Rising Tides....

Typically I am a beach lover. There is nothing more soothing than the sounds of gentle waves as they wash ashore, the calming breeze coming in off the water, the unobstructed rays as the sun warms and tans the skin. The beach is such a magical place. But have you ever thought how it must feel to be a grain of sand? Today I am sand and the tides are not being so gentle. Follow me on the journey. Being metaphorically reduced to a grain of sand everything becomes larger than life. Looming overhead, overwhelming and quite frightening. I am swept up and taken whichever way the wind blows. Only to be deposited somewhere else unfamiliar to me. At any moment I can be crushed beneath the power of someone’s feet as they tread upon me on their life’s journey. Oh wait! Now I am to be scooped up in someone’s pail only to be shaped and molded into what they would like for me to be. Now, for the unforeseen – the tide. It rises and falls at its whim. Just when I think one wave has subsided, I am hit by another. And in the midst of a storm I am bombarded unmercifully by crashing waves, one after another. Each more powerful than the one before. And just when I begin to cry out “WHY?!”…..complete silence. The calm after the storm. I am sand and MS is my wave. Today I am sand. Tomorrow…..complete silence. The calm after the storm.

S SQAURED

There are a few things that prompted me to blog this beautiful spring day. The first being that I am so truly grateful on this Easter Sunday. You see April 4^th is not only Resurrection Day but April is also my 1 year anniversary since being diagnosed with MS. My pastor this morning preached a sermon on the resurrection as most did but he preached from the last book of John in a manner in which I had never heard before or just spoke so directly to me that it was as if I heard it for the first time. As I am no bible scholar I will paraphrase as best I can so you get the jest of my motivation. In John 21 Jesus appeared to the disciples for the third time. They had returned to fishing and had spent all night fishing to no avail. In the morning Jesus appeared on the shore and asked if they had caught anything. They replied no. He told them to cast their nets to the “right” side and their net became full but did not break. Now, I am not sure if Jesus meant “right” in the literal sense of left to right or “right” in terms of correctness. In this instance I believe either applies. As my pastor went on to explain everyone is “fishing” for something. We are all in search of security, significance, pleasure, comfort, companionship whatever you’re “fishing” for takes the skills of a true fisherman. Those would be patience, as waiting is in the fishing; faith as you hope that when you cast out your line into deep dark waters that there is something below that will attach itself to the “bait” you have set. As my pastor broke down this analogy of “fishing” in the literal sense it became apparent to me that my “net” had been cast. And I did NOT catch what I anticipated. But to understand what I had caught I had to have a faith in something higher than my own understanding to appreciate the true value of my bounty. Today I GET IT! My net = MULTIPLE SCLEROSIS. Yes. What I caught? MY LIFE. You see, as I have said before we give the monster so much power in our lives. I’m not naive. I know there will be days that the monster will win. I have had those over the past week or so (I’m currently on a round on steroids). But we give up the whole dang war on day one! Wars are fought and won one battle at a time. And I lose that perspective daily. Everyone has a cross to bear and MS may be ours but the story says Jesus rose on the third day. So we too have resurrective power. In MS I found my cross but I also found my “catch”. To appreciate the life I have. To live it as I am destined to live. To give as much as I can give to others and most importantly to myself. To not forget that I may lose the battle tomorrow so I better have a strategy for the war, today. To laugh til it makes me pee (those with bladder control issues find that especially humorous). To taste and savor life one heaping spoonful at a time…..[add your own “to’s” here]

So as I crafted this blog post in my head as I had a lovely spring stroll today I was thankful and blessed and optimistic and hopeful and for the first time in many many moths faithful. You see Jesus is on the shore and He already has a meal prepared. We just have to have faith and trust to cast our nets to the “right” side. J

As I did today I encourage no I charge you to find what you are fishing for. Have faith and blindly cast your net to the “right” side. No worries – He WILL fill it. I have a new mantra for this spring, S SQAURED = Spring Stroll: where I connect my sole to soul; my soles to the pavement and my soul to God. I will implement this time to connect the two things that are paramount to my war with the monster – my ability to keep moving and my faith to do so. At least until it gets too hot for me to walk and my increased body temperature makes me exhibit pseudo symptoms. Lol blasted monster!

Still the same....AND a little better

The other day I got an email from a friend asking how I had been feeling lately. My friend said “…..don’t get me wrong, you look great. You don’t look any different to me.”. I always appreciate compliments telling me how fabulous I am but what did you really expect me to look like? Does being diagnosed with MS mean I am instantaneously going to morph into some sort of mystical creature? I know my friend by no means meant to be offensive and honestly I wasn’t offended. It just never ceases to amaze me society’s perception of the affects of our precious little disease. Like many other chronic diseases, symptoms are not always visible. So yes, I’m still the same and in a lot of ways a little better. I stress less, laugh more, eat healthier, exercise -sometimes :) and have an overall healthier life balance. So as far as diseases go I guess having MS isn’t the worst thing that could happen. It forced me to put things in my life into proper perspective and it gets me unsolicited compliments. Because “don’t get me wrong”, I still look great!

ROLLING RIGHT ALONG

Sometimes we as MSers get caught up in the depression of this unpredictable disease. Sometimes we get angry, feeling that the monster within systematically and silently robs us of our quality of life. How dare you invade my body. Take up residence as if someone granted you dominion over all that is me! Sound familiar? I have those internal rantings often. Especially when I have reached my irritation quota for the day and want to take my injection needle and shove it where the sun don’t shine of some unsuspecting support person who tells one more time “it doesn’t hurt that bad”. I know, overkill. But then there are days when you meet someone who makes you feel like a complete self absorbed boob for wallowing in your own MS-induced pity party. This past Saturday was one of those days. I had the pleasure on running into a girlfriend I had not seen in years. We did the usual catch up , how’s the kids, how’s the husbands, how’s work, the parents, etc etc. She then mentioned that she had had another daughter since we last spoke. Oh wow! Let me see a picture – normal response right? As she sorted through the many family photos in her super-high tech cell phone she casually mentioned that her beautiful little girl was born with Down Syndrome and congestive heart failure that required open heart surgery at 3 months of age! As a mother my heart instantly ached. How do you endure seeing your precious little bundle being subjected to the poking and prodding that we as MSers know comes with testing for any type of disease. Thankfully they have been blessed. Her surgery was a complete success and she is as active and rambunctious as any little seven year old. Hearing the thankfulllness in her voice and seeing the love on her face as she shared her adorable family photos was infectious. It literally permeated my spirit. And made me realize that no matter how much I dislike the monster within I am so absolutely blessed. Even the day when I may be bound to me bedazzled scooter (oh, you know I will have a fabulously divalicious pink glittered scooter lol) I will still count my blessings. My long lost girlfriend reaffirmed in me that yes, there will be bad days. There may even be absolutely monstrously nightmarish days but I will still be here. Living to enjoy another day on this beautiful green Earth. Besides, even if one day I am unable to walk hot shoes look equally as hot sitting down. LOL

"From the Stiletto Files"....

As many of you may know, and some of you may not, I am the co-host of an Internet radio Show – Paper Dolls. And this week, like many others, we are having a guest appear on the program. Now, this in itself is not some sort of miraculous feat. However, the impact this guest has had on me (and she hasn’t even been on the show yet – we air Wednesdays at 10pm EST - yes, shameless plug) has been quite profound. You see, the author is Carole Brody Fleet. And her book is Widows Wear Stilettos. Aside from the shoe reference, why would I so strongly relate? Yes, I do strive for a “mean shoe game”. But no, I’m not a widow. What resonates so profoundly with me as I read her book is how relatable her sense of loss is to me. I questioned why I was so moved by such an unfamiliar experience. Then it dawned on me. The initial feelings she described were so “like me”. Although not equal, definitely relatable – the sense of loss you feel when you are initially diagnosed with MS. The feelings of hopelessness, irritability, anger, confusion, anxiety, worthlessness, her list goes on and I agreed with every single solitary emotion. I’ve been there. And if you’re like me….you have too.


But more importantly than the ability to relate to someone that shares my sense of loss without me having to go through the frustrating tale of how and why I feel the way I do. Why at any given moment I may swing on the pendulum on emotion like a monkey on a vine – from anger to a fit of snot rolling, uncontrollable sobs. She just gets it. And she pens it in a voice that echoes the vision on this blog. It is not to dismiss the tragedy but to encourage the healing. The sense of loss may forever resonate in your heart but it does not have to be the musical soundtrack of your life. With time you will be able to smile, laugh and live again - in a different capacity? Yes. With as much joy? You bet. As Mark Twain so eloquently put it “Dance like nobody's watching; love like you've never been hurt. Sing like nobody's listening; live like it's heaven on earth.” And do it all in a pair kick-ass of stilettos - I added that part :)

Never Stop Dreaming

I was at a loss of what to post today but knew something was stirring in my soul. I couldn't quite pinpoint it and then I received this amazing email from my BFF (aka Style Mayvin) and thought EUREKA! This is what all the soul stirring was about. Way to often we as women continually have our "dreams deferred" out of obligation, gender roles, fear, etc - you fill in the blank. Then when you compound that with MS, you think that you are no longer allowed to dream. That somehow the monster has dominion over all things good and beautiful. But dreams are like fairy tales. And don't fairytales always have some knight in shining armor that slays the dragon (aka monster) and we all have a happy ending? Well today here is your happy ending...enjoy!

"I read this today on Dr Wayne Dyer's Blog and wanted to share...

Dream and You Shall Become

True imagination is not fanciful daydreaming; it is fire from heaven.— Ernest Holmes

One of the huge imbalances in life is the disparity between your daily existence, with its routines and habits, and the dream you have within yourself of some extraordinarily satisfying way of living. Buried within you is an unlimited capacity for creation that’s anxious to plant seedlings to fulfill your dreams and your destiny. The absence of balance between dreams and daily routine can reveal itself in symptoms of depression, illness, or anxiety—but it’s more often something that feels like an unwelcome companion by your side, which continually whispers to you that you’re ignoring something. You sense that there’s a higher agenda; your way of life and your reason for life are out of balance. Until you pay attention, this subtle visitor will continue to prod you to regain your equilibrium.

When you live your life going through the motions, it may seem to be convenient, but the weight of your dissatisfaction creates a huge imbalance in the only life you have now. It shows up when you’re sound asleep and your dreams are filled with reminders of what you’d love to be, but you wake and return to pursuing your safe routine. Allow yourself to think about this “fire from heaven.” What are your dreams and how can you shift your thinking habits to match your dreams? Commit to thinking about what you want, rather than how impossible or difficult that dream may seem. Give your personal dreams a place to hang out so that you can see them in your imagination and they can soak up the energy they deserve. Thoughts are mental energy; they’re the currency that you have to attract what you desire. Learn to stop spending that currency on thoughts you don’t want. Your body might continue, for a while, to stay where it’s been trained to be, but meanwhile, your thoughts are being aligned with your dreams. Align your inner creative energy—your thoughts—so that they match up perfectly with your desires. Dream and you shall become.


Have a great week Dreamers..."

A Slippery Slope

What do you get when you mix the imbalance accompanied by MS, 3" heels, and ice? A hot mess! There are days and then there are days...today was a "day". Most of you have heard by now about the wintery weather we have encountered in the Southeast (which we are not equipped to handle). So on top of the snow day on Monday, two-hour school delay this morning, and remnants of snowy-slushy icy mess - you have me trying as best I can to make it up the hill in my development. Today is the day I decide in an effort to conserve gas to let my husband drive the truck. Yes, I agree - dumb move. They tell you about "black ice" but I always attribute that to the highways and by-ways of the interstate - not residential streets. Well, it applies. I thought I could make it up the hill if I stayed in the paths made by the brave drivers that went before me. NOT! My poor little sedan sounded like the little engine that could..."I think I can, I think I can.." Until she died. Who knew that if your vehicle continues to spin its wheels to no avail it just cuts slam off ( a metaphor of life, no?) Well, I didn't know this - my husband informs me that it is so you don't burn out your pistons or something of the such - I no speak man-ese. At any rate, as I frantically get off the call with my BFF in an attempt to try to gain some traction - she dies again! Last resort - WALK! Did I mention 3" heels. These are my fave leather winter boots people that are now gonna be succumbed to a winter concoction of oil, slush and snow - yum :) Leather just drinks this sort of liquid bile up. To further enhance the situation, my balance is slightly skewed to the left and I have an arm full of work that I brought home. Yeah, extra weight - not helping. As I trudge up the hill I loose my footing once or twice so I decide to try to use my heels as spikes to dig into the snow/ice (I recently saw an episode on ice climbing on the Discovery Channel). This doesn't work very well if you have no traction to begin with to "stab" the ice. So as I look like a baby taking her first steps, I fumble my way up the hill avoiding a rather embarrassing spill as night begins to fall and I pray that some other "brave" driver doesn't come down the hill and conveniently assist me back down the hill by way of their front bumper. So yes, I finally make it home to frantic phone calls form my hubby and a text message from my BFF wondering if I have braved the slippery slope. I made it but next time...I'm just gonna wait for my hubby to get home, or pack sensible shoes. Heels+Ice+MS=Not a good look

Today is the day....

There are days when you get your fill of your friends and family trying to tell you how to manage your disease. And if you are anything Like Me then today is your day. I know that their efforts are purely out of concern, fear, and my overall well being. I completely get that. Honestly I do. Their concern comes from the purest place. The extra effort they put in to find research and keep abreast of the latest treatment options and developments in medications...it's exhaustive. But they never stop trying. Never stop caring. Never stop pushing. Until I push back. The days when I am irritable and angry at my symptoms. When I can't find anything comparable to make you understand how this numbness or vibration feels. It's one of those true "you had to be there" type events. The days when I'm afraid and I don't want you to ease my fears. I don’t want you to tell me it will "be alright". Because at this moment, at this every second IT'S NOT ALRIGHT!


My worse moments are early in the morning. When my body is still fatigued and it vibrates like a tuning fork and my husband constantly tells me to "slow down", "you getup to fast", "you're always moving". Ok, let's stop right there. Always moving? Doesn't he know that is the thing I am fighting every single day to continue doing. The day I stop moving is the day the sleeping monster within wins. Stop moving? Not an option. Those are the days I push back. And push back with a vengeance. Those are the days I am determined to not let this disease alter my life, my behavior, my routine, my anything. The more I keep things the way they were BD the more it seems like there is no sleeping monster within.

Then there was today. I mentally planned to get an early start. And I mean early, like 3 am. Ok, needless to say that didn't work. What was waiting for me on the other side of 3 am were the twins: imbalance and vibration. Yeah, not all babies are cute. I no likey them so much. So, I slept some more. Now it's 5 am and I really need to my day moving. But apparently the twins were having a restless night and I couldn't slip by them. They were wide awake and waiting on me. In that moment, just when I was about to succumb to their antics I heard my husband's voice "you move too fast". You see, I'm a wake up hit the ground running type of chic. When I'm moving I'm moving full speed ahead. I have everything down to a timetable. If you ask me what time will I be downstairs and have breakfast on the table for the girls if I get up at 6 am I will tell you exactly 6:09 am. Everything is timed to the minute, to maximize efficiency. I can't help it. It's my analytical brain. I'm a professionally trained problem solver. It is my job to take an issue break it down into multiple "mini-tasks" then analyze the best plan of attack to reach the highest probability of a resolution. I know, too much right? I'm sorry it's genetic or something. Actually maybe not, my mom claims she doesn't know whose child I am. The difficulty in this type of thinking is that I can't break down the disease. It is greater than the sum of its parts. Or so I thought. Until I heard his voice "you move too fast". So I didn't. I first opened one eye, then the other. Then I just laid there and let myself just be for about five minutes. Then I sat up slowly placing my feet on the floor. And got up. WITHOUT THE TWINS! Apparently, the lack of sudden movement or the peace with which I began my day lulled them asleep. Whatever it was, this was one thing I choose not to analyze.

So today is the day. The day I chose to not push back but to embrace the love, care, and concern of my family. Because if your Like Me....today is the day you needed it.

Like Me...

Let me tell you my stroy. A year ago I was diagnosed with Multiple Sclerosis. Not such a revelation since I started this blog as a means of support for those with MS. The story happens BD (before diagnosis). You see, I was that chic - the one from the outside that seemes to be "making it happen". The kids, the husband, the demanding career, the busy schedule. Yeah, you know her too? Like most, I experienced symptoms BD. The dizziness, blurred vision, imbalance, sensitivity to sound - sound familiar? The things that would make a normal person stop and take notice. Not me. It started around 4:30am as I began what was to be yet another long work day. At this point I was averaging between 55 and 60 hours a week. I noticed as I went to spit after brushing my teeth I made the funniest zerbert sound (is that a word? - you know what I mean) At that time I just laughed it off as dilerium at that obscene hour in the morning and went about my day. Next day -- 4:30am, same thing. Again, I laughed and went about my day. Day three -- yes, day three! Same story, a little concern creeps in but I dismiss it. Later that day while laughing with a co-worker I notice my smile doesn't feel quite the same. I go to the ladies room to look at my gorgeousness - ok, not so cute. One side of my face does not react. What the_____! (you can fill in the blank) Yes, you can scream at me that it took me three days of having the entire right side of my face being paralyzed to become a concern (in retrospect I feel the same way). But herein lies the story. I still did not consult a doctor. Because even though I knew what was happening wasn't right, I had attributed the dizziness, blurred vision, imbalance, and fatigue to being over-worked or the fact that I am anemic and had not been eating properly. The paralysis I didn't know what that was about but I had a project deadline and going to the doctor just didn't fit into my schdule. So yes, I walked around for an entire week with the right side of my face completely paralyzed. I just covered my mouth when I spoke or didn't look people directly in the eye. My husband didn't even know. Because I had work to do, I would worry about me later. Thankfully the paralysis was temporary and I finally did go to the doctor. Who also infomred me that I was crazy to walk around for a week with a paralyzed face. The rest, you know -- tests, MRI's, consultations, diagnosis. Fast forward to now....why did I create this blog? Because I know there are other stiletto clad fashionista, go-getters out there LIKE ME. There is an exhaustive amount of information out there in regards to MS, treatment options, research and diagnosis. If you are in search of that type of information check out some of my links, but this is not the blog for that. I'm not a doctor, researcher nor do I have any experience in the medical field. I am a wife, mother, and career woman making it happen, similar to other women Like Me. Yes, I was diagnosed with MS. But I am not MS. My neurologist told me at the time of diagnos that the prognosis they used to give newly diagnosed patients was that within ten years they would be disabled. And to be honest, that is all I can remember him saying during that initial conversation. In my mind it went sorta like this "You have Multiple Sclerosis, womp, womp, womp, womp (like Charlie Brown's teacher) womp , womp, womp, you may be disabled....screeecchhhh - put on the brakes! (yes I think/type in sound effects) That is when I received clarification on that statement. Bottom line, whether that is or is not the prognosis, #1 I'm too cute to be disabled :) and #2 if I only have ten years living this quality of life as I know it, then it's time to make some changes. Because if I only have ten years left this is going to be the PERFECT 10! So, join the journey with me. This blog is for all of the women out there who have MS but are not MS. The women who are still looking to "make it happen" but maybe with a more realistic balance. For the women who are not consumed with letting MS define their lives but acknowledge we may need to make a few alterations to enhance our lives. It's like the perfect little black dress. It fits amazing but if it was just a little tighter right here it would be oh, that much better. So let's consider MS your little black dress and let's consider this blog your run into the city to see that seamstress on the corner of destiny and courage (fill in the blanks with your words of inspiration). Because I'm trying to rock my little black dress and matching leopard print stilettos for as long as I can. And, if you're reading this blog then you're...just LIKE ME!