#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.

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(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 28 – 5 Challenges & 5 Victories

Today is Day 28 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

5 Challenges & 5 Small Victories.
Make a list of the 5 most difficult parts of your health focus.
Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges5 most difficult parts of my health focus:

fear

  1. FEAR- My number one challenge is Fear.  I’m afraid of the vertigo.  Of course I’m afraid when I’m having it, but I’m constantly afraid I will have it even when I’m not.  I’m afraid of the pain, the migraine pain, the arthritis pain, all of the pain.  I’m afraid the pain will get worse and I won’t have any way to manage it.  I’m working through some stuff in my past and I’m afraid of what I’ll find out.  I’m afraid of more than I like to admit, but I’m working hard to be less afraid.
  2. Finding Doctors – I’ve had a difficult time finding doctors that treat Meniere’s Disease.  Even if they say they do, they often have little knowledge of the disease.  It’s also difficult to find a doctor who knows a lot about migraines.  It has been difficult to find good doctors to treat me.  In each field I’ve felt I’ve found a good doctor, only to be hit with the “I can’t do anything else” line soon.  It is a definite challenge to find a good doctor.
  3. Freedom taken away – Isolation, is a big challenge.  Since I can’t drive, I have to depend on my husband to get me out of the house, this is a difficult thing sometimes.  He works hard and when he is at home sometimes he has things to do here, or he just wants to relax, he doesn’t need to be taking me out all the time.  Plus I have to get over my fear of having vertigo in public before I can go out at all.   My freedom isn’t just taken away because I can’t go out, it’s also taken away at home.  Because of my illness doing certain things are not only difficult, they can be dangerous.  I can no longer cook because it’s dangerous.  I can’t take a bath or shower by myself, because it’s too dangerous.  It’s very hard for me to do any housework, sometimes because of the danger, sometimes because of the fatigue.
  4. Friends – It is a challenge to keep friends, and to make new friends.  Many of the friends I had before I became ill are not in my life as much now.  (various reasons, but let’s face it, I’m a different person.)  Making new friends is a huge challenge.  (I wrote a post about this, Making Friends?.
  5. Food – Food has been a challenge for a long time.  I have had GI (Gastrointestinal) issues for as long as I can remember.  Then I found out that I have Fructose Malabsorption, IBS, and a wheat allergy.  I have a specific diet I must follow so I won’t get sick.  This makes it hard for me to eat out, or to travel.  It’s hard to explain to people, “oh, I’m sorry I can’t eat that lovely meal you prepared”  It used to be hard to explain why I can’t eat wheat, now it’s really hard explaining why I can’t eat onions, apples, and all kinds of things.

5 small victories – list of 5 little, good things that keep you going.

wedding-love

  1. Successful marriage – This isn’t a small thing, this is a HUGE thing, but it’s what helps keep me going.  My husband and I both agree when we think about it we don’t feel that we work hard on our marriage, it’s just something that comes natural, but that isn’t exactly true.  We do work hard, it’s just something we want to do, so it doesn’t seem like work.  When I first started losing my independence it was very hard on our relationship.  I shut him out and he didn’t know how to talk to me.  We decided to see a therapist.  It was there that we learned to communicate again, and we both have a better understanding of how to deal with my illnesses.  If I could give one bit of advice to any couple going through one partner becoming ill, it would be to get a therapist. It might just make your marriage better.  I know mine is.
  2. Days I can deal with vertigo alone – this is a big victory for me.  When I start to have vertigo I panic because I never know how bad it will be.  See number 1 under challenges, and you will know, I’m afraid!  So going through a vertigo attack without help is a huge victory for me.  I’ve done it a few times, where I’ll have vertigo when hubby is at work and I don’t callv him home.  This doesn’t happen often, so this is a small victory, but it’s a big victory really, every time it happens.
  3. Making new friends – I’ve made many new friends on line.  I have a hard time meeting new people in person, but I’ve found that I can meet some wonderful people on line.  I’ve made some wonderful friends through my blog.  I have one friend that I met through my blog about 7 years ago now, our friendship has transcended the blogosphere.  We email, text, and send packages to each other.  We have called each other, but I can’t really talk on the phone.  One day I hope to meet her.  I think this is a pretty big victory, to go from losing friends to gaining such a deep friendship with someone I’ve never met in person.
  4. Getting out of the house – There are days I can fight through the fear and get out of the house with minimal distress.  When I’m having a good day we can go out and do normal things.  Those times are small victories, they get me through until the next time.  They remind me that I can do it.
  5. Diet – Eating my restrictive diet has made it so I can eat with minimal to no GI distress.  It may be challenging to eat this diet, but I think it’s a small victory, actually a big victory, to be able to eat without GI distress.

 

I wrote a similar post to this one here.

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.

Mindfulness Monday 26 – Happiness

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“If you are a taker of happiness you get misery,
if you are a giver of happiness you get joy and love.”

~Sri Sri

 

“When you discover that all happiness is inside of you,
the wanting and the needing are over,
and LIFE gets very exciting.”

~Byron Katie

 

 

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

#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.