With Meniere’s I have fluctuation hearing loss, with eventual permanent hearing loss.
If you are a regular reader you know my situation, if not I’ll fill you in.
Right now, my left ear has 0% word recognition and cannot be helped with a hearing aid, my right aid has about 80% word recognition with the help of a hearing aid. However, the hearing fluctuates. My hearing fluctuates more with weather changes, and when I have a Meniere’s attack. (to learn more about Meniere’s please see the page above).
One day a few weeks ago I woke up and could barely hear. Every sound sounded like it was coming through a busted speaker. The same went on for 3 days. I admit this had me concerned. When I lost the hearing in my left ear, the majority was lost in just 3 short months. The loss started in this fashion. Sounding like a busted speaker, having a tinny sound. Normally, in my right ear when the hearing fluctuated, it simply dropped, then would return, sometimes not quite all the way, but when it dropped, it was just a bit softer, not this tinny sound. So I was nervous. And I realize, this could still be a sign of potential nerve damage.
However, in about 3 or 4 days, I had a vertigo attack. Classic sign of a Meniere’s attack. Fluctuating hearing, then a vertigo attack, ending in complete exhaustion. When I woke the next day. I could hear again! I was so thrilled. I had a horrible headache, but I could hear. Who knows how long this hearing may last. I decided to do something I rarely do, I took much medication to get my headache under control, and went outside hoping to hear some birds. Sadly I didn’t hear any birds. I was not the right time of the day. But being outside was so nice. I decided to sit on the back porch and enjoy the beautiful spring late afternoon. Soon I was joined by a friend.
A huge bumble bee decided I would make a good friend. I was out on the back porch for at leash half an hour possibly more, this lovely bumble bee kept me company the entire time. He would come closer, then go a little bit away. He faced me, then raced away and buzzed right back. I talked to him and told him how beautiful he was and how I was out there hoping to hear things I may not hear much longer. As if he could hear me, he came up right beside my head, I could not only HEAR this beautiful Bumble Bee BUZZ, I felt it!! He then came around in front of me and looked at me. I know, this was just by chance, and perhaps because I had on a bright orange shirt. However, no matter how long I live, and no matter if I lose all of my hearing, I will never forget the day I heard a bee buzz.
I started writing about my health because I wanted to log how my health was improving. It was after a couple of surgeries, and I was ready to start exercising, eating better, and making some grand changes in my life, but I still wanted to keep up with my symptoms and start talking to others who had some of the conditions I did to find out how they dealt with them. I knew not all of my conditions were going away, I just didn’t understand how much they could take over your life. (for a list of my conditions, please see the page above, titled “My Ants”)
Soon my health started getting worse, and my writing became more important to me. Reaching out to others became more important. Finding out all I could about my illnesses was very important, I had to know what was going on, and I needed to share what I found with others. I felt alone, and I needed to make sure others didn’t have to feel the same. If they could find me, then they didn’t have to feel alone any more….a grand idea I know, not everyone will click with me, but they may read something here and think…”Yes, I feel that too.” I soon found out way too many people did feel the same. One of the ways we no longer feel alone is through our blogs, and our online communities.
Now there are many reasons I write about my health -
- to get to know others who are in the same or similar situation I’m in.
- to get more information out there about my illnesses
- to let people know they aren’t alone, and so I won’t feel so alone
- to promote more knowledge about my conditions, especially Meniere’s and Intracranial Hypertension (most people don’t know much about those.)
- to put a face on invisible illnesses
- to make it easier for people to talk about having a chronic illness
- to learn ways manage my illnesses easier. (for instance, using aids for assistance, like my walker or hearing aids….)
- because I love myself, and writing makes it easier for me to accept my illness, and to constantly adapt to new expectations.
- and one huge reason I write about my illness – so I won’t drive my husband crazy constantly telling him every little detail over and over and over!
If you had a super power what would it be?
Hummm, that’s kind of a no brainer. I’m chronically ill, I know a lot of people who are chronically ill….I think I’d have to say a healer.
So I decided to take this a bit further. I’m a bit of a cartoon buff. Of course, when I started thinking about super powers I started thinking about cartoon characters. My husband and I started talking about it, and I told him I thought I’d like to be Katara, from The Last Air Bender (please note, I am only referencing the animated series, I have not seen the movie.). I’m also an environmentalist, and believe the earth has to be in harmony.
This animated series brings all of this together. The world is divided into 4 nations representing the 4 elements, Earth, Air, Water, and Fire. I’m not going to go into the plot of the show, just explain the power I’d like to have. There are some people from each nation with “bending” skills. It combines martial art skills with controlling specific elements. Each nation’s bending ability would have it’s own martial arts style, and ability.
Katara is from a Water tribe. She can bend water. It is a beautiful thing to see. The flow of her body as the water follows her movements, she can make it whip, and encase someone, and freeze you in place, and she can use it to heal.
Katara is strong and has a pure heart she fights for what she believes is right no matter what the cost. She gets so angry sometimes, but it’s because she feels so deeply. When the show first started she had a lot of growing to do, but by the end, she had grown into a fine young woman, and an exceptional water bender. She can take the water and mix it with the water in your body and heal you, it may take some time, but it can often be done. I would be proud to be like Katara. (but I wouldn’t want to live at the South Pole, good thing she travels a lot.)
The video below is a tribute to Katara, it’s set to music so if you don’t have sound, don’t worry you aren’t missing dialogue. You will see how passionate she is, the amazing fighting skills, and notice when she takes the drops of water out of the vial around her neck and places it on the boy’s back, she is healing him after he was nearly killed in a battle. Amazing powers….actually, I think they are only slightly a gift, then they are a skill. If you do not have a good teacher, and practice, this gift will not turn out to be the power Katara has made of hers. Another reason I would like this type of power. I have learned that an ability you have fought to achieve is much more appreciated.
I hear many quotes that I get inspiration from. The one I’m continually inspired from is one I heard over and over again from my mother, “I Believe In You.” After she died, it was a long time before I heard those words again. Now, I’m so grateful to once again hear the same words over and over from my husband.
Those 4 words resonate through my very soul.
“I Believe In You”
Because of these words,
I was the first person in my family to graduate college.
I had the courage to seek help for a mental illness (Bipolar Disorder) that was tearing me apart.
I had the courage to become an artist and show my artwork in a gallery and have a one person show.
I have had the courage to face my chronic illnesses as they have been diagnosed, including Meniere’s disease a vestibular disorder with sudden vertigo and hearing loss, and most recently Intracranial Hypertension a disorder of the brain causing high cerebrospinal fluid. (please know these are very simple explanations of each of these disorders)
I have the courage to face each day as it comes, make the most of each good moment, and realize that at the end of my days I will look back and all these moments will have added up to be a pretty good life.
“I Believe In You.”
Everyone faces their own battles, we all need someone to believe in us.
Who do you believe in?
Have you told them?
Make sure to let them know.
When you are facing a hardship, fighting a battle in your life, it’s easy to give up when you don’t think anyone believes in you. When you have someone pulling for you, someone who believes in you, it’s much harder to give up. Courage comes from belief. Belief in yourself, for some belief in a higher being, but sometimes, we need a little help from someone else. We need to feel a human touch, someone who can reach out and say…”I Believe In You.”
My wish…Go out today, and tell someone special you believe in them!
The very first thought that came to my mind when I woke this morning after 4 hours and some odd minutes of sleep was, “I feel like a Rat in a Pink Inflatable Cage.”
The next thought I had was, “Where did that come from?” Then I realized, that is exactly how I feel.
I’m the clinical rat being tested on and pocked and prodded, trying to find the answers. I’m living with that, I accepted it, authorized it. I understand doctor’s don’t know everything, and not every person reacts to everything the same way. But why the Pink Inflatable Cage? That was a new sensation, well kind of, it does happen now and then. I had the feeling I was just kind of in a big bouncy house. Everywhere I moved things moved just a bit with me. But the vision it was so perfect. I had to share even if I can’t quite express it in the perfect words..
Now for why I had such a short amount of sleep. I was put on a dose of steroids yesterday to help knock out my migraines. I started them a bit too late in the day, so my last dose was a bit too late. I’ve taken steroids before, but I’ve never had the symptoms so many warn you of. The increased appetite, the restlessness, the bouncing off the walls!!! Well I did find out I don’t quite jump off the walls quite as much if I eat with the dose, but I have to eat a good amount. Whew! But I learned this a bit too late. I got to sleep around 6am, around 10am, I awoke to start the next days doses a bit earlier. I really need to make sure I finish my last dose a while before sleep time. So today I’ll be finished about 9pm. Yay! Hopefully, I’ll get a whole nights sleep. Oh, I did happen to get a 2 hour nap. So I had a little more sleep today.
*I wanted to remind everyone that I’m participating in The Health Activist Writer’s Month Challenge hosted by WEGO Health. Starting on April 1st. So my posts may seem a bit different. There will be some of my normal talk in there, but I’m going to follow some of their prompts to make it something different. I’ve already written some of the posts, and I think you will find some of them enjoyable! I’ve enjoyed some of them. A couple I did enjoy, but I know won’t be the style of many of my readers. I know you are thinking….”She’s already started?” Yes! I wanted to make sure if I had a day that I simply couldn’t post, there would be a post ready to go out. I also wanted to make sure if there was a day I felt good and wanted to and have a happy day, I didn’t want to be concerned that I might not get a post in. So yes, I’ve started. No I don’t have the whole month finished! But the first week is ready to go, and a few more are in the works. Aren’t you proud of me???
Remember you too can join me, if you are brave enough…or crazy enough, I’m not sure which. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around.
I hope you enjoy the month, if you don’t please let me know and I won’t participate again. If you want to hear more of my normal rants, let me know, remember these prompts are just suggestions, I can always post my normal way. This blog has always been a way for me to express my feelings and to help others along the way. I never want to stray from that purpose. Please let me know what you think. And keep in mind, this is just for a month, so let’s play if we can stand it, we might make some new friends, and we might learn a bit.
But I’m open- let me know what you think.
I’ll probably put up a poll at the end of the month to see what everyone thought. : )
I’m joining the challenge! Am I crazy? Well yes, we’ve already established that fact. I do have a verified mental illness, and now I have been diagnosed with a brain disorder so you, my friend, are absolutely right when you say, “She is insane if she thinks she can pull this off!”
May we take wagers? Who out there thinks I can do it? Who would dare to take that bet? hummmmm? Well, I will. I will take you on! WEGO gives you 2 days that you can miss. I vow to post no less than 28 days in April! I’ve already read the prompts, we don’t have to follow them, but some are really good…so you may be seeing a new side of writing from Wendy.
Now for you who want to wager against me……just remember all the things I’ve over come. And also think…It’s March 19th, and she’s already started writing next month’s posts. Maybe you should rethink that bet. *wink*
So here’s the official call to arms…or should I say to computers, laptops, ipads…oh what ever you use these days!
Hey everyone – I just wanted to tell you about a new activity I’ll be doing this April. The Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you’ll join me in writing every day about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around. Looking forward to writing with you!
You can really tell I didn’t write that huh?
I will be writing a lot more about this new diagnosis of course, and just what it’s like to live with a disability. If I think of it, and it I feel it needs to be said, you know it’s going to be regurgitated here. (lovely picture huh?)
If you are a health blogger, jump on in. Give it a try. Some of my days may just be a photo and a quote, but as long as it’s appropriate, that’s alright. We can do it, get the word out, we have chronic illnesses and don’t want to be invisible any more!!
I don’t know what happened with this post, I thought I posted it a couple of days ago.
I just realized it was never published!
A little anti-climatic after my last post…but just imagine you read this one first. : )
1 – WEGO Health Award Winners
Be sure to check out the WEGO Health Award Winners! You can find the winners with links on WEGO Health on Facebook or on the WEGO Health Blog Post. Keep watching these sites for more information about the 2012 Health Awards. This was WEGO Health’s first Health Activist Awards and they would like your input to help make them even better, you can take a quick poll here http://4159395.polldaddy.com/s/tell-us-what-you-thought-of-2011-health-activist-awards. I am thrilled that I was chosen as a finalist for the TMI Health Activist Award. There were many nominations for each category, I hope you took the time to nominate your favorite blogs. Everyone who is a Health Activist should be proud of what they accomplish. You make a difference!
2 – Monday, January 30th…a day at Duke.
On Monday I had 3 appointments at Duke Medical Center. 12:15 pm Clinic 1D have blood tests. Since this is a mini-post I will not go into detail about how odd the technician was, and how very painful the procedure was, needless to say, it wasn’t the best experience. (who takes blood from a person’s hand? Without even looking for a vein elsewhere? And fishes around under the skin for the vein?) Yes, not a goo experience.
1:30pm Lennox Baker Center (located about 2 or 3 miles from the clinics) for Brain MRI with Contrast. The first person we encountered there was very confusing to me. I kept getting confused as to what I was supposed to do next, I told him I couldn’t hear, but he just seemed to get frustrated with me…glad I had Stuart with me to help (but he got a bit confused too, so it wasn’t just the hearing issue). I got an IV for the contrast dye, I have a huge black bruise from this, but it didn’t hurt nearly as bad as the blood test I had earlier. The MRI itself was pretty easy, much easier now that I can’t hear the extremely loud noises that it makes. (I also took a Valium before going, so it was much less stressful!) When the technician took me back to Stuart, he just held the door to the waiting room and left. Stuart wasn’t there. I didn’t have my hearing aid. I asked the people in the waiting room if they had seen another man, and asked them just to shake their heads because I can’t hear. Everyone said NO…yes, I began to panic a little. I’ve never been put in that type of situation before. I couldn’t hear what anyone was saying, and I had no on there who knew me who could help me. I went back to where we checked in, and Stuart was in that waiting room. They told him that’s where they would bring me back to. It was only a bit of a panic for a moment, but once again I’m reminded of how much I must depend on my husband.
Lunch – 2:45 – 3:10 Chipotle – There was really only one faster type place we could stop on the way back to the clinics for my next appointment. We stopped at Chipotle. I used to love this place, and I thought I was being very cautious when I ordered. I had the grilled chicken tacos (no onions or gluten!) Then I got some guacamole…I love their guacamole. I didn’t realize until I’d eaten about 2 tablespoons of it that it has red onion in it. My stomach bloated to such an extreme my loose top was very tight around my tummy, I really looked like I was pregnant! I had the worst heart burn. I was not a happy girl…but lunch tasted really good!
3:30 Duke Clinics – Dr. Kaylie’s office – As expected, my MRI was clear. No brain tumor, a little fluid still around the surgery site, but that was to be expected, it will dissipate over time. The greatest adventure we had at his office was with the Blood Pressure machine. First they couldn’t get it to read my BP, then the BP cuff actually blew off! She fixed it up, and then she took my BP again…it was 175/113! They told me I couldn’t leave. The nurse started asking me questions, was I light headed, did I have a headache….I mentioned I had heart burn, she started to look worried and asked if I had pain in my jaw. I thought…oh great they think I’m having a heart attack! I explained I had heartburn because I’d just accidentally eaten onions. She decided to try a different machine, again, after numerous tries it wouldn’t take my BP. We decided to rest for a bit and try again. Third machine, finally read my BP 145/92 – yes still a bit high, but after what I’d just been through it was understandable, and Dr. Kaylie said I was OK to leave. Whew! I hope my blood pressure is normal next time I go to the doctor, I don’t want to go through that again.
3- New Glasses
After my appointments at Duke we went and picked up my new glasses. I was so excited, looking forward to seeing clearer, the frames that would fit better with my hearing aid, the lighter material, and the new look. I put them on and looked in the mirror and didn’t really like the look. I’ll get used to it. (I think most of it has to do with my face being so much rounder. I’m just not fond of that look!) In the office I thought I could see fine. On the ride home I realized I couldn’t read the street signs. Then yesterday while at class I realized I was having a very hard time going from distance seeing to seeing close up. Oh great! My optometrist and I discussed what I do and how I need to see. She told me that the glasses I have now are single vision lenses., not bifocals. So I decided to get two pair of glasses, one that is just single vision, and one that are called “computer progressives”. They will help my vision seeing the computer and reading up close. After examining the glasses I have now, I realized that they are in fact bifocals. I’m not sure I would have added the extra expense of the second pair if I’d know this. I’m usually very frugal about how much money I spend on glasses, but I was so unhappy with the last pair we decided to get the “perfect pair”. Now for the beginning of trying to get these glasses fixed. *sigh*
So there we go, 3 short versions of things I wanted to say….unfortunately, I still have much I want to post about. Receiving the Candle Lighter Award and passing it on…a link to a post about being positive featuring me, and my day yesterday….so much I want to share, you may get tired of hearing from me.
I’ve been chosen a finalist for the TMI (Too Much Information) Wego Health Blog Award. I was thrilled and humbled when I was nominated, I couldn’t have asked for more. Today I spent the entire day at Duke..running between clinics, and getting an MRI…today was long and often painful. When I got home I collapsed in a tub, and finally around 10pm checked my email, and found 2 friends congratulating me on being named a finalist. I was stunned. Speechless – yes, I know that’s hard to believe, don’t worry it didn’t last long. More than anything, I feel so honored.
I’ve been so busy the past few days I completely forgot they were going to be announcing the finalist, so this was a huge shock!
Please be sure to go to the WEGO Health Blog to find out all the finalist in each category! Including my friend Kelly Wahle with her blog Fly With Hope, is a finalist for the Health Activist Hero Award!! I’m so proud of you Kelly, for all you do! You are such an amazing woman!
The other finalist for the TMI award are:
Mo- Mommy Odyssey
Jacquie Wojcik – Bad Pancreas
Sara – A Girl With Guts
Jenni Schaeffer – Jenni’s Guts
Brynn Hultquist – Lupus Interrupted
Be sure to check out these awesome Health Advocates.
But, beware, we are finalist for the TMI (Too Much Information) Award. We “always goes there – no matter how personal or embarrassing the story.”
Why did I decide to tell it all, no matter how personal or embarrassing? I was going through a very rough time with one of my chronic illnesses (Meniere’s Disease), I searched and searched to find out more about it. I wanted to know if other’s were experiencing the same things I was. I couldn’t find the ugly details. People would mention having an attack, but no one ever gave any real details other than, having vertigo and vomiting for hours. I talked to a few people privately and found that many were having some of the same things I was experiencing happen to them, but they were uncomfortable talking about it.
I was sure there had to be other’s like me, who want to know all the nitty-gritty details, to know they are not alone with what they are going through. I then decided, I wanted to tell it all! I want people to feel they can talk about what goes on behind closed doors, when we are alone with our illnesses.
After a few posts detailing the dark and ugly side of my illnesses, I was praised by my readers for being so open and honest. When I wrote in detail about one of my vertigo attacks, I heard from many who were relieved to hear, they were not the only one who went through these things. One very special reader, who fights her own battles with chronic illnesses, told me that post was the most terrifying thing she’d ever read. I cried and cried after reading that. I felt validated. I was so relieved that people could understand, even people who do not suffer from Meniere’s Disease could read that post and “get it”.
I knew then, I needed to be a voice to this illness, and the other chronic issues I have. I wanted to break down the stigma of telling it like it is.
No matter what the outcome of this award….I can not be happier than I am right now. Being nominated by a reader, then after a very detailed process to pick the finalists…I am just so humbled to be in the same category as the bloggers mentioned above.
And I will continue to tell it all, the good, the bad, and the very ugly. I hope you will keep me company along the way.
I don’t know who sent my name in, but I am so humbled, and excited that I have been nominated for a Health Activist Award sponsored by Wego Health. To see the awards available, to nominate someone, or just find out more, please go to: http://info.wegohealth.com/awards-2011/. If you would like to be on the jury and help pick the winners go here: http://info.wegohealth.com/awards-jury/ Winners will be announced January 12th.
I was nominated or TMI Award (Too Much Information) Award - This Health Activist always goes there – no matter how personal or embarassing the story.
I was sent an email telling about my nomination, with a copy of what the nomination said, but it did not include who did the nominating.
I want to sincerely thank you from the bottom of my heart.
If I win our not, this nomination touched me so very deeply.
(BTW, to be shameless here, you can also vote to nominate me – or anyone you want – at http://info.wegohealth.com/awards-2011/)
I would love to win, but just being nominated *getting chocked up here* well, for someone who always lays it out there, no matter what, it’s hard for me to put into words just how much this effected me.
I just adore you, my dear, sweet readers. You have supported me and have become so very close to me, I am proud to call you friend.
I thought some of you might like to read the nomination that was sent in. (as you all know I’m pretty open and blunt…and so is this nomination….so beware if you are a new reader.)
Reason: I am nominating Wendy for this award because she shares every detail of her life no matter what it is. Currently she is going through recovery from surgery and described how her husband had to take care of her while using her bed pan-and as she is on her period! She also discussed how the hospital workers insist on giving you a PG test even if you have not been physically able to do the very thing that would make you pregnant. She made me laugh when she said her husband commented the silliness of this PG test prior to her surgery by saying “Well, if you are giving birth to the messiah we want to make sure we don’t cause him to have birth defects.” How many of us with chronic illness have been through that but never shared it. She did honestly and with humor. As seen in the comment section of her blog, people are moved by how in each blog she writes she is always herself and unguarded. Through her expression of how rough things can be, others can read her entries on depression or bipolar where she lays it out as it is. There is no film of protection on her writing. Wendy certainly deserves the TMI award.