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FDA It's Just A Bad Day National Psoriasis Foundation PsA

Psoriasis FDA Meeting

After screen grabbing my FDA testimony from the hearing held on stem cells, I went back to the Patient-Focused Drug Development for Psoriasis (held by the FDA on March 17th, 2017) to grab a video of my public comment.

The quality isn’t the greatest, but you can hear what I said!

I just realized I never wrote up a post on how it went! I talk about it briefly in my stem cell FDA post (click here to read about it).

But if you’d like to know more, here’s a recap of the meeting from the NPF. Definitely make sure to check it out and watch this brief video!

 

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

 

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Autoimmune Medication National Psoriasis Foundation Otezla Personal Victories PsA

Show More Of You

Oh the Olympics.

Growing up, I remember watching swim meets, gymnastic competitions and figure skating routines with my Mom. But, if I’m honest, I can’t say I was ever fully into the Olympics. They were entertaining for the moment, but they came and went and were just a small blip on my radar.

That is until London 2012.

Summer 2012 set up - stim machine on leg, propped up on the love seat, watching the London 2012 Olympics. If only I had a pic of my brother laying on the couch!
Summer 2012 set up – stim machine on my leg, propped up on the love seat, watching the London 2012 Olympics. If only I had a pic of my brother laying on the couch watching them with me!

I found myself on short-term disability leave and had the time to sit and watch the games for hours on end.

That summer, my high school aged brother and I watched a lot of the Olympics together. I remember laying on the love seat, with my stim machine on my leg, while G laid on the couch.

We watched Michael Phelps win gold medals, Usain Bolt run like lightning, the Fab Five tear it up . . . and I mean, who can forget the Spice Girls reunion? (Obviously I cannot.)

I remember loving the Olympics and being bummed that I probably wouldn’t have time to watch so much of them in the future.

At that time, I still had hope that I’d be back to work in a relatively short time period. The whole psoriatic arthritis, aka chronic illness, thing hadn’t truly come to light yet.

2 short years later, I found myself watching the opening of the 2014 Sochi Winter Olympics. By then, I had officially switched over to long-term disability and I still had the time to watch them! It was bitter-sweet.

As I sat watching the 2016 Rio Olympic Opening Ceremonies a few weeks back, I was flooded with memories and emotions.

Highs and lows from the past 4 years, lots of pain, lots of fatigue, lots of medications, lots of treatments. . . lots of stuff.

But I’ll tell you this, the past 4 years have completely changed me.

They’ve changed my daily routine and life norms, they’ve changed the people and things around me and they’ve changed my outlook on life. You could even argue that perhaps they haven’t changed me, but pushed me to be the person I was meant to be.

The past 4 years have given me never-ending obstacles and challenges to face, but they’ve also brought opportunities and chances of a life time.

When I think about how this journey all started 4 years ago – surgeries, pain and the Olympics come to mind.

So how crazy is it that 4 years later, I had the chance to talk with Dara Torres, five time Olympian and 12-time Olympic medalist, about her psoriatic disease?

I mean, you can’t even make this stuff up people? You just can’t.

 

Show More Of You

Fresh off of her trip from Rio, Dara took some time to chat about her psoriasis and the Show More Of You Campaign.

SHOW MORE OF YOU aims to inspire people living with psoriasis to raise awareness about their condition and celebrate their accomplishments. Celgene, the makers of Otezla (apremilast), has teamed up with Olympic swimmer and author Dara Torres to dive in and help. Join us in celebrating the accomplishments people living with psoriasis achieve every day, and share how you show more of you.

Take a few moments and watch this interview I had the chance to conduct with Dara Torres and Dermatologist Dr. Cather about Celgene’s Show More Of You Campaign.

 

I invite you to head over to Show More Of You, check it out (let’s be honest, you at least have to go look at my pictures I submitted) and then submit your own pictures!

As the 2016 Rio Summer Olympics come to a close today, I can add even more {positive!} memories to my Summer Olympics collection.

August is Psoriasis Awareness Month, but awareness for psoriatic disease doesn’t have to just occur now.

Let’s continue to spread awareness, and MOST IMPORTANTLY our stories, all year long.

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

 

 

 

 

Show More Of You - Dara Torres & Celgene Interview | Julie Cerrone, Holistic Health Coach + Yoga Instructor + Patient Empowerer + Autoimmune Warrior (Psoriatic Arthritis) itsjustabadday.com

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It's Just A Bad Day National Psoriasis Foundation PsA

Psoriatic Arthritis Patient, Be Counted!

If you’re a psoriatic arthritis patient, you already know how unfamiliar people are with the disease.

I mean, I’m pretty sure there are people in my life who still don’t understand what it is.

Psoriatic Arthritis (PsA): Get the Facts Be Counted Initiative! | itsjustabadday.com Spoon & Autoimmune Warrior Certified Holistic Health Coach Julie Cerrone juliecerrone.com

There are more than a million people in the USA alone diagnosed with the disease, but who knows how many others there are who aren’t diagnosed. There is no specific blood test that shows PsA, there is no scan that can accurately tell you you have PsA – it truly is putting together the pieces of the puzzle and coming to the right diagnosis.

The prevalence of PsA in the US is greater than that of the more well-known conditions multiple sclerosis, Lyme disease, and amyotrophic lateral sclerosis (ALS) combined. Yet, so many don’t understand what it is.

Psoriatic Arthritis (PsA): Get the Facts Be Counted Initiative! | itsjustabadday.com Spoon & Autoimmune Warrior Certified Holistic Health Coach Julie Cerrone juliecerrone.com
The Be Counted initiative is helping to spread awareness of what Psoriatic Arthritis is and how it affects patients. When you visit the website, you’ll see there are 3 videos to watch. When you watch them, the map below it updates with the location of where you’re watching it. The more we spread the site, and the more we spread the videos, the more awareness will be spread and the map will reflect that!

HOW COOL IS THAT?!

I had a chance to speak with Dr. Faller and Lisa (one of the beautiful patients in the videos on the site) and ask them a few questions. Check out our interview here:

http://bcove.me/zhu4o5ws

 

Spreading awareness is SO important. 

Think about it . . . whenever you see a pink ribbon, you immediately think Breast Cancer because there is SO MUCH AWARENESS around it.

Psoriatic Arthritis (PsA): Get the Facts Be Counted Initiative! | itsjustabadday.com Spoon & Autoimmune Warrior Certified Holistic Health Coach Julie Cerrone juliecerrone.com

Let’s help spread the awareness of psoriatic arthritis.

Let’s help others know about the disease and how it impacts us.

Let’s help others get the information they need that may end up helping them get a diagnosis.

Psoriatic Arthritis Counts!

So let’s all join the Movement to Learn More About Psoriatic Arthritis (PsA) 
and Show Our Support for the Community!!!!

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

 

 

 

 

MAKE SURE TO SHARE THIS POST AND THE BE COUNTED INITIATIVE!
Pin this image, share the video or tweet our thoughts!

Did You Know How Prevalent Psoriatic Arthritis Is? Learn more about how Psoriatic Arthritis Patients Count! Psoriatic Arthritis (PsA): Get the Facts Be Counted Initiative! | itsjustabadday.com Spoon & Autoimmune Warrior Certified Holistic Health Coach Julie Cerrone juliecerrone.com

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It's Just A Bad Day National Psoriasis Foundation PsA

LaLa Anthony & NPF’s Picture Positivity

My 23-year-old self (ok, let’s be honest, and my 30-year-old self) was freaking out when I had the opportunity to speak one on one with La La Anthony! Sure, it was in regards to her psoriasis and her new Picture Positivity campaign with the NPF, but AHHH! I WAS PUMPED!

After graduating from college, I worked for an IT consulting company. I enjoyed my time there and I did like the work, but it was very stressful, very demanding and I often found myself dreaming of what was in store for me. A coworker and I always gossiped about reality tv and found ourselves checking our social media channels a bajillion times a day. (Anything to distract us from the never-ending amount of work haha!)

So many times during my time there, I’d say I wished I could just hang out with reality tv stars and do social media for a living . . . of course, still receiving my IT consulting paycheck! Never in a million years would I have thought that health issues would change my life completely, have me working on social media outlets to help other patients and provide amazing opportunities (like interviewing La La!).

It’s funny how life works out, isn’t it?

 LaLa Anthony & NPF Picture Positivity Campaign

La La & The NPF’s Picture Positivity Campaign

La La has been dealing with psoriasis for 10 years and is now speaking out about the disease and how positivity plays a part in dealing with it! Upon speaking with her, I told her how much of her campaign mirrors my core beliefs. She joked about how we should have partnered for the campaign! {Note: NPF, next time. 😉 I’m available}

With chronic illness, so many of us go through a mourning period. We have to accept our new lives and come to terms with any new limitations that a diagnosis may provide. When I asked if she went through a similar period she talked about how she definitely had moments of “Why me? What did I do to deserve this?” But she went on to explain how it’s SO important to educate yourself. If over 7 million people in this crazy world have psoriasis, you definitely aren’t alone in your battle. Just think of how many other people are out there dealing with the same things that you are!

I loved when she said this. It’s so true, often we think that we’re alone in our battles, but that couldn’t be further from the truth! La La talked about how she hopes the campaign will help psoriatic disease patients “Be positive and remember life goes on.” and to “Replace negative thoughts with positive ones!” Also, the campaign aims at bringing psoriatic disease patients together! So make sure to reach out to one another – Use this as an opportunity to meet others in similar situations.

 

Approaching Psoriatic Disease In A Holistic Way

La La Anthony & NPF Picture Positivity Campaign -New York, NY - 04/30/2015 - Lala Anthony picked<br /> -PICTURED: Lala Anthony<br /> -PHOTO by: Michael Simon/startraksphoto.com<br /> -MS_263049<br /> Editorial - Rights Managed Image - Please contact www.startraksphoto.com for licensing fee<br /> Startraks Photo<br /> New York, NY

Because I truly believe that chronic illness should be approached from a holistic approach (not just looking at the symptoms you’re experiencing, but looking at your body as a whole), I was interested to see what she did to help manage her psoriasis. I always tell my clients it’s important to identify what your inflammation triggers are so that you can help calm down your immune system. La La hasn’t explored food triggers, but what she has noticed is that whenever she’s stressed or excited – when her adrenaline is pumping – she is more apt to flare.

Managing Stress

What does she do to help manage her stress?

“A big, warm cup of tea!” she exclaimed when I asked her!

She went on to explain how she’s an overly hyped up person and taking some moments with a cup of tea can help her calm down and regroup. She loves to channel her energy into boxing too – exercise is a great way to help relieve stress! It was funny to hear her talk about how she has a lot of energy because she definitely seemed like a woman who is down for business. She spoke fast and to the point, but had such a tender, loving energy about her. I’ve decided after our short interview I’d definitely be friends with her. 🙂

Support Network

Support is an extremely important part of managing any disease. La La doesn’t have anyone in her family who has psoriasis, but she went on to mention that a few of her friends have it. She said it’s nice, and brings comfort, to have an open dialogue with her friends about their disease.

I think it’s important to note that support can come from a myriad of places. Social media networks now connect psoriatic disease patients in a way that was unheard of before. The Picture Positivity campaign showcases psoriasis and psoriatic arthritis patients (just like you!) from all over the country. Take this as an opportunity to interact and form relationships. The NPF’s Facebook, Twitter and Talk Psoriasis Boards are also a great way to meet other patients!

Fitting Into YOUR Life

One thing I truly believe is that each and every one of us is SO different. Therefore, how can there be a one diet fits all or one remedy/trick/tip that cures all!? And La La definitely understands this. I asked her if she had any tips on managing her disease or if she’s received any great advice from her friends. “When I’m flaring I’ll wear my hair slicked back in a bun, or if it’s on my arms I’ll wear long sleeves or long pants if it’s on my legs.” La La understands that each of us needs to figure out what works for US in OUR life.

That’s definitely a core concept I always work with people on. That each of us needs something different and guess what – you may not believe me- but your body totally knows what it needs to heal. You just need to relax, listen and then take the steps that it’s telling you to take.

Keeping A Positive Mindset

Flipping through instagram pictures or tabloid photos, you may think the grass is greener on the other side of the fence. Remember that autoimmunity can affect everyone! Just because you see a beautiful picture of La La, CariDee English, LeAnn Rimes, Stacy London, or La La’s friend Kim Kardashian, doesn’t mean that they still don’t have struggle of their own. Many of the same struggles psoriasis patients deal with on a daily basis are happening to these beautiful woman as well!

It’s easy to fall into negative thought patterns about ourselves and our disease when we think others may have it easier. The true test of chronic conditions is how you thrive when those negative thoughts creep in. Let’s face it, we all get them! La La and the NPF’s Picture Positivity campaign can help turn your negative thoughts into positive ones.

La La encourages us all to head over to Picture Positivity and upload our own photos of how we’re not allowing psoriatic disease to stop us! She hopes that you’ll see how others are still living amazing lives and how you don’t need to be embarrassed about your condition. This campaign is meant to help empower each and every psoriatic disease patient to realize their worth, realize they’re still very capable and realize that living a positive life IS possible despite psoriatic disease.

Ironically, as I’m typing this up I’m using a mouse pad that has Kim Kardashian on it (No, I’m not ashamed to admit it). Whenever I left my project my coworkers gifted it to me as a parting gift. How funny is it now, a few years later, that I’m typing up my blog post I’m using this Kim Kardashian mouse pad.

Never give up, because you never know how life will turn out.
Don’t let a chronic condition hold you back from embracing everything your beautiful self is capable of doing!
Have faith, trust in what will be and try your best to focus on the positives in your situation.
Sure, it may be hard, but we only get one life. . . So make it the best damn life you can 😉

Remember to head over to the Picture Positivity campaign and upload your own photos today!!!!!

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

 

 

 


Want some more resources to help amp up your positivity?

Check out these past posts:

3 Tips For When You Feel Like Giving Up

You Talk Like You Were Once Great

Miracles, Love And YOU!

How Positive Thinking & Connections Heal Your Body

Which Definition of Formidable Will You Choose?

Are you ready to live your best life? Health Coaching Banner | Julie Cerrone, Holistic Health Coach, Spoonie, Autoimmune Warrior, Psoriatic Arthritis, Complex Regional Pain Syndrome, Avascular Necrosis, Melanoma, Depression, Anxiety | itsjustabadday.com & juliecerrone.com

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Autoimmune National Psoriasis Foundation PsA

NPF Conference : Even One Person Can Make A Difference

From December 2012 – August 2013 I definitely experienced some of the darkest days of my life. I had to spend the majority of my time in bed because I was so inflamed, my body was so angry at me, and I was in so much pain.  I couldn’t put any weight on my left leg at all so it made doing ANYTHING beyond exhausting. Not to mention the ridiculous anxiety and depression I was battling. It was really hard on me because not many people in my life understood what I was going through. I had moved back into my parents house full time, was sleeping in a bed in our basement and rarely left said basement because steps were just way too difficult. (Don’t worry, we have a super nice basement and basically have everything I could ever need down there!) I was moody, angry, sad, restless, and pretty much hating every aspect of life. Want to read some older posts about this time? Here are a few: 2012 The Beginning of this Madness, A Couch Ridden Football Season, A Dead What??… just to name a FEW

 

My computer and iPad really became my window to the outside world. As all my friends and family kept moving forward with their lives, I was stuck in one place and I really felt Iike I was digressing in life. Learning about the whole #spoonie community on Twitter and social media, I started to become very motivated and inspired by my peers in similar situations. It was through research and talking to these amazing patients that I started to dig myself out of the hole I had retreated into.

 

I was on vacation in Clearwater, Florida that July and was working through Lissa Rankin’s Mind Over Medicine book. It was during this trip (the trip where the picture that is my blog’s header was taken) that I decided to start my own blog to help others just as the amazing patients before me had done. I wanted to get my story out there, I wanted to get the resources and courses of treatments that I tried out there for others, I wanted to help others just as the ones who were already blogging were doing for me.

 

When I worked in IT, I always would tell my coworkers how much I wished I had a job in social media. I would pursue the job postings, but ultimately never acted upon them because the going rate was less than half of my salary. Being forced out on disability and deciding to get my story out there for the world to read, really brought my two interests into one. I started my blog and as time went on I really began to find my voice and audience.

 

My blog has brought me opportunities that never in a million years would I have thought about. I’ve partnered with amazing foundations and companies to help get the patient voice out there and I feel so passionate and alive when I’m doing this work.

 

About a year ago, Noe Baker from the National Psoriasis Foundation reached out to me to let me know that she was starting a blogger program at the NPF and really liked what I was doing. Noe is an amazing individual and over the past year has given me AWESOME opportunities to help other patients of psoriatic disease. The best thing she’s done for me though is she’s brought some of the most amazing people into my life who I’m so blessed and honored to call friends now. Friends who work for the NPF and friends who are thriving with psoriatic disease.

 

If Noe would have never reached out to me, if I would have never started my blog, if I had never endured some of the hardest and most painful moments of my life, I wouldn’t be where I am today. As I sat at the NPF Volunteer Conference and heard about all the amazing research and the amazing advocacy that is going on in this space, I was awestruck. When we think about the world, it can seem so big. That there’s no way that little old me or you could make a difference, but you know what… We can. The volunteers at this conference are just one person, but are doing extraordinary things to help raise awareness and support for others. The researchers at this conference are just one person, but may be an integral part of finding a key to start unlocking the mysteries of psoriatic disease (and all autoimmune disease to be honest!)

 

I learned a lot at this conference, but one of the most important things I learned from the NPF NVC 2015 was that we all have a voice and we can use that voice for good, we can use that voice for bad or we can keep our voice silent. I’m so proud of the work that the NPF is doing and helping fund and I’m SO proud of the ridiculously inspiring work my volunteer friends are doing.

 

I’m sure you’ll hear a lot more about the NPF NVC in many up coming posts, but I urge you to check out some of my friends blog posts about the conference. I love seeing other people’s perspectives of how they viewed the conference. There was some great content, fascinating research and way more than ‘surface level’ networking done during those 3 days.

NPF 2105 Volunteer Conference - Finding Your Digital Voice WorkshopMy #PsoFamily
Lori-Ann Holbrook “City Girl Flare”
Jamie Lyn Moy “A Pspot of Hope”
Alisha Bridges “Being Me In My Own Skin”
Todd Bello “Psoriasis Campaign For A Cure”
Brittany Ineson “Seeing Pspots”
Sabrina Skiles “Homegrown Houston”
Jim Snedden “A Wild & Flaky Guy”
Any conference that brings patients, researchers, doctors and top experts in the field together gets a billion, trillion, zillion thumbs up from me!

How can the NPF help you or how can you get involved?

They have so many activities and programs. Seriously, I can’t list them all because this post would be super, duper long. But here are 3 things that I’m very active in.

 

One To One Mentoring Program

I’m happy to say that I’m a mentor in this is program. Any psoriatic disease patient, newly diagnosed or not, can reach out to a list of amazing mentors to have someone to speak one on one with. There is a list of mentors and bios you can read through for you to decide who you’d like to talk with. The wonderful thing is we’re all unique and have had very different journeys – there’s someone for everyone! Check it out here 🙂

Also, check out their Talk Psoriasis boards! There’s so much discussion that goes on over there.

 

NPF 2105 Volunteer Conference Advocacy

There are SO many ways that you can help advocate for patient care and psoriatic disease. In years past things were more narrowly focused, but lately there’s really a push to help ALL patients. The NPF has partnered with many other patient foundations and has the same stance on many of the initiatives. For instance, I help advocate for the Arthritis Foundation as well. Every time I’ve done an AF event or a NPF event we’ve advocated for similar, if not the same, bills, policies, etc.

Not sure how to get started in advocacy? There’s a whole toolkit for that!!! Check it out here.

 

Social Media

The NPF has some pretty awesome people working on their social media platforms to help current patients, to help future patients and to help spread awareness. Check out their Facebook, Twitter and blog.

Annnnddddd they do some pretty cool stuff….

I’ve made a little video for their next activity that’s coming up for the month of August. August is psoriatic disease month and the NPF is hosting a 31 day wellness challenge. Since I’m not only a holistic health coach, but also a psoriatic arthritis patient, I’m going to be helping the NPF during this fun challenge and blogging on their NPF blog! Check out this video for some more details 😉

 

So recap:

– YOU can make a difference, you really can.

– Check out my #PsoFamily’s blogs

– Follow NPF on social media, check out their programs and get involved! Facebook, Twitter and blog.

 

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

Categories
Arthritis Foundation It's Just A Bad Day Mind Body Connection National Psoriasis Foundation

Honor The Crazy Life Journey You’re On!

The following is a blog post that I started as part of a social media blogging summit I had the amazing opportunity to go to this past weekend. The National Psoriasis Foundation and Leo Pharmacy put on a wonderful event for prominent psoriasic disease bloggers. I love being able to get together with my psoFamily! Can’t wait til July when we can all hang out together and have a blasty blast in San Fran! Whoop whoop!!

During the workshop, we had a writer’s block writing exercise where we explored many different ways to create content. After which we were given some time to start crafting a post. The following is my brain vomit from that exercise, followed by the posts of some of the awesome people who were in attendance.

A HUGE THANK YOU to the NPF and LEO for having me at the event. I learned a lot, really felt like my voice was heard and truly believe that LEO is patient focused and is moving towards a patient centric approach. Music to my ears 🙂 🙂 🙂

Additionally, a HUGE THANK YOU to the Arthritis Foundation for hosting such a great State Advocacy Day. A lot of work went into putting the day on and patients everywhere very much appreciate what you do!


NYC. South Street Seaport. I think about the 2 hour “all you can drink” brunches that I used to have with friends, eating greasy foods and playing board games at a local restaurant about a block away from where I’m currently sitting. I can’t help but wonder if that food had anything to do with why I’m sitting here now?

The National Psoriasis Foundation has given me SO many amazing opportunities within the last year to help expand my social media skills and my knowledge of psoriatic disease. Today’s activities are no different. Back when I was in IT consulting, I used to tell my boss all the time that I wished my job focused on social media. That THAT’S where my passion was. I remember I’d leave work and search for social media positions to apply to, but always became discouraged because the going rate for a social media consultant was SIGNIFICANTLY less than that of an Systems Integration Consultant. I knew in time I’d figure out what I wanted to do, and where life would take me, but at the time I didn’t know exactly where that was.

If I think back even further, I applied to college as pre-biology with the intent of going to medical school after undergrad. I had grown up in doctors offices and physical therapists gyms, so it seemed like a likely fit for me. After spending my first semester in that space, I ended up switching to the business school and eventually graduating with a management information systems degree. I’ll be honest, I had NO idea what I wanted to do and figured a degree in business and computers could get my foot in the door at a lot of different places.

As I sit here now, surrounded by 10 other bloggers, LEO pharma staff and some awesome social media gurus at WCG, I now know that I wasn’t completely misguided when I would make social media comments way back when or how I knew that my heart was into health. It’s like my inner self knew that’s where my passion and interests lay, but my journey had not progressed enough yet for me to fully immerse myself in that world. We all have very unique journeys and sometimes we have to take the out-of-the-way, down the back road, make 50 wrong turns and backtrack, route.

Earlier in the week, I had the opportunity to travel to Harrisburg, PA with the Arthritis Foundation for their State Advocacy Day. I attended for the first time last year and was just as excited to go back this year! I never thought I’d find myself sitting with State Reps and Senators advocating for other patients just like me. (Check back Wednesday to learn more about some hot initiatives we were talking about!)

Helping advocate for the patients that I get to interact with on social media platforms everyday, and the patients that I’ll never meet, is so exhilarating! Being able to share MY story with government officials is an opportunity I’m extremely grateful to have. Sure, if I had to choose whether or not to be afflicted by some of my health issues would I choose not to have them? Absolutely! But as Robin Roberts says, make your mess your message!

This week’s trips to Harrisburg and NYC, have not only exhausted me, but really have meant a lot to me. They’ve reaffirmed to myself that I’m FINALLY following my intuition and my true life’s purpose. When I left Pittsburgh yesterday, I left with only one crutch, rolling my suitcase all by myself. For the past 3 years, I’ve always had to have someone accompany me to the airport in order to drop me off at the door and to roll my bags in for me. NOT THIS TRIP! This trip has been the first time in 3 years I’ve been able to do it all myself. Now, I still asked for a wheelchair from baggage claim to my gate, but hey! I’m not going to expel my energy on something as silly as that.

When I started packing for this trip I got a bit discouraged. The last time I had flown I had told my cab driver that it was probably my last trip with crutches. That, however, did not seem to be the case. This trip I was still lugging my good old crutches (I feel like they should have a name or something at this point?) and I started feeling a bit down. It wasn’t until I started thinking – Holy cow Jul! Look at the progress you’re making by driving yourself to the airport! Sure, someone still helped you carry your bag up the steps so you could get it into your car, but you’ll be rolling your own bag, into the airport, by yourself, just like you used to do 3 years ago.

 

Growing up, I lived a very dependent life, like we all do. Leaving for college I began to grow my independence and post-college I became fully independent. Having to take a step back to becoming dependent again, the last few years has been rough. BUT, it’s been part of my journey. The journey who’s choices and twists and turns have led me to be sitting in the amazing company of some brilliant minds.

Life is ever evolving and can seem extremely daunting at times. BUT! If we have faith in our future, hope that everything will turn out right and the courage to persevere, we can get through any tough (or easy!) time. If you look at where you are right now with doubt, sadness and a hopeless heart, I urge you to take a step back and look big picture. And just remember – right when the Caterpillar thought his life was over, he became a beautiful butterfly. Believe that everything will work out in the end and if it hasn’t worked out yet, then it’s not the end 🙂
Trust The Process. Sometimes we have to get on the wrong bus, headed in the wrong direction, before we get to our destination.|PSO Blogger NPF & Leo Pharma Social Media Summit | itsjustabadday.com juliecerrone.com Spoonie Holistic Health CoachI’m not exactly sure where my career will take me. I love health coaching, I love social media, I love health care, I love IT and I also like to buy a lot of things… so I’m really curious to see where I end up in the next year or two. But one thing is for certain… right now I can honestly say the universe seems to be flowing in my favor. Opportunities (just like the one I’m sitting at today!) seem to keep coming to me and guiding me to hone in on certain skills. When we start to listen to ourselves, our bodies, our inner guides aka intuition, life can start to seem a whole heck of a lot easier. I wake up everyday excited and energized to ‘do me’. I don’t have to put on an outfit and pretend to be someone I’m not or do something I’d rather not be doing. I always knew that my inner guide was nudging me along to do something social media, something health related, but I couldn’t have realized my full potential had I not gone the path that I did.

 

So I challenge you this.
Take a look at where you are in your life.
Are you listening to your heart?
Are you ignoring the signs your body or the universe may be giving you?
Sure, you may not have all the answers at this moment, but just like in the game of clue you should write them down! Once all the clues comes together, you’ll be able to then solve the mystery.

 

Wishing You A Pain Free Day!

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Make sure to check out my #Pso Family!

Alisha Bridges: Being Me in My Own Skin (Twitter: @AlishaMBridges)

Joni Reece: Just a Girl with Spots (Twitter: @GirlWithSpots)

Lori-Ann Holbrook: City Girl Flare (Twitter: @CityGirlFlare)

Sabrina Skiles: Homegrown Houston (Twitter: @SabrinaDSkiles)

Brittany Ineson: Seeing Pspots (Twitter: @BrittanyIneson)

Jamie Moy  A Spot of Hope (Twitter: @JaimeLynMoy)

Todd Bello: Overcoming Psoriasis (Twitter: @tvsoccerdad)

 

 

 

NOTE: I attended a Psoriasis Blogger Summit hosted by LEO and received a stipend for my evaluation and feedback on information presented during the meeting. All opinions expressed by me about the summit or LEO programs or products are my own.

Categories
It's Just A Bad Day Medical Conference Mental Health Mind Body Connection National Psoriasis Foundation Wellness Wednesday

Bittersweetness

Last week I had the amazing opportunity to attend a social media summit sponsored by Celgene. They so graciously invested in me, to help build up my medical knowledge around psoriasis and psoriatic arthritis and even had one of the co-founders of blogHer give a presentation on increasing social media presence.

As many of you know, the year prior to going out on disability I was living in Manhattan. Or more so playing in Manhattan haha! After my lease was up I had decided to move back to Pittsburgh because of a variety of reasons. At the time I really questioned if I was doing the right thing, but the universe definitely was guiding me in the right direction. Very shortly after, my leg blew up, I was in surgery and out on disability aka relying on my family for everything.

One of my roommates in NYC, he was a great friend from high school, had an ACL surgery last year. If you’ve had the procedure done you know that it can be a challenging recovery. Add in the stress of crutching around NYC for everything into the mix!!! *whew* I give him so much respect for making it through that. And I have so much respect for the thousands of individuals who do it everyday in the big apple. While I was there, I loved loved loveeedddd the fact I didn’t need a car – that I could get everywhere and anywhere quickly and easily. That becomes an extreme disadvantage the moment you can’t walk.

Day-1-e1398278567835Where I stayed in SoHo was about 2 blocks away from where my favorite store is located. I was so excited to go and buy a few new things for my winter wardrobe. (I mean out of all of Manhattan what are the chances I’d be THAT close? How could I not go??) The social media summit was held one block over, the opposite direction, of the hotel at the New York Genome Center. It was very easy getting there in the morning and I had a great day. On my way down the elevator that morning I actually started talking with a man who ended up being one of the participants of the summit! (You can find him at Psoriasis Campaign for a Cure!)

The day was absolutely wonderful, definitely spurring off a few different blog posts from information covered during the sessions (stay tuned!). After we were done I knew I wanted to go and hit up the store before meeting up with a friend for dinner. I was loosing steam, but I knew if I powered through it I could make it.

Crutching down the city blocks was most definitely a different experience than walking. Usually I would get irritated stuck behind a slow moving person in the crowd, but during this walk I actually welcomed it! Luckily it was a Tuesday night and NOT the weekend, so it was busy, but not ‘Saturday afternoon’ crowded.

By the time I made it to the store I was pooped. As I looked around, my energy levels dropped so low that trying clothes on became a chore. Usually I wanted everything and anything in the store, but I only grabbed about 5 things to try on. As I stood in the dressing room, trying on an adorable top, I couldn’t help but think ‘this blows‘. I was used to getting up on a Saturday morning, walking miles and miles during the day shopping, exploring the city, trying new foods and then going out at night with friends. How could walking, or crutching rather, the few blocks over to Broadway tire me out so much that I didn’t even want to try on all the cute clothes at this store?

What was going on in my life? What had my life become?

Can any of you relate to this? After our immune system becomes overactive, our active lifestyles tend to decrease. Sure, after walking all those miles my knees would be sore, my feet would hurt, or I’d need a nap, but come on – when could I NOT try on clothes? (I’m always up for shopping haha)

After I checked out and began to crutch back to home base, I took a different way, walking down a street that I used to love to check out the little restaurants and cafes. I think SoHo is one of the cutest places in the city. On the weekends, the SoHo section of Broadway is crazy busy with tourists and locals shopping. But that evening, walking down Spring and Thompson, the weather was perfect, it wasn’t too crowded and everyone seemed to be in a great mood. I took a deep breath and soaked it all in. In THAT moment everything was perfect, maybe not so much a few moments before, but in that moment I was in the SoHo I loved. I was enjoying my time being there. I was loving life.

gabbytweet44Life is about being in the moment. Sure, comparing this trip to my routine walks through SoHo a few years back was like comparing apples and oranges, but in that moment there was nothing else I needed. There are so many times within chronic illness we become lost in our thoughts and our thoughts begin to poison our bodies. By focusing on what I DID do and not what I DID NOT do, it helped me to be happy and excited about my trip.

And of course, no big surprise, but I didn’t want to go home haha (do I ever?) I swear I could just travel the world for the rest of my life and be happy.

This wellness Wednesday, I want you to focus on the here and now.

NOT where you were last year this time.

NOT what you used to do before you were ‘sick’.

But, focus on what you’re doing now.

Focus on the small miracles that occur in your life everyday. (because they do happen! everyday!

“Throughout my journey of spiritual growth, one message from A Course In Miracles that always resonated with me deeply was ‘Only the mind decides on what it would receive and give.’ This point reminds me that in any given situation I have the choice to perceive love or to perceive fear. Through the daily practice of choosing love over fear, eventually love became an involuntary response. Of course, my fearful ego sneaks up on me often, but through perseverance, the loving voice now speaks louder.Gabrielle Bernstein #MiraclesNow

Today I’d like to ask that you repeat a mantra that Gabby gives in her book to help practice the principle of choosing peace and affirming your commitment to miracles: I choose to see peace instead of this.

Eager to see how this affirmation plays out in your life. Leave comments on how it goes 🙂

Wishing You A Pain Free Day!

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