Here are just a few things I do as an Advocate

Name: Here are just a few things I do as an Advocate
Brand: heidizme
SKU: 5cd60b0eaa7ed3f575f38051
Price: 933332.0 USD
Availability: InStock

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heidizme

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As an advocate you hold fund raisers, go to the lupus ball gala in NYC, Do speeches in schools and local clubs like kiwanis and moose. Walk a thons, golf fund raisers, talk on local and national TV shows to name a few.

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beyoutifulheart and 19 others like this

20 Comments

1witty_username Thank you for your messages. My reply to you ended up being so long, I thought it was best not to post it where this weekend's participants are signing in and out.

May 11Reply

1witty_username So many of us look perfectly healthy on the outside. Myself included. But when I sit or sleep for any period of time, it feels like "rigor mortis" sets in. My fingers, hands, feet and legs are so stiff and painful. Just trying to stand and take the first few steps is pure agony. After awhile, I limber up.....but it's a process. My small joints are the worst!

May 11Reply

1witty_username I have punctal plugs inserted in my tear ducts to preserve the moisture in my eyes because they're like sandpaper. Even with my tear ducts blocked, my eyes are a constant source of discomfort. (Dry and gritty) Restasis gives my eyes lubricating short term relief.

May 11Reply

1witty_username With the slightest anxiety, exertion, heat, sun or embarrassment, my cheeks instantly flare. Showering also flares up my face. When this happens, my face feels like it's on needles. I shower at night and keep a cool fan on my face during naps to try and start out the day as comfortable as possible.

May 11Reply

1witty_username You might think I'm miserable, but I'm actually very happy. I'm lucky to have a diagnosis because for years I had "complaints" to my family doctor, but no diagnosis. One day I went to the doctor with Gary (my hubby) and a resident doctor who had been caring for him was chatting with me and pegged it immediately. She ordered several labs and from there I was referred to a rheumatologist who gave me my life back.

May 11Reply

1witty_username I am currently on Prednisone, Plaquenil and Methotrexate (a chemo pill) to quell my symptoms. My Rheumatologist has hopes it will eventually put my R.A. into remission. I had been on Humira Injections for over a year, but was getting no relief, so have been switched to Orencia. My Rheumatologist has been giving me sample shots every week while we wait for a prior authorization from my insurance to go through. (Been waiting over a month)

May 11Reply

1witty_username I have a happy home life and am grateful for the many blessings that have come my way. To meet others who truly understand and can empathize with the ups and downs, the flares, the various symptoms and the never knowing what tomorrow will be bring is a Godsend. Of all the people on Poshmark, I am so lucky to have fell into your circle. Your words and wisdom are encouraging. I'm blessed in so many ways. I respect your journey and honestly holding you in the highest regard.

May 11Reply

1witty_username My husband, Gary has stood by my side for over 20 years and is a constant source of support, comfort, companionship and help. He does so much it doesn't seem fair. Not only does he take out the trash, he keeps the cats litter scooped and clean. He grocery shops, helps with laundry, dishes, vacuuming, EVERYTHING. Without him picking up the slack to allow me to rest, I honestly don't know what I would do. Never complaining and making my laugh. I'm still giddy over this guy!

May 11Reply

1witty_username Thank God for a fantastic team of doctors. Especially my Rheumatologist and Ophthalmologist. So many symptoms, so many "ologists". Never a solid sleep. Just naps here and there day and night. It's been my life for so long, it just feels normal to me. I swear if one more person tells me I can alleviate my symptoms with diet, I will scream!!!😳 Lol. Thank you for sharing your story and giving me the courage to share mine. You're a true gem.

May 11Reply

1witty_username 💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜 🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋 💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜 🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋 💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜

May 11Reply

1witty_username Today we: Support the fighters Admire the survivors Honor the taken And never, ever give up hope 💜🦋💜🦋💜🦋💜🦋💜🦋💜🦋💜

May 11Reply

heidizme @1witty_username well said my sister!! Love you 💜💜💜

May 11Reply

heidizme @1witty_username I was on plaquenil and an old drug quinine..I got worse and I'm allergic to stuff so now I do benlysta chemo infusions they have help give me spurts of energy I finally was approved by GSK to pay my copays. I pay acupuncture and massage and special facials out if pocket u can go broke. When my sister died her doctors in Allentown sucked I now go to Lebanon and they are fabulous.. I wish she had these doctors she'd be alive yet 😔

May 11Reply

heidizme @1witty_usernameu are like me a happy person I found out being an optimist and worry about today and trying to have fun while u can..is all that matters we cant worry and have stress..

May 11Reply

kkdollshack #130 stopping by to say hello and share your lovely closet 💜

May 12Reply

heidizme @1witty_username yea with paleo and gluten free etc..or dont u love when I was working my coworkers would say oh you're looking so great today only because I was laughing to hide it... But as diet I'm gonna eat what I like my poor sister never had a last meal.. I'm gonna eat what I enjoynwhike I can..life too short.

May 13Reply

1witty_username @heidizme I drink Crystal Lite for taste and delicious Premier protein drinks for nutritional value. As far a food goes, I eat when I'm hungry. I don't have regular meals because I don't have a "normal" sleep schedule. I sleep in spurts throughout the day and night. I won't deprive myself of the good things life has to offer if its affordable. Woke up a couple hours ago hungry. So I'm eating a cheeseburger and cottage cheese right now. @3:30 a.m. 🍔🐮 *carnivorous*

May 13Reply

nanayjay1 Stay Strong Lupus Sister. One day at a time. Living my best life everyday. Thankful for the support and folks that understand the invisible pain from within.

Aug 10Reply

heidizme @nikka40 here is the flapper style dress he made me

Oct 30Reply

heidizme please prices are fair I need what I posted it

Jan 01Reply