That One Day When…Wednesday

Ahh, Wednesday. The day I get to feel what I hide on every other day. Every other day, I wake with a smile while the beast runs wild in my body. I cannot let on to the activities that take place on the inside. Mainly because I don’t want the beast to think she is winning, but also because I don’t want people to feel sorry for me.

Every other day, I apply my happy face, pull up my big girl pants and skip my way through my very full day of teaching my Pre-K class. A room full of 4-and 5-year-olds has a way of infusing life into this weary soul! We skip, hop, jump, paint, write and learn until we drop. Rejuvenation for my babies, as I call them, at the sight of mommy and daddy. Near collapse for me, but I smile on my way out the door, ready for my half-hour drive home, where I barely make it out of my car and up the stairs to my refuge.

My loving perpetual fiance, Robert, usually has coffee ready, and a warm hug to make it all better.

Those days are Monday, Tuesday, Thursday and Friday. Oh, but Wednesday. Wednesday I get to lie in bed and rest. I give in to my fatigue. I allow the beast to wreak its havoc because on Wednesday, I don’t have to fight. On Wednesday, I rest. I write. I binge Netflix. I win.

 

That One Day When I Fell and Realized (again) That Oh Yeah, I have MS

So I fell today. I was heading to the bathroom to get ready for work and my legs just quit working. They just quit. I am hard-headed, stubborn and hate telling myself, “No.” Here’s my cycle: I find a perfect job that accomodates the limits I am in denial about, I push myself beyond my boundaries, my body steps in and whispers, “Erica, slow down,” to which I answer, “I’m good.”

Kristen Bell Laugh to a Cry

I’m not in any way shape or form, ‘good’. I may be okay, but not good. I kinda knew it would be one of those days when my alarm went off and I could barely move to turn it off. I really knew it would be one of those days when I was still in bed when my love returned from his shower. I really, really knew when after my love left for work, I used all my 2 ounces of energy to kick off the covers and stumble to the bathroom–to get ready for work. Really? I mean, I know the signs, elbow braces, wrist and hand braces, knee braces, extra doses of meds, but my stubborness gets the best of me. I made it to the door of our bedroom, took one more step and crumpled soundlessly to the floor. My legs just quit. My body feels like it’s carrying a ton of gold bricks from Fort Knox. I just lay there contemplating my next “move” (I use that term loosely). Should I go back to bed or go ahead and shower for work?

dead

You already know what I chose. I finished my “walk” to the bathroom, went potty and perhaps the weight of the liquid in my bladder was part of the reason I couldn’t make logical decisions, but once I lost those ounces, I thought clearly and went back to bed. Very carefully. I informed my bosses of what happened and that I would not be in today. But then my stupidity kicked back in and added that maybe if I rest, I could come in later. “ERICA, WHAT?!” Is what my body screamed. “Yep!” I replied, “If I sleep a couple more hours, I should be okay.” Umm, no, that is not realistic, but try telling that to the stupid side of my brain.

Ha Ha Nice One!

Here’s the thing, People don’t understand this beast, especially if you are a ‘put on a happy face’ kind of person like I am. I can be in incomprehensible pain, but smile and laugh with you. Some people can see it in my eyes, but others take the smile and laughter and assume I am ok and that MS is not that bad. Take note. MS is that bad. MS doesn’t give you a heads up before it takes from you. It doesn’t let you plan for a bad day. It even gives you false hope when you have a good day. Such a spiteful beast, but I refuse to give in. Although, after today, I may submit– just a little.

That One Day When I Explained What I Mean When I Say, ‘It’s a Good Day’

So many sweet people who know I have MS ask me how I am feeling or how I am doing. “Super Duper” is my usual reply, because no matter how I am feeling physically, I am usually super duper mentally. But some days, I am closer to honest. “How are you today, Erica?” someone will ask. “I’m okay,” I’ll reply, which usually means I feel terrible.
Terrible for me means spastic, or tight, muscles in my legs, making me feel like I am dragging 8 ton weights, muscle spasms in those same legs, bear paws, which allow me to grasp…absolutely nothing without dropping it one hundred thousand times and then desperately trying to pick up said item…with said bear paws, fatigue that makes me have to drag my eyelids open, and with that same strength, drag myself out of bed and into the shower.
After I shower, I take a rest on my bed as I picture in my head what is in my closet because I can’t actually stand long enough to look at my clothes in real life. I usually select a long dress to hide the compression sleeves on my knees and thighs because of the joint pain that is not responding to any pain medication.
I also have compression sleeves for my wrists/hands, ankles, shoulders and elbows. My perpetual fiancee, Robert, says it looks like I am about to engage in a volleyball game when I wear them all of them around the house (you can only hide so many compression sleeves in the summer without risking heat stroke).
But, when it’s a good day, it’s a really good day. No compression sleeves (well maybe one), my legs feel like they only weigh 4 tons instead of 8, I wake right up and don’t have to drag myself out of bed. I can actually stand in front of my clothes in the closet and choose a cute short dress, the pain meds I take every day actually work on this good day. I can enjoy activities and walk without assistance. I can still feel those muscle spasms, but they are not nearly as aggressive.
Esmeralda (my MS) is always there. Sometimes she stays in the shadows (a good day), but most times, she is front and center (I just try to ignore her and not let her steal my joy). Today has been a good day. I have been able to rest and prepare myself for tomorrow. When I know I have commitments, I rest and take care so that I can be my very best. I won’t know until my alarm plays its beautiful cello music in the morning whether it will be a good or an okay day, but I’ll be ready…come what may.

 

That One Day When I Wrote a Short Story

I wrote a short story that I published as a book on Amazon and haven’t shared it on my blog! What in heaven’s name is wrong with me?? It’s called 62 Days and it’s a little story about my mom, my dad, me and the unknowns of life. A tiny peek into my childhood and a journey to forgiveness. You can find it here.

Thank you for stopping by! I hope you download the book and that it helps you if you are on a journey of rejection and forgiveness.

That One Day When the Endings Were Possibless.

I have officially graduated to real MS. What I mean by that is, I dreamed a dream in the language of MS. It was funny, really, but at the same time, sobering. When you have MS, the wires in your brain short-circuit and wreak so much havoc in your body. So much. It can cause walking issues, because the message your brain is sending to move gets discombobulated and lost in translation to your moving parts. Words get stuck between your brain and your mouth. Kind of like aging, but on high dose steroids.
The last time I dreamed in another language, it was Spanish. My Puerto Rican maestra was so excited when I came to school my junior year of high school and shared with her that I’d had a dream, and it was all in Spanish. She said with tears in her eyes, “It is in your soul, now.” I grinned from ear to ear. Spanish was a part of me, and that was very cool.
This time, I am not as excited. The language of MS is not a language in which I want fluency. No, not at all. I didn’t realize until the other night, that in the 3 years since I was diagnosed with MS, I have never had it in my dreams. Until Friday.
The dream was weird to begin with. I mean I was babysitting. Infants. Really? I barely walk myself most days, and I dreamed of giving care to infants? Ridiculous. Anyway, the parents came to pick up their babies and one couple was evidently friends of mine and Robert’s. Well, I forgot her name. Someone I see every day. A friend of mine, and I forgot her name. That was the moment I realized I was dreaming in MS. I said incredulously, “Please remind me of your name.” Like she was a stranger I had only met a time or two.
Well, her husband jumps in and starts naming funny nicknames (perhaps to put me at ease?) and I join in the banter. We do this back and forth for a few seconds and I end the laugh fest with, “So many names, the endings are possibless.”
I jerk awake completely mortified. The endings are possibless?! My mind said the possibilities are endless, but my mouth completely jacked that up. In real life, that happens to me more often than I like to admit. But then I laugh. I laugh and laugh. I share with Robert who chuckles and says, “So now you dream in MS?”
I laugh some more and reply, “I guess I do.” Damn it. It’s in my soul now. It is a part of me. And it is not so cool. But in the wake of this mess, I choose life. I choose to find the funny and run with it. Well, walk really fast with my very cute walker, anyway.

That One Day When I Just Didn’t Care

It didn’t happen overnight. I have always been happy and able to see the bright side of just about any situation. But, I nickled and dimed my happiness until it was gone. And I didn’t realize it. When I look back over the past several months, I can see where I slowly withdrew from people. From doing the things that I loved. Telling myself I was just tired. Excusing my actions, blaming them on MS.
Truthfully, maybe I need to be out of the clouds. To see my life for what it is and not for what I want it to be. I have a debilitating disease that continually attacks my body. There is nothing pretty about it, though for 2 years, I have tried to pretty it up. Maybe I thought if I stayed positive, I wouldn’t be affected by it. Silly me. I am affected. Daily. It is no fun watching your body deteriorate before your eyes. Yet, I smile. It is no fun being unable to see a bright future. Or, trying to plan around a disease that plays hide and seek. Yet, I smile.
Here’s the funny-not-so-funny part. I can braid my hair and type all day on my laptop, but I can barely hold a cup or pick up my phone. I can run or ride a bike one day, and the next, I need a walker to get from my bedroom to the bathroom. In all these things, I smile.
I try to see the good in everything, even the nonsensical things that MS causes, but today, I am tired. I am so tired. My happiness bank is overdrawn and I don’t know how to refill it. I am lost. And I just don’t care.

That One Day When I Saw the Glass for What it Was

Life comes at you in waves. Sometimes they’re the good waves, ones you can ride a boogie board into eternity on. Then there are the duds. The waves that pooter out before they make it to shore. These are the waves of reality. The kind of wave I’m riding on today.
I am normally, well, I used to be a ‘glass half full’ kind of gal. Now, I am a ‘at least there’s something in the glass’ realistic woman. That is not to say that I am not positive. I am just more realistic. I see the glass for what it is. A receptacle to hold juice or water, or in a pinch, a bunch of fruit snacks.
I am having the kind of day where I ponder the meaning of life in the shower. In those precious moments when the water is scalding my skin, I think, “Wow, my body is eating away at parts of itself and there’s nothing I can do to stop it.” Yeah, that kind of wave.
Suddenly, I am in the future where all my biggest fears reside. I am no longer independent. I can no longer walk or form a coherent sentence. I am sad. Pooter wave. But, on the horizon, I see the biggest boogie board wave imaginable! I am no longer sad, because the One on whom I depend has sent me an incredible person. Years before I needed him. Willing to do whatever needs to be done to make me feel as independent as I can. He doesn’t make me feel bad for the betrayal my body has crashed upon me. “I knew this was coming. I have been preparing for a long time. Let me love you.”
The One speaks through my love. He assures me that this was part of the plan all along. He knew I could handle it. He knew he had given me the strength to ride the wave.
Back in the present, I am still independent. I can still walk (even run sometimes). I have amazing friends and family. I have my love. I am thankful for the glass just the way it is.