I had to learn how to understand a world where I could not control everything.
I had an episode two years prior to my first confirmed attack where half of my face went numb. I was shocked that I could feel only half of my tongue even. On one side, I could taste and feel as normal. On the other side, my left side, my tongue could only feel the texture of sand, there were no flavors or anything other than the feeling of grit.
That first episode was labeled as Bell's Palsey by the ER doctor, but the neurologist that I was referred to said that it was “something else, and as long as this goes away” I should be fine.
Years later, a couple of weeks before Thanksgiving 2006, the symptoms of my first confirmed relapse appeared. Lhermitte's sign, as it later became known to me, was my first symptom. I would look down and my hands and feet would go numb. I could work it like a switch. It had become a sort of morbid party trick that I would talk to my husband about. I would look down and laugh and say, “I really should do something about this pinched nerve.” He would roll his eyes at me, annoyed, and say, “You should go to the doctor.”
I didn't listen.
Days, weeks and months passed. The holidays were over. I am grateful to God that I was allowed the time to enjoy one more winter of holidays with the feeling of youth, confidence and strength before the hard weeks that were to follow.
It was the start of February when my symptoms got worse and I had to take what I believed to be a pinched nerve seriously. I woke up one morning and the party trick was gone, the tingling and numbness in my feet was very present and fully unwilling to retreat. I went to a local family doctor and was told that I needed an MRI. I thought that this guy was a total flake and really didn't understand why a back issue would need a brain scan. I went to get the MRI that day and felt vindicated when the results came back with nothing.
The next morning rolled around and I was numb from the waist down on both sides. I feel remiss in just saying numb or tingly. The feeling is more than that. You know when your foot falls asleep? You shake it until the blood starts flowing again and right before your senses come back to normal, there is a very sharp pain from the tingling. That is the feeling that I now had from the waist down.
Day three was worse. I woke up with the neuropathy all over my body. You could draw a line horizontally across my body, across my arms and chest – from my breasts on down to my toes, all I could feel was those painful pins and needles. I visualized ripping off my skin and leaving it in a pile on the floor, thinking that there would at least be respite within a definitive pain.
Two weeks passed. Getting in to see a neurologist proved to be very difficult. The ER had nothing they could tell me because our small hospital did not have a neurologist on staff.
I tried another family doctor. He was the first person to say it to me. He sat with me. He looked me in the eyes and said, “I am not a neurologist so I cannot say for certain what it is, but I think you know what it is that is wrong with you.”
During all of this mess, I had done what so many others of us do when something is wrong. I had Googled my symptoms to the hilt and kept finding one answer. One miserable, terrifying, unpredictable answer. My doctor was looking at me. He was silent. His eyes were kind. There was some kind of fateful clarity that was allowed to flow into that room, in the space between us. “I think you know what is wrong with you.” Why would he say that? How does he know what I have been suspecting? I was broken, but two little letters flowed from my mouth and into the room in a whisper. “MS?”
“Yes,” he said.
“But I’m a mother. My son is only four years old,” I pled, as if he could take this away, as if this was his choice.
We just sat there for a moment. Then he walked me into the waiting room where my son was waiting for me. I took my son's hand and we walked out the door. I was left to the task of confirming this diagnosis and learning how to accept my new, unwanted fate.
I had to learn how to understand a world where I could not control everything.
I had to learn how to understand a world where I could not control everything. I have Obsessive Compulsive Disorder. I have had this since I was a child. For the most part, my OCD does not get in the way of my life. I never needed any medicine for the anxiety I experience from my OCD until I was diagnosed with MS.
Seriously though... I have OCD and was diagnosed with a disease that has no known cause, no known cure, no predictable progression path and no treatments to stop progression; that is almost comedic! Oh, who am I kidding... It is freaking hilarious in the darkest way. I don't know any 'normal' person who would take this diagnosis with ease. Everyone lives with uncertainty. Having MS makes the uncertainties of life louder.
Thriving with multiple sclerosis is an uncertain art. It is a complex disease, therefore life MUST be simple, or at least as simple as possible. I started simplifying my interactions with people. I had to make a lot of adjustments to what I expected to give of myself. My husband has been a great caretaker and remained incredibly loving on the good days and the bad. I have had to learn that having a disease DOES NOT make me any less of a mother or wife. I still love them just as much and with the same drive and dedication.
I have had to learn how to take care of my body. I need to be sure that I have done my best to stay as healthy as possible, for as long as possible, for the happiness of my family and for myself. This means that I need to exercise and eat right. For me, eating right means no pop, no fast food, no artificial ingredients, humanely raised and slaughtered meat, all natural sweeteners (hence my beekeeping) and basically getting back to what has sustained us as humans for most of history.
I have built my own business as a way of maintaining my business acumen and continuing my career. I love creating things. I love providing good things for people. I love being a positive force in nature and for our society. There is joy in the little luxuries and I hope to teach people to treat themselves to the good things, the best things.
Good news is...
I have learned how to embrace the unpredictability of life, and this does not come naturally to me. I love to quote the first neurologist, from The Cleveland Clinic, who spoke with me. I was definitely NOT someone who was gracious about receiving a disease diagnosis, and I had annoyed her profusely. She stared me down and said with annoyance, “It's always the ones like you that do the best!” She was right, I have done great! I am currently going on six years without progression and I am happier than ever!
My husband, my son and my friends. I am so very fortunate to have been able to surround myself with such deeply loving and caring people in this life. I have been blessed to receive such pure love and care that many people miss out on. I wish I could share this love with everyone.
There are too many accomplishments to list. I am proud of every day that I am here on this earth. Today marks the 12-year anniversary of my father's death. I was only twenty-four when he died. I look at the years differently now that I see my own age creeping closer every year to his age when he died.
I have learned how precious life is and how quickly it passes. I am grateful to appreciate the days as they come. I think that my best accomplishment to date is the realization that I am not special. I say that with the brightest of outlooks. Truth is, everyone gets sick eventually. I am not special because I have a disease. I have been very fortunate on many fronts.
I have a great progression path so far, in that I have not progressed in many years. I have been able to watch the years pass without letting go of many things that define me as a contributing member of my family, of this society. I have hope that I may still be walking when my grandchildren are too. This is something that wasn't afforded to my own father who never had MS and died only four months after his first grandson, my son, was born.
Take it one day at a time. Also... Remain a bit ungrateful. I mean, it is healthy to count your blessings, but always remember that today isn't really good enough. This attitude is what keeps me working towards a healthier lifestyle and allows me to focus on finding ways to halt MS for all of us.
It is great to be a positive person, but it is better to be a person with a purpose.
Thriving with multiple sclerosis is an uncertain art.
There are so many more facets to talk about when it comes to carrying the burden of MS, but I am sure that I have said more than enough for today.
I am the owner and creater of Zizilia Classic Luxuries. I have been many things in this life, an advocate, a shelter organizer for domestic violence victims, a student, a writer, a friend, a mother, a wife and many other things. As the years have passed, I have collected more titles, more experiences. I have a love for life and everything that it has to offer. I still don't know what I want to do when I grow up. I doubt that I ever will. How do we find one thing to settle on, to focus on? I haven't found a satisfactory answer to that question yet. I have realized that I am only guaranteed this life that I am living in today. I don't know if there is an afterlife or if I will be reincarnated. I do know that there are countless things to do and see while I am living this life. I want to make the best of the blessing of time that I have been given.
Point me towards the unknown and I will begin walking every time.
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