I hit my fifth year this month.
If you have read this blog from THE BEGINNING then you know, this an important time. From what I feared the most, the devastating effects from Multiple Sclerosis.
Odd, isn’t it? I feared MS more than any other health crisis. I had fear for my family more than myself when the jeopardy came to cancer forming as close as a third of an inch away from shutting off my trachea. I know that sounds ridiculous, but no two people are the same with MS. One can live with sensory symptoms only, the other can literally fall apart the first year.
In my personal story, it was guessed to be brain cancer, then I was originally diagnosed as probable Relapsing Remitting Multiple Sclerosis. Yes, the following doctor stated I was a classic case of Lyme disease. Then Sloan Kettering stated the brain lesions could be from misdiagnosed cancer. My common sense knew what two neurologists endured with studying the brain, so I held on to the original neurologist’s quote, “If you don’t have any disability in the next five years, you never will.” I researched that fact and the Mayo Clinic confirmed.
It’s felt that most people experience the severest disabilities of MS within five years of diagnosis. After that point, their disabilities don’t continue to worsen significantly. Therefore, if no additional disabilities appear within the first five years, then they are unlikely to occur in the future. But nobody can predict what will happen to any one person and so many things can have an influence on that. It’s been proven over these short years that doing all of the “right things” will increase your odds of a better outcome. http://my-ms.org/ms_prognosis.htm
Just as life famously throws roadblocks at us, I never did get a concrete answer. Although, I did have that cancer which was blocking my trachea and wrapped up around my thyroid, removed. I went on with life while everyone thought I lucked out, and in the back of my mind I counted the months to hit my fifth year mark for the parole board and probable RRMS.
I was lucky enough to meet people with MS. They were walking, talking, laughing, with eyesight, and that monkey hanging on their back, just like me.
To this day when I look in the mirror I know how destructive I have been with my body in my short life. I marked those days off to five years as though I was on a maximum penalty prison sentence.
As my husband lived in denial, my very mature daughter is the only one who knew I lived with an inner countdown. While she doesn’t believe I carry MS, she is beyond compassionate, empathetic and positive as always.
During this time two publishers and an internist doctor have pushed me to finish my manuscript to tell my story, along with the vital things I have never even shared on this blog. I didn’t feel ready. I didn’t feel as though I would be fair to the many people who live with MS, cancer, and lyme without an ending. I want to help, not hurt.
What I have never shared with anyone is the fact I live with many symptoms of MS. Yes, MS and Lyme are almost identical. The symptoms I still carry could be the positive blood test from Lyme as well, but just as most in the medical struggles have learnt as they were cheated at this card game, you can be bitten by a lyme infected tick and it will ALWAYS show up in your blood. I grew up on a farm. There are a great deal of debates with Lyme in the medical community due to insurance regulations, as well as a lack of knowledge on how to treat chronic Lyme.
I have always listened to my instinct, and when I do, I am never steered wrong. I’ve paid close attention to my body this past five years. To be blunt, and more importantly with myself, I have some form of something. Whether that’s benign, sensory only, around the corner from destruction, or the aftereffects of cancer, I have something. And that’s exactly why I play it safe and continue taking LDN. Only people who live with me know I take that pill religiously. LDN – the low dose naltrexone I detailed in this blog. Not FDA approved but a common, effective tool in the fight against this mysterious disease. It’s a proven fight against Lyme as well. Some doctors believe in it’s ability, while some demand to know how I obtained it. I also know the LDN makes a difference since I have experienced what it feels like to run out of the pill.
Even though myself and my family enjoyed living in the south for many reasons; The school our daughter wanted, the beach, the consistent sunshine, (sun, a factor in fighting MS), and the doctor that found my cancer right away, my job, away from the stress, gossip, and falsehoods we were accustomed to from our hometown. I had one more personal reason; fall apart in private. I expected it to happen. I wasn’t so sure I would hit the five year mark free from disability. Due to that blessing, I have taken my gift seriously and taken care of myself.
This blog is about my acceptance and to not discourage the reader to not listen to your doctor. There are misdiagnoses in this world, my cancer was missed repeatedly, but not all doctors have to be discredited. The sensory symptoms, fatigue, double vision, memory issues, migraines among other things, that I may not have every day, but still carry, aren’t from the cancer they removed. Not from the early menopause my surgery put me into, just my luck of the draw in life, or due to having 7 inactive brain lesions. The symptom list is the same as listed on having brain lesions in ones brain. Then again, possibly, I carry all three?
I may never know and I quit caring to know.
I will continue making plans with my family. Laughing so hard it hurts my ribs. Exercising to stay in shape. Relish in my hired writing assignments. Eating as mimimal as possible. Feel gratitude towards real relationships and those who are astonished by how healthy I’m told I look.
Even though I live with continued trips to NYC for tests until I ironically hit my five years to be considered a cancer survivor, and my dear friends have empathy for the fact that I can’t ever be insured since I had cancer. As they say to me, “That’s awful, I am so sorry. It’s as though they know how you will die.” It’s ok, I still have no idea. There’s two other high possibilities.
I lost my mom on December 22nd. I think of her as I type this with my sensory symptoms, knowing she was never wrong. She repeatedly warned me, begged me to be good to my body, to treat it like a growing plant. Now I not only know I screwed up in more ways than ten by not listening to her, I also know at one time I walked around with lyme, had the close call of life and death cancer ripped out, as I continue to wish the RRMS the best. Isn’t that what every obstacle in life boils down to anyway?
**UPDATE: I STILL TEST POSITIVE FOR LYME, BUT I’M TOLD BY TAKING IT UPON MY OWN EFFORTS, I KILLED THREE STRAINS WITH COLLOIDAL SILVER, MEAT FREE DIET, DETOX AND HYDROGEN PEROXIDE BATHS. THE PHOTOSYNTHESIS MACHINE IS NEXT FOR THE LAST TWO STRAINS. TRUTHFULLY, I CARE MORE ABOUT MY CANCER STAYING AWAY. THE LAST TWO LYME STRAINS DOESN’T AFFECT ME. TWO MORE PHYSICIANS I HAVE DEALT WITH BELIEVE I WAS IN FACT, MISDIAGNOSED WITH MS.**