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!