I know I should probably start my story with my life, but in all actuality it started with my sister. Life for this Ninja with MS started over 20 years ago. At the time this diagnosis was deemed a death sentence and even though I choose not to believe that was the case, it was hard to make anyone else believe or see the light at the end of the tunnel. I think there were only about two therapies out and hers was an Avonex shot given weekly without an auto injector. Side effects were massive for her andshe could not bring herself to actually give the shot on her own, so either I would do it when I was around or my other sister would assist. I watched her go through a myriad of emotions. It broke my heart, made me angry and made me driven all in the same breath. Years later, when my daughter was 16 years old, she was diagnosed. Her onset made me want to lose my mind!! My sister’s was a slow, mild onset, a little tingling that lead to a drop foot. My daughter, on the other hand, went tingly and numb lost her ability to walk normally, basically completely blind, all in a matter of a month. Honestly MS wasn’t even i my through process when her symptoms started. She was so young and I had never heard of teenagers getting it before. So much so that when she was diagnosed we almost couldn’t find a neurologist that wanted to treat her, until we found a MS Center in Atlanta. As a update for them, both are doing well and living normal lives with MS.
Now, my life personal with MS! As if living through those two experiences just mentioned wasn’t enough!! I was celebrating my one year anniversary with my husband, the as we were getting ready to go home the bottoms of my feet went kind of nummy/tingly! Now, I’m not a flip-flop or high heal kinda girl, but that weekend was a “be cute” kinda weekend and I was in shiny flip-flops and some kind of heel all weekend. Not my normal tennis shoe or work shoe, so I chalked that feeling up to me not being use to the shoes. Unfortunately, the sensation never went away and just got worse. It crept up both my legs and then to my hips, all the way to my mid-back. Then out of the blue, it left my right side and was solely on my left side but kept going up to the top of my head. Leaving this tight hugging feeling from my ribs to the middle of my back, like a half hug. I also had this awkward pinching feeling on the
back of my upper left arm, like someone was pinching and twisting it; not hard, but annoyingly so. And that is how my venture started May 29, 2012. I say this is where it started, but let me take you back to me being in the Army…yessssss that far back! In the mid-90s I had a few things that were signs I am sure this MS thing was already a part of my life; extreme fatigue that no one could explain to test away. I would trip over my left foot, for no apparent reason (I blamed it on certain types of shoes) Muscle spasms in my left thigh and a tightness that couldn’t be explained. Anxiety that popped up out of nowhere and was short lived. The Army blamed most of these symptoms on stress! Maybe they were right, because we all know stress triggers MS symptoms. So I can only tell you what my neurologist told me. He’s best hypothesis is that because I was active most my life, ate healthy about 80% of the time, maintained some form of supplements daily I held my real live onset off until I stopped those things. Why I stopped those things is an entirely different blog topic for a different time. But know that within a six month time period BAM there I was! Diagnoses on 6/23/12! Mind you, but the time the doctors gave me my diagnosis I already knew what I was dealing with and they were really just confirming it for everyone else. Being around this disease for so many years and knowing the ins and outs, I already knew what was going on with my body. I just really wanted the symptoms to stop at that point.
Life was a roller coaster for about two or two and half years! The symptoms were a beast! The came more than they went and the fatigue was worse than ever!! I grained about 25-30 pounds within 3-4 months after I was diagnosed. At 5’ tall, 225lbs did not fair well. I was very symptomatic and in a lot of pain. I couldn’t workout the way I use to because everyone was afraid I would fall and hurt myself. Lifting weights alone was frowned upon. Uhhhhhhhhhhgggg…..I was FRUSTRATED! My family wanted to be supportive, but they weren’t, not really. My best guess is they couldn’t understand why I looked so normal but was so very different! They didn’t know how to “help the right way” because they didn’t understand the disease and I am not sure they even wanted to learn about it the way I did and they didn’t understand what made it better or worse. I spent many nights crying just wanting someone to help me through a day with normal stuff like cooking a healthy meal from time to time. Not just running out and getting a quick fast food meal that would make me feel worse the next day. These concepts were like speaking a foreign language to them. We’d be walking at the mall and they would walk away from me, not realizing for quite a distance. I could no longer keep up even at a slow pace and sometimes I needed a chair to get around because it was just too much for me. And I wasn’t crying just because they didn’t understand I was crying because I wanted to JUST BE NORMAL AGAIN and I wasn’t.
Slowly I changed my diet a little bit at a time! I cannot do things cold turkey or in one full swoop. I get over whelmed and fail miserably! If you’d like to try some of the recipes I use that are of the healthier variety, check out my NINJA RECIPES that I’ve gathered from all over. I stopped beating myself up for not being able to workout like I did before and for not looking like the super fit person in the workout videos while I worked out. I allowed myself to be me at my own starting point. I stopped being mad that I wasn’t going the gym anymore. I researched short workouts that got great results and started doing them modified. VERY MODIFIED! I found an all-natural, healthy meal replacement shake that OMGooooosh made the biggest difference to my weightloss, my fatigue and ME. I’m not saying it works for everyone, but for me it’s a life changing, saving grace. You can check out the workouts and the shake by CLICKING HERE and scrolling through. I started spending time meditating for my spirit and mind. Growing closer to God. Spent time teaching my family what it really means to have MS and what a good day looks like and a bad day. What to expect on a bad day and what I expect of them when I am having a bad day. They don’t get it right everyday even now, because to be honest they forget, because these days I have more good than bad days. But when I tell them now, they get it! I gave them great coping tools and ways of understanding. Thankfully they grasped them!
Believe it or not, overall this diagnosis has been a blessing from God! Crazy right? It’s allowed me to learn to become healthier! I lost 80lbs. I learned to control my eating with portion control and I still eat a lot of the things I love and found alternative for things that were not good for me. I learned to control an almost life long eating addiction. I’ve found awesome short exercise plans that produce crazy results and I don’t have be at the gym for 3-4 hours a day. I work out 30-45 min. 6 days a week and the rest of the day is mine. And I’ve been blessed to be able to share my story and help others with similar situations and their family’s deal with this and similar diagnosis. My days are more better than not and my symptoms still rear their nasty lil head from time to time, but no where near how they were in the beginning. I’m managing a life with MS in the most Ninjatastic way! Choosing to smile over tears and laugh over crying! I see the light at the end of the tunnel and its soooo bright!
So that is my Ninja life with MS!! It’s been an interesting journey and it’s not over yet, there is so much more to come. I hope you continue to follow me and see what the future brings!