Meniere’s Rant

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

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Fallow Ground

I have really enjoyed FaceBook and reconnecting with old friends and family. However, FaceBook gets a lot of “flack”. My husband wrote a terrific, short post on his blog about this very topic and you can view it by clicking here. FaceBook has become much more than a way to “re-connect”. Because it is so simple to use, I use it connect to people I care about every single day. One can quickly see what people in your life are up to and honestly? It makes it easy to write a quick word of encouragement.

It also has some games. I’m not a big game person, but FarmVille is a popular one. I’ve become a little complacent about my own “farm”, but it is still fun to check in each day. I allow much of my farmland to be “fallow”. My busier, more industrious farming neighbors will “drop by” from time to time to take care of my fallow ground and plow it for me. If I’m really lazy and don’t plant anything, they will also fertilize the newly tilled ground.

I get tickled at the fact I don’t have to do a whole lot of work to my farm some weeks. At times, I wish that fallow ground would stay that way because it saves work for me later. (Like I said, I’ve become a lazy farmer). I grew up on the farm. Fallow ground is an important part of farming. Sections of farmland are intentionally left unplowed and unseeded during a regular growing season. Even though it is undeveloped, it is potentially useful to the farmer because it allows the ground to “recover”. The stubble left over from the previous harvest will break down and leave valuable nutrients in the ground. Because of my own sections of fallow ground on FarmVille, I have been thinking quite a bit about the concept of fallow ground.

Fallow Ground Symbolism

The Bible mentions fallow ground in Hosea 10:12 and Jeremiah 4:3. In both places it talks about breaking up the fallow ground as a word picture of cultivating your heart and life so that you can serve and minister to others. It lends the idea that a heart or life can be “hard” and unusable.

For a farmer, however, fallow ground IS useful. I am a big supporter of taking time off and having a designated time of reflection. Perhaps it is because I recognize that we are all way to BUSY. I have been emailing a lady in her 30’s who is a referral from Johns Hopkins Listening Center (their cochlear implant clinic). I’ve agreed to be a mentor and contact for people who are considering cochlear implants. (I’ve asked her permission to share this). It is difficult to be blind-sided by an acquired disability. Sometimes, the change can be sudden, extreme and permanent. Sudden sensorineural hearing loss (SSHL) had robbed this lady of her ability to hear well. She is feeling overwhelmed and at the breaking point. Her life has been in over-drive for some time, and SSHL made her feel like someone had “jerked the carpet out from under her and she lay dazed staring at the ceiling” (her words).

I said, “What you need is to allow some fallow time in your life. You are so busy and yet trying to cope with a major life-altering change. You are giving so much of yourself to so many others, you aren’t even able to weigh the pros and cons and investigate CI’s. I recommend taking time off. Allow your life to go fallow for a designated time. You need this time to re-group, think, and rest”.

She is now doing “just that”. She isn’t WASTING time. She is deliberately taking some time for herself so that she can work through her thoughts, feelings, and investigate cochlear implants.

“Fallow” is not Wasted

I think more people should determine to take time to reflect. I try to meditate and pray at least once a day. There are occasions where I take longer periods of time. But let’s face it… most of us are too busy to really have the time for reflection. What can we do about this?

This is an unpopular idea, but I firmly believe everyone should step back from “all their extra-curricular activities” from time to time. I believe elected (and volunteer) community service, non-profit, and support group positions should have specific limits on terms of service. It forces a change in leadership and allows over-worked, committed volunteers to rest (provided they don’t launch themselves into some new role).

Before insecticides and chemical fertilizers, more farmer’s left ground fallow to aid in replenishing the minerals that occur naturally from “resting the ground”. Today, leaving ground fallow may cut potential yield and profit. I believe that too many of us believe the same in our lives. If we do not keep volunteering for everything, who will do the work?

I had a real test of this in 2010. I have been told by folks I respect that, “If you step down from a leadership role, the vacancy allows God to fill it with someone He has already prepared for that position”. In 2010 I would be beginning the last year of school, and just simply could not lead my local chapter of the Hearing Loss Association of America. Numerous personal reasons and simply feeling BURNED OUT had me dreading yet another year of having to step up in a leadership role. The young mother who had taken the “reins” for 2009 had done an excellent job. I made the mistake of simply “moving” my available volunteer hours to another position of leadership within the chapter. As 2009 came to a close, this busy young mother wisely chose not to run another term. I was getting some pressure to step back up to “the plate”. Because I knew what this last year would entail for me I had to really think about it. Because I was already weary, burned out, and overwhelmed, I decided to put a “year sabbatical” to a vote for the chapter members. Incredulous that I was not going to step up and fill the vacant role, they unanimously but grudgingly agreed to a “year off”. I could tell that many were worried! We have elections in October and November each year. I actually had high hopes that God would press on someone ELSE’S heart the desire to step forward so that our chapter would not really have to close for a whole year.

I waited.

No volunteers stepped forward.

I “stuck to my guns” and we entered 2010 only meeting virtually. You know what? We didn’t “fold”, nor close our doors. As a matter of fact, numerous people once in leadership roles really needed this year off for various reasons. Elections are already underway for 2011, and we have a wonderful lady who is now able to devote her time and resources to leading our chapter in 2011. She wasn’t available last year. She needed this year off too!

I felt a little bit of pressure from well-meaning “others” to step back into the role of newsletter editor for 2011. I chose not to do so, simply because I know what my 2011 is gonna “look like” (to some degree… like many of you it is the part I DON’T know that causes significant stress – grin!). I need a “fallow” year. I’ll be finishing up school soon and will be starting to put an effort into finding that career… that position that helps shape a “better me”. Really this last year my free time was taken up with doing school! Next year? I need my life to become “fallow” in terms of allowing a rest and reprieve from even worthwhile activities and groups of which I am passionate about. I’ll still be an HLAA active member and participant, but my free time I need to be “me time”. I feel undernourished. I refuse to feel guilty.

How about you? Do you feel guilty when you aren’t OVER-involved in important, mission-minded organizations? Do you feel like you have to say “yes” to everything? Do you yearn for a bit of quiet and time to rest your soul, mind, and body?

I came across a poem written by a lady I know from FaceBook. (Like I explained earlier FaceBook is far more than reconnecting with high school classmates). She wrote a beautiful poem that I really felt “fit” the idea of needed and necessary “fallow” time in life. She agreed to let me share it here at Hearing Elmo.

Ocean’s Healing Grace
by Nancy Wilder

a lone figure sits easily on the sand
bare feet playing tag with icy foam;
so small in this vast ocean panorama
she gazes out over the horizon hues.

heart heavy and a mind in turmoil
sand and surf her refuge of choice;
breathing in the strength of nature
an open invitation for healing balm.

dawn has come and turned to morn
gray sky meets water in chilly repose;
pretty escape is not what she requires
peace provides nourishment to heart.

slowly the small figure begins to ease
battered mind gently clears in relief;
absently tiny fingers draw in the sand
as gulls dive for their morning repast.

the ocean’s healing grace envelops
urging an embattled soul to find joy;
life’s small blessings are apt minion
to supply happiness on daily course.

acceptance calls a smile to gentle lips
as she stands, the sun kisses the sky;
twirling gaily she casts away sadness
her heart and mind embrace a new day.

If you are feeling overwhelmed and near burn-out, I challenge you to allow yourself to become “fallow”. Don’t falsely bully yourself into believing this time is wasted. Go find an ocean…

Denise Portis

© 2010 Personal Hearing Loss Journal

Is INVISIBLE good?

Chloe and Denise at 2010 Fall Family Weekend

A person that I know with invisible challenges (Fibromyalgia, IBS, and Chronic Fatigue) said to me recently, “Denise… you have mostly positive advocacy experiences because you make your invisible disability – visible. That isn’t always possible for other people with invisible problems!”

I thought about that statement for a week. Then I thought about it for another week. I actually thought about it for a third week, which for me? It’s nearly impossible for me to “simply think” on an issue without going ahead and blogging about it! I decided to do a “test”. I would dampen the visibility of my disability and see if I had any problems as a result. If you don’t want an invisible disability to ever become apparent – don’t get an assistance dog. Nothing shouts, “THERE’S SOMETHING DIFFERENT ABOUT YOU” more than having an assistance dog with you. Let’s face it… it’s not the norm to see a dog in a public place. Having a canine partner is not for the faint of heart, for you will have questions, be stopped constantly by admirers, skeptics and the occasional unattended child. Because of my balance problems, having an assistance dog has yielded far more benefits than any negatives. I wasn’t about to leave my assistance dog at home for the sake of a “test” so I had to think of other ways. Thankfully, those who know me well are so accustomed to seeing Chloe with me, she is almost invisible as well.

I have always worn my hair up since acquiring hearing loss. I made the decision early on to make sure my hearing aids could be seen. The decision came as the result of being knocked out of the way in a Sam’s warehouse in 2000. Someone had been trying to get by and I continued to look at the shelves since I couldn’t hear the “excuse me” in such a cavernous place. I think the woman who knocked me down was equally as startled as I, for she certainly had no intent of sending me to the floor. She said, “Why didn’t you move?”

I replied, “I’m deaf”, and watched the color drain out of her face. She helped me up and hurried away. That week I began to wear my hair up AND I opted to purchase brightly colored earmolds for my hearing aids. In 2005, I was implanted with the cochlear implant. It was very natural for me to continue to wear my hair up and to add the CI “bling”. Making an invisible disability – not – has helped me. The only time I’ve had a problem with my CI being so visible is when I would on very rare occasions run into a defensive, belligerent, culturally Deaf person who was vehemently against the technology.

So for my “test” I thought I’d wear my hair down and not have any visible assistive listening devices. I chose to do it on a “long” work day. Shortly after arriving at school I ran into one of my student’s parents. I couldn’t discern any difference in the way we interacted and communicated. I went to the office and made copies for my classes, and checked my folder for any notes from the administrator. My first class seemed to go OK. During discussion time, it can get pretty noisy. It seemed to me students addressed their desk instead of looking up when speaking, but I was very aware I could just be guessing at that. Another student helped me pull the overhead projector screen down and I could tell he was responding to a question with his back to me as he reached to pull it down. Again, I was very aware this was probably just my imagination and… after all what proof did I have that this doesn’t happen on a normal school day?

I was well into the afternoon classes and began to think that this was a poor test since all of my students know I have a hearing loss. I was already “plotting” to venture into a store or restaurant with my hair down for a more accurate test. That may actually BE a better way to test my theory, however I was surprised by a late afternoon comment.

After a requested “repeat”, a student said, “Oh sorry! I forget you have a hearing loss when your hair is down!”

Yes. I realize that my students interact with me quite a bit and are more likely to notice a change in my hair. This meant I needed a new test.

I went to Costco this weekend with my son. He’s 6’3″ and strong enough to assist with all those items we buy in BULK to save money. I deliberately wore my hair down. I hate going to Costco on a Saturday because it is always so much busier. However, I figured for this test… that would be a good thing. I pointed out items and my easy-going, “glad to be of help” son would load them up on the big cart. I had several people stop to admire Chloe and ask questions about her. It seemed pretty standard until my son pointed out…

“You know they only ask how long you’ve been training her because they can’t tell you have a hearing loss, right?”

Ta da! This was the proof I needed, right? Who knows. I did know that my friend with invisible challenges was right about one thing. I do try to make my disability visible and usually it is to my benefit.

I enjoy answering questions about my CI and my assistance dog. People ask great questions for the most part, and most are curious because they know someone who has hearing loss or someone that could use the assistance of a canine partner.

Should everyone with an invisible disability make it visible?

No.

Cochlear implant manufacturers produce the CI’s in a variety of colors… usually HAIR colors. Individuals choose a processor and magnetic coil based on their hair color in order to eliminate the visibility. The idea is to help you keep it “your business” if that is what you desire.

I’ve heard from others with invisible challenges or disabilities who have said:

1. I don’t want anyone feeling sorry for me. If I want someone to know about it, I’ll tell them at an opportune moment.

2. I don’t want my co-workers treating me any differently. It would be terrible if they thought any advancements or promotions I got were the result of special privileges.

3. I don’t want to appear weak. I have bad days but do my best to camouflage them.

4. I don’t want to draw a bull’s eye on my disability, putting me at risk for crime or making me a target.

5. I want people to know who I AM, and not judge me or define me by my disability.

These are legitimate and persuasive arguments. If you have an invisible disability or challenge, it is YOUR CHOICE how open you want to be about it. My heart goes out to those struggling with depression or mental illness. These challenges can be very difficult to disclose. Sometimes invisible challenges carry with them a stigma that can wound and demoralize an individual. Never forget that we are people first. We are NOT our disability or challenge. I chose to look at it as my disability is simply a part of who I am now… a new me. As we mature and/or age (as the two do not always coexist), all of us change. We may choose to color our hair, or take care of wrinkles through the help of a trusted plastic surgeon. Maybe we wear glasses or contact lenses now. Many choose to do what they must to avoid the stigma of an invisible challenge. Those who choose to keep their challenges hidden have the right to do so. I do not judge them and trust my personal choice is treated with the same respect.

Care to comment on why you do or do NOT make your own invisible challenges or disability more visible?

Denise Portis

© 2010 Personal Hearing Loss Journal

Exercising My Right to VOTE

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