Day 30!! #WegoHealth #HAWMC
I’ve made it through this 30 day challenge that started with my first blog post right here on “Life As I Know It.” It is a huge accomplishment and I need to keep the momentum going.
I’m currently in a Rare Artist Competition (vote here). I am hoping for a Merit Award to get to Rare Disease Week, with my painting, in Washington DC. I have applied for a travel scholarship to help me get there with or without my painting. My Voice Will Be Heard. The only ones with a dialogue are pharmaceutical companies (and those they recruit to do their bidding) but it’s their dialogue. I am the one with the disease. The wrong story is being told. All sides of the story need to be told. I’ve discussed “all the parts that make up the whole” in previous posts. Pharmaceutical companies need to hear my voice (and others). They need to recruit from a broad spectrum, not one person representing a whole or choosing the patient(s) that make it into a study. Dirty little secrets out there have revealed themselves. We are all so different. The variety is missing. …Isn’t that the spice of life!
I need a plan to get myself to the Global Genes Conference in California next year. Same reasons as above… And further my knowledge.
I want to make contacts in this rare disease world, raise money and continue my efforts to be able to start a fund for alternative and complimentary care… This may lead to lobbying. This may lead to more conversations or interviews with acromegaly drug, pharmaceutical companies and hospital research teams. I will continue to do as many interviews as possible. My Voice Will Be Heard.
On a smaller level… a more personal level I need to figure out my blog. Starting off the day before this challenge left holes I need to fill. I need to figure out a schedule for writing… how often is good… I need to figure out balance. I want to write about more than acromegaly. This is a lifestyle blog. Yes, rare disease, chronic illness, persons blog but also an artist, designer, tree hugger, organic living, alternative therapy, Paleo eating person’s blog.
But this 30 day challenge… The beginning of the holiday season… Has me run down… so I must reevaluate my self-care. Which must come first… Rest, figure out new pain management protocol, find a new diagnosis, have my jaw broken and get rid of these braces!! It’s a full time job! So I am setting up goals for the year but if I’ve learned anything, it’s roll with it….
Sidenote: I need to clear my mind, name my nonprofit and design a logo. Good thing I’m a graphic designer.