Do you feel inspired?


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



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.



A day of trials


caring hands

Yesterday was filled with the trials associated with migraines and slow vertigo.

I barely got out of my chair today, and that’s okay.  I spent the day focusing on self care, taking it slow, and not beating myself up because I couldn’t go to PT, or do any of my exercises.  Luckily, hubby worked from home today, so he was here to help me any time I needed to navigate the world around me, like…umm….going to the bathroom.  My walker is great, but it doesn’t make me feel as safe as he does.  (if I really start to fall, the walker just comes with me, hubby holds on tight….I wish everyone had someone like my Stuart in their lives)
How do you handle a day of trials?


*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?


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.




Distraught…well, not that bad.

I’m sorry.  I haven’t been paying attention to my blog and I haven’t been supporting others.  I’m sure you all think I’ve dropped off the earth….maybe not, maybe it’s just me.

I mentioned in a previous post that I hurt my back.  Um, kinda.  I started having back spasms as side effects to a medication back in May, then the med was changed and I was put on another that caused akathisia (the need to move – like restless leg all over), this caused my muscles to tighten even more.  I saw my GP about it and she gave me muscle relaxants.  It didn’t get better.  I was sent to PT.  It didn’t get better.  I was put in steroids, they seemed to help some.  I was sent to a specialist, he gave me lidocaine injections in my back.  I was much worse the next day.  After a couple of days of that, I was once again put on steroids.  This time I think I’m having every negative side effect you can have from a short dose of steroids.

These side effects are hell.  (they are getting better)  My moods, oh my goodness.  I’m so sad, I am crying all the time.  I’m scared, I keep having feelings of intense fear wash over me.  Two nights ago, I was convinced I was dying.  I’ve been having slow moving vertigo, I barely see it moving, but I feel like I’m moving, and I can’t walk without help.  My head has been killing me.  Extreme nausea has plagued me.  I can’t sleep.  and I’ve had 2 seizures.  Oh, let’s just say, I’m going through a rough time.  But don’t worry, it’s getting better.  I know my mood swings are from the steroids, but it’s hard to deal with.  Poor hubby.

Speaking of hubby, he has worked from home the past 3 days.  He hasn’t wanted to leave my side.  I’m so very grateful to have such a supportive and caring spouse.  He makes me want to be a better person.

After all of this, my back still hurts.  I still have 2 days of steroids left, and I have exercises to do, hopefully that will get me on the road to recovery.  To be clear, according to x-rays I have no damage to my bones, it’s all muscular.  The muscles simply will not relax and they spasm often.  I have not had an MRI.  I cannot have an MRI because of my cochlear implants.  If they need more imaging it will have to be a CT scan.  We’ll cross that bridge if it comes.

Forgive me this post of self pity.  I will try to post more often, and get out there and support others too.  I miss you.



The Boot and The Back

Friday was a normal day.  I didn’t have a lot to do (bored).  I’d been sitting in my chair reading when I got up to let our dog out.  I got about a two feet and I ran into this:20170718_112901

again…..and did this

broken foot


About 4, or was it 5, years ago, I tripped on my walker and broke my foot.  At least that time I was using it.  On Friday it was just sitting beside me.  I haven’t needed it lately, but I keep it close, just in case.  A little too close to my foot as it turns out.

It hurt, like it does when you stub your toe, I didn’t think it was broken.  It just didn’t hurt enough.   I had this discussion with another chronically ill friend and she said the same thing about when she broke her foot.  It really speaks volumes as to how differently we feel pain.

Stuart talked me in to going to Urgent Care to get it checked out since I’d broken it before,  and was told it would be easier to break again, I decided it’d probably be a good idea.  (I hate to say it, but knowing we have met our out of pocket maximum for the year, made it an easier decision.)  I hobbled in Urgent Care, got checked in and was seen right away.  I had an x-ray and the attending physician said my x-ray showed irregularities.  She couldn’t tell if what she was seeing was all from the last break or if it was a new break.   She thought it was broken, but a radiologist needed to read it to be certain.  I was sent home with The Boot, and the radiologist would call on Monday.  They did, and it is broken.

This time it’s not as bad as it was the first time.  I didn’t twist my ankle or anything like that.  I’ll be in the boot for 4 weeks instead of 12.   It’s hot and heavy, but it is taking good care of my broken foot, for that I love my boot.

On the other end, I started physical therapy (PT) for my back last week.  What’s wrong with my back you ask?  I’m not exactly sure.  I did fall, so I might have wrenched it then. (that was over a month ago).  I had severe akathisia (the need to keep moving) for over a month.  This caused me to constantly tense my muscles.   It’s possible, my back just never calmed down.   I also have arthritis in my neck, this is causing a lot of pain recently.  PT will hopefully help that as well.

So far, I feel like the PT has been aggravating my arthritis.  I discussed this with my physical therapist yesterday and he did a few things differently.  Hopefully, these changes will improve the pain and still help me get stronger.  If not, I know I can talk with him about it and we will work to make it better, to make me better.   I’m so impressed by this office.  Appointments are supposed to an hour long.  As most of us know, that normally means you are actually seen about 45 minutes, sometimes less.   My normal amount of time at this office is 1 hour 15 mins.  Yesterday I was there for an hour and a half.  I hope I get the results I’m looking for, it won’t be for lack of trying.

I’m happy to say that my migraines are still much, much better.  I’ve had a few, but nothing like I was.   I haven’t had a lot of vertigo.  This past week I’ve had a few times where I’ve had really fast spins that last for just a couple of seconds, or very slow movement that I can barely see (but it makes me very nauseous).  Overall, I’m feeling healthier than I have in years.  I don’t know how long this will last, so I’m trying hard to make the most of this time.


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.