“When I am writing, I am trying to find out who I am.”

The Daily Post

Maya Angelou by Spanglej, CC BY-SA 2.0.Maya Angelou by Spanglej, CC BY-SA 2.0.

Words mean more than what is set down on paper. It takes the human voice to infuse them with deeper meaning.

Find a beautiful piece of art. If you fall in love with Van Gogh or Matisse or John Oliver Killens, or if you fall love with the music of Coltrane, the music of Aretha Franklin, or the music of Chopin — find some beautiful art and admire it, and realize that it was created by human beings just like you, no more human, no less.

There is no greater agony than bearing an untold story inside you.

The idea is to write it so that people hear it and it slides through the brain and goes straight to the heart.

When I am writing, I am trying to find out who I am, who we are, what we’re capable of, how…

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MS: Swiss Cheese and grief…stay with it.

I was a block of Swiss cheese yesterday. Tears leaked from my holes.

BLACK_GIRL_CRYING-516x340

Very early in the morning, that’s when it started…the leaks. Not until the day was done, did I look back, and see the source of my leakage. When I think of my brother, I am overwhelmed with sadness and it shuts me down. I didn’t want to give in to it, I wanted to be strong. Yesterday, I had things to do.

I should have stopped, sat down and stayed with the sadness. Instead, I kept moving; trying to run from it and… it chased me down. With every commercial on T.V. every stranger hugging in the street, every child in the Revco; I cried. Sometimes I only leaked, other times I poured, but, all day I did this.

I should have just stopped in the morning, and stayed with it. Maybe then…just maybe, my day would have been different.

Stay with it.

Comments welcome:

Have you been grief stricken? Have you found a particular way to deal with it? Hmmm,has it affected your MS? And if you don’t have MS, have you seen it’s affect in other areas?

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The Day After Mother’s Day

I was in the beauty shop today and making small talk with the woman sitting next to me. I asked “do you have children?”

First Christmas as a new Mom, Ho, Ho, Ho.

First Christmas as a new Mom, Ho, Ho, Ho.

Instantly her demeanor changed. She became sad and said, “ no”. When I saw this I perked up and gave her an excited “GOOD for YOU! That’s the best thing I’ve heard all day!” She seemed shocked by my reaction but then gave me a timid smile, kinda like laughing at a joke you’re not sure is meant to be funny. I went on to say, “OMG my life would be so much different if I had done that. More money, more vacations, more freedom, more FUN! Personally I think it’s a dirty trick played on us by society. Everybody makes it look soooo easy, adorable and wonderful. We’re like those lemmings that blindly follow the leader right off the cliff. I blame Angelina and Brad more than most. There’s this thing in us that makes us automatically do it, and feel sad if we don’t, and nobody tells the truth. You don’t know the truth til you’ve got’em and then you’ve got to continue playing the game or you seem like an awful parent, and who wants that!

If you’re reading this, you’re already my Facebook friend and you know what kind of parent I am. Imperfect, and if you DON’T know that, then you drank the kool-aid. Nobody is perfect, especially a parent, or even… good at it. We all just do the best we can at the moment, to always think that we’re doing it wrong.

So don’t be sad my sisters, and for god sake, don’t think you’re missing something. If you do, come to my house. Bring a bag because you’ll need to stay a couple of days (or weeks) to really get a feel for it. Stay til you get tired and don’t feel like doing it anymore and they’re still here. Stay til they get tired of YOU. Stay til they get pneumonia. Stay til they stay out all night. Stay til they bring that girl (or guy ) home with the tattoos up the ying yang. Stay til they get tattooed up the ying yang. Stay til they announce that you make EVERYthing worse! Stay til they fall in love.

Oh, and don’t leave now. It’s just getting good. Now… stay and fix it all.

Okay. You have your journey and I have mine. Neither one is more or less meaningful because of kids, so stop wishing secretly that you had my life. I need for you NOT to. You bring balance to my world I live thru you vicariously. You are my Condoleezza Rice and my Olivia Pope. You are my Robin Roberts and my Oprah. You are my Helen Mirren, my Cameron Diaz and my Johne’Parker.

Oh, and are people disrespectful enough to ask you …why? You must promise me that you’ll have ONE answer…drop dead!

P.S.Lemmings jumping off of a cliff is as much a myth as perfect parenting.

I just thought I’d share this tonight.

Comments welcome:

Do you have children? If you do, is parenting what you expected it to be? If not, how is it different?

 

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MS: “Denial or Determination?”

I’ve shrouded myself in denial since I was first diagnosed with Multiple Sclerosis in 1994.denial You know: I can do blah, blah, blah, because I’m really not that sick, and when that didn’t work, sheer determination was used. And I know I am not alone. So how are we MSers to know when this approach of denial or determination no longer works for us? Confession: my brain told me early on that this new job of school bus driver would be too much, but my heart said, “No”. My heart said, “Keep going, look at all of the ways that its been good for you. Everything will be fine. Give it more time, and whatever you do…don’t quit.” Well, at the end of the day, my brain won. My heart was a punk and simply gave in…literally.

Due to my heart “thing,” Takotsubo, described in my (click here) last post…I had to make the decision to resign from my new “almost job” effective immediately. I say “almost” because I was still in the training phase and was JUST about to move on. THEN, I would have been a school bus driver. Truth is, my Takotsubo was a gift. It took the decision regarding whether I could handle this level of stress out of my hands. I’d worked for the last 5 months changing every aspect of my life so that I could re-enter the work force. This, evidently, was not the best portal.

Listening to our bodies is the answer to the first question asked: How are we to know when the strategy of denial/determination is no longer working for us? If you’re not paying attention, or if you don’t trust yourself and your feelings, then maybe your body will yell at you like mine did.

It’s time to get back out there with a new sense of determination. determinationI’ve learned that not giving up means not settling for one or the other. It’s whatever works best at the time. As long as I’m listening to my body, I don’t ever have to decide.

COMMENTS: Have you found yourself reaching a goal due to either of these strategies? Have you found yourself attempting to reach a goal and ultimately having to give up? Did you start with something new? How did you do that?

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MS: Hug, Heart Attack, or NEITHER!

You heard me. Neither! I went blazing into the emergency room and it was neither.

WTH is Takotsubo. Commonly called Broken heart syndrome?

I’ll tell you, it’s something that feels, looks, and sounds like your neighborhood HEART ATTACK.  Which is by definition: blockage in the hearts arteries. Well, like I said on the table…I’m not having a HEART ATTACK! I’m a Vegan! OK, I’m sure there might be a Vegan somewhere in the world that has had a heart attack, but I’m not the one. Let me remind you…I have MS and that is WHY I’m a Vegan. Not that I think my dietary choices will cure MS. I make those choices to put myself in the best possible position of good health, if anything else arises. There will be no clogged arteries, obesity, heart disease, diabetes, etc. So when Mr. Nurse kept barking heart attack…I KNEW HE WAS WRONG!

There was however, the little problem of my lower left ventricle not pumping properly, like there was something blocking it, but there was nothing there. Hell at this rate, I coulda had the cheesecake after all!

MS Hug is a symptom of MS. It presents as much like a heart attack, as the real thing, chest pain and all. The pain can extend around one side or the other, or completely “hugging” the torso. I’ve had this to happen a few times over a three week period, off and on (click here to read that post). The very first time, I sat in my car in a sweaty, breathless, panic. I told myself to relax and that this was NOT a heart attack, it was that “Hug” thing I had heard about. In hindsight…that was a dumb move. What if it had been a heart attack? I told myself that the next time it happened I would go to the emergency room just to be safe. Glad I did.

Now let’s talk Takotsubo. This condition has only been recognized for the past five years. It is stress induced and 90% of all cases are postmenopausal women. Menopause reduces a womans estrogen and estrogen is known toplay a part in protecting the heart. These women now become particularly vulnerable.

There you have it. I experienced Tako…you-know syndrome.

I started asking around. Three women that I know have experienced this and they had no name for it. My general practitioner admitted that she had to look it up. She had never heard of it either.

That’s me…a real Trail-Blazer!

thaufire

Links  to information you may find helpful…I did!

Mayo Clinic-Heart disease in women: Understand disease and symptoms

Mayo Clinic-Hormone replacement therapy and your heart

Comments: Do you know of any women who may have experienced Takotsubo?

Have you experienced an MS Hug? Tell me about it.

 

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MS hug or HEART ATTACK!

MS Hug or Heart Attack?

1:30 Home for lunch,  going back to work.

1:31 Heart pounding, chest pain

unnheart2

Ultrasound of my heart.

1:35 Left arm and hand hurt, radiating pain left from middle of back.

1:36 Pain increasing, using right hand to support left hand for relief.

1:36 Thought …WOW this hurts a lot. I’m okay, relax, take deep breathes. Back to work. Simple afternoon planned. Go.

1:50 Leave for work.

1:54 Nauseous, driving. Pull over. Pain sky rockets, call husband. I’ll be home, take me to the emergency room please.

2:06 Emergency room. Wheelchair.

2:08 E.R. check in, Husband gives insurance information and symptoms, parks car.

2:11 Toddler staring at me from Dads arms. My pain must look very scary to her. I force a smile.

2:12 Enters Rapid Response team. They whisk me away

I HEAR:EKG

I THINK:EKG not invasive. Sticky things on chest. No pain. Pain now …waaay over the top.

I HEAR:Heart Attack, Morphine, Nitroglycerin

I HEAR: Have you had any aspirin today? Swallow these.

I FEEL: Shirt coming off, sticky things going on.

I HEAR: Heart Attack.

I SEE: Husband listening to nurse.

I SAY: What do you mean HEART ATTACK? I’m not having a HEART ATTACK! Honey…this hurts.
I HEAR: You’ll feel better soon, morphine, nitroglycerine, Heart Attack.

I SAY: I can’t be having a heart attack, I’m a VEGAN!

I SEE: Mans unfriendly face close to mine with paper in hand.

I HEAR: SEE THIS! This says, in all ways, you’re a VEGAN having a HEART ATTACK!

I THINK: Screw you.

I SEE: Friendly face very close to mine saying, don’t worry, you’re going to see LOTS of people in the room doing LOTS of different things. It’s okay, just relax.

60 seconds later my clothes evaporate.

I THINK: WTH!

I SEE: My jeans moving toward my feet. No snaps, no buckles, nothing.

I THINK: OMG! But wait…my panties?! What if my period is on?

I SEE: Panties floating away, still inside jeans. No period. Thank you GEEZUS! Hello menopause.

I HEAR: Arteries blocked/ look inside/ heart working? Heart attack

I SAY: How?

I HEAR: Catheter/ groin/ artery/ heart/ look.

I THINK: Chest/sternum/ not cracked open /okay.

I SEE: New face, friendly, close to mine.

I HEAR: I’m Scott. I’ll be your bartender for the rest of the day.

I THINK: Morphine. Smile.

I SEE: I’m covered with a sheet.

I FEEL: Levitated.

I SEE: My toes, my husband, Scott, random people in hallway.

I SAY: My toes are really pretty. Honey, I need a toe ring.

I HEAR: Nothing.

I Feel: No pain.

heart. cathetermed

Can you see the catheter in my heart? The hook. Look closer. AWESOME

MS HUG or HEART ATTACK

Comments:

Have you ever experienced either?

What do YOU think it was?

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MS: You make me wanna “Sweat Like A Girl”!

A few weeks ago, I went to a very nice dinner hosted by Gilenya at “The Marble Head Chowder House”. A Neurologist and MS Specialist spoke for a short time about MS and then for an even shorter time about one of the new disease modifying therapies, Gilenya. It’s a pill that has pretty much the same efficacy as all the others pills, however it’s one pill a day, not two.

For half of a second my interest was peaked, and then they mentioned its heart concerns and the special care that must be given when first taking the drug.

Hmmmm, maybe not :/

If it ain’t broke, don’t fix it. Sure my Tecfidera is twice a day but I’ve had zero side effects and if I did, heart health would not be one of them.

I did however, meet some really nice people. There were sisters who both have MS; talk about partners in crime. Another woman who brought her 2 siblings so that they could have a better understanding of the disease; I can’t take ALL of my siblings anywhere all at once, it’s too embarrassing. There was one other woman who like me, brought her husband. That couple talked a lot about Hippotherapy which I found fascinating. They convinced me that it was beneficial! I wish I could convince my Insurance Carrier of that.

All in all we had a great night! I think we should get together again and have a mini support group. Next time we should meet somewhere more exciting…I dont know, maybe for a class at “Sweat Like A Girl”. It looks like fun. I’ll let you know how it turns out.

We_Can_Do_It!Comments:

 

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MS: Let’s talk about Mental illness…mine.

Today I want to write about mental illness… my own.

Anyone who knows me, just a little would use these words to describe me: happy, cheerful, and never stressed. My husband calls me his “optimism”.

Is this the face of depression? Look again.

Is this the face of depression? Look again.

He also says I can be a “Pit Viper”.

I’ve suffered off and on with depression since 1997. I know what I’m talking about. Not sad or a little down but, depressed. During these years, I raised two children, maintained a healthy marriage and taught school. How? You ask. With the help of my big sister who suggested (insisted) that I, at a very young age, twenty-two to be exact, go to a clinical Psychologist. “GO!” She said. “Just trust me and GO!”

She didn’t explain how it would make my life better, but assured me that it would. She was right. I was exhibiting signs of depression then and she saw it. My psychologist helped me to have a deeper understanding of myself and how certain depressed feelings could be affecting the choices that I made. Not his job to judge my choices or to change them, just to help me make the connection between my depressed feelings and my choices; after all, I did have free will. Looking back, he never even used the word depressed. I was young and he was good. No stigma, no darkness, no shame.

This was unheard of in the deeply southern black community from which I had come. This was and still is taboo. Suggested remedies would have been; go to church, pray harder.

Mental health just doesn’t work that way. Neither does dental health. You could no sooner pray away depression than you could pray away a cavity. We do best when we pray and use the resources we’ve been given. Abandoning my Southern Baptist upbringing was not necessary but being open to other things, was.

Mental Health needs to be dealt with aggressively, like Cancer. We pray…yes, but we also use Chemo when we need it. Is there any shame in that? No.

What did help me? Exercise, Mindfulness Meditation, journaling, therapy and years later…medicine.

Managing all of these in the name of depression also gave me a great defense mechanism against stress, which causes my MS to be more active. I can never really separate these things; MS and depression and stress.

The larger point of this post is: a few days ago a beautiful young brown girl, Karyn Washington, only twenty-two years old to be exact, committed suicide.karyn-washington-http://www.cosmopolitan.com/celebrity/news/karyn-washington-suicide

Karen was the creator and founder of “For Brown Girls”, http://www.forbrowngirls.com/, an online inspirational blog which was there for other girls, an undertaking well beyond her years. Her mother recently died of cancer.

She was a gift.

I wish she had had a big sister like mine; or an Auntie, a Teacher, a Minister, a Friend …a STRANGER who cared enough to say “GO! Just trust me and GO to a psychologist”! Someone who understood what was happening and could take the ridicule. There is no shame in that.

There is shame however in letting our ignorance and fear cause us to lose even one more precious gift. We need to open up. Talk about mental health and suicide. Talking about it doesn’t make it happen, just the opposite, it prevents it.

Helpful Links:

New York Times Article: Suicide Prevention sheds Light on Longstanding Taboo.

National Suicide Prevention Lifeline

Depression and Chronic Illness

Psychology Today Magazine

Please share your thoughts and experiences:

 

 

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MS: De-stress strategies when you are a TEN

My stress level this morning on a scale of one to ten, was a TEN!
I’m happy to say that I knocked it out of the park! I can’t control how much stress comes my way but, I can control how I respond.Black-woman-meditating1 Do I internalize it, or not? Honestly, in some cases, stress does break through. Usually family stuff, but even that is better controlled with strategies. But work? I don’t think so!
So, what did I do after a horrible morning? When asked to stay extra time (because it would look good to my employer) I said yes, then gave it a second thought, and said, no. I recognized that I was already a TEN and knew that going home to decompress would be smarter. I then drove home, sat in the garage and talked to my husband (who was at work) for 10 minutes about my morning. Talk therapy and support. I eventually came inside the house, and now this…writing.journal50019628_n I had actually written this in my head, while sitting in the car decompressing. Once this is written I’ll do 30 minutes of Mindfulness Meditation, eat lunch, take a nap and head back to work, making sure to stop for a frappaccino on the way.

COMMENTS: What would bring you down from a TEN?

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Van Gogh sucked too!

Anyone great at anything probably “sucked” at first. Take Vincent Van Gogh, he only sold one painting before he died.van-gogh-starry-nights-1There’s Michael Jordan, Bill Gates, Oprah Winfrey,  Jay Z and…me:) Have faith in yourself if no one else does.

When I took my first Biology class in college, I got an “F”. It never occurred to me to change my major. I don’t even remember thinking there was anything wrong:/ Not with me anyway. As an elementary school substitute teacher, I told a class that they had, “really pissed me off”. How was I supposed to know that wasn’t okay to say? They HAD! The principal let me in on a secret, “you can’t DO THAT!”. That’s when parents call. I found other ways to say LOTS of things. Now, I kinda suck at learning the complete map of Easton so I can deliver these kids safely home on the school bus. I’m working on it. I’m gonna try looking at it as another human body system, like the muscular system or the respiratory system. I’ll think of it in terms of something that I’m more comfortable with…not a MAP. I’ll be sure though not to tell the rowdy little buggers on board, to sit down and be quiet…you’ve pissed me off. I’ll say, ” I’m concerned about your safety, you should sit down, cuz if we crash…you’re gonna DIE!” Better?

Comments: What have you gotten better at over time, and you were terrible in the beginning?

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