Do you feel inspired?

inspire

We all see them, the chronically ill who are living amazing lives, even doing things above and beyond what most “normals” do.  They don’t let their illnesses stop them.  They thrive despite their illness.  These people are supposed to be an inspiration.  We are to be amazed and we’re supposed to look at them and realize, “Hey, if they can do it so can I.”  (does that really work?)

There always seems to be a celebrity who has the same disease you do.  As a spokesperson for our illness they are supposed to be an inspiration, after all, if they can do it, why can’t I?

Do they really inspire you?  Does it give you hope?  Or does it make you feel inadequate?  Does it make you feel bad because you haven’t been able to do what “normals” would define as remarkable things in spite of our illness.

For me, it’s often the later.  I feel inadequate because I simply cannot do the things I used to, let alone do extraordinary things that I’ve never even thought of doing.

It concerns me that people will compare me to those “inspiring” people and think that I’m exaggerating the severity of my symptoms.  I’ve had well-intentioned friends and family members send me articles about someone who has Meniere’s Disease and how they are are either living amazing lives despite Meniere’s, or they were “cured”.  This happened a lot when Dana White (president of the United Fighting Championship), underwent a treatment for his Meniere’s and it was a “miracle cure”.  What they don’t realize is that there is more than one cause of Meniere’s, so his treatment may do nothing for me; he has Meniere’s in one ear, I have it in both.  They also seem to ignore the fact that he had to go to Germany to have this procedure done….ummm, who’s going to pay for this?  Not my insurance that’s for sure.  and just how safe is it?  After they send these messages, I wonder, do they think I’m not doing everything I can?

When we hear that someone is an inspiration, it is supposed to be a positive thing, but inspiration can be negative.  You can inspire people to do bad things.  Look at Charles Manson or Adolf Hitler, for example, they inspired people to do all kinds of horrible things.  They were very inspirational, just not like we have been conditioned to think of the word.

The people who inspire me to try harder, to live more fully, to embrace life, and simply care more are the amazing people I meet who have chronic illnesses and can still love their life, with all it’s limitations.  I’m amazed by the people who undergo many painful medical procedures and still greet each day with love.  I’m positively inspired by those who are able to push through and do the everyday things, even when life is just so hard. The people who show compassion and support to others despite the fact that they get so little themselves, these are some of the people who inspire me to be the best me I can.

I’m not saying that famous people can’t be a positive inspiration, I’m simply saying that is not always the case.  When I see a list of famous people who suffer from vertigo, it doesn’t inspire me to do anything.  I feel compassion for them, and I often wonder exactly how much they battle with their illness behind the scenes.  What are we not seeing?  The phrase, “but you don’t look sick”, sure hits home when we see someone like the beautiful Selena Gomez, who has Lupus.

Then I hear things like, “Nicolas Cage suffers from vertigo all the time”.  Ummm, really?  All-the-time?  I could believe he has disequilibrium all the time, but full blown vertigo, no way.  I simply do not believe it.  If he has vertigo all the time and can function as well as he does, that would be a miracle.  I can believe that he may have recurring vertigo, but not constantly.  I’m pretty sure I’d kill myself if I had full blown vertigo all the time.

 

Who inspires you to be the best you can be?

Do you get positively inspired by famous people who have your illness?

Does it make you feel inadequate when you hear that someone who has the same illness that you have has done something like run marathons, or started a successful business, or has won the “Golden Buzzer” award on America’s Got Talent, like Mandy Harvey did, who is deaf?

Am I the only one who is rarely “inspired” by these stories?

 

*image is a screen shot from Dictionary.com

 

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Mindfulness Monday – Dizzy

dizzy winter

“Looking up gives light,
although at first it makes you dizzy.”

~ Rumi

 

“I am trying so hard to live in the moment and
enjoy it while it’s happening,
because it feels like a moving freight train that I just got on,
and I’m trying not to look back and get dizzy!

~ Laura Bell Bundy

 

“To be alive is to be dizzy
and not to know exactly where to go.”

~ Ander Monson

 

*image by W. Holcombe, please do not use without permission.

 

 

It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

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I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

Walk4Hearing

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How I hear. Bilateral cochlear implants. Cool Huh?

The Hearing Loss Association of America‘s Walk4Hearing in North Carolina is coming up soon on October 15th, and I’ll be walking. (fates willing)

Did you know that approximately 48 million people in the United States have a hearing loss? The goal of the Walk4Hearing is to increase awareness about the causes and consequences of hearing loss and to raise funds to provide information and support for people with hearing loss.

This is my first year participating in the Walk4Hearing and I’m excited and nervous. I’m excited to be surrounded by people who live with hearing loss, like me; our friends and family who support us, audiologists, and advocates…everyone coming together to make a difference. I’m nervous because ….well golly, this is one place I’m not nervous because I can’t hear. That’s pretty amazing. I will be using my walker for balance and safety. I am a little nervous that I might have a vertigo attack, but hubby will be with me, I’ll take all the precautions I can, and if it happens, I’ll deal with it.

I’m pushing myself by participating in this walk, it’s important to me. It’s hard for those with normal hearing to fully comprehend the challenges that one faces with hearing loss. It’s hard to imagine the disorientation that comes from the absence of sound, the concentration required to communicate using both visual and auditory clues, and how people and things can come up from behind you with no warning.

This year, the Walk4Hearing will include a #HearingLossChallenge. Walkers will have the opportunity to wear earplugs during the walk to experience what hearing loss is like first hand. The earplugs will be provided free at the walk sites. Even though, the experience isn’t completely accurate, it will give the wearer a taste of what it’s like to live with hearing loss. Photos and reactions can be shared on social media using the hashtags #HearingLossChallenge and #Walk4Hearing.

I am hoping you can support me in my efforts to raising awareness about hearing loss. Your tax-deductible gift will make a difference in the lives of many!

You can make an online donation from my personal page (click the personal page link here). Any amount, great or small, helps in the fight to make hearing loss an issue of national concern. I greatly appreciate your support and will keep you posted on my progress.

(please visit Sheri Eberts blog Living with Hearing Lossto read about her experience with the Walk4Hearing. I have shamefully used many of her words above, with much gratitude.)

The Hearing Loss Association of America® (HLAA), founded in 1979, opens the world of communication to people with hearing loss through information, education, support and advocacy. In addition to the Walk4Hearing, HLAA publishes the bimonthly Hearing Loss Magazine, holds annual conventions, hosts online learning with the Hearing Loss Support Specialist Training, and more. HLAA has chapters nationwide to support people with hearing loss. The national headquarters is located at 7910 Woodmont Avenue, Suite 1200, Bethesda, MD 20814. Phone: 301.657.2248.

Feeling Stuck

I’ve been trying to write for a long time, but the words just haven’t come.  There are a couple of topics I want to write about, but they are sensitive, and they may offend some people who read my blog.  It’s a true dilemma.  I want to be true to myself and my readers, but I don’t want to hurt anyone.  So I feel stuck.

My brain is also just not working like it used to, I’m thinking that having a moderate to severe headache for almost 2 years has something to do with that.  They’ve just been getting worse.  I had another visit to the migraine doctor and she changed up the Diamox; she had to, it was driving me crazy with all the side effects and I wasn’t going to take it anymore.  She put me on Methazolamide.  It’s in the same family as Diamox but it is supposed to be more easily tolerated.  So far I am tolerating it, but it is doing nothing for my headaches.  I feel like she doesn’t take me seriously since most of my migraines are moderate in intensity.  A moderate headache  (between a 4 and 6 on the 0 – 10 scale) every day can be pretty debilitating.  At least I do have a few hours here and there where my headache is mild, but it’s still there, all the time.  My brain is mush.

I started to order supplements that are supposed to help with migraines, but I’m seeing the functional medicine doctor next week, I’m sure they will suggest supplements.  So, it will wait until the 18th.  I’m excited about going to the Functional Medicine doctor.  I’ll write all about it after my visit.  I was supposed to go a while back but we thought we might be moving and didn’t want to get started with another doctor.  But it looks like we’ll be here for a while, so let’s get started.

I was reading on the American Migraine Foundation site and the University of Maryland site about supplements that help with migraines. (be sure to check out those sites for information on supplements for migraines)  I’ve already tried looking for triggers in foods and everything else I can think of.  The only things that really trigger a headache for me is the weather, and strong smells.  Sometimes bright lights can do it.  So I’m searching for alternative treatments.  I’ve tried acupuncture and chiropractic, they didn’t work for me.  I know that magnesium can help with migraines but I found it caused diarrhea.  My migraine doctor suggested a different type of magnesium that is easier to absorb, (magnesium glycinate or gluconate).  Who knew there were so many different types of magnesium, I counted 7 yesterday when I was researching it.  How is one supposed to know what you need?

I decided to wait on starting the new magnesium until I found out if this medicine she gave me worked.  (I already take magnesium, but it’s the kind that upsets your tummy so I don’t think I’m taking a therapeutic dose.)  She still says to give this new medication a month at the highest dose.  I hate to say it, but I’m ready to look for something else.  I just don’t think the medications is going to help, so far my headaches have been more severe.  I’ve been on the medication for about a month now, I’ve been on the highest dose for a week now.  It’s a very hard medicine for me to keep up with .  I have to take it 3 times a day.  It’s the only med that I need to take in the middle of the day and I can’t remember it.  (I haven’t missed a dose, I just don’t feel that I’ve timed it out well) I installed a timer on my phone, hopefully that will help, as long as my phone is close enough to hear.  Great thing about this medication, it has greatly reduced my appetite.  I’m losing weight again, finally, after so much trying.  I’m very excited about this.  Now if I can keep it off when I go off the medication.

The thought of adding more supplements or medications to my regime is overwhelming.  I take so many pills, surely I don’t need all of them.  But I’m not one to just go off of medications.  I will go over all of them with the Functional Medicine doctor and we will see what he has to say.

“Functional Medicine is the deepest and most powerful approach to prevention and reversal of disease that I have encountered. It systematically discovers and addresses the root causes of disease and uses sophisticated treatments that lead to dramatically improved outcomes”  ~ Robert Sheeler MD, Editor Emeritus, Mayo Clinic Heath Letter

If you are curious about where I’m going, then please check it out.  Optimal Health Medicine Center

Since I’m giving an update on me I may as well tell you about my vertigo.  I’ve been having a lot of short spurts of vertigo.  It may be migraine related instead of Meniere’s, but it is really hard to tell at this stage.  I’ve fallen twice in the past 2 weeks.  Luckily I remember to just crumple myself on the floor instead of falling hard.  Both times I went down on my artificial hip.  Luckily, I didn’t hurt myself at all.  Think I need to use my walker at home more often.

So, I’ve been rambling.  At least I’m writing, right?  Today I just had to get out what has been going on recently.  Perhaps soon I’ll write about the other things on my mind.  I really want to keep my blog open and honest and not writing about these things that are going on in my life, feels dishonest.  Perhaps I’ll write about easier things first.  maybe.

Thank you all for following me.  I’m glad you like Mindfulness Monday.  I’m going to try to get out more posts, I promise.

What would you do?  If you thought a topic might cause some upheaval, would you still write about it?  It isn’t anything that everyone in my family doesn’t know about, they just don’t believe it all.  Then the other topic is about medical marijuana….since it isn’t legal in my state, I’m not sure I should write about it.

 

Rare Disease Day, I have a rare disease.

Today is Rare Disease Day. “Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the United States is considered rare.” (rarediseaseday.us) There are more than 7000 rare diseases and disorders in the US. That comes to over 30 million people who have a rare disease. It’s not so rare huh?
Some of you may know that Ménière’s Disease is a Rare Disease, it is listed on the National Organization for Rare Diseases (NORD) registry.  The information they have listed about Ménière’s  Disease is interesting.  Please go check it out.  Even I learned a thing or two.  🙂

Benign paroxysmal position vertigo (BPPV) is also on the Rare Disease registry.  You can read more about it here.  I’m very impressed by the information available on NORD, if you have a rare disease, or want to know more about one, I urge you to look it up on the National Organization for Rare Diseases (NORD) site.

Having a rare disease normally means that there is little known about the disease, we go from doctor to doctor hoping to find out more.  Hoping to find help.  More research is needed for all rare diseases.  Contact your local representative to speak out for your disease and make sure more research is provided.  You can find out how to contact your representative here.

“NORD’s Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. This is not a comprehensive database since there are nearly 7,000 diseases considered rare in the U.S.”  *from NORD website

 

Do you have a rare disease?  Curious, have you ever contacted your representative about it?

 

 

 

Are you a Mary or a Debbie?

Today I’m happy to introduce a new friend, Kim, from her blog, I Tripped Over a Stone.  She is an amazing writer; I am so pleased she decided to write a little post for us.  Please jump over to her blog and check her out, you’ll be so glad you did.  

Hello my name is Kim. Wendy asked me to scoot over here from my blog and do a guest post for her. I happily accepted. You see, I consider Wendy a friend. We are similar in many ways, besides having invisible illnesses, we have the same kind of humor. I have no doubt we will one day meet in person.

I have Fibromyalgia Syndrome, Wendy has Meniere’s Disease. These are classified as invisible illnesses and both are chronic conditions. Neither is really a great one to have. Would you want want vertigo, inner issues and migraines or would you pick constant pain, difficulty sleeping and cognitive difficulties? Choose. Yes, choose right now! Fibromyalgia Syndrome or Meniere’s Disease?

Now that you have picked your illness, how would you handle this new, life altering, invisible illness? Would YOUR life be over? The answer is yes. Your life, as you know it, will be over. You will have to say goodbye to the old you and hello to this new person who feels like crap most of the time and is a shell of who you worked so hard to become. You will probably lose your job, most of your friends, and some of your family members. Since your illness is invisible, you will be deemed unreliable even though its your health that’s unreliable, not you. You will be scoffed at for being on any form of assistance and called a liar because you do not look sick. Welcome to your new life.
Now you get to choose again! Are you going to be a Debbie Downer or a  Little Miss Mary Sunshine? People usually pick one or the other. Debbie and her self-defeating behavior; why try when nothing will change, there is nothing left for me in this life, I am of no use. Now Little Miss Mary Sunshine knows everything and it is making a brand new life, finding the right doctors, support groups, and will forge ahead! These are the personas we sometimes show others. In reality, we are sick and tired of being sick and tired. We just want the pain, the vertigo, the migraine…to end. A cure would be great! Until then, we take our medication. Sometimes we will go to extremes and have surgical procedures, with no guarantee of a positive outcome. And we read everything; news of every new pill, treatment, therapy, hoping we will stumble upon our way out of this illness. So who is the persona you show to the outside world, Debbie or Mary?

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Ok, you can be yourself again. I am am not very found of Debbie or Mary but in a pinch I will become one or the other. I’m never quite certain who I will pick, it depends on the circumstance. It was not fair of me to expect you  to choose either. But life is not always fair!

In closing, Wendy and I will continue on our individual health journeys with a little help from each other and you! Being able to tell our stories and allow people to see us is quite terrifying at times. But somehow our paths have led us to this place and we are so very glad it did. We have been given a gift! A place to share our lives and the ability to meet such wonderful and endearing readers of our posts.

I thank you, Wendy. I enjoyed being your guest today.

kim-post-2~Kim

Visit me at I Tripped Over a Stone.  itrippedoverastone.com