Hurt Blogger

When I first saw Joanne’s RA Awareness video about a year ago, two things struck me: the palpable pain and frustration in her eyes that I so often see in my own eyes when looking in the mirror, and the utter mischievous determination to push herself to live her life the way she wants to despite what her doctors tell her. She was an instant inspiration to the #rheum community, and continues to be as she finds healthy ways to do what she loves. 

Joanne is going one step further and next weekend (along with the help of her community) will hold the first ever “Wurmies R.A. Walk”! Her determination continues to inspire me, as she reminds us that just because this disease tries to control our bodies, we can fight to not let it control our hearts and minds!

Even if you can’t run like Joanne, her story reminds us to continue pushing to do what we love in life!

I had received a text from my general manager, Damon, about them setting up a fundraiser & walk after the Owner of all 3 of the Jets Pizza stores here in Toledo, OH saw my YouTube video. I then got a call from Jason, the owner, saying that he wanted to do a fundraiser/walk to raise money, awareness and help find a cure for RA.

Posted on June 2 2013 with 4 notes

If you follow me on Twitter, it’s likely become apparent that I’ve been hog-tied by Arthur and he is exacting a special kind of torture on me lately.

I don’t always like to write about the low points, because I feel some Herculean (or is it Predsonian?) need to hold the whole world up on my shoulders; but I was reminded by the wonderful women behind the For Grace – Women in Pain Conference recently that these moments are just as important to share.  We don’t always talk about them, because vulnerability is scary.  Yet if no one says anything, we start to believe we may be the only one hitting bottom on that given day.

Let’s back up.  I started Actemra infusions last October, and held out hope that this would be the med to send me on a path to remission.  Waiting for it to kick in, I got by on extended release morphine, without it… well let’s not go there. After a couple months I made the decision to wean off of morphine so I could judge how well the Actemra was working, because I was so utterly convinced it was.

What ensued were knees that are scarily swollen to the point of complete immobility by the end of the day, disks and sacral joints that took two trips to the OR to help alleviate pain, a back that refuses to lie flat at night, and now un upper body rash that through biopsy was just confirmed as a simultaneous staph and rare fungal infection. Don’t I sound fun?

For some reason, I was still convinced Actemra and I were on the same page: heading toward remission.  Hope is a funny thing, and has left me in a state of shock since my sit down with my rheumatologist last week.

He entered the room and said, “I’m afraid to walk in here and see how you’re doing.” We both knew in our gut how this appointment would go.  After learning of my dual skin infections and need for aggressive treatment (hey – at least its not med-induced acne this time!), I was still fixated on how this would delay my upcoming Actemra infusion.

“It’s not working.” His words passed through me without incidence. How did we go from extreme hope to this?

Discussing my dwindling medical options, the conversation hung in the air like an eerie fog.  First, I get over the infections. Second, I hold on for dear life because Arthur is about to get “rough” while I have to halt rheum medications. Then, we’ll go from there.

I call my husband, my family, report the findings in a clinical manner, and label this patient as “fine and surprisingly not upset.” When truly, I was in shock.

To manage the growing pain on the freeway drive home, I cranked up the volume and began belting out La Roux,  “This time baby, I’ll be bulletproof.” I burst into tears. I sing louder, realizing I feel far from bulletproof.

These are the low moments in our disease journeys. When we feel scared and alone not knowing where the hell we’re headed next.  Even though I clammed up publicly, I reached out to my autoimmune medical friends, from fellow advocates to various healthcare professionals.  We talked life and strength. I shed more tears.

After allowing myself to be sad for a day (cause that’s healthy from time to time), I woke up the next morning and brushed my shoulders off, Jay-Z style.  I started being proactive, still in shock mind you.  I saw my pain doc, we refilled the morphine so I can function over the coming weeks.  I made goals, so I can feel in control over something.  I’m being kind to myself – its not my fault. 

Now several days out from the initial shock, I feel a renewed strength from our autoimmune community and I thank you all for that. I’ve been proudly wearing my CureArthritis.org band and using it as a continual reminder to ask myself, what can I do TODAY to help cure arthritis?  Focusing on that allows me to keep all of this in perspective and remember that this too will pass.  I’m not alone in all of this, and neither are you. That keeps me smiling. 

Posted on May 8 2013 with 15 notes

As compiled by the #rheum and autoimmune community:

Over the years I have watched my skin and hair go from glowingly radiant to irritable, to downright pissed off and spiteful.  Having grown up in the south, the idea of leaving the house without a stitch of make-up or perfectly coifed hair was a confessable sin. 

So I present to you possibly the bravest thing I’ve ever done: a picture of me on day three of a migraine with (gasp) no makeup, then my go to 6 minute makeup look, and finally my bright bold lips that say, “Suck it, Arthur!”

Since my teens my southern style grooming habits have become a means of self-expression, and more recently a means of fooling everyone around me (including myself) into believing that I feel better than I do.

I’m all for being comfortable in your own skin, something I am grateful to learn does indeed come with age, but I’m also a big believer in putting your best face forward – representing who you are (inside and out), in a way that makes you feel good about yourself – for yourself, whether you’re a guy or gal.

While I wish my skin and hair were radiant enough to proudly go au natural, I simply can’t go there after years of prednisone (and not feeling like ‘myself’). Neither do I want to walk around with a five-pound Merle Norman mask on either.

I like my skin to breath, my hair (on my head) to flow, and my personality to scream through in a few bold color choices.  Basically, I want to be the picture of health – of mental health. A pair of bold red lips, or obnoxious nails can do a lot more for my overall well being than any self-help book.

Regardless if you like to go au natural, or be drenched in color – we have to be careful of our product choices, after all our skin is an organ and it’s just as cantankerous as all the other autoimmune bits and pieces.

Below I have compiled a list of some of your favorites for appeasing your skin and getting in and out of the shower/bathroom as quickly as possible – preserving maximum spoons; along with my favorites that get me out the door feeling like a million bucks – well… at least looking like a million bucks!  There are several tips and tricks to help you appear healthy and radiant, and awake and happy. Enjoy and please comment below if you have more tips or suggestions!  (I should also mention, I am neither paid or strong-armed by any of these companies.)

Hurt Blogger’s Five Skincare must haves:

• CeraVe – Face and body lotions 
• Lush – Handy Gurugu, Bath Bombs/Melts/Bubble Bars, No Drought (Dry shampoo)
• Parissa – Face and body waxes for at home
• Queen Helene – Mint Julep Mask (with zit-zapping sulphur)
• Grapeseed oil – healing nighttime moisturizer

Hurt Blogger’s Six Make-up must haves:

• BB Cream/Tinted Moisturizer: Too Faced (continues to improve my skin!)
• Blush: LA Minerals – Hot Minute Bronzer
• Concealer: LA Minerals – Hide it concealer, Tarte, or Too Faced concealers
• Eyeliner: Smashbox, Eyeko for an easy cat eye, Tarte - smolderEYES
• Lipstick: Too Faced - La Crème, Lipstick Queen - Glossy Pencil, Tarte - Lipsurgence, or Lush – Liquid Lipstick, Urban Decay
• Mascara: Maybelline – Great Lash, the good old standard really is the best, BUT I recently fell in love with a sample of Benefit “They’re Real”

Your favorites broken down by body part/purpose in alphabetical order:

Acne: Alba – Natural Acne Dote, Burt’s Bees – Natural Acne Solutions, Proactive

Body wash: Dove Sensitive skin soap, unscented Neurtrogena soap, Philosophy Bath and Face Wash

Eye (creams): Clinique For Men – Daily Eye Hydrator, Origins – No Puffery, Soap and Glory’s – You Won’t Believe Your Eyes

Eye (Makeup): Benefit- Bad Gal Lash, LA Minerals – eyeshadows, Maybelline Mascaras

Ease of use: Lush – Ro’s Argan Body Conditioner (in shower lotion), Sonicare - toothbrushes

Skincare Items: Cetaphil, Clinique - exfoliating scrub, Witch Hazel, L’Occitane Face cream, Lush - Ultrabland face cleanser, Olay Moisturizer, Proactive Refining mask, Soap and Glory’s Hocus Focus, Vanicream Sunscreen

Hair Care: Biotin supplements, DevaCurl No Poo, Jason Restorative Biotin Shampoo/Conditioner, Lush Solid Shampoo and Conditioner, Nioxin System 2 (for hair loss), wide tooth comb

Hands: Burt’s Bee’s – hand cream, Lush - Lemony Flutter Cuticle Butter, Bad Hands Line, FAB 

Makeup: Bare Escentals (Some people swear by it - though this angers my skin! I recommend LA Minerals as its talc free), Dr Hauschka makeup, HoneyBee Gardens, Covergirl NatureLuxe Lip Balm, Revlon Lip Butter, Tarte Cosmetics – Smooth Operator Illiminating Serum, mineral foundation, Physicians Formula, Benefit Birthday Suit Cream Shadow, Laura Mercier, Pixi wakeup

Lips: Boots Lip Gloss, Burts Bees tinted chapstick, Lipstick Queen - Glossy Pencil, Lush – Liquid Lipstick, Tarte - Lipsurgence, Too Faced - La Crème

Nails: Zola, China Glaze, OPI, Essie, Butter – all are 3 free (meaning no toxic chemicals)

Teeth: Sonicare, Sensodyne, Pronamel

All natural at home remedies for skin and hair: Lemons, coconut oil, Grapeseed oil

Scarring: Silicone scar pads at night, vitamin E oil for the day

Ease of getting ready: A stool in your bathroom and shower, in shower lotions, shower cap, Lush’s No Drought dry shampoo, Lulu Organics Hair Powder, shower cap

Makeup tips for faking the funk: white/gold/nude eyeliner on the lower waterline and inner corner of your eye, blush on your cheeks – the rim of your nose – and across your forehead, a little concealer to hide the dark circles 

Posted on March 31 2013 with 2 notes

Tapering off of extended release morphine made me want to stab someone, or something. Sorry for not sugar coating it – or agave/honey/stevia coating it.  As with most things in life, if it’s worth having, then it’s not going to be easy. That proved true for last week’s MRI.

At a recent neurological appointment that I almost blew off due to the exhaustive routine nature of it, I happened to mention at the end of lots of pleasantries, “Oh, and is it a big deal that I can’t feel a few of my toes?” The full examination also proved that I had little to no heat/cold sensation in either foot. That explains why getting in the fiery bathtub was so easy…

Skip forward several days.  I’m sent into a small room where I am to disrobe my humanity and don the requisite patient garments.  I am met with issue number one. The bench which cleverly doubles as drawers for gowns, pants, and ubiquitous hospital socks, sits so low that bending down to get in this thing had Arthur laughing his ass off at me.

Drowning in my garments I tug at them and attempt to tie them to reveal that there is a female patient under there, and promptly give up. Whatever, I’ll rock my sagging pants… though I may be in the wrong part of LA for that.

I’m lead to problem number two, and instructed to sit in a chair that is there to please the design tastes of the controlling few instead of actually comfort the waiting patient.  

Having checked multiple boxes indicating I have various metal in my body, the MRI tech hits a wall trying to determine if I can safely enter this brand new high-powered machine.  Apparently the IUD that I recently had implanted to keep me from accidently reproducing flying monkeys due to all of my medication side effects could possibly burn me from the inside out. Pleasant.

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Posted on March 6 2013 with 6 notes

Have you been wondering what Stanford’s Medicine X is all about? Or debating whether you should apply? Or just want to know what it means to be an ePatient? Tune in and watch the live Google Hangout from the comfort of your pjs, tweet in your questions, and several of 2012’s MedX ePatients will answer your questions on the spot!

Have any questions before hand? Comment below and I’ll be happy to answer! We hope to see you there! -Britt

Posted on March 3 2013 with 2 notes

Anonymous asked: I'm interested in applying for the scholarship but I don't think I qualify as an ePatient. Their definition is "An ePatient is a person who uses the Internet and its various digital platforms such as social media or smartphone applications to gather, disseminate, and/or record information about a medical condition to which he or she is personally connected." I've used apps to "gather and record" info about my RA but haven't been so public about it.. do you recommend applying anyway? Suggestions?

Hi Anon!

I’d say the fact that you submitted a question online, through a health related blog makes you an ePatient! Also, that definition is trying to give patients various examples of what might qualify them for the program. The Stanford Medicine X conference is geared to emerging health technologies as well as showcasing how patients and healthcare professionals are already using them for their own good or the greater good. 

I think if you have found greater good in using various healthcare technology, and have found community in that, and want to become a better advocate or even learn how to become one - then apply.  Check out the applications, and if it seems right for you and you think you can contribute to Medicine X 2013, apply! We all have to start somewhere!

Best of luck,

Britt

Posted on February 19 2013 with 1 note

Anonymous asked: Once again your diagnosis story really touched me. Its so similar to mine its scary. But it does wonders for my feelings of isolation. Thank you.

Hi Anon! I truly appreciate your kind words, and it terrifies me that we’re so similar :( And thank you for helping me feel less crazy too… Hang in there. Hugs -Britt

Posted on February 19 2013

Ever wanted to share your journey as an ePatient and help influence emerging health technologies? You can apply to one of four tracks:

1. Engagement & Producer Track
2. Presenter Track
3. Design Track
4. Leadership Track

Check out the Stanford Medicine X ePatient Scholarship Program 2013 website for answers to all of your questions!

P.S. It was the best application I ever filled out as an ePatient.

Posted on February 18 2013

Check out my latest post on CreakyJoints.org!

Britt gives herself a swift kick in the ass and takes her own advice.

Posted on February 11 2013 with 5 notes

This past week I was interviewed by the eloquent and thought provoking Chris Snider on his show “Just Talking”!! We discuss ePatients, life, my story, and chronic pain - check it out!

Is it odd that I’m so proud over getting bleeped? 

Follow Chris on Twitter and listen to more of his great interviews! Thanks again for having me!

Posted on January 16 2013 with 3 notes