GUILTY BY ASSOCIATION

At last check, I was the one diagnosed with Multiple Sclerosis, not my husband, not our daughters, not my mother, my father, my best friends, my cousins, my aunts, uncles or any of my friends and family. Yet for some reason, that for the life of me I cannot wrap my head around, the powers that be are bound and determined to make those around me suffer. Guilty by association. It isn't as if they have not made it difficult enough for us to live and treat this MonSter. They made it difficult enough for us to obtain health care (some who shall remain nameless, would like to see us without)…astronomical premiums, waiting periods of disease modifying therapies, loop holes, red tape, pre-qualifications…it is really enough to make a big girl cry. And now to add some high-calorie icing to the proverbial cake they deny you the right to purchase short-term disability and life insurance? So if I understand correctly, after you have attempted to make my life even more difficult to navigate as a person living with this unpredictable disease you thought it would be a swell idea to keep the party going by impacting the quality of life of all those around me…just for kicks and giggles? Well, let me be clear on what I would like to kick and how much it would truly make me giggle!

Are we not deserving of the same benefits that the rest of the population is entitled to? At what point did I become less of a human, less of a mother, less of a provider? The day I was diagnosed? Did you not think that I too might want to spare my friends and family any further financial burdens on the off chance that this disease gets the better of me? There is also the off chance that I could get hit by a bus but prior to 2009 that whole bus smashing scenario didn't bother you so much. One of the biggest issues those with MS face is the guilt associated with the possibility of becoming a burden to their family, both physically and financially. Please believe, we do not need anything else to feel guilty about. I thought we were all endowed with certain unalienable rights? I suppose MS stripped me of my myelin and my rights in one fail swoop…the MRI didn't pick up on that. Are we not entitled to “due process”?

PUBLIC SERVICE ANNOUNCEMENT: Unfortunately, due to the “process” if you love me, you are now guilty by association.

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..."