#HAWMC Day 30 – Health Activism Goals

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

hawmc day 30.jpg

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 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 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.

ha-award2011_finalist200-26

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!

wendy-in-sun

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 Day16 Activist Advice

Today is Day 16 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Wisdom Wednesday:
What advice do you have for health activists just starting out?
Share your words of wisdom for all the health activist rookies out there!

I guess my biggest piece of advice would be to just get started.  Just jump in and start.  I’ve been blogging for years, yet I feel like I’m just getting started.  I always feel like I’m just getting started, perhaps because I do little more than blog.  Recently I started my facebook page, and I’ve started being active on Twitter.  I’ve searched out others who posts about Meneire’s Disease, migraines, bipolar, chronic illness and pain in general.  I’m learning so much!

I can’t do a lot of the things I’d like to do as a health activist.  I’d love to be able to be a voice in person, to speak, to go to conferences, to be more involved.  But alas, I can’t.  I may try more in the future, but I’ll admit at this point in time I’m too afraid to try much more than I’ve been doing.  It has been very rewarding though to get to know so many people who not only understand what it’s like to go thorough the same things I do, but are able to put a voice to it.

My recommendation for starting out to be a good activist.  Start slow.  Don’t bite off more than you can chew all at once, you will get burned out way too fast.  Focus on one thing at first then move on to the next.  If you blog, make sure to blog on a regular basis. No mater what form of social media you like, be sure to stick with it.  Post often. Make contacts.  Believe in what you are doing.  Care.   I guess that’s the biggest thing, that’s what will keep you going, you must care.

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 15 – Favorite Health Advocate

Today is Day 15 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Time to spread the love.
Shout out all your favorite Health Advocates!
Make sure to share a few sentences explaining just how grateful you are for them.

your-voice

image source click here

Listing all of my favorite Health Advocates would take up a book.  There is no way I can give a shout out to all of them in this tiny amount of space.  When I first read this prompt I thought it read that I was to give a shout out to my favorite health advocate, and I thought that was impossible, but I thought of a way to do it, kind of.  Listing all, really is impossible.  Please see my post from Friday, Friday Follow, for a list of many of my favorites; there are still more, but that will give you a good start.  Today I’ll just list a three blogs I’ve been following the longest that I feel are still doing an exceptional job.

Denise is an advocate for Meniere’s Disease, hearing loss and service dogs.  She tells her story with wit and flare in a weekly post on her blog Hearing Elmo.  There you will hear about her life with Meniere’s Disease, working and studying in academia, her family, life with a service dog, and her Faith. I’m proud to call her friend.

Madelyn writes at ADD…and so much more, as you can tell by the title she is an advocate for ADD…and so much more!  Madelyn’s blog is a place for her to “let you know about new ADD opportunities and to post all kinds of seemingly disconnected content.” This blog is intended to help: anyone with an Executive Functioning Disorder.  I don’t have ADD and I get so much from her blog.  She is an ADD coach, has won a number of awards, and I think she’s just the bomb.

Kara from Polishing Dookie does an exceptional job making people feel comfortable with her illnesses with a sense of humor and intelligence that keeps you reading.  Her tag line “Making the most of the sh*t I’ve got left” shows her sense of humor about her IBD (Irritable Bowel Disease).  Kara takes you on a ride that is her life, and you will be happy to join her.

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.

Blogging Brings out the Best of Me!

The prompt from BlogHer today is “Does blogging bring out your best or worst self?”  This was an easy one for me to answer….Blogging definitely brings out the Best of Me!

The Best of Me! photo taken Aug.2010

The Best of Me!
photo taken Aug.2010

As any long time reader of my blog knows, I tell all the details of my illnesses, I don’t sugar coat it, but blogging helps me put it all in perspective.  The people I’ve met through my blog encourage me, support me, and have made me want to be a better person.  A better advocate for those with the same illnesses.  A person who doesn’t give up, one who always strives to make life better….even if there is no way to make an illness better.

When I feel down about things, I tell about it here,  but by telling it here makes me want to feel better about things.  I don’t like it when I feel I’m not handling things well.  A friend says that she will “Fake it until she can Make it.”, meaning she will Fake feeling good until she really starts feeling better.  We both realized that when we catch ourselves slipping into that dark, sad state, if we try to keep our thoughts positive, we will soon feel more positive.  No, it doesn’t always work.  But it works enough that I keep doing it, and have noticed a big difference.  (I must note here, I do have a mental illness, Bipolar I, therefore sometimes it doesn’t matter how much positive thinking I may do, nothing can help if my medication isn’t working.)

Blogging makes me stretch myself.  I think about things I may not normally consider.  I dare to write about things I may not have even talked about before.  Why?  Because I know there are others out there who are going through the same type of things I am, by telling my story, in detail, I might reach someone who really needs to know they are not alone.

Having multiple chronic illnesses has reduced my self-esteem immensely.  Through blogging, I now feel I have something to offer, my experiences, and I have found I can write pretty well.  No, I’m not the greatest writer, and the way I write may not appeal to everyone, but some people really find my writing interesting and easy to read.  I’m thrilled to learn this and hope I can continue to reach those who may benefit from what I’m writing about.

Blogging makes me accountable, it makes me follow through on what I start….most of the time…if I tell my readers I’m trying something, I do it!

One day I decided to start a blog, an on-line journal if you will, to keep up with everything I was going though…..then one day someone took the time to email me about what I had written.  She told me how alone she had been feeling, and how my blog had helped her.  After that day, each time I write I think about how my words may reach someone who needs to hear just what I’ve written….Yes, blogging brings out the Best of ME!