1. What supplements and Vitamins Do You Take and Why?
I take daily supplements like protein, collagen, greens and pre-workout. I don’t take these for my MS specifically, I just enjoy them and feel that they help to keep me regulated and on track towards my overall health and wellness goals. My favorite supplement company is Bloom Nutrition. I have used their products for several years.
I also take several vitamins and supplements in pill form using a daily pill organizer. Below is the list of the things I take and why.
Turmeric- Anti-inflammatory, full of antioxidants
Milk Thistle- Liver protection
Magnesium- Reduces stress and anxiety, supports healthy blood pressure levels
Vitamin D3- Helps the body absorb and retain calcium and phosphorous (most people with MS are deficient)
Ginger Root- Increases serotonin and dopamine levels, helps with nausea
Beet Root- Boosts brain power, regulates cholesterol and blood pressure as well as providing calcium, iron, and potassium
Fish Oil- Helps to reduce joint pain, helps with morning stiffness, helps with brain functionality and clarity
I also take a prescription for my high cholesterol which is sadly a genetic condition that I have.
2. What symptoms of MS do you experience the most?
As many of us know, symptoms come and go and they’re very unpredictable. I categorize my symptoms for myself by my daily symptoms that seem to always be with me, even when they’re more mild at times. I experience a lot of fatigue and brain fog. I can be so tired that I experience difficulty thinking straight, speaking and I feel light headed and nauseous. I also have tingling and weakness in my legs and my fingers. Sometimes the tingling is mild, and occasionally it is much more severe. My left leg drags and I feel disconnected from it most of the time. It takes a lot of awareness and effort to keep it from tripping me, and making sure I am being aware of stepping correctly and walking in sync with my other leg can become exhausting mentally and emotionally. I experience the feeling of overstimulation often and I am very sensitive to noise. In most cases when I am not at home, I travel with ear plugs so that I am able to mute a lot of the chaos that comes with being in groups of large people.
When in relapse, my brain fog becomes very serve and due to this, I also experience days of exhaustion that can be incapacitating. I also tend to have symptoms like waves of electric shocks through my left side that can be so forceful that they make me double over until they pass. They are unfortunately very disruptive and often embarrassing because they are so disorienting that I struggle with confusion and frustration if I am out in public. I have also experienced loss of vision, severe vertigo, burning sensations in my extremities and joint pain and spasticity.
3. How did Jack adjust to you having MS?
Jack is very supportive and loving by nature. Although I did really struggle with tremendous guilt knowing I was introducing him to a lifetime of illness, we were already married when I was diagnosed. That being said, I had been having attacks since long before we started dating and he always just thought that I was “the most illness prone person” he’s ever met, but he still chose life with me. To be fair, that is how I felt too when unable to explain why I was always suffering from these very random ailments. He has assured me a million times over that he would trade a life with me and my MS for a life with any one else in the world, healthy or not. I truly believe that anyone’s partner should feel the same way about them regardless of if they have a disease or not.
There was definitely more of an adjustment to his understanding of what I was experiencing and how best to help me through those times. Jack is rarely sick and he’s a very healthy individual overall, so it was a bit harder for him to be able to relate to anything I was going through with my disease. At times he could respond with things that made me feel like he was minimizing the severity of my experience, but through learning how the other copes and tries to push through difficult times, we figured out that it was just a communication style that differed, not the actual intention behind the words being used. He didn’t have much experience being around someone who is chronically ill, so there was work to do in how I could best communicate my needs to him in a way that made sense to him. Whereas I grew up seeing people suffer from several different kinds of illnesses and so we were completely opposite. I tend to always think “things can always get worse” where Jack is an optimist who believes “this isn’t that bad.” We have learned how to meet in the middle, staying optimistic together while also conveying concern and giving attention to things that don’t feel right. Jack has always been the most thoughtful person who truly enjoys showing his love by way of acts of service, so truly, our major hurdle was learning to communicate with each other in ways where we both felt our needs and intentions were understood and honored.
4. What treatment are you on and did you get to choose it?
I am currently on Ocrevus. I get my infusions every 6 months and so far, I’ve done pretty well on them. I didn’t pick my medication myself, but my doctor asked about my lifestyle and if I had a preference of whether or not I’d like injections, pills or infusions and how often I would like to take my medication. I strongly feel that for my lifestyle, infusions are what works best for me so that I don’t have to remember to take pills before every meal or give myself shots. I find that only going twice a year and not having to think about my medication every single day has a lot of mental health benefits for me. I’ve only ever been on Ocrevus and I hope that I won’t have to switch to another treatment anytime soon.
5. What Ethnicities are you? Are you religious?
I am Russian, German, Black, Korean and Japanese. My dad was Russian and German and my mom is Korean, Japanese and Black. I am not religious. My mom is very spiritual and has always felt deeply in tune with the universe. I appreciate a lot of the ideology that she has shared with me and have taken little bits and pieces of that with me throughout my life. I was technically raised in the Jewish faith on my dad’s side of the family. I was a Hebrew school dropout. Because my parents were separated before I turned two, I grew up splitting my time between both of their households. Choosing a religion felt like choosing a parent and I didn’t want to do that. Because I was the only one of six children to not have a Bar/Bat Mitzvah, I often struggled with feeling a bit like an outsider. I know that my sister and I also felt “othered” by the fact that we were the only non-white children of the 6 of us and the only girls. Though I love all of my brothers dearly and they’re loving towards us, there is a massive chasm in the way that we experience the world which at times can be very difficult to reconcile.
6. Do either of your parents or your siblings have autoimmune diseases?
Autoimmune disease likely ran in my family. My grandmother on my dad’s side of the family had Lupus, though she lived to be 94 and was in great health most of her life. My dad struggled with a lot of health issues, but if he had an autoimmune disease, it definitely went undiagnosed. A couple of my siblings struggle with disorders and autoimmune diseases, but for their own privacy, I won’t say which. I have no doubt that I was predisposed to have MS due to genes I inherited as well as the environment I was living in when my disease was triggered.
My mom was adopted and came to the United States from Korea during the war so we don’t have much information as far as her family’s health history.
7. Do you talk about your MS with your friends a lot?
Yes and no. I do feel as though I can be completely open and honest with several of my close friends about my disease, but truthfully, I enjoy not talking about it all the time. It is very nice to be able to talk about non MS related things and talk about other issues with them because I think sometimes we forget, as people living with a disease, we still have a ton of other issues we have to vent about that healthy people can totally empathize with (i.e. menstrual cramps, relationship advice, family drama, etc).
I am fortunate enough to have a very close and supportive inner circle of friends, most of which do not have a chronic illness, so a lot of times, they’re very great listeners but it’s not likely that they will be able to fully understand what I am going through. When I need to commiserate with people, I have a few friends who are living with autoimmune diseases that are great to share with, I reach out for support to some of my friends I have made through social media and MS related support, but I mostly talk to my mom, my husband and write. I love writing blog posts about the difficulties I face so that I can keep track of my symptoms and progress as well as share with people so that they can feel less alone when they’re having a difficult time coping.
8. Does drinking impact your symptoms?
Drinking moderately doesn’t seem to have much of an effect on me. I don’t drink when I am not feeling well, so if I am well enough to drink, I am usually not exacerbating any troubling symptoms. If I have had a lot to drink, it feels as though my symptoms are accelerated than someone who doesn’t have MS. I have trouble with balance when I am sober, let alone if I am drunk. I can experience dizziness, nausea, headaches and feeling sick to my stomach, but I never drink through those negative feelings. When I am done, I am done, thankfully. There are also times when I don’t feel the negative impacts of drinking until a day or two afterwards. With MS, a hangover can last five times longer and feel much more severe. I really think our reactions to drinking and how much it impacts our diseases has a lot to do with our individual tolerances.
9. Have you ever had to use walking assistance tools?
Yes, I did use a cane shortly after a relapse that I had in 2019. I was numb from the waist down and when I could feel my legs, they felt extremely weak and wobbly. I experienced a couple dangerous falls and finally started walking with a cane for about two months. Thankfully, when my relapse symptoms started to subside, I felt stronger and I worked on strength training, balance and flexibility every single day until I no longer felt like a walking assistance tool was necessary.
10. When you work out, does it make your MS worse or better?
I workout as a preventative measure as far as treating my MS. I think there are absolutely benefits to working out and helping with mood and energy levels as well as building strength, but I don’t workout specifically for my MS. I do so in order to improve my overall health and wellness and put myself in the best position possible to recover from any attacks in the future should they happen. My MS has a large impact on the way that I work out and what I am able to do depending on the disease activity that I am experiencing. It has taught me to be flexible, compassionate towards my body, and to show up in whatever capacity that I can no matter how I am feeling. Showing up is always enough, and I am almost always able to figure out what little I can do once I am there.
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