There comes a point with every type of situation in life (especially when you have a chronic illness) where unsolicited advice becomes more harmful than helpful. As I get older, I’ve learned to ask others if they would actually like to hear my opinion on their situation.
I was a certified nutritionist for two years in my spare time, specializing in fitness nutrition. I am educated and aware of how to feed my body to feel my best; that doesn’t mean I’m going to eliminate the foods that don’t necessarily make me feel tip-top all the time. I openly share my journey on social media, and I love the opportunities and connections that decision has brought me – however, it also comes with a price...
My second solo trip to my hometown was during the peak of summer from April to May in India. One day, I went to visit my aunt. I sat on a sofa and after a chit-chat, my eyes were on the stairs in front of me that had no railing. In the past, I was scared to climb those stairs because of my MS symptoms.
But that day I did not have the same fear, and when my aunt went inside, I started climbing up...
Neurologic health care providers generally are very good at identifying new disease activity in MS. They use three criteria:
- The clinical history
- The neurologic exam
- Changes on central nervous system MRIs...
Part of my duties as a financial advisor is to provide a comprehensive strategy for clients preparing to transition into retirement. I create a financial plan that not only considers investment recommendations, but also how our clients can afford healthcare during retirement. The fact that I live with multiple sclerosis makes me particularly empathetic towards the challenges associated with the accessibility of healthcare. Since my diagnosis in 2012, I have been denied health insurance, life insurance, and fully understand that I am not qualified to purchase long-term care insurance due to my MS.
The traditional conversation regarding “healthcare” is not broad enough to include the rising cost of custodial care. How does an MS patient manage to pay for traditional medical care and assistance conducting ordinary daily activities around the home? Furthermore, how can someone living with a pre-existing condition like multiple sclerosis gain access to insurance that helps pay for fundamental functional abilities like bathing, eating, and getting in and out of a bed or chair?...
1993 was a normal year. I was a 20-year-old classically trained opera singer with a normal life. I was a tall female, and it always seemed like I was getting the short end of the stick in relationships. I didn’t know it, but another short end of a whole new stick was heading my way.
In December, my left arm went numb. Blood tests, an MRI and a variety of other tests were performed. Brain cancer and Lou Gehrig’s were offered as possibilities, but nothing certain. Advice was to observe and watch. For two years, there were no additional symptoms, which put me in the persistently uncertain world of “no news is good news..."
“Your results are positive.”
Those were the words the nurse says to me over the phone. Now, often times in life, you want to hear positive test results. When I received my positive pregnancy test results for both of my children, I was ecstatic! Positive results for COVID-19? Not so much...
My fingers seem to be tingling.
I live in San Francisco with my husband, two kids and dog. As I sit to write this, I’m reflecting on the past three weeks of our shelter-in-place and social distancing guidelines as mandated by our public officials, Mayor London Breed and Gov. Gavin Newsom because of COVID-19.
I was diagnosed with MS in 2015. Normally, I spend my days managing my family. Waking up, getting the kids fed and to school on time. A win every time that is accomplished because all parents know getting up and out of the house can be challenging. I exercise (something that is very important to me because of my MS) and then spend the rest of my day running errands (Target, grocery shopping, getting snacks and dinner ready, etc.), attending meetings for my volunteer projects, walking the dog, being a landlord and trying to spend time with my 93-year-old grandma...
When I was first diagnosed, I remember sitting in my neurologist’s office at the time in Vermont, which was quite far from home. My motto is “laugh or cry” over tough situations, and I wanted to be an easy patient for the staff. I turned to my parents after the official MS diagnosis and smiled and said, “At least it’s not diabetes! I could never imagine injecting medication. As long as that never happens, I’ll make it through this.” I swear, my neurologist turned pale white.
That was the beginning of my two-and-a-half year journey with Copaxone (which ended abruptly when I formed new lesions back in 2016)...
As I sit alone in my house, I am becoming familiar with the sounds it makes I never noticed before. The ticking of the clock is soothing, the dropping of ice in the freezer startles me and the subtle noise of the furnace turning on calms me. I am not usually alone with only the noise of my home. You see, my home is usually full of life. I normally cannot hear the sounds of my home over the sounds of my two boys and their friends. I must admit that I miss the sounds of the water running forever in a way too long shower, the microwave heating up a second and third dinner, and the monotonous commotion of endless video games.
I reflect on many things during my time in quarantine. Why did I get MS? Why do I have to get treatment once a month? Why am I always tired? Why does my hand go numb? Why can I not walk a mile without foot drop?
March is multiple sclerosis awareness month. Well, on the calendar it is.
But this past March, the world has been occupied with COVID-19. So, naturally and rightly so, our attention and efforts have shifted to keeping ourselves, our families, our communities and the world safe. Life has gotten insurmountably scarier for those of us who are medically compromised, and I imagine it's intimidating for many others as well. I won't attempt to compare COVID-19 and multiple sclerosis. However, the same empathy, compassion and support we desire for the MS community should be extended to people and families impacted by COVID-19. While we continue to support each other, I'm confident that our amazing medical professionals and government will get a handle on this crisis and life will prevail...