Accessories make the disease, or What color is my MS ribbon?

March is Multiple Sclerosis (MS) Awareness Month, and more specifically, MS Awareness Week is March 7-13. And this is not to be confused with World MS Day on May 30th. So many months and weeks and days devoted to awareness of this ever-changing and incurable disease. But I can tell you one thing for sure: even though I have this disease, I am still learning about it each day. I also know one more thing: that most people are not aware of it at all. I mean, they have heard of MS, or they know someone who has it, or isn’t that what Richard Pryor had or Annette Funicello, Squiggy from Laverne & Shirley (David Lander), or Selma Blair? But there is still a lack of awareness.

I thought about what I did and did not know when I was first diagnosed. After realizing I did not know much, I did what most of us do… I Googled it. Some info was helpful, some was not; some accurate, and some not. (Happy belated birthday, Dr. Seuss!) I thought of all the diseases out there – what do they all have in common? A ribbon, right? Every disease, aliment, cause, condition, etc. has a ribbon. That was something I could get on board with because I am a girl and girls love accessories! They complete the outfit, they make you stand out, they make a statement. I needed to know the color of the ribbon for MS because I hoped it would help me stand out and make a statement.

Google came to the rescue once again! As I typed it in the search bar, I was hoping it was a dark purple, like an eggplant color. Everyone looks good in deep purple, and anyone who knows me knows I LOVE purple. Not just any purple, dark purple… aubergine. That was the color of my bridesmaid’s dresses, the flowers, and all décor for my wedding, which happened in August. Yes, I chose a winter color for a summer wedding. Don’t judge me. It was my day… well our day, if you include my husband. Anyway, back to the MS ribbon:

Orange. Not just orange…safety orange! Traffic cone orange. Convict jumpsuit orange. Orange is the new… nope, I cannot say it. Suffice it to say, orange is not in my color wheel. And this is an in-your-face orange. No softness or subtleness about it. It is orange. The only time I EVER wear orange is when I go to a San Francisco Giants baseball game. (Go Giants!) But that includes a cocktail, a hot dog, and a day in the sun, so the sacrifice is worth it. This cannot be the color I wear to help others become aware of MS. But then I remembered: accessories make the disease. So, I wondered, why did they choose orange?

The truth is there are more conditions and causes than hues or shades of colors. They have even started adding accessories to the ribbon colors in the form of stripes, dots, two-tones, and more. The MS orange ribbon is shared by:

• ADHD
• Agent Orange
• COPD
• Cultural Diversity
• Kidney Cancer
• Leukemia
• Lupus
• Melanoma
• Malnutrition Awareness
• Reflex Sympathetic Dystrophy Syndrome
• Self-Injury Awareness Day
• Sensory Processing Disorder
• Spinal Cancer
• Prader-Willi Syndrome

Some of these I’d heard of and some were new to me, and all are important. As I scrolled through the many, many colors of ribbons and saw what they represented, I started to feel better and better about this orange color. When you think of orange, what do you imagine? Picture it in your mind. I imagine loud, noticeable, fire, flame, warmth, sunshine, health, joy, heat, enthusiasm, creativity, success, encouragement, change, determination, health, stimulation, happiness, fun, enjoyment, balance, and energy. (And of course the Giants… and peanut butter – yum!)

I found it ironic that many of the things that orange brings to my mind are exactly what MS can damage or take away. Maybe this ribbon was smarter than I thought. Is it here to bring awareness of what MS takes away from those who survive with the disease or does it give us awareness of what MS can’t take away?

According to the National Multiple Sclerosis Society more than 2.3 million worldwide people have been diagnosed with MS. In the United States, a recently completed prevalence study funded by the National MS Society estimated that nearly 1 million people over the age of 18 live with a diagnosis of MS. Yet with all these MS Warriors out there, I am amazed at how many people have no clue what MS truly is.

So as a newly diagnosed MS warrior, here are the Top 10 things I want everyone to know:

1. Talk to your kids about MS. They know something is up! My son knew it as “mommy’s bad balance days” before my diagnosis, and we still use that to this day. My son is 7 (soon to be 8, wow, where does the time go?) and is aware that I have MS because we talk about it. Kids are smart. They know when mommy does not feel good. My husband and I made sure to be up front and honest, give him information that is age appropriate and will not stress him out, and encourage him to ask questions. He even comes to my virtual neurology appointments and knows my doctors.
2. Just because it’s not cancer doesn’t make it better or mean it is not serious. Please do not tell me that I am lucky it isn’t cancer, or whatever your disease of choice. They all SUCK equally! Do not compare diseases and remember, everyone is in their own fight and each round of that fight is different. If you thought Rocky took a beating, try going a few rounds in the MS ring.
3. Ask me anything about it. I will let you know when I don’t want to talk. I think everyone is worried about asking questions, getting details, or just talking about a disease or difficulty someone has. It IS difficult, but realize that if you act like you don’t care to ask, we wonder, “Why?” Or at least I do. Please talk to me about it, share your concerns and fears, ask questions. Believe me, I am afraid too, but we all need someone to talk to now and again.
4. Don’t feel you need to be a Pollyanna all the time because MS sucks! I know that it’s important to stay positive, or at least that’s what everyone says. And it’s true. But you know what else is true? MS sucks! I sometimes cry when things are difficult or when I feel alone or am struggling. And when that happens, I give myself the gift of allowing myself to be upset, pissed, angry, emotional and a complete mess about it. Am I like that all the time? No, of course not. And if you feel consumed by the negative, you should talk to a professional about it. But when I feel down, especially as a mom who can no longer run with my son, I allow myself to be frustrated. There will be a lot of these times, but guess what? There will also be good times and things we can still do, and we need to seek out those solutions. You can be the mom with MS who kicks ass while feeling like someone is kicking you in that same ass.
5. Multiple Sclerosis and Muscular Dystrophy are not the same. Maybe this is due to my age and the fact that I watched the Jerry Lewis MDA telethon every Labor Day weekend when I was a kid. Hell, I even donated a few times. Super important cause, but I am not a Jerry’s Kid. Want to learn more about Muscular Dystrophy? Ask the Mayo Clinic.
6. MS is different for everyone, me included. The “Multiple” in MS really has multiple meanings. It means many, as in many scars/lesions. It means many, as in many people have it. It means many, as in there are many treatments and medications used to control or slow its progression. It means many, as in there is more than one type of MS. And it means many, in that there are many ways people survive and suffer with MS. And because of that, we do not all have the same symptoms, experiences, feelings, thoughts, ailments, outlooks, or abilities. Please don’t tell me about how you have a friend who is doing great. Maybe they are and maybe they are hiding it. Many people with MS do hide and suffer in silence. But that is them and this is me (we). It is my hope that the Myelin Shuffle project will help empower others to speak out.
7. There is “parent tired” and then there is “parent-with-MS tired” and naps don’t help! I thought having a newborn at 43 was the most tired I had ever been until I was diagnosed with MS. Fatigue is the number one symptom that people with MS endure. It is the kind of fatigue that can feel worse after taking a nap or sleeping through the night. (Of course, when was the last time I slept through the night?) Trust me, we are not being lazy. We just have no energy. I think I need to rest for the 40th time since I started writing this blog.
8. When I have to pee, I REALLY have to pee! And don’t get me started on poop! When my son got potty trained, I thought I was done with diapers. Boy, am I stupid? Now I live to find the most comfortable, absorbent, and discrete pee pad. (I love saying that – I sound like a puppy.) And one day I may need the full-on adult diaper. Most people with MS suffer with incontinence and fear long drives or other events because they are not sure they will make it if there is no restroom close by. I used to search for directions to a place. Now I map out restrooms and plan how much I will drink that day. And let me answer the question you are all wondering: Yes, this goes for bowel movements too… if you can have one. Constipation is another fun prize in the MS gift bag. Actually, I am glad I had my son because I did not know it at the time, but he became the Cliff’s Notes for pee and poo that I would need for myself and my MS incontinence. Parents: Remember when you had to track how often your little one went number one or number two? Yep, it’s back!
9. Taking a shower is no longer relaxing and refreshing. I have taken a shower and washed my hair every day since I can remember. Call me high maintenance. I call myself clean. It is like my morning coffee. Well, actually, I will ALWAYS take a shower over coffee. But let me tell you, it is not the spa-like experience you are thinking, and I am not a prima donna. I am more like an endurance athlete because when I take a shower, I feel clean and get knocked on my ass at the same time. The constant pain and fatigue that people with MS deal with every minute of every day takes its toll and makes it hard for us to do things that most people take for granted. And the bitch of it is, most MS patients have a low tolerance for heat. Heat can literally knock me out of the game of life for hours or even a full day and night. So those nice warm showers are gone.
10. Hi, my name is Tina and I am NOT an alcoholic. Before I was diagnosed, I could not understand why I would stumble when I walked. I would try to saunter but end up listing to the side and shuffling my steps. (Shout out to my shufflers!) Walking my son to his morning class, I would be concerned people would think I had been drinking at 8AM. Okay, so maybe I had done that in the past – in my younger years during the wee hours under the bright lights of Las Vegas. I even got pulled over by the police just for walking to my car, sober, after a comedy festival. But that’s for another blog. It takes so much effort mentally, physically, and emotionally for me just to walk straight, and believe me, when I make it to my destination, I think I deserve a drink. LOL

All this is to say that now, when I think of orange, I see why they chose a shocking color. It is shocking how much MS is misunderstood, how people living with MS are unsupported, and how little funding is going toward finding a cure. I decided to take orange and find a complementary color on the color wheel and guess what was there? PURPLE.

Now you know why my website is purple and orange. This March, I will make my statement once again, my way. This is my disease, and I will wear my orange ribbon with pride and personalize it with a bit of purple. MS is me and my ribbon accessory will stand out!

Tina