Scleroderma, Sarcoidosis and Skin Care?

All my travel, education and maintenance for The Mighty Turtle, is covered by me.  I seek no sponsors, because when someone writes a check, there is an obligation of loyalty for their support.  That’s something I put upon myself, but hey, I like sleeping at night.

Here’s why I don’t seek sponsors:  I am free to say what I want.  I can support, or not support any non-profit I wish based on my perspective as a patient.  I can make jokes that are more adult than PG-13.  I did consider becoming a non-profit, but I want all tax deductible donations to go to research and eduction by existing non-profits doing outstanding work.  I just do not see a point in the wasted expense of  corporate fees for my silly blog.  The thing is, I’m not just a blog.  I volunteer my time and I attend education events.  These things cost money.  I am “lucky” enough to have disability benefits from the Veteran’s Administration and access to world class healthcare, but I’d like to attend fundraiser to show those who contribute that people can lead productive lives once symptoms are under control.  I am in a remission-esque state.  My prognosis is good and I’m feeling good.

I have had a lot of kindness bestowed upon me by people I have never met in person, who send well wishes, prayers and thoughts.  I have also met many who do not have access to health care.  Good people fighting for disability benefits, and vilified by the media and neighbors for seeking help while fighting for their lives.  And once they get help, they are “awarded” a pittance that is gobbled up by medication copays, food and rent.  And while they live on these benefits, they endue ridicule from people who think they don’t deserve it.  It’s not that there is a majority of douce nozzles who vilify the sick, poor and elderly.  There certainly is an abundance of douche nozzles, but it has been my experience that they are the minority.  Douche nozzles just yell the loudest, so they are the ones being heard.  I want to change that.

The thing about being an activist is, in order to go places and do things, I require money to get to events.  Some activists are lucky to be self sufficient.  Some work a full time job and do activism in their off time.  Some have benefactors or sponsors to help their work.  My problem was, I needed funds to go places and do things to further my mission, but I did not feel comfortable asking for donations or working for a non-profit. I am also in no condition to hold down a full time job.  If I need to rest, I need to be able to rest and recover. Now, I have a solution.

Yesterday, I became a Brand Ambassador or sales rep for Votre Vu.  Everyone has skin, it’s a product line I can stand behind and feel comfortable recommending to others.   I get to use my unique set of skills as a manicurist and beauty school drop out.  Sure, yoga pants and novelty t-shirts are a staple in my closet, but I know skin care.  Working as a Brand Ambassador for Votre Vu will help with expenses to get out, and show the world that high quality health care and the right treatment; not most cost effective treatment, saves lives.

So, in order to get my business going, I have started a Facebook page and Twitter.  This way, I can raise awareness without a bunch of “words from my sponsor” mixing my business with my activism. Yes, they will mingle like chocolate and peanut butter at times, but I will do my best not to make it a regular thing.  

Today,  I am writing about it to grow my business- of course, but I want to make clear my mission: Raising awareness and assisting non-profits without compensation.  I don’t want to be compensated by non-profits because it allows me to work with any non-profit I wish.  I play nice in “The Sandbox” with everyone who is working for cures and making information freely available.  I have the freedom of not competing for funds.  Non-profits have to work to get research and education funds from donors.  I want to help.

So, I’ve taken this post and rambled about my plans.  Thanks for reading.  Please “like” and “follow” where applicable.  And if you have an occasion for a gift or would like to try some great skin care, please keep my Votre Vu store in mind.

Now, back to our regularly scheduled program…

WEGO Health: Miss Congeniality & Hilarious Health Activist

Day 30

Chris Dean

Virgo. Pocket Duck Expert. WEGO Heath Activist.

I heard about Chris Dean’s blog, Life Your Way! in June of 2012.  Since that time, I  try to read her blog every day.  It is truly where “Health and Humor Meet in a Head-on Collision”.  I am supporting her nomination as Miss Congeniality and I nominated her for Hilarious Health Activist.  I am encouraging  you to go HERE and vote for her confirmation, or HERE to nominate her.

Okay, now I know that you are no minion and need proof.  (I love that about you by the way!)  So you can read more about me going on and on about her, or you can just skip to the end and go HERE and read her blog posts.  I encourage you to do both, but I understand there is your time to consider.  I’ll be brief but I won’t be offended if you head right off to Chris’ blog.

Chris writes openly and candidly.  She is brave in her sharing and appears not to be afraid to admit her short comings.  In fact, she will point them out to her readers and make them laugh with her.  She has no agenda.  Sure, all bloggers have a small urge inside them for total world domination; and Chris has told me herself, “It takes a special kind of crazy to be a blogger.”

When I read Chris’ work, I feel I am reading the words of someone who enjoys writing.  I feel like she does it because it’s fun and it helps her cope with the craziness that comes with being diagnosed, misdiagnosed, re-diagnosed, etc…

Chris posts every day, whether there it’s NHPBM or not.  She doesn’t write  about life at her pity party, she invites you to join the party on her blog.  Her life, like everyone else, is not perfect.  She poses great questions about her health and health topics and brings to light facts about her condition and the conditions of others.  She uses humor to teach and it is her talent.  I always feel better after reading her posts.  I have learned about things like; birding, alternative methods of yoga- and Joe My Zod, have you seen her artwork?!!  (Ah, WEGO, consider this my suggestion for an art category next year!)

Chris calls her art therapeutic for her, but to those like me who admire it, it is a gift of expression.  When I look at her art, I FEEL something.  It is a representation of her feelings and thoughts, and her art makes me get a feel about what she’s feeling.  And I look at many and think: I feel like that too.  I can’t put it into words, but I can show you some of the things I feel with her art work.

I could go on, but honestly, experience it for yourself if you haven’t already.  Read her words, see her pictures.  Everyone has their own reactions to art and words.  I know that if you take the time to check out her blog; you will laugh, you will learn, and I hope you too find something she has created that explains something you can’t describe in words.

Chris’ Blog: LIFE YOUR WAY!

Facebook: Invisibly Ill (show some love with a like)

Follow her on Twitter @Pixiecd13

And don’t forget to nominate her!

So… What Did The Doctor Say?

I have had many conversations with many doctors about my prognosis and treatment.  There are times these conversations are redundant.  Not in a bad way, it’s because there are times when there are no changes in my symptoms or blood work, which in my case has usually been a good thing.  Why?  Well, it means things are not getting worse at that time.

Because I see my specialists four times a year, it means I have many appointments.   How many specialists do I have?  Well, there’s rhematology, pulmonology,  gastroentorology dermatology, podiatry, occupational therapy and psychology- you now to help me manage  dealing with all my specialists.   Then, there are appointments for tests that these specailists need, to keep up with what my body is doing; pulmonary functions test, twice a year; echo cardiogram once a year; and my personal favorite, an upper endoscopy.  That’s where a doctor sticks a camera down my throat.  I say that because I usually wake up feeling very happy.  The sedatives they use on that test get me a little silly and if I have to have crazy tests, I might as well enjoy a buzz every now and then.  Okay, aside from my chronic illness monitoring, there are my regular yearly visits to a primary care physician for regular check-ups, then my OBGYN for my lady-parts.  Long story short, I spend a lot of time with doctors, nurses and healthcare providers.

It’s not all that bad.  Once, I had a gaggle of test results from the VA Hospital to share wth my doctor at UCLA.  I requested and received a disc with those tests, brought my laptop and some snacks to UCLA and spent an hour reviewing the tests with my Rhuematologists.  I learned a lot about what the tests meant to my health and my doctor was able to enjoy a snack.  (Seriously, if you can, feed your doctor they do back to back appointments all day.  It wouldn’t kill you to throw them a snack every now and then.  Sometimes, I just grab a candy bar on my way in.  But only for your favorite docs.  You don’t have to be slutty about it.)

What were we talking about?  Oh yeah talking with our doctors.  For me, talking with my doctors is easy.  If I don’t understand, I ask questions.  I have had some weird appointments, but after 2o years of this, they all kind of run together and I just remember ones I learn from.  The tough part for me, is repeating what I have learned to my family.

And now, we can get to my favorite question, “So… What did the doctor say?”   It feels like a trick question.  When asked, I’m not sure what people mean.  Do they want to know my blood work numbers?  Do they want to know every word that was said?  Which doctor?

Yeah, my attitude can be considered somewhat crabby and I wouldn’t be offended if it was thought of as downright bitchy, but I can never give the right answer.  The people who ask me that question, love me very much and they want to hear good news.  Often, I have nothing new to say from the last appointment.  Sometimes I learn something so exciting, I use latin based words.  Once  an ex-boyfriend replied, “Stop trying to sound like a doctor.  You are not that smart.”  (Hence the title, “ex”.)  Seriously, dating has given me so much material, not about men, but about ignorance, sheer stupidity and downright douche-baggery (thats ignorance with malice), but I digress.

Back to my point:  It used to be disappointing to not be able to relay to loved ones that things were not getting better.  They were either stable or going in an unknown direction.   So many times,  the result of my appointments are, “Okay, we know something, let’s see where this something goes.”  If I had to hear that about my kid all the time, I’m not sure how I would take it.  I believe that if you truly want to torture a person, hurt their child.  That’s what chronic illness does to parents of children with a chronic illness- no matter the age of those  children.

Because I plan to live at least another fifty years, I had to find a way to make reports about my doctor visits not so uneventful, less uneventful when reporting to family.    Everyone needs encouragement, but I didn’t want to do it by providing false hope either, but I accidentally found a way.

I’m not sure when I had this conversation with my mom.  I do know it was before my sarcoidosis diagnosis.  It went something like this:

Mom, “So…. What did the doctor say?”

There had been no change in anything, so this just sprang from my mouth, “Mom, the doctor said I have scleroderma.”

There was a pause, then my mom started laughing.  I was so relived.  I found a way to make my mom laugh.  Watching my parents worry and wait is not easy, but I have it easy compared to their worry about my health.  Making my mom laugh made me feel good.  I used the same response on my dad and he laughed.

It wasn’t just making lemonade, it was taking lemons and squeezing  lemon juice back at Life’s eye.  (By the way, I totally ripped that off from the cartoon, Gumball)