Month: November 2016

11/28/2016

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

challenges.

  1. Getting people to listen

2) getting the time and energy to post, visit etc

3) typing when your fingers are split wide open and bleeding because your due for your next shot of stelara

4)

5)

victories

  1. i learned a few years ago from another advocate (before i started) how to get your doctors full undivided attention.
  2. i now know that i need to be in control of every doctors visit and i know more than the doctor. and i preach this to new patients.
  3. i have made MANY new friends, and i know ill met many more

would ya’ll settle for 3 and 3?

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11/27/2016 Selfie Sunday!

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

its an older pic (about 2 years ago) but i like this pic.

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11/25/2016

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?

I would abolish Step-Therapy. This horrible practice wastes more time and energy and causes people to think they will never be better.

First the doctors must prescribe creams, after awhile when the patients complains, the doctor then moves them onto light therapy. if that fails back to creams. Now when the patient complains again. Ok thats crap. and why is it done? So the insurance companies dont have to spend the money.

A doctor should be able to say, here is (cream/light/pill/biologic) depending on severity etc.

You can read more about it here

Here in NY State we have passed the bill through and waiting for the Governor to sign it. Its been on his desk for months now, feels more like years.

You can read more here as well.

Enter the holiday giveaway from Chronic Illness Bloggers!!!

This giveaway is sponsored by Chronic Illness Bloggers.

 

You can enter HERE!!

 

The giveaway will run from Nov. 23 – Dec 3, 2016.

There are 11 Prize Packs, each with a value between $400 and $600. 2 of the Prize Packs are

available only to US-based winners only.

 

 

Prizes are HERE!

 

11/24/2016 3images

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

Growing up i never liked working on cars or things that made me dirty. I MUST be clean. It was probably some sort of OCD as to this day i wash my hands even after taking out the garbage. Yes the handle on the bag isnt dirty and im reminded of that but i must wash. I was told by many a girlfriend how soft my hands were. Now theyre cracked, splitting and crooked, thanks to Psoriasis, and Psoriatic Arthritis.

Next is a pic of myself and Todd Bello, another advocate for the National Psoriasis Foundation. When i signed up , Todd became my mentor, and through talking to him he thought i would make a good mentor. Now, we do alot of advocating together.

Next pic is myself and Dr Nossa. Here is is giving me my quarterly shot of Stelara. Since my Psoriasis is on my hands and light therapy was ineffective, the only other option is creams, i cant use a keyboard or carry computers around with slimy sticky creams all over. Plus over time steroids destroy the skin. As soon as i realized i also had Psoriatic Arthritis i made sure to get on Stelara. I believe thats why i can still walk today. Psoriatic Arthritis is VERY aggressive, destroys joints, and bones etc.I have met people that in a period of only 5 years they couldnt get around without a cane, lost jobs etc. Thats why i find it so important to treat it aggressively, and a huge reason why i advocate. If it wasnt for me speaking about it, would you know about Psoriasis or Psoriatic Arthritis at all?

11/23/2016 Say WHAT?! wednesday!

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?

Being 1 in 7.5 million americans or roughly 3% of the worlds Psoriasis Psufferers, my disease never used to get the publicity that it should. On top of that MOST of us hide our Psoriasis so people never see it. Ever seen that person on the beach wearing long pants and a long sleeve shirt? Yep, ill bet they have Psoriasis. So MANY people have never seen it. They wouldnt know what it looks like, feels like etc. So WHY would they look it up? Thats right. They dont. So i gotta hand it to you, here it is.

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Thats not bad very mild there. So i put out my hand to collect some change after buying a coffee and the girl looks horrified and throws the money at me.

They ask if its contagious. Dont want us in their pools, “Oh god forbid, my child gets that”

Yea its not catchy, unless you share my genes, unfortunately my daughter picked up that lucky gene and has Lupus. Another wonderful Autoimmune system malfunction. Lovely huh?

Then you get the people that think they can heal that. Oh you cant eat this, or that. Put some bleach on it. Softens the skin right up. Yes i could really see that (rolls eyes) ever had gasoline in a cut? Im pretty sure bleach would feel about the same. Spray this on it spray that on it. No thanks. Ill see my awesome Dr, Dr Robert Nossa. If HE tells me something, ill try it. You can read more about him here

 

11/22/2016 tip tuesday!

Tip Tuesday! Have you mastered the hashtag? Figured out the Instagram algorithm? Or maybe you have a few tips to increase your blog followers. Whatever it is, share your expertise with your fellow HA’s- it’ll only make our community stronger!

master the hashtag? umm #NO i do know that you must keep it short and to the point.

#longrunonhashtagsthatseemtohavenomeaningnorendaretypicallyoverlooked

#PsOfamily is my PsOriatic brothers and sisters, thats a good one keep it short. What else would you like to know? On twitter, follow people with meaning people that you WANT information from, tweet 2x/day dont flood twitter with useless crap, noone wants to weed thru it. i follow people and check their posts. if they start retweeting fake news stories etc, i dump them. i dont have time for that. post REAL stories, real news from reliable sources, it takes time but people will eventually follow you. i follow someone who has MANY followers and she posts GREAT content. i retweeted a few things of hers she retweeted a few things of mine and WHAM! overnight i picked up 20+ followers. they liked my content too! thats all it takes.

11/21/2016 lifes slogan

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

i dont really have a slogan but i just do it. every day on earth is to be cherished as if its your last, because it very well could be. its sad, but true, so just, go!

seriously i love going to work, love my job, love the people i work with so i just get up and go everyday. even if i have to fight my way out of bed, i absolutely hate staying home sick. if im home for something then its different.

Have a beautiful day!

11/20/2016

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?

i think the high point is being chosen to help the pharmaceuticals, whether its opinions on a new website, new smartphone app, new product, whatever. being asked my personal opinions on what i like/dislike on a new website, or being handed a can of medicine (even though its a placebo) and being asked to check it out, seeing my thoughts come out on the finished product is really gratifying.

being invited to events like HealthEvoices.com are also SUPER exciting.

11/19/2016 bad day?

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.

When i am having a bad day i may go sit somewhere and listen to some soft rock of the 80’s, take a nap (if its the weekend) or a work day, just grin and bear it. Being a spoonie ive learn to turn my head or cover my face so people dont see me biting my tongue in pain, dont see that tear cause its just too much. People do however notice when im limping, and thats when i need a pill.