My new snowflake tattoo is sparking conversations about MG
The teal design on my wrist is already contributing to my advocacy efforts
Snow in September?
Last week I got a new tattoo. The session was my husband’s gift for our anniversary this year. I told the tattoo artist that I wanted something to mark my myasthenia gravis (MG): a snowflake with the color teal, incorporated into some sort of bracelet style. (MG is often considered a “snowflake disease” because it presents differently in each of us, and our awareness color is teal.)
At my appointment, she informed me that I’d never told her what MG stood for (whoops), so she’d done a little research and found out. She designed a beautiful cuff-style bracelet for my left wrist with a 3-inch-wide snowflake that covers the top. I have a series of smaller snowflakes and teal swirls on the underside.
The impact of a snowflake
Columnist Shawna Barnes’ new snowflake tattoo. (Photo by Shawna Barnes)
It was my first tattoo since getting out of the Army in 2011, and my first since getting sick. I was nervous about how my body would react, not just because of myasthenia gravis, but also because of my seizure disorder.
My fears were laid to rest as we got the needle party started and realized that I couldn’t feel a d*** thing. The small fiber neuropathy in my hands apparently went farther up my wrist and arm than I realized. The entire tattoo process simply felt like I had my transcutaneous electrical nerve stimulation, or TENS, unit on.
The lack of feeling is something to explore with my primary care doctor or neurologist down the road. It was an interesting incidental discovery, to say the least.
The whole appointment lasted three hours from design to cleanup. I felt well supported physically, so I didn’t experience any muscle weakness from extended physical exertion of holding various positions. The artist and I took regular breaks so we could both move around and stretch as needed.
One thing I was concerned about was healing. I’m on prednisone and azathioprine, and these immunosuppressive drugs can make healing slower than a snail on a lazy Sunday. Tattoos are essentially open wounds, as needles have pierced the skin thousands of times. Because MG is an autoimmune disease, our immune systems are already working overtime. Additional stress to the body can prolong healing or increase the risk of infection.
Another thing I considered was the makeup of the ink. My immune system is already on hyperdrive, so I knew the addition of a foreign body — such as tattoo ink — could cause inflammation or an immune response. I’ll be watching closely for a reaction as my tattoo continues to heal, but it’s been one week since my session and so far, so good. Fingers crossed!
My snowflake tattoo has already proven to be a talking point. People ask what it means, why it’s on my wrist, why it’s so big, what the color means, and why I got a snowflake in September. Others approaching me and asking questions have boosted my advocacy.
My single snowflake is starting a blizzard, and that’s pretty awesome.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Wanda Jewett
Beautiful!! I love your tattoo!
Kent Estes
I like the idea of a tattoo. It will invoke questions and good conversations.
Rev Frank Candalisa
Nice ink Shawna. Thank you for your putting it out there. Unfortunately, too many people don't understand what a Snowflake illness is, much less what MG is, is having positive affect. The for each person who ask you about your teal tattoo there's one less uninformed person. That's how the word gets out about our Snowflake. I pray for you and yours and your endeavors. Fr. Frank
Shauna
Cool name! ;-) also, great article. Question: When you got your tattoo, any considerations for MG? Any flaring if symptoms when you got it, or extra medication precautions since it does cause an immune response while healing? I had to cancel my 3rd and final tattoo appt when my MG unmasked and need to finish it, but I am worried about making myself worse MG wise.
Shawna Barnes
Hey Shauna :)
I was very hesitant because I didn't want to create an unnecessary flares or set myself back. I have had to use additional ointment to help some spots heal properly because it has taken longer to heal than it should because of prednisone and other meds I'm on. I took breaks and stayed on a pretty strict schedule with my meds to make sure I was good on that front. By being mindful and proactive I was able to avoid a flare! YAY!
Shauna
This is fantastic insight. Makes me much less afraid to finish my tattoo. I'm on cellcept and IVIG, so I am hoping the good stuff from IVIG helps but I think your extra steps will be something I also take just to be sure. Awesome you avoided a flare.
Stephen Voellinger
I am interested to hear more about short fiber neuropathy. My neurologist said I have it but then said he didn’t say that. I have neuropathy in both feet and I have generalized MG, not diabetes. I get tingling now in my hands and chin. And what is TENS?
Barry Porter
interesting. Please one question, since you are a Veteran. Have you applied for disability due to a service connection to Myesthenia? I am in the process, because of burn pit exposure and I am in the fact-gathering evidentiary stage. Any help will be apprecited. The more proof the better :) The tat is awsome :) Now I need to get some teal ink for my fountain pen.
Barry