Tag: WEGO HAWMC

#HAWMC Day 7 – Starting Advocacy

On By WendyIn #HAWCM, Chronic Illness3 Comments

Today is Day 7 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.

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The start of my advocacy journey for Meniere’s Disease and other chronic illnesses is kind of a long story.  First I found out I am allergic to wheat and suspected to have celiac disease.  Here, let me ‘splain….I had been generally sick for a long time when I found out I’m allergic to wheat, so I stopped eating wheat.  I started to feel a whole lot better, but I was still getting sick sporadically, so I decided to stop eating gluten.  My doctor then suspected that I may have celiac disease.  I was given the blood test but tested negative, I was given it again and tested positive.  This provided no definitive results, so I would need a biopsy from my small intestines.  However, the only way for this test to work was for me to start eating gluten again for a month or two.  I asked what the treatment was if I was found to have celiac disease and it was a gluten free diet.  Well I was already eating that way, so I decided to just keep on a gluten free diet instead of having the test.  Maybe I’ll have it one day, but probably not.  The doctors are pretty sure I have it due to the last blood test, I don’t really care, I know I can’t eat gluten.

This was before there was a lot of knowledge about a gluten free life style and celiac disease, so I became an advocate.  I started a blog and worked hard to bring awareness.  I worked with local groups.  I was a taste tester for Whole Foods Gluten Free Bake House.  It was an exciting time for me, I felt like I was making a difference.  Then my Meniere’s Disease got so much worse.

When the Meniere’s Disease went bilateral, meaning I suddenly had it in both ears instead of one, I had to rethink my life.  (if you don’t know about Meniere’s Disease, and you’d like to, please see Meniere’s Disease-My Story at the top of the page.)  Once I saw my new doctor at Duke Medical Center I had renewed hope (more than I should have really).  I was going to focus on getting healthier.  I wanted to increase my exercise and start eating even healthier.  I decided to stop writing my gluten free blog and start a blog all about me getting as healthy as possible with Meniere’s Disease and (suspected) celiac disease.  This blog was called 365 Days to a Healthier Me.

I soon discovered I was not going to be able to focus as much on getting healthier as I was on simply getting through the day.  The vertigo was happening almost daily and I was losing my hearing rapidly.  I decided to start writing about my experiences with Meniere’s Disease (I stopped writing about a gluten free lifestyle by then) and this naturally morphed into advocacy.  I found others were out there who were struggling as I was and needed some support.  Soon I started talking about other illnesses I struggle with on a daily basis, such as chronic migraines and bipolar disorder.  I have found that people with chronic illnesses need a voice.   I hope I can add a little voice to a lot of other voices.

After the loss of my hearing and with continued struggles with vertigo I haven’t been able to advocate in person, but I continue to try to keep up the good fight via the internet.  Sometimes I’m not able to do as much as I’d like due to my illnesses, but I’ll keep trying.  That’s all we can do.  Keep trying.

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

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

*All images on this site and the creation of Wendy Holcombe unless otherwise noted.

#HAWMC Day 6 – Superpower Sunday!

On By WendyIn #HAWCM, Chronic Illness4 Comments

Today is Day 6 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Superpower Sunday! If you had a superpower – what would it be? How would you use it?

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image found here

I thought long and hard about this question and the first answer I came up with was the only logical one I could think of.  My super power would be the ability to control the biological structure of any organic matter.  In other words, I could heal.  (I’d be able to do harm if I chose, but I’m a good person, so I’d only use my ability to heal.  Of course, there are a few doctors that I wouldn’t mind feeling the way I have for a few moments. – NO! Really, I would only use my powers for good!!)

How would I use my powers?  Hand on head…”I heal you, and  you, and you….”  You think that would be simple.  I’d heal people.  But really things would get complicated very quickly.

I know I’d have to keep my ability a secret.  I’d have to be the typical super hero and have a secret identity.  I know I wouldn’t be able to help everyone and that would break my heart.  How would I chose?  Would I only be able to help those who happen to be close to me?  Would it simply appear to be a miracle?

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image found here

As much as I’d like to heal everyone I know I couldn’t, and I couldn’t sit around 24 hours a day just healing people.  Would I go around the country with a traveling show healing those who came to my tent?  “I Heal You Brother!” No, I don’t think that would work.  I know I’d like to heal those who I’ve met who have suffered so much, but there are so many more whom I have never met.

I know I’m going around in circles and repeating myself, but this is the problem with thinking up a superpower.  We don’t think about the reality of them.  I want to heal people, but I don’t know how to chose who to heal.  The reality is I won’t be able to heal everyone.  I’d have to live my life in secret.  I would only be able to heal those whom I came in contact with.  That wouldn’t be enough for me.

I think it’s best to not have a superpower.   We have to find our way in the world.  Perhaps we can change the world as we are.

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

#HAWMC Day 4 – Day of Diagnosis

On By WendyIn #HAWCM, Chronic Illness3 Comments

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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pixabay.com

 

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.  🙂

#HAWMC Day 3 – Quote

On By WendyIn #HAWCM, Chronic Illness1 Comment

Today is Day 3 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

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I post mindfulness quotes on my blog every Monday, this quote from James Baraz is my favorite it shows the essence of mindfulness in just a few lines.

“Mindfulness is simply being aware of what is happening right now without wishing it were different;  enjoying the pleasant without holding on when it changes (which it will); being with the unpleasant without fearing it will always be this way (which it won’t).” – James Baraz

When I read these words they resonate with me.  When I’m having a good time and I realize I may pay for it later, I understand that things will change and I will be okay with it.  I will not try to hold on to these good times, I know it will end and that’s okay.  It is this moment that counts.

I really rely on this quote during bad times.  “being with the unpleasant without fearing it will always be this way (which it won’t)”  What an inspiring thing to say.  Remember no matter how bad it is, this moment will not last.  Things will change.  The unpleasant moment will not be here forever.  When I go through a difficult medical test or treatment, I remember, it will not last forever.  Things will get better.   When I’m in the middle of a vertigo attack, I constantly remind myself that it will not always be this way.  It will change.  The vertigo will stop.  It-will-stop.  It will not always be this way.  This is very important when I have vertigo because during an attack I am always afraid it will not end.  Remembering that it will end, that all unpleasantness has an ending, helps.

There is another quote that I think goes well with this one.  It is by Eckhart Tolle – “Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”

I think on this a lot.  When I am having a bad day I remind myself to accept this day as if I had chosen it.  If I chose it then there is nothing wrong with it.  How can I not like it, if I chose it?   If I’m having a vertigo attack, I will work with it, not against it, and things work out much better for me.  (I must say here that vertigo attacks are one of the most horrific things I have every experienced, if not the MOST horrific.  Vertigo attacks with Meniere’s Disease can last for a few minutes to days. Normally mine last for hours….many hours.)

These are a couple of quotes that get me through the day.  There are many mindfulness quotes that run through my mind when I’m having a particularly rough time.  Reading inspirational quotes really helps me keep a good grasp on things.

I have one more quote that really gets me through.

i-believe-in-youMy mother told me this often.  I particularly remember her telling me this when I was in college.  I was the first in my family to graduate from college, when I was attending there were a few times that I doubted myself.  I was going through a very rough time undiagnosed with Bipolar disorder.  I was misdiagnosed for a long time.  When I was in college it was a very rough time, but my mother always believed in me.  It has always meant a lot to me to have that belief.   I have found that the people who touch me on my blog believe in me and I believe in them.  This is a great support system.  This is very important when you have a chronic illness.  This quote is very important.  Remember, I believe in you.

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.  🙂

*all artwork on Picnic with Ants has been created by Wendy Holcombe unless otherwise noted.  (I can’t remember if I created the “I believe in you” graphic or not.  It was in my files)

#HAWMC Day 2 – Blogging Process

On By WendyIn Chronic Illness6 Comments

Today is day 2 in the #HAWMC.  (Health Activist Writers Month Challenge)  If you’d like to read more blog posts about this please check out WEGO’s Facebook Page.  And don’t forget to Like my Facebook Page – Picnic With Ants.

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My blogging process is a bit different as I change it up a bit.  For some posts I just shoot from the hip; I write what comes to mind and hit Publish before I change my mind.  🙂  Other posts I do a lot of research so it takes time to develop those post, they can take days to write.  Still others I write in advance.  I know I am going to post them so I get them ready ahead of time and schedule them to come out.

I do try to edit my posts, unless I do a stream of conscious post, even though it may not seem like it sometimes.  Isn’t it funny how you can read the same thing over and over and it looks just right until after you hit Publish then you notice it has a lot of errors?  Really, I did read it over for errors, really I did!

Trying to decide what to blog about is the hardest thing for me.  I will sometimes come up with some great ideas and I get very excited to write.  Other times I’m stuck.  I have no idea what to write about.  I don’t want to always write about me and the newest things that may be going on with me and my illnesses, especially if nothing has changed in a while.  Having a chronic illness can mean that things just stay, well, chronic.  They may not progress at all.  Things are just the same.  It can be a challenge to come up with new topics to write about when you feel things are just the same.

I read a lot of blogs and I feel a lot are either all down in the dumps, or they are all sunshine and rainbows.  I want my blog to be somewhere in the middle.  I want people to come here and know that having an illness doesn’t mean you have to be sad about it all the time, but you also don’t have to be positive all the time.  Here is someplace in the middle.

Don’t get me wrong, here you will find the down and dirtiness of being ill, and you will also find good days and thoughts that may help you along the way.

Oh, I’m moving away from my process.  Well sometimes my process is to just sit back and talk to my readers, like I am right now.  You are, after all, who I write this blog for.  Well you and me.  🙂

It seems my blogging process is rather eclectic.