Bring it 2014

As another year comes to a close I think back to the twelve months of 2013 and, as I often do at this time of year, become both melancholy and motivated. What is it about the culmination of a year that invokes such powerful emotion? I find this time of the year to be quite juxtaposition as I both long for times gone by and yearn for those not yet experienced.

 
I suppose there is somewhat of a mourning process for me when each year concludes. While I await, with cautious optimism, the months ahead, I know all too well that time marches on and like it or not I need to embrace the newness and let go of the old. The thing about time is that you can’t retrieve it. Once it’s gone it’s gone forever and you had better hope that you used yours wisely.

 
The two questions I ask myself on this, the precipice of a new year, are:

 
Did I use my time to the best of my abilities?

 
When I leave this earth will my time spent have made an impact?

 
As much as I hope to utilize my time I know many hours of my life are spent on the couch dreaming. Let me preface this by saying I am not resting my laurels by choice but by virtue of this thing we call MS. So I ask myself, as I am certain you do, how do I make the very most of our time give limited mobility? Loaded question. Short answer? I write my little heart out both is an effort to purge myself and reach others. While my writing may be perceived to simply help others I must confess it’s quite the antithesis. When emotions run high and tears fall from my eyes I turn to writing as its cathartic. Even as I write this my eyes fill with water as I have such a desire to do so many things yet feel like I am on the sidelines of life much of the time.  Having said this I am not into pity parties or crying myself to sleep, rather, I prefer to do what I can with what I have. These tears only propel me further and serve as fuel for my desire to live my time with purpose.

 
We all wonder how we will be remembered once our short time here on earth concludes. I am not afraid to die. I can think of nothing more beautiful that living in eternity with our heavenly father among those we’ve loved and lost. No pain. No sadness. No MS. No, I am not fearful of death, as it is only death of my shell, my soul will thrive and live on. The imprint I leave behind is up to me and I hope to live with such intent, such passion and such reverence for life itself that those I leave behind will be better for having known me. Yes, I am limited in what my physical body can do but I refuse to let that stop me from thriving. Each day I seem to face a new hurdle be it physical or emotional and although I may stumble and fall I will get up each time. I want others not to remember the number of times I fell, rather, the number of times I got back up. I will live this life to the fullest and I will leave this world a better place.

 
Bring it 2014.

Crisis of Faith


For so long I have lived in fear of acquiring some sort of  “super” bug as a result of being on such intense immunosuppressant therapy such as Tysabri. Well, fear no more. Following my last infusion in early November I began to feel increasingly worse and what had began as a flu had migrated into full blown bronchial pneumonia. Despite antibiotics, steroids, albuterol and a nebulizer I steadily declined. Until today. It’s been exactly 20 days of living with every symptom under the sun and even though the majority of them are still present, I feel a modicum of strength I have not yet experienced.

 
As you can imagine, and well know, living with MS and the more aggressive forms of treatment, we often live in a world filled of fear, uncertainty and worry. Although well founded and completely justified, I am finding it both counterproductive and short of faith.

 
Do you believe in self fulfilling prophecies? I do. I am a firm believer that what you put out comes back to you tenfold and always prided myself on my optimism, however, I was a fraud. While I was thinking all of the right things I was most certainly not digesting and metabolizing it. While I can easily spout off every positive cliché’ and be of immense service to others, I found I, myself, was living encapsulated in fear.

 
Well, I had an epiphany.

 
I found there was a direct correlation between my fear and lack of faith. This is not to say this was deliberate, yet purposeful or not its impact was the same. With every fear, with each doubt and in every tear I cried I was moving that much further away from my faith. I immediately began to pray every time I felt any one of the myriad of emotions we so often feel living with this beguiling disease. Within a few minutes I not only felt relieved I felt a resurgence of faith. Where there had been a chasm in my spirit it was now filled with hope, praise and contentedness. Where there had been a crisis of faith there was renewal and I knew that, despite all I contend with, I would be okay.

 
I am still living with pneumonia and the fallout from MS but gone are the fears and doubts about where I will be tomorrow or five years from now. Wherever this disease takes me I will be on the right side of His glory and on the right side of my faith.

Sounds of the Soul

People often ask me how I maintain such a positive attitude. While I go could into a litany of spiritual and cognitive practices I can easily answer that question with one word today; music.

As I type I am listening to Christina Perri's, "Arms", as it reminds me of someone special. Depending on my mood I will match it to any of the over 100 play lists on my ipod and lapse into sort of musical coma. I venture to a time and place reserved only for me and relish memories, thoughts and emotions not so easily accessed without the sounds and harmonies. Once enveloped, I can be lost for hours, only to come to by the shrill of a phone call or alarm.

I believe my love of all things music began at a early age as my parents either had me involved with an instrument or played music throughout the house. My Mom was quite proficient at both the guitar and piano and we'd often sit and sing folk songs while she played. I began piano lessons at 5 and played in recitals throughout my adolescence. Yes, there were days when I didn't want to practice but all in all I am very grateful I stayed with it.

If I were on a deserted island I think I'd be okay without the everyday provisions but without music I'd be certifiable. Music is the story of my soul, the very reason I smile, cry, laugh and listen. I get lost in lyrics and melodies as they take me to a place and time only I can savor. And savor I do. I find myself listening to music hours on end without so much as a desire for television.

Unlike so many other things out there today, music is a 'healthy' addiction of sorts. I wish more kids would take up an instrument or listen attentively to the music of yesteryear as there was so much more to a song then techno-lyrically-challenged sounds that are all too prevalent today.

Do I sound old? Good. When it comes to music appreciation I'll be old-school any day.

Optimist In The House

You may have noticed that the name of my blog has changed. While I am still very much that girl who conceived, Persona of A Princess, I have outgrown much of what that name connotes. With all of my life experiences in the 6 years since it's infancy, I have found myself morphing into the woman I'd always hoped to become. This is not to say I am, "fully baked", or at the end of my spiritual or emotional journey, rather, I am learning to gratefully embrace the everyday ups and downs life hands my way.

Optimist, could be difficult for some to understand given my three year battle with Multiple Sclerosis, however, this diagnosis is exactly what highlighted my optimism. It is impossible not to stop and smell the proverbial roses when living with something as unpredictable and life altering as MS. This is not to say I don't have bad or trying days, rather, my essence of always looking on the bright side remains steadfast.

As well, my faith has become the cornerstone of my being as it is Jesus who helps guide me through the darkest of times. With Him, how could I possibly be anything but an optimist? Once again, God doesn't always promise you won't get stuck by a few thorns but He does promise the beauty of the roses to help you forget the pain. There always seems to be a greater lesson amidst my trials and tribulations and I want to always be cognizant of them.

At it's inception, Persona of A Princess, focused on everything inane, fun and superfluous. The new name change doesn't mean I wont find those things entertaining and fodder for thought, I just also hope to strike a balance among those things and what now motivates, touches, moves and inspires me. In doing so I am hopeful you will find them to be the same.

So here goes. Let's have fun on this journey of life seen through the eyes of this forty-something, life-loving, God-fearing chick.

MS is Definitely Blue


Have you ever just looked to the heavens and wondered when the hardships would come to pass? When would the physical, psychological and emotional pain abate? This mindset is so utterly powerful it is a wonder not more people living with Multiple Sclerosis aren’t hit with full blown depression. Actually, most are to one extent or another, and it’s imperative to recognize the signs and symptoms in yourself or those you love so help can become readily available.

 
Depression is characterized by a combination of symptoms that interfere with a person's ability to work, sleep, study, eat, and enjoy once-pleasurable activities. Major depression is disabling and prevents a person from functioning normally. Some people may experience only a single episode within their lifetime, but more often a person may have multiple episodes. Especially when confounded with the myriad of psychological and physiological aspects of MS one can stay in the vicious cycle for years on end.

 I know. I’ve been there.

 I have experienced depression both with, and autonomous from, my MS diagnosis. I’ve always had health issues so I believe that these predisposed me to experience a deeper sense of loss, pain and sadness than had I not lived with them. The latter experience, after my MS diagnosis, is, to a large extent, still being played out. Gratefully, I do not experience depression as acutely as I did when I was first diagnosed, however, it still rears it’s very ugly head from time to time and usually with MS exacerbations.

I have been treated both with therapy and meds and in conjunction; I found the combination to be very helpful. Whatever modality you choose for yourself please just get help. If you’re uncertain if you’re living with a depressive disorder, here are some signs to be on the look out for.:

  • Feelings of hopelessness or pessimism
  • Feelings of guilt, worthlessness, or helplessness
  • Irritability, restlessness
  • Loss of interest in activities or hobbies once pleasurable, including sex
  • Fatigue and decreased energy
  • Difficulty concentrating, remembering details, and making decisions
  • Insomnia, early-morning wakefulness, or excessive sleeping
  • Overeating, or appetite loss
  • Thoughts of suicide, suicide attempts
  • Aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment.

It’s imperative to remember that you can have one, a few or all of the above symptoms and they are all equally deserving medical attention. I understand that some of these are by products of living with MS, however, it is vital you deem weather your symptoms are solely MS or something else. If you have any questions please discuss them with your physician.

I remember feeling so utterly alone and misunderstood when I was first diagnosed. In fact, before actual diagnosis, while I was enduring test after test and experiencing a great many symptoms, I felt like I was going crazy. It’s incredibly daunting to endure tests leading up to any diagnosis and the tests for diagnosing MS are anything but fun. The, you don’t know weather to laugh or cry when you finally have an answer. While you’re happy to be off the symptom-go-round you’re suddenly faced with a life altering disease.

If this sounds like something you’re enduring please know you are never alone. There is so much help out there for both you and your loved ones. Talk to your doctor, a mentor, pastor, therapist, family member or friend who cares. You have so much of life inside and ahead of you, don’t let depression curtail it.

Hope

 
Hope. Living life without it just isn't an option, especially when living with MS. Hope unlocks the door when we think it to be cemented shut. It allows us possibilities when we find ourselves at the end of our rope and elicits that tiny fire within that, when nurtured, becomes a roaring flame.
 
I have created my own little Anagram for hope:
 
  • H Having
  • O Open
  • P Possibilities
  • E Endlessly

When I feel like I've reached my limits hope enables me to face another day with enough optimism to find another possibility for myself.
 
One of my favorite passages in the Bible speaks of hope:
 
"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things are seen are transient, but the things that are unseen are eternal"
 
Corinthians 4:16-18
 
Focusing on the intangible is where we need to be to not only acquire but maintain hope. It lies deep within us and forever in our Lord and Savior. Tapping into it is essential to our ability to rise, thrive and truly live this live with meaning. Hope allows me to feel that tomorrow brings with it insurmountable gifts, regardless of that trials I may face today.
 
Are you finding it hard to hold on to hope? I understand how difficult can be to see the rose among the thorns, but know that even the tiniest glimmer of hope can open doors you never thought possible. It will transport you to a new place and time in your life where the light eclipses the darkness and even amidst your shadows you can find your way.

Stress Isn't Best


Stress is my honorary four-letter word. Yes, I can count to five and know it’s not necessarily a bad word but if you have MS it can be downright lethal.

 
We all have stress in our lives, it’s managing that stress that’s imperative to our overall health. Be it the kids, work or just the everyday stressors of living with chronic illness that beguiles us we can’t allow stress to define, confine or confound us. I know this sometimes seems impossible, however, when looking at the impact it has on Multiple Sclerosis it is more than necessary.

 
When I was first diagnosed my neurologist told me I desperately needed to keep my stress levels in check. I looked at him like he had three heads. I was just given a life altering diagnosis, facing a multitude of financial, emotional and physiological uncertainties and this guy is telling me not to stress. Sure thing, doc. But you know what? He is so very right. Almost immediately I began to look into stress management techniques and almost as quickly they began helping. Here are some things that have really helped me:

 

Cognitive Training: Get rid of the “stinking thinking’ that always gets the best of us. Changing our thought process is much like creating any good lifelong habit. I had to really look at how my negative thoughts were self fulfilling prophesies. Changing my internal dialogue became essential to living a happy life. My “I can’t” became “I can” and “I will”.  Almost overnight I began living a more positive existence.

 

Guided Imagery: Where is your happy place? If you could be anywhere where would that be? When life gets the best of you go there in your mind. When I’m getting infused, feeling the effects of the MS or just overwhelmed I check into my favorite location; my childhood home surrounded by my family. It always soothes me. Be it a beach or mountaintop go there and enjoy!

 
Reading my Bible: Where do I even begin? This is perhaps one of my most cherished sources of serenity. Christ offers us not only salvation but a limitless supply of inspiration. I love to highlight as I read but if you don’t have a Bible at your disposal get the Bible App. This is a great way to align yourself with His word and really reap all there is to offer. How can we feel stress when Jesus has died on the cross for our sins and tells us by living His word, we are saved? It’s simply amazing!

 
Talk and Share: Getting it off our mind is crucial. Talk with a confidante, family, pastor or therapist. We can’t possibly carry around all the burdens of living with MS alone, don’t try. Find support from any number of sources including online support forums.

 
Exercise: Move it and win some endorphins! Exercise is a free and wonderful source of stress management. I know some of us have real physical limitations but focus on what you CAN do and just DO it! Couple physical activity with the outdoors and get a double dose of healing. Do it with a friend to keep yourself motivated.

 
Music: I am a music junkie. If one were to look at my ipod playlist they would think me crazy. I love classical, Rock, Rap, Blues, Christian etc. The key is to find whatever heals your spirit and run with it. I ALWAYS have my ipod with me at infusions and find it not only passes the time but truly eases my fears.

 
Writing: Need I say more? Whether you journal, blog or just jot down things it’s all good and really works!

 

Essentially, find a method that works to relieve your stress and make it work for you. We may not be able to change the fact that we have MS but we can mitigate the effect it has on our lives. Most of all, remember you are never alone, we’re in this together!

Faith Under Fire

People often ask me how I maintain such a positive outlook despite living with MS and Chronic Pain. That's easy. Faith. Not faith in myself, my doctors or friends and family, although having faith in them is instrumental to my every day successes, but faith in God.

Before I go on I have to say my positivity does not mean I don't have down or bad days, because Lord knows I do, but they are just moments in time that are eclipsed by the insurmountable number of amazing days. I most definitely have times when I feel sad and blue and struggle, but I know that they will pass. The reason I know this to be true is because God has always seen to it to be so. He has provided me an outlet for not only for praise and joy but for troubles and trials. I have an omnipotent, omnibenevolent God who elicits my own strengths when things get tough. Having faith means letting go and trusting that God will see you through to whatever outcome He has in store. Now you may not be expecting that particular outcome but somehow, someway God has always provided me coping mechanisms.

I understand that there be some out there asking why God lets them suffer and even have Multiple Sclerosis. I think the more important question is why NOT you? God gives His toughest battles to His strongest soldiers and to be among them is something I've always had extreme gratitude for. Getting to be gratefully faithful is an evolution of sorts, however, because I definitely wasn't there when the doctor diagnosed me. I was filled with fear of the unknown and questions about my own survival. I had faith but I never really put my faith to the test. After all faith is truly believing when you cannot see hope and trusting when you do not yet know the answers. I had to really sit with myself for months after my diagnosis and learn to change my list of needs when I prayed. Instead of praying for health and wellness I prayed for strength and insight into His plan and how I could be useful to what He wanted for me. Looking to my higher power for a greater purpose literally saved me from myself.

How can I be so trusting at a time of great turmoil? The alternative isn't a good one. Pretending that we are all powerful and all knowing consistently blows up in our face. Relying on solely ourselves to guide us out of our own personal challenges has some serious repercussions. When or sense of self becomes inflated we tend to make choices based on our ego and not what's in our best interest. This is not to say do not think for yourself, because thought is one of God's greatest gifts to humans. Instead, do not rely solely on your own thought process to guide you out of your crisis. Rely on Him in times of chaos, praise him even when you feel least like it and your life will change. Of crisis a personal faith is born and sense of peace and satiation like no other.

Living with daily challenges is not easy, and I'm not pretending it is. Your challenges, however, can not only become tolerable but even joyous when you find your faith. I have never been closer or had a better relationship with God which one could see as an irony as I have never had more health challenges. But me? I see everything as one big blessing.

Friends and MS

What would our world be without friends? Spouses and significant others are incredible and they often are among our closest friends, however, friends are invaluable. I've always believed that friendships should be nurtured just as any other relationship as it is often these friends who are there for us during our times of both sorrow and joy.

Friendship takes on an entirely new dimension when it comes to MS. Regardless of how much they love us, and they do, there are times when some friends just can't understand specific aspects of the disease and how it affects us. I recall my diagnosis several years ago, specifically, the reaction of one of my closest friends. She was certain I could 'fix' myself via diet and positivity. Now those who know me know I am just about one of the most positive people around, as well, while I could definitely improve my eating habits, I eat very healthily. These aside, I was both perplexed and upset by her blatant lack of regard for the well known fact that, while diet and cognition help, they cannot cure MS. I was sad and angry and most of all felt misunderstood. How could I confide my innermost fears about this new diagnosis to someone who I spent more time justifying my symptoms to? Where was the compassion and unconditional love I so desperately craved and needed? Well, we all know knowledge is power so I took it upon myself to be the voice of reason and education. Instead of being put off, I understood that she was just trying to help me. Even if her information was erroneous it didn't change the love in her heart or her desire for me to heal. I, did, however, conclude that while I was in the throes of educating her I needed others who could comfort and guide me through my own fears, so I turned to some other friends and family who could do just that.

Guiding someone through an educational process on MS isn't for all friendships. I knew the love and foundation were there between us and that this was just an attempt on her part to help me. Even after all theses years she still has a tendency to spout out ridiculous and at times frustrating "quick" fixes, however, she is also very quick to be there for me through the infusions, side effects, countless appointments and myriad of other fun that comes with having MS.

Friends are not all created equal and remember all friends do not have to facilitate all needs. Go to some who understand some things and others for different needs. As well, realize that this is a very daunting and intimidating disease not only for us but for them. It is sometimes difficult for them to know the right thing to say or how to react to any one of a myriad of situations that can arise so trust your heart. Know that your bond will survive this just as it has and try and lead with your heart. Most of the time they are just as nervous and anxious for us as we are for ourselves. Give them the benefit of the doubt. Of course if it comes to the point where you feel you are in a relationship with a friend who just cannot understand anything ever it may be time to break it off for your own self preservation.

Hot or Not?

I make it no secret that Summer is my least favorite time of year. While other's slap on the oil, frolic at the beach and cruise with the top down, I stay within the confines of my air conditioned home. While you may think I'm a killjoy I beg to differ. I used to be "that" girl; the one with the convertible and killer tan to match. That was before MS. Before the time when just a short while in the hot sun greatly affected my cognition and physical state. Now before you go thinking this chick is all shades of darkness come summer think again. Of course I love a summertime glow and to ride with the wind in my hair, I just do it very carefully while keeping my core cool. And lest you think this is some psychosomatic phenom, think again.

Uhthoff's Syndrome is the worsening of neurological symptoms in MS patients where the body becomes overheated from any number of things like exercise, sun, fever, hot tubs etc. It is imperative, when you see an onset, to cool your core by removing yourself from the heat source and/or drinking water or other fluids. Ideally, keep your core cool from the start without putting yourself at risk.

Now I consider myself to be an intelligent woman and never do I intentionally put myself in harms way. That being said I had a frightful case of Uhthoff's Syndrome just two weeks ago. Just that morning I had an MRI of the brain with contrast and those who've been unlucky enough o have these repeated tests know it can be very anxiety provoking. As well, the contrast has a tendency to make one nauseous, sometimes culminating in throwing up. My anxiety was peaked when, after eight unsuccessful attempts at an IV they finally got it only for me to throw up immediately upon the entry of the contrast. Needless to say I was not excited to go back in the tube for another hour's worth of pictures. Anyway, a short while later I was finished and had expected to go home and rest, however, it was THE most beautiful day and I wanted so badly to go to the county fair. While I should have listened to that inner voice, I instead ventured out into the extreme heat and to the fair. Within one hour my drop foot became so intense that the toe of my sneaker had an indelible dust mark on it.  I could no longer walk unassisted and, while dragging my feet through the dirt, almost fell on more than one occasion. I knew what was happening so I immediately made my way to the snack shack for some water and began to head to the exit. En route home, I could barely recall the events of the morning let alone any other pertinent facts and I began to get pretty scared. It's extremely frightening to be in the throes of Uhthoff's Syndrome yet I knew the only way to get myself out of it was to get home, get cooled, get rest and get fluids on board. So that's what I did. Ultimately I did come out of it but it took three full days. Needless to say I will never again make that mistake.

The best way to deal with Uhthoff's is to never get it. Prevention is key to anything and this is no different. When you're out in the sun respect it and wear a hat or drink fluids. As well, exercise while hydrating and choose wisely when doing so outdoors. I walk my dog very early in the morning or late in the afternoon or early evening. I do take hot tubs to relax my bones, however, I keep my core above water and keep them to five minutes tops.

In essence be smart. Having MS does not mean you have to crawl into a cave for the summer months, it just means living purposely. Besides....Fall is only a few short months away!

A Purpose Filled Life

If I've found one thing to be irrevocably true it's that we all need a purpose in this thing called life. This factoid is doubly true if you are living with MS or any other chronic disease. While keeping us busy, it's not simply enough to do our countless errands, keep our endless doctor's appointments or give and receive love from those in our inner sanctum. Simply put, we were put here to manifest the glory of God and that resides not in some but in each and every one of us. That being said it is imperative we find something that serves our higher purpose; that we don't simply exist from day to day.

Now I understand that there are many days with MS where the very best we can do is exist, however, if you are living in your purpose you will find those days not only tolerable but gratifying. On the days you can, you do. On the days you need rest, you rest. For me I have found writing (shocker) to be my refuge. I have mixed my gift for prose with topics I know well and out came a passion and purpose unparalleled. Writing keeps me hopeful while it exercises my cognitive functions that, thanks to the lesions, have been greatly afflicted. Of course there are days the words don't flow as fast and my frustrations mount, however, I push onward knowing it is that passion keeping me both sane and in tune with myself.

Try to find something you both enjoy and have a propensity toward. Do you love animals? How about volunteering at a local rescue? Do you like fashion? What about becoming a personal shopper or a fashion advisor? Get involved in your local church as there's a myriad of activities to help you cultivate your inner purpose. I know you're probably wondering how to fulfill obligation while living with one of the most uncooperative of diseases but rest assured. In choosing something in line with your physical capabilities you will both rest easy and be confident knowing you can complete any task. The beauty is your purpose can be finely tuned and specifically catered to you.

Bottom line? Don't give up. Having MS does not mean to simply sit on the sidelines of life and watch the world spin. You were always meant for greatness. Be bold in your choice and move forward.

You got this.



Happy (belated) Birthday, America!

Happy Belated Birthday, America! Just a quick recap of my July 4th celebration:



Spent the week up in Marin County; quite possibly THE most beautiful place on earth. Who me bias? I kicked off the week exerting all of my energies and lying poolside. It's a sweaty job but someones gotta do it, and frankly, I've felt so exhausted lately it was exactly what the proverbial doctor ordered. Among barbeque's, lunches at the yacht club while viewing the America's Cup time trials, anchoring under fireworks and spending time with my parents it was a blissful trip. Even though I went up quite possibly the worst I've been in a while, I emerged tanned, rested and happy.

Now, amid the chaos that I call my life, I strive for peace and gratitude in all things. This is not to say I do not already abide by those tenants, it simply means I need, for personal supplication, to OWN them. LIVE them. BE them. I find my daily prayer has increased tenfold along with my need for stillness. It's amazing the self discovery that takes place when I allow myself to just be and not do, not be in motion constantly. It's harder then I thought, although immensely rewarding.

Now to begin to daunting task of preparing for yet another fun trip to Lake Tahoe with the fam. Yes, I'm being entirely facetious, however, I do hate leaving Abby. The only upside? She was completely gaga when I came home, running in continual circles, crying, barking, peeing and just exhibiting such happiness. What a welcome home!

Time Flies

Miss a month miss a lot. Now THAT's an understatement. May seemed to fly right on by with more challenges then I'd like but as evidenced by the date on the calendar, time does pass and so do the difficult moments.

I can't believe we're already midway through June and the official start of Summer is a mere two days away. As you can imagine, Summer is not my favorite month. As the mercury rises, so do the myriad of MS symptoms. When overheated I can quickly lose cognitive function, dexterity, balance among other functionality. It's something I work hard to avoid so while most worship the rays I covet the AC.

One things about Summer I absolutely love?

July 4th.

This year I'll be spending it as I do many others, amid family up in San Francisco. I am eager to blow out of here for a week and indulge in all things epicurean. I plan on spending vast hours in the swimming pool, on the boat or at the club while enjoying the company of family. I feel so extremely blessed to have parents who both thrive on doting on me. Their love nourishes the soul and I can never get enough. In any event, we will take the boat out he evening of the 4th, drop anchor in the bay and enjoy the most magical display of fireworks I have ever had the pleasure of viewing. As if that's not enough I am insanely eager to venture up to Lake Tahoe the first week of September. Again, I will be with my folks at our place in Incline and again, I will indulge in all of the favorable activities Tahoe has to offer. In essence? I'll sit my ass in a cabana next to the Lake alternately reading, sunning and swimming. Bliss.

As for the MS, it's definitely been trying but I am grateful this post didn't revolve around it.

Point, Jenn.

My Dog's on Paleo

I was at the small, canine-chic pet store the other day to stock up on, among other things, Kong toys, bully sticks and, of course, the seemingly ever-evaporating dog food. Its' presence is so fleeting I'd swear some carnivorous elves were sneaking away with bowls filled. I wouldn't ordinarily care or concern myself with the shrinkage, however, when you're paying top dollar for organic, Grain-free, high end chow you suddenly become observant. Yesterday, while admiring the amount I'd un-apologetically amassed at the pet store, I became inexplicably aware that, while I struggle and strive to, my dog's eating Paleo.

Now anyone who knows me know my Golden Retriever, Abby, is my life. As evidenced by her dining habits, she is treated as well, if not better then, myself. Howso? You may wonder? Here are just a few tid bits:

  • She's only allowed bully-sticks as treats and, at $6.99 a stick, they might as well be dipped in Gold leafing.
  • She's groomed, and I mean hair, nails, teeth, anal glands (yep, I said it) and face every couple of months, depending on her, ahem, needs.
  • Her food, including milk bones are organic and grain-free. I'd say it's for allergies but you wouldn't believe me.
  • All her toys are Kong so she won't accidentally break apart or ingest them.
  • She's never kenneled. When I travel either she travels with or is kept at my house with a live-in dog-sitter.

Satisfied?

Disgusted?

Good. I've done my job.

So while I try to adhere to some Paleo eating habits, my hound eats a nutritional, sustainable, organic diet fit for, well,  a person.



Faithfully Yours

I am sitting in my backyard writing as the sun shines among the various flowers peaking out from a long winter's nap. As I look around I ponder aspects of my life and why it is that, on days such as these, when merely walking to the mailbox becomes a challenge, I can somehow find a smile.

Faith.

More specifically?

Faith in God.

I find my faith so integral in allowing me to face and ultimately overcome many of the days I find it even hard to smile, but smile I do because I've got an awesome God who not only loves me but affords me the opportunity to see, smell and love the proverbial roses. I find it hard to conceptualize that there are some, many, out there who actively choose not to have such a faith and miss out on the all of the beauty He has to offer. As mind boggling as it is I will always respect all of my fellows just as I ask they respect me.

I suppose I am lucky. everyday I am completely and totally enveloped in His love for me and I'll be damned if I miss out on what gifts He has bestowed upon me. More importantly, I find it almost, no, totally impossible to survive having MS without such an awesome God on my side. That being said I am a firm believer that God helps those who help themselves so help myself I will by continuing to live in gratitude for all my blessings.

And blessed I am. As I look to my right I see my beautiful Golden, Abby, lying alongside me and then it hits me; I am not only blessed I am a blessing to many. Now while you may see that as highly noxious and conceited I have to say in order to count your blessings you must also include yourself among them. You are a blessing as He made you to glorify Him and love life. Seize the moment and live a fully immersed life as living anything short of that is a travesty.


A Walk to Remember

There are few times in life where we feel touched, moved and inspired by a single event. This past Saturday was one of those times.

I, and my trainer/friend, Steven, participated in Walk MS, a walk to raise both funds and awareness for Multiple Sclerosis. Not only did we raise much needed awareness with all the media hype, I, personally, raised over 1000.00 for MS research.

The walk itself was just over two miles but as you can imagine, it felt much longer thanks to my drop foot and muscle pain. That being said, Steven and I rocked it! I can't begin to tell you how supported I felt having such a terrific friend walk alongside me. Mere words cannot possibly do my feelings justice. As we walked we were cheered on by a myriad of people who lent an amazing amount of support and momentum. I felt a lump in my throat as I realized this walk wasn't just any walk but a walk for the disease that has altered my life in such a profound way. I was walking so multitudes after me may never again have to hear that devastating diagnosis and that felt immensely fulfilling.

If I am able, I will walk again next year as the key to fighting MS is movement. Staying physically active is incredibly important and it is because I have stayed active that I was able to fulfil my goal of crossing the finish line. Having my personal trainer and good friend, Steven, by my side meant the world to me, as it is because of him I was able to participate, and complete, the walk.

Thanks to all of you who not only donated but kept me close in thought and prayer.

I did it!

The Warrior Within

I need a new drug.

Any of you old enough to remember Huey Lewis will know I'm being halfway facetious and half serious. The half serious side dominates, however, as the side effects of the Tysabri are ferocious. As well, I am having a difficult time differentiating among the side effects and those aches and pains related to plain old Multiple Sclerosis.

Multiple Sclerosis.

Even now when I say it, it sometimes seems like I'm speaking of someone else. It's sometimes daunting to realize the person I'm speaking of is me. But it is. And I'm determined not to be a wallflower about it. I have MS, and while it's not my identity it IS a large part of who I am so I want to put that large part to good use.

This is not to say I'm not scared. Because I am. Every day. 365 days a year. But I'm a fighter and when fighters look fear in the face they stare it down. So each day that I wake with new symptoms or the days I find I can't make it up the stairs without a death grip on the banister I just embrace the symptom or grab that banister and fight. I could go on a diatribe about the myriad of symptoms I'm currently tackling but I'll save that for another post, I just wanted to let all of you know that I intend, even on the days I wake in tears, to be a warrior against MS.

This Saturday I am putting my words into action and doing Walk MS and I have to say I am a ball of nervous excitement. I have almost raised 1000.00 and am going to walk those few miles with a sense of pride never before felt. For those few miles represent the road of life and each step is but a moment in my lifetime journey with this disease. I intend to walk with faith, hope and determination that one day soon we will eradicate MS.

WIsh me luck!

Walk MS 2013

As all of you know I was diagnosed with Multiple Sclerosis three years ago and living with it has been a definite experience unlike any other. Truth be told? I wouldn't change my diagnosis for anything in the world as it has greatly opened my heart, eyes and soul to a beautiful being; myself.

That being said I want to fight this disease tooth and nail and would love 2013 to be THE year MS goes in the history books not for the lives it takes but for it's own extinction. Hence, I am participating in, Walk MS, April, 6th, and would love your consideration in sponsoring me.

We can and will eradicate MS but need your help.  Any denomination would be greatly appreciated as cumulatively we can fight, and win, the battle for the cure. Please visit my link below for more information.



Walk MS 2013 - University of California Irvine: Mrs. Jennifer Powell - National MS Society

Tysabri Blues

It was a Tysabri weekend for me.

What's that you may wonder?

Well, a Tysabri weekend consists of all the joys of the flu as the side effects of the drug mimic flu-like symptoms.

But let me back up.

My first infusion with the port was Thursday and all went well. The port was accessed easily and the infusion, other than the migraine, couldn't have gone better.

Jump to Friday.

I erroneously thought I had come out of the infusion unscathed other than the typical migraine I had had prior with my first infusion in January.

Ummm, yeah. I was wrong.

The unrelenting nausea began Friday afternoon accompanied by vomiting, dizziness, weakness and other fun side effects. Scared, I called my doctor only to be told these are expected symptoms and that I'd just have to ride them out. I don't mind what they said I only mind I wasn't better prepared for the onslaught.

Trust me, next month will be different because I will have an arsenal to help me through. I will have anti-nausea meds, saltines and 7 Up, ensure and movies galore to pass the time. I am almost ashamed to admit I became addicted to all things, BRAVO, as their programming, while crude and oh so dramatic, makes me smile.

The only silver lining in all of this? I am losing copious amounts of weight! Not exactly the diet of choice, however, I always have to find a positive in everything that happens so, so be it.

It's now Monday and I am coming out the other side. I have such respect for anyone enduring these treatments as they are not easy. My only hope is that it s attacking the MS as voraciously as it is myself.

One can hope.

Beam Me Up, Doctor

Why is it that this blog is suspiciously becoming more and more about my misadventures with MS? I suppose having this disease is all encompassing and I really do appreciate all of your patience while I bloviate about every incessant detail of my journey. Really.

SO I can can continue, right?

As if you had a prayer...

Umm kay, so, the latest is that I had to have a port-a-cath surgically implanted in my chest. Seems my veins couldn't take the usage of monthly infusions so the next best thing was to attach a catheter to my heart so never more would I have to sit through ten-fifteen IV misses. Now all the nurse has to do is get it right stick the needle via my catheter under the skin and the infusion of Tysabri can begin.

In case you're wondering? Yeah. I'm scared.

But that's for another post.....for now suffice to say I've entered a new realm in modern day medicine and should greatly benefit from it. We begin to infuse this Thursday morning so if you could send some good vibes, prayers and happy dances my way I'd be forever grateful.

But I'm still scared.