#HAWMC Day 4 – Day of Diagnosis

Today is Day 4 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.

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Dear Wendy,

You’ve been waiting for this day for a long time.  You’ve been diagnosed with Meniere’s Disease before, you just didn’t know that the doctor didn’t really diagnose you.  He didn’t know much of anything.  I’m sorry you had to go through that.  He didn’t even put the diagnosis of Meniere’s in your records, he only told you that you had it.  So today you sit there wondering….”Do I really have Meniere’s?  Do I have some brain tumor?  Is there something worse?  Could it be something minor and I’ve been suffering for 7 years because I have been going to a doctor who “doesn’t know much about Meniere’s”?  How could he have looked you in the eye and said that?  After he has been treating you for SEVEN years?  Now that it is in both ears he admitted he didn’t know much.  WTF?

So today you are here at Duke Medical Center to see this new doctor.  The doctor won’t even see you until you have been through a series of vestibular testing and had hearing tests.  Don’t be so nervous.  The tests aren’t as scary as they might be, the people who run the tests on you are very nice.  Don’t get me wrong the tests are intimidating, but the wonderful people there who are taking care of you make it much easier.

After the vestibular testing and the hearing test you go back to meet the doctor and you are diagnosed with Meniere’s.  The tests showed that you have vestibular damage, but there is no cause shown, and you have all the symptoms of Meniere’s Disease.  Unfortunately, you have it in both ears.  That is going to make it more difficult for you, but you are strong, you will be able to deal with it.  The disease is progressive.  You don’t know it yet, but you will lose your hearing.  That is not as scary as it sounds.  You deal with it.  Really, it will be okay.

The doctor is very understanding and doesn’t pull any punches.  He tells you that Meniere’s is one of the worst diseases he knows of that won’t kill you.  There is no cure.  There are some treatments, but not a lot.  He also tells you that it is a disease of random punishment.  He is refering to how the vertigo hits.  He explains it is likened to a soldier at war.  He knows he will be under fire, he just doesn’t know when.  He is always expecting it.  You will always be expecting the random punishment of vertigo.  It’s a horrible thing to live with.  But you will deal with it.  One moment at a time.

You learn all of this in one day.  Some things you were told gave you some false hope.  You will learn there isn’t a “normal” in Meniere’s.  There is a lot you will have to deal with over the next few years.  Know you will be okay.  The more you start to follow a mindfulness mindset you feel better about how things are.

The day of your diagnosis is just the beginning.  You have so many more days that are more important than that first day.  It was just the beginning.  You have no idea what kind of ride you are in for.  Don’t give up, even when it seems like there is nothing left.  (don’t worry I know you don’t give up….won’t give up!)  Focus on each day as it comes, don’t worry about tomorrow so much.  Try hard not to focus on the past.  It is over and you can’t get it back.  Focus on today, right now.  Make today the best you can.  But remember, we all have bad days.  Be gentle with yourself.

If you’d like to read more posts from today please check out WEGO’s Facebook page.  and don’t forget to check out Picnic With Ant’s Facebook Page too.  🙂

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Don’t Let My Situation with Meniere’s Disease Depress You!!

I haven’t written in a long time because, I had someone with Meniere’s tell me they read my blog and found it very depressing.  This is something I have feared for a long time.  I’ve seriously considered stopping this blog because of this very reason.  I do not want people to read about me and think that this is their fate.

I wrote a lot about having Meniere’s Disease and what it was doing to me before I knew I had “MORE THAN MENIERE’S”.    Even then we knew my case was very atypical.  If you have Meniere’s Disease do not take the progression of my disease as a road map of what your life will look like.

This blog is a journal of my experiences.  I am far from a textbook case.  As my doctor has said…..I am different from any case he has seen.  (he works with a LOT of people with many Vestibular issues at Duke, especially Meniere’s…he is the head of the Vestibular Clinic)  He has told me that there is nothing else he can do for me.  It is recommended that I go to John Hopkins Vestibular Clinic.  They do a lot more research in vestibular disorders than Duke does.  Frankly, I haven’t found any other place that does more research in vestibular disorders than John Hopkins.

Most people with Meniere’s never go bilateral.  Those who do, most never lose their hearing.  For those who do, it normally takes a very long time.   And the very, few who get to that point normally have very little to no vertigo after that.  If they ever do it is very mild.

I’m very different.  When I went bilateral, I completely lost my hearing within 3 years, I now have cochlear implants.  I still have vertigo often.  Even with Cochlear Implants my hearing fluctuates a lot.  (by a lot, I mean many times a day…this is far from normal.  Some people with Meniere’s who have CI’s do have their hearing fluctuate if they have a vertigo attack, but not like I do.)  I will have times where I can go without severe bouts of vertigo for a while then I’ll have a month or so with attacks every day.  That is not normal for Meniere’s.  This is very atypical for this disease.  As my doctor said, I have more than Meniere’s.

I have tried to steer this blog to cover more of my chronic illnesses as a whole, and not focus on Meniere’s Disease.  It doesn’t seem to be working out that way.  My vertigo and hearing issues are a HUGE part of my life.  How do I not talk about them?

I do not want my blog to depress anyone…..I don’t want it to cause people to have less hope.  Meniere’s can be a very scary disease….I do not need to add to it.  I’ve always wanted to give people hope.  To let them know there is life beyond the disease.  That the disease is only a part of the patient’s life, it is not all of your life…it is not who you are.  Things are just different now.

Right now I really don’t know what I’m going to do with this blog.

If I change the focus, people will still see the past post and can see it as depressing, and disheartening.

I am thinking about making a static post that you have to see first when you come to my blog before going to other post, and then starting a new blog, that is much more positive, and not mention Meniere’s Disease as much.  I am afraid I may lose a lot of you.  I’ve changed blogs before, and I lost a lot of people.

Maybe I’ll just give it a try.  Or have 2 blogs for a while?

I just don’t know.

Right now.  This has really been on my mind and has me stuck.

Love and Peace to all of you!

wendy

Thankful for Today!

Drawing by Ayla Probst (10 years old) A surprise gift in the mail for me today.

Today was a good day!

I’m sitting here after a glorious day.  A day most people take for granted.

This week we celebrate Thanksgiving in the US.  It is a time to reflect and be thankful.

Today I am thankful for good days!

Most people wake up in the morning, and simply start their day, without a thought about it.  The first thing I do when I wake up is take stock of how I feel, and decide if I can make it to the bathroom alone or if I need to call for help.  Today I awoke to find myself feeling…good…I mean really good.  This is so unusual lately I was surprised, and very grateful because Stuart wasn’t home.  I got up, did my morning routine, with aw.  As I walked down the stairs I realized I hadn’t been downstairs since last Thursday, and that wasn’t for long.

I had a little to eat and decided to sit out on the back porch and enjoy the sun.  Today was a beautiful day!

Stuart was home soon and surprised to find me outside, and feeling so good.  Not just OK, but good.  I wanted to get out of the house, but wanted to make sure I didn’t over do it again.  We decided to take a drive, but right before we left I started to feel a little off.  Head a bit swimmy, so I decided to take some medication, just in case.  So we jumped in the Bug and put the top down.  We drove to a town near by, stopped at a drive in fast food restaurant, and had a treat.  We came home and I decided I still had some energy to spare, so we cut back the dead flowers, and I cut the herbs I could save after the last frost and hung them to dry.

Stuart went to the mailbox and I was so tickled to find a card from one of my favorite people.  A friend of mine’s daughter, Ayla, she’s 10 years old.  They live in Tucson so I rarely get to see them, but for every occasion she sends me a card, normally with a drawing included.  She knows how much I treasure her drawings.  You can see her drawing at the top of the post.  Yes, that is a penguin in the hot air balloon.  Ayla, loves penguins. Isn’t she the best?

Yes, you are right, it was last Monday that I felt so good.  So what is it about Mondays?  It’s not like my weekends are any different from every other day.  I said to Stuart, “So, am I just going to feel good on Mondays?”  He said, “No, you’ll feel good tomorrow, you have an appointment with Dr. Kaylie, and you’ll feel good on the 5th, you have an appointment with Dr. Gray.”  I just sighed, knowing he was probably right.

Isn’t that often the way?  We can feel like crap for the longest time, then the day we go see the doctor, we feel better.

I hate to even say this, but I kind of wish I would feel bad tomorrow, so my doctor could see what I’m going through.  *cringe*  I know I really shouldn’t say that out loud…or even write it.

Here’s to never taking a good day for granted, and enjoying the small things.

I decided that was enough.  I’m not going to push it.