#HAWMC Day 30 – Health Activism Goals

Today is Day 30 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

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I’ll be absolutely honest, I don’t like to set goals.  Since I’ve been sick, setting goals always seems to lead to utter disappointment.  That doesn’t mean I don’t make plans, I do, but if they don’t come to fruition, I don’t get bent out of shape about it.  If I made a set goal to accomplish with my health activism I would feel bad if I couldn’t follow it through.  With this in mind I do have a few things I’ve been working on that I’d like to follow through on.

For the past six months I’ve been writing a post called Mindfulness Monday, it contains a couple of mindfulness quotes and an illustration created by me.  I’ve worked hard to make sure all the illustrations are created by me, even if I have to reach back and use things I created a while back.  I plan to keep this going.  I think nurturing the mind and spirit is just as important as nurturing the body.

Recently I’ve become more active on Twitter, I plan to keep growing this avenue of reaching out with my activism.  I’m getting more involved in Twitter chats and hope to be able to contribute more in the future.  (I really love intake.me‘s Patient Chats.)

I’m thinking of becoming an ambassador for VEDA (vestibular.org) however, I’m not sure I can follow through on all the requirements.  I’ve decided to do the requirements for a while before signing up, to make sure I can do it.  A kind of “try it out” first.  I think this will take the pressure off of me to be able to do it right from the start, and I won’t feel guilty if I can’t keep it up.

This past week has once again taught me that making plans is not something I can do lightly.  I’ve been having vertigo on and off a LOT the past week.  I’m proud of myself that I finished this blogging challenge.  I’m very proud of all that I’ve accomplished this week in spite of being stuck in a chair watching the world move around for most of the time.  (just going to the bathroom by myself is a major accomplishment, yes!!)

To sum up, this month I realized I’d like to get more involved in being a health activist, I’m not exactly sure what that means, but I am searching for just the right something.

I’m participated in WEGO’s #HAWMC, if you’d like to read more posts from this month 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 29 My favorite #HAWMC blogger post

Today is Day 29 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Have you checked out fellow HA’s pieces for our HAWMC?
Choose one of your favorites and repost it to your blog.
Be sure to include a few sentences on why you love this piece!

There are so many great blog posts by bloggers contributing to WEGO’s Health Activist Writers Monthly Challenge (#HAWMC2016) I had a hard time picking just one.  I also had a very hard time going back and reading over all of them to pick the best one I could find.  You see I’ve been having vertigo a lot recently so completing this challenge has been a big challenge for me, but it looks like I’m going to do it!

This blog post by Julie, on her blog It’s just a bad day, not a bad life, is titled Dear Julie, An AVN Diagnosis.   I picked this post because I too had Avascular Necrosis.  I’m lucky that mine was taken care of with a hip replacement, but I know it could show up in other joints.  This letter explains AVN and other illnesses Julie has, and how she is persevering every day.

dear-julie-a-letter-to-myself-post-diagnosis

(below is a repost of Julie’s post.  To see the original please click on the title of the post, I follow Julie on her blog, It’s just a bad day, not a bad life, and on Twitter, she is awesome.)

Dear Julie – An AVN Diagnosis Letter

Avascular Necrosis. WTF?! Like, what the hell.

I didn’t even know bone could DIE?! THAT’S A THING?! WHATTTT!?

For the past few months, you KNEW something was wrong. Something was off. There was no reason you should have been in that much pain.

Yet, your healthcare team told you otherwise.

“Oh, you’ve just overdone it at therapy. Take these Percocet’s and rest for a week.”

“There’s nothing wrong with your knee, you’re just healing.”

“Just keep pushing through. Once you have your range of motion back your pain will subside.”

“Here’s a kenalog injection and a higher dose of pain pills. Come back in a week.”

BUT YOU KNEW BETTER! You KNEW there was something seriously wrong.

December 17th will be a date that you’ll never be able to get out of your mind. Today, when you crutched your way into that doctors appointment, I know you wished that something would show up on your scans. Last week when you had your bone scan done, the technician told you you “lit up like a Christmas tree” (which you loved the holiday reference btw. It was kinda perfect), you knew you’d get answers today.

But the answer you received was NOT the answer you thought.

You anticipated him saying that your ACL finally finished tearing apart or that there was a complication from your last surgery. But that wasn’t even remotely close to the case.

You’ll always remember the look on your doctor’s face when he walked into your examination room.

“Your bone is dead. It’s called avascular necrosis. I know what it is, I’ve seen it before. But I don’t know how to treat it and I don’t really know where to send you…” will echo through your brain for YEARS to come.

You mind will race and question the fact that he told you you’d probably need a knee replacement. Then you’ll think about how he said you can only get 2 in your life. . . and that will spiral into you crying about how when you’re 60 you probably won’t be able to walk.

Your Dad will joke about how once you’re 60 you’ll probably be able to get avatar legs. But it won’t make you feel any better.

Tonight you’ll spend your evening crying.

Crying about how you may not walk again. Crying how you’ll probably need a knee replacement. Crying how your pain IS valid and that there IS something seriously wrong. Crying because you have no idea where to turn.

And while you’re crying, your parents will be crying too.

Your mom will be upset because she can’t wrap her brain around this diagnosis and your dad will be in shock with the news and wish you did something sooner.

You’re 27 years old and 2 parts of your bone are DEAD. It’s going to take some time for you and your family to wrap your heads around it. BE PATIENT.

I know you’re in pain. So much pain that you’re unable to sleep. You’re exhausted. You’re worn down. You’re a wreck.

But, you don’t need to be a hero when it comes to dealing with this pain.

Your parents will ask you numerous times if they should take you to the hospital to help your pain. You’ll pass it off as you’re fine.

But you’re not fine. Take them up on that offer and GO.

Picture from the first hospital room I was in during my week long stay. Dear Julie, A Letter to myself after receiving the diagnosis of Avascular Necrosis, Psoriatic Arthritis, Complex Regional Pain Syndrome itsjustabadday.comI know you want to celebrate Christmas and enjoy it, but you’re not going to enjoy the day. You’re going to end up passed out for the majority of it because you finally caved and took high doses of pain pills. You’re going to end up going to the ER early in the morning the day after Christmas because you’ve hit a breaking point.

Don’t wait – go earlier.

You’ll spend a week in the hospital and you’ll start to get SOME answers. You’ll receive 2 more diagnosis – Psoriatic Arthritis (officially, after having first heard it back when you were a teenager) and Complex Regional Pain Syndrome. As you leave the hospital, you’ll think that your AVN is the thing you need to treat first. . . but it’s not. You need to take care of YOU and calm the storm in your body before you even find a solution for your knee.

Oh, and also… Just to set realistic expectations. Don’t plan on counting on your orthopedic surgeon. He’ll provide you with no helpand will just frustrate you more than you need. Your Dad will take it pretty hard, but just know, in the end, you don’t end up needing this doctor. He actually does you a favor by stepping aside because it forces you to go out and find the best possible solution for YOU.

Put on your armor, because it’s going to be a battle for the next few years. You’ll face injections, pills on pills, stomach issues which make you unable to eat for months, nerve blocks, anxiety, depression, melanoma, rejection from over 29 different health providers – just to name a few of those battles.

But guess what, you’re going to be fine.

Actually, scratch that.

You’re going to be more than fine – you’re going to come out on TOP.

You’ll end up changing your whole life to manage your conditions.

You’ll end up having your path redirected to be exactly where you should be.

And, you’ll end up blossoming into the person that you’ve always wanted to become.

You’ll never define yourself by the diagnoses that you receive in December 2012, but you’ll use them to help fuel your passion, motivation and to help others.

I love you and you’re strong.

You’re going to get through this. One day at a time.

SPOILER ALERT: In a few Christmases time, you’ll get to film this video and be well on your way to recovery from your Avascular Necrosis. And, you’ll end up speaking at an FDA hearing regarding stem cells because of your AVN! GRAB THE TISSUES!

Wishing You A Pain Free Day!

Julie Cerrone | Spoonie, Autoimmune Warrior, Certified Holistic Health Coach, DoTerra Wellness Advocate, 200 RYT Trainee, Reiki 1, Nutrition Geek, ePatient Advocate, IT Consultant, Pittsburgh Based Practitioner Living the Chronic Life

 

 

 

This post was in response to the WEGO Health HAWMC prompt:

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.”

 

 

I’m participating in WEGO’s #HAWMC, 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 27 – Selfie

Today is Day 27 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Sunday Selfie: Post your favorite picture of yourself.
Don’t be shy, it’s time to shine!

I don’t really have a favorite selfie, so I just took one, it came out pretty good.

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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 26 – Care Page for the Newly Diagnosed with Meniere’s

Today is Day 26 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Time to use all your knowledge and experience as an Health Activist!
Create a “Care Page” for newly diagnosed patients.
Pull together 5 of your own blog posts that could help a newly diagnosed patient and
include 5 external resources you find helpful.

menieres-ear

I’ve written a number of blog posts that I think a person newly diagnosed with Meniere’s Disease would find interesting and, hopefully, helpful.  I think the best place to start would be a series on Meniere’s treatments, written by me and a few fellow Meniere’s warriors:  Meniere’s Treatments Part 1 – Diet, Meniere’s Treatments Part 2 – Medication, Meniere’s Treatments Part 3 – Surgery, Meniere’s Treatments Guest Post – Lin, Meniere’s Treatments Guest Post – Suzanna, Meniere’s Treatments Guest Post – Angelea.  And one post I thought might help new patients explain vertigo is, What’s this Thing Called Vertigo Anyway?

5 External Resources that may be helpful:

 

 

I’m participating in WEGO’s #HAWMC, 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 Day25 – Change

Today is Day 25 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

As health activists, we are on a mission to innovate healthcare.
If you could change one thing in the healthcare landscape right now, what would it be?

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image source here

I was speaking with another health activist and we were saying, that’s just it — there are so many things that are broken, so many things that need to be mended, so many changes made, that choosing just one thing is like picking just one specific glass bead from a bowl of a thousand.  In the perfect landscape, there wouldn’t need to be health activists– health care would be as it should be.

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 24 – Focus

Today is Day 24 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Choose 3 images that represent your health focus.
Share the images in a post and explain why you chose each of them.

I don’t really know what they mean by “health focus” so I’m going to  chose images that represent my illnesses or what I focus on in terms of my health.

vertigo-caught-in-motion

I took this photo during a vertigo attack.  I was starting to take a photo of something and suddenly a vertigo attack started and this was what I got.  To me this represents my vestibular illnesses.

headache-2

This manipulated photo of me represents the pain and aura of my migraines.  I use this with other manipulated photos to show my doctors my level of pain.

hope-for-dr-gray

I created this for one of my doctors because she gave me hope when I didn’t think I had any left.  Now I realize there is always hope, no matter what.  This graphic represents that hope.

I’m participating in WEGO’s #HAWMC, 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.

 

*all images on Picnic with Ants are created and owned by Wendy Holcombe unless otherwise noted.

#HAWMC Day 23 – Say What??

Today is Day 23 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Say WHAT?!
What’s the most ridiculous thing you’ve heard about health or your condition.
Was there any context?
What did you think at the time you heard it – and what do you think of it now?

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frabz.com

This past year my husband called and set up my mammogram, he told them when he called that I’m deaf, so the attendant would be aware.  When we showed up for the appointment a woman came over to me and started signing.  I had no idea what she was there for.  She said that she was my interpreter.  I don’t know sign language.  The office assumed that I needed an interpreter because my husband told them I’m deaf.   Yes this was a nice gesture and it was something they could have assumed since he told them I’m deaf, but they didn’t ask, and it cost the office money to get an interpreter.

You would not believe how many people expect me to automatically know sign language and be able to read lips.  This knowledge was supposed to somehow magically absorb into my brain immediately when I lost my hearing.  Really, people expect this.  You would be surprised at the people who knew me before I lost my hearing and when I lost my hearing they thought I could magically read lips, even better are those who thought I could suddenly speak another language.

Another ridiculous thing I hear is to take certain supplements and I’ll be cured.  Normally I hear this from people trying to sell me these supplements, but not always.  I do take my share of supplements, they may help a little, but there is no way a supplement is going to cure me.  I have chronic illnesses, there is no cure.  Often people with Meniere’s are so desperate they will grasp at anything, but there is no cure, no one knows what causes it, a supplement is not going to make it go away.

The most ridiculous thing I’ve heard from a doctor happened just this past year.  I went to him after going to John Hopkins Medical Center (JH) about Meniere’s Disease to discuss having him do a procedure on me that the doctor at JH suggested.  I’d been to this doctor before, this was a visit to further discuss my tests and options.  He walked in and started talking about my tests then looked at me and said that I “might have this thing called Meniere’s”.   WHAT??????

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 21- Just Keep Swimming

Today is Day 21 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Monday Motivation: What’s your life slogan?
Explain what words or mantra keep you going and why.

I’ve spoken about quotes that help me through, but there is one mantra that I will start to chant when things get particularly tough.

Just keep swimming.

When I saw Finding Nemo and heard Dory say, “Just Keep Swimming”, to get her through all of her challenges, I started saying it to remind me to keep going even through the hard times.   It started out as a joke, but it stuck around because it made me feel better.  If I can “just keep swimming” I’ll be okay.

just-keep-swimming
image source here

I admit when this prompt came up I had no idea what to write about, I’ve already told most of what I live by, my favorite mindfulness quotes that mean so much to me and the chant I use when I have vertigo, but those things just didn’t seem to fit in here.  I turned and asked my hubby what he thought and he immediately said, “Just Keep Swimming”.   I guess it’s a pretty good mantra, and I guess he knows me pretty well.

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 20 Highlight of my Health Activist Journey

Today is Day 20 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is

What has been the highlight of your health activist journey?
We want to hear all about it, perhaps a conference, a podcast or meeting a fellow HA.
What made this experience so special?

There are three things I can think of that I’ve been particularly proud of during my health activist journey.

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I was nominated for a WEGO Health Activist Award in 2011. Please check out this post where I wrote all about it.  “I’m so very honored!  I’m a Finalist for the TMI – Wego Health Blog Award!

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And I was featured in an article by Sanjay Gupta.  You can check out that article here: How Vertigo Changed My Life.

These two events are very special to me because I felt that I was making a difference.  I knew I had been contributing something worthwhile and people noticed.  I don’t have to be noticed to continue to do the things I do, but it is nice.  Sometimes I’m not able to do much, it’s things like this that push me to do a bit more than I think I can.

The third thing is by far the most important to me, it is the people that I meet and the friends I’ve made on this journey.  The people I meet in the doctor’s offices, the people I meet on line….all the people I meet who care about health advocacy touch me.  I’m so lucky to have met such wonderful people and to have made some amazing friends.

 

 

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 19 Rough day? What do you do?

Today is Day 19 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Everyone has tough days, but how do you pull yourself out of the rut?
Maybe you blog, repeat affirmations or listen to a favorite playlist.
Write about what tools, tips or practices you use to lift your spirits after a rough patch.

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image source pixaby

When I read this prompt I was reminded of a post I wrote a few years ago, I thought I’d link back to it now for your reading pleasure.  Living In The Moment  In this post you will find one of the main ways I deal with the rough days.

A little list of things I do to deal with a rough patch:

  • I do things that get me involved with others.  I reach out.  I text, email, blog, talk….
  • I do things that relax me.  I take a bath, a nap, read, watch movies and  mindless TV…
  • I do mindfulness exercises.  I focus on staying in this moment.  I remember that the past is over and the future is not written (when I’m having tough days I can get caught up in “how good things use to be” and “how bad things will always be”, neither of these things are true, focusing simply on the present can make it not as overwhelming). I meditate and do deep breathing exercises.
  • I remember to be grateful.  I write in my gratitude journal, I am sure remember I have many things to be grateful for.
  • During particularly rough times, such as a very bad vertigo attack, I chant.  I have a special chant I learned in a yoga class years ago that my husband and I chant together when I’m extremely sick with vertigo, this helps to calm me down. Om bhur bhuvah svah tat savitur varenyam”
  • I have my go to books, and I seek out books on mindfulness.  I have books by Jon Kabat-Zinn, Thich Nhat Hanh, and others that I rely on, but the first book I reach for is How to Live Well with Chronic Pain and Illness, by Toni Bernhard.
  • One of the biggest things I need to do during a rough patch is to remember, it’s not my fault.  I’m often hardest on myself during a rough patch, so I try to practice self compassion during this time most of all.
  • During particularly rough patches I reach out to my therapist, remember, that’s what they are there for.

How do you get through a rough patch?  Any suggestions?

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.