Category: #HAWCM

#HAWMC Day 8 – I Know I Can!

On By WendyIn #HAWCM, Chronic Illness10 Comments

Today is Day 8 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Little Engine Post. Write a list post with 10-15 lines that start each with “I think I can…” Write 5 lines at the end that start with “I know I can.” They can be big goals or something that’s been on your to-do list for the last few weeks- it’s all up to you.

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image found here

I started writing this post and listed all these things under “I think I can” and realized that they all should be under “I KNOW I CAN”!  This post will list a lot of things that are a challenge, but I KNOW I can do it!!  It’s a pretty random list, things that came to mind as I was writing,and it’s in no particular order.

  • I KNOW I can finish this blogging challenge.  (having a chronic illness can make every commitment a challenge, but I know I can do it!)
  • I KNOW I can visit two friends in one day this weekend.  (this could prove to be a challenge.  I will be visiting them after riding in a car for 3  hours.  I hope all will go well.  I really want to see my friends, I don’t have many and I don’t get to see them often. I know I can do it!)
  • I KNOW I can help cook sometimes. (I actually helped hubby cook on Sunday!  Something I love to do, but has become too dangerous because of my disequilibrium and vertigo.  However, on good days, I can still help!)
  • I KNOW I can keep up my blog.  (there are times that I doubt I can keep this blog going.  When my health interferes it takes so much to keep writing, but I know it is then that I need to write the most.  I need to let others see me vulnerable.  There may be times that posts don’t come as often as I’d like, but I know I can keep it up!)
  • I KNOW I can be the best advocate for me. (there is no one who knows me as well as I do, therefore there is no one who can advocate for me as well as I can.  My healthcare team beware! 🙂
  • I KNOW I can have the courage to try new treatments.  (sometimes I feel I’m done, I just don’t want to try any more.  I know there is not cure.  I’m tired of trying.  But, I know I have the courage to keep trying.  I need to try.)
  • I KNOW I can go on vacation with my husband.  (We’ve been talking about going to visit family that lives close to 3000 miles away, I know I can fly and go on the trip.  Crossing all fingers and toes!)
  • I KNOW I can go shopping. (With my hubby or a good friend I know I can go shopping.  I just need my trusty walker and I should be good to go.  On a good day that is.)
  • I KNOW I can take a bath by myself.  (this really is an I THINK I can.  I may not be able to.  I have a lot of anxiety taking a bath or shower because of vertigo and overall disequilibrium.  I am better with a bath than a shower.  However, sometimes I still have vertigo start when I am in the bath and I need help, FAST.  So I think I can take a bath by myself.  That doesn’t mean I really can, so normally hubby helps me get in the tub and leaves me and I just yell if I need him.)
  • I KNOW I can have fun with my husband.  (we laugh together almost every day, not matter how sick I am.)
  • I KNOW I can be a good friend. (I think I’m a better friend now than I was before I got sick.)
  • I KNOW I can live with this pain. (sometimes I doubt this, but I know I can do it!  The  pain from the migraines and the degenerative disc can be overwhelming at times.)
  • I KNOW I can be an advocate for others living with chronic illnesses, especially those with Meniere’s Disease. (I’m just a little voice in a large pond, but I’ll use my little voice as much as I can.)
  • I KNOW I CAN……

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like 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.

#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.

caring-hands

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 5 – What’s your favorite platform to get your voice heard?

On By WendyIn #HAWCM, Chronic Illness2 Comments

Today is Day 5 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Are you all about 180 characters or less? Do you enjoy shooting the perfect photo? Or perhaps love sharing posts on Facebook.What’s your favorite platform to get your voice heard and why?

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social media (click here for photo origin)

Okay, I’m going to admit this is going to be a very short post for me.  My favorite platform to get my voice heard is my blog.  Here I can write it in 180 characters, but I don’t have to.  I can use as many characters as I like.  I can add a photo if I want, but I don’t have to.  I’m free to share my opinions along with facts.  Of course, I always tell if it is my opinion and not a fact.  (that doesn’t mean my opinions aren’t fact, often they are…so there.)  My blog is my preferred method to reach people.

I do have a Facebook Page that is relatively new.  I post a few more things on my Facebook Page than I do on my blog, but they aren’t detailed.  I’m starting to learn more about Twitter, but I admit I get a little lost on there.  I do attend some patient advocate chats on Twitter, they are very informative and supportive.  So you may see me on Twitter more often.  🙂

I don’t think I’ll ever be on Instagram or any place where I’m supposed to post photos, I’m simply not comfortable snapping photos all the time, especially of me.  And I must admit…. hubby would make fun of me.

It’s not all about what I post on my blog or Facebook Page and Twitter accounts, it’s also about the places I visit.  The blogs I support,  the Facebook Pages I Like, the Facebook Groups I Follow, the Twitter accounts I follow…these are the places I show my support.  These are some of the places that hear my voice.  Look in your comment section, you just might see me there.

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.  🙂  and you can find me on Twitter too.

*I accidentally hit publish on this post on November 4th, however, I should only have hit Save.  I hope everyone saw the completed post.

 

#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 1 What Drives You?

On By WendyIn #HAWCM, Chronic Illness10 Comments

hawmc_background_coverToday marks the beginning of WEGO’s Health Activist Writers Month Challenge.  I will attempt to follow each prompt every day to bring awareness to chronic illnesses.  Be sure to check out WEGO’s Facebook Page for more blog posts during this month.  Don’t forget you can always follow my posts on my Facebook Page too!

Today’s #HAWMC prompt is:  First, let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15-20 minutes without stopping…GO!

What drives me to write about my health?  Since the prompt says to write for 15 – 20 minutes I’m going to write stream of conscious, if I repeat myself or have grammatical errors please forgive me.

I started writing about my health for the same reason I still write about it, to help others who feel alone when faced with the same conditions I have been faced with.  I’ve found support through my blog and I hope I give the same.

I try to bring awareness about Meniere’s Disease, Chronic Migraine, and Bipolar Disorder and let other’s who have these diseases know they are not alone.

I also have other illnesses that I mention along the way.  Like Degenerative Disc, Hypothyroidism and others.  I’ve also recovered from Avascular Necrosis in my hip and like to give others with this condition hope.

What drives me is my illnesses and my love for others.  My compassion for others and myself.  I write because it helps me and in turn I hope it helps others.

What do I want others to know about my conditions and activism?

Well there’s an awful lot to know about my conditions, as there is more than one condition to cover.  I’ll pick just talk and see what comes out.

Meniere’s Disease – Meniere’s is diagnosed by the symptoms, there is not definitive test for it.  The symptoms are: Random attacks of Vertigo, Fluctuating hearing loss, the feeling of fullness in your ears, and tinnitus.  If you have all of these symptoms and they have ruled out other illnesses then by process of elimination they diagnose you with Meniere’s Disease.  The progression of the disease can be different for different people.  It is normally only in one ear, it can attack both ears. I have it in both ears.   It used to be thought that the disease would “burn” itself out.  As the patient lost more hearing the vertigo got better, until there was a leveling out period where the patient no longer has vertigo.  As can be seen with me that is not necessarily the case.  I am deaf now and still have vertigo often.  There is not sign of a “burn out” for me.   I do want everyone to know that this disease does not progress the same for everyone.  just because I lost my hearing does not mean other people will, I still have vertigo, but that doesn’t mean other people will.  I’m in a very small minority.

Bipolar Disorder – I want people to know that people aren’t crazy when they have this.  Being Bipolar doesn’t stop me from living a normal life.  I want people to know that not everyone is the same with this too.  I am lucky.  With medication and therapy I am doing very well, and have been for years.   Others are not so lucky.  Medication does not work for everyone. Everyone with this disorder has to work hard.

Chronic Migraines – I want people to know that migraines are not just a headache.  They are so much more than that.  They make you sick all over.  Having a migraine for more days during the month than not can put a huge damper on life.

It takes a lot to face the world with a smile on your face when you are faced with these illnesses and more, but with the help of mindfulness and a support from those who care about me I get by better than I could ever imagine.

This is some of what I want you to know about me and my illnesses and why I write.  I hope you will join me on this month long journey.  Wish me luck that I can accomplish this goal of posting every day this month!