Miss me? Come See me this Saturday...at the TA Arts Fest!

Click on the title link above to be taken on a swift journey to one of my many blogs...where I decided to post all the juicy details.

Ta ta,
Melanie

Quick, painful, artful, philanthropical, update..

It's been a while...again. And I'm more than under the weather, so I'm going to make this update as efficient and succinct as this verbose neuro girl can muster.

1. I'm in the midst of a full-body RSD aka CRPS flare-up
2. I have gained 21 pounds of pure swelling and cannot use my left hand or be touched anywhere from the waist up.
3. I have several extra faces for sale, but they are very expensive.
   
4. Aetna denied my doctor's orders for a 5-6-day hospital stay.
5. I'll be starting a trippy, 10-day regimen of out-patient IV Ketamine once all the psych and cardiology clearances come through
6. I was hospitalized for 9 days in February for an MS exacerbation
7. I had a surgery to implant a fistula (see video in 2.11.10 post) that, once matured, will replace the death trap permacath attached to my sternum and last working jugular vein
8. I've started a new art series for Mother's Day gifts
9. I am doing the MS Walk on May 2 at the Art Museum in Philly....hopefully by cane or by wheels to the finish line
10. Our team, Mel's Neuro Detour, is accepting new team members to walk with us, so JOIN NOW!!!!!
    
11. We are also graciously accepting donations to the team or to individual team members (like me)
12. I have already raised double my goal...which means I will be tripling it, and our team has reached our original goal of $2008 (the year I became a neuro-sicko), so I'll be raising that number too. We only have 11 days left, so keep the funds a-comin'
13. If you plan to join the team, we are each purchasing our own $20 Mel's Neuro Detour/F**K neuro disorder T-shirt, artfully designed by team member Kathryn Babson, who is making the long journey from Wilmington, North Carolina for the walk. If you haven't sent your T-shirt size to Kathy, please do it today before it's too late.
    

Neuro Detour: on paper: Renegade Rent Due/Mother's Day Sale...Tomorrow!

Click on the link above to get the details. And don't forget to check out the Where to Find Me column on the right side...lots of updates. Yippee.

It's your turn to indulge in some retail therapy.

I'm in a Group Show!....Opening art party tonight. Come!

Click on the title to go to the post...it's worth the exercise.

Sickos. Glamour. Giving. Ain't that what it's all about...

You all know by now, I like to shop - online, in line, in tiny shops, and medium-sized shops - but not big corporate chain stores and malls - yikes - they give me the creeps and aren't so good for a gal sans immune system.

I'm currently going through plasmapharesis treatment - it brings out the "best" sicko in me - but makes life a danger because it removes every single antibody from my system, i.e., I am immune-less (don't you love made up words!), i.e.#2, as long as I'm receiving plasmapharesis, there isn't anything my body can do to fight off whatever popular germ floaters pass my fortress of hand sanitizer.

All of you are potential medical enemies. Since I believe that getting sepsis once is enough, I'm choosing to spend my disability dollars (what few are left after life's expenses) online.

Don't ask me how I find these pleasant little shops - as you know my memory has a 30-second limit - so when I find a fabulous virtual store, it's like stumbling into a "pleasure chest." Just like when I was a choreographer - it's my job to make it up and your job to remember it.


SO REMEMBER THIS...
Appropriately branded, Lavish Giving, this boutique's plush to posh array of unique, practical, or just plain pretty gifts for everyone from your boy toy to your pampered pet is for all of you gimps and givers.














The Ohio-based owner, Jane, is a gracious cancer survivor with a mission. In recognition of the value of medical research, when you spend $100 she donates 10% of that to the charity of your choice. Even you frugalistas will find this user-friendly site a breeze to navigate, and your cart will arrive gratefully to the $100 finish line before you know it - full with gifts for all, even yourself.


PS
If you have the urge to give the gift of giving to me, I'll gladly accept your philanthropy on behalf of all the worthy medical research charities. Just email me for my address, size, or favorite color, and I'd be happy to oblige. And although I'd love the $800 foldable bike, my neuro-body isn't quite ready to take on a two-wheeler, let a lone a tricycle, or a car.

My POST: Art, Asses, Gulp Guzzle Gorging, Poetics, Permacath Art, and Pictures to Come...

FIRST OFF...
A big thanks to everyone who stopped by this weekend for my open studio, part of Philadelphia Open Studio Tour (POST) . My mother and I had a lot of fun meeting and mingling with all of the interesting people - from dear friends, to ex-co-workers-who-are-pursuing-an-MBA-in-Atlanta (holla David Papa! Enjoy your new drawing), to out-of-town strangers.

Over the weekend we had about 45 visitors, including quite an unexpected number patrons who purchased little paintings, purple-y collages, big drawings, and my very inexpensive, self-published chapbook; a near complete imbibing of a box of Pinot Evil (my favorite, adorably designed,cheap, yet super drinkable table wine...for goofy and informative links to this vino see below) and 2 bottles of Barefoot Sauvignon Blanc - it's an award-winning cheapie (currently on sale for $5.99 a bottle in PA Liquor Stores, and it's damn good, especially in the summer with sparkling water or plain seltzer).

To my open studio visitors, Thanks for sharing your time and a toast with me. You made my first (POST) experience a successful, inspiring, and exciting one.

Thank You! Thank You! Thank You! Thank You!

FOR MIAs...
To those who planned to come, but didn't make it: The brouhaha continued without you, but a tear was shed for your heart-breaking absence.

Brouhaha Etymology

Origin:
1885–90; < class="ital-inline">brou, ha, ha! exclamation used by characters repr. the devil in the 16th-cent. drama; perh. < class="ital-inline">bārūkh habbā (beshēm ădhōnai) “blessed is he who comes (in the name of the Lord)” (Ps. 118:26)

To those who skipped over me because they thought, who's this Melanie Miller chick, and how does she get off calling herself an artist: Satnam.

SAT NAM
is the Seed Mantra or Bij Mantra and it is the most widely used in the practice of Kundalini Yoga. Sat means the Truth; Nam means to call upon, name or identify with. Sat Nam means Truth is my identity and I call upon the eternal Truth that resides in all of us. Chanting this mantra awakens the Soul, and more simply means "really". It is pronounced to rhyme with "But Mom!"

MY MONEY, MY CLIMAX, MY CORPSE POSE UPGRADE
I don't believe I have or would have ever suspected that I would pair the wors money and climax. But this weekend is worth a crescendo, so....as part of my artful celebration, I treated myself to a new, clearance-priced 8 Piece Bed in a Bag. It was either that or an automatic kitty litter box, but I couldn't find one that was both in my budget and had decent reviews. (Leave a comment if you have litter box recommendations for future retail relish.)

If it weren't for my mother who is gifted with patience, a keen eye for my style, and vision superior to mine, I may have ended up with an over-priced, underwhelming, itchy, crappy, dry clean only ensemble. So add that quadruple biggie-sized thank you from above to my energizer bunny mom.

MOM:
DO NOT READ THE FOLLOWING UNTIL YOU SEE, "MOM, YOU CAN READ THIS"
IN LARGE RED LETTERS!!

And Speaking of Mom...
Mom's single, lives in Pittsburgh, is obviously one of the best mothers in the world and probably one of the best grandmas too (to my bro's beautiful kids; I'm single and childless). She's a great cook, conversationalist, cleaner of gimp-daughter's apartment and doer of said daughter's laundry, same-day flight booker for myriad ER visits and last-minute hospital stays (all mine; all her expense); and a great catch (i.e., those aren't implants).

If you're interested, email me with:

• Your similar-to-a-dating site profile, or a PDF of your profile if you have one
  
• RECENT pictures (no more than 3 please - and make them good ones)
• A copy of your 2008 tax return
• Criminal Record Clearance
• A short essay on why you think you would be good for my mother
• A complete 2-column list of your good qualities and flaws
• A list of ex-wives, current wives, and/or ex- or current-live-in girlfriends with contact info
  

I will pass your information on to my mother. If you don't get a response, bummer - but don't contact us. We'll contact you.


MOM, YOU CAN READ THIS...

BACK TO ME AND MY SPRINKLES ON TOP...
(NOTE to the YOUNGINS': The following contains profanity.)
I'm still using a bed set from my married days, YIKES!, and its time to get that karma off of my body and out of my space - even if it is a Nicole Miller (no relation - unfortunately). And the rest...to pay for 6 (of many) prescription refills, the two doctors' visits' co-pays I'll have this week, perhaps I'll free the scarf/wrap I put on layaway at Joan Shepp, and then last and unfortunately not least - that ubiquitous four letter word, debt. (If you thought I was going to write fuck or shit, luckily those are two things I'm never charged for - assuming we don't count the TMers bowel-savers: reasonably priced stool softener pills and enemas.)

Center for Emerging Visual Artists (CFEVA), might you consider making POST a biannual event?

FOR YOUR VIEWING PLEASURE: PINOT EVIL ON YOUTUBE...

Pinot Evil

I totally disagree with this guy. He definitely is a wineass.

Pinot Evil Vintage? France

I liked this video so much, I subscribed to his channel.

Taste Along w/ Adam The Wine Guy #171-Pinot Evil

His nerdiness and occasional high-pitched syllable makes this one a keeper.

EVENT! Representing TM, MS, and Other Disabling Chronic Illnesses Through Art

Dear Friends Near & Far,

You're invited to my "studio", which is included among 100's of artists as part of this year's POST, a city-wide open-studio art event. (How cool is that?)

It's my first year in POST, and my first year as a painter. I never imagined that when I lost my dance and my creative writing (for the most part) to Transverse Myelitis (TM) & Multiple Sclerosis (MS), I'd find it on paper and canvas?!

I'm grateful to have a new creative outlet, to be able to share it with others, and most importantly spreading the word about life as a badass gimp with a rare, debilitating, chronic illness. Unfortunately, nowhere in pop culture, are our lives accurately presented. That's not why I started this blog or why I started painting, but it's an added benefit that came as a nice surprise. And when you're sick like me, NICE surprises are few and far between.

I hope you'll stop by 10/10 or 10/11 from 12-6 for a visit, a giggle, a cup of tea or glass of wine, to say hi to my fab mom from Pittsburgh, or (dare I say it) to buy some art - 100+ original paintings & drawings starting at $10, as well as hand-made chapbooks of my poetry & art.

For this weekend only, prices will be less than on the Neuro Art Web site.

Feel free to spread the word. There's more info below.

Thanks!
Melanie

PS To check out a sampling of my smaller work, visit Neuro Detour: On Paper. And, if you can't make it this weekend and want to see my work in person, feel free to email me to schedule an appointment, or you can purchase work directly from the Web site.

**********************

Who: Mel's in POST (click to see my personal page on the POST Web site)
What: Philadelphia Open Studio Tours (West of Broad Street)
Where: The Drake, 1512 Spruce Street #1802, Philadelphia, PA 19102: View Map
When: Saturday & Sunday, October 10 & 11, 12-6PM or by appointment

A WORD (OR MORE) FROM THE POST DIRECTORS:

This October, The Center for Emerging Visual Artists™ is pleased to bring you the 10th Annual Philadelphia Open Studio Tours. Join over 300 professional visual artists, local businesses, arts organizations and galleries to celebrate 10 years of studio art! Artists and event partners in every neighborhood from Chestnut Hill to South Philly will open their doors free to public in the largest event of its kind in Philadelphia.


This year, the Open Studio Tours is happy to feature the following artists in the Center City West neighborhood:

Madeline Adams
Betsy Alexander
DoN Brewer
Kevin Broad
Mark Bullen
Estelle Carraz-Bernabei
Elizabeth Core
Deborah Deery
Jerry-Gerard Di Falco
Eric Frantz
Katherine Fraser
Carolyn George / CRG Studios George / CRG Studios
Thomas Kohlmann
MELANIE MILLER
Ted Mosher
Maria Nevelson
Nicole Pellegrini
Paul Rider
Carlo Russo
Jane Steinsnyder
Lauren Sweeney
Aleksandra Vasic-Lalovic
Angela Victor
Ernest Villareal
Burnell Yow!

You can check out all of these artists work and locations in advance on the POST site.

Artwork Images by Me

Who Would Have Thought A Dancer Could Become a Disabled-Neuro-Sicko-Painter, huh

It's been a tough neuro month, and it's about to get tougher, but there are moments of celebration in every day, and today I have a big one to share.

My piece, "X Marks Not the Spot" has been accepted for publication in the poetry and art magazine, Monkey Puzzle. It will be featured in issue #7, which is available for advance purchase.

Thanks to all of you who are supporting my life in transition. I'm feeling so grateful that I've found a new artistic outlet.

A body in revolt for a dancer is a big deal - hey a body in revolt "period" sucks - but transforming that body into 1- or 2- dimensions makes the pain/burden/loss/mourning process a lot easier to take.

Here's to self-expression - studied, taught, or intuited.

March 8th — 14th is National Patient Safety Awareness Week!

I received an email today with patient safety tips from I.G. Living, the organization that was integral in my fight against Aetna for coverage of my IVIg treatment and has continued to follow my progress on (AFTER NOTE 3.10.09: From Mom, Self-Titled "Editor At Large"...Remove "on". I'm leaving it, just to show how my cognition depletes as I get further away from my IVIg treatments. Thank goodness I start up again tomorrow!) personally. So, in addition to their tips (at the end of this post), I'm sharing some of my own.

MEL'S TOP 10 PATIENT SAFETY TIPS...FOR THE MOMENT

1. If your instincts are different than your doctor's orders, seek a 2nd opinion...or get a new doctor.
2. CALL your doctor if something doesn't feel right, or if you're feeling worse. DON'T wait. Even if it's the weekend. That's what residents are for. Never feel like you're "bothering" your doctors, nurses, or support network. They'll get over it, you're body may not. THEN, call your mother or sister or someone else you can cry to, bitch at, or just let them know, hey, I'm not feelin' too hot.
   
3. Be proactive. It's your body. It's your health. Don't be afraid to stand up for yourself and what you want. Bark if you need to.
   
4. Get educated. Join national organizations for your disease and local in-person or online support networks. Meet other patients online or in person. No joke. It makes a HUGE difference.
   
5. If you have short-term memory like me, carry a voice-recorder or palm pilot (they also have portable keyboards) to keep a record of anything pertinent to your health or general life.
6. If you don't have someone to accompany you on your doctor visits, record them (See #7). Most doctor's won't mind. If they mind, see #1. PS If you're mother is accompanying you, record anyway. She'll always hear what she wants to hear. (Love you, mom!)
7. Use a daily, 7-day pill organizer (mine has morning, afternoon, evening, and bedtime).
8. If you live in a high-rise, let management &/or front desk personnel know if you are disabled, a heavy sleeper, or just too damn weak to make it down the fire escape. They usually have lists for fire drills or emergencies. Let your neighbors know too. Pray that it's the hot fireman or neighbor that comes to the rescue.
   
9. If you feel someone is harassing you because you are disabled or sick, don't hold yourself back from telling them, f*ck off.
10. Buy art. It will make you happier, therefore healthier :)
    

SHARE YOUR TIPS

As patients, we're as unique as, dare I say it - people. Oh my! We are people too. (Note: sarcasm). We all have different safety issues.

Please share your tips - in words or video - on the Neuro Detour Interactive page. Look for my 3/10 post: "March 8th — 14th is National Patient Safety Awareness Week! Please share your tips. Thanks, Mel" and hit reply.



I.G. LIVING PATIENT SAFETY E-NEWSLETTER TIPS...

March 8^th — 14^th is National Patient Safety Awareness Week!

Dear IG Living Subscribers,

A key part of our mission is to provide you in the IG community with information, resources and tools that will positively impact your quality of life. March 8^th through 14^th is National Patient Safety Awareness Week, and in recognition, we’d like to provide you with a patient safety checklist (some of the suggestions appeared in the February-March issue). Feel free to print it out and refer to it whenever necessary.

Communicating with healthcare providers

• Ask your hospital or healthcare professional about patient safety, and how communication and partnership between you and your providers can be improved.
• Request the pedigree of your pharmaceutical product from your healthcare provider.
• Be sure you know the brand name of your IG, as well as what it looks like (bottle, shape, color, size).
• Talk with your healthcare providers about where they buy their drugs, and ask if they follow "own use" policy.
• Ask your pharmacist if the pharmacy has a policy of not dealing in the secondary wholesale market.
• If you receive infusions at a clinic, verify that the doctor is board-certified.
• Call your doctor if you experience new or different side effects from those you’ve had previously or that are disclosed on the drug’s packaging.
• If a drug is either not effective or stops being effective, return it to the pharmacy.
• Examine your product’s packaging: Is it clean and sealed? Look closely at the preciseness of the labeling.

Protecting yourself

• Rid your medicine cabinets of old or expired medications.
• Obtain copies of all your healthcare records, and keep them in a safe place.
• Write down all of your prescription and over-the-counter medications (including doses), as well as any allergies, and carry the list with you.
• Write down and carry with you the names and numbers of all of your healthcare providers and pharmacies.
• Talk with your family or other close individuals about what your preferences are for your healthcare, in case you are unable to speak for yourself.
• Let your healthcare providers know who they should talk with in case you become unable to speak for yourself.

At IG Living, our goal is to empower you to take more control of the decisions impacting your healthcare. Please let us know if this checklist is helpful — we’d love to hear from you!

Thank you,

Ronale Tucker Rhodes, Editor
editor@igliving.com

Site Update: Neuro Art For Sale

In addition to writing about and advocating for myself and people with neurological disorders, disabilities, and chronic or rare illnesses, I've begun painting my experience. Here's a sampling of what I've been up to.



Please check out Neuro Detour: on paper to see the new works, buy one (or 2 or 3), or tell your friends to do the latter.

Thanks!
Melanie