Tag: #HAWMC

11-5-2016 Superpower Sunday! If you had a superpower – what would it be? How would you use it?

HA! this is an easy one!  My superpower would be the ability to cure all diseases. i would cure your psoasis, psoriatic arthritis, crps pcos, migraines, lupus, ibd, diabetes, hiv whatever.

11-5-2016 r u 180 characters or less?

Todays post:

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

Ok… i love twitter.short bursts, like txt messages, quick easy and gets the word out.

I also LOVE taking pictures. All kinds of pictures. My dogs sleeping, begging for food, looking at me, sleeping. pictures of clouds, flowers, animals, people. you name it.

Facebook? Nah. Instagram? maybe. WordPress, im getting there, but i still love twitter. when i need to ramble on about something it will be right here in these pages. BUT if i want to share something right here right now, twitter. there maybe a photo, maybe a link, or just a retweet, but its something i needed to share, whether its pertinent to my diseases or other ones, it something that needs to be spread, and i am happy to do so.

 

11-4-2016 The day i was diagnosed….

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.

Wow. the 1st time i was diagnosed in 2007 the doctor said it looks like psoriasis but this wasnt formal as he took a biopsy to check. i had a lot of job issues then and went through a few jobs before finally landing at the dressbarns home office in July 2009. at this point i went to see another doctor, as i thought i needed another opinion. i mean this should be gone right? I mean its a rash.
I asked the doctor just this and she said, “The other doctor said it looked like Psoriasis and i agree with that” now what came next i heard as “YOU WILL NEVER BE CLEAR!” but that wasn’t her it was my brain translating and what not. i walked out and googled. yep image search (please dont do this) at that point i felt ill, i cried, my life had been changed forever. Every woman that i ever held hands with always told me how soft my hands were. now they will always be like sandpaper, cut cracked, bleeding. Then again the next day trying to shampoo my hair, shampoo has alcohol and ammonia in it and scents etc. Imagine taking a razor blade running it thru your palm 6 or 8 times 1 or 2 times almost hitting the bone, then pouring gasoline on it. Thats what shampoo feels like in my hands. Yes i cried again. I wouldn’t wish this disease on my worst enemy.

I must now add that this is also the best thing thats happened in my life. I have met many other advocates, and we have become like a second family. I look forward to events that they will be there, we catch up on all kinds of events and share tips tricks that we have learned. I have become friends with members of Novartis/Janssen/LEO Pharmaceuticals so far. They learn from us better ways to treat/and help their patients. I mean who better to tell you what this disease is all about? You think its a skin condition? You couldn’t be more wrong. Its psychological, painful, debilitating to say a few. Actually someone just took her own life because of this horrible disease just yesterday. YES, its that bad.

11-3-2016 – “Do it with passion, or not at all.” — Rosa Nouchette Carey

Day 3. Inspirational quote…

Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

These are definitely words to live by. My first couple jobs were just that, jobs. Something you did everyday to make money, then leave. I hated getting up. Work was boring, there was no challenge. As time went on i knew my passion was in computers. I went back to school, started working with computers. I loved trying to figure out what was wrong, why this didnt work right, etc. I started programming, tok a deep dive there OMG this is great. Started working at the Nasdaq…. At that point, i LIVED for going to work. I LOVED going to work. The same goes today. I LOVE what i do in the office, and i LOVE what i do as a Patient Advocate. There is nothing i want more than to help people.

 

11-2-2016

So lets go Wego post 2!

Every great writer has their own process! What’s the blogging process look like for you? Do you set aside time each week to write or do you wait until the inspiration hits? Do you finish a post in one night or use the week to perfect it? Do you edit your blogs or just hit publish? Whatever it is you do, it’s unique to you and we want to learn about it.

Ok so most of my posts are spontaneous. I get inspired and BOOM! I have to write about it, thats the way its been so far. However i do want to start planning my posts and posting about different thing going on like Health Fairs, National Psoriasis Foundation events like walks etc. YOU, my readers, should let me know what you want to read.

Yes i blurt it all out and publish, sometime i dont even proof read it. Unless im using voice type, cause ive seen some pretty bad stuff there! LOL

11/1/2016

I accepted a challenge from Wego health. So everyday for 1 month you will set a blog post. Today’s challenge is as follows:

Welcome to Day 1 of the November HAWMC! First, 
let’s get to know each other! What drives you to 
write about your health? What do you want other 
Health Activists to know about your condition and 
your activism? Reflect on this for 15-20 minutes 
without stopping…GO!

Hmm what drives me? Well…..
i was first diagnosed with Psoriasis in 2007, the doc said it ‘looks like’. i never really heard you have , so i used the medicine cleared up i was happy. it came back next winter. again i used the medicine, cleared up. it came back next wintr. i saw another doc. She said the other doc said Psoriasis and i agree. i was devastated, i went to work and googled, and clicked image search. OMG! One of the things i found during these searches was the National Psoriasis Foundation. And a mentor, named Todd Bello we spoke a bit and i had found out that there are a lot of answers online but for everything i read theres 2 snake oil salesmen. if i didnt have such great google skills i would be broke in a heartbeat. Over the next year i learned a LOT, then Todd told the foundation i would be a good mentor. I stepped up and accepted. After being a mentor for a couple years The foundation saw how much i was online here there and everwhere, and said i would be good with social media. I helped tweak a website for Novartis before it became public. I helped LeoPharma with apps and products before they became public. Janssen Pharma sent me to Chicago to meet other advocates to step up my game. In doing this i have met other volunteers and became close to them. they are my PsOfamily.
I have had MANY people thank me for advice or a post i made etc. I spread truth not snake oil. I couldnt imagine not posting at all. I want people to know what its like to be me, your mileage my vary. I am ALWAYS open to questions and comments and LOVE to help people. My physical health may keep me from remodeling the house, working on my car, and things like that but it cant stop me from talking and helping people. I cant imagine a day without advocacy of some sort, wether its a tweet, blogpost, repost on facebook etc.
So what drives me? I need to show people the truth. No snakeoil. Your afraid of biologics? Need help? Yes YOU drive me! The 3% of the worlds population, those of us now known as Psoriatics!