists” that I periodically put around the house when needed.

Alice Gray‘s “Treasures of the Heart” seminar:

How to Put a Wow in Every Tomorrow:

1) Develop an attitude of gratitude: When you are experiencing tough times, remember the blessings in your life. It’s like sprinkling sunshine on a cloudy day.

2) Encourage others: When someone has a goal, most people point out the obstacles. You be the one to point out the possibilities.

3) Give sincere compliments: We all like to be remembered for our best moments.

4) Keep growing: Walk a different path. Take a class. Read something inspiring.

5) Give the gift of forgiveness: Forgiveness is a blessing for the one who forgives as well as for the one who is forgiven.

6) Take care of yourself: Exercise, eat a healthy diet, sing, and dance a little bit every day.

7) Do random acts of kindness: The most fun is when the other person doesn’t know who did it.

8.) Treasure relationships: Eat meals together, take walks, listen. Share laughter and tears. Make memories.

9) Share your faith: You can wish someone joy and peace and happy things, but when you share your faith–you’ve wished them everything.

Hope you went out to vote today!

Denise Portis

© 2010 Personal Hearing Loss Journal

We’ll Never Be the Same

Published on by hearingelmo2 Comments

“observe a leaf falling from on high…listen to the sounds it makes as it touches branches on the the way down…then the sound of landing. I didn’t realize until today that I can do that. I cried. Good thing no one was there. 🙂“

A friend of mine penned the above words in her “status message” on Facebook, yesterday. Honestly? When I read the words, goosebumps erupted on my arms and neck and I felt an overwhelming emotion well up in my chest. I sat at my desk and “cried like a baby” if you must know. Deep, wrenching sobs that shook my entire body and caused my assistance dog to lay her head on my knee and look imploring up at me … asking to “help” as best she could.

Why?

Unless you’ve lost something and regained it through surgery, rehab, hard work, and perseverance you could never understand completely. When an individual chooses to be surgically implanted with cochlear bionics, they can only do so after their “natural hearing” has reached a point that other assistive devices provide little help. Many resign themselves to not ever hearing again “this side of Heaven”. To regain that and as an added benefit, the ability to interact and communicate with others, strengthening old relationships or forging new ones, repairing self-confidence and esteem, all “sweeten the deal” and make the decision even more life–changing. For some, aural rehab goes very quickly, while for others that first year can be frustrating and challenging. In the end, we’ll never be the same. We will never take for granted our hearing and the ability to listen to the sounds around us. One becomes a part of a “family” of other folks who are “hearing again” as well. We get it. We understand. We’ll never be the same.

The Internet has changed our world, but there are some unheralded benefits of having the Internet. It has provided a connection for people with disabilities, health concerns, or chronic illness. Support groups and message boards exist for every type of health issue.

Those with the invisible illness/disability of fibromyalgia or chronic fatigue syndrome are connected to others who live with the knowledge that today things might be pretty good – but tomorrow you may be bedridden. Those with chronic, hard-to-explain pain disorders can communicate with others who live the same life and share the burdens and triumphs of living with a disease that WILL NOT squelch their inner spirit.

Those who have a loved one that has survived a traumatic brain injury can find others who “miss the person they once loved” and are “learning to love the person left behind”. They can share successes and set-backs, fashioning relationships with other parents, spouses and loved ones who understand because they LIVE IT.

Individuals who live with mental illness can connect with others who understand the stigma and prejudices. They can connect with others who are SURVIVORS.

People (finally) diagnosed with the new epidemic of Lyme disease can find a community of people who have learned how to talk to their doctors, discuss holistic practices that provide relief, discover medications and lifestyle changes that can make a difference in the number of recurring flares, and how to remain positive and proactive in living with the illness.

I have a cousin in the latter stages of treatment for breast cancer. Her “voice” has changed throughout this process and I can tell by reading her penned words that she has a new fascination, anticipation and appreciation for life. She will never be the same.

I think we are slow to recognize how hardship, tragedy, trials, and adversity can provide the surprising and unexpected benefit of a permanent change in hearts, minds, and bodies. For many of us our very foundation has been rocked and rebuilt. Life is different. Sweeter.

We’ll never be the same.

Denise Portis

© 2010 Personal Hearing Loss Journal

Prepared For It?

Published on by hearingelmo5 Comments
We simply do not take ANY chances

“The dog days of summer”… whew! Has it ever been hot here in my home state! I could take a repeat of last winter’s snows, believe me! I’ve always preferred 3 feet of snow to 3 weeks of 95 + temperatures! Because of the heat, Chloe and I have been forced to walk pretty late at night. At “twilight” it is dark enough that it isn’t safe to be walking. At least not in my neighborhood where people go 40 mph in a 15 mph zone.

To placate my husband, I make sure Chloe and I are decked out in a number of things that are reflective. I wear a reflective vest, and Chloe a reflective collar. The leash I carry actually lights up near the handle end, and it also sports “lighted bling” of various kinds. I’m sure from a distance we must look like Santa and his team of reindeer! Small price to pay … this GLOW IN THE DARK preparation — for a safe walk! I didn’t anticipate having to walk so late at night, yet preparation has made all the difference.

I’m safe.

It is cooler.

We walk faster.

No… really! Not sure why that is, but the big “loop” we walk is usually 7-8 minutes faster than if we walk when there is more light. Perhaps because we aren’t having to stop to get Chloe re-collected after startling a bunny? Either the bunnies have an early bedtime, or they simply are not seen as easily.

Just Because it Wasn’t Planned, Doesn’t Mean You Don’t PREPARE

I know of very few people who planned to acquire a disability or to be diagnosed with chronic illness. I have become acquainted with people who have progressive hearing loss or are deaf, people who have lost their eyesight due to Usher’s Syndrome, people with MS, Parkinson’s, Meniere’s disease, and Chronic Fatigue Syndrome, people with fibromyalgia and many others who find that they are living a life they didn’t exactly “sign up for”.

So what do you do?

Give up? Try to get a refund? Sue?

Well… most of the people I know “deal with it”. They do so in their own way, and for some it may mean working through it. Working through it for some people may mean that they have a pretty long period of time either denying the problem or grieving the problem. Each of us do this, but some spend more time on these steps than others. That’s OK. I get really aggravated when I hear someone tell a person learning to live with changes that affect their life that they need to “get over it” and “get on with life”. I guess I’m aggravated because the person saying that usually does not have the same diagnosis as the person they are preaching at! However, I do sometimes see someone who DOES share the diagnosis “preach” the same. Just because YOU did not grieve your hearing loss — or whatever it may be that you are dealing with — doesn’t mean that other people deal with the loss the same way.

Once you do work through that process, however, you can start to prepare. Preparation is key. For me preparation looks like this:

1. I always have #13 hearing aid/cochlear implant batteries. I carry some in Chloe’s vest, the car, my pocket book, and Chloe’s treat bag. I have them in my bedroom and my office.

2. My cane is right by the front door. If it is rainy or if there has been a pressure system come into the area, having my cane “handy” insures I actually take it with me out the door. No one “messes” with where I put my cane. If you move it, you risk life and limb (grin).

3. I leave early to arrive early. Let’s face it. It takes me longer to get to where I’m going. For one thing I travel with an assistance dog, and I have to spend a couple of minutes allowing her to “do her thing” before going into a public place. I have to load her up safely in the car. I have poor peripheral vision on one side so I drive the speed limit in a world where no one else does. I allow extra time to get to places ON TIME. Sure! I’m early sometimes, but I am rarely late.

4. I never walk out the door without my cell phone… and I am ZEALOUS about making sure my phone has a full charge. As a matter of fact… I have my cell phone on my person almost every waking moment. (Perhaps something to do with having a kid in college in another state now?)

5. I make it a PRIORITY to get eight hours of sleep. This is so important, I schedule myself to get at least eight hours. Heck! I’ll be honest… I actually do better with nine, so if I can schedule that I do! Having a cochlear implant is terrific! I love being able to communicate without having to actually be in the same room with someone. I’m fairly certain it’s not AGE… it simply takes a LOT of brain power to communicate now! Who’d have “thunk” that communicating with a hearing loss could be so exhausting. It doesn’t seem fair that no calories are burned! It is mentally (and sometimes emotionally) exhausting to communicate with hearing loss. If I get less than eight hours of sleep, it is very noticeable that I do not communicate as well. Fatigue will do that.

6. I make sure I travel with information about service/assistance dogs. You never know when you may have access issues. As a matter of act this has been a pretty prevalent part of our lives lately. (See the links here (with a video too!), here and here).

7. I avoid sodium, limit caffeine (something I find nearly impossible), and take Manganese! These three things I have found to be very helpful in limiting the effect Meniere’s disease has on my own life. Manganese is hard to find too! (Magnesium is plentiful… Manganese not so much). Remembering to make these “BIG 3” a priority, really makes a big difference in how severe my symptoms may be when an episode hits.

8. I memorize and use lines that best describe my communication issues and how I can solicit positive responses. These include:

A. You speak wonderful English! However, I have a hearing loss so I have trouble with accents. Could you repeat that a little slower please?

B. I have trouble understanding in background noise. If you would face me when you talk, I should be able to speech read and hear with my CI (point to it) and hear you much better!

C. I missed what you said. What I heard was (and I repeat the parts I heard). Could you repeat what I missed? (This way folks aren’t having to repeat EVERYTHING).

D. It’s so noisy in here that I am having trouble pulling your voice from “all this chaos”. Can we step over there (points) to a quieter spot? I really want to hear what you are saying.

E. Do you mind if we sit down? My balance is “off” today and if we sit it will give me one less thing I have to deal with!

F. Let’s step over here to talk so that I can put Chloe in a “safe place” so she won’t get stepped on.

There are many more… but it pays to rehearse and have specific examples to communicate to others your attempt at being proactive to help yourself. I have never… not even one time… had someone respond to these types of explanations in a negative way. Preparing explanations like this keep me from slipping and offending someone by spouting off:

A. Geesh, your accent is killing me! I can’t hardly understand what you are saying!

B. Would you quit mumbling and speak slower please? Gee whilackers!

C. HUH?

D. WHAT DID YOU SAY? (In a super loud voice trying to drown out all the noise. Now ever eye is on you and the person who was trying to talk to you).

E. (Denise is bumped and falls to the floor in a tangle of arms and legs… including doggie legs).

F. STOP STEPPING ON MY DOG!

Preparation = Ownership

In preparing and planning, a person with an acquired disability or chronic illness in essence choose to take ownership of their own life. It isn’t another person’s responsibility. It is ours. What ways do you prepare and “own” your life to better live with a disability or chronic illness?

Denise Portis

© 2010 Personal Hearing Loss Journal


Not-So-Fun Life Lessons on Vacation

Published on by hearingelmo6 Comments
A little morphine will put a smile on the face of most anyone!

Kyersten is a frequent guest writer at Hearing Elmo. She is a KODA and has participated in HLAA, Walk4Hearing, and Fidos For Freedom activities most of her life. She is a junior in college and is majoring in Psychology.

Okay, I’m really, really stubborn

Being someone who hates doctors and hospitals, I pretended nothing was wrong for almost a week. After all, if you pretend it isn’t there, it doesn’t exist right? Besides, you’re not supposed to get sick on vacation, that’s no fun.

But pretty soon I knew that I had, I decided, the stomach flu. So I went to the urgent care in my grandparent’s town. Or rather, one of them, because being a city of retired folk, they have about a million urgent cares.

After running a urine test and blood test (blech), the doctor discovered my white blood cell count was dangerously high. SOME stomach flu. They decided to give me an IV. Or, at least they suggested it…at first.

“No thanks, I don’t want an IV,” I smiled.

“Well, we need to give these medications, and it’s best through the IV,” explained a nurse.

“No, I’ll just take a pill,” I replied, smiling but firm.

“No, we’re going to have to put an IV in there,” said the nurse, smiling but firm.

“No I really don’t want it, just give me some pills, I’ll go pick them up at the pharmacy,” I said, slightly more desperate. The nurse pursed his lips. He was cute and a fireman…but married with twins, so a total loss there. He was just the enemy who wanted to stick the needle in me.

“Okay, well, you have to go get my grandma first. NOW.” I said. (All of my 20-year-old independence was out the window when it came to a needle!) I needed grandma, and I needed her NOW.

Thankfully my practical grandma calmed me somewhat and they were able to give me an IV, into which they slid medications and fluids into my body. Ooooo morphine. The world looked more amusing and less painful. But the morphine didn’t keep me from panicking somewhat when they decided to send me for a CT scan at a local imaging place. SOME stomach flu this was!

Deciding that perhaps I was wrong about the whole stomach flu thing…

After drinking 2 large bottles of nasty poisoned Gatorade (they claimed it was because of the dye mixed into the Gatorade), I was led to a back room.

The technician looked about my age. I was slightly suspicious how much experience he had. He led me to a room to change into some unflattering and itchy clothing. After waiting for a bit, I was led to the Machine.

“Now, this machine is going to take pictures of your insides,” he explained. I wondered how old he thought I was….I was getting a lot of “you look 16” comments recently.

“Oooh, can I put them on Facebook?” I asked, trying to lighten the mood.

“I supposed you can request a CD of the electronic versions of the pictures,” he replied seriously. Okay-y-y. (No sense of humor!)

The CT scan was boring and the technician bossy.

“Breathe in…hold your breath. Breathe out. Breathe in. Hold your breath. Breathe out”. Over…and over….and over….and over. I wondered if this really was taking pictures of my insides or was trying to calm me down from the harrowing IV experience (which, if I may say, was still in my arm. I was pretending it wasn’t there though).

I was sent to the waiting room. They called the fireman nurse and doctor. Pretty soon they called me up front. The fireman nurse was on the phone.

“You’re going to have to go to the hospital immediately. I was able to get a bed for you,” he said. He explained the process of getting there.

I nodded obediently as if he could see me, my rebellion rather withered. I assumed at this point it probably wasn’t stomach flu.

“Okay, I’m going to go get some stuff first,” I said politely.

“No…you need to go NOW,” Well okay then.

Well, this is all very…new…and…well, uncomfortable

So I went. I called my parents, who I had been keeping updated. I texted my brother to tell him I loved him. And I mentally prepared myself for surgery.

And then I waited.

And waited.

And waited.

They decided they needed to do more tests.

The first test they decided to do they quickly concluded they could not do because I am a virgin. They were very peeved. I almost apologized even.

“I’m really sorry I’m not like so many other young people nowadays and haven’t lost my virginity several times over by now!” On second thought, no, I was proud of the fact I was a virgin.

So instead they did an ultrasound. Wait just a minute, didn’t they just establish I was a virgin? So why exactly are they doing an ultrasound? But no, there are apparently other reasons to do an ultrasound. Grandma was completely fascinated. I was just uncomfortable.

Late that night Mom and Chloe arrived, both were tired but very happy to see me. My grandparents went home and I was knocked out by some sleep medication while Mom kept watch by my bedside in the hospital.

I was comforted by her presence and she said I kept reaching out towards her in the night, to reassure myself she was there. You’ll always need your mom.

Tests, tests, and more tests…and I never even got a grade

Kyersten needed a "Chloe hug" once the morphine kicked in...

The next day was filled with more tests, including an MRI. The MRI was probably the highlight of my hospital stay… if there could be a highlight. The MRI technician looked like a mad scientist and he was absolutely hilarious. The MRI itself was kind of cozy, and he actually had to wake me up once. I felt rested after the scans.

After all the tests, including so many blood tests that I lost count, it was time for them to consider what to do, because they were really not sure what was wrong with me. They did another blood test to once again confirm that I wasn’t pregnant (as though the two ultrasounds, the urine test, the blood tests, and oh yeah…the fact I am a VIRGIN, wasn’t enough to confirm!)

Wednesday was the day. I wasn’t scared of the surgery, I was in too much agonizing pain to care. I had never before felt such pain and I hope I never do again. A terrible migraine hit me on top of my stomach pains. Then, my IV decided to try to burst my veins; thankfully, the skilled nurses got it out in time. Unfortunately they had trouble finding a new vein and dug around in my left hand for awhile before moving to my right arm.

A story of being in a whole buncha pain…oh and experiencing being “high”

That time was the worst part of the hospital stay, all I could do was lie on the bed and sob, feeling like a complete baby and wanting so so so badly to be home. My amazing Grandma and Mom were there, answering tears in their eyes. At one point Mom left to talk to a nurse and my Grandma prayed for me…which I needed to hear because all I could pray was “please God please please, please God”.

The nurse, in desperation, gave me a new medication which made me very….well….high.

“I think my words are messed up,” I gasped. I stumbled, shaking as if I was having a seizure to the bathroom and back to the bed.

“I can’t talk, my words are gone,” I moaned in confusion. Mom and Grandma were whispering, used to trying to keep quiet because of the migraine.

“Please don’t whisper….your lips smack together more,” I complained. My poor long-suffering family!

They finally wheeled me down to be prepped for surgery and I did feel a bit nervous. The pain, however,  was over-riding everything else again. The weird pain medicine had worn off. A nurse’s humming drove me insane, as did the loud talking of the nurses around. I really wanted to be in a quiet hole somewhere. Mom asked the nurses to quiet down (bless her wonderful, protective heart), and most of them did, except the loud humming one.

She gave me papers to sign. I apologized for my clumsiness, saying I was not left-handed (the IV and various wires were on my right arm). She snapped at me to use the other arm then. I meekly admitted I needed to use the bathroom.

She ripped the different cords off me (I had spent some moments trying to see if I could change my heart rate, before the headache returned…it was fun!) and took me to the bathroom, hooking my IV on the door, and leaving me. I was terrified someone would open the door and pull the IV out, so I hurried. Barely able to even lower myself to toilet by myself, I half-crawled to the door and yelled for help. I was definitely learning humility! Another, kinder, nurse came and helped me.

Going under the knife…and having little cameras looking inside my body….weird

Then it was a blur, I was wheeled to the room, and after prepping me a little more, I waited for the countdown.

And woke up in recovery.

“I have to pee,” I cried. I was assured I didn’t need to. I sat there whimpering for a few minutes about not being able to see (my eyesight was blurry) before I gained control of myself and calmed down. I felt kind of silly when I realized how much I had been crying. Now I was just confused. I squinted around me. I had no idea what happened in the surgery. The hospital doctor came by and seemed truly pleased to see me. He explained that my appendix had ruptured, they removed it, and cleaned up the infection. Ewwww. Eventually I was wheeled up to my room, I was happy to see my nurses and family, in a very drugged-out foggy way.

The time where I felt like Frankenstein

After another couple of days of recovery, which all seemed like a blur, a surgeon came in to look at my wounds. I watched them uncovered the bandages.

“Oh it looks so good!” he said. I almost screamed…or passed out, I was still deciding which to do before he left. Nine terrible looking staples were stuck in my stomach. I decided I was having a nightmare.

“What is that?”, I whimpered. My mom comforted me and explained the fact I had staples, not stitches. I felt absolutely horrified. I decided to pretend they weren’t there. (I was getting good at denial. It can be psychologically healthy sometimes).

The drug-induced blurred ending of the story…they put me on a lot of medications

The next few days consisted of different milestones. Leaving the hospital… sleeping a lot at my grandparent’s home… going to the airport… setting off the metal detector with my staples… flying home… being pushed through the airport by a speed demon wheelchair “pusher”… and finally arriving home alive. (All of course in a drug-induced stupor).

What I Learned…oh the joy of life lessons

Yes, it wasn’t the best vacation but my pain and suffering eventually stopped. There was a fix. It eventually slowed and I became stronger and felt better each day. In spite of the trauma of events, it was just a “blip” in my life.

I was forced to think about my friends and family who do NOT have a “fix” for their physical problems. I thought of how the doctors at first were skeptical that something was terribly wrong. During the exploratory surgery, I finally had proof something was wrong. (Even though my appendix wasn’t where it was suppose to be… I knew I was special).

I have friends with Lyme disease who do not have “proof” of their illness and are treated with skepticism. I can now understand … in a small way… what they go through and not having a doctor listen to you. It made me appreciate those emotional trials they go through in addition to their physical ones.

I thought about my friends and family with disabilities and illnesses that have no cure. At the times I was tempted to feel sorry for myself (and yeah! I may have given in and had a pity party or two), I thought of the fact that there was a light at the end of the tunnel for ME. It made me appreciate the bravery of those who live each day with no “light at the end of the tunnel”. They still live life to the fullest. I know they have times of weakness and maybe a pity party or two. But they live each day with the strength and bravery that I can never imagine having myself. Pain and helplessness (doing simple tasks like using the restroom), makes common life tasks more challenging. I never fully appreciated what those with chronic illness and disabilities go through each and every day. It helped me go through my small trial of physical pain and helplessness…I thought of these people and felt motivated to keep at it, to be strong. I am awed by their strength. From this experience… I now have new heroes. Those who overcome physical challenges every day.

Kyersten Diane Portis

20-year-old Guest Writer to Hearing Elmo

© 2010 Personal Hearing Loss Journal


For Our Own Good

Published on by hearingelmo7 Comments
A dog with a cone that is not FREAKING OUT

Chloe was injured on May 9th and it has been a LONG road to recovery. She had surgery following the accident to save a toe, lost 4 toenails… and it has been “3 steps forward and 2 steps back” ever since! Our biggest problem was getting her to leave the surgical site alone. Chloe is very smart. Chloe has been trained by the best. Chloe attends Fidos For Freedom for follow-up training and polishing. But Chloe? Well… she’s still a DOG. We were given a very nice cone similar to the one in the picture above. The only problem was that Chloe would go BERSERK when I put it on her. During the day, I could simply keep an eye on her while I was working at my desk. However, at night I needed a little assistance. The CONE was suppose to be my assistance. Every time we put the “cone of shame” (a line from the animated movie UP!), she went crazy… running into walls, dashing her head around, and inevitably breaking open the cauterizations and stitches on her foot. We ended up having to use “Bitter Apple” instead.

This saved my life actually! I wasn’t getting a “wink” of sleep and was seriously near a nervous breakdown from fatigue. One of my daughter’s friends at work recommended “Bitter Apple”, and it only took a few sprays for Chloe to LEAVE her FOOT ALONE! All night! (Thank you GOD… quite literally!).

I think part of the cone’s drawback was that it wasn’t transparent. Chloe couldn’t see to the right or left… all she could see was what was directly in front of her. It made her panic – the NOT knowing what was around and about. She could hear our voices, but her world had suddenly become very small. It was only as big as what she could see out the end of the cone.

You can’t very well explain to a DOG why they need a cone on their head. If you could explain that… well GEE! You could probably reason with them about why they should leave a surgical site alone! We could not explain to Chloe that the cone was for her own good.

For OUR Own Good

Isn’t that just like us? How often do we fight against what is only there to protect us? Some things that come to mind:

1. The speed limit. It’s not there to challenge you to see if you’ll get caught speeding. It’s there to protect you and others.

2. Exercise and eating right. How many thousands of Americans re-commit each January to make this change? It’s not because getting sweaty, pumping “iron” and eating fruits and vegetables are a lot of FUN. But we’ll live longer… and probably feel better too.

3. The 10 Commandments. Yeah, I know… it’s OLD TESTAMENT. But aren’t these things we should all continue to strive for even as “New Testament” believers? If you are a person of faith it normally means there is something different about you. If you covet, steal, murder, and hate, it is YOU who is scarred and broken in the end. Those “commandments” are for your good.

4. Taking medicine. Blech. But if you are sick, do you not take medicine when it may be what stands between you and good health… or life?

All 3 dogs were very concerned about my donning the "Cone of Shame"

I tried on the “Cone of Shame”. (Does that make me “game” or nutty?) The dogs were very concerned as you can see. All 3 sat in front of me and Chloe whined and breathed hard in my face every time I turned her way. It was very disconcerting to not be able to see around.

I believe that a “cone” is a good representation of how difficult it is to put your faith and trust in something or Someone that you can’t see. I have never seen God, yet He’s as real to me as anything I have ever experienced. I see Him in His creation. I see Him in the service and love of others. I see Him in answered prayer… even when He says “no”. Yet, I’ll admit to a major frustration in my faith walk. It is really hard not knowing what tomorrow may bring.

It can be very disconcerting to have a disability that may be progressive. It can be frightening to have an invisible disease like fibromyalgia, Meniere’s disease, or hearing loss. Have you ever been told “you’ll only get worse”? That knowledge can make it really difficult to have dreams and hope to see beyond “today”. We have to trust that what we have access too is enough for now. We should reach out to others and form strong relationships. We should research, prepare and educate ourselves. We don’t have to run around in a panic with this “cone” we didn’t ask for! Can you calmly and in faith, believe the “cone” is for your own good?

I have a “short-term” goal and a “long-term goal”. I strive hard to make every minute in pursuing both worthwhile. I know God has a plan for me that is not fulfilled as of yet. I know this because I am still here. It can be very frustrating sitting around with a “cone on my head and heart” — not able to see the big picture that God has access to  — since He PAINTED IT. I know keeping my eye on the short-term goals are important. It’s good for me. It keeps me focused, on track, and “real”. Yet I really want to be able to see 360°. I realize GOD can see the big picture… that’s what “omniscient” means… all knowing. I have to have FAITH that what I’m allowed to see and make sense of RIGHT NOW is enough. Having that “cone” on is for my own good.

It may not be very comfortable, but we have to believe that God has our best in mind.

Proverbs 3:5-6

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.

At some point… I’m going to see beyond the cone.

Denise Portis

© 2010 Personal Hearing Loss Journal